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Hi all,
This may seem like a familiar place, created to cater to the free flow of thought that many are used to.
And what the hay, if anything really good springs forth we can branch it off and create a special thread to deal with that.
BTW everybody, if you use this link ( http://poiscenter.com/forums/?action=.xml;type=atom (http://poiscenter.com/forums/?action=.xml;type=atom) ) and paste it into your regular EMail client "Outlook or whatever", you will automatically be sent all the latest posts, so it is easy to stay on top of new information. It is called an RSS feed.
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The link to the latest in this thread is:
http://poiscenter.com/forums/index.php?topic=426.0.new
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This is wonderful, Daveman!!!!!
You are a miracle-worker. :-)
Stef
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Ditto, Stef!!
T H A N K Y O U D A V E M A N !!!
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This place looks and feels so familiar, I want to post...
(http://i858.photobucket.com/albums/ab143/demografx/012f9113.jpg)
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I increase my initial pledge from 100 to 400 $, so that I would have given 500 $ totally :) It is the money I will get with my internship. Instead of putting it in a stupid video game and so on, the best investment for the future is to give to NORD !
THANK YOU, HABIBOU!
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I converted another $500 of my pledge to the donated column.
Thank you, B_Daniel for doing that amidst all that medical frustration!
Best,
Demo
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(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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I just gave $100.00 for the POIS fund and I will still be donating this amount for each of the next 12 months. I expect that I could give more in the next months, but this amount I guarantee.
I´m giving for POIS because this disease screw up my life and I know that, even that we have chance to descover a cure for our own, our chances will be a lot more with especialist researchs and methods.
I know that a lot of people here don´t have a lot of money but the situation isn't easy for no one. For me, in particular, is more expensive because brasilian coin has a half the value of dolar. Let´s go people, let´s donate.
(http://www.emofaces.com/en/emoticons/b/brazil-flag-waving-emoticon-animated.gif)
THANK YOU, FIDALGO!!
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This is wonderful, Daveman!!!!!
You are a miracle-worker. :-)
Stef
Thanks but as you can see Demo is and always has been the chief miracle worker!!
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Awww!!! ;D
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(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Hi everybody,
Don't let the advertising dissuade you from posting your free-flowing thoughts.
The discussions on this thread can go anywhere and everywhere.
As *you* wish.
Best,
Demo
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Just reposting this here as it seems we've moved to a new home :)
Quote from: daveman on 21/06/2012 19:55:04
The following post
http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803
is about something I?ve noticed before, that a full and complete ?O? seems to produce less symptoms than a partial or restricted one. In part it could be to do with retro-ejaculation (during a bad ?O?), which for me causes much worse POIS, or it could be to do with the PGD2 and PGE2 cycles. Not being to up on the biology, could somebody check out the referenced post and comment.
It seems that niacin for instance feeds the creation cycle of these prostaglandins, and if we orgasm too early the bad PGs are bolstered, whereas if we wait, the good ones are bolstered. Do I have this right?
In the post above, the dreamy state he mentions is associated with what I have felt when I ?O? early with too much niacin. However the benefit of the niacin is not as strong when that happens.
However like him, if my ?O?s? are complete (in a non-niacin scenario) the dreamy state is more prevalent yet my symptoms are less.
Can anyone decipher this?
Good versus bad seems to a complicated determination to make in relation to prostaglandins. I found an interesting article at http://www.pensgard.com/nutrition/4_Prostaglandins.htm
I don't have access to the original article but I did find some references on pubmed to support their description.
We know niacin releases pgd2 into the skin to produce flushing. http://www.ncbi.nlm.nih.gov/pubmed/1373750
Some of our symptoms like gastrointestinal issues could be explained by an overproduction of PGE1. However cognitive impairments from a prostaglandin imbalance may come from a deficiency of PGE1 (perhaps causing schizophrenia) or an increase in TXA2 causing depression.
There have been a few articles published which hypothesise that schizophrenia could be related to prostaglandin synthesis. Some of which hypothesise that some "successful" anti-schizophrenic drugs work by increasing prolactin levels and encouraging prostaglandin synthesis. However, medical science knows more about the different flavours of prostaglandin now so it's not merely a case of raising levels of all prostaglandins.
The schizophrenia and prostaglandin connection doesn't seem to have gone away. Here are some articles from pubmed.
http://www.ncbi.nlm.nih.gov/pubmed/67391
http://www.ncbi.nlm.nih.gov/pubmed/3520252
http://www.ncbi.nlm.nih.gov/pubmed/20446881
http://www.ncbi.nlm.nih.gov/pubmed/21334179
Mice too http://www.ncbi.nlm.nih.gov/pubmed/19416671
The article about PGE2 receptors in mice is very interesting as it appears medical researchers are figuring out that low levels of PGE2 may be implicated in diseases like ALS and alzheimers.
Niacin stimulates the synthesis of... You guessed it.. PGE2.
http://www.ncbi.nlm.nih.gov/pubmed/22442634
So why would this be related to POIS? Simply because during an O we produce prolactin. Too much or too little would be a problem and would likely indicate a problem with balancing PGE2 levels.
A diet with too much trans fatty acids will inhibit prostaglandin production while a diet with enough b vitamins, protein, zinc, vitamin E and essential fatty acids (from fish oil for most people) could regulate production. What the right amount is and whether some unknown disease could affect the levels of synthesis is a mystery to me. It seems that any b vitamin deficiency, nutrient absorption problem or b vitamin deficiency could produce symptoms of cognitive impairment.
Another problem may be a mutant delta-6-desaturase gene as hypothesised in http://www.ncbi.nlm.nih.gov/pubmed/3520252 or
some variant of a d-6-d malfunction.
(I have no idea whether any conclusive research has been done on the mutant d6d hypothesis but I do know that some research exists showing that arachidonic acid given to early stage alzheimer patients can lead to some improvement on cognitive tests).
If this was the case then there wouldn't be enough omega 6 fatty acids in the diet for prostaglandin synthesis. This seems unlikely given our diets are generally omega-6 rich but I've read some anecdotal reports of people who believe they're suffering from pyroluria (not getting into a discussion about whether this exists) that claim substantial improvements in concentration, anxiety levels and sleeping patterns when they supplement with zinc, b6 and arachidonic acid.
There could be an insufficient amount of ALA in the diet to produce Arachidonic acid or an inability to synthesise AA from ALA. http://en.wikipedia.org/wiki/Linoleic_acid
It's worth noting (after reading http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803) that liver was used to treat pernicious anaemia in the days before b12 injections and is also high in arachidonic acid.
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Demo,
maybe yo can linked (hipervínculo) the photos to NORD
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Re-post from the 'old place' ;)
I hope you dont mind...
I am fed up with the medical system!
I have a valid theory what causes my particular symptoms and have proposed reasonable diagnostic procedures to test the validity of my theory.
Still, each and every doc at my local university hospital is trying to get rid of me by suggesting psychological remedies to obviously physical causes. Everything I present, facts, cause - effect relationships, correlations, references to everything you have collected in this forum so far, is generously waved away and ignored. Everybody I have met so far is too afraid to try anything new that might cause negative side effects or can be seen as a major intervention, even if I declare to bear any related costs and waving any doc/hospital liabilities. In the medical system my right to self-determination is taken away and I declared incompetent at the whim of the gods in white...
Lets start at the beginning... as I described in previous posts, my case is slightly different from the majority of the cases I read about so far, in that my POIS symptoms started together with pain in my right testicle, following what I believe was a physical trauma of my right testicle I sustained during a spinning class (indoor cycling, balls squeezed on a hard saddle). I did have surgery (based on a wrong diagnosis) and two day relief after the surgery... until my first post-surgery ejaculation (see previous posts). Since then I am in constant POIS with right testicle pain, severity of both depending on sexual activity (always on a scale between 'bad' and 'worse').
I learned about POIS but did not know what to do about it, educated myself, and suffered throughout the last year... Only at the beginning of 2012 did I have the courage to make an appointment at my local university hospital. I specifically asked to talk to an immunologist but had to see a hospital GP first. I presented all the research you collected (waldinger everything else I could find), had all the usual tests done, including a p r i c k test with my own semen and a spermiogram. Basically all without any real results (as expected), Vitamin D deficiency, no allergy to my semen, spermiogram not great but something still seems to be alive.
My theory:
I have suffered a physical trauma to my right testicle through which immune cells gained access to the testicular microenvironment. Thus, the immune privilege might be broken and immune responses no longer suppressed. I came up with the suggestion to test this by pharmacological suppressing my immune system, just as it is for example done with transplant patients to prevent foreign tissue from being rejected. I dug up this seemingly unrelated info (http://en.wikipedia.org/wiki/Sympathetic_ophthalmia) about a rare eye disease, the eye also being an immune privileged site. Interestingly the preferred treatment is immunosuppressive therapy... Digging around a bit in medical literature I downloaded some bits and pieces from Google books, which you can find at the following location: http://min.us/myITMUQnQ
Most of the pages will not be relevant to you but have a look at diseases_1.jpg. The table is an excerpt from a 1993 paper of Rose/Bona, modifying something called "Witebsky's postulates". I did not get access to the 1993 paper (30USD) but the Witebsky criteria have to be met for a diseases to be classified as an autoimmune disease. I am not sure about the generally accepted status of POIS, is it actually classified as an autoimmune disease?! If so, on what basis? The evidence that has to be met according to the table is rather difficult to gather and it might not happen during our lifetime... BUT Level 3.6: RESPONSIVENESS TO IMMUNOSUPPRESSION !!! There it is again, and to me it is perfectly logical and just makes sense. I believe my symptoms to be autoimmune related, if this is indeed the case, symptoms should be diminished / vanish if the immune system is somehow suppressed.
Still I was not allowed an appointment with an immunologist before seeing a specialist for psychosomatic medicine / sexual therapy. The Prof completely ignored any facts I presented, alluded to my anxiety (very surprising after two years of continued POIS suffering) and proposed the usual psych therapy including SSRI's etc. I left after the second session. Being finally granted an appointment with the immunologist after five months, he also was very reluctant to pursue the immunosuppression route. I had to listen to numerous arguments why not to do it, how dangerous it is, sideffects etc (not that millions of transplant patients worldwide are living under immunosuppression, immunosuppression being indicated for several autoimmune diseases), that we would not gain anything from this exercise since I cant live my whole life with my immune system being knocked out (Knowledge gained?! Understanding of the POIS mechanism?), and the best one, that he could give me only 1/100th of the dose that would be indicated for eg the special eye case since I dont have anything SERIOUS!!! :o In order to get rid of me, to postpone decisions, and not to take any risks on his side, he sent me to urology again to take a biopsy of my right testicle to look for the infiltration of any inflammatory cells, which would support my theory. Four weeks later I had the appointment, the evening before I had some ejaculations to be sure to be in worst POIS state when the procedure was performed. The doc (he did not see me before) arrived 15min late, that was the time it took him to read up on my file. You can be sure that he never heard of POIS before, did not read a single paper on the topic and my file was the first time he was confronted with any of this... still the first thing he could tell me for sure when he entered was that POIS does not exist. Usual procedure of ignoring my arguments, using my POIS state against me by telling me what a clear case for a psychologist I am ("dont worry, in the US everybody has a shrink!") and that I should just IGNORE my symptoms! He refused to do the biopsy (probably for the better, its quite an invasive procedure that I rather go without) and sent me home with a prescription for Voltaren :o ... what a joke, never met anybody as prejudiced and arrogant as this guy.
So here I am... tomorrow I have a call with the immunologist again, I will try to make an appointment to start a diagnostic immunosuppression but the answer I will get is pretty clear, he will refuse to do it...
My problem is I cant go on living like this, I am almost unable to work, the way I feel EVERY morning you would normally not even get out of bed and just call in sick... I would like confirmation or rejection of my autoimmune theory based on facts so I can make an informed decision on how to continue... but most likely I will even be denied my diagnostic proposal. Most likely I will be denied any further help in this developed medical system and might be forced to seek help outside... like animus did.
Any suggestions, feedback, options?
Just a quick follow-up, forgot to mention that there actually is something called 'autoimmune orchitis' which is an autoimmune inflammation of a testicle:
http://www.ncbi.nlm.nih.gov/pubmed/21842235
http://autoimmune.pathology.jhmi.edu/diseases.cfm?systemID=3&DiseaseID=20
http://www.preservearticles.com/2012032028162/what-is-autoimmune-orchitis.html
Not directly relevant to you but I believe that this is the cause of / related to my POIS...
Interestingly one of the articles mentions 'testicular atrophy', a shrinking of the testicle. The urologist told me that mine are 'smaller than usual' but that doesnt mean anything... certainly not in connection with my autoimmune hypothesis *sarcasm* ... Autoimmune orchitis was never mentioned during the talk with the urologist, however he seemed to have a lot of knowledge in the psychological field *some more sarcasm* ...
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Just reposting this here as it seems we've moved to a new home :)
Quote from: daveman on 21/06/2012 19:55:04
The following post
http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803
is about something I?ve noticed before, that a full and complete ?O? seems to produce less symptoms than a partial or restricted one. In part it could be to do with retro-ejaculation (during a bad ?O?), which for me causes much worse POIS, or it could be to do with the PGD2 and PGE2 cycles. Not being to up on the biology, could somebody check out the referenced post and comment.
It seems that niacin for instance feeds the creation cycle of these prostaglandins, and if we orgasm too early the bad PGs are bolstered, whereas if we wait, the good ones are bolstered. Do I have this right?
In the post above, the dreamy state he mentions is associated with what I have felt when I ?O? early with too much niacin. However the benefit of the niacin is not as strong when that happens.
However like him, if my ?O?s? are complete (in a non-niacin scenario) the dreamy state is more prevalent yet my symptoms are less.
Can anyone decipher this?
Good versus bad seems to a complicated determination to make in relation to prostaglandins. I found an interesting article at http://www.pensgard.com/nutrition/4_Prostaglandins.htm
I don't have access to the original article but I did find some references on pubmed to support their description.
We know niacin releases pgd2 into the skin to produce flushing. http://www.ncbi.nlm.nih.gov/pubmed/1373750
Some of our symptoms like gastrointestinal issues could be explained by an overproduction of PGE1. However cognitive impairments from a prostaglandin imbalance may come from a deficiency of PGE1 (perhaps causing schizophrenia) or an increase in TXA2 causing depression.
There have been a few articles published which hypothesise that schizophrenia could be related to prostaglandin synthesis. Some of which hypothesise that some "successful" anti-schizophrenic drugs work by increasing prolactin levels and encouraging prostaglandin synthesis. However, medical science knows more about the different flavours of prostaglandin now so it's not merely a case of raising levels of all prostaglandins.
The schizophrenia and prostaglandin connection doesn't seem to have gone away. Here are some articles from pubmed.
http://www.ncbi.nlm.nih.gov/pubmed/67391
http://www.ncbi.nlm.nih.gov/pubmed/3520252
http://www.ncbi.nlm.nih.gov/pubmed/20446881
http://www.ncbi.nlm.nih.gov/pubmed/21334179
Mice too http://www.ncbi.nlm.nih.gov/pubmed/19416671
The article about PGE2 receptors in mice is very interesting as it appears medical researchers are figuring out that low levels of PGE2 may be implicated in diseases like ALS and alzheimers.
Niacin stimulates the synthesis of... You guessed it.. PGE2.
http://www.ncbi.nlm.nih.gov/pubmed/22442634
So why would this be related to POIS? Simply because during an O we produce prolactin. Too much or too little would be a problem and would likely indicate a problem with balancing PGE2 levels.
A diet with too much trans fatty acids will inhibit prostaglandin production while a diet with enough b vitamins, protein, zinc, vitamin E and essential fatty acids (from fish oil for most people) could regulate production. What the right amount is and whether some unknown disease could affect the levels of synthesis is a mystery to me. It seems that any b vitamin deficiency, nutrient absorption problem or b vitamin deficiency could produce symptoms of cognitive impairment.
Another problem may be a mutant delta-6-desaturase gene as hypothesised in http://www.ncbi.nlm.nih.gov/pubmed/3520252 or
some variant of a d-6-d malfunction.
(I have no idea whether any conclusive research has been done on the mutant d6d hypothesis but I do know that some research exists showing that arachidonic acid given to early stage alzheimer patients can lead to some improvement on cognitive tests).
If this was the case then there wouldn't be enough omega 6 fatty acids in the diet for prostaglandin synthesis. This seems unlikely given our diets are generally omega-6 rich but I've read some anecdotal reports of people who believe they're suffering from pyroluria (not getting into a discussion about whether this exists) that claim substantial improvements in concentration, anxiety levels and sleeping patterns when they supplement with zinc, b6 and arachidonic acid.
There could be an insufficient amount of ALA in the diet to produce Arachidonic acid or an inability to synthesise AA from ALA. http://en.wikipedia.org/wiki/Linoleic_acid
It's worth noting (after reading http://poiscenter.com/forums/index.php?topic=423.msg4803#msg4803) that liver was used to treat pernicious anaemia in the days before b12 injections and is also high in arachidonic acid.
Since omega3 and astaxanthin a potent PGE2 inhibitor help for POIS i think we are overproducing PGE2.
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That should have been niacin increases synthesis of PGD2 and PGE2 but flushes them into the skin. I think this reaction an hour or so before an O reduces the prolactin release during an O.
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I did tested prolactin and it is under the normal range.
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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Re-post from the 'old place' ;)
I hope you dont mind...
NOT AT ALL! FEEL FREE TO POST/RE-POST...even light toast!
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Demo,
maybe yo can linked (hipervínculo) the photos to NORD
Thank you, pep!
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I did tested prolactin and it is under the normal range.
Another possibility is not enough PGe1. Not sure how taking niacin would affect that.
A more controversial hypothesis would be that while our symptoms are similar we're not all suffering from the same thing. Different imbalances in prostaglandin levels may produce symptoms after an O but the symptoms might be somewhat different. Some people talk about allergies, some about depression and others talk about feeling schizophrenic. There may be 2 or more paths to POIS...
Also, there's a big problem with the "normal range" testing. There are people with thyroid disease who have TSH levels within range. I know someone who turned out to have a malignant thyroid tumour that wasn't discovered by 2 thyroid hormone tests. b12 deficiencies have failed to show up. There are some things which require a battery of tests for primary and 2ndary effects before they can be ruled out.
It might be useful if nordnurse could suggest some tests we could all get that, perhaps, could be given to researchers whenever they start their POIS study.
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Dear fellow 'lads'with P.O.I.S.
Lauracostis,Vandemolen, John21, Daveman, Demografx,
THANK YOU FOR HE WARM WELKOM, and the tips to jump to alternatives
Like to introduce myself here as new 'Dutch languaged' member. Did only read a view posts since 2006, but will be here now on weekly basis. Like to help document p.o.i.s treatment, monitor the psychological aspects of integrating the syndrome in social live, sharing insight in progress as well back-fall. Radiate a critical eye over my own process as well the opinion of others that will ask or tell here whatever comes up.
My P.o.i.s. was Official diagnosed in 2004 by its 'inventor' prof M. Waldinger. I am one of the about 40 patients that is described in Waldingers article in 2011, that undergo the subcutaneous test. [to test/prove if its an allergy or just a newage neurosis ;) ] If you are new to the allergy hypothesis [which I still approve,but*....], see also his article written 2011 in witch he describer 2 patients who go successfully a desensitization therapy http://www.thenakedscientists.com/forum/Smileys/default/icon_smile_shy.giftp://www.tandfonline.com/doi/abs/10.1080/009262302760328280
I did undergo the desentization also, and am almost at the end of it ....[and with it ;>) ]
Treated with desentization, partially progressed but still in therapy. My therapy takes now about 4 years. Not finished yet. Later on I will describe the effects of the therapy and its side effects during time between the injections. Content with actual state of progress? Sorry, NO**. Of course much lesser days sick and lesser outlaw of society but still 1 or 2 days frustratingly under influence of cognition symptoms and therefore wiser hiding for certain social contacts those days. The progress is also floating***
The treatment policy was to keep treatment quiet for the world until first results were published. Also the goal was not to interfere with other treatments, to keep results objective. Now the end of desensitization cums near [I went from 1 to 40.000 tot 1 to 3], I like to consider adding some help of complementary therapy. Of course I cannot read backwards all 367 posts here before I say /ask needless things, but I hope not to miss alternative healing methods or tips to help my body accept his own sperm. Need your help to inform me postpone what i can do.
you know already (see my post on naked scientist 24/6/2012) my sidekick to progesteron became a disappointment .postpone addition:I just removed my former post in which I described the exerience , it would be to much for you to read, wil add an other day....... Whether 2x 5 mg was to less to work, or even enough to interfere negative if of later discussion, If the skin itches so badly for 3 days it worked in any case!! ...my advise keep your hands of it till all experienced are bundled here later. I did read here before already and in Wiki that a patient was cured!?? with progesteron supletion. Others on pois fora about 6 ? do experiments with it. At the moment i dont have info how the patients react on the progesterone. My first opinion is that the claims are dangerously vague and paradox. but have to read everything over again to 'shoot on it' successfully.
Have no clue if there are complimentary treatment methods. At the moment I get vitamin D supletion, since that is done for now on for all sufferers of all kinds of allergies. My specialist will monitor progress with the already started vit D supletion.
My allergist ( keep him anonymous), tested hormones etc
for further future use/research
Vit D [normal nmol/l >50] ?........= 25.6. wich is to low, testosteron, [nmol/l 12-35] ?..?.=19.0) is ok
progesteron, [nmol/l 0.89-3.88] = <0.64)......[this result made me giving the progesteron the benefit of the doubt ]......so its intresting it did not help but even 'harm' to get it on normal level (0.89)
FSH U/l 3-15 =7.0
sex HBG, nmol/l 20-70 ?............=42
LH, U/l 1-8...................................=5,8blood.....
Hemoglobine , nmol/l 8.5-11.......=8.8
Ige ku/l <114....... ?.....................=9
My Ige before desensblstn Was 12 now 9 this looks intresting , but does not ?say? a lot. ****
since patients can experience strong reactions with Ige levels that indicate opposites.Thats exactly so interesting with our allergy. It does not follow the usual Ige interpretation strategy. For exact explanation of this paradox ask your own specialist.
again about progesterone:
> WIKI ?Dexters patient was completely treated (COMPLETELY TREATED ??!!) By 5 to 10 miligrames norethisterone Well?.: treated for sex related headaches or pois?? And in witch intervals the tablets are taken. And also in the days without sex? What is the effect on the organism on the long term? Is there anybody that has spoken to dr. Dexter or his patient, and how! the present situation is of that patient. Is there any administrator of any poisforum that keeps monitoring the others progesteron adepts.
> ?Certainly POIS Sr. member of poiscenter writes in
poiscenter.com/forums/index.php?topic=74.msg476#msg476 Dosage 5-15 mg about 1.5. Hours before orgasm but no longer as 12 hrs.
Others, (cant remember the source, sorry)?.do take a tablet also after the sex, but how long after is not mentioned.
Dear pois fellows?Please let us document this experiments more precise from now on. I and you and we are walking complete in the dark now.
Pois and isolation even in the own group: I like to take advantage to come in contact with other dutch patients . In 2004 I was promised to be united with the others, but during the cure never an attempt is done to unite the ones who wanted this.
Dus jongens, mannen meldt je [weer] bij me . Kan iemand mijn herinnering dat we een keer samen uitgenodigd zouden wordeN bevestigen? Zie mijn diplomatieke antword op een vraag hierover op naakte wetenschappers,..
...about this forum ......disapointingly, to me being on this site is almost nobody did effort to ad a biography part in his/her profile. May I invite you to change this, and add some info who you are , why not even your hobbies, and the way you got the clue about your pois, single or not, books who helped you sublimate, what keeps you happy against all odds. Our cause to be here could do it with some prettier info too to digest the serious subject better, and makes us feel recogniced also in nicer side of live. :) ^
my own biography:
Dutch,Virgo (25 august),age >45, profession paramedical, study philosophy, Pois diagnosed with links to recurrent herpes hs2. I am set free from job obligation, so all time for hobby's: pipe organ (www.Hauptwerk.com) massage, hi end, Bach, esspresso making, parfume,cosmology ,facebook, I am Dutch NVVE (exit) member, accepted for assisted fulfilled live,I like friendly irony, my hero's...Voltaire, David hume, Dame Edna, movy's: Bad day at black rock, Lemming, Arteficial intelligence, the Virgin Queen, I am single, for those it matters I am gay, and had 2 relationships which were nightmares for my partners, the last partner 'engaged' me with prof Waldingers theory, and immediately emigrated far away;>)reading/writing ironic tekst/literature is my mental food, speak german , my escape from pois is the typical Freudian, enjoy food like German pasty. Favoured place: the Alps, work as volunteer for people that had a stroke, my favorite friends: emphatic aspergers.....honest people you never get a chance to get bored.
* start to doubt if an allergy itself could not again be a result of other precursor [ design errors in our dna,genes,might we have 2 dna profiles like is already proven in other cases in the the forensic science....but that is only my intuition/wild guess 8)
(will work out the other asterisks in later posts)
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What about testosterone treatment, if nothing really works you could go for the Animus solution.
Testosterone greatly ameliorated my POIS symptoms.
But if you're planning a family, there are fertility risks you should discuss with your doctor.
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Well, with them or without them, the war on POIS will continue to be waged, and you'll raise your funds.
This is a very strong, cohesive group that has grown up over the past year -- and you have each other, Demo, and Daveman!
That's all you need for success. :-)
Stef
YOU ARE A TRUE, FRIEND, STEF!
Demo
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He Everyone!
I hope you're all starting to get used to posting your every day thoughts here. This is THE RIGHT PLACE do it!
There is no one here looking over your shoulders, deciding to intrude, make nasty, ignorant comments about your posts -- you are all free to express yourselves (as long as no one gets emotionally hurt by someone else's comments).
Take advantage of it over here! You are only among friends -- all on the same team! The thread will become more and more familiar, and the NSF thread will melt away into no-man's land. It's unfortunate -- as they will lose a lot of business and their google activity will likely drop dramatically. But it is what it is! What goes around, comes around.
You've got some exciting times ahead of you. Just wait and see!!!!!
Stef
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Re-post from the 'old place' ;)
I hope you dont mind...
NOT AT ALL! Thanks. This is Home, and all ours!
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Dave, I don't know how to thank you for this great POISer living room and all the nice comfy chairs you put out.
Fireplace, even!!
I'm not looking back. (Restriction/Forbidden City, North Korea POIS Forum!!)
;D
This is a perfect place!
Best,
Demo
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dear members of this thread,
I did write here My profile to introduce my history here few days ago.
might have been misunderstood. I did carefull screen my introtekst (see down)again, because I was not too kindly personally advised by the 2 administrators to not criticise others here. Luckily 1 of them did soften it later much more in pm. I'm Virgo, so asked friends to review my letter. Can alway make mistakes in other language. We cant find any real critisism. I quote my own sentences underneath.
Keep in mind I copied my post from naked scientists, it was not specially ment for here, oltough i mentioned 2 posts with info of this site that harmed me indirectly because i taken the medication advice over. on my own risk , ok I admit that ...but still wanted to save others for the same mistake.
Let my quote my own tekst to give me a honest chanche to defend my true intentions.
> Is there any administrator of any poisforum that keeps monitoring the others progesteron adepts.
I did NOT write; " There is no administrator " etc. But: ...".Is there any administrator ...clearly a question only ,no criticism. Only question mark forgotten.
> disappointingly, to me being on this site is almost nobody did effort to ad a biography part in his/her profile.[/u] May I invite you to change this
I am free to tell I am disappointed..freedom of feelings. { the familiar feel) I continue with an invitation to change this ...not a command
i did give a lot from my own biogr.
for the rest i have many critical questions....thats not the same as critisism
it seems more i my self is getting criticised. not bad. I am greatfull for that , because accepting criticism made me using my resourses/ talents better. Aslong its fair and i am well readed with empathy to filter the positive out my info rather than the to obviously negative. i see a given glass beer always half full, not half empty. May I invite to copycat that? I am here to service you only. :)
Tantalus,
Tantalus,
I know you have had to maintain silence and have been isolated for 4 yrs or more. It must be very frustrating. I can understand that you are very anxious to get connected to the POIS community, but I ask that you be patient.
Relax, get to know the forum. You are running at a different rhythm than we. It is not that we are not concerned about advancement; we have come a long way in this area. But testing and development take time and patience.
This forum was created specifically to try to organize approaches and ideas in individual threads, but there are those who also like free flow. We are trying to provide a place for all.
If you have a particular direction you wish to pursue, you may open an individual thread for it and throw it open for debate. But of course you cannot “insist” that everyone jump in and follow you. If you have something interesting, if you can develop a plan and organize, and more importantly if you can interest individuals here to join in, all the better.
Our “limited” evaluations show that progesterone has not been very effective; however, so far, testing has not been very extensive nor controlled. And as you may have realized, testing without correct doctor supervision can be disastrous, if not deadly. That’s why such patience is required.
We are 250 here and many more who follow the forum. It is a house for everyone.
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Hi Everyone!
I hope you're all starting to get used to posting your every day thoughts here. This is THE RIGHT PLACE do it!
There is no one here looking over your shoulders, deciding to intrude, make nasty, ignorant comments about your posts -- you are all free to express yourselves (as long as no one gets emotionally hurt by someone else's comments).
Take advantage of it over here! You are only among friends -- all on the same team! The thread will become more and more familiar, and the NSF thread will melt away into no-man's land. It's unfortunate -- as they will lose a lot of business and their google activity will likely drop dramatically. But it is what it is! What goes around, comes around.
You've got some exciting times ahead of you. Just wait and see!!!!!
Stef
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RE TANTALUS POST
Our “limited” evaluations show that progesterone has not been very effective; however, so far, testing has not been very extensive nor controlled. And as you may have realized, testing without correct doctor supervision can be disastrous, if not deadly. That’s why such patience is required.
We are 250 here and many more who follow the forum.
It is a house for everyone.
Yes, 250+ "variations on a theme"!
We all follow similar - yet very unique - paths!
As to progesterone, my own individual testing - together with a top endocrinology-researcher/medical-practitioner - - documented at our forum - it was a total disaster.
Yet I will not discourage cautious and responsible testing under specialized medical supervision.
But even the best physicians are not yet versed in progesterone and/or T/P treatments.
That combo could spell DANGER for the wrong people.
Especially some with POIS!
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dear members of this thread,
I did write here My profile to introduce my history here few days ago.
might have been misunderstood. I did carefull screen my introtekst (see down)again, because I was not too kindly personally advised by the 2 administrators to not criticise others here. Luckily 1 of them did soften it later much more in pm. I'm Virgo, so asked friends to review my letter. Can alway make mistakes in other language. We cant find any real critisism. I quote my own sentences underneath.
Keep in mind I copied my post from naked scientists, it was not specially ment for here, oltough i mentioned 2 posts with info of this site that harmed me indirectly because i taken the medication advice over. on my own risk , ok I admit that ...but still wanted to save others for the same mistake.
Let my quote my own tekst to give me a honest chanche to defend my true intentions.
> Is there any administrator of any poisforum that keeps monitoring the others progesteron adepts.
I did NOT write; " There is no administrator " etc. But: ...".Is there any administrator ...clearly a question only ,no criticism. Only question mark forgotten.
> disappointingly, to me being on this site is almost nobody did effort to ad a biography part in his/her profile.[/u] May I invite you to change this
I am free to tell I am disappointed..freedom of feelings. { the familiar feel) I continue with an invitation to change this ...not a command
i did give a lot from my own biogr.
for the rest i have many critical questions....thats not the same as critisism
it seems more i my self is getting criticised. not bad. I am greatfull for that , because accepting criticism made me using my resourses/ talents better. Aslong its fair and i am well readed with empathy to filter the positive out my info rather than the to obviously negative. i see a given glass beer always half full, not half empty. May I invite to copycat that? I am here to service you only. :)
Hi tantalus!
I'm so glad for you that you have finally found others with POIS to share your thoughts with. You've been alone with this much too long!
But -- it's very difficult to understand your messages (at least, for me it is).
I don't speak a word of Dutch, but I've heard it spoken -- it's not at all like English!!
If there is someone on this forum who speaks Dutch, and could possibly help translate your messages from Dutch to English before you post them -- just for a while -- it would be a lot of help for you and for the rest of us. Would that be OK with you -- someone from this POIS site to help translate your messages for a while???
I think there are one or two Dutch-speaking members who might be able to help out -- just until you get settled here.
What do you think about this?
Stef (nordnurse)
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Dear Nordnurse, thank you for your suggestion to improve my reply's, by asking other Dutchman to translate it better.
If a majority (or 40% of al comments I get here and in pm's), say the same as you, I wil take your suggestion over.
until now ( I did get much more private mails as I aspected ), I did not get any hint that they could not follow me.
in the contrary. I copy a pm i got this morning of a Brazilian member, and send it to you in a private mall later. I first ask his permission!
He complimented my English indirectly, by saying he could follow it verry well. ( I did specially ask him this because I doubt myselve too, if rather people here can understand my English.
But, maybe its not my English, but rather my thoughts. Maybe you mean my thoughts are not (always) easy to follow. Thats another piece of cake. I would regret that, it would make my effort senseless. I need more time here to, see what others think of that. I cold be more short sometimes, I know. But it takes more intelligence as I have to compress my thoughts in less words. It consumes more time too. General I work 4 hours continuously on my reply's . My intro did 12 hours, some others 6 hours. Can be my slight brain damage. But my intelligence is.not damaged ;>). some thing else....I admire your general idea's here in the topics, not to please you (not my mentality) but as a fact.
May I end with a quote of : a French mathematician, physicist, inventor, writer and Catholic philosopher.
BLAISE PASCAL
dear Friend: I didn't have time to write a short letter, so I wrote a long one instead.
http://en.wikipedia.org/wiki/Blaise_Pascal.....the quote's of him I did see in the Dutch wiki translation
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Tantalus, your english is not so bad, i undesrtand what you are writing to us.
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oke , did read this a bit late...started to remove my replies already, also the one to you. shi. Will keep things as it is now stable , and start my answer to you again, maybe others did appreciate the reply too. (6 hours worked on)
I don't think there is a need to remove your replies. There are many here who do not speak English fluently, but the message gets across.
Just relax, settle in, do the best you can and you'll be fine.
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Dear Nordnurse, thank you for your suggestion to improve my reply's, by asking other Dutchman to translate it better.
If a majority (or 40% of al comments I get here and in pm's), say the same as you, I wil take your suggestion over.
until now ( I did get much more private mails as I aspected ), I did not get any hint that they could not follow me.
in the contrary. I copy a pm i got this morning of a Brazilian member, and send it to you in a private mall later. I first ask his permission!
He complimented my English indirectly, by saying he could follow it verry well. ( I did specially ask him this because I doubt myselve too, if rather people here can understand my English.
But, maybe its not my English, but rather my thoughts. Maybe you mean my thoughts are not (always) easy to follow. Thats another piece of cake. I would regret that, it would make my effort senseless. I need more time here to, see what others think of that. I cold be more short sometimes, I know. But it takes more intelligence as I have to compress my thoughts in less words. It consumes more time too. General I work 4 hours continuously on my reply's . My intro did 12 hours, some others 6 hours. Can be my slight brain damage. But my intelligence is.not damaged ;>). some thing else....I admire your general idea's here in the topics, not to please you (not my mentality) but as a fact.
Hi tantalus,
I understood this post PERFECTLY!!!
So maybe it's just my not understanding your thoughts when the post is long.
I'm very interested in what you have to say -- which was my reason for suggesting help with English translation. But this post of yours was completely clear.
Question -- (since I've had trouble understanding your prior posts) -- what caused the "slight brain damage" that you mentioned? You've probably explained it already but I didn't understand.
I love the quote from Blaise Pascal, just FYI. :-)
May I end with a quote of : a French mathematician, physicist, inventor, writer and Catholic philosopher.
BLAISE PASCAL
dear Friend: I didn't have time to write a short letter, so I wrote a long one instead.
http://en.wikipedia.org/wiki/Blaise_Pascal.....the quote's of him I did see in the Dutch wiki translation
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C'mon over, everyone, and post your thoughts, opinions, comments, and beefs!
Best,
Demo
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Brain Fog future cure? (rapamycin)
http://www.sciencedaily.com/releases/2012/06/120629211902.htm
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just like to add my day-thougts now.
feel sick and have a headache. did masturbate tonight (could not resist to 'work' on the "remains of the day".)
ok?...I accept the 'punishment' , but ]the headache worries me a lot. NEVER had headaches after org...[now 12 hours ago], nor did I have pois reactions bevore 48 hours.
I am wondering if my only once !! taken PROGESTERONE a week ago left me this 'gift'. Wil talk about this soon with Waldingers right hand........seems I am getting my first 'friends' here and on naked sc. To sick now to return mails now..........I did masturbate a second time to feel better because of my headache and because i am sick now enyway. "F.." masturbate THE SYSTEM! >:(....buts not wise , I know. Repeated masturbation does worsen my pois sometimes ( I dont have this clear [if its prolonging the time with pois or just make me feel sicker at the moment].....ohhh guys, still too much to work out, even for a pois 'professional' like me. Many critical! ;) ;)questions to ask to myself too :)
thank you all for support for my 'swirling around' on the forums (and my stile of 'biting' back with a smile) in general, and support of my individual replies. :-* go back now to TV "keeping up appearances".
p.s. tried to come in telephone contact to other Dutch member....but he does not like live contacts with poisers . His good right.
not find an other yet to meet in Amsterdam or talk by telephone. n.b. (I do Not have hidden agenda's . Just want to exchange pois related info)
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Tantalus,
I think repeated orgasms both increases the time and worsens the symptoms. At least for me.
The effect of the progesterone is most likely temporary. If progesterone can set 4 yrs of desensitizatin back to zero, it's not a very good cure.
I know how you feel. We always wonder about this new pain and that new sensation. "In POIS", we somehow feel as though it is something else, we feel bad and stupid for having yet again made ourselves suffer.
We can't punish ourselves. It is normal to masturbate, to need relief. And we can't think objectively while in POIS, or evaluate ourselves or what we might be going through.
Try niacin. It just might help you. I took it after eating (least effetive) without flush (usually a bad sign) and only suffered one day. Had to take 500mg though, which is normally quite a high dosage.
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you just slipped under my fingers away but thanks for reacting so late at night still.
I will report about niacin here. I will also make a new appointment with my pois doctor. I am thinking of a re-entry desentization much shorter as the one before. the cure was anyhow not finished. We see, first I will stop sex a week or so and then try the niacin.
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Has anyone tried supplemental Testerone and Xatral ... has reduced head ache and other troubles
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Mypois agenda , my policy of being staying here
I asked my allergist to call me back.
we must talk about how to continue . I did stop with the desensitization 3 months ago. we were at 3 to 1 ( 1 part sperm 1 part water). The most nasty side effect became to strong.
Hyperacusis ( sound causes pain in the inner ear) became stronger. Hyperacusis did first appear at 300 to 1 ( cant remember exact, ) fade away with repeating the same dilutions in 2 months. appeared again in the latest stage of the cure. I decided to stop temporally the desensitization and just wait what would happen. Would the progress remain? Retrograde? I am in that process now. I better speak only with my allergist about my conclusions. In any way .....my pois is not stable....we have to wait how others react when they stop the cure before the end. I dont know yet how to go on, and will talk with him about the next options. Ii will also talk about my presence here, and what to share here, and what not to share or to share privately with gained buddies. The bond and trust with our allergist versus prof. Waldinger is essential for me. Some things have to keep secret even in private mails, other wise our doctors would not tell us things they normally would not tell to the average (pois ) patient. Its all experimental, so ....with you they will try something else as with me . And still a bigger group has to be treated exactly the same to get reverences.
A difficult process to balance for us AND for the therapists Therefore it is in my interest (and of us all) to be absolute loyal and confidentially with our therapist. some times we have to hide something for the other patients in general.
I proved to be loyal since 2004. dont regret. Except for being not here earlier, nobody did forbid me that, but it would not have stimulated the trust to tell me everything they knew. So I want to keep it so. If i might not awnser some questions or stay vague in future, its because of that status i want to keep.
I dont have time now to add forgotten commas etc. will review my English later.
so, that where my thoughts today.
and yours? please ad or add? (neither is corrected by the spelling correction) your thoughts here. Sad?
uncertain about your therapy?
Did you buy something luxury to be happy in spite of pois? Share !
Did you dream?
Regret? ::)
You are proud of something? ;D
Tell here. I am listening too. :) :)
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Has anyone tried supplemental Testerone ...
If you mean testosterone, it cured my POIS.
But anyone interested should ask their doctor about fertility risks.
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Brain Fog future cure? (rapamycin)
http://www.sciencedaily.com/releases/2012/06/120629211902.htm
Demo -- this is FASCINATING!!!!!
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CertainlyPois did write me :
A good amount of us have been waiting for a dr Waldinger patient, Tantalus, so you should be getting lots of questions. Dr waldinger being busy has not been able to answer lots of our questions.This is a good group, we are bonded by figuring out pois.
You can answer my questions in the "familiar feel" section am sure others are curious about the same questions. YOu can use my name to.
Any extradetail will be great about your treatment.
"I will answer your questions soon here. at the moment my allergist reads my posts here. To kill me off or to correct or to encourage me ...
Wile i wait for the final count down, i continue writing here. "
Til tomorrow " Certainly Pois "
yours sincerely , Tantalus
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questions CertainlyPois answers Tantalus
....we agreed to bring them in the open for discussion
>My desensitization is going, am not sure if it is helping or not.
well, mines is going too, And I despair sometimes too. Shall we sit together on the rivers of Babylon and cry? ;D I could indeed sometimes cry and I did a lot....but let us keep making jokes about our torture too being here together could bring us energy to go on .
see my (temporally adhoc) answer on naked scientist to .....FIDALGO 30/6/00.04 hours.
> I get dreams about sex that keeps my pois going.
Well, dear chap, the Oracle of Delphi could not said this much more vague, or? ::)
do you mean : you dream the cure is never going to work?
do you mean : the cure makes you dream intenser about sex?
But sorry, this is interesting: I did experience something just like that . As side effect of my desenti...sessions I got each time verry strong sexual fantasies and arousals. I hated that, because shooting would or could? make me longer recoffering from the injection, or falsify the stimulus given to the body by the injection the day before. But, there was no escape .The day after the injection I had more energy as other days. But , because n I had an high ( no pois but in contrary much more energy as normally ) my dreams and day fantasies became also more sexual loaded as normally. This again made me masturbating at night to get rid of this temptation thoughts or dreams. The regained energy we get from the effect of the cure-reaction itself , brings our suppressed lust back!!
This brings another difficulty we have to face during the cure. The process of balancing how often we ejaculate between the injection and the one that comes next. I supposed Our body will need a rest to re coffer. Get stable again. But then we like to know all ( I suppose) how good the body can deal with the next ejaculate. Nobody knows yet , the amount of ejaculates is wise to have. I had to experiment myself too. If I did it to often , I had to much pois to know the difference of having pois as result of the injection only .So, it seemed my not wise to masturbate to often in between the injections.
Others say ......its ok to masturbate during the re-coffer phase after injection. Find your own way in that , I tried to resist during recoffery . but maybe I have been too 'holy'' *
If the cure is done more fast as in your case , with only 1 or 2 weeks between the sessions, it even brings more question marks, how we should behave. There is in that case, less time to see how the body reacts in comparing the pois before .
This means me have to masturbate by system not by 'lust of the moment'. DIFFICULT!
I hated the moments I did masturbated without SYSTEM!.......because of the dreams/night fantasies when I was awake still.
you wil get more lust during treatment if you like or not. This is a paradox of the cure itself . You suffer from the injections, need to acclimatise but unwillingly trigger your pois because you must fill the next bottle with sperm for next treatment.......and must try not to shoot inbetween the 4 weeks or otherwise you can not monitor the difference of living without pois!!
This whole circle of try about s to get the hang of a system that gives us an idea of our progress is to much without an masturbation plan how absurd this even may sound. I did have one and was so able to see the progress. This did force me to get unwillingly a 'controlfreak' of my own lust. ...................do you wonder why I choose TANTALUSS as nickname?
......I have been in purgatory state l 4 years. Its up en down and back and forth and ......gradually you find out the pois is less worse as the time before. This is why we need a 4 weeks in between the sessions. so we can experiment and re-coffer from it to be strong enough to face the next session.
BOYS....please get it ....a diary is essential to compare results with other poisers.
>Am overweight and vitamind D is low like yours and i dont know if that is keeping me from fully getting healed or not.
getting to a normal vit D 'stage'is essential!!! do this first to treatment. It will cooperate with the cure.
>I have been doing desensitization for about 10months should i be expecting big improvements yet or should i wait to second year. I went from 1;40000 to 1;5 in about 9 months.
tell me first what happened when you did get 800 to 1 .
most people feel something around that status .......but I will not tell here to not prejudge your memory.
so be first more specific time is not essential. the dillution is!
you are to vague. Did you have setbacks? and did they inject you always with the same dilution, or did they step back sometimes?
Seems you did not do a diary ( dont hit me 8) ).....whithout that its impossible to predict the next step to aspect.. Please document your process from now on dear readers , who get treated next. Whithout diary no objective results to compare for next generation.
>My semen is not fresh when i get shot, it is refegirated.
I did the same ...IT is told to me that refrigerated it would led to stronger effect.
BUTT....I did read here [where?**] the opposite claim.....this is very annoying not to say irritating.
I will check this for you.. I choose for the strongest effect , if it might be opposite ...no wonder
it did not the job 100%. Especially because I did go so extremely slow. In your case it matters not so much if it would tend to be the soft approach, because it would be sublimated by the speed of going to 1 to 1 .
I check this with Waldinger c.s. its essential we speak here not in 2 tongues.
* to 'holy' and as result maybe not cured enough, because the body did not get bad enough stimuluses.....shit ...nobody knows til now.
** ...I check it out
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The dreams have been there before dessensitizations, they happen when i dont ejaculated for more than one week.
I dont get symptoms because of anxiety about dessensitizations the dreams actually give me pois.
I went back twice in my dessensitization from overreaction. I do have a diary it is just in a different section of forum.
Right now i go every week, when did you start going once a month.
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Brain Fog future cure? (rapamycin)
http://www.sciencedaily.com/releases/2012/06/120629211902.htm
Demo -- this is FASCINATING!!!!!
Thank you, Stef!
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The dreams have been there before dessensitizations, they happen when i dont ejaculated for more than one week.
I dont get symptoms because of anxiety about dessensitizations the dreams actually give me pois.
I went back twice in my dessensitization from overreaction. I do have a diary it is just in a different section of forum.
Right now i go every week, when did you start going once a month.
Hi, thank you for your trust to share more. I puzzled a lot about your words. "the dreams actually give me pois"
So, now we come to my big hangup here[ no biographies to refer to]
I do not know your age, but if you are much younger as me (I am >45), I suppose , you have not only more dreams , but even more wet dreams as me. I believe this is more likely to give you pois. I can Imagen this is a big problem, because we have no control about that.
Resisting doing 'it'. Will bring you more fantasies of course, if this is for me the case, this must for a younger person much more.
Another hangup: The stimulus that in nessecary to shoot, is getting less and less the more I delay to have sex. This might be for all of us. Masturbating have to be very careful .Do also not supress it to much, otherwise It drives you crazy and than you lose self control and you ejaculate .
Yes, I needed to get 3 times one or two steps back in desentiz.
I did go every week 4 times --------every 14 days a half year------- every 3 weeks 2 years? the rest 4 weekly . Sometimes we repaeted the same dillution. there is nobody yet that has been treated so long and in such long distances. AsIi did write elsewhere they had a good reason in my case.
I did like to answer you asap. But I think I did not say much.
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The dreams have been there before dessensitizations, they happen when i dont ejaculated for more than one week.
I dont get symptoms because of anxiety about dessensitizations the dreams actually give me pois.
I went back twice in my dessensitization from overreaction. I do have a diary it is just in a different section of forum.
Right now i go every week, when did you start going once a month.
Hi, thank you for your trust to share more. I puzzled a lot about your words. "the dreams actually give me pois"
So, now we come to my big hangup here[ no biographies to refer to]
I do not know your age, but if you are much younger as me (I am >45), I suppose , you have not only more dreams , but even more wet dreams as me. I believe this is more likely to give you pois. I can Imagen this is a big problem, because we have no control about that.
Resisting doing 'it'. Will bring you more fantasies of course, if this is for me the case, this must for a younger person much more.
I have learned to ban all porno out of my house to not get in temptation. The stimulus that makes me shoot, is getting less and less the more delay to have sex. This might be for all of us. i have to be very careful not to supress it to much, otherwise It drives me crazy and than I go to quick.
yes i needed to get 3 times one or two steps back in desentiz.
I did go every week 4 times every 14 days a half year every 3 weeks 2 years. rest 4 weekly . sometimes we repaeted the same dillution. there isnobody yet that has been treated so long and in such long distances. As i did write elsewhere they had a good reason in my case.
I did like to answer you asap. But I think I did not say much.
I am to tired now to go on writing. dont feel satisfied with my answers . Ii will continue and re edit this tonight.
you answered a lot by giving me your schedule, am right now every two weeks, i will stick with that for a while now.
When did you start noticing big improvements, is it the two year mark like in dr waldingers paper.
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Hi family, It is maybe good news for us all to know when senior p.o.i.s. specialists show regular interest in the forums too. We can only guess if they would come here in disguise by their own initiative..
Yesterday evening I asked one of Waldingers staff specialists (which I needed to confess my sneeky progesteron excursion, and to know how to proceed desensitization) to scan and screen this forum and naked scientists too.
This to prevent informationgaps. Also to prevent a too big nomansland between patients with and whithout university trained therapists Although this highly specialized people have almost no live after work, he/she did read a part of his evening here . I will not be his/her postman. But may bye I hear indirect impressions, question marks later on which I am supported to share. I suggested he/she could also maybe share here anyway some advice, or correct to high expectations regarding self medication, the fact he can do this by choice as 'user' will give him protection for to much attention. Otherwise curiosity could kill the cat. Since I did write myself here I might get his/her/their positive/negative feedback about my own content here too. I wait, shiver, and drink thea, :-X Gynostemma in my case. http://en.wikipedia.org/wiki/Gynostemma_pentaphyllum
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GERMAN visitor here? NEDERLANDER? English?
Komme gerne mit dich in telefonischer verbindung. Zweks pois unterhaltung einfuehrung.
Ik mis een nederlands maatje, om door te spreken, wat in engels te moeilijk is. En voor wederzijdse ondersteuning.
woon in Amsterdam. Ben al sinds 2004 patient van prof Waldinger.
Like to have and to be apois related telephone buddy. english writing (handicapt) is exremely tiring and can say things better in Words
We could skipe or telephone
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Tantalus, ich würde gerne mit dir skypen. Schreib mir einfach dann eine PM.
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Let's Cure POIS. Now.
(http://markarmstrongillustration.files.wordpress.com/2011/10/feature_presentation.gif)
Make "POIS Cured!"
the Feature Presentation - not...
(http://collider.com/wp-content/uploads/expendables-2-movie-poster-arnold-schwarzenegger.jpg)
Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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(http://images.mygirlyspace.com/myspacegraphics/images/graphics/prod_418_19806.gif)(http://netanimations.net/Happy-4th-of-july-with-fireworks.gif)
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Hi all - GoingCrazy, Vincent, observercenter, Daveman, nordnurse, all other POIS sufferers here, and a special hello to demografx,
My name is Ryan. I've had POIS since I was about 14; I'm 23 now. (Before that I did notice after each orgasm that I felt some fatigue, but my symptoms were not nearly severe enough that I could call it POIS.) My POIS is 90% cognitive, and the rest is mostly strong fatigue. My symptoms are: difficulty thinking, memory problems, trouble finding the right words, itchy scalp corresponding to foggy thinking, insomnia, occasional severe headache, racing thoughts, possible OCD, anxiety, social withdrawal, extreme frustration and irritability, general discomfort. I've lived in South Florida my whole life (though it's possible I could be moving out of FL and north at the end of the year). I did receive an accidental electrical shock in August '03, and for a long time I thought that is what was causing my symptoms. The shock was not strong enough to seriously injure me. I have since concluded that my POIS was not caused by the jolt, and I think that my POIS might have developed anyway.
Even though I'm new here, I've been following the forums for over a year now. I read through a lot of the information (not all 700+ pages word for word yet though). Perhaps what fascinates me the most is Animus' posts about his cure. I share so many symptoms with what he had before his cure, and even though I do not know what causes POIS, I also have a slight feeling that it has to do with the ejaculation of semen (regeneration theory). I can recall the very few times in the past I had a dry ejaculation for whatever reason, and I had very little POIS symptoms. I do not know if this is because of an allergy or something else, but I, like a few people, think it might have something to do with the body not liking the fact that semen has just been lost. Maybe, like others have said, the act of replenishing the semen is too taxing on the body. A few things that help my POIS are: 1) GOOD NIGHT'S SLEEP, 2) not ejaculating for a long while , 3) physical pain (I know it sounds really strange, but when I am injured in POIS, such as from a small skin burn or insect bite, I can usually think a little more clearly, almost like it "wakes me up"). 4) staying well hydrated. Using niacin seems to help me a little bit, but I'm still unsure, and it's definitely not a 100% cure for me whether it works or not. One interesting thing I've tried and had some nice results from is actually applying strong pressure to the area couple inches behind the testicles while ejaculating. This has given me completely DRY orgasms and seems to help a lot in many instances, although a few times I still had POIS later on (maybe because of retrograde ejaculation). Also, I'm not sure if this is necessarily the healthiest thing to be trying, but it seemed to work for me, albeit with varying effectiveness. My guess is that this action squeezes the prostate, not allowing much semen to be ejaculated. That's one more reason why I also believe ejaculation of semen causes POIS, and not the orgasm itself.
By the way, I remember reading several months ago on these forums about a member stating that hot showers made his POIS worse. Well for me, this is also definitely a big YES! Hot showers feel awesome and make me so relaxed DURING the shower, but several minutes after I get out, my POIS usually becomes much worse, especially if I was in strong POIS to begin with. Mainly severe cognitive symptoms result from this. After a good night's sleep, the next morning I feel much better.
[sigh] So in summary, POIS is a heck of a thing to have! But I think it can and will be cured one day soon. I think this not only because of the few people that actually had theirs cured, but because of the strange transient nature of POIS. I even had a hunch my POIS could be cured before I knew about the word POIS, so much that one of my main goals I kept telling myself back then was to "cure this "imbalance" I thought I had. I thought my symptoms were the result of some kind of chemical imbalance in my head. Luckily, I found out that my earlier guess about it being able to be cured was correct. That was a huge relief to me, and by far my favorite point that was made to me by reading through the forums. Thank you everyone!
Sorry for the long post. Hope to post again soon.
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A few things that help my POIS are: 1) GOOD NIGHT'S SLEEP, 2) not ejaculating for a long while , 3) physical pain (I know it sounds really strange, but when I am injured in POIS, such as from a small skin burn or insect bite, I can usually think a little more clearly, almost like it "wakes me up"). 4) staying well hydrated. Using niacin seems to help me a little bit, but I'm still unsure, and it's definitely not a 100% cure for me whether it works or not.
Hi Prancer!. You are not the first one to report that physical pain improves POIS symptoms, i am sure that i´ve read in the other forum someone who was hardly hit in the big toe and he experienced an incredible relief. I believe this could be very well related to some neurotransmitters... It would be interesting to find this quote.
Welcome to the forum :)
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wow its weekend. Indulge yourselve and pamper yourself with flowers , choclate or compliments...your worth it! We cannot share .e. between the selve and pois, but we can share LOVE.
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Prancer, welcome to the POIS Familiar Place! We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here!
(http://www.wilsoninfo.com/welcome/welcomeclipart9.gif)
Please check your mail inbox for a complete list of POIS resources.
Welcome aboard!
Demografx and Daveman
Your Forum Moderators
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Thanks! Hmm, that's very interesting. My girlfriend's dad is a doctor and she told him about my POIS a couple years ago (lol didn't want her to) and he said he has never heard of POIS before. But I also remember him mentioning something about the fact that pain makes my symptoms less severe as something worth looking into more. Maybe it is neurotransmitter-related somehow.
I think the body generates its own pain killers,, although maybe not as good as morphine (LOL).
I've noticed too if I have or get a cold during POIS, it sort of "takes over" the POIS somewhat. Instead of haveing a cold AND POIS, your just not sure which is which.
Don't get me wrong, I still insist that POIS is far worse than a cold. They don't compare on that level.
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I learned in my early POIS years, that I would catch cold if I ran around doing the same level of work as out-of-POIS.
I learned to slow down as soon as POIS started.
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Come on everybody. Just because NSF wants to close us down is no reason to stop donating!!!
Our research grant program is as strong and meaningfull as always.
We've still got POIS. We still don't have a solution. We still need to have a definitive definition for POIS, no matter how we feel we might be
closing in on a cause. We are laypeople, even if we find the cure, we won't have medical support until it comes officially through research.
We are frozen at $10,162. Do we not care?
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(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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Thank you demografx! I have a few questions for you if you don't mind.
Longterm, I believe that accumulated damage can easily occur. With over 30 years of POIS, I'm sure I would be a different person
That was back a few years ago before your cure. Do you now think POIS has left any permanent damage with you, or do you now feel like you did before POIS ever since your testosterone cure?
This might be a silly question, but if you were to completely stop taking testosterone do you think your POIS would come back? And lastly, does taking hot showers still affect you since your cure?
Thanks!
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Thank you demografx! I have a few questions for you if you don't mind.
Not at all.
Longterm, I believe that accumulated damage can easily occur. With over 30 years of POIS, I'm sure I would be a different person
That was back a few years ago before your cure. Do you now think POIS has left any permanent damage with you, or do you now feel like you did before POIS ever since your testosterone cure?
Excellent question, difficult answer. My guess is that some disturbance remains in cognitive performance (concentration, memory).
This might be a silly question, but if you were to completely stop taking testosterone do you think your POIS would come back?
I don't know and I am afraid to find out so I will not :)
And lastly, does taking hot showers still affect you since your cure?
Yes.
Thanks!
You're most welcome!
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Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.
To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.
(see attached screen shot if you need additional direction)
Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential! :)
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Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.
To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.
(see attached screen shot if you need additional direction)
Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential! :)
Hoping,
Excellent suggestion! I already have the "View the most recent posts on the forum" link bookmarked, and also rely on the RSS feed.
Of course, Daveman also set up several individual threads that can be added to or where new topics can be started. (Ironically, I just started a new topic!)
Soon the entire poiscenter.com will be "a familiar place."
And it will likely become THE PLACE! :-)
Stef
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Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.
To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.
(see attached screen shot if you need additional direction)
Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential! :)
Thank you Hoping. Also another feature we have is an RSS link:
http://poiscenter.com/forums/?action=.xml;type=atom
If you copy this link into any RSS reader (Outlook and many EMail programs have RSS readers too), you will get all the latest posts sent to you just like EMails with an link included to the forums post's link.
It's real handy!
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Hoping, Stef, and Daveman, your suggestions are most welcome as I embark upon NSF-desensitization :)
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Hoping, Stef, and Daveman, your suggestions are most welcome as I embark upon NSF-desensitization :)
LOL!
You can do it, Demo!!!!!
Stef
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There I go again, listening to a woman's Siren Call again.
That's how I got POIS in the first place!
:)
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(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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Hi everybody,
While I appreciate the purpose of this thread as a transition from NSF, I instead encourage people to use the "View the most recent posts on the forum" feature. By using this, you can simultaneously view all the most recent posts throughout the forum. It looks similar to NSF, but is broken up by thread titles.
To access this feature:
(1) enter the main page of the forum (where you see "General Category," "POIS Life Style," etc.).
(2) scroll to the bottom of this page where you will see a heading that reads "Forum Stats"
(3) under this heading, there is a link that reads "view the most recent posts on the forum." click it. you can now view and respond to the most recent posts from one location.
(see attached screen shot if you need additional direction)
Although I think that the "This may seem like a familar place" thread is well-intentioned, I also feel like it detracts from the purpose of the new forum. We don't want a new NSF that's 700 pages long. Let's create individual threads and really use this new forum to its full potential! :)
Hi Hoping,
I appreciate very much your input. Poiscenter was formed precisely to try to organize the topics, making it easier not only for POISers but for researchers alike to follow given topics, without them being lost in a long string of posts, maybe never to be seen again.
But we have a mini-crisis right now. We are being restricted more and more at NSF, to the point that it is becoming very difficult to accomplish the very important things we need to accomplish. We need to GET OUT OF THERE, bluntly put. We need an area that is OURs, which this (poiscenter) is. Nobody can tell us what we are allowed to do or say here it is OURS. If someone needs to talk about alternative remedies, the CAN, without being called a jerk.
We also vey much NEED to promote the research campaign, which we can’t do over there.
BUT One problem many POISers have, is directly related to the “disease”. Many of us have attentional deficit, it often requires heavy concentration (for a POISer) to do anything new. A change over, from NSF to HERE is a big deal. So the Familiar Place is an attempt to give them a place to make an easier transition.
We don’t want to get into another 700 page monster either. So one of the extra burdens that Demo and I have is to make an effort to rescue the more relevant ideas with potential and spin them off into separate threads. So, for the time being we need this space.
As Hoping says though, with just a little effort, you can set up your configuration either with RSS or using the new posts link, and try to help us maintain a distributed format, without losing your familiar feel of free flow of thought.
As always, us POISers, once we DO make a change and learn a new way, we usually find it very useful. Ask Demo about his new RSS link??
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Daveman writes, "ask demografx about his RSS feed".
Daveman, you are compassionate! I have now been waterboarded, er, awarded a Doctorate in SmartfoneRSS !
Dave, are we in the '90's tech era yet??
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Hoping, if this will reassure you, my intention is 100% in line with Daveman's, as he writes, "We don’t want to get into another 700 page monster either. So one of the extra burdens that Demo and I have is to make an effort to rescue the more relevant ideas with potential and spin them off into separate threads. So, for the time being we need this space."
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Re-printed from POIS Naked Science Forum today:
My Dear Fellow POIS-Sufferers,
I've decided to formally step down from moderating this [Naked Science] forum.
It's been a terrifically worthwhile five years, despite the trials and tribulations that go along with moderating. The good always outweighed the bad! And we've come a very long way -- two TV documentaries, getting listed on the official rare disease listings of NIH and Orphanet -- and a POIS research fund that is now over $10,000!
Research -- finding a cure for POIS -- is where my greatest dedication lies now, second only to supporting my fellow POIS sufferers. Since NSF management will not allow fund raising on the POIS thread for scientific research into our condition, I have no choice but to step down as moderator. I'm not neutral or objective about the need to raise these funds -- so I've decided to resign as the NSF POIS thread moderator.
You may hear from me from time to time -- but I'll be focusing my energies on the forum that Daveman designed -- poiscenter.com. There are several wonderful (and exciting!!!) plans in the works, which will be launched from that forum.
Never hesitate to contact me if you wish over at poiscenter.com. And feel free to visit and post there also! It's a great forum -- you can actually find information easily through specific threads, instead of trying to read through some 700 pages of posts.
Best wishes to everyone!
Your friend,
demografx
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Re-printed from POIS Naked Science Forum today:
My Dear Fellow POIS-Sufferers,
I've decided to formally step down from moderating this [Naked Science] forum.
It's been a terrifically worthwhile five years, despite the trials and tribulations that go along with moderating. The good always outweighed the bad! And we've come a very long way -- two TV documentaries, getting listed on the official rare disease listings of NIH and Orphanet -- and a POIS research fund that is now over $10,000!
Research -- finding a cure for POIS -- is where my greatest dedication lies now, second only to supporting my fellow POIS sufferers. Since NSF management will not allow fund raising on the POIS thread for scientific research into our condition, I have no choice but to step down as moderator. I'm not neutral or objective about the need to raise these funds -- so I've decided to resign as the NSF POIS thread moderator.
You may hear from me from time to time -- but I'll be focusing my energies on the forum that Daveman designed -- poiscenter.com. There are several wonderful (and exciting!!!) plans in the works, which will be launched from that forum.
Never hesitate to contact me if you wish over at poiscenter.com. And feel free to visit and post there also! It's a great forum -- you can actually find information easily through specific threads, instead of trying to read through some 700 pages of posts.
Best wishes to everyone!
Your friend,
demografx
I'm very very sorry it had to be that way Demo, but I'm with you 150%.
Look at the advances you speak of in your post above, all within the last year. It took 4 yrs to generate the first 1,000,000 page views and only one year to generate the last 900,000.
Now when we are moving and most visible, they cut the ground out from under us. And it was from the very activities that were moving us that we were “Banned”.
More than ever we need to have a free environment to do what must be done, to have POIS officially, scientifically and medically recognized, to find a cure and to get the word out to as many sufferers as possible.
Only with research was willow bark extract converted into aspirin. Now, the whole world has access.
Together, all of us here on the forum will work with you to find the cure.
Thanks for getting us here Demo, to where we are now and where we will be very soon. POIS free.
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Mighty fine and powerful words, Daveman.
Thank you ever so much.
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(http://3.bp.blogspot.com/-IoZ0sOXl-vg/TxBbc9vr73I/AAAAAAAACIw/0I0cF92M48g/s1600/happy_friday_13th.jpg)
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as an exception this reply here on family feel topic because most new users come here too.
Recommendation? about NIACIN START
Dear Daveman or other Niacin avatars. Maybe its a good idea to write a manual for beginners somewhere on pois center with everything to know about starting to use Niacin for the first time,for new users like me. Or start a new topic "starters guide to niacin" We will find the more guideline info about Niacin or Niacin-amide much more easy then, and are also able to skip al discussions beyond that theme for later to read. It also prevents missing necessary info, because info about the first trial of niacin and experiences users had as they started, is spread over to much different topics.
for me...I had to read so much, I forgot the most practical things to know for starting and how often and how long continuing the medication during the pois period after ejaculation. ASAP.
[/color]
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if vitamin b12 talk picks up here this are my results.
My vitamin b12 and folic acid came out good.
726 out of 211 - 946 pg/ml
15.4 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml
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NIACIN ......I did discoffer* the search engine to read all niacin related topics..there are 86 replies !! [ to give the total 'picture' for beginners for starting whitouth to much contradicting advises how to use during the pois days...... and how often....... and when exactly, etc /color]
I do not like to ask here unnessecary questions already askt /answered, so i read them all before I come back here to ask my
questions. Daveman did give verry good practical info for start , but i like to integrate the average meaning off other senior replies too. Daveman please wait replying here til I come back here.
* spelling-control put a red line here but does not give any clue why. ;>)
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Welcome to the Familiar Place thread of PoisCenter.com ! We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here.
(http://www.graphicsgrotto.com/glittergraphics/comments/welcome/images/gcwelcome11.gif)
**(If you have any technical questions, please feel free to PM (private message) Daveman or me -- or another forum member - - go towards the end of this welcome message (after the 5 available research articles are described) for instuctions on how to send PM. We'll be happy to explain.)***
If you haven't already done so, but would like to like to join the new forum, send "daveman" a PM here.
Here are some POIS resources which may be helpful to you:
Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos) Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".
Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/) Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CCconfucius"!
Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 4th button to your right! (http://www.POISCenter.com/forums/index.php)
Our alternate POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our 5-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.
Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/
The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.
Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g
Post Orgasmic Illness Syndrome "POIS": Case report
Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt
For more info, check out emi_b's SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen
POIS Research Studies available Upon Request:
1. and 2. POIS Research Studies, 2011
These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.
3. First POIS Research Study, 2002
We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD, Ph.D., and Dr. Dave Schweitzer, MD.
4. Recent POIS Research Study, 2010
CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781
5. British Medical Journal Case Report, 2010
Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).
To send a Private Message, click on "My Messages" at the top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.
New York Times article,
January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse
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In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
It can be very helpful to you when dealing with medical professionals to point this out. Click to see
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)
And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)
The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php. The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.
POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome
For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.
Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!
SEARCH THE FORUM WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
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if vitamin b12 talk picks up here this are my results.
My vitamin b12 and folic acid came out good.
726 out of 211 - 946 pg/ml
15.4 out of >3.0ng/ml
for folate acid considered deficient if <2.2 ng/ml
Thanks for posting your results, Cert!
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Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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THANK YOU FOR THE $30 TODAY!!!!
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Hi All --
Someone made the first new donation yesterday to your research fund, for the month of July. (This is in addition to the two monthly, automatic donations that come in from two forum members.).
Thank you for acknowledging him, Demo -- I hope he's seen it!!!!!
Your indiegogo crowd-sourcing campaign will bring in funding -- definitely!!! --> BUT YOUR HELP --> EACH OF YOU --> WILL BE NEEDED TO MAKE IT A REAL SUCCESS!!!
Every $ is precious!
Stef
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yes he has seen it. :) its quarterly year donation,so each 3 months. maybe the donation site can be adapted to this.
Please other users may I ignite , encourage you all to donate too? ::)It takes a view minutes, but is so worthwile for us all :-* :-*
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soon i will post here my first NIACIN experiences.
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yes he has seen it. :) its quarterly year donation,so each 3 months. maybe the donation site can be adapted to this.
Please other users may I ignite , encourage you all to donate too? ::)It takes a view minutes, but is so worthwile for us all :-* :-*
THANK YOU, TANTALUS!
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anybody interested in doing lit review on what has helped to find something useful. we will do search using google scholar instead of websites.
something we can do while waiting for reasearch.
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Hi All,
The following article, entitled, Medical Mavericks, came my way through NORD today, and I thought it might be of interest to you. It's not about POIS -- but I think you all might be able to relate to it. I thought of you all immediately!
FYI, they refer to an online community called, "Patients Like Me," -- one of the outstanding patient online communities. If you're interested in checking their site, just for the heck of it, the web address is www.patientslikeme.com.
Copied and pasted from the online medical journal, The Scientist, July 1, 2012:
"Eric Valor used to be an avid surfer, catching waves off the California coast near his home in Santa Cruz every weekend, and occasionally early in the morning before work. But in October 2004, his left foot started misbehaving, failing to find the correct position on his surfboard when Valor popped to his feet. "The foot would drag on takeoff, resulting in poor placement and subsequent wipe-out," he recalls.
After a series of minor muscle twitches, his dragging foot was the last straw, that finally got him to the doctor. In April 2005, Valor was diagnosed with amyotrophic lateral sclerosis (ALS). By that fall, his surfing days were over.
Valor is now paralyzed from the neck down, and he breathes with the help of a respirator. But he's not giving up. In June 2010, he learned of an experimental ALS drug called NP001, being developed by Palo Alto-based Neuraltus Pharmaceuticals. Then just beginning Phase I trials, the drug targets ALS patients' overactive immune cells, attempting to reduce the chronic neuroinflammation associated with the disease. It seemed promising to Valor, but unfortunately, his disease was too advanced for him to qualify for the trial. 'I made various attempts to get [enrolled], but failed,' says Valor, who responded to The Scientist via e-mail because his ventilator limits his speech.
If he couldn't participate in the trial, maybe he could get the drug another way, Valor reasoned. After an exhaustive literature search on PubMed, he identified the drug's cruder precursor as WF10, which is available for purchase abroad. But he quickly learned that importing it from Thailand would cost more than $12,000 for a year's supply. He then set out to see if he could get his hands on what he suspected, based on a literature search and a 2006 patent tracked down by fellow ALS patient and friend Rob Tison was the active ingredient of NP001: sodium chlorite, which is used in water-purification kits for campers and in municipal water treatment.
Last June, Valor began taking oral doses of the chemical, which is not approved for the treatment of any disease. And he thinks it's working. 'I have improved breathing, which makes transfers [off his ventilator] much more comfortable,' Valor says. 'My voice is louder and speech somewhat clearer. I am able to flex muscles that were previously still (though not enough for useful movement).'
At first, Valor didn't tell other ALS patients about his experimentation, hoping to first establish that it was safe, but by September, it had leaked, he says. Medical physicist and ALS patient Ben Harris, who was enrolled in the NP001 trial, was the one to get the ball rolling. NP001 had improved his strength, speech, breathing, and ability to swallow, and he wanted to keep taking the drug after his participation in the trial ended. 'The more I learned about [sodium chlorite], the more excited I got, and I felt it was too important to keep a secret,' says Harris, who also responded to questions via e-mail due to limitations associated with his disease. So he started a discussion thread on the website of Cambridge, Massachusetts-based biotech ALS Therapy Development Institute (ALS TDI), sparking widespread interest that helped launch the do-it-yourself (DIY) trial. Now more than two dozen other ALS patients are taking oral sodium chlorite, and recording their results on the social networking site PatientsLikeMe.
It's not the first time PatientsLikeMe has hosted this sort of DIY experiment. This is kind of an ongoing process on our site, says company co-founder and chairman Jamie Heywood, a mechanical engineer turned biomedical researcher who also founded ALS TDI in 1999, after his brother was diagnosed with the disorder. Just last year, for example, Heywood and his colleagues published an analysis of data reported on PatientsLikeMe by ALS patients taking lithium carbonate, a chemical approved for the treatment of bipolar disorder (Nat Biotech, 29:411-14, 2011).
'But this sodium chlorite case is particularly interesting and radical in many ways,' Heywood says. People are buying [sodium chlorite] from chemical companies; 'they're] not buying a human therapeutic.' Furthermore, most patients reporting their data on PatientsLikeMe are taking sodium chlorite orally, whereas Neuraltus is giving patients NP001 intravenously. And Heywood is still not sure if sodium chlorite is the true active ingredient of NP001. Without question in ALS, this is the biggest topic of conversation that we as researchers [and doctors] are talking about right now," Heywood says.
But the reports on PatientsLikeMe have put Heywood in a tough position. 'On the one hand, I think there's a moral obligation to deliver value in real time,' he says, looking at an analysis of the data on his computer screen. 'On the other hand, I know that it will be misinterpreted by many people,' he laments. 'The hard question for us is, What's the right thing for us to do? How do we share that information?'
Fortunately, the risk is moderate, Heywood believes, as do the patients taking sodium chlorite, most of whom have done some research before ingesting the chemical. I have done hundreds of hours of research to prove to myself that what I am doing is safe, says Harris. 'Moreover, if you add up the time spent by other forum contributors, we are probably talking about thousands of hours. . . .The story is not about a few desperate people with a terminal illness grasping for anything. . . .This is a solid scientific venture, it just so happens it is being done outside of an academic institution."
So -- Keep doing your research (carefully and safely)!! And keep posting about it!! You never know from where answers will spring forth!
Stef
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Thank you, Stef! :)
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Folks, as they say, it's complicated having two forums and having to repeat!
We have to unite under one forum, and THIS one is ours.
The other one is starting to restrict us. It is a forum that is read by women and children and they generally don't like sexual content.
They have let it go, but there are those who would prefer NOT to have a POIS thread over there.
We can't modify code, do back ups, add chats or enhance it. It is restricted to one single thread.
We are our own bosses here, we have freedom of movement and capacity do build and create.
Please unite over here.
The days of NSF are passing.
Thank you.
Thank you, Daveman!!
Demo
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just a short Hi to all. I have been quiet for a week. Have some very personal letters to write to my doctors, so no much time for the forum as before. i got a verry friendly letter from member Ali, in which he apologises fornot been here so long and therefore never seen my private mail. This kind of PM's make me feel warmly welcomed. indeed the familiar feel. Well guys ALI is back on the forum. Welcome ALI! :-*...........My allergist is on holiday . The last time we discussed the forum. I asked him questions you did asked here, bur never got sufficient replies. Later one I will write his answers here. About Niacin....he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself. So would self stimulated pain do also.
This brings me to the question whether sadomasochistic sex would sometimes help lowering the pois . Intriguing question , dont you agree?
Well, boringly I dont have SM experiences so I can not tell if it might influence pois postive. BUT !!! I did read a post on this forum subject??, i which a person claimed he did have less pois effect when he stimulates pain after the orgasm. [forgive me if i did read or quote wrong] This seems to state my theoretical guess. In my sneakiest fantasies, i see you all ironing your balls after today ;) i will wait till others do the experiment. ;D
I have now very different ideas about the so called 'flagellantes' [monks who whipped themselves for getting bonus points in heaven}, maybe they just had pois , and wanted to have just more fun without the cause and effect spiral'. ::)
I have tried 2 times Niacin now. 100mg and 150 mg . Ye,s it DOES have effect. Don't go into details now. Must repeat the same circumstances first a view times.
One of the first astonishing observations is ....NO RUNNING NOSE after 50 80 minutes after ejaculating in both sessions !. STRANGE!! The second time i used niacin i did do it wrong. So,...... the other Niacine sessions must be repeated first. Also I had more times orgasms the days after I used a dosage, its not convincing then to compare he two sessions in terms of pois relieve.
Will be continued.
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Hi All,
The following article, entitled, Medical Mavericks, came my way through NORD today, and I thought it might be of interest to you. It's not about POIS -- but I think you all might be able to relate to it. I thought of you all immediately!
FYI, they refer to an online community called, "Patients Like Me," -- one of the outstanding patient online communities. If you're interested in checking their site, just for the heck of it, the web address is www.patientslikeme.com.
Copied and pasted from the online medical journal, The Scientist, July 1, 2012:
"Eric Valor used to be an avid surfer, catching waves off the California coast near his home in Santa Cruz every weekend, and occasionally early in the morning before work. But in October 2004, his left foot started misbehaving, failing to find the correct position on his surfboard when Valor popped to his feet. "The foot would drag on takeoff, resulting in poor placement and subsequent wipe-out," he recalls.
After a series of minor muscle twitches, his dragging foot was the last straw, that finally got him to the doctor. In April 2005, Valor was diagnosed with amyotrophic lateral sclerosis (ALS). By that fall, his surfing days were over.
Valor is now paralyzed from the neck down, and he breathes with the help of a respirator. But he's not giving up. In June 2010, he learned of an experimental ALS drug called NP001, being developed by Palo Alto-based Neuraltus Pharmaceuticals. Then just beginning Phase I trials, the drug targets ALS patients' overactive immune cells, attempting to reduce the chronic neuroinflammation associated with the disease. It seemed promising to Valor, but unfortunately, his disease was too advanced for him to qualify for the trial. 'I made various attempts to get [enrolled], but failed,' says Valor, who responded to The Scientist via e-mail because his ventilator limits his speech.
If he couldn't participate in the trial, maybe he could get the drug another way, Valor reasoned. After an exhaustive literature search on PubMed, he identified the drug's cruder precursor as WF10, which is available for purchase abroad. But he quickly learned that importing it from Thailand would cost more than $12,000 for a year's supply. He then set out to see if he could get his hands on what he suspected, based on a literature search and a 2006 patent tracked down by fellow ALS patient and friend Rob Tison was the active ingredient of NP001: sodium chlorite, which is used in water-purification kits for campers and in municipal water treatment.
Last June, Valor began taking oral doses of the chemical, which is not approved for the treatment of any disease. And he thinks it's working. 'I have improved breathing, which makes transfers [off his ventilator] much more comfortable,' Valor says. 'My voice is louder and speech somewhat clearer. I am able to flex muscles that were previously still (though not enough for useful movement).'
At first, Valor didn't tell other ALS patients about his experimentation, hoping to first establish that it was safe, but by September, it had leaked, he says. Medical physicist and ALS patient Ben Harris, who was enrolled in the NP001 trial, was the one to get the ball rolling. NP001 had improved his strength, speech, breathing, and ability to swallow, and he wanted to keep taking the drug after his participation in the trial ended. 'The more I learned about [sodium chlorite], the more excited I got, and I felt it was too important to keep a secret,' says Harris, who also responded to questions via e-mail due to limitations associated with his disease. So he started a discussion thread on the website of Cambridge, Massachusetts-based biotech ALS Therapy Development Institute (ALS TDI), sparking widespread interest that helped launch the do-it-yourself (DIY) trial. Now more than two dozen other ALS patients are taking oral sodium chlorite, and recording their results on the social networking site PatientsLikeMe.
It's not the first time PatientsLikeMe has hosted this sort of DIY experiment. This is kind of an ongoing process on our site, says company co-founder and chairman Jamie Heywood, a mechanical engineer turned biomedical researcher who also founded ALS TDI in 1999, after his brother was diagnosed with the disorder. Just last year, for example, Heywood and his colleagues published an analysis of data reported on PatientsLikeMe by ALS patients taking lithium carbonate, a chemical approved for the treatment of bipolar disorder (Nat Biotech, 29:411-14, 2011).
'But this sodium chlorite case is particularly interesting and radical in many ways,' Heywood says. People are buying [sodium chlorite] from chemical companies; 'they're] not buying a human therapeutic.' Furthermore, most patients reporting their data on PatientsLikeMe are taking sodium chlorite orally, whereas Neuraltus is giving patients NP001 intravenously. And Heywood is still not sure if sodium chlorite is the true active ingredient of NP001. Without question in ALS, this is the biggest topic of conversation that we as researchers [and doctors] are talking about right now," Heywood says.
But the reports on PatientsLikeMe have put Heywood in a tough position. 'On the one hand, I think there's a moral obligation to deliver value in real time,' he says, looking at an analysis of the data on his computer screen. 'On the other hand, I know that it will be misinterpreted by many people,' he laments. 'The hard question for us is, What's the right thing for us to do? How do we share that information?'
Fortunately, the risk is moderate, Heywood believes, as do the patients taking sodium chlorite, most of whom have done some research before ingesting the chemical. I have done hundreds of hours of research to prove to myself that what I am doing is safe, says Harris. 'Moreover, if you add up the time spent by other forum contributors, we are probably talking about thousands of hours. . . .The story is not about a few desperate people with a terminal illness grasping for anything. . . .This is a solid scientific venture, it just so happens it is being done outside of an academic institution."
So -- Keep doing your research (carefully and safely)!! And keep posting about it!! You never know from where answers will spring forth!
Stef
very interesting to read, my father died of ALS.
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lauracostis,
I am soooooo sorry to hear that your dad died of this horrific disease! Please accept my heartfelt condolences -- I really do mean that, regardless of how long ago this might have happened.
ALS is a MONSTER...I cannot even begin to imagine what your dad's illness was like for you and your family (and of course, for him). My husband and I knew two people who died from it, and have been involved in the ALS Society's fund raisers for the past three years.
You're likely familiar with the online community, Patients Like Me.
For the benefit of others reading this, Patients Like Me was started by three MIT engineers in 2004. One of them had a 29-year-old brother with ALS -- and they wanted to connect with other ALS sufferers while also building "a health data-sharing platform" for ALS patients -- collect all the research into one place (sound familiar?).
That brother eventually died of ALS, but Patients Like Me was continued, and now serves patients with many different conditions. It's an excellent site, in my opinion.
At any rate, lauracostis, I'm truly sorry about your dad.
Stef
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Laurac, hi, great to see you again :)
-
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THANK YOU TO THE RETURNING MONTHLY DONOR!!!!
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-
Hi again,
Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I can't take feeling like this every day anymore!
Help regarding treatment would be most welcome.
-
Hi again,
Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I can't take feeling like this every day anymore!
Help regarding treatment would be most welcome.
You would probably be a perfect candidate for the below:
http://poiscenter.com/forums/index.php?topic=468.0
Do what you can to give it a try. The regime is a little complex, but the thread indicated simplifies it as much as possible. It's WORTH it to be free.
What your doctor says makes a lot of sense. If I get retrograde ejaculation, my POIS is a lot worse. Anything that "backs up" the pressure during the orgasm
can make it worse.
There's GOOD potential for the vitamin regime mentioned. It even works for those who haven't had success with niacin.
Good luck.
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Tantalus,
Your allergist says:
"..he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself."
We ourselves have more evidence that there is a good solid pharmaceutical effect that he probably has. I sense that he is guessing, even though it may be an educated guess. But we here on this very forum, have shown a potential theory with respect to it's pharmaceutical effects, and gone forward to even demonstrate the reality and affectivity of the theory. You may be following the posts on this thread. http://poiscenter.com/forums/index.php?topic=468.0
The idea is not to criticize YOUR allergist, but just make a common note, that most doctors are poorly connected to POIS problems.
I cannot imagine how he thinks that the niacin flush is anywhere NEAR stress of POIS to be able to "overpower" it. He must not understand what POIS is and how much we actually suffer with it.
Sorry to sound negative, but we have to take a stand! We have POIS and it is serious!
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Tantalus,
Your allergist says:
"..he tends to believe Niacin can block pois in a certain grade. But....Not because of any strictly pharmaceutical effect in special, but more because the Niacin stress [flush) substitutes and overpowers the pois stress itself."
We ourselves have more evidence that there is a good solid pharmaceutical effect that he probably has. I sense that he is guessing, even though it may be an educated guess. But we here on this very forum, have shown a potential theory with respect to it's pharmaceutical effects, and gone forward to even demonstrate the reality and affectivity of the theory. You may be following the posts on this thread. http://poiscenter.com/forums/index.php?topic=468.0
The idea is not to criticize YOUR allergist, but just make a common note, that most doctors are poorly connected to POIS problems.
I cannot imagine how he thinks that the niacin flush is anywhere NEAR stress of POIS to be able to "overpower" it. He must not understand what POIS is and how much we actually suffer with it.
Sorry to sound negative, but we have to take a stand! We have POIS and it is serious!
The only time I have sucess with niacin I didn't have the flush. So, I think it's not the flush that help POIS, but the niacin itself...
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The only time I have sucess with niacin I didn't have the flush. So, I think it's not the flush that help POIS, but the niacin itself...
Yes, I agree completely. It's sort of complicated to explain, but it seems that the flush, most times, is just "THE INDICATOR", that you have had enough niacin.
If the timing and conditions are more or less like we have established, then the flush usually indicates that you have taken the required quantity of niacin to be protected. However if for instance you have eaten soon before taking the niacin, you must take more, and the niacin delays in entering the system. Under those conditions I have been "protected" even though I ddin't get a flush. Also if you take a lot of niacin on a completely empty stomach, the flush comes fast and strong. If yo have the orgasm too quickly, you'll probably find that the niacin hasn't had time to do it's magic, and even though you had a good flush, you are not "protected".
So there are exceptions, and clearly it ISN'T the flush that protects, but the niacin.
That too goes against what the allergist thinks.
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Does anyone take Niaspan? I do, daily. It's 500 mg niacin extended release tablets. But my testosterone regimen works very well for my POIS, so my niacin is taken for other conditions. Just thought I'd post it for others to know about niacin-extended-release availability.
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Hi again,
Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I can't take feeling like this every day anymore!
Help regarding treatment would be most welcome.
My shutter is weak as well. I have posted this before and got replies that I was not the only one, i don't know how to fix it though. Try antihistamine to relieve symptoms, though some sites claim that antihistamines weaken the shutter.
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could the weak shutter be from overmasturbation. I think i have week shutter to. when i pee i see clear oily liquid in water, it looks like putting oil in water.
This problem gradually happend to me, it is not something i started out with having.
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It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I wonder if this is the reason of some POISers getting mild POIS from arousal or having symptoms that don´t go away . This just makes a lot of sense.
-
It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I wonder if this is the reason of some POISers getting mild POIS from arousal or having symptoms that don´t go away . This just makes a lot of sense.
As you know, I don't have much POIS now, but I DO notice, that if I go for a little more than 10 days, that some symptoms start coming back. I attribute this to simple assimilation of sperm by the body, which has been building up, with no place to go.
The body starts to dispose of it, and I start to get more symptoms. If I take niacin and have sex, everything resets to "hunky dorry"
-
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Hi again,
Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I can't take feeling like this every day anymore!
Help regarding treatment would be most welcome.
Amigoro --
Has your physician made any suggestions about retrograde ejaculation??
Stef
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Hi again,
Don't know if you guys remember me (hope you do). I posted a short while back on nsf a message talking about my constant pois and the horrible symptoms it's accompanied with. During the past few months in which time I have learned about pois and the triggers to it, I've stopped masturbating. Going celibate wasn't enough to stop the symptoms though. I would have pois symptoms constantly. I've realized the constant pois was being caused by physical contact to the penis. Any simple and light touch including the rubbing of my boxers can trigger it. The worst symptoms it causes is awful cognitive disfunction and immediate physical fatigue that can actually put me to sleep. The moment this happens I also have the urgent need to pee which ends up all foamy in the toilet. I went to a urologist who had no idea what i was talking about. Although in the end he did give me a valuable piece Of information which is the reason behind the foamy urine. It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I can't take feeling like this every day anymore!
Help regarding treatment would be most welcome.
Amigoro --
Has your physician made any suggestions about retrograde ejaculation??
Stef
Sounds almost operable
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The discussion with my urologyst about retrograde ejaculation was pretty blunt. When he mentioned the possibility of semen escaping into the bladder I immidiatley tried to get more information out of him but the kind doc didn't want to go off topic and there wasn't much time left so it ended there. When I got home I imidiatly started researching about it and this is mainly what I've found:
http://www.mayoclinic.com/health/retrograde-ejaculation/DS00913/DSECTION=treatments-and-drugs
This website shared with us info about possible treatment for retrograde ejaculation. After reading it I went straight to my local pharmacy to buy medication in order to help with the problem. One of the meds I baught was sudafed which is a decongestant medication that contains Psuedoephedrine, a component which will tighten the sphincter. Once taking it I had very bad brain fog and depression that went away after a few hours. Not pleasant (which is why I posted this in the first place). But most importantly, the effect of the Psuedoephedrine worked and made the non stop problem magically go away for a short while. I stopped taking it the next day because the brain fog repeated it's self. I went back to the pharmacy and got a drug called paramol That contains Psuedoephedrine in a lower dasage and chlorpheneramine. This seems to be working for me for the time being (a few days but does not get rid of the problem completely) and I have to take it 4 times a day.
From my undersatanding of what I have, semen is definitely the culprit here. It's the semen in the bladder that's causing the symptomes. So my guess is I'm creating semen that's harmful to my body that can be contained in the bladder and/ or maybe be alergic to it. It's a good guess to me.
I'm going to make another apointment with a urologyst to discuss the matter in depth. In the meantime I'm gonna do more research on it. God willing we will all find relief and self peace.
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amijgoro, thank you for sharing your detailed experience about this. I never had good luck with urologists. Maybe I expected too much from them. I assumed they were experts about anything going on "down there."
My cure eventually came through working with an endocrinologist.
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amijgoro, thank you for sharing your detailed experience about this. I never had good luck with urologists. Maybe I expected too much from them. I assumed they were experts about anything going on "down there."
My cure eventually came through working with an endocrinologist.
Endocrinologists are much more holistic in their thinking than most other doctors as diseases related to the over or underproduction of hormones, for whatever reason, can have symptoms that appear anywhere. You've got to remember that a doctor only knows how to treat certain things. If a disease is outside their understanding or treatment capabilities then they're unlikely to be interested. If you can get your doctor to refer you to an endocrinologist for your POIS symptoms it's a lot better than being referred to a shrink :)
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kurtosis, as soon as you said "refer to shrink" I went "ouch!!!" ;D
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I didn't wait to get referred to an endocrinogist. I barged right in!
30+ years of POIS agony, I had zero patience .
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I didn't wait to get referred to an endocrinogist. I barged right in!
30+ years of POIS agony, I had zero patience .
In some countries you can't do that Demo. Seriously, you cannot see a specialist without an explicit referral (in writing with paper trail) from a "family doctor". That might sound like nuts but the end result is that it makes POIS almost impossible to discuss with any doctor. I've been referred to shrinks 3 times for suggesting I might have POIS. Different doctors of course! I've come to the conclusion that these doctors need to be referred to psychiatrists themselves to deal with their delusions of infallibility :D
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I didn't wait to get referred to an endocrinogist. I barged right in!
30+ years of POIS agony, I had zero patience .
In some countries you can't do that Demo. Seriously, you cannot see a specialist without an explicit referral (in writing with paper trail) from a "family doctor". That might sound like nuts but the end result is that it makes POIS almost impossible to discuss with any doctor. I've been referred to shrinks 3 times for suggesting I might have POIS. Different doctors of course! I've come to the conclusion that these doctors need to be referred to psychiatrists themselves to deal with their delusions of infallibility :D
FFFFFFFFFFFFFFUCKKKKKKKKK POIS!!!
There, just wanted to get that off my chest.
A few months ago, I went on a search for an endocrinologist who'd be willing to work with me and supervise my treatment attempts. I was a bit surprised to discover that we've got a whole lot of jerks in Dubai with 'Dr.' before their names. The areas of government health and government education are perhaps the worst over here, with private institutions being about average. We spent money on a lot of things but missed the mark in those two critical areas. Anyway, governement/society problems aside, I don't want to give up, and I'll restart the search, especially because I don't know when my employer's patience will run out, what with the weekly one-to-two sick days off I keep taking.
So, is an endocrinologist the best doc for the job? And have you guys explored online correspondence with one? For a fee even? (A great business idea for doctors :D)
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It could be explained by semen in the mixture of my pee, meaning semen is somehow getting into my bladder which is causing my symptoms (because of pois of corse). This phenomenon is called retrograde ejaculation. It happens when the shutter between the bladder and prostate doesn't shut tight enough.
Stimulating the penis causes sperm to be released and enter the bladder through the weakened shutter or actually makes the shutter weak and allows a flow of semen into the bladder.
I wonder if this is the reason of some POISers getting mild POIS from arousal or having symptoms that don´t go away . This just makes a lot of sense.
As you know, I don't have much POIS now, but I DO notice, that if I go for a little more than 10 days, that some symptoms start coming back. I attribute this to simple assimilation of sperm by the body, which has been building up, with no place to go.
The body starts to dispose of it, and I start to get more symptoms. If I take niacin and have sex, everything resets to "hunky dorry"
I'm not sure if I've got the same cause(s), but I get POIS or at least POIS-like symptoms when I feel I'm 'loaded'. For me, that's usually on the third or fourth day since the last O. Yeah, I know--I've got problems abstaining from any sexual activity for more than a couple of days. A lot of will power and self-trickery is required, which are scarce in my case, because of POIS--Catch-22.
Hmm, I should probably search for posts on how to reduce libido and/or sperm production. Without surgery. I hope.
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I didn't wait to get referred to an endocrinogist. I barged right in!
30+ years of POIS agony, I had zero patience .
In some countries you can't do that Demo. Seriously, you cannot see a specialist without an explicit referral (in writing with paper trail) from a "family doctor". That might sound like nuts but the end result is that it makes POIS almost impossible to discuss with any doctor. I've been referred to shrinks 3 times for suggesting I might have POIS. Different doctors of course! I've come to the conclusion that these doctors need to be referred to psychiatrists themselves to deal with their delusions of infallibility :D
That's horrible!
Thanks for reminding me that I'm LUCKY that I could "just barge in" to a specialist's office. Here where I live you can do that but you might pay astronomical "out of network" charges!
The referral system in some locales is terrible.
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FFFFFFFFFFFFFFUCKKKKKKKKK POIS!!!
I CONCUR!!!
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The above is an example of freedom of speech that relieves some of my tension as well as Ali's.
Prohibited at the other forum.
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$9,270.00 $9,350.00 $10,272.00 $10,802.00 raised
THANK YOU TO THE RETURNING MONTHLY DONOR!!!!
towards our $33,500 goal.
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Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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Is an endocrinologist the best doc for the job?
In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).
I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.
My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.
I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.
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Is an endocrinologist the best doc for the job?
In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).
I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.
My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.
I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.
There's another great reason why university endocrinologists are useful to talk to about POIS or any similar disease involving fatigue and cognitive symptoms with mysterious origins. They're expected to publish papers and will actually have a vested interest in treating your illness and finding out what might be causing it. It might seem odd but most doctors have a professional requirement to make a best-judgement diagnosis but not a diagnosis that would withstand scrutiny in a peer review journal. For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"
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Is an endocrinologist the best doc for the job?
In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).
I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.
My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.
I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.
Wow, I never thought of a university MD. I'm not sure we have those here :P And about the testerone patches/gel, I think they must be prescribed over here--not available over the counter.
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...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"
LOL! :D
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...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"
LOL! :D
ditto lol!!
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Is an endocrinologist the best doc for the job?
In 2007-2008, the forum's "group wisdom" at that time (it was a very small POIS forum) was that POIS was a hormonal disorder, and that an endocrinologist would be a good choice to supervise what was recommended: a full hormonal bloodtesting/workup. (Waldinger's research study partner was and still is a Dutch endocrinologist, Dr Dave Schwartz, Netherlands.).
I was advised that a university endocrinologist would be a good idea because they teach and do research and would thus be more open to POIS than "by the textbook" doctors. In this case, I also felt the university medical lab was far more sophisticated than anything I had ever seen in private doctors' offices.
My bloodtesting revealed low testosterone. Much earlier, I had tried injections unsuccessfully and was told that this is because of the "spiking" effect, but testosterone patches and testosterone gel deliver a more uniform steady flow of testosterone throughout the system 24/7, which mimics the way the body actually delivers T naturally.
I was enraged and furious after 30 years of this SHIT, so I intensely absorbed the forum ideas in 2007 (I RESISTED doing an endocrinology workup at first) and found a cure. But I think I was very lucky.
Wow, I never thought of a university MD. I'm not sure we have those here :P And about the testerone patches/gel, I think they must be prescribed over here--not available over the counter.
Here, patches and gel must also be prescribed, never over the counter. I take 10 mg daily (2 patches) of Androderm (Watson Pharma is the manufacturer).
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So, is an endocrinologist the best doc for the job? And have you guys explored online correspondence with one? For a fee even? (A great business idea for doctors :D)
This is NOT an endorsement, but I see that endocrinology practitioners do sell their advice online. This is just one random example I pulled from a Google search :
http://www.liveperson.com/experts/health-medicine/specialty-medicine/endocrinology/
Best wishes! Your creativity, Ali, will overcome the hurdles of Dubai I'm sure.
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...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"
LOL! :D
ditto lol!!
Hey, if you still have a sense of humour after nearly 2 decades of POIS, you can survive anything right? :D
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...For example, you won't find any journal papers that conclude with "the symptoms were mysterious, the patient appeared intense and upset so I bundled them off to the psychiatrist. Cheque please!"
LOL! :D
ditto lol!!
Hey, if you still have a sense of humour after nearly 2 decades of POIS, you can survive anything right? :D
<wild applause>
kurtosis, you speak the truth! After 3 decades, I kept my humor regardless of whether anyone thought I was funny :)
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Who cares!!?? Just too much silence.
www.indiegogo.com/research-for-POIS
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Who cares!!?? Just too much silence.
www.indiegogo.com/research-for-POIS
I am @Observercenter on Twitter. Daveman has tweeted Ricky Martin. I think we should tweet celebrities/media. If only one of them pick up the story it would be really really great, we need to expand our campaign. To get the word out is the most difficult task.
Also, thanks to Tom for commenting in the campaing. Tom, you make a difference, we should follow your example.
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That's right!, Thanks Observer.
We've worked hard to raise $10,000, and there's $23,500 more needed!
Why not look for help to raise it. But we need to get the word out.
Each one take 30 minutes per day, that's all just 30 minutes per day to do some networking.
How ever. Twitter, Facebook, firends, family.
At Twitter we are @IPOIS, @demografx1, @observercenter, @ridgefieldmom18.
Follow us, follow and tweet your local celebs. anyone you know who might listen.
Now is the time so we don't have to wait another 2 yrs to raise the rest!
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Quoted:
"It's getting confusing alright, particularly with discussions on 2 websites. "
That's the reason for concentrating it into only ONE.
THIS one. it's OURs. Our software, OUR owners who dedicate ONLY to POIS and aren't interested in ANY other monetary / commercial
priorities.
THIS ONE, that let's us publicize our cause.
Why divide the energy? Why complicate the discussions, why repeat, and why resist?
The movement started there, but it has outgrown the medium.
NSF may be a great science forum, but we can do everything that can be done over there (for POIS) and more. LOTs more.
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$9,270.00 $9,350.00 $10,272.00 $11,002.00 raised!
THANK YOU FOR THE $200 GIFT FROM OUR ***REPEAT*** DONOR!!!! :) :)
towards our $33,500 goal.
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Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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Daveman is not online unfortionally.....
I am in the mood for a funtrial!!
so...: does enybody know how often I can ejaculate after taken niacin and between howmanny hours?
(22:22:09) tantalus: does niacin protect me still after 3 or 6 hours?
(22:22:39) tantalus: so may i have more as only one time an orgasm?
(22:23:38) tantalus: and whot is the maximum time after taken niacine to have sex again?
dont let me wait to long ;D
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Observertold me 3 orgasms are oke within 3 hours.
I did today my 3th niacin experiment. After the first 2 orgasms I did not get a running nose, after the 3th I got my nose running, not so long , about 20 minutes. Feel a bit worried if 3 times were too much to handle for the body to prevent pois. I wil know more tomorrow. I used 150 or 200 mg this time. I cannot remember exact. since I was distracted from attention. First I swallowed 100 mg and after an halfhour or hour the other tablet.
Sorry i did not react to replies of Daveman and an other one about my reply end juli ( my allergist). Because of holiday of myself and him too. I will see him Friday again.
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OK, but remember, niacin isn't necessarily a cure. If it helps you that's fantastic, although it probably won't let you have unlimited sex without problems.
Like I say, I'm a very happy man just to have one POIS free orgasm per week!! For me, more than that is stretching it.
Find your limit and what you can be happy with.
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Who hasn't been here yet???!!!
(http://www.poiscenter.com/images/widget_172083.png) (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)
GO (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)
If nothing else, but to have a look at what we are doing.... TRYING to do.
We NEED ALL YOUR SUPPORT. Unless you want to raise all the money yourselves!
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Observertold me 3 orgasms are oke within 3 hours.
Well, that could be risky ;D. I think even 2 are ok.
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Observertold me 3 orgasms are oke within 3 hours.
Well, that could be risky ;D. I think even 2 are ok.
Yes, I did interpret your answer in your private email maybye to much as a yes to my question. Actually, you did indeed write 'more as once is ok. ' This means indeed not not nececarely 3 times!!. I admit I have taken a risk by interpreting your answer to broad.
a bit stupid, but ...if you had to wait so long for letting go your lust as I did befor I did read about (Davemans) relieve . ............2 times could by not enough for you to maybe to cash the credits of postponed 'high's'.
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Here are some stats on the Indiegogo Campaign, with 54 days left!
The visitor to referrals ratio is about 165% ( 1 3/4 visitor per referral)
The donations ration is 0.36% Very poor (per visitor) 0.59% (per referral)
We receive on the average:
$0.09 per visitor
$0.15 per referral.
We need 66,667 referrals!
One twitter referral can produce retweets. I have made 20 tweets (using the indiegogo Tweet button and editing to send the tweet to some famous person),
and had 119 referrals. So I'm getting an average of about 6 retweets per referral.
I can send the stats on a regular basis, but we need you all to make the effort.
Can you afford 30 minutes per day? For POIS? With 30 minutes per day we can do A LOT!!
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Just a reminder: please keep in mind that all private emails must remain private.
Any private discussion should never be publicly posted without permission from the email recipient(s).
Thanks, everyone, for your cooperation.
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Who hasn't been here yet???!!!
(http://www.poiscenter.com/images/widget_172083.png) (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)
GO (http://www.indiegogo.com/research-for-POIS?a=858630&i=wdgi)
If nothing else, but to have a look at what we are doing.... TRYING to do.
We NEED ALL YOUR SUPPORT. Unless you want to raise all the money yourselves!
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Guys, I hate to be a nuisance, but I'm really disappointed in our effort to try and raise funds for Research.
We have an indiegogo campaign running, 1 wk of the 8 have already passed and we have a grand total of $25!! And that came from someone on the forum!!
We need participation! There have been a total of 5 comments on the site, almost ALL of which the organizing team has made. These comments do two things: 1) help to let potential donors what POIS is and how we suffer, and 2) raise our indiegogo level putting us more to the forefront.
For heaven's sake, we have POIS and it is terrible. Can't we take a little time to try to find a formal and final solution to this thing. If we can raise funds from outside, there are less funds we have to raise ourselves.
What does it take to light a fire under you all?
This is for you. Please, try something easy like 30 minutes per day. Follow the twitter campaign, post comments on www.indiegogo.com/research-for-POIS .
Please get involved. We only have 7 wks left.
Thank you!
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I see there have been several more comments on the indiegogo site at www.indiegogo.com/research-for-POIS .
These are very useful for helping potential donor understand how miserable this is!
Thank you for those who post there!!
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I see there have been several more comments on the indiegogo site at www.indiegogo.com/research-for-POIS .
These are very useful for helping potential donor understand how miserable this is!
Thank you for those who post there!!
Yes, very nice to see your comments, everyone! Keep them coming!
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I discovered this forum three months ago and the POIS disease in the same time. Reading this forum is changing a lot my opinion of my disease. When I was alone were very diffcult to know waht have or not relation with this disease.
I make this introduction because now I'm with doubt when my POIS really start. My strong POIS, which worst a lot my life quality, start when I was 20 with all the symptoms but, before that, I already had some kind of small POIS, with discomfort in the eyes, a bit tired, a small mental confusion, after each ejaculation and lasting some hours. I think that small POIS stars when I was 14/15 years old.
Some days ago I was think that I might had another symptoms of POIS in that time. I never realize that symptoms could be relation with POIS. I don?t know by sure the age (14-15-16) but in some time appeares some ringworm in my genital region. With that came a strong mental confusion when I was sleeping, a lot very bad dreams and I start to have a lot o noturnal emission. I never give a shir fot that but the ringworm was extreme related with the mental confusion in the sleep. In that time I never thought that this was a relation with ejaculation, but maybe. It was in that time that my POIS start, I think... I don't know if the ringworm have relation...
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fidalgo, thank you for sharing your experience!
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I make this introduction because now I'm with doubt when my POIS really start. My strong POIS, which worst a lot my life quality, start when I was 20 with all the symptoms but, before that, I already had some kind of small POIS, with discomfort in the eyes, a bit tired, a small mental confusion, after each ejaculation and lasting some hours. I think that small POIS stars when I was 14/15 years old.
My history is very similar. at 13 i was not yet e but had very good libido. at 14/15 i started loosing my libido. at 21 appeared all the POIS symptoms
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$9,270.00 $9,350.00 $10,272.00
$11,062.00 raised!
THANK YOU FOR THE $60 TODAY!!!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
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Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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2 tidbits-
"Scientists Closer to Birth Control Pill for Men"
http://abcnews.go.com/m/story?id=17028071
"Walnuts Linked To Improved Sperm Health: Study"
http://www.rttnews.com/1950242/walnuts-linked-to-improved-sperm-health-study.aspx?type=hnr&utm_source=google&utm_campaign=sitemap
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Today, POIScenter.com and our INDIEGOGO CAMPAIGN both appear in The Wall Street Journal's...
(http://optimalep.com/wp-content/uploads/2012/04/Market-Watch.jpg)
http://www.marketwatch.com/story/poiscentercom-announces-fundraising-effort-to-combat-rare-severely-debilitating-sexual-disorder-2012-08-20
AND WE ALSO APPEAR IN.......................
(https://lh3.googleusercontent.com/-0w9rdQAVeTM/UCv4Wg5V7zI/AAAAAAAABdA/l_2jko3Bm80/Breaking%2BNews%2BStory%2BGraphic.jpg)
http://finance.7online.com/abclocal.wabc/news/read?GUID=22072642
AND WE ALSO APPEAR IN.......................
(http://www.wealthlift.com/blog/wp-content/uploads/2012/05/yahooFinance-logo.jpg)
http://finance.yahoo.com/news/poiscenter-com-announces-fundraising-effort-194314351.html
AND WE ALSO APPEAR IN.......................
(http://a0.twimg.com/profile_images/1213095644/CBS-eye-white-bg.jpg) CBS NEWS
(http://ndwebfiles.marketwire.com/logos/338.gif)
(http://blog.rsanyc.net/property-rights/wp-content/uploads/2012/04/SF_Gate_LOGO.jpg)
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See Google results below for poiscenter-in-the-news.
http://www.google.com/search?q=poiscenter.com+announces&ie=UTF-8&oe=UTF-8&hl=en&client=safari
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See Google results below for poiscenter-in-the-news.
http://www.google.com/search?q=poiscenter.com+announces&ie=UTF-8&oe=UTF-8&hl=en&client=safari
fantastic, well done.
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Thanks, kurtosis!!
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CURRENT PUBLICITY PUSH
Daveman and I contributed $200 to our current major publicity effort. Total charge is $415 out-of-pocket charges. (Daveman's outrageous consulting demand of $87,000 per hour will be ignored! ;D)
It would be greatly appreciated if someone(s) could contribute the remaining $215. Thank you very much.
Daveman
Demo
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Our Press Release.
Email it to anyone who can help us!
http://www.marketwire.com/press-release/poiscentercom-announces-fundraising-effort-combat-rare-severely-debilitating-sexual-1692576.htm
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We appear in
(http://www.copyvigilante.com/wp-content/uploads/2012/03/msnbc.com-logo.jpg)
http://www.msnbc.msn.com/id/48728692
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Again my friends in POIS, I have to make my voice heard.
We went to a lot of trouble to put together a fairly comprehensive campaign on Indiegogo.com, to help to raise funds for our research. There’s a small team of us who have dedicated a fair bit of our time to TRY to make it happen. The more we raise outside, the less we have to raise ourselves!
But so far, after 14 days, we have $85, $60 of which one of the team-members “mother-in-law” put in. We are 1/3 into our allowed time of 60 days! So at this rate we will get maybe $200 from the campaign.
Why? Demo and I invested $415 into a publicity campaign, which there has been no offers to support, we have twitter going full time and facebook, BUT 5 PEOPLE CAN’T DO IT ALL. We can only reach so many people.
I know that not everybody can give money, but everybody CAN GIVE. It is very surprising what can be done with only 30 minutes per day, a little TV watching time. I feel bad that the dedicated few have to be abused and made to work or donate so much more because no one else wants to get involved.
I can only assume that you don’t believe in research, that you think, after 5 years of trying that this can be resolved with chat between us. Unless there is research, we won’t have the medical community and their cooperation behind us, one of your biggest complaints.
So do you think it is going to resolve itself? Or "Do you just NOT want to cure POIS? Is that what this
is all about?"
Please help me understand!!
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Thank you, Dave. I, too, would like to understand better where we are.
Are we a team?
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iPhone users:
To get your RSS feed of POIScenter.com on your iphone, copy and paste this link into Safari - your Web browser:
Or just click now and bookmark it.
http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom
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Our Press Release. With embedded video ABC TV documentary on POIS
Email it to anyone who can help us!
http://www.marketwire.com/press-release/poiscentercom-announces-fundraising-effort-combat-rare-severely-debilitating-sexual-1692576.htm
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TO Demo, Dave, and all the others that were involved in the campaign, I appreciate your efforts and all the time you guys put into this. Your work has not gone unnoticed by me, Thank you all!
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I mentioned in another post that I would be writing to major investigative news programs to try to get them to do a program on us. I was not looking in this thread and I have totally been absent in giving feedback here! You guys went through a lot to get this going, you at least should be getting feedback!
I have been recovering from a bad reaction to a psychiatric medicine change (POIS has a hand in that) and I just started school again. I will write these letters!
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I mentioned in another post that I would be writing to major investigative news programs to try to get them to do a program on us. I was not looking in this thread and I have totally been absent in giving feedback here! You guys went through a lot to get this going, you at least should be getting feedback!
I have been recovering from a bad reaction to a psychiatric medicine change (POIS has a hand in that) and I just started school again. I will write these letters!
Nightingale,
You've gone through so much with psychiatric medications! I'm so very sorry to hear that these medication reactions are an on-going problem.
I bet that if POIS weren't in the picture, you wouldn't need any of those meds!
You and I spoke by phone once, over a year ago, and you were 100% with it!!!! I could not have been speaking with a more terrific, sweet, intelligent, "NORMAL" person -- I remember that conversation vividly.
(Seriously speaking, I've had the opportunity to speak with some bona fide "oddballs" during my nursing career, both at NORD and before working at NORD. I once got a call from someone who wanted to know what to do -- she'd been abducted by aliens from outer space! Another couldn't stop eating toilet paper -- unused, unscented!) There's nothing funny about any of it -- but THAT is mental illness. THIS is POIS!
You were NOT odd in any way! Not in the slightest!
Please believe in yourself and stay the course. There will be an end to this POIS madness.
And go for it with those letters, once you're feeling better!!
Stef
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TO Demo, Dave, and all the others that were involved in the campaign, I appreciate your efforts and all the time you guys put into this. Your work has not gone unnoticed by me, Thank you all!
Thanks, laurac!!!!
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Trying to get some twitter folks to RT a notice about it. I wish very much I could just write a cheque for this and get this research underway.
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Thanks, Nightingale, Laurac, Kurtosis, others.
It's good to get the feedback about what is being done, even the hardships and difficulties in getting responses.
It's all incentive to the rest of us to kick in as a team.
We're a team of 400+, LOTS of potential there.
Thanks
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I mentioned in another post that I would be writing to major investigative news programs to try to get them to do a program on us. I was not looking in this thread and I have totally been absent in giving feedback here! You guys went through a lot to get this going, you at least should be getting feedback!
I have been recovering from a bad reaction to a psychiatric medicine change (POIS has a hand in that) and I just started school again. I will write these letters!
URLs and quotes from the news release (Demo has left a few on the board here and there) are great material to send to big corporations etc.
That is one of the best uses of news releases, to use them as seeds and evidence that we are involved and serious.
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Newspaper example: POIScenter placement. (and hopefully dozens more newspapers will bring us newbies/donors).
(http://www.lovesticks.com/images/photo_sac_bee_logo.jpg)
http://markets.financialcontent.com/mi.sacbee/news/read/22072642/POIScenter.com_Announces_Fundraising_Effort_to_Combat_Rare
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Hey, guys, here's an EASY way to particpipate:
Observercenter posted a coment on TOPIX-dot-com, a HUMAN SEXUALITY NEWS SITE:
http://www.topix.com/health/depression/2012/08/poiscenter-com-announces-fundraising-effort-to-combat-rare-severely-debilitating-sexual-disorder
JUST ADD YOUR OWN COMMENT AT THE LINK ABOVE AND YOU MIGHT HELP REACH A WHOLE NEW AUDIENCE OF NEWBIES = DONORS!
Invite 'em over!!
Thanks for trying!!!!!!!
Demo
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FFFFFFFFFFFFFFUCKKKKKKKKK POIS!!!
I CONCUR!!!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://i858.photobucket.com/albums/ab143/demografx/0d0e0e35.jpg)
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Hey, guys, here's an EASY way to participate:
Observercenter posted a coment on TOPIX-dot-com, a HUMAN SEXUALITY NEWS SITE:
http://m.topix.com/forum/health/depression/TJFPAV7PB9PRAO6FC
JUST ADD YOUR OWN COMMENT AT THE LINK ABOVE AND YOU MIGHT HELP REACH A WHOLE NEW AUDIENCE OF NEWBIES = DONORS! Invite them to POIScenter.com !
Thanks very much for trying!
Thanks again Observer for leading the way!
And thank you so much to lauracostis, Stefanie - aka nordnurse - Nightingale, Hoping, and kurtosis!
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TO ALL OUR NEWCOMERS AND FRIENDS:
Let's Cure POIS. Now.
(http://www.theoink.net/index3_htm_files/now_appearing1.gif)
Make "POIS Cured!"
the Feature Presentation - not Arnold!
(http://collider.com/wp-content/uploads/expendables-2-movie-poster-arnold-schwarzenegger.jpg)
Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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Hey, guys, here's an EASY way to participate:
Observercenter posted a coment on TOPIX-dot-com, a HUMAN SEXUALITY NEWS SITE:
http://m.topix.com/forum/health/depression/TJFPAV7PB9PRAO6FC
JUST ADD YOUR OWN COMMENT AT THE LINK ABOVE AND YOU MIGHT HELP REACH A WHOLE NEW AUDIENCE OF NEWBIES = DONORS! Invite them to POIScenter.com !
Thanks very much for trying!
Thanks again Observer for leading the way!
And thank you so much to lauracostis, ridgefieldmom aka Our Very Own Stefanie - aka nordnurse - and Nightingale, Hoping, Kurtosis, and Fidalgo!
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Topix.com statistics and demographics
(http://i858.photobucket.com/albums/ab143/demografx/AA3BD93F-1839-4DD8-9CE4-467C28060010-651-0000008B4BDBF2C8.jpg)
WEB TRAFFIC FOR JUL 29, 2012 - AUG 27, 2012
People per Month 12,876,211
Visits per Month 21,247,293
Online 15,821,589
Mobile Web 5,425,703
Page Views per Month 129,448,448
Online 75,799,196
Mobile Web 53,649,252
Mobile Web traffic is measured from web browsers on mobile devices, but not mobile applications.
Source: http://widget.quantcast.com/topix.com/traffic/mobileweb?country=US
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Great going, guys, as you can see above, you might have reached some good numbers of people with all your posting at Topix.com!
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Hi All!
A donation of $100 was made to the POIS research grant fund today.
But this is not about the donor.
This is about Daveman. It is clearly stated that the donation was made in Daveman's honor -- on behalf of his efforts to help another human being.
Without going into details, Daveman is using his innate ENGINEERING/SCIENTIFIC skills to help someone in the US who is suffering from a dreadful rare disorder. (This person does not have POIS).
Demo once described Daveman as an "architectural genius" -- he could not have used better descriptive words. Daveman is undertaking this very complex project essentially for free, knowing that the family has exhausted their bank account. He has already put a great deal of effort into this project (despite working very long hours during the week, serving as the head of a large household, and doing his best to keep http://poiscenter.com (http://poiscenter.com) running smoothly).
Most of you likely see Daveman as a no-nonsense, intelligent, often serious, sometimes very funny, computer-savvy individual. And you've also likely noticed his stalwart dedication to raising funds for POIS research.
What may not always come through on the forum posts, but which I've recently had the privilege to witness, is Daveman's amazing generosity of spirit -- the greatest attribute that anyone can have!!
He heard about a woman in the US who is struggling severely from a very rare condition, and is hoping that his engineering knowledge (my words here -- "unique engineering knowledge") -- might be able to help her climb out of some of the hell she's been living in. He's now in the process of putting a very complex engineering project into action on her behalf. He's given her and her husband some realistic hope, where there was formerly only darkness and despair.
Daveman just very well may be able to do for her what various physicians and physical therapy specialists have not been able to do!
But even if Daveman's efforts don't ultimately help this woman, he will have shown that human kindness is very much alive and well, and that we are all part of the human family -- no matter how different our individual lives are and how far apart on this planet we live from each other.
So -- to reiterate -- this donation was made in honor of Daveman and his incredible generosity as a human being.
I'm guessing that he'll be very embarrassed to read this post! But I just could not let this this wonderful act of humanity -- by the creator of this wonderful forum -- pass without acknowledgement.
Stef
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Daveman proving his awesomeness again.
Way to go daveman!!!!!!!!!!!!!!!!!!!!!!!
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WOW, I just saw this! Shucks Stef!!
I don't know how selfless it is, if it's successful it will be quite rewarding. It's rewarding anyways to work with people toward an end especially a difficult one, and see results, smiles, shining eyes!
And IT GOT ANOTHER DONATION, YAYYY!
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WOW, I just saw this! Shucks Stef!!
I don't know how selfless it is, if it's successful it will be quite rewarding. It's rewarding anyways to work with people toward an end especially a difficult one, and see results, smiles, shining eyes!
And IT GOT ANOTHER DONATION, YAYYY!
Daveman, I hope I didn't embarrass you!
The effort -- and your intention to help -- is invaluable. A price just can't be placed on it.
Regarding this woman and her loving husband (who will move heaven and earth to help his wife) -- if your project is ultimately successful, you will have taken two human beings out of a dungeon
And yep -- it brought in your group's first new donation through NORD's website in about two months!!! (By the way, the donor has specifically requested anonymity.)
What goes around, comes around!
Stef
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Daveman proving his awesomeness again.
Way to go daveman!!!!!!!!!!!!!!!!!!!!!!!
Daveman rocks!!
PD: I will try to translate soon into Spanish the Multi-lingual description about POIS!
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Daveman proving his awesomeness again.
Way to go daveman!!!!!!!!!!!!!!!!!!!!!!!
Daveman rocks!!
PD: I will try to translate soon into Spanish the Multi-lingual description about POIS!
No need to be embarrassed Daveman. Credit where credit is due.
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We need more research for sure and donations at the NORD fund. If we not make this happen, we can talk about it till we die. From what I read on the internet, allergy tests are somehow difficult to be conclusive, so I think we should focus on getting as many people on desensitization. If let's say 90% get cured we consider that as evidence. Problem is getting them on desensitization as most allergists won't start without conclusive evidence. Solution will be the research fund (and get advanced allergy tests done) and us going to allergists and hitting them with the Waldinger paper and also telling about the huge impact pois has on our life (it is not just sneezing a few times).
Well said for the need for research and donations, Rocky.
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Let's Cure POIS. Now.
(http://whomurderedrobertwone.com/wp-content/uploads/2010/07/Feature-Presentation.png)
Let's make "THE DARK NIGHT (POIS) RISES (Cured)!"
the Feature Presentation - not..........
.......(http://upload.wikimedia.org/wikipedia/en/thumb/8/83/Dark_knight_rises_poster.jpg/220px-Dark_knight_rises_poster.jpg)
Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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(http://www.kvie.org/support/images/button_donate_monthly.gif) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)<<<Just click on the sign <<<
We are all extremely grateful for the "steady base" that some of you are already providing to this POIS Grant Fund.
Very reassuring!
Thank you very, very much to our FREQUENT POIS RESEARCH CONTRIBUTORS!!!!!
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;D WOW! WE'RE OFF THIS CHART!! ;D
(http://walkercorporatelaw.com/wp-content/uploads/2011/06/fundraising.jpg)
$9,270.00 $9,350.00 $10,272.00
$11,862.00 raised!
THANK YOU FOR THE $50! Plus TWO (2) $100 DONATIONS - ONE IN HONOR OF DAVEMAN !!!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Simply click above and scroll down till you see, "Make this a recurring donation"...
THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!
$5.00? Yes!
$10.00? Yes!
$More? Yes!
*****EVERY***** DOLLAR COUNTS!!!!
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To anyone who sees SPAM: PLEASE use the *"report to moderator" button!
Thank you for keeping POIScenter.com a clean, safe environment.
Daveman
Demografx
*
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THANK YOU!!
FOR THE RECENT $50 DONATION!
AND THANK YOU FOR THE (2) $100 DONATIONS!
And one (of the (2) donations above) is in honor of Daveman!!!
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Q. What's the best thing about being an aging POISer?
A. Nocturnal emissions eventually stop.
(at least they finally did for this aging POISer)
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THANK YOU!!
FOR *ANOTHER* $50 DONATION!
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LEVITRA
This has helped my POIS since reporting about it on the POIS Forum in 2007.
It's been a mystery though. At one time, I thought it was my cure, then it stopped working - then combined with testosterone patches that I take 365 days/year for POIS - I know it helps, I just don't know the who where what why of it all. Sometimes it works before sex, sometimes it works after sex!
Looking forward to our research grant possibly exploring this expensive (NO insurance covers this Rx) drug - so if money is an issue, we're stuck with ordering from "foreign pharmacies". Dangerous IMHO .
Anyone have experience with Levitra, Viagra, or Cialis? (similar action drugs).
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Interesting video
"Male Orgasmic Disorder"
http://www.youtube.com/watch?v=gOAIE7jC8SI&sns=em
Too much "psychological" orientation - but flexible enough about other medical treatments IMO .
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Interesting video
"Male Orgasmic Disorder"
http://www.youtube.com/watch?v=gOAIE7jC8SI&sns=em
Too much "psychological" orientation - but flexible enough about other medical treatments IMO .
Interesting video. At first I thought it was a parody. I have zero problem orgasming though, but I get the exact same frustration/melancholiness (if that's a word) after the orgasm, so I can sort of relate.
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Demo, in regards to the levitra, my thinking would be that its the vasodilator effects of the drug that helped you. More blood flow to muscles/brain maybe? Kurtosis could probably figure out why it worked
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Demo, in regards to the levitra, my thinking would be that its the vasodilator effects of the drug that helped you. More blood flow to muscles/brain maybe? Kurtosis could probably figure out why it worked
I'm happy with your answer :)
If POIS is basically hyperadrenergic POTS that's not such a problem that we faint all the time but is a problem around an O then, yeah vasodilation effects are the most likely.
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I´m not sure what Levitra is, would it be a sort of "Viagra"?
I have a question about Viagra. Would Viagra be incompatible with niacin. If one were to take the two together?
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Daveman, as far as I know they're identical. Competing manufacturers.
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My hunch/theory (just speaking for my POIS) is that the refractory period is somehow associated with POIS.
The faster the RATE of replenishment, the LESS POIS - and Levitra perhaps aids the process, thereby ameliorating the POIS - in my case from 80% to 90% and higher, with mood meds boosting me to 100.
Wish I were a clinician! I have no patience for diaries but what I'm telling you about is over many years experience. But not 100% consistent, so I don't plan on writing a book. ;D
I've heard the vasodilation explanation before, it makes sense. Wonder if vasodilation AND refractory rate are somehow both implicated? Not necessarily in tandem.
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THANK YOU!!
FOR THE RECENT $400.00 DONATION!!!!!!!!
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WOW $400!
That puts us well over $12,000, can you believe it?
That $400 must have hurt. One of us cares enough to go that far out. And I know, almost any amount hurts!
Perhaps not as much as POIS. POIS is continuous, or at best 50, 60% of the time. Even a monthly donation only hurts for a day, maybe 2.
Thank you Mr. Donor, and for all of those who have helped us get to $12,312. Come on, we're getting there! To freedom.
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the praise is great guys but i was just trying to make due on the 700 i prosmise which is small compared to others
THANK YOU, CertainlyPOIS FOR THE $400.00 DONATION!
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My 3 Hour Meeting Today with the celebrity actor, "Squiggy" of "LaVerne and Shirley" TV fame. He is David L. Lander
Edit: David's website is http://DavidLLander.com/
Thank you CertainlyPOIS, Stefanie/nordnurse, Daveman, and others for encouraging me to do this!
(http://ecx.images-amazon.com/images/I/51tOdUoZw3L._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_.jpg)
The purpose of our meeting today was to re-acquaint (we were friends in HS days in New York when he was still David Landau.)
And to discuss POIS and similarities with David's experience with MS. He was most encouraging and was impressed that we raised over 1/3 of our goal without ever meeting each other.
IT TOOK DAVID 15 YEARS BEFORE HE WOULD "COME OUT" AND ADMIT HE HAD MS.
SOUND SIMILAR?
As a start, David is making available to you all the free 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.
David L. Lander's memoir Fall Down Laughing chronicles his life story hiding multiple sclerosis from the public for 15 years. And it is F U N N Y !!!
Best known for playing "Squiggy" on the television hit "Laverne & Shirley", David L. Lander has appeared in dozens of television shows and feature films including Who Framed Roger Rabbit? and A League Of Their Own. Lander was honored by the National Sclerosis Society as their Ambassador of the Year in 2000.
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Thank you very much David Landau for this generous offer!
There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.
I'm going to start "coming clean" from today forward!
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"coming out" might be painful, but the rewards, as Squiggy, Observercenter, nordnurse, and Daveman reported, can well be worth it.
I still refuse to tell anyone ;D ;D ;D ;D
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Thank you very much David Landau for this generous offer!
There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.
I'm going to start "coming clean" from today forward!
The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.
Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract. POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.
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At work is a tough call, and each case would have to be carefully considered I think.
I'm going to start with the in laws and near family. I don't have the problem that they can accuse me of being lazy (with chores or whatever) and using POIS as an excuse.
We live with the in-laws (mother in law elderly sis-in-law single Mom). So they will now know every time we have sex. Will be able to "understand" the weird things we do to hide the niacin rituals, pre-sex fasting etc. etc. but it's a start.
I have to convince my wife now!!
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Wow another donation for $200 came in!!
I understand it came from someone who had already started an automatic $50 per month donation, so this is above and beyond!! Good Going! I can’t say how much it is appreciated, and the good that it will do.
We MAY be able to find a cure by ourselves, for most of us, but the fund will get it into the books and hands of doctors! Even if we do it ourselves, our small hard to find group will be the only ones to get it. With these donations, we will bring it to the medical community. We open the doors to ALL the POIS sufferes in the world.
Feel GOOD about your donation! You ARE doing something for ALL of us.
Thanks!
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Thank you very much David Landau for this generous offer!
There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.
I'm going to start "coming clean" from today forward!
The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.
Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract. POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.
kurtosis, you have described the conflict superbly!
But look at MS "embarrassment". POIS is more similar to MS than to HIV/AIDS, which is most often SEXUALLY transmitted.
I see many similarities in David's embarrassment to ours. We can still learn from him even though ours is "sexual".
Lets look for the similarities, not the differences.
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Thank you very much David Landau for this generous offer!
There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.
I'm going to start "coming clean" from today forward!
The big problem with "coming clean" as a POIS sufferer. The medical community don't recognise POIS so you're as likely to be labelled someone with an anxiety or psychosexual problem as a disease. My aunt has MS. it's awful and I wouldn't wish it on anybody but there's no doubt about what she has.
Even if POIS was an accepted diagnosis, I'd only share it with colleagues on a need to know basis. Perhaps human resources or a senior manager as it is difficult to hide and some companies insist you notify them of illnesses in your employment contract. POIS has the double stigma of a sexual disorder and a disease that affects cognitive ability and judgement. Discussing it openly is a tough call.
kurtosis, you have described the conflict superbly!
But look at MS "embarrassment". POIS is more similar to MS than to HIV/AIDS, which is most often SEXUALLY transmitted.
I see many similarities in David's embarrassment to ours. We can still learn from him even though ours is "sexual".
Lets look for the similarities, not the differences.
Oh absolutely, I'm not knocking the idea or getting support from a celebrity. Particularly not someone who has bravely dealt with a horrible illness and provided both humour and relief to other sufferers. That's not my intention at all. But we need to be careful before we consider "coming out" to people as POIS sufferers. There are many jobs that would immediately suspect your judgement was constantly impaired and that's the best case scenario where they believe this is a real illness and not a psychological fabrication. Whatever people say about "psychosomatic illnesses being real for the sufferer", they cannot get beyond their belief that the person is suffering from mental illness and thus all their reasoning is potentially faulty.
If they don't believe this is a real illness, they may assume some kind of nervous breakdown. So I think we should postpone the coming out to anybody except close family UNTIL we have an accepted diagnosis that means our sanity cannot be questioned when we say we have this disease.
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Thanks, kurtosis!
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I think this is where the real value of the research lies.
Once we are "defined" we are more like an MS patient and not a mental case
It makes it more official.
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"Mental case"...yes, a perfect way to depict us in the eyes of "the blind professional"
Sheesh. The public will be slow to understand us. But yes, Dave, we need to get research into the hands of DOCTORS first!
Let the understandings begin! ;D
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I think this is where the real value of the research lies.
Once we are "defined" we are more like an MS patient and not a mental case
It makes it more official.
Totally. I have 2 goals in life. 1) to be completely cured of this thing or at least so cured that I never have to worry about it again. 2) for the illness to be an accepted diagnosis in which case I can tell people that I have/had that and how I'm dealing with it. I'm happy to take that risk but only when I have a diagnosis I can point to. As it is, I could have anything from hypogonadism (seems unlikely) to hypothyroidism (seems more likely) to viral/bacterial/parasitic infection. And lots of stuff in between like genetic disorders in the synthesis of proteins. The problem is that any disease that affects homeostasis of hormones or neurotransmitters can appear the same.
If I get diagnosed with something (even if it's not specifically POIS) then that's positive . The only thing I know is that I have a gluten sensitivity which can be associated with thyroid problems as there's a huge chemical similarity between some of the thyroid tissue and one of the proteins in gluten. The idea is that your body may start off producing antibodies against gluten proteins but these may attack thyroid tissue producing a hypothyroid effect. Whether this could lead to the kind of problems we're seeing with POIS, I don't know. But for a disease to be rare, all it would take would be one problem that's compounded with another problem thats rare (a relative concept of course) and then you get weird symptoms.
POIS is an interesting name for this as it implies it's a syndrome. It may remain a syndrome without a clearly understood aetiology or, hopefully, it will progress to being a fully understood disease in which case the name would have to change. But progressing to the "disease" stage could be really difficult as that would mean that we have clear understand of the causes of the disease, its mechanism of action and the physiological changes it produces. There is still some stigma attached by doctors to syndromes (unfortunately as the name syndrome does not deny the physiological effects) but nobody is going to argue with a diagnosis of a disease. This may be a long road but I look forward to both diagnosis and cures so nobody has to have their lives ruined by this illness again.
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In light of all of this everybody, have a look at the Research Fund Total.
It was recently upped by $1000 in ONE donation! Congratulations to the donor who ever (s)he is and congratulations to the forum.
$1000 doesn't come easy! I can't express how much it means to see it come in.
$13,512. I remember when we worried if it would reach $2000!
Thank you everybody!
We need our name, the name of POIS or POID :D (for disease!) on the board, and this will do it.
We will, one day, walk into the doctor's office and say, "I feel like CRAP after orgasm doc!", and he will say,
Ahhh yes, you have POIS, take one of these 2 times a day, and call me in 2 wks.
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Beautifully said, Daveman! Thank you, $1,000 Donor!
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I look forward to both diagnosis and cures so nobody has to have their lives ruined by this illness again.
kurtosis, this is exactly what has kept me involved with the forums since 2007.
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(http://ecx.images-amazon.com/images/I/51tOdUoZw3L._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_.jpg)
As a start, David is making available to you all for free: his 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.
I'm sorry: I know that your privacy (sending in your physical mailing address) can be an issue! (It ALWAYS has been for me.)
One idea: use business address?
Another: use your initials only?
Another: use a box number?
Go through NORD? (nordnurse would have to approve this one)
Any ideas to circumvent this, I - and Squiggy - would be happy to oblige.
The book will make you laugh at your own privacy issues.
Better than dying from them IMHO!! ;D ;D ;D ;D
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As a start, David is making available to you all the free 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.
I'm sorry: I know that your privacy (sending in your physical mailing address) can be an issue! (It ALWAYS has been for me.)
One idea: use business address?
Another: use your initials only?
Another: use a box number?
Go through NORD? (nordnurse would have to approve this one)
Any ideas to circumvent this, I - and Squiggy - would be happy to oblige.
The book will make you laugh at your own privacy issues.
Better than dying from them IMHO!! ;D ;D ;D ;D
You could always setup a temporary PO Box number.
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Do you mean like at The UPS Store, where you can create a physical Postal "inbox" (with key to lock/unlock) for just one month?
Or did you mean the Post Office?
I also remember hearing that you can get mail addressed to you as "c/o General Delivery, Hartford, CT 06101" (your own city, state, zip)
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(http://stockfresh.com/files/i/iqoncept/m/64/1981620_stock-photo-help-us-reach-our-goal-speedometer-fundraiser-support.jpg)
$9,270.00 $9,350.00 $10,272.00
$13,512.00 raised!
THANKS, $1,000 DONOR!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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I presented the Selwyn Dexter study to my physician today: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028282/
She found it interesting and wrote me a prescription for a progesterone drug called norethindrone (the US version of norethisterone). I also had labwork ordered for my thyroid, hormones and cortisol levels. I'll post updates on each of these items as I get results.
I followed your exact same path, B_Daniel!
There was excitement at NSF for a while about T/P (combo of progesterone and testosterone). So I became a guinea pig:
http://www.google.com/#hl=en&sclient=psy-ab&q=norethisterone+Dexter+demografx+P%2FT+site:%2F%2Fthenakedscientists.com&oq=norethisterone+Dexter+demografx+P%2FT+site:%2F%2Fthenakedscientists.com&gs_l=hp.3...3114.42163.0.42906.83.66.9.8.8.0.309.10527.0j52j9j1.62.0.les%3B..0.0...1c.1.GXbdK2yzm4U&pbx=1&bav=on.2,or.r_gc.r_pw.r_qf.&fp=acede1ef7df1b691&biw=1067&bih=441
My endo prescribed me norethindrone, but I QUIT AFTER 4 DAYS. Got pretty sick.
You might have a totally different reaction: I wish you the best!!!
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The last donation of (http://dersamurai.files.wordpress.com/2012/06/1000-dollar-us-bill-front.jpg) was a sign of (http://upliftingchrist.files.wordpress.com/2012/06/faith-1.jpg) by someone who contacted me and said he was willing to cover an equal amount of all the donations that come in for the month of October!
So everybody, make your (http://projects.fit.edu/serra/Money.jpg) work for you!
If you make a donation between now and the 31st of October our "SPONSOR" will donate an equal amount.
So your donation of $10 NOW will have the impact of $20, $100 will mean a total of $200 and so on.
So come on everybody,MAKE IT COUNT!!
And a great applause for our "SPONSOR"!
(http://gifsoup.com/webroot/animatedgifs/754962_o.gif)
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IMPORTANT ANNOUNCEMENT!!
We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:
Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine
He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.
Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.
He has a survey at the following URL.
https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ
We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very much more benefit.
This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.
Please help us to find a solution to POIS. Your input here will benefit us all.
Thank you.
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One excitement after another.
When it rains it pours.
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IMPORTANT ANNOUNCEMENT!!
We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:
Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine
He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.
Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.
He has a survey at the following URL.
https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ
We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very much more benefit.
This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.
Please help us to find a solution to POIS. Your input here will benefit us all.
Thank you.
Nice work.
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As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.
Not true for me.
Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!
Finally to say, wonderful life after 7 years.
Congratulations!
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As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.
Not true for me.
Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!
Finally to say, wonderful life after 7 years.
Congratulations!
I think what happens is that we THINK (really want) the medicines to work, so they seem to. And it depends so much on "chance". POIS has it's ups and downs, weather, amount of sleep, nutritional condition, so many factors, and so many of them we don't related directly to POIS, maybe because we don't take detailed notice of all the factors.
So one day, we have all the stars lined up, and by chance, also try some remedy. WOW, it seems to work! How many times have I said that! Then the bottoms falls out when the weather changes or some other factor that I haven't been keeping track of, changes.
Tests of remedies is complex! We can't realistically do it without a step by step protocol. Note all initial conditions, limit items being tested, not all changes outside of the testing parameters, and then perhaps even do blind tests with cross-checks.
Sounds like a pain in the butt, and so that's why we don't dedicate a little more time to it. But we're just fooling ourselves if we don't.
The idea is not to be critical or reprimanding, but to bring attention to what it really take to do a test that has any use.
Your testosterone worked because it was administered and controlled by a doctor. You didn't just try it for the heck of it! Or if at least you did, it was still under the control of a doctor who could say, "today it didn't work because of such and such but lets change the dose a bit and keep it up for a bit..." or whatever. At least more control, and entered with a plan and evaluated with understanding.
"A success is not a success without the data and a failure is not a failure with the data!"
This would have to be our motto!
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IMPORTANT ANNOUNCEMENT!!
We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:
Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine
He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.
Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.
He has a survey at the following URL.
https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ
We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very much more benefit.
This questionaire would be a prelude to others by him that seek to delve more deeply into remedial effectivity related to POIS type groupings.
Please help us to find a solution to POIS. Your input here will benefit us all.
Thank you.
WOW! Grateful that Juan I.Martínez-Salamanca is interested in POIS. Thanks Daveman for the heads up. I THINK ITS ESSENTIAL THAT WE ALL COMPLETE THIS QUESTIONNAIRE. We can't bang on about wanting research if we don't partake in research opportunities when they are offered! A HAND HAS BEEN EXTENDED IN OUR DIRECTION, PLEASE DON'T MISS THIS OPPORTUNITY FOR YOURSELF AND FOR ALL OF US.
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Thanks to all for recent donations! The recent rise in funds is truly heartening and reflects the tireless hard work and the various amazing outreach efforts there have been here lately
Also...since I don't want to distract from my last post which quoted Daveman's message about Dr. Juan I.Martínez-Salamanca in Madrid, there now follows some repetition: please complete that questionnaire! ;)
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We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:
Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine
He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.
Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.
He has a survey at the following URL.
https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ
We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very much more benefit.
Great news! I just filled it out.
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Me too. EVERYONE SHOULD FILL OUT THIS SURVEY. These are researchers who can help IDENTIFY AND CURE POIS. If we don't engage positively with these and other researchers then word will spread that POIS sufferers don't cooperate with medical researchers and we will never be cured. It's as simple as that. I'm sorry if this sounds harsh but it's how I think.
- Would it be possible to email or message everyone on the forum with a link to the survey?
- And would it be possible for these researchers to share their survey results with other researchers and the forum so we can get some definitive answers on what symptoms everyone is suffering from? (at the minimum).
I can't see why anybody on the forum wouldn't so they should get a few hundred survey entries.
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I just filled in the questionnaire.
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done
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Me too. EVERYONE SHOULD FILL OUT THIS SURVEY. These are researchers who can help IDENTIFY AND CURE POIS. If we don't engage positively with these and other researchers then word will spread that POIS sufferers don't cooperate with medical researchers and we will never be cured. It's as simple as that. I'm sorry if this sounds harsh but it's how I think.
I´ve also filled the survey. I think we are at critical stage. We should move on decisively this month. If some of you had doubts about how much or when give money to our NORD fund, this is your moment to solve them. This wonderful sponsor has given us a very special opportunity to reach our objective before the end of this year. I think everyone should make some effort and give something - It does not matter the amount, but the willingness- to have a GOOD research done. And if you were having doubts to tell the POIS problem to anyone, you should do it now, so this people can also help us with a small donation... that will be multiplied by 2!!
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We have been having very encouraging conversations with a Dr. Juan I.Martínez-Salamanca in Madrid. See below:
Juan I.Martínez-Salamanca, MD PhD, FEBU
Attending Urologist
Department of Urology
Urology Oncology & Sexual Medicine
He has been following POIS for some time, and quite closely follows the line that we have been approaching. He has been active, both in his work and studies with POIS patients and has been supportive AND influential in some of our activities.
Presently he wishes to embark upon a survey of our members, being as we are one of the bigger collections of POIS suffers in the world.
He has a survey at the following URL.
https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ
We recommend and encourage as many as possible to do the survey so that we can begin collecting valuable information
with a professional who very much understands our condition. It is similar to questions that have already been asked, but in his hands, they will be of very much more benefit.
Great news! I just filled it out.
Thanks!!
Please everybody, take 3 minutes to fill out the form. This survey is on the Google system, user friendly, maybe easier to fill out than the one I programmed for us.
Don't know if you will think that it is too basic, but have patience. The Doctor knows what he needs, and there will be follow-up once we have a good base.
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Me too. EVERYONE SHOULD FILL OUT THIS SURVEY. These are researchers who can help IDENTIFY AND CURE POIS. If we don't engage positively with these and other researchers then word will spread that POIS sufferers don't cooperate with medical researchers and we will never be cured. It's as simple as that. I'm sorry if this sounds harsh but it's how I think.
- Would it be possible to email or message everyone on the forum with a link to the survey?
- And would it be possible for these researchers to share their survey results with other researchers and the forum so we can get some definitive answers on what symptoms everyone is suffering from? (at the minimum).
I can't see why anybody on the forum wouldn't so they should get a few hundred survey entries.
Yes we will be Emailing the message to everyone. Up till now, we have been sending individual "messages", but right now there's a LOT going on and we should be able to compose more of an all round informative newsletter of important events.
In case that some have not been getting our mailouts, (they go out between once every week or two weeks), check your SPAM folders, maybe even take us off the "black-list". Otherwise we may have an old EMail address. I have started a WEB based program to allow editing / adding and removing your data for subscription, but alas, time is always the problem.
Meantime anyone desiring to be on (recommended) or off (NOT) the list can PM me for now.
I am sure that we will have access to numbers derived from the survey and I am POSITIVE that the results will contribute to the creation of a well designed research program. We are the BIGGEST access point to POIS information and it behoves us to make it available to those who can really help us. If we do NOTHING else, this we must do!
This information will lead to widening spirals to collect ever more specific and pertinent POIS data.
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We've received two donations today!! Way to GO! One for $100 and another for $50!
So, good start! Thanks to the donors!
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As you aware, POIS is a such a kind that, the medicines work initially, but afterwords the same medicine fails to fight against POIS.
Not true for me.
Testosterone is working _better_ now than when I started TRT (testosterone replacement therapy) 3 years ago!
Your testosterone worked because it was administered and controlled by a doctor. You didn't just try it for the heck of it! Or if at least you did, it was still under the control of a doctor who could say, "today it didn't work because of such and such but lets change the dose a bit and keep it up for a bit..." or whatever. At least more control, and entered with a plan and evaluated with understanding.
Not only that, Dave, but it was a 10-year process for me since the 1st POIS paper came out. I contacted whoever I thought would have a clue, worldwide, in the US, and in Europe. Mostly well known sexologists, most notably Jane Thomas at Johns Hopkins University.
In the 7th year, I finally decided to "pull out all guns" and "shoot" this evil, hideous creature-thing called POIS. I contacted my Harvard biotech pioneer friend and he suggested a major teaching university and world class laboratory. I was reluctant, but desperate enough to follow his advice and the forum's advice - which was to get a full range of hormonal blood tests, which led to a brain MRI -- and many more formalized blood tests. My endocrinologist doctor is a fully tenured top University Professor in Endocrinology and is in a RESEARCH environment because of the university.
My daily (365X) testosterone patches are the result of THOROUGH testing, consultation, and re-testing, with a sympathetic, top ranked,senior endocrinologist-physician and a world class medical laboratory. It did not happen overnight by ANY stretch of the imagination.
No snap of the finger here.
Careful, methodical, validated, adjusted, constantly monitored, and it will continue that way.
And even with all that - in our primitive pre-NORD Grant period - I was lucky.
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Hey everybody, we've received another donation for $50!!
THAT'S THE WAY, KEEP IT COMING.
THANK YOU!
BTW there were 2 for $50 today!
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Just a repeat of the link to Dr. Slamanca's Survey:
https://docs.google.com/spreadsheet/viewform?fromEmail=true&formkey=dFpnckhXRlpLSFAwWXlfQWNkclgtZWc6MQ
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if you get a donation in honour of myself it's because i've just made a mistake, didn't mean self worshipping :)
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if you get a donation in honour of myself it's because i've just made a mistake, didn't mean self worshipping :)
Thanks for donating. ALL donors whould be worshipped ;D
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if you get a donation in honour of myself it's because i've just made a mistake, didn't mean self worshipping :)
Thanks for donating. ALL donors whould be worshipped ;D
hahaha
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if you get a donation in honour of myself it's because i've just made a mistake, didn't mean self worshipping :)
Thank you, boissioq!!
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Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to our most generous SPONSOR!
Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
(http://poiscenter.com/newsletters/2for1.jpg)
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Well the Indiegogo "Campaign" has 43 hours to go.
Many thanks to the two donors who have raised a total of $85.
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Look for our latest mailout! If you haven't received it check you should check your SPAM folder
Time to blast POIS! Let's Go!
(http://poiscenter.com/newsletters/moneyBomb.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Daveman, can I use a prepaid credit card to make a payment at NORD. I cannot put the donation on my own credit cards for reasons I wont specify, but if a prepaid credit card will work at NORD, I can buy the prepaid card in cash and spend it lavishly at NORD.
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Daveman, can I use a prepaid credit card to make a payment at NORD. I cannot put the donation on my own credit cards for reasons I wont specify, but if a prepaid credit card will work at NORD, I can buy the prepaid card in cash and spend it lavishly at NORD.
I'll get back to you!
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Just filled out the survey.
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Daveman, can I use a prepaid credit card to make a payment at NORD. I cannot put the donation on my own credit cards for reasons I wont specify, but if a prepaid credit card will work at NORD, I can buy the prepaid card in cash and spend it lavishly at NORD.
I am told that it shouldn't be a problem. They are handled just like any credit card!
I'm going t o look into getting one!!
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Hey, another donation for $100 has come in, and on a Sunday too!
Way to go! Although I don't know who it is, this person has already donated $400 in quite a short bit of time!
As yo know, this $100 goes toward October's total for doubling!!
YAAYYYYY!
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Wow!!! Hurray!!!
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Look for our latest mailout! If you haven't received it check you should check your SPAM folder
Time to blast POIS! Let's Go!
(http://poiscenter.com/newsletters/moneyBomb.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
THANKS, DAVEMAN!
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(http://img.ehowcdn.com/article-new/ehow/images/a06/v6/p4/employee-fundraising-ideas-1.1-800x800.jpg)
$9,270.00 $9,350.00 $10,272.00
$15,010.00 raised!
THANKS, $100 DONOR!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE YOUR POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)p
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Thank you very much David Landau ["Squiggy" from 'Laverne and Shirley' TV shows] for this generous offer! [edit by Demo: GET SQUIGGY'S FUNNY AUDIO BOOK FREE -- THE ONLY CATCH IS WE NEED TO KNOW WHERE TO MAIL YOU THE CD'S!!]
There always seem to be so many reasons NOT to talk about our problem! I'm sure your "gift" will help us to make an important step in our lives.
I'm going to start "coming clean" from today forward!
Daveman, I showed your post to Squiggy and he said, "Aawwww" in a very appreciative voice!
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(http://ecx.images-amazon.com/images/I/51tOdUoZw3L._BO2,204,203,200_PIsitb-sticker-arrow-click,TopRight,35,-76_AA300_SH20_OU01_.jpg)
As a start, David is making available to you all for free: his 10 chapter audio book set, called "Fall Down Laughing" - pictured above. If you want a set send me a PM with your name+physical mailing address.
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Just filled out the survey.
Thanks, Vincent M.!
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Guys,
I've just donated $150 more.
Together we can make POIS Research a reality!
Thanks again to our SPONSOR for his generosity!
And thank you, Demo and Dave, for the superb work you've been doing all this years!!!
Sincerely,
Mat
(http://www.animated-gifs.eu/website-thanks/0179.gif)
M A T !!
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If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?
Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever! :)
(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Simply click above and scroll down till you see, "Make this a recurring donation"...
THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!
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There was one extraordinarily ignorant and stupid SPAMMer that posted about 40 posts on our forum last night!!
What a waste of his and my time!!
It would help him a lot to know that he gains nothing here. No-one is interested in purses and I don't leave the posts up long enough that they receive any SEO benefit!
Besides I report them the the SPAMMERs database,, so they loose a "good" in large quotes usernames and gateway URLs.
If you see any that I have missed let me know, report to moderator!
I hope to put a more elegant filter as I find time.
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Look for our latest mailout! If you haven't received it check you should check your SPAM folder
Time to blast POIS! Let's Go!
(http://poiscenter.com/newsletters/moneyBomb.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
THANKS, DAVEMAN!
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Any news about the functional MRI study??? It seems to be one of the best investigation to do ! :)
I agree, Habibou!
Rutgers was promising, but they remain more interested in female orgasm functional MRI studies >:( Politics! ???
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Any news about the functional MRI study??? It seems to be one of the best investigation to do ![/size] :)
I agree, Habibou!
Rutgers was promising, but they remain more interested in female orgasm functional MRI studies >:( Politics! ???
Wear a skirt while getting the MRI? :)
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kurtosis, LOL!
;D ;D ;D ;D ;D
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$350 OCTOBER MONEY BOMB! TODAY IS 12 DAYS INTO OCTOBER!
Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to our most generous SPONSOR!
Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
(http://poiscenter.com/newsletters/2for1.jpg)
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There was one extraordinarily ignorant and stupid SPAMMer that posted about 40 posts on our forum last night!!
What a waste of his and my time!!
It would help him a lot to know that he gains nothing here. No-one is interested in purses and I don't leave the posts up long enough that they receive any SEO benefit!
Besides I report them the the SPAMMERs database,, so they loose a "good" in large quotes usernames and gateway URLs.
If you see any [spammer] that I have missed let me know, report to moderator! - button is located at the lower right corner of the post
I hope to put a more elegant filter as I find time.
Sorry you had to go through that, Daveman!
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there are some spammers that dont post at all but have their websites under their profile is there a way to report them.
they are affecting the member count.
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I use stopforumspam.com to moderate each new registration on my own site. I can set my site to email me when a new member registers, so valid ones get online quick. And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.
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there are some spammers that dont post at all but have their websites under their profile is there a way to report them.
they are affecting the member count.
I go through the memberlist deleting that stuff about twice a month.
There are also a bunch that sign on and linger, but don't put any data.
I guess if you see that there are more than a couple you could remind me to do a sweep!
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I use stopforumspam.com to moderate each new registration on my own site. I can set my site to email me when a new member registers, so valid ones get online quick. And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.
Yep, that's what I'm doing, but about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet. I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!
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Hello,
I've never written anything here or on the other forum before as I struggle to talk about it and am quite shy, but I wanted to introduce myself mainly to thank you all for everything you've all done.
To quickly describe myself I'm 23 and I developed pois at the age of 16 (I suffer from cognitive symptoms) but I didn't understand what was happening or make the connection between my symptoms and ejaculation. Very slowly I eventually started to make the connection and I finally discovered that other people have this illness when I found the other forum over two years ago.
Thanks to the work of everyone involved in the forum I was able to learn about pois and to try and manage its impact by preventing symptoms on days when I had a lot on (this definitely benefited both my university work and social life). I also gained hugely by learning about the supplements that have been beneficial; I take fenugreek, gingseng, ginkgo, CoQ10, niacin and recently added vitamin b complex thanks due to the discovery by kurtosis).
Importantly I also learnt about the ways that pois has similarly impacted on other people's lives, which was unbelievably helpful in confirming the difficulty that it has created in mine making me feel much more normal and not at fault. Im not brilliant at expressing myself but I will always be incredibly grateful for this.
I have also in the last few days been able to make another big step in my life thanks to you all. Using the description of pois on the website created, articles that demo kindly emailed me a long time ago, and the fantastic descriptions of what its like to have pois from the reddit and indiegogo campaign, I was able to tell my mum and her partner about this illness. As quite a private person who has always kept pois a secret this was a big step for me and something that I certainly could not have made without the resources and emotional support I get from reading this forum. They were both incredibly understanding so I just want to say thank you so much for giving me the resources and strength to do this.
I understand that much effort has been undertaken to raise funds for the research through NORD (which if I understood correctly the previous forum annoyingly did not support prompting the switch of many people to this forum, myself included :) ) and over $13000 has been raised which is fantastic. My family have helped me donate $80 this evening, although this is less than what some have donated I do hope it helps and we will definitely donate again soon. (We did get a confirmation email but please do contact me if for whatever reason this donation has not gone through)
This is definitely more of an essay than I meant it to be lol, so I will quickly end with saying thank you again to everyone for everything you've done, and although I'd certainly not intend to downplay the huge influence that other people have made, I would like to say a special thank you to demo and daveman who have worked tirelessly for years in getting this forum and the awareness of pois to where it is today. On a personal note the kindness and understanding that you two have both shown when talking about pois has meant a lot to me.
Many thanks
Tom
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Tom: WELCOME ABOARD!!
Please check our comprehensive list of POIS resources for you, right here:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Best wishes!
Demo and Daveman
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My family have helped me donate $80 this evening
Thank you, Tom!!!
$80 on your first post!
And it's Money Bomb Month (October), which means our Sponsor bumps your Donation to $160.00!
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I use stopforumspam.com to moderate each new registration on my own site. I can set my site to email me when a new member registers, so valid ones get online quick. And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.
Yep, that's what I'm doing, but about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet. I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!
Awesome. :) Thank you for working hard to keep increasing POIS awareness. I haven't been here in months, but experiencing POIS right now, it's great to come back to a place that keeps getting better. 8)
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Welcome back, Samir! :)
-
I use stopforumspam.com to moderate each new registration on my own site. I can set my site to email me when a new member registers, so valid ones get online quick. And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.
Yep, that's what I'm doing, but about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet. I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!
Awesome. :) Thank you for working hard to keep increasing POIS awareness. I haven't been here in months, but experiencing POIS right now, it's great to come back to a place that keeps getting better. 8)
Have you seen all the stuff on Niacin and B-Complex. It's got my POIS beat! Almost 0 POIS.
-
Hello,
I've never written anything here or on the other forum before as I struggle to talk about it and am quite shy, but I wanted to introduce myself mainly to thank you all for everything you've all done.
..................
Importantly I also learnt about the ways that pois has similarly impacted on other people's lives, which was unbelievably helpful in confirming the difficulty that it has created in mine making me feel much more normal and not at fault. Im not brilliant at expressing myself but I will always be incredibly grateful for this.
I'm glad you are taking the steps to "come out". I find that you express yourself very well. Very articulate and clearly expressed!
I understand that much effort has been undertaken to raise funds for the research through NORD (which if I understood correctly the previous forum annoyingly did not support prompting the switch of many people to this forum, myself included )
Can you believe that recently we have heard from a member who was posting "thank you's" on the Naked Scientists Forum to those who have donated for the October Money Bomb campaign, and they were asked to REMOVE the message. The message was very controlled so as NOT to promote, but they felt that it was TOO much.
I'm afraid that SERIOUS SCIENCE over there is not REALLY a scenario. What is MORE scientific than REAL Research! I'm sorry if I sound annoyed, but I AM. Scientific Smoke Blowing!
My family have helped me donate $80 this evening, although this is less than what some have donated I do hope it helps and we will definitely donate again soon. (We did get a confirmation email but please do contact me if for whatever reason this donation has not gone through)
No problem. Your donation has been received an placed into the fund.
Many thanks
Tom
Many Thanks to you!
-
$598.00 OCTOBER MONEY BOMB! TODAY IS 13 DAYS INTO OCTOBER!
Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to our most generous SPONSOR!
Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
(http://poiscenter.com/newsletters/2for1.jpg)
You will feel better for doing this.
-
Here's to LIFE (and POIS), with another donation of $18.
GREAT, Keep 'em coming guys!
-
Thank you for the $18 "to Life"!
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Hi Guys!
I have just converted my pledge into real donation, $800 were sent to NORD for POIS research.
Thank you all for making our group a real like-minded activists! I am really happy to be part of our team who have the greatest challenge to solve, that makes us special. We are the first who have this challenge now, but the efforts and results we achieving now will be very important to more and more people in the future.
Victor
THANK YOU, VICTOR!!!
THIS IS A HUGE LEAP FOR OCTOBER'S DONOR DRIVE!
All the best,
DEMO AND DAVEMAN
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Guys,
I've just donated $150 more.
Together we can make POIS Research a reality!
Thanks again to our SPONSOR for his generosity!
And thank you, Demo and Dave, for the superb work you've been doing all this years!!!
Sincerely,
Mat
(http://www.animated-gifs.eu/website-thanks/0179.gif)
M A T !!
Thanks for ALL your help!!
DEMO AND DAVEMAN
-
[/quote]
Can you believe that recently we have heard from a member who was posting "thank you's" on the Naked Scientists Forum to those who have donated for the October Money Bomb campaign, and they were asked to REMOVE the message. The message was very controlled so as NOT to promote, but they felt that it was TOO much.
I'm afraid that SERIOUS SCIENCE over there is not REALLY a scenario. What is MORE scientific than REAL Research! I'm sorry if I sound annoyed, but I AM. Scientific Smoke Blowing!
That's really sad and quite surprising to hear, and its very understandable that your're annoyed. It does amaze me that a science forum would not be interested in being a platform to drive new research, particularly as it would be in their interest to be part of a new scientific discovery. Also as members of the science community, they should know as much as anyone the importance of having controlled experiments carried out by experts with the knowledge to ensure that not only is the treatment safe and controlled, but that it is based on scientific theory. Its quite strange that they were happy with us attempting to find a cure ourselves, which although there has been much success with niacin, vit b complex and other supplements, it does involve much guess work and as such carries a certain degree of risk no matter how careful we are. However in contrast they were not ok with supporting a registered charity in providing experts to safely do the research instead.They were clearly more worried about their rules and red tape than our well being which seems like quite a betrayal by them after all the work yourself demo and many others have done on the forum.
The forum you've created here is fantastic however, and is definitely a much better organised resource. This will make it easier for both researcher's and pois sufferers when learning about pois. It is definitely a better home here :)
Tom
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sorry ive just realised than when I tried to reply to davemans post, its not shown as it normally would for a quote, must've done a bit wrong :P
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I use stopforumspam.com to moderate each new registration on my own site. I can set my site to email me when a new member registers, so valid ones get online quick. And then I don't delete the new spammer accounts, just set them to the ban group making less spammer emails and usernames available. . Might be something worth trying.
Yep, that's what I'm doing, but about 2 to 5 get through per day. Those are banned, reported and deleted! There's another database as well, with the two combined it's better, but haven't done that yet. I get about 60+ filtered (and marked) SPAMMers per day. These are easy to deal with though, just delete them. Also Victor Kons gave me a great idea, but just haven't had time to implement it yet!!
Awesome. :) Thank you for working hard to keep increasing POIS awareness. I haven't been here in months, but experiencing POIS right now, it's great to come back to a place that keeps getting better. 8)
Have you seen all the stuff on Niacin and B-Complex. It's got my POIS beat! Almost 0 POIS.
I have seen some of it. I wish I would've remembered when I went shopping tonight. :( I hovered in the vitamins aisle for a bit and couldn't remember why I was doing that. :(
-
Has anyone ever been tested for Prostate specific antigen (PSA), it is a common test that males over the age of 50 may get to screen for prostate cancer. So, in my health maintenance class I was reviewing things that may alter PSA test results by either lowering or raising them. I found out the PSA is a composition in semen and you can get higher test results if patients have and ejaculation with 2 days before an exam. Higher levels of PSA are also common with BPH (enlarged prostate). Many people, including myself have reported prostatitis for a few days after ejaculation. if there is some kind of duct or shunt in our seminal piping that goes into are blood stream, which has been hypothesized in one theory, then it makes sense that we may have high levels of PSA after ejaculation. I believe that these high PSA levels may cause the immune system to target the prostate, causing the prostatitis that some of us experience.
"Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most healthy men have levels under 4 nanograms per milliliter (ng/mL) of blood. The chance of having prostate cancer goes up as the PSA level goes up.
Ejaculation: This can cause the PSA to go up for a short time, and then go down again. This is why some doctors suggest that men abstain from ejaculation for 2 days before testing.
An enlarged prostate: Conditions such as benign prostatic hyperplasia (BPH), a non-cancerous enlargement of the prostate that many men get as they grow older, may raise PSA levels. "
http://www.cancer.org/cancer/prostatecancer/moreinformation/prostatecancerearlydetection/prostate-cancer-early-detection-tests
Demo and Daveman, I am mostly talking to you older guys, since it is highly unlikely that anyone under 50 has had a PSA test.
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Has anyone ever been tested for Prostate specific antigen (PSA), it is a common test that males over the age of 50 may get to screen for prostate cancer. So, in my health maintenance class I was reviewing things that may alter PSA test results by either lowering or raising them. I found out the PSA is a composition in semen and you can get higher test results if patients have and ejaculation with 2 days before an exam. Higher levels of PSA are also common with BPH (enlarged prostate). Many people, including myself have reported prostatitis for a few days after ejaculation. if there is some kind of duct or shunt in our seminal piping that goes into are blood stream, which has been hypothesized in one theory, then it makes sense that we may have high levels of PSA after ejaculation. I believe that these high PSA levels may cause the immune system to target the prostate, causing the prostatitis that some of us experience.
"Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most healthy men have levels under 4 nanograms per milliliter (ng/mL) of blood. The chance of having prostate cancer goes up as the PSA level goes up.
Ejaculation: This can cause the PSA to go up for a short time, and then go down again. This is why some doctors suggest that men abstain from ejaculation for 2 days before testing.
An enlarged prostate: Conditions such as benign prostatic hyperplasia (BPH), a non-cancerous enlargement of the prostate that many men get as they grow older, may raise PSA levels. "
http://www.cancer.org/cancer/prostatecancer/moreinformation/prostatecancerearlydetection/prostate-cancer-early-detection-tests
Demo and Daveman, I am mostly talking to you older guys, since it is highly unlikely that anyone under 50 has had a PSA test.
Well Sonny, let me put my teeth back in... LOL
No seriously. I was kind of worried about this and hadn't checked the prostate for maybe 5 yrs!! Finally just recently I went to check it and it came out great, maybe even a little low if I remember rightly!. I have prostate swelling when I have POIS, although less nowadays with the niacin. I think, I hadn't had an orgasm nor POIS when I went for the test.
But I'm just one, and I think your idea has interesting merit!
There's gotta be a decent number of us above or near 50. (trying to make myself feel better here ;D ) It would be interesting to hear from the younger ones as well to see if they feel as though they have prostate swelling!
-
$598.00 $1,448.00 OCTOBER MONEY BOMB! TODAY IS 16 DAYS INTO OCTOBER!
Join in on the fun AND sanctity of DOUBLING YOUR OCTOBER DONATION thanks to our most generous SPONSOR!
Skip the next few movies, rock concerts, etc., and take a SOLID gamble on your very own POIS-free life!!!!! Click here and please donate. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
(http://poiscenter.com/newsletters/2for1.jpg)
You will feel better for doing this.
DEMO AND DAVEMAN
-
Has anyone ever been tested for Prostate specific antigen (PSA), it is a common test that males over the age of 50 may get to screen for prostate cancer. So, in my health maintenance class I was reviewing things that may alter PSA test results by either lowering or raising them. I found out the PSA is a composition in semen and you can get higher test results if patients have and ejaculation with 2 days before an exam. Higher levels of PSA are also common with BPH (enlarged prostate). Many people, including myself have reported prostatitis for a few days after ejaculation. if there is some kind of duct or shunt in our seminal piping that goes into are blood stream, which has been hypothesized in one theory, then it makes sense that we may have high levels of PSA after ejaculation. I believe that these high PSA levels may cause the immune system to target the prostate, causing the prostatitis that some of us experience.
"Prostate-specific antigen (PSA) is a substance made by cells in the prostate gland (both normal cells and cancer cells). PSA is mostly found in semen, but a small amount is also found in the blood. Most healthy men have levels under 4 nanograms per milliliter (ng/mL) of blood. The chance of having prostate cancer goes up as the PSA level goes up.
Ejaculation: This can cause the PSA to go up for a short time, and then go down again. This is why some doctors suggest that men abstain from ejaculation for 2 days before testing.
An enlarged prostate: Conditions such as benign prostatic hyperplasia (BPH), a non-cancerous enlargement of the prostate that many men get as they grow older, may raise PSA levels. "
http://www.cancer.org/cancer/prostatecancer/moreinformation/prostatecancerearlydetection/prostate-cancer-early-detection-tests
Demo and Daveman, I am mostly talking to you older guys, since it is highly unlikely that anyone under 50 has had a PSA test.
Since I began my testosterone replacement therapy, I've been taking annual PSA's.
All normal thankfully. :)
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See the Countdown Timer for POIS' OCTOBER MONEY BOMB!
http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB
Demo and Daveman
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Guys,
I've just donated $150 more.
Together we can make POIS Research a reality!
Thanks again to our SPONSOR for his generosity!
And thank you, Demo and Dave, for the superb work you've been doing all this years!!!
Sincerely,
Mat
(http://www.animated-gifs.eu/website-thanks/0179.gif)
M A T !!
Thanks for ALL your help!!
MAT IS THE CREATOR AND DEVELOPER OF 2 VERY IMPORTANT POIS RESOURCES!!
1. POIS' YouTube Channel
2. POIS information website
See http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
DEMO AND DAVEMAN
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(http://i858.photobucket.com/albums/ab143/demografx/145F18E8-8E80-435E-817B-9CB4C1A11CDE-614-000000611E317931.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/CE2839EB-5E6E-4DE2-80B8-4F576F20E398-614-0000008C93770FC0.jpg)
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Hey we're in the news, LOL!!
BTW another $50 donation came in!! Worth a hundred!!
This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!
Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!
Thanks Mr. Donor!
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(http://img.ehowcdn.com/article-new/ehow/images/a06/v6/p4/employee-fundraising-ideas-1.1-800x800.jpg)
$9,270.00 $9,350.00 $10,272.00
$15,010.00 raised!
THANKS, $50.00 DONOR!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE YOUR POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)p
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See the Countdown Timer for POIS' OCTOBER MONEY BOMB!
http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB
Demo and Daveman
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Hey we're in the news, LOL!!
BTW another $50 donation came in!! Worth a hundred!!
This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!
Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!
Thanks Mr. Donor!
This $50 donation was from russian forum member - POISman.
Thank you POISman, so much!!!
Victor
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Hey we're in the news, LOL!!
BTW another $50 donation came in!! Worth a hundred!!
This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!
Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!
Thanks Mr. Donor!
This $50 donation was from Russian forum member - POISman.
Thank you POISman, so much!!!
Victor
(http://www.emofaces.com/en/buddy-icons/r/russia-flag-waving-buddy-icon-animated.gif)
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Hey we're in the news, LOL!!
BTW another $50 donation came in!! Worth a hundred!!
This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!
Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!
Thanks Mr. Donor!
This $50 donation was from russian forum member - POISman.
Thank you POISman, so much!!!
Victor
And thank you so much Victor for your help from your side of the world.
I wish I could read and write Russian to have a better look at your forum.
My thanks to your members for their participation in the POIS effort! We are all in this together.
-
Hey we're in the news, LOL!!
BTW another $50 donation came in!! Worth a hundred!!
This one put us over the $15,000 mark. With the sponsor's part put in that puts us OVER half way!!
Hey Demo, this is cause for some whoopla and fanfare!! Get out your graphics!!
Thanks Mr. Donor!
This $50 donation was from russian forum member - POISman.
Thank you POISman, so much!!!
Victor
And thank you so much Victor for your help from your side of the world.
I wish I could read and write Russian to have a better look at your forum.
My thanks to your members for their participation in the POIS effort! We are all in this together.
We all are together, thanks for encouragement Dave!
Victor
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My mother made a donation of 200$ and my father one of 300$ for a total of 500$ for NORD research :)
Message for everypeople willing to donate : benefit from the SPONSOR so that we convert our pledges into real research and the 33.500 $ is reached this month !
(http://img.ehowcdn.com/article-new/ehow/images/a06/v6/p4/employee-fundraising-ideas-1.1-800x800.jpg)
$9,270.00 $9,350.00 $10,272.00
$15,510.00 raised!
THANKS, HABIBOU & FAMILY!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE YOUR POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)p
-
See the Countdown Timer for POIS' OCTOBER MONEY BOMB!
http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB
Demo and Daveman
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Hi Guys,
I think at this moment we will have more than $33 500 if all the pledges will be fulfilled. Remember we pledged to donate if the sum of donations and pledges will be $33 500, it is the case now. Thats why - its time for the action!
Victor
-
(http://stockfresh.com/files/i/iqoncept/m/64/1981620_stock-photo-help-us-reach-our-goal-speedometer-fundraiser-support.jpg)
$9,270.00 $9,350.00 $10,272.00
$16,610.00 raised!
THANKS, NEW $1,000 DONOR!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
-
Hi Guys,
I think at this moment we will have more than $33 500 if all the pledges will be fulfilled. Remember we pledged to donate if the sum of donations and pledges will be $33 500, it is the case now. Thats why - its time for the action!
Victor
Victor, thank you for reminding us!
-
I just donated 50$ more, every grain of sand counts!
-
I just donated 50$ more, every grain of sand counts!
Observer you're the BEST!
Putting total up right now.
-
I just donated $50 more, every grain of sand counts!
(http://gifsoup.com/webroot/animatedgifs1/1111336_o.gif)
(http://assets0.ordienetworks.com/images/GifGuide/clapping/taxidriver.gif)
Daveman applauding ! (Robert de Niro is posing as Daveman)
-
See the Countdown Timer for POIS' OCTOBER MONEY BOMB!
http://www.timeanddate.com/countdown/generic?iso=20121031T00&p0=403&msg=POIS+OCTOBER+MONEY+BOMB
Demo and Daveman
-
People, this month (October) may be the biggest opportunity someone could give us to make a huge difference in our lives.
We could be closer than ever to start a serious and dedicated research to cure POIS.
Think on the following things for a minute:
What would you do to get rid of POIS?
What could you do if you were POIS free… forever?
Think on your family, your friends, your girlfriend, your job.
How much money and time have you wasted because POIS is present all the time?
This month someone is giving us the opportunity to research for a POIS free life by duplicating each dollar we donate.
Don’t wait any more, do yourself a favor and donate to NORD!
NORD Research Donations webpage:
https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3
Kind Regards,
Mat
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Just made a donation of 50$ on a prepaid credit card at 9:45 PST. Daveman or Demo can one of you confirm that this transaction went through. I have 200$ more of prepaid credit cards that I bought, but I just want to make sure this worked before I use all of them.
-
just put the rest of the cards on there anyways, hope there is not a problem
-
Just made a donation of 50$ on a prepaid credit card at 9:45 PST. Daveman or Demo can one of you confirm that this transaction went through. I have 200$ more of prepaid credit cards that I bought, but I just want to make sure this worked before I use all of them.
I'm sure it will be fine, but of course we will check anyways. Our special NORD atache has been out of the office, but should be back today.
I think it would have given a problem at the time of application if it were not to go through.
But we will check it for sure.
Thanks lauracostis in advance.
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just put the rest of the cards on there anyways, hope there is not a problem
Everything is fine, the charges went through without a problem!
Thank you very much. Your donation is now added to the sum for Oct.
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just put the rest of the cards on there anyways, hope there is not a problem
Everything is fine, the charges went through without a problem!
Thank you very much. Your donation is now added to the sum for Oct.
thank you for checking on that for me
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THANK
YOU
LAURACOSTIS!!!
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I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.
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Vandemolen, when I spoke with Dr Waldinger, he had no idea why testosterone works for my POIS.
I think testosterone replacement therapy (TRT) hastens (speeds up) the semen-regeneration process in cases like mine.
I have been POIS-free for 3 years in my opinion because semen now regenerates quickly after ejaculation.
When my regeneration was very slow, my POIS was terrible.
I realize that regeneration-speed and POIS might be associative, not causative.
And I am speaking for my case only. But I do not see a connection between stress and testosterone. TRT has actually made me more anxious, and my doctor has prescribed to counteract the anxiety effect of testosterone for me.
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Hi All,
There's been a lot of research in the past few years on the general anti-inflammatory effects of testosterone (and also estrogen and progesterone). The theory is that these hormones are neuro-protective and that they may decrease neuro-inflammation. They're being studied as treatments for neurodegenerative disorders and for neuropathy treatments.
Here's just one link of many, many article abstracts about this -- http://www.ncbi.nlm.nih.gov/pubmed/22966132.
So -- perhaps part of the reason that TRT helps some of you is its anti-neuroinflammatory activity.
Stef
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Hi All,
There's been a lot of research in the past few years on the general anti-inflammatory effects of testosterone (and also estrogen and progesterone). The theory is that these hormones are neuro-protective and that they may decrease neuro-inflammation. They're being studied as treatments for neurodegenerative disorders and for neuropathy treatments.
Here's just one link of many, many article abstracts about this -- http://www.ncbi.nlm.nih.gov/pubmed/22966132.
So -- perhaps part of the reason that TRT helps some of you is its anti-neuroinflammatory activity.
Stef
There was a study on rats cells in vitro that suggested testosterone, beyond a threshold value, appeared to inhibit histamine release from mast cells. Estradiol and Oestrogen seem to augment it.
http://www.ncbi.nlm.nih.gov/pubmed/1384869
Also a more relevant paper on people with asthma with some useful references.
http://adc.bmj.com/content/88/7/587.full
"Oestrogen enhances, while testosterone inhibits eosinophil release. Testosterone is a powerful inhibitor of histamine."
This may be what Jon/JFerr described when he said that his POIS symptoms seriously improved when his testosterone nearly doubled but that it dipped again and his POIS symptoms resurfaced. The same for Daveman.
Women are known to get a "sex flush" following the histamine release of an O. This is much less common in men even though mast cells accumulate in the testes for histamine release to achieve O. I think the reason it's much less common in men is the inhibiting effect of testosterone.
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two words in the first paper describe pois best, "neuroimmunoendocrine disorders". i think that covers it. now do we have a doctor that study all three specialties.
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This was not dr. Waldinger, but my allergist who said this.
Vandemolen, when I spoke with Dr Waldinger, he had no idea why testosterone works for my POIS.
I think testosterone replacement therapy (TRT) hastens (speeds up) the semen-regeneration process in cases like mine.
I have been POIS-free for 3 years in my opinion because semen now regenerates quickly after ejaculation.
When my regeneration was very slow, my POIS was terrible.
I realize that regeneration-speed and POIS might be associative, not causative.
And I am speaking for my case only. But I do not see a connection between stress and testosterone. TRT has actually made me more anxious, and my doctor has prescribed to counteract the anxiety effect of testosterone for me.
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I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.
Not really trying to be negative, but if I had so much stress that I couldn't feel POIS, I don't think that I would feel "better off", much less cured.
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two words in the first paper describe pois best, "neuroimmunoendocrine disorders". i think that covers it. now do we have a doctor that study all three specialties.
Best place to go may be neuroscientists researching diseases like Parkinsons and Alzheimers. The reason being that these disorders are obviously "neuro"-logical but may have immunological and endocrinological components.
Why might they be interested in POIS?
Because some of our symptoms including cognition problems, shakes, chills etc. resemble the effects of some of these diseases but we only have them for a short time (or so we hope :)). So finding out the POIS reaction that produces this state may be interesting in understanding other diseases. Just a thought.
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This was not dr. Waldinger, but my allergist who said this.
Vandemolen, when I spoke with Dr Waldinger, he had no idea why testosterone works for my POIS.
I think testosterone replacement therapy (TRT) hastens (speeds up) the semen-regeneration process in cases like mine.
I have been POIS-free for 3 years in my opinion because semen now regenerates quickly after ejaculation.
When my regeneration was very slow, my POIS was terrible.
I realize that regeneration-speed and POIS might be associative, not causative.
And I am speaking for my case only. But I do not see a connection between stress and testosterone. TRT has actually made me more anxious, and my doctor has prescribed to counteract the anxiety effect of testosterone for me.
If Dr Meinardi OR Dr Waldinger, it doesn't matter who: the medical "opinion" that testosterone creates so much stress that it helps POIS is...nonsense.
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I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.
Not really trying to be negative, but if I had so much stress that I couldn't feel POIS, I don't think that I would feel "better off", much less cured.
You are factual, Daveman. Not negative. You summarize this better than me!
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two words in the first paper describe pois best, "neuroimmunoendocrine disorders". i think that covers it. now do we have a doctor that study all three specialties.
Best place to go may be neuroscientists researching diseases like Parkinsons and Alzheimers. The reason being that these disorders are obviously "neuro"-logical but may have immunological and endocrinological components.
Why might they be interested in POIS?
Because some of our symptoms including cognition problems, shakes, chills etc. resemble the effects of some of these diseases but we only have them for a short time (or so we hope :)). So finding out the POIS reaction that produces this state may be interesting in understanding other diseases. Just a thought.
Excellent thought, kurtosis.
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I talked to my doctor about the testosterone theory. He said that the reasons why some of us get relief by testosterone is because of the stress level. He said that if your body is in stress you will not feel smaller pains. For example, if a lion runs after you, you will not feel you have a headache. The testosterone brings the body in a stress level. So if the POIS comes up you will not feel it. He said that it would be good if there were more studies about the use of testosterone on the long term. What are the effects on the lungs and other organs? That was my doctors explanation.
Not really trying to be negative, but if I had so much stress that I couldn't feel POIS, I don't think that I would feel "better off", much less cured.
Hi All,
I'm also not trying to be negative.
NOTHING is known about POIS, so how can anyone here, myself definitely included, know how TRT (or niacin) helps some with POIS?
Van -- it sounds (to me) like your doc was referring to the dangerously high doses of testosterone (and other steroid hormones) taken illegally by athletes to enhance performance. That's what allows them to push their sport to the max without noticing the pain and damage they're doing to themselves.
Demo reports wonderful success with TRT, despite his testosterone levels having been within normal limits when his endocrinologist agreed to try start giving it to him in small but increasing doses. I remember him saying that he had to really persist until his endocrinologist agreed, and that it was prescribed for him very cautiously. As his dose was increased, his POIS began to diminish to the point of GONE WITH THE WIND.
Van -- re: what your doc said about TRT causing such a high-stress sensation that POIS won't be noticed -- I'm thinking that what he said vs what he meant, and/or how he interpreted what you asked -- might be different things.
Men who need TRT -- for whatever health reason -- do report eventually feeling alive and well for the first time in years. They don't feel stressed -- they feel the opposite. When needed, TRT lifts depression, increases muscular strength (increases it to normal muscular strength), may improve the lipid profile (cholesterol, etc.) and -- maybe not so great for POIS -- increases libido. With respect to POIS, possibly the most significant recent findings re: testosterone is that there is evidence from scientific studies that it may decrease neuro-inflammation, and may even be neuro-protective.
***This is not a suggestion for everyone with POIS to go on TRT!!!! It's got definite side-effects and risks and is not to be thought of as an easy/safe fix. Demo is being carefully monitored by his doc, and his dose has been adjusted over the three years or so that he's been taking it.
Something within Demo told him that TRT might help him -- and he persisted with good physicians. Happily TRT works wonderfully for him.
VM -- I think there's a high likelihood that you doc was possibly thinking "anabolic steroids" -- like WWE wrestlers and athletes take illegally when they are "doping" to increase their athletic performance, a la Lance Armstrong.
Again -- no criticism is meant here.
Eventually with research, POIS will be understood.
As an aside, I am astonished at the donations this group has given for October!! What amazing good fortune for all of you that a generous sponsor came forward, and that so many of you responded in kind. :-)
Stef
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Thanks for clarifying, Stef!
My endocrinologist says "supraphysiologic doses" of testosterone are often taken by athletes. Dangerously. Stress? Sure! With 5x the normal dose!!!
Please let me clarify my story. My T levels were LOW initially. When they got to normal range with TRT - I felt better. But I was greedy after suffering POIS so miserably for 30++ years, so I asked for and was approved for a 50% higher dose (from 10mg daily Androderm to 15mg).
That worked! (For ME, I am not promoting TRT for anyone but myself. We are all different.)
After 2+ years of this, I reduced to 8mg daily. Unlike my other "cures", TRT kept improving my POIS steadily. I felt confident enough after 2+ years to experiment with a lower dose.
I credit my success to a desperate phone call I made to Dr Petr Weiss, a sexologist in the Czech Republic, recommended by Kate Thomas, from Johns Hopkins University in 2003.
Dr Weiss *firmly* insisted that TRT was my solution for POIS.
Kate Thomas was recommended by a Sexual Medicine doctor I saw on Larry King Live CNN, who was yet another one of MANY desperate phone calls from me shouting and screaming for help with my POIS! ;D
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Demo, if TRT was damaging you in any way then surely your doctor would know. I presume that they're monitoring you for any adverse affects such as reduced testicular function and liver problems. These have been found in weightlifters who used huge amounts (as you point out) of exogenous testosterone. If you're not suffering any adverse affects then I don't see what the problem is.
Testosterone has been shown to reduce histamine release and inflammation. Long term inflammatory illness appears to strain the body as it must divert pregnenolone into the production of cortisol rather than testosterone. So long term inflammation actually reduces Testosterone levels. This may actually increase the inflammation problem as the body can't produce enough testosterone.
Neurological inflammation is a very bad thing. Bad for long term mental health and cognitive ability in later life. If you feel you can't think straight because of POIS then stopping that is an imperative. TRT monitored by a doctor is a very responsible measure in that light and it's arguably safer than repeated use of synthetic corticosteroids to reduce inflammation.
I'm all for TRT and/or bio-identical hormone supplementation (pregnenolone or DHEA) IF it's supervised by a doctor.
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Thank you, kurtosis!
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...Men who need TRT -- for whatever health reason -- do report eventually feeling alive and well for the first time in years. They don't feel stressed -- they feel the opposite. When needed, TRT lifts depression, increases muscular strength (increases it to normal muscular strength), may improve the lipid profile (cholesterol, etc.)...
Stef, this was such a pleasantly unexpected surprise I saw with TRT! Some of the above almost immediately.
Especially the depression lift! :)
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Neem didn't have any effect at all on me. I took one capsule daily for almost 2 months. My lazy version of SLIT also yielded zero results for me after about 3 months so I've given up on that. I'll update my experiences with these two trials in my treatment profile when I get a chance. I was thinking of trying a version of Kurtosis's method next, but his is focused mainly for cognitive issues and I want to focus on my joint pain, back pain, and eye burning for my next treatment trial.
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Vincent, thanks for reporting!
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Neem didn't have any effect at all on me. I took one capsule daily for almost 2 months. My lazy version of SLIT also yielded zero results for me after about 3 months so I've given up on that. I'll update my experiences with these two trials in my treatment profile when I get a chance. I was thinking of trying a version of Kurtosis's method next, but his is focused mainly for cognitive issues and I want to focus on my joint pain, back pain, and eye burning for my next treatment trial.
Look into wobenzym one guy said it help his pois by alot. And Wobenzym claims it reduces inflammation and can help people with arthiritis.
Wobenzym contains groups of digestive enzymes.
not doctor continue at your own risk ;D
In summary of treatments you will find how to use it.
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THANK
YOU
LIMEJUICE!!!
$1,000.00!!!
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Thanks for the wobenzym suggestion, CertainlyPOIS. I'll look into it.
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I updated my treatment summary (here) http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513 to include home-remedy type methods I've found helpful to lessen fatigue, induce sleep at night, relieve other POIS symptoms, and solve another problem I had with pulling my hair out of my head (side effect from prozac). I'll paste the updated section here as well:
Carrots: Eating one carrot a day improves my cognitive function & eye burning a barely noticeable amount. Doesn't work as well as the other supplements.
Salt Water: Relieves a tiny bit of my eye pain and may improve cognitive function. A teaspoon of iodized salt mixed into a glass of water.
Vaseline, tiger balm, pain relieving creams, olive oil- Helps joint pain and eye burning (via moisturization)
Leave-in-Conditioner- Helps scalp irritation and hair pulling.
Mid-day Nap/ Meditation- Helps fatigue later in day.
Avoiding electronic entertainment or any activities that cause high pleasure spikes: Helps balance my emotions. For example if I watch a movie early in the day I will be less motivated to perform chores or less pleasurable productive activities because those activities will seem much less enjoyable compared to the movie.
Avoiding computer screen 2 hrs before bed: Helps induce sleep. Reading over boring material during these 2 hrs also helps induce sleep.
Bread & butter: Right before bed, helps induce sleep.
Milk: Right before bed, helps induce sleep.
Walking/Light exercise: If done early or mid-day helps induce sleep later that night.
Brief Cold exposure: Walking outside in winter in a t-shirt for 10-15min or taking a cold shower can induce alertness and reduce libido. It might also reduce inflammation cuz alternating hot/cold is known to have that effect.
Method used to stop pulling hair out of head: Stretching my toes apart & massaging my feet is equally pleasurable to pulling hair out of my head and keeps my hands busy.
I realize several of these are common sense and others are personal problems of mine, but the silent readers might also have those problems. Also I think we tend to get so focused on magic cure-all type things that we sometimes forget the smaller healthy natural steps we can take to relieve our symptoms. Hang in there guys.
Also I updated some of the treatments that weren't helpful for me:
Unhelpful Treatments:
Fluoxetine(Prozac): Just made me tired and lose hair. Increased all POIS symptoms slightly.
Venlafaxine(Effexor): Caused fatigue, bone pain, heart pain, and knee pain. The other side effects resolved, but my knees still hurt months later. Residual slight knee pain continues to this day (almost a year later) and is likely permanent.
Neem: Took one capsule for almost 2 months with no effect.
SLIT: Lazy version in which I just held pure semen under tongue for 5 min and swallowed. About 3 months almost every night. No effect.
NSAIDS/Tylenol: Zero effect.
Valerian: Didn't decrease my anxiety or help me sleep. No effect.
Kava: No effect
L-theanine: No effect.
Gaba: No effect, but only tried a few pills.
Zinc: Cheap store version. No effect.
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Hi Vincent M. Good to hear from you.
And thanks for the updates!
Seem like common sense things, but when combined every little bit helps. Sometimes the nose in front of the face
is not seen!! :)
thx
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Yes, thanks for the update Vincent M. Those are very good tips!
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Thank you, Vincent M!
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Thanks for clarifying, Stef!
My endocrinologist says "supraphysiologic doses" of testosterone are often taken by athletes. Dangerously. Stress? Sure! With 5x the normal dose!!!
Please let me clarify my story. My T levels were LOW initially. When they got to normal range with TRT - I felt better. But I was greedy after suffering POIS so miserably for 30++ years, so I asked for and was approved for a 50% higher dose (from 10mg daily Androderm to 15mg).
That worked! (For ME, I am not promoting TRT for anyone but myself. We are all different.)
After 2+ years of this, I reduced to 8mg daily. Unlike my other "cures", TRT kept improving my POIS steadily. I felt confident enough after 2+ years to experiment with a lower dose.
I credit my success to a desperate phone call I made to Dr Petr Weiss, a sexologist in the Czech Republic, recommended by Kate Thomas, from Johns Hopkins University in 2003.
Dr Weiss *firmly* insisted that TRT was my solution for POIS.
Kate Thomas was recommended by a Sexual Medicine doctor I saw on Larry King Live CNN, who was yet another one of MANY desperate phone calls from me shouting and screaming for help with my POIS! ;D
Thanks for clarifying, Demo. I really did think that you started with a low normal testosteone level!
As an aside -- while I have momentary access to a computer this evening -- we were HAMMERED by Hurricane Sandy here in Connecticut. Huge oaks and poplar trees -- many a few hundred years old -- are now down on the ground in various places. There's no electricity at our home (no heat, hot water, water, lights, etc).
I've always hated camping -- but my husband and I are camping out at home!!!! Using flash lights, candles, and the fire place.
NO -- it's not romantic.
I hope none of you experienced Mother Nature's fury -- this was mean!
Stef
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Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?
Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever! :)
(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Simply click above and scroll down till you see, "Make this a recurring donation"...
THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR "FINAL STRETCH!"
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Recent studies on the anti-inflammatory properties of prostaglandin D2 (PGD2) show that high levels are associated with the end or finalization of the inflammatory process. PGD2 is the cytokine that causes the flush from niacin. Studies show that low levels of PGD2 are present at the initiation of the inflammatory process and high levels are present at the termination of the inflammatory process. It is believed that increased levels of PGD2 metabolites block the production of "nuclear factor kappa B", which is a protien that initiates and maintains the entire inflammatory process. It is possible that some of the POIS patients who get relief from niacin may be pre-blocking the inflammatory process via this process.
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Recent studies on the anti-inflammatory properties of prostaglandin D2 (PGD2) show that high levels are associated with the end or finalization of the inflammatory process. PGD2 is the cytokine that causes the flush from niacin. Studies show that low levels of PGD2 are present at the initiation of the inflammatory process and high levels are present at the termination of the inflammatory process. It is believed that increased levels of PGD2 metabolites block the production of "nuclear factor kappa B", which is a protien that initiates and maintains the entire inflammatory process. It is possible that some of the POIS patients who get relief from niacin may be pre-blocking the inflammatory process via this process.
There are also some papers which say that high levels of PGD2 may inhibit histamine release. That may be part of PGD2's role in the inflammation process. A rate limiter on histamine release. There's some discussion about this elsewhere on the site. A niacin flush may prepare the way for a safer O.
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Levitra has worked for me at times. It is a PDE 5 inhibitor. Any ideas here why this has mysteriously (intermittently) helped my POIS?
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In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
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In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
This is not advocacy, merely information.
http://www.sciencedaily.com/releases/2008/07/080720222549.htm
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i tried it before and after O but didn't help
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In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
here in washington state medical marijuana is already legal, but on tuesday a new marijuana law was passed in washington making marijauna legal for recreational use. It will be sold by the state to any individual 21 years and older. However, we will probably be sued or attacked by the federal government for this.
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Lauracostis, you'll be able to tell your grandchildren you were at the forefront of The New Civil War!
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i tried it before and after O but didn't help
Some people are allergic to it and it triggers histamine release. For others it may decrease inflammation and/or histamine. For the former group it may make POIS worse :)
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THANK
YOU
TO OUR GREAT
FRIEND, DONNAH,
FOR DONATING YESTERDAY!!!
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:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)
Way to go everybody in October. Our 2 for 1 promotion was SPECTACULAR!
Our dream has become a REAL reality. For so long the going has been so slow, like we were
never going to get there, but now we can actually see the light at the end of the tunnel.
We know you've all stretched and pushed to make your donation count. It’s been hard, but you
have to finally feel GREAT about it. And especially when the research gives us a real name, and definition,
and a direction, if not solution to this nightmare.
And a special thanks to our sponsor, who is just one of us. A regular guy who wants to do something about
POIS. Without him, we’d still be back there waiting for things to happen.
Everybody, our semi-official total right now is...
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$24,735.00!! Can you believe it!!!???
We are just waiting for the last of the sponsor’s money to officially come in to make this total.
Thank you all again, and CONGRATULATIONS!!
Daveman and demografx
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I've gotten a few who ask if there's any problem with taking Cialis or Viagra with niacin. (I have this friend ;D ) who needs niacin for POIS treatment AND something to help with erections...
Are they compatible? Anybody know?
Edit: A quick check on internet indicates that the combination with any of the "enhancers" is not recommended without doctor supervision. It's not just that it could be a good idea, nor even that it is prohibited, but certain elements could cause the Viagra to be twice a strong for instance, or lower BP to very low levels. Sometimes it is possible to do if "competing medications" are moderated... but it requires the knowledge of a doctor to say IF it's possible and by how much (which way)
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Daveman, I would add Levitra to the same category as Cialis and Viagra.
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I went with the Dr. yesterday and I asked him if I can take cialis and niacin at the same time and he said that is not remommended because the combination can have a problem with very low blood pressure, he said that I can take the cialis and wait 5 or 6 hours before I take niacin, I had very bad alergy and he gave me a shot that last more or less one month, I am going to check what effect it has on my pois during that time.
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I went with the Dr. yesterday and I asked him if I can take cialis and niacin at the same time and he said that is not remommended because the combination can have a problem with very low blood pressure, he said that I can take the cialis and wait 5 or 6 hours before I take niacin, I had very bad alergy and he gave me a shot that last more or less one month, I am going to check what effect it has on my pois during that time.
Thanks, good tip. So that means you can't try the Cialis / niacin combo for a month?
Let me know how it turns out!!
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Wikipedia POIS entry for our Russian friends!
http://ru.m.wikipedia.org/wiki/POIS#_
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According to the Dr. I can take cialis and after 4 or 5 hours I can take Niacin., last Firday he gave me a shot for alergy and some medication that I can take 3 or 4 times/day, I had an O last Saturday and I my pois seems to be about only 30% of what I used to have, I didn't try the niacin becasue I had a big dinner too late, I am going to try the Cialis/Nicin and the alergy medications but I am going to monitor my BP, I am going to start using low dose of niacin then if no effect happens on low BP I am going to increase some.
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Thank you for the $150.00 donation last night!
-
If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?
Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever! :)
(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Simply click above and scroll down till you see, "Make this a recurring donation"...
THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR "FINAL HOME $TRETCH!"
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-
In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
here in washington state medical marijuana is already legal, but on tuesday a new marijuana law was passed in washington making marijauna legal for recreational use. It will be sold by the state to any individual 21 years and older. However, we will probably be sued or attacked by the federal government for this.
Laurac, if and when the suing and attacks die down, I'd like to see POIS researchers investigate medical marijuana for its POIS anti-inflammatory possibilities!
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Levitra -- a PDE5 inhibitor, just like Cialis and Viagra, is very similar in action.
In the early forum years (2007-2008+), I was temporarily convinced that Levitra was my "cure" for POIS.
It was a hit or miss cure (sometimes before sex, sometimes after sex), complicated by my taking periodic injections of testosterone cypionate.
Maybe you can find something useful in the old posts:
https://www.google.com/search?q=levitra+pois+site://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari
Edit: for some reason Cialis was a disaster for me. Maybe because of its 12 hour action? (Others are much shorter term actors).
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1. In the early forum years , we were intrigued by the possible stimulation of NO (nitrous oxide) helping POIS.
Levitra, Viagra, and Cialis accomplish that.
In this document about pde5 inhibitors, perhaps there is an answer concerning the differences between levitra (vardenafil) and cialis (tadalafil). They say that vardenafil have more potency than the other. And I'm not sure, levitra have a better affinity for pde 2,3,4,7,8,10,11 than cialis . What can we do with this. It won't be me ! http://www.andrologyjournal.org/cgi/reprint/24/6_suppl/S52.pdf
2. Oxytocin (unrelated to above) was also a "big idea" we had in relation to ameliorating POIS.
https://www.google.com/search?q=oxytocin+pois+site:http://thenakedscientists.com&ie=UTF-8&oe=UTF-8&hl=en&client=safari
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In states where medical marijuana is legal, I have heard it praised for it's anti-inflammatory action.
here in washington state medical marijuana is already legal, but on tuesday a new marijuana law was passed in washington making marijauna legal for recreational use. It will be sold by the state to any individual 21 years and older. However, we will probably be sued or attacked by the federal government for this.
Laurac, if and when the suing and attacks die down, I'd like to see POIS researchers investigate medical marijuana for its POIS anti-inflammatory possibilities!
Maybe I can run that study here in Washington some day
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Laurac, yes!!! ;D
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For your information,
We have 446 members.
About 100 different members have posted in the last month.
For those of you who are shy... feel free, step on up, we'd love to hear your story and share more with you all.
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And...we all owe a huge debt of gratitude to Daveman for building this forum from the ground up!
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I don't know if this is the right place to post this, and I apologise for any screw-ups. I'm 22 years old, and I've experienced what I now know to be POIS for six years. I've been desperate, miserable and on-and-off suicidal and nowhere could I find any explanation for what was happening to me. Tonight I managed to stumble across the description for POIS, and I've searched through everything I can reach on it. I'm feeling extremely emotional right now, because I think I've finally gotten answers. So here I am; I hope I'll be posting more in the days and weeks to come. :)
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Welcome, Deranged Nasat. Please visit
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
for a comprehensive list of POIS resources.
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Our POIS Medical Research Funding Progress!
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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...The effects come on immediately after ejaculation (if I manage not to carry all the way through to orgasm but still become aroused I experience reduced symptoms). I have both physical and mental ailments - the physical being a general sense of burning pain or tingling throbbing over much of my body, the feeling that I'm hot and buzzing with electricity, as if a warm fog has entered my body and is now under my skin. I have stabbing pains in my knees and back, really stiff muscles and a sore throat that makes it difficult to speak clearly. My eyes burn and I become really, heavily fatigued. Mentally, the fog leaves me totally unable to think with any degree of clarity...
Hey, Deranged Nasat. My physical symptoms are similar to yours in that I also get knee and back pain and eye burning. I haven't really found anything to target the knee and back pain to a great extent yet, but I've been taking crushed fenugreek seed capsules for over a year now and they help a lot with the eye burning and fatigue if I drink tea with them. This combo helps somewhat for my knees and back and all my other symptoms as well. You can look at my treatment summary for more detailed info on all the things that have helped my POIS symptoms.
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doctor presribed intutiv(guafacine),It supposedly works on concentration and other cognitive problems. It is suppose to work pretty quickly so i will let you guys know how it works.
any body tried intutiv
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Most may remember "Squiqqy" in Laverne and Shirley's TV sitcom... he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.
http://www.youtube.com/watch?v=ubgURSn45jE&sns=em
He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH
We are ALMOST THERE!!!
ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!
Please give generously. To yourself! NOW!
Click here to PLEASE donate:
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Most may remember "Squiqqy" in Laverne and Shirley's TV sitcom... he has gone much of his life with a
complex disorder that makes living a pain! It's not POIS, but if you watch this video you'll see
that we have a lot in common.
http://www.youtube.com/watch?v=ubgURSn45jE&sns=em
He knows about us and offers us all of his wishes, that we push hard, as he has done in his life, to beat
this thing. Our solution and the solution for all the POIS sufferes of the world... even those who haven't
heard about our forum, is through RESEARCH
We are ALMOST THERE!!!
ONLY $9,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!
Please give generously. To yourself! NOW!
Click here to PLEASE donate:
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Demo,
What an inspiring and wonderful video! "Squiggy" -- aka David Landers -- is such a great role model for anyone struggling with a disabling condition. His going from keeping it a big, dark secret (which must have been exhausting!) to becoming a major spokesperson for the MS Society is truly praiseworthy, to say the least!
I hope the message he sent you, that "he knows about your forum and about the POIS struggle" and "offers all of his wishes that we push hard, as he has done in his life, to beat
this thing..." resonates with the forum members.
The world needs to know about this brutal condition -- it's still unknown in many scientific circles, and there are undoubtedly many men suffering in silence and isolation due to ignorance of this syndrome and support forum. Getting that one, solid research grant off and running is the only way to make this condition real in the world of scientists.
I've said this before -- the researchers are out there -- it's the funding that's lacking. That first fund must start with you men -- it's the nature of rare disease research.
$9,000 -- that's all you need to go forward -- by the end of March, 2013.
You guys can do it -- remember -- Ebay sales, perhaps another crowd-sourcing project, some outreach letters to companies that might kick in just a few thousand -- YOU CAN DO THIS!
Stef
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Thanks Stef! Its time to get inspired again friends. We have 3 months. But this year we're in a hugely better position than last year.
It's going to happen.
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THANKS, STEF!
THANKS, MELLIVORA!
:o ::)
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Brainfog, thanks for making your first post on the forum and describing your POIS history.
I'd like to remind all of our members to make a post describing your exact symptoms and treatments you've tried here http://poiscenter.com/forums/index.php?topic=81.0 in the Personal POIS Summaries and Histories thread. This way when you post about new treatments you try everyone will know whether your type of POIS is similar to theirs or not. Also it will be a great source of organized and concentrated treatment data. Keep it clear and easily readable if possible.
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Yep, I'm still about! Been away a bit as always but back again as always. Big up you people that are here 24/7 :) Thanks.
I'm feeling I might have another campaign in me after the festive period...
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I think we might need to appoint another mod to help deal with all this spam. Not to downplay the amazing job Daveman has been doing running this site for us.
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I know I've been away a while but....didn't realise I was considered spam here now ;)
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I think we might need to appoint another mod to help deal with all this spam. Not to downplay the amazing job Daveman has been doing running this site for us.
Thank God for the SPAM filter I have running. Since I've put it in service it has blocked over 38000 SPAM members!! Some still get through though. The filter is blocking over 250 per day now, which is a reflection of WEB visibility! So our visibiilty is getting better all the time.
I have erased about 4 SPAM posts a day.
There's a trick that can be applied which eliminates almost all SPAMMERS, but it means coding... and I just haven't had the time!
I'll see what we can do.
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I know I've been away a while but....didn't realise I was considered spam here now ;)
By no means at all, LOL.
And BTW, if you are up for a campaign, fantastic, we'll get a good team of 4 or 5 tegether and find a way to go this last little hall to our goal!!!
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Mel, have you seen our campaigning? (Email+posts)
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I have Demo, and what an amazing leap in our total funds as a result!! Good skills by everyone involved, huge thanks to everyone here and to the 'sponsor'. Every effort here benefits everyone whether they are on the forums or currently suffering alone and in silence and I remember how good it feels to be involved in that kind of movement knowing you've done a bit to help. So you and everyone who contributed to recent activities should feel immense! Lets all feel even more immense next year!
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Thank God for the SPAM filter I have running. Since I've put it in service it has blocked over 38000 SPAM members!!
Wow I didn't realize there were that many spam members trying to infiltrate. Unreal.
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I have Demo, and what an amazing leap in our total funds as a result!! Good skills by everyone involved, huge thanks to everyone here and to the 'sponsor'. Every effort here benefits everyone whether they are on the forums or currently suffering alone and in silence and I remember how good it feels to be involved in that kind of movement knowing you've done a bit to help. So you and everyone who contributed to recent activities should feel immense! Lets all feel even more immense next year!
We have until the third week of March, 2013 ****12 more weeks**** to beg, borrow, steal, campaign, sell on Ebay, write to a few companies, approach any donor you can think of -- to reach just under $9,000 more. This will get us to our goal of funding the first solid, scientific POIS research grant!!
LET'S START IN 2013 -- NOT 2014 -- DO IT NOW!!!
Yep -- it's the truth!
Share your ideas here!
OR just do it!
Our POIS Medical Research Funding Progress!
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
As Nancy Reagan would say: "Just Say No!" [to 2014!] (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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(http://calconews.com/wp-content/uploads/2012/12/new+year+animated+gif.gif)
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January 1st 2013, and the format of this forum is going to change.
There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.
It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.
We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.
We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.
This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.
This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.
NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.
If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.
We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.
As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.
Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.
We, none of us here are trained for it.
We will moderate this new approach strongly.
Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.
If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.
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Daveman, so just to be clear. It's still okay to talk about treatments that have relieved symptoms for us, correct?
Would it be okay for someone to describe why they think a treatment might have worked to relieve their symptoms?
I wish I could help with our research fund, but as I am now I can barely maintain my sleep cycle and I can't even work a cash register at a job.
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Sure, as you so often have done.
And sure, often it is useful to try to understand what might be working or why. Every little thing may be an eventual link or hint.
But I want to avoid false hopes and or making evaluations that could well have no ground. We can raise doubts and question,
there ARE researchers watching. It may provide clues as to what is going on.
But we just can't be using people as guinea pigs for all that the members may be willing.
We don't know the dangers we could be subjecting people to. And we, at least here want to maintain the focus on
real research. It would be a miracle if we could make it by March.... but alas...
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I see. Sounds reasonable to me.
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January 1st 2013, and the format of this forum is going to change.
There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.
It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.
We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.
We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.
This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.
This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.
NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.
If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.
We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.
As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.
Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.
We, none of us here are trained for it.
We will moderate this new approach strongly.
Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.
If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.
I wish to acknowledge my total agreement with the above.
THANK YOU, DAVEMAN!
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[Daveman's Forum Statement quoted directly below] sounds reasonable to me.
Thank you, Vincent M, for your support. You are a valued member.
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January 1st 2013, and the format of this forum is going to change.
There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.
It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.
We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.
We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.
This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.
This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.
NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.
If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.
We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.
As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.
Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.
We, none of us here are trained for it.
We will moderate this new approach strongly.
Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.
If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.
This merits re-posting in red.
It is a major POIS Forum Statement.
Please read it carefully.
Best wishes to everyone for a POIS-free future!!
-
Our POIS Medical Research Funding status:
We only need about $9,000 more.
This is eminently achievable!
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Well said
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We need the 9,000$ before this March, we cannot afford waiting another year! Everyone should do their best to donate - It does not matter how much, every contribution will make the difference - because this will mean that we are investing in our future, and the future of many people around the world who are suffering from POIS. And nothing is more valuable than our future and our health.
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Yes, I agree with Observer.
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I see. [The Forum Statement below] sounds reasonable to me.
Thank you, Vincent M, for your support. You are a valued member.
It's been an honor being part of this forum with you Demo, and with everyone else. Once this research study is done we will have much more recognition in the medical world which will be awesome for our cause.
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Well said
Thank you very much, amijgoro.
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I see. [The Forum Statement below] sounds reasonable to me.
Thank you, Vincent M, for your support. You are a valued member.
It's been an honor being part of this forum with you Demo, and with everyone else. Once this research study is done we will have much more recognition in the medical world which will be awesome for our cause.
:)
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We need the $9,000 before this March, we cannot afford to wait another year!
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Well said, Observer!
-
(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
January 1st 2013, and the format of this forum is going to change.
There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.
It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.
We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.
We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.
This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.
This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.
NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.
If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.
We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.
As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.
Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.
We, none of us here are trained for it.
We will moderate this new approach strongly.
Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.
If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.
Thank. God.
-
:)
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I once tried to get funding from the pharmaceutical firm who makes my TRT. Uphill climb (to do TRT - POIS clinical trials research)
But maybe now they could put up $9,000?
That's Corporate Peanut$!
Any thoughts?
-
Please visit our NORD Funding
Countdown Timer
http://www.timeanddate.com/countdown/generic?iso=20130322T00&p0=897&fg2=ff605a&msg=NORD+Grant+Funds+Due+For+2013&csz=1
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I'll give an other 200$ this month...We are really close...i'm sure we are gonna make it
I'll spread the word in french forums
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Thanks LAPOISSE
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Thanks, LAPOISSE! :)
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As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.
Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).
-
Please visit our NORD Funding
Countdown Timer
http://www.timeanddate.com/countdown/generic?iso=20130322T00&p0=897&fg2=ff605a&msg=NORD+Grant+Funds+Due+For+2013&csz=1
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Thanks, mellivora !
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Thanks, VAN, for donating another $200.
You have contributed $450 in total!
-
(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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We need the $9,000 before this March, we cannot afford to wait another year!
-
(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?
Select as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever! :)
(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Simply click above and scroll down till you see, "Make this a recurring donation"...
THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!
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Our POIS Medical Research Funding status:
We only need about $9,000 more.
This is eminently achievable!
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Thanks, VAN, for donating another $200.
You have contributed $450 in total!
-
As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.
Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).
-
I'll give an other 200$ this month...We are really close...i'm sure we are gonna make it
I'll spread the word in french forums
How are you exactly planning to do it, Lapoisse? Maybe some people here could copy your procedure in their own country forums, Thanks!
-
POIS Heroes Needed
People, we only need $9000 to start POIS Research.
If you could donate $100 during January, February and March you could be one of the heroes!
It only takes 30 of us to do this real.
If you want to become a POIS Hero-Forum Member post your name here, and we can start shaping a different future for all of us.
Do it for your family, do it for your girlfriend, do it for your friends, do it to change your life, do it for you, do it for the future!
A little effort today will become a greater reward in the years to come.
Thanks!
Mat
-
Many Thanks for your words Mat.
The hardest part about being a hero is making the first move. Once that's done, the rest is satisfaction and glory, and you find it wasn't really that hard at all.
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
POIS Heroes Needed
People, we only need $9000 to start POIS Research.
If you could donate $100 during January, February and March you could be one of the heroes!
It only takes 30 of us to do this real.
If you want to become a POIS Hero-Forum Member post your name here, and we can start shaping a different future for all of us.
Do it for your family, do it for your girlfriend, do it for your friends, do it to change your life, do it for you, do it for the future!
A little effort today will become a greater reward in the years to come.
Thanks!
Mat
THANKS, MAT!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Our POIS Medical Research Funding status:
We only need about $9,000 more.
This is eminently achievable!
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
-
Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
-
Hi everybody,
Don't let all the advertising dissuade you from posting your free-flowing thoughts.
The discussions on this thread can go anywhere and everywhere.
As *you* wish.
Best,
Demo
-
(http://stockfresh.com/files/i/iqoncept/m/64/1981620_stock-photo-help-us-reach-our-goal-speedometer-fundraiser-support.jpg)
$9,270.00 $9,350.00 $10,272.00
Over $25,000.00 raised!
THANKS, Van, Repeat DONOR!!
towards our $33,500 goal.
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS: (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
-
Let's Cure POIS. Now.
(http://markarmstrongillustration.files.wordpress.com/2011/10/feature_presentation.gif)
Make "POIS Cured!"
the Feature Presentation - not...
(http://vegasfamilyevents.com/wp-content/uploads/2012/04/The-Avengers-movie-review-2012.jpg)
Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
-
Let's Cure POIS. Now.
(http://whomurderedrobertwone.com/wp-content/uploads/2010/07/Feature-Presentation.png)
Let's make "THE DARK NIGHT (POIS) RISES (Cured)!"
the Feature Presentation - not..........
.......(http://upload.wikimedia.org/wikipedia/en/thumb/8/83/Dark_knight_rises_poster.jpg/220px-Dark_knight_rises_poster.jpg)
Skip the movie and click here to please donate instead. (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
-
We need the $9,000 before this March, we cannot afford to wait another year!
-
It is reasonable to assume that - statistically - one individual amongst us -- is able to write That Check -- for
$9,000 $6,700! By March 22!
We would all be extremely indebted. As we are to Our Previous Sponsor -- and all of you who gave and will continue to give -- BIG OR SMALL!! EVERY SINGLE DOLLAR COUNTS!!!!
T H A N K Y O U A L L!!! :):):):)
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
I've just donated $100 to NORD. I hope more POIS Heroes join me.
This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort we can change our lives.
How much would you pay to be POIS free forever???
I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life I want.
Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!
Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!
You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!
$5, $10, $20, $50, every dollar counts!!!
As Demo said in a previous post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?
Join the POIS Heroes movement by donating today!
Thanks,
Mat
-
WAY TO GO MAT!
It doesn't feel like it is going to be easy. But once it's done, it's surprising how easy it was.... and WHAT a feeling!
You become one of the ones who ACTUALLY DID SOMETHING!
-
I've just donated $100.
Mat
Thank you, Mat, for your REPEAT DONATION!!!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
I have updated the latest total. We are sneaking up there... $25,535 up $800 from the latest October push.
There has been at least $800 donated since the October promotion, which is fantastic, however to make the March deadline
we need one last strong push from as many as we can get.
Think how we will feel once we get the last bit together. Our dream will begin to materialize.
-
Thanks for the update, Daveman :)
-
We need the $9,000 $6,700 before this March 22. We cannot afford to wait another year!
-
I've just donated $100 to NORD. I hope more POIS Heroes join me.
This is not the first time I donate, but I hope this is almost the last time... if we all make a little effort we can change our lives.
How much would you pay to be POIS free forever???
I don't live in the USA or in Europe, but I still donate as much as I can.
I can avoid having POIS by abstaining from sex... but that's not the life I want.
Do it for your family, do it for your girlfriend, do it for the future, do it for you!!!
Come on people! Don't wait to your neighbor to donate (he doesn't have POIS), you are the only one that can change your future!!!
You've already donated a lot? Well... it's time to donate a little more. We are almost there!!!
$5, $10, $20, $50, every dollar counts!!!
As Demo said in a previous post, maybe there is one guy among us that can donate all the money we need... but I can't wait for a miracle to happen... and you?
Join the POIS Heroes movement by donating today!
Thanks,
Mat
-
OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POIS Team!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
-
Our POIS Medical Research Funding status:
We only need $6,700 more.
This is eminently achievable!
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
I have updated the latest total. We are sneaking up there... $25,535 up $800 from the latest October push.
There has been at least $800 donated since the October promotion, which is fantastic, however to make the March deadline
we need one last strong push from as many as we can get.
Think how we will feel once we get the last bit together. Our dream will begin to materialize.
Great news, Daveman!
This _IS_ the winning team! :)
-
(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
(http://www.prlog.org/10510105-stis-dave-skinnerl-presents-matt-pickhardt-of-uspsa-with-check-for-9000.jpg)
"HEY! WAIT! MAKE THAT CHECK OUT TO 'NORD-POIS FUND' INSTEAD!!"
-
We need the $9,000 before this March, we cannot afford to wait another year!
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
-
Who's gonna match me if i donate 100? or perhaps raise?
-
Wow, Amij!
-
Thanks, PBO, for $250 donation today!!
-
Several of us - including me - have donated $X,XXX.
All we need are a few more!
Many thanks to all of you again for rising to the last call!
-
Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
This means - on average - that we must raise about $100 per day to meet the March 22 deadline for inclusion of POIS research commencing with NORD in 2013.
And amazingly, we have just raised $200 and $250! Thanks again, fellow POISers!
-
Hi everyone!
It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!
PBO.
-
THANK YOU PBO!!!!!!!!! :)
-
Hi everyone!
It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!
PBO.
-
(http://www.chachingonashoestring.com/wp-content/uploads/2012/05/five-dollar-bill21.jpg)
Q. DOES $5 REALLY MATTER?
A. YES!!!!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
$5 fits real nice! C'mon! Feel the power! :) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
-
Hi everyone!
It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!
PBO.
Thank you very much PBO!
Together we can do it!
-
If $50 to $100 or more seems like too much money to give for now, how about committing $5, $10, $20 or more per MONTH?
Select as few or as many months as you want! 2 months, 3 months, 4 months, 6 months, 12 months, whatever! :)
(http://www.mitcheljonmusic.com/uploads/make_recurring_donation.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Simply click above and scroll down till you see, "Make this a recurring donation"...
THANK YOU, EVERYONE - YOUR AUTOMATIC MONTHLY DONATIONS WILL HASTEN OUR GOALS CONSIDERABLY!
-
Hi everyone!
It was me who has donated 250$ today.
This is my first donation to the POIS grant. I will try to donate a bit more money before march.
If we all get together we can make it!!The POIS fund will succeed before the deadline!
Come on guys, we need serious medical research!!
PBO.
Thank you very much PBO!
Together we can do it!
Thank you, Mat!
-
As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.
Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).
-
Our POIS Medical Research Funding Progress!
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
(http://www.marshu.com/articles/images-website/articles/presidents-on-us-paper-money/ten-10-dollar-bill.jpg)
Q. DOES $10 REALLY MATTER?
A. YES!!!!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
$10 fits real nice! C'mon! Feel the power! :) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Individual efforts are (variably) valuable for alleviating [POIS] symptoms but I have no doubt a more methodical research is invariably better if the goal is to identify/confirm the causes and develop "truer" cures.
I'm sure all of us have financial obligations, most of which seem more important than this research fund. It's not my place to ask you to re-evaluate those obligations, but I highly recommend that you perhaps commit to a recurring, automatic donation of small payments, an option NORD offers. Otherwise, I suggest you set up a recurring reminder in your calendars or smartphones (weekly, monthly, bi-monthly, etc.) to manually make a small donation.
-
Who's gonna match me if i donate 100? or perhaps raise?
What did you decide? :)
-
We need the $6,700 before this March 22.
We cannot afford to wait another year!
-
Who's gonna match me if i donate 100? or perhaps raise?
What did you decide? :)
I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.
Amijgoro, yours is the first in this promo.
-
There are those over there at NSF, that think this is all a fun game! I suppose we need some short of humor or diversion to help us make it through day by day, but it's another thing when the pursuit of real solution becomes a game.
Are we anal, perhaps a little. Are we fun? Sorry! We could play and dance all night, promise false or un corroborated hopes so that you think we are cool! Sorry!
Others MIGHT find a temporary solution for some of you. I hope so, and all the best to those who try.
Our vision is to find a positive and proven solution that the world of POISers outside these forums can use, simply by going to their
Doctors.
So far nothing works for everybody, and most new treatments are unstable...work for awhile on some, then loss effectivity.Face it WE DON'T KNOW WHAT THIS IS.
We want to know what this is! We'll find the treatment from there. It's not fun my friends. It's serious.
I don't know about you, but I'm tired of going around in circles..for almost 7 yrs now...
-
I donated 100 dollars moments ago. That has been the best life investment i have ever made. All i want is to live my life to the fullest, like i was meant to.
(this isn't my last donation. i hope everyone will do the same)
-
I donated 100 dollars moments ago. That has been the best life investment i have ever made. All i want is to live my life to the fullest, like i was meant to.
(this isn't my last donation. i hope everyone will do the same)
Amijgoro,
I cannot do other than agree with you! Thank you very much!
Come on guys, we need everyone?s collaboration!!
PBO
-
Who's gonna match me if i donate 100? or perhaps raise?
What did you decide? :)
I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.
Amijgoro, yours is the first in this promo.
WOW, DAVEMAN!!
-
There are those over there at NSF, that think this is all a fun game! I suppose we need some sort of humor or diversion to help us make it through day by day, but it's another thing when the pursuit of a real solution becomes a game.
Are we anal, perhaps a little. Are we fun? Sorry! We could play and dance all night, promise false or un corroborated hopes so that you think we are cool! Sorry!
Others MIGHT find a temporary solution for some of you. I hope so, and all the best to those who try.
Our vision is to find a positive and proven solution that the world of POISers outside these forums can use, simply by going to their
Doctors.
So far nothing works for everybody, and most new treatments are unstable...work for awhile on some, then loss effectivity.Face it WE DON'T KNOW WHAT THIS IS.
We want to know what this is! We'll find the treatment from there. It's not fun my friends. It's serious.
I don't know about you, but I'm tired of going around in circles..for almost 7 yrs now...
SOMEONE IS BRAVE ENOUGH TO TELL IT LIKE IT IS! Thank you, Daveman!
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
-
Thanks, Amijgoro, for the $100 donation today!!
-
We need $100 a day - on average - to make the March 22 deadline!
And we're on track!!!
-
OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Thanks amijgoro, added to the "Daveman Promo" calculations as well.
-
I donated 100 dollars moments ago. That has been the best life investment i have ever made. All i want is to live my life to the fullest, like i was meant to.
(this isn't my last donation. i hope everyone will do the same)
Amijgoro,
I cannot do other than agree with you! Thank you very much!
Come on guys, we need everyone?s collaboration!!
PBO
It's difficult to know how good it feels until you've actually done it!
-
(http://i858.photobucket.com/albums/ab143/demografx/9A561D95-89B8-4193-86BB-BAFC6F0A033E-116-0000000253F4232B.jpg)
Q. DOES $20 REALLY MATTER?
A. YES!!!!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
$20 fits real nice! C'mon! Feel the power! :)
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Thanks amijgoro, added to the "Daveman Promo" calculations as well.
See Daveman's post at top of this page.
-
Great PBO, amigjoro and Daveman, I hope to join you before the end of this month! I encourage everyone who is reading my words to step in with a "small"*-donation! Also I would try to get more donations from people who are not taking part on this forum(but they are suffering from POIS also!)
*Nothing is small when we're talking about POIS, because this money could have cost you a lot of your effort, and everyone of us recognizes that!
-
Great PBO, amigjoro and Daveman, I hope to join you before the end of this month! I encourage everyone who is reading my words to step in with a "small"*-donation! Also I would try to get more donations from people who are not taking part on this forum(and suffering from POIS also!)
*Nothing is small when we're talking about POIS, because this money could have cost you a lot of your effort, and everyone of us recognizes that!
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Our POIS Medical Research Funding Progress!
December 18, 2012:
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
January 10, 2013:
(http://i858.photobucket.com/albums/ab143/demografx/28D07DC4-48A8-4EDC-8E0B-14003B463659-334-000001804379E935.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg) (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Daveman Promo
I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.
-
We need the $9,000 $6,700 before this March 22.
We cannot afford to wait another year!
-
It is reasonable to assume that - statistically - one individual amongst us -- is able to write That Check -- for
$9,000 $6,700! By March 22!
We would all be extremely indebted. As we are to Our Previous Sponsor -- and all of you who gave and will continue to give -- BIG OR SMALL!! EVERY SINGLE DOLLAR COUNTS!!!!
T H A N K Y O U A L L!!! :):):):)
-
Daveman, Thank you very much!!!
Very nice Promo!!! :o
Thanks Amijgoro!
-
OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
We only need.......$6,700 more!!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
-
Our POIS Medical Research Funding Progress!
December 18, 2012:
(http://i858.photobucket.com/albums/ab143/demografx/F305ABB8-75EE-4351-8304-22FD09F3F914-212-00000012C1D4C70A.jpg)
January 10, 2013:
(http://i858.photobucket.com/albums/ab143/demografx/28D07DC4-48A8-4EDC-8E0B-14003B463659-334-000001804379E935.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
WE'RE SOOOOO CLOSE. LET'S MAKE OUR DREAM HAPPEN NOW!
(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
69 days to go!
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Hi everyone,
Don't let all the advertising dissuade you from posting your free-flowing thoughts.
The discussions on this thread can go anywhere and everywhere, respecting, of course, Dave's recent posted guidelines.
As *you* wish.
Best,
Demo & Daveman
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Well, I have got the word from one virtual friend that has POIS(but who is also having a great success with niacin since I told him to use it). He is going to donate some amount in February for our/HIS research grant. I haven't even meet him in person, but he is willing to donate after I told him about the initiative(He did not read this forum, only has written few times a long time ago on the NSF- he's "disconnected" from us). My advice would be to ask for help to some of your best friends/relatives so they can donate some small amount before this march deadline. Ask for help to anyone - if you have enough confidence with that special person and you have told him/her your problem, he/she would have no problem to donate some amount, that's for sure -!
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Wonderful example you set for us all, Observer!
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We need $6,700 before this March 22.
We cannot afford to wait another year!
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Well, I have got the word from one virtual friend that has POIS(but who is also having a great success with niacin since I told him to use it). He is going to donate some amount in February for our/HIS research grant. I haven't even meet him in person, but he is willing to donate after I told him about the initiative(He did not read this forum, only has written few times a long time ago on the NSF- he's "disconnected" from us). My advice would be to ask for help to some of your best friends/relatives so they can donate some small amount before this march deadline. Ask for help to anyone - if you have enough confidence with that special person and you have told him/her your problem, he/she would have no problem to donate some amount, that's for sure -!
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
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(http://i1190.photobucket.com/albums/z454/MotiveWeight/Make-your-dreams-a-reality-2.gif)
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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Daveman Promo
I'll duplicate all donations that come in from now until the end of Jan. (limit $1000) not including present recurring donations.
The idea is to get new donors in. They should be announced here for the Daveman Promo.
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We need the $6,700 before this March 22.
We cannot afford to wait another year!
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OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
We only need.......$6,700 more!!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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(http://gifsandgifs.com/wp-content/uploads/2012/06/TahitiUnderwater1.gif)
Let's make this our First Annual POIS Getaway Retreat.
After we nail the Grant. :)
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Demo, put me down for $ 400!
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Wow, Rocky! $400!! THANK YOU!!
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After receiving Rocky's $400 and Daveman's promo $400, we can change Observer's post once again!... :)
We need $5,900 before this March 22.
We cannot afford to wait another year!
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
66 days to go!
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daveman you said you were willing go up to a thousand right,
i will donate another 600 to before the deadline.
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daveman you said you were willing go up to a thousand right,
i will donate another 600 to before the deadline.
WOW, I guess I'm going to have to do it!! ;)
Thanks CertainlyPOIS! Really!
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Wow, CertainlyPOIS! $600!! THANK YOU!!
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After receiving Rocky's $400, CertainlyPOIS' $600 and Daveman's promo $1,000, we can change Observer's post once again!... :)
We need $4,700 before this March 22.
We cannot afford to wait another year!
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OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
We only need.......$4,700 more!!
On average, that's only $71 per day between now and March 22!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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(http://i858.photobucket.com/albums/ab143/demografx/CA5B1830-98B9-4D4F-94BA-50A50CAA611A-161-00000008FE935BE9.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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For your information,
We have 446 members.
About 100 different members have posted in the last month.
For those of you who are shy... feel free, step on up, we'd love to hear your story and share more with you all.
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Rock27 and CertainlyPOIS, absolutely amazing!!!
What you've done is a giant leap for all the POIS sufferers!!!
Thank you very much!!!
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:) :) :) :)
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We have reached 86% of our Research Grant Funding :)
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Rock27 and CertainlyPOIS, absolutely amazing!!!
What you've done is a giant leap for all the POIS sufferers!!!
Thank you very much!!!
And Daveman matches Rock27 and CertainlyPOIS $ for $ = $2,000!!!!!
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
65 days to go!
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I've been looking at diabetes, because as a result of recent checkups, I have pre-diabetes.
Generally resolvable if caught in time.
But it’s interesting when you think of how diabetes was probably diagnosed, after research, everything is clear, and everybody knows exactly what to do. You read forums, and there are all the tips and suggestions, all about exercise, taking medicines, or insulin, all clear and doable, but there isn’t a cure.
But before research, it wouldn’t have been at all that clear. For years you go without knowing you have it, and when it starts to affect you, you are well into the process, and in some cases damage done. Based on what you feel, you would have tried this and that… if you look diabetes up, there are even catecholamine implications, adrenaline, noradrenaline, dopamine, that kind of stuff. So I’m sure at first, before research people would have tried to attack this system or that system, with remedies usually used for those systems, but those systems are put out of kilter because of another reason, so those other solutions wouldn’t have worked, other than to make you feel better for a while.
Then research found out exactly WHY the systems were out of kilter. Now the whole process of diabetes makes a lot more sense. And many can live normal lives as a result.
Based on how I feel when I have high blood suger, I probably would have tried other things… I still don’t have to take medicines, but with the knowledge of what it is, it is really easy to make improvements on my life and how I feel.
I don’t know why we insist on losing valuable time to make this move for POIS. Imagine knowing what it is and exactly what causes it. If we ONLY do that, it will be a BIG, BIG jump. We will do much more.
Think about it, it’s even worth taking out a loan. No problem taking out a loan for a car. Take one out for health.
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Hi everyone, I just registered although I have been reading for a few weeks on this forum. Count me in for another 500$...
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Wow, marquis! $500!! THANK YOU!!
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marquis, I hope you have an opportunity to visit our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
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Think about it, it’s even worth taking out a loan [to donate to our Research Fund]. No problem taking out a loan for a car.
Take one out for health.
I did.
For $1,250 (charge card payout...same as a loan)
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I've been looking at diabetes, because as a result of recent checkups, I have pre-diabetes.
Generally resolvable if caught in time.
But it’s interesting when you think of how diabetes was probably diagnosed, after research, everything is clear, and everybody knows exactly what to do. You read forums, and there are all the tips and suggestions, all about exercise, taking medicines, or insulin, all clear and doable, but there isn’t a cure.
But before research, it wouldn’t have been at all that clear. For years you go without knowing you have it, and when it starts to affect you, you are well into the process, and in some cases damage done. Based on what you feel, you would have tried this and that… if you look diabetes up, there are even catecholamine implications, adrenaline, noradrenaline, dopamine, that kind of stuff. So I’m sure at first, before research people would have tried to attack this system or that system, with remedies usually used for those systems, but those systems are put out of kilter because of another reason, so those other solutions wouldn’t have worked, other than to make you feel better for a while.
Then research found out exactly WHY the systems were out of kilter. Now the whole process of diabetes makes a lot more sense. And many can live normal lives as a result.
Based on how I feel when I have high blood suger, I probably would have tried other things… I still don’t have to take medicines, but with the knowledge of what it is, it is really easy to make improvements on my life and how I feel.
I don’t know why we insist on losing valuable time to make this move for POIS. Imagine knowing what it is and exactly what causes it. If we ONLY do that, it will be a BIG, BIG jump. We will do much more.
Think about it, it’s even worth taking out a loan. No problem taking out a loan for a car. Take one out for health.
I am also pre-diabetic.
Excellent analogy to what we're going through to get REAL research done, and to *finally* (I've been at this circular forum thing since Feb. '07 - my head is spinning with 6 loooooong years of posted...zzzzz......so-called "theories"!) see The Real Thing -- and to.......................... STOP OUR HOMEGROWN/FOREVER-SPECULATING (vs. scientifically researched medical theory) IDEAS ON WHAT POIS IS OR POIS ISN'T! Sorry for shouting, but I do get emotional.
Thank you, Daveman, and Thank You to Our True Supporters, financially and otherwise.
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OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
We only need.......$4,700 more!!
On average, that's only $71 per day between now and March 22!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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As per Daveman's recent post, I totally agree that before the end of March deadline the majority of discussion and effort here should be channelled toward getting the NORD grant. If you have time to spend thinking and posting about POIS in the next couple of months, please spend it thinking about fundraising for the grant. If you have an idea, please act on it. Sometimes there is a danger of discussing things too much rather than just carrying out our ideas. Its better to carry out 5 ideas, 4 of which end up failing than to just discuss things and not do any of them. One common characteristic of successful entrepreneurs is that they are not afraid to fail, thus they act on ideas more often than others and ultimately some of them work! And the first step is to just write that email or whatever it is you've been thinking about doing. Just take the first step and the rest follows. Who knows where it might lead. Every breakthrough success we've had here be it the October money bomb or the reddit campaign, getting POIS sufferers on TV (amazing!) and in newspapers, getting more doctors interested in POIS, having POIS officially recognised by the major US and European databases ....all of these have come from a small first step taken by individual forum members here.
Its a new year of opportunity - put aside your excuses (we all have them), be positive, act on your ideas and get your new year off to a flyer. You'll feel great that you did something for everyone (and don't forget that everyone includes you so you really can't lose).
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Let's PLEASE put POIS *medical* theories/conjecture on hold till we get our Grant funded.
Our aim is to get The Medical Experts - not amateurs like us - to diagnose us and come up with treatments - for ALL POISers.
Many thanks. I feel very proud and fortunate to be part of your POIS History and Maturation.
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(http://i858.photobucket.com/albums/ab143/demografx/CA5B1830-98B9-4D4F-94BA-50A50CAA611A-161-00000008FE935BE9.jpg)
86% but we still need YOUR HELP.
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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For your information,
We have nearly 500 members.
About 100 different members have posted in the last month.
For those of you who are shy... feel free, step on up, we'd love to hear your story and share more with you all.
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(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
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We need the $4,000+ before this March 22.
We cannot afford to wait another year!
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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It's January 2013, and the format of this forum is going to change.
There is a growing group dedicated to home remedies and theories which heavily undermine donation progress for TRUE Research.
It seems there are two good options for discussing these home remedies, which historically have lead to very little true progress, either producing
relief for only a few or producing waves of hope in a new and promising direction, that eventually fail, because the cure is not aimed at the cause
but at the relief of symptoms.
We all want relief of symptoms, and many herbal and OTC compounds have proven to be helpful to varying degrees to some, but the intense focus in
finding a remedy based on symptomology such does NOT get to the mechanism that stops POIS forever, nor is consistent for all.
We do not want to sell false hope nor lead users down dead end streets especially at the risk of furthering the damage to their systems just to
increase our member base.
This forum is not a playland. We would like our members to have a place to share their suffering and potential remedies, but not at the expense
of deviating from the main intent of desperately seeking real professional research and resolving the POIS puzzle.
This requires HIGHLY EXPERIENCED MEDICAL RESEARCHERS. It is NOT possible for untrained inexperienced individuals to resolve this
very complicated issue. Attempts at this are irresponsible and dangerous. Real research requires specific specialized and heavily experienced professionals
with decades of experience.
NSF and "Feellalike.com" are open and willing to risk amateur medical research. There are few controls and restrictions, the activity is even encouraged.
If you are willing to take the risks and lose valuable time and have your hopes dashed time and again, these may be ideal locations for you to experiment.
We bowed to the pressure, for a time, trying to maintain a collective in the hopes that we could finally achieve the professional research necessary, but
the risks are too high, so we have made the choice to focus in professional research.
As it is, with such heavy redirection of hope in unsupported theories, we will probably not make the March deadline, and will require at least another year
to raise the rest of the funds. So we feel that a slight interruption at this point in our change of focus will have little negative impact.
Our focus will move primarily to research funding efforts, companionship, sharing of potential useful symptomatic remedies, but there will be NO MORE
DISCUSSION of supposed theories for POIS cures.
We, none of us here are trained for it.
We will moderate this new approach strongly.
Feel free to visit sites who permit uncontrolled research and are willing to flagrantly promote false hopes. And good luck.
If we remain with just three members who are dedicated and intent on rolling up their sleeves to go this last mile, we need nothing more.
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(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
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We need $4,000+ before this March 22.
We cannot afford to wait another year!
-
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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We need $4,000+ before this March 22.
We cannot afford to wait another year!
So close, any ideas welcome. Promos, whatever. 2 months flies by.
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Perhaps as a refresh, you could take a tour of these threads about donating. Procedures, mechanism, structure etc. etc. Questions and answers.
http://poiscenter.com/forums/index.php?board=22.0
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Thanks, Daveman!
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We need $4,000+ before this March 22.
We cannot afford to wait another year!
So close, any ideas welcome. Promos, whatever. 2 months flies by.
Maybe someone or a group or institution could put up the $4,000 as a loan we pay back?
Like this:
(http://blogs.trb.com/community/news/boca_raton_forum/haven.jpg)
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OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
We only need.......about $4,000 more!!
On average, that's only $71 per day between now and March 22!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
62 days to go!
As Daveman says, 2 months can FLY by. Let's capture the moment!
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(http://i858.photobucket.com/albums/ab143/demografx/123B7954-E086-4226-A8AE-D0E3C6ED87E4-896-000000AD65B627A6.jpg)
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Thanks for today's confidential Donation$!
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Thanks for today's confidential Donation$!
Hello, Everyone,
I just feel compelled to say that I AM AMAZED!!!!
The amount of money you've raised -- especially considering the anonymity factor -- is absolutely astonishing!
What a terrific and inspiring group of men you are -- I say that from the bottom of my heart.
You men are going to do it!!!
(And you are keeping NORD's Accounting Department on its toes. Without question -- you are the most active research fund there.)
Here's to conquering this misererable demon! POIS has found its antidote in all of you who have kept the faith and refused to give in to those thoughts that we all have in many situations -- those doubts, those worries, the "why bother?" thoughts.
And your moderators -- with their nerves of steel -- are absolute blessings. :-) They've not been afraid to face possible failure (which will not happen!) or to cope with doubting forum members. They have both stood in their light -- all the way through.
What a fantastic group you all make! BE PROUD!
Stef
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"Thank you" seems so inadequate, Stef!
You are The Rip Roaring Best in my book!
Demo
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What is more important than curing your POIS??????
(http://sholomfoundation.com/org_files/718/images/AnimatedDonateNow.gif)
Click here to CURE POIS:
PLEASE
Fund Our Only Hope...GIVE Now! (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
(http://www.wagingpeace.org/images/support/donation_image_main.jpg)
Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
Its important to note that, even if someone finds an effective treatment tomorrow, there would still be more research to be done. There's not much danger of the research fund going to waste even if someone has a sudden breakthrough. We'd still need to know why the treatment works. (eg. niacin helps some sufferers but we don't know why). We don't know the underlying cause of POIS and I suspect it could be slightly different, in different groups of people (eg something different could be going on in those who have muscle aches and sweats to those who don't). We don't know how prevalent POIS is. There are so many questions to answer beyond finding an effective treatment/cure (although that of course is what we need as soon as possible). This is the tip of the iceberg. Its an opportunity to pave the way not only for our own future health but for everyone who suffers POIS in future. And to raise the profile of POIS to reach those who haven't found our forums yet and to inform their doctors so they recognise the symptoms. As Porke said recently, we are pioneers. No one's going to do it for us, at least not with any urgency. So we have to push this on ourselves.
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(http://i858.photobucket.com/albums/ab143/demografx/8eccedd4.jpg)
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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(http://i858.photobucket.com/albums/ab143/demografx/CA5B1830-98B9-4D4F-94BA-50A50CAA611A-161-00000008FE935BE9.jpg)
86% but we still need YOUR HELP.
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Hi everyone,
Don't let all the advertising dissuade you from posting your free-flowing thoughts.
The discussions on this thread can go anywhere and everywhere, respecting, of course, Dave's recent posted guidelines.
As *you* wish.
Best,
Demo & Daveman
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OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
We only need.......about $4,500 more!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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We only need approx. $4,500 before this March 22.
We cannot afford to wait another year!
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(http://static.tumblr.com/qwvefk8/WmZm5c6th/dreams_really_do_come_true.png)
Thank you for the combined $750 in Donation$ today!
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(http://www.fcasv.org/sites/default/files/birdlogo_large.jpg)
Cure POIS!
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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For those of you who have noticed different numbers posted above: we have decided to remain with actual - rather than pledged/actual - donations.
We're doing great! Let's keep the momentum!
Demo
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
59 days to go!
As Daveman says, 2 months can FLY by. Let's capture the moment!
-
(http://i858.photobucket.com/albums/ab143/demografx/ee14a939.jpg)
Or click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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If anyone wants to tell the group what led to your donating, that may help motivate others more than my constant whining
: - )
Thanks for asking, Demo!
My motivation is very simple.
I want relief from this monster called POIS!!
If we cannot support ourselves in an attempt to find a treatment (or outright cure) for this malady with a world renown research facility like NORD, then it is a very sad day indeed.
Please... Everyone here! Donate for your own good!! NOW!!!
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Just gave an other 150$ ; We are gonna make it!
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Just gave an other 150$ ; We are gonna make it!
Thanks LaPoisse,
We're soooo close. daily donations, here and there, big and small will all contribute to this last $3000.
We're doing so well, and everyone is chipping in.
Let's make it this year, and get started with the real show!!
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Thank you, LAPOISSE for your repeat $150 in Donation$ today!
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(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Let's make it this year, and get started with the real show!!
Yes!!!
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It's a real pleasure working with you all!
You are all dedicated and willing to make this MAJOR event...happen!
We needed a major rally for March...and you rallied around our Cure-POIS flag!
Thank you!!
Demo
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OUR "FINAL HOME $TRETCH!"
(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
Let'$ go, POI$ Team!
We're almo$t there!
Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
As Daveman says, 2 months can FLY by. 57 days to go!
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This amounts to $65 per day!
If someone pays $150 that's 2.3 days worth. $500 is a little over a weeks worth.
Help us make it. It would REALLY be a shame to go another year when we are so close.
Imagine, having to wait another year for being short just $1000 (or even $3000)..... Ufff!
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Is there anyways to have the sponsor back? Or any other? Or launch a campain? or a mail to members of this forum that maybe not come anymore but would be glad to help us reach the goal as we are really close now ?
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Is there anyways to have the sponsor back? Or any other? Or launch a campain? or a mail to members of this forum that maybe not come anymore but would be glad to help us reach the goal as we are really close now ?
Well the last sponsor was just one of us, and really had to stretch to help out as he did.
Again many many thanks to him.
Perhaps there are others who are thinking about putting bigger amounts, like $500 or $1000 who could offer to match others up to their limit, sort of like I did.
See if we can get others to help us equal our commitment.
We will put together a couple of mail-outs. That's a good idea. Another campaign like Indiego-go takes too much time I think.
The time left is really so little.
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Cure POIS!
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I am in the army where i make 150 dollars a month. I have just donated 100 of those dollars to our research.
I know that even if im feeling great all of a sudden and decide to go out with friends and have a good time for a change its all for not because in a day or two and its in the back of my mind, no matter how much im trying to forget about pois its always going to come back to me. Im so damn sick of feeling that way! I WANT TO LIVE MY LIFE! that is why 2 thirds of my salary is a very small price to pay for a lifetime of happiness.
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Thank you, amijgoro, for your $100 in Donation$ today!
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I am in the army where i make 150 dollars a month. I have just donated 100 of those dollars to our research.
I know that even if im feeling great all of a sudden and decide to go out with friends and have a good time for a change its all for not because in a day or two and its in the back of my mind, no matter how much im trying to forget about pois its always going to come back to me. Im so damn sick of feeling that way! I WANT TO LIVE MY LIFE! that is why 2 thirds of my salary is a very small price to pay for a lifetime of happiness.
Thank you for your INSPIRATION ! !
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To all contributors thus far: thank you for your patience!
And thank you again for your role in helping to finally make POIS medically understood.
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To all pledgers.
This is the time for your pledge to really pay off.
Please consider making your pledge real. Now.
Thank you.
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We cannot afford to wait another year!
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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Thanks for today's confidential Donation$!
Hello, Everyone,
I just feel compelled to say that I AM AMAZED!!!!
The amount of money you've raised -- especially considering the anonymity factor -- is absolutely astonishing!
What a terrific and inspiring group of men you are -- I say that from the bottom of my heart.
You men are going to do it!!!
(And you are keeping NORD's Accounting Department on its toes. Without question -- you are the most active research fund there.)
Here's to conquering this misererable demon! POIS has found its antidote in all of you who have kept the faith and refused to give in to those thoughts that we all have in many situations -- those doubts, those worries, the "why bother?" thoughts.
And your moderators -- with their nerves of steel -- are absolute blessings. :-) They've not been afraid to face possible failure (which will not happen!) or to cope with doubting forum members. They have both stood in their light -- all the way through.
What a fantastic group you all make! BE PROUD!
Stef
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Thank you for your confidential $25 Donation$ today!
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Cure POI$!
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
As Daveman says, 2 months can FLY by.
60 52 51 days to go!
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"We cannot afford to wait another year!" -- writes 'Observer', our POIS Video/TV Star!
See TV Videos with Forum Members Observer, Hoping, and Animus:
http://www.youtube.com/user/POISchannel
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Hi everyone,
[Written about a year ago, but still valid - demo]
I'll be away for the rest of this month with little/no internet access - back in March. Unfortunately, as I've said, this means I won't be able to take on the reddit fundraiser, writing more letters to companies and other things on my to-do list, at least not until I get back.
Lately, I've had a lot of motivation to tackle POIS I haven't always had this. Sometimes in the past I've been guilty of just wanting to get on with my life and enjoy things when I haven't had POIS symptoms. When I have been in POIS, well the motivation hasn't always been there either - that's a symptom of POIS!
There are people on this forum doing a lot of work to further our fight against POIS including several who have put in much more work than me over the years. I wondered a while back if it might be helpful to someone if I posted a message about why I've been so motivated lately. I started drafting a message...
Motivation comes and goes. Right now, I'm seriously motivated to do something about POIS. I haven't always been. I joined this forum in 2007 but I've had long periods of silence along the way. I understand how its possible to not visit the forum for months or read it without posting much. I thought it might help to give some insights as to why I'm so fired up right now.
1. Dating
2. Being nearly 40
3. A chance to achieve
4. We're getting really close
1. I've been trying to get a relationship off the ground. I signed up to an internet dating site a while ago. Let me tell you there are some fantastic ladies out there. I've been on several dates and met one person in particular recently I liked a lot. POIS has held me back when it comes to trying to take things beyond friendship. If, like me you've been avoiding seeking a relationship for a long time because of POIS, I can tell you that going on some dates has given me serious motivation to sort POIS out. Why? Because it properly reminds me and makes me realise what I've been missing out on - for years and years. I'm still unsure whether its fair on the women for me to be on a dating site as a POIS sufferer but of course if I end up getting close to someone on there I'll explain things to them. Actually, a doctor I saw encouraged me to go ahead and start dating again and I was reassured that some people on here manage relationships despite POIS. Some are even married! When my POIS was at its worst, I would agree a relationship was out of the question. I'm at a stage when I'm still unsure but I can see its getting more and more possible.
2. I'm getting pretty close to 40 years old. I'd like to settle and have a family. It feels like I'm light-years away from that. The clock is ticking and I feel I'm running out of time. If its too much longer, its likely I'll be left trying to start a relationship with a woman who can't have kids anymore. And I'll be a pretty old dad if I manage it. If you're a lot younger it can be hard to get motivated by this. I know, I was there. Don't be fooled, time wastes quickly when you're in POIS.
3. I grew up used to achieving, in my case academically. 15 years ago POIS turned my life upside-down in ways that you all know it can. 15 years!!! And Demo's had POIS for 30+. In my professional life I haven't achieved what I planned to. I've underachieved since I've had POIS (although I tell myself that I've done pretty remarkably given I have it). Through these forums I've realised that I have a chance to achieve something great. A chance to to beat POIS, make a difference and improve not only my life but the lives of all POIS sufferers present and future. I want to be able to look back and feel I made an effort and helped a little in the fight against POIS. For a long while I don't think I did make much effort. I wouldn't wish POIS on anyone. It feels good to have a sense of purpose and to try to help.
4. We are closer now than we have ever been to solving POIS and that too is motivating. POIS is more widely known and accepted than it has ever been. In 2007 it was amazing to find the forum and there were some great discussions but things felt a lot more helpless than they do now. We were scrabbling around in the dark. Now we have much clearer directions to go in. At some point I'm certain we're actually going to figure this out. I've been going on about the NORD fund lately. I want to meet that March 31st [2011] deadline. Maybe Prof Waldinger will announce he's solved everything. But I think its unlikely what he finds will work for all of us given the varying success different remedies have had across our group We've got a chance to start research on POIS. With it and the few people that are already looking into POIS, we'll have a much better chance of solving POIS for everyone.
I don't know what your life is like but, based on experience I think I can safely say it would be transformed if you didn't have POIS. I'm sorry if some of this sounds patronising, that's not my intention. You may be skeptical about the NORD fund. You may be right to be. But can you afford to take that risk? Please don't waste time. Fight through this. The time to do something is now.
There's never been a better time because we finally have doctors that are sitting up and taking notice. As I said, I've had POIS for 15 years and some have had it much longer than that. I feel like a huge chunk of that time, especially the early years of POIS was wasted/taken away from me. I don't want you to reach this stage. For most of the time Demo and others had POIS, the condition didn't even have a name, wasn't recognised by the medical community and there were no fellow sufferers around to turn to. Please don't waste your life or sit back hoping someone else will do something about it and solve your problems for you because the days of POIS being unknown have passed.
Its easy to feel helpless but you're not. Here are some things you can do:
CCconfucius drafted a letter to send to companies. I did too. They're not perfect but they're a good start. Write to companies for outside funding.
Make sure your doctor knows about POIS. He likely won't be able to help but you'll be raising awareness and paving the way to make things easier for other people in future.
At least think about other ways of fundraising and suggest them on the forum
At the risk of being repetitive and losing the message through being long-winded…
Please take a serious look at how much you can donate to the NORD fund. In terms of the potential gains, I'm going to be bold and say that very very little is as important to you right now as resolving your POIS issues. I know especially when you are young, money can be very difficult to come by and to part with. I am not wealthy - not even remotely so. I've had my fair share of financial struggles, not least because of POIS. But trust me, money goes and money comes. If you part with some, you'll have more soon and you'll get by. In a year's time, money you give away now will likely not even register because you'll have found a way to make up for it. You might even be well on your way to being POIS-free. If you solve your POIS you'll earn more, that I am sure of. POIS-free! - don't pass an opportunity to make that real.
As I said, some of these are bold statements. I hope you have read this far because its important for me to acknowledge that I know pretty much nothing about any of you so forgive me if you feel I'm making sweeping statements I'm not qualified to make. But I do know what its like to have POIS for a long time and I know we've never had better opportunities or resources to do something about it. Help yourselves and your loved ones and don't end up looking back wishing you'd done something earlier.
Then a few weeks later Mel wrote...
I just converted my initial $500 pledge into a donation to the NORD fund.
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Hi Men,
You've got about three more weeks to make your fund goal in 2012.
It's time to turn your pledges into REAL DONATIONS -- there is no comparison between a pledge and a donation. Donations win out. And the ripple effect is guaranteed!
Show your trust, and especially -- show your support for those who have been donating.
WHAT ARE YOU WAITING FOR??
This is how it is for ALL rare disorders -- the research begins with you. You are no different from any other group of people who struggle with a rare disorder in that one specific respect.
Honor yourselves and each other -- and just go for it!
From Stef/nordnurse a year ago.
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This is Daveman's recent mailer that we hope you all received:
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"Most of you know but some may not! We have raised $30,000 of the minimum $33.500
required to produce a research grant for the investigation of POIS. WE are almost there!!
But so is the dead-line for this year.
We have until March 22, 2013 to reach the minimum! Just 8 weeks left to raise the last $3000.
If we don't make it by March 22nd?
Not a BIG catastrophe, only have to wait one more year. We don't lose the money, just the
opportunity in time.
One more year of wondering, guessing, going round in circles with promising theories...
that in 6 years, have NEVER done more than raise unfounded hope.
What will the research provide?
We can't really know for sure, but the BEST will be chosen. Invitations will be sent out to over
40 medical specialists, many more will apply independently.
NORD (National Organization for Rare Disorders), the grant administrators, have a highly experienced
and specialized team to evaluate the dozens and dozens of proposals. NORD has evaluated hundreds
of very rare disorders, many much more complex than ours, and have a mechanism which has had very
much success in filtering through strange and unknown disorders to islated the options that have the
best chance of resolving the issue.
If an illness has great complexities, more than ours, the direction may be directed toward closing
in on defining the illness and preparing for future stages of research. Where certain mechanisms have
shown to produce results as in POIS, thia can certainly help to more closely isolate a direction.
We don't want to proclaim any particular direction, just indicate the optioins that we are aware of.
Will we find the cure with this research?
Ultimately YES. Perhaps with just one grant, perhaps not. But we can be sure we will know
WHAT POIS IS after this first research. Just that alone is worth it's weight in gold. We don't
know what POIS is maybe it's this, maybe it's that, try this, try that, this works for some the
other works for others some things SEEM to work... for a week.
We don't know what POIS is. We just don't know. To know that, we will have put ourselves on the
right track, we will have made a change in the tail chasing. We will be standing at the doorway to a solution.
But I believe that THIS is at the very least. We will likely uncover a very likely direction to relief for all,
we will credibly expose POIS to the medical profession... VERY IMPORTANT allowing a positive attitude by treating
doctors.
We are ALMOST THERE!!!
ONLY $3,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!
Please give generously. To yourself! NOW! "
(http://i858.photobucket.com/albums/ab143/demografx/445AD757-BE0F-4158-B8A1-3B1405D17976-559-000000B8133C2B24.jpg)
Click here to PLEASE donate:
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Please Click H E R E (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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This is Daveman's recent mailer that we hope you all received:
--------------------------------------------------------------------------------------------------------------
"Most of you know but some may not! We have raised $30,000 of the minimum $33.500
required to produce a research grant for the investigation of POIS. WE are almost there!!
But so is the dead-line for this year.
We have until March 22, 2013 to reach the minimum! Just 8 weeks left to raise the last $3000.
If we don't make it by March 22nd?
Not a BIG catastrophe, only have to wait one more year. We don't lose the money, just the
opportunity in time.
One more year of wondering, guessing, going round in circles with promising theories...
that in 6 years, have NEVER done more than raise unfounded hope.
What will the research provide?
We can't really know for sure, but the BEST will be chosen. Invitations will be sent out to over
40 medical specialists, many more will apply independently.
NORD (National Organization for Rare Disorders), the grant administrators, have a highly experienced
and specialized team to evaluate the dozens and dozens of proposals. NORD has evaluated hundereds
of very rare disorders, many much more complex than ours, and have a mechanism which has had very
much success in filteing through strange and unknown disorders to islated the options that have the
best chance of resolving the issue.
If an illness has great complexities, more than ours, the direction may be directed toward closing
in on defining the illness and preparing for future stages of research. Where certain mechanisms have
shown to produce results as in POIS, thia can certainly help to more closely isolate a direction.
We don't want to proclaim any particular direction, just indicate the optioins that we are aware of.
Will we find the cure with this research?
Ultimately YES. Perhaps with just one grant, perhaps not. But we can be sure we will know
WHAT POIS IS after this first research. Just that alone is worth it's weight in gold. We don't
know what POIS is maybe it's this, maybe it's that, try this, try that, this works for some the
other works for others some things SEEM to work... for a week.
We don't know what POIS is. We just don't know. To know that, we will have put ourselves on the
right track, we will have made a change in the tail chasing. We will be standing at the doorway to a solution.
But I believe that THIS is at the very least. We will likely uncover a very likely direction to relief for all,
we will credibly expose POIS to the medical profession... VERY IMPORTANT allowing a positive attitude by treating
doctors.
We are ALMOST THERE!!!
ONLY $3,000 more to go and POIS will *finally* begin SERIOUS MEDICAL RESEARCH towards our cure!
Please give generously. To yourself! NOW! "
(http://i858.photobucket.com/albums/ab143/demografx/445AD757-BE0F-4158-B8A1-3B1405D17976-559-000000B8133C2B24.jpg)
Click here to PLEASE donate:
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
MANY Thanks, Daveman! Our first Grant will also ATTRACT: more research, more funding, more attention from YOUR doctor -- because POIS will have been studied by world renowned medical professionals and researchers obtained with NORD's help and its impeccable credentials.
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
As Daveman says, 2 months can FLY by.
60 52 51 49 days to go!
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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If you cannot afford to donate, please don't feel bad: your PARTICIPATION here is very important. Whether you post or not, your presence, your readership, your "statistic" is...most meaningful!
Thank you all for just being here :) :) :)
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Please click H E R E now to donate to The POIS Medical Research Fund (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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If you cannot afford to donate, please don't feel bad: your PARTICIPATION here is very important. Whether you post or not, your presence, your readership, your "statistic" is...most meaningful!
Thank you all for just being here :) :) :)
For more than 30 long years, I had NO forum (even an inferior one :)) to turn to!
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After all these forum years, it is still rewarding to me when a newcomer writes: "I am so glad I found this place. NO ONE else understands POIS." :)
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I just donated. Let's get this done people!!
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Thank you, Hoping!!! -- demo and Daveman
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Thank you for your confidential $10.00 in Donation$ today!
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Let's Cure POIS. Now.
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Make "POIS Cured!"
the Feature Presentation - not...
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Or click here to read more about The POIS Medical Fund (http://poiscenter.com/forums/index.php?topic=125.0)
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I just donated. Let's get this done people!!
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Hi All,
I asked a question the other day that's gone unanswered, and is un-related to donating -- perhaps I posted it in the wrong place.
So, here's the question --
What is the purpose of fenugreek for treating POIS symptoms? (I'm not challenging -- only curious!)
What does it do for some of you -- and, if you know, what seems to be the mechanism?
I know that not all of you have found fenugreek helpful, but for those of you who have been helped by it -- please advise.
My only "medical" experience with fenugreek was with breast-feeding moms who came into the primary care office where I worked. If their milk supply seemed low, or the baby wasn't "interested," fenugreek was recommended for the mom because it literally makes the breast milk sweeter. The babies love it -- their feeding would immediately pick up, which in turn, would increase milk production in the mom.
And the moms all smelled like maple syrup from the fenugreek!! I'd know immediately if a particular breast-feeding mom was taking fenugreek because of that smell (which was pleasant).
So -- I'm interested in what it does for POIS.
Thank you! :-)
Stef
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Hi All,
I asked a question the other day that's gone unanswered, and is un-related to donating -- perhaps I posted it in the wrong place.
So, here's the question --
What is the purpose of fenugreek for treating POIS symptoms? (I'm not challenging -- only curious!)
What does it do for some of you -- and, if you know, what seems to be the mechanism?
I know that not all of you have found fenugreek helpful, but for those of you who have been helped by it -- please advise.
My only "medical" experience with fenugreek was with breast-feeding moms who came into the primary care office where I worked. If their milk supply seemed low, or the baby wasn't "interested," fenugreek was recommended for the mom because it literally makes the breast milk sweeter. The babies love it -- their feeding would immediately pick up, which in turn, would increase milk production in the mom.
And the moms all smelled like maple syrup from the fenugreek!! I'd know immediately if a particular breast-feeding mom was taking fenugreek because of that smell (which was pleasant).
So -- I'm interested in what it does for POIS.
Thank you! :-)
Stef
Fenugreek worked on me certainly well. It helped to reduce my cognitive symptoms, but it also reduced the "pleasure feeling" of Orgasm - It was a very weak orgasm in that sense. Hope this helps!
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Hi All,
I asked a question the other day that's gone unanswered, and is un-related to donating -- perhaps I posted it in the wrong place.
So, here's the question --
What is the purpose of fenugreek for treating POIS symptoms? (I'm not challenging -- only curious!)
Yes sorry I should've told you I answered it in a thread we've made for fenugreek here http://poiscenter.com/forums/index.php?topic=27.msg8576#msg8576
But the gist of my answer is that we don't know exactly how it works. I suspect it works directly on inflammation for me in a way that aspirin hasn't been able to, but it also seems to have some hormonal effect. There have been studies on its ability to help diabetes as well by lowering glucose levels and perhaps it could help us that way.
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Some historical posts (since 2007) about fenugreek and POIS:
http://tinyurl.com/b435956
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Thank you all for the information. Fenugreek is so interesting!
After reading your replies, then looking at the older posts from the NSF forum that Demo supplied in that link, I did a PubMed search.
There's A LOT about breast feeding, which doesn't seem to have anything to do with POIS that i'm aware of!! But there have also many studies on the blood sugar-lowering effects of fenugreek, making it a potential treatment for type 2 diabetes -- but not necessarily having anything obvious to do with POIS either.
(I do wonder what the reason is for the weaker orgasms that Observer mentioned.)
Maybe most importantly as related to POIS, there are indications that it inhibits the production of certain inflammatory cytokines. Here's a link to an abstract of a 2012 article by a group of pharmacologists from the School of Pharmacy and Pharmaceutical Sciences, Kanazawa University, in Japan -- http://www.ncbi.nlm.nih.gov/pubmed/20979021.
(As an aside, we do need inflammatory cytokines -- they do serve a purpose. It's when they go into overdrive that they become a problem.)
The US is so far behind other countries in the study and understanding of herbs -- probably because these aren't considered "drugs" and therefore, not financially worthwhile for study. There's no Big PHARMA funding for herbs in the US.
Vincent M -- it sounds like you got it right about the anti-inflammatory effect.
Some cautions about fenugreek (what would you expect from a nurse?!) If you're allergic to chick peas, don't take fenugreek! (They are similar in chemistry.) And -- it can increase clotting time in some (meaning, it can interfere with the blood clotting process, possibly leading to bleeding episodes -- but this is very rare).
This is seriously interesting -- it gives yet another perspective on POIS -- and will help in locating even more researchers for the grant THAT YOU ARE GOING TO MAKE HAPPEN BEFORE THE END OF MARCH. :-)
Stef
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There's A LOT about breast feeding, which doesn't seem to have anything to do with POIS that i'm aware of!! But there have also many studies on the blood sugar-lowering effects of fenugreek, making it a potential treatment for type 2 diabetes -- but not necessarily having anything obvious to do with POIS either.
(I do wonder what the reason is for the weaker orgasms that Observer mentioned.)
I also experienced some of these weaker orgasms when I first started fenugreek(I even had a dry orgasm that was about 10% the pleasure and duration of a normal orgasm for me). The shorter the "o" was the less POIS symptoms I had. The way I see it this points to some hormonal effect.
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This is seriously interesting -- it gives yet another perspective on POIS -- and will help in locating even more researchers for the grant THAT YOU ARE GOING TO MAKE HAPPEN BEFORE THE END OF MARCH. :-)
Stef
:) :) :)
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Two times now I have tried something and it seems to be effective, both times the same thing happened.
As you all know, niacin helps me a lot, but I still get joint and muscle swelling and soreness especially in the first days of POIS.
Like today. Last night was day "0". I think I waited a little long from the peak of the flush (about 1.5 hrs), and so POIS came through
a little more than usual. I slept poorly, and in the morning my back ached and muscles and joints were sore.
So I took a B Complex tablet nothing special, not a particularly high dose, just your garden variety B-Complex, and 1000mg Vitamin-C
In about 2 hrs my muscle and joint soreness went away. And I've been pretty good since then (12 hrs later).
My first day (like today) usually has a very light tinge of POIS in the background, but usually so little that mosst of the time I forget that I am in POIS.
So rather than take B-Complex before daily, I take one on day 1 and maybe another on day 2.
Sometimes I will take a B-Complex (just one per day) 3 days and 3 days before I plan to have sex. This somehow makes me "hornier" during the act
2 days later and gives me more stamina. However the strange thing is, if I take B-Complex every day for a week before sex, I have good stamina, but
my POIS is much worse, despite taking niacin.
So it's a balance. B-Complex 2 and three days before, niacin one hour before and B-Complex the day after, and perhaps the second day after.
For me a great combination, and has me all but POIS free.
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We have struggled with this illness quite some time now and achieved a lot with the help of our amazing members.
The nord research is a big result of our combined effort in the battle against Pois.
Lets continue the fight to free ourselves and live up to our full potential.
I am volunteering to be this months sponsor. Every donation that comes in will be matched. Lets reach the 33,500 and get this research started!
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(http://www.gifs.net/Animation11/Holidays/Party/Confetti_canon.gif)
I am volunteering to be this month's sponsor.
Every donation that comes in will be matched. Lets reach the $33,500 and get this research started!
Thank you, amijgoro, for your great words about funding.
And your February, 2013 Sponsorship!
WE ALL THANK YOU, AMIJGORO!!! :) :) :)
(http://3.bp.blogspot.com/_cIEJkD82e60/TJybLey_mTI/AAAAAAAAD5A/FWvImYRHNJw/s1600/falling+confetti.jpg)(http://3.bp.blogspot.com/_cIEJkD82e60/TJybLey_mTI/AAAAAAAAD5A/FWvImYRHNJw/s1600/falling+confetti.jpg)
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(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)
Please Click H E R E and our February Sponsor (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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(http://www.fcasv.org/sites/default/files/birdlogo_large.jpg)
Cure POI$!
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Thank you all for the information. Fenugreek is so interesting!
After reading your replies, then looking at the older posts from the NSF forum that Demo supplied in that link, I did a PubMed search.
There's A LOT about breast feeding, which doesn't seem to have anything to do with POIS that i'm aware of!! But there have also many studies on the blood sugar-lowering effects of fenugreek, making it a potential treatment for type 2 diabetes -- but not necessarily having anything obvious to do with POIS either.
(I do wonder what the reason is for the weaker orgasms that Observer mentioned.)
Maybe most importantly as related to POIS, there are indications that it inhibits the production of certain inflammatory cytokines. Here's a link to an abstract of a 2012 article by a group of pharmacologists from the School of Pharmacy and Pharmaceutical Sciences, Kanazawa University, in Japan -- http://www.ncbi.nlm.nih.gov/pubmed/20979021.
(As an aside, we do need inflammatory cytokines -- they do serve a purpose. It's when they go into overdrive that they become a problem.)
The US is so far behind other countries in the study and understanding of herbs -- probably because these aren't considered "drugs" and therefore, not financially worthwhile for study. There's no Big PHARMA funding for herbs in the US.
Vincent M -- it sounds like you got it right about the anti-inflammatory effect.
Some cautions about fenugreek (what would you expect from a nurse?!) If you're allergic to chick peas, don't take fenugreek! (They are similar in chemistry.) And -- it can increase clotting time in some (meaning, it can interfere with the blood clotting process, possibly leading to bleeding episodes -- but this is very rare).
This is seriously interesting -- it gives yet another perspective on POIS -- and will help in locating even more researchers for the grant THAT YOU ARE GOING TO MAKE HAPPEN BEFORE THE END OF MARCH. :-)
Stef
I was pleasantly surprised that my local pharmacy's computer can measure the interaction effects between fenugreek and other prescription drugs. Maybe everyone else's pharmacy can do that as well, if there is interest in experimenting.
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
As Daveman says, 2 months can FLY by.
60 52 51 49 46 days to go!
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Two times now I have tried something and it seems to be effective, both times the same thing happened.
As you all know, niacin helps me a lot, but I still get joint and muscle swelling and soreness especially in the first days of POIS.
Like today. Last night was day "0". I think I waited a little long from the peak of the flush (about 1.5 hrs), and so POIS came through
a little more than usual. I slept poorly, and in the morning my back ached and muscles and joints were sore.
So I took a B Complex tablet nothing special, not a particularly high dose, just your garden variety B-Complex, and 1000mg Vitamin-C
In about 2 hrs my muscle and joint soreness went away. And I've been pretty good since then (12 hrs later).
My first day (like today) usually has a very light tinge of POIS in the background, but usually so little that mosst of the time I forget that I am in POIS.
So rather than take B-Complex before daily, I take one on day 1 and maybe another on day 2.
Sometimes I will take a B-Complex (just one per day) 3 days and 3 days before I plan to have sex. This somehow makes me "hornier" during the act
2 days later and gives me more stamina. However the strange thing is, if I take B-Complex every day for a week before sex, I have good stamina, but
my POIS is much worse, despite taking niacin.
So it's a balance. B-Complex 2 and three days before, niacin one hour before and B-Complex the day after, and perhaps the second day after.
For me a great combination, and has me all but POIS free.
Your success is an inspiration. Even though your POIS treatment and mine are different, and don't work for everyone, there is comfort in seeing a physiological treatment that proves "something biological" is going on with us and...it's NOT "all in our heads"...as too many doctors wrongly believe.
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I've just donated $100.
Amijgoro, you are AWESOME! Thank you very much for your sponsorship!!!
People, let's do it!!! Together we can!!!
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Mat, Thank You for your $100 in Donation$ today!
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(http://www.vboosturnetprofits.com/images/ClickHereButton-animated.gif)(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)(http://www.armeniafund.org/assets/telethon/telethon_2012/donate-animated.gif) We Are Soooooooo Close!
Please Click H E R E and our February $ponsor (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
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i just donated the 600 hundred to match that daveman will match.
CertainlyPOIS, Thank You for your $600 in Donation$!
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I'm 100% sure we can make it for this year ; we can't afford to wait another year, we are very close ; there is 533 members in here ; it's 10$ each and then we have a real chance to understand how POIS work and how he could be treated to offer all of us a better life ; What is more important ?
If i'm sure we do it this year i'm OK to give (and I promise i'll do it) an other 300$
What you guys can put for the last shot ? even 5$ it's OK....i'm sure we can virtualy gather the 4500$ (actually it's 4200$ now)
Lets make a list :
LAPOISSE : 300$
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We cannot afford to wait another year!
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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(http://blogs.discovermagazine.com/loom/files/2009/01/muybridge_race_horse_animated.gif)
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
As Daveman says, 2 months can FLY by.
60 52 51 49 46 44 days to go!
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Great!
What is the "february sponsor" thing?
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Great!
What is the "february sponsor" thing?
I am volunteering to be this month's sponsor.
Every donation that comes in will be matched. Lets reach the $33,500 and get this research started!
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Hi,
I wanted to let the sponsor (amijgoro) know I just donated 250$ to NORD.
Thank you very much Amijgoro for your February sponsorship.
PBO
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PBO, Thank You for your $250 in Donation$!
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amijgoro, Thank You for your PBO sponsorship, magically turning PBO's $ now into $500 in Donation$!
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(http://www.fcasv.org/sites/default/files/birdlogo_large.jpg)
Cure POI$
Now!
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Let's lock in 2013 - now - let's finish our funding, and be assured that POIS will begin a true, scientific, medical investigation in 2013.
Not 2014.
Not 2015.
Now!
We deserve it!
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(http://i858.photobucket.com/albums/ab143/demografx/27E17B51-34FA-4BF1-BE35-56F46526BA65-835-000000E80ED45DB2.jpg)
YOU (we :) )GUYS ARE GREAT!
*************** 92% OF GOAL! ***************
(1) We broke the $30,000 barrier!
(2) We broke the 90% barrier!
*************************************************
With our February sponsor, amijgoro - who will match every $$$ you give!! -- it's our opportunity to go over.
WE CAN MAKE IT FOR 2013!!!!!!!
:) :) :)
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I wanted to let the February sponsor (Amijgoro) know I just donated 50$ to NORD.
Thank you very much Amijgoro for your February sponsorship!
First I donated 450$. But 500$ in total is a more round figure. :)
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Thank you, Repeat Donor Vandemolen!! $50 = $100 !!!
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What does "DONATE FUNDS" mean? Why should I donate? What is it all about???
Please Click H E R E (http://poiscenter.com/forums/index.php?topic=125.0http://www.poiscenter.com/forums/index.php)
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Hi folks,
Its been my intention for a while to do another crowd-sourced funding campaign. I intended to do this through the site http://www.medstartr.com which seems ideal for it.
However, this has been on my to-do list for some time now and I'm finding I just don't seem to have the energy to do it right now, sorry. I did begin to put something together but even though tackling POIS should be my biggest priority and trump everything else on my to do list, I'm struggling to put time into it amongst other personal things at the moment. If someone else wants to launch a campaign through medstartr please do and I'll happily try to collaborate as best I can.
The best I feel can manage for now is another $500 donation which has just gone in.
Dear NORD, soon its time to show us what you've got ;)
Great effort by everyone on here lately. This is definitely our year. Demo, Daveman and Stef are legends and I've incredible respect and gratitude for the many other positive and pro-active people here. Whether you feel your contribution is big or small, whether it has been monetary, informative or just encouraging, you've made a difference. Thanks :)
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Repeat Donor and Beloved Forum Activist, mellivora, Thank You for your $500 ($1,000 with $ponsor, amijgoro!) in Donation$ today!
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(http://i858.photobucket.com/albums/ab143/demografx/5E69FFA6-6A4B-4AB3-AD2C-544EDF84D5B8-375-000000785FB65202.jpg)
YOU (we :) )GUYS ARE GREAT!
******** 95% OF GOAL! ********
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(http://www.vboosturnetprofits.com/images/ClickHereButton-animated.gif)(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)(http://www.armeniafund.org/assets/telethon/telethon_2012/donate-animated.gif) We Are Soooooooo Close!
Please Click H E R E and our Very Generous February $ponsor, amijgoro, (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
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I wanted to let the February sponsor (Amijgoro) know I just donated 50$ to NORD.
Thank you very much Amijgoro for your February sponsorship!
First I donated 450$. But 500$ in total is a more round figure. :)
Hi Vandemolen!
I just love your comment, "First I donated 450$. But 500$ in total is a more round figure."
It is such an endearing and really sweet way of advising that you just donated $50! :-)
Stef
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From nordnurse ... very interesting article about Cholera...do you see the similarity to POIS and our battle to refrain from "speculative theories" and "finding NORD science instead" that we see here vs. elsewhere?
Thank you, Stef!!
"Cholera Confusion, circa 1832 (headline)
As cholera first tore through Europe in the mid-19th century, people tried anything to prevent the deadly disease. Then science stepped in."
By Dan Cossins | February 1, 2013
http://www.the-scientist.com//?articles.view/articleNo/34113/title/Cholera-Confusion--circa-1832/
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(http://1.bp.blogspot.com/_AZEkuhOKJs0/TP0NrJDyDoI/AAAAAAAAAIs/ZMp7A7_X2-w/s1600/make+your+dreams+come+true.jpg)
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Please visit our NORD Funding
Countdown Timer
http://tinyurl.com/bkzdoch
As Daveman says, 2 months can FLY by.
60 52 51 49 46 44 41 days to go!
-
(http://www.poiscenter.com/newsletters/NL-6.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/e3dfc479.jpg)
Please Click H E R E
(http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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Anonymous, Thank You for your $22.90 in Donation$ today!
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Well, that was not really an "anonymous donation". I know who is behind it, and he is no other than an hungarian "virtual friend" of mine(he also suffers from POIS, but he is getting excellent results with niacin). I contacted him via social-network, and I asked him to donate for our NORD fund. If someone of you don't have enough money/ funds, then you could choose this way to contribute. Ask for some of your friends/relatives to donate a small amount for our POIS research grant, we are very close, and multiple small-donations will make us achieve our goal!
Also, I would like to thank amigjoro for his amazing push and initiative!
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Well, that was not really an "anonymous donation". I know who is behind it, and he is no other than an hungarian "virtual friend" of mine(he also suffers from POIS, but he is getting excellent results with niacin). I contacted him via social-network, and I asked him to donate for our NORD fund. If someone of you don't have enough money/ funds, then you could choose this way to contribute. Ask for some of your friends/relatives to donate a small amount for our POIS research grant, we are very close, and multiple small-donations will make us achieve our goal!
Also, I would like to thank amigjoro for his amazing push and initiative!
Thank you, Observer!
Excellent idea: let's continue to reach out to friends, social networks, family, and...institutions/organizations.
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Thank you, Anonymous Donor!! $250 = $500 !!! thx to $ponsor, amijgoro!
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(http://i858.photobucket.com/albums/ab143/demografx/F332F003-4ADE-4803-9E55-BCFDCCD77778-900-0000006C29817B2A.jpg)
Includes pledges and sponsorship :)
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98% of POIS Research Funding Goal achieved!
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Our deadine: 40 more days to finish funding. Then we will finally be part of NORD's 2013 Research Program. Thank you everyone, we are all committed to taking this next major leap to hopefully wipe the scourge POIS _off_ the medical map!
Best to all,
Demo
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We are so close you can smell it!!
I think we only need like $650 more this month which would be duplicated by this month's sponsor.
Very little!!
Come on everybody, one last push!
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How amazing is it going to be to read here that we've made the total? A M A Z I N G ! How good will you feel knowing you played a part in getting us to the total? :)
Come on folks. We all deserve it! I'd like to read that we've made it this week and I can't believe you don't want to read that too.
Even a small donation helps, especially as we are so close and we are lucky enough to have an amazing sponsor to double whatever you donate. Giving has been scientifically proven to make people happier (that's actually true!) and the best bit is you're effectively giving to yourself too so you can't lose!
We all want to know what POIS is. It might be a bit different in different people. A scientific study is the best way to find out and we're very close to launching one. For you, for us and for every future POIS sufferer. We are making history. What we do now paves the way for future POIS victims not to have to suffer like we have. I know I wouldn't wish POIS on anyone. Be part of getting a POIS research programme underway. There's no better time than now to donate. You'll feel happy knowing you did what you could and played a part :)
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We are so close you can smell it!!
I think we only need like $650 more this month which would be duplicated by this month's sponsor.
Very little!!
Come on everybody, one last push!
$650.....
I'm in for another $50. Just done it. Who's going to join me? If 12 more people put in $50 we're there. If 6 people put in $100 we're there.
Will you miss $50 you spend now in a year's time? How about in two year's time? Might you be on your way to knowing what POIS is and be POIS-free in two year's time? If we make that total you might :) If you spend $10 less per week on food or fuel or a night out and do this for just one month. That pays for your donation.
Ok enough of the hard sell from me. I'm done now. I know that I don't like pushy sales people in shops. Whatever you feel you can give, even if its $10 in total, that's great. I'm just a fellow pois sufferer trying to sort my life out for me and everyone I love. I'd like you to be POIS-free and I'd like future people who find themselves with POIS to not have to go through what I've been through. Not bad value for $650.
Just so its handy, here's the link to the donations page. Just click and select "Post Orgasmic Illness Syndrome (POIS)" from the drop-down menu where it says 'Please select a research fund'.
https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3 (https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
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I just donated another 70$ to the NORD research fund, so 530$... Come on everyone, I expect a rain of micro-donations from all people who suffer from POIS and have been with our group sharing their accounts... It's now or never, don't wait for anyone to take the first step; Take you that step!!
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Thank you, Observer!! $70 = $140 !!! thanks to our $ponsor, amijgoro!
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Thank you, mellivora!! $50 = $100 !!! thanks to our $ponsor, amijgoro!
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I just donated another 70$ to the NORD research fund, so 530$... Come on everyone, I expect a rain of micro-donations from all people who suffer from POIS and have been with our group sharing their accounts... It's now or never, don't wait for anyone to take the first step; Take you that step!!
I hope everyone is listening!
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We are so close you can smell it!!
I think we only need like $650 more this month which would be duplicated by this month's sponsor.
Very little!!
Come on everybody, one last push!
$650.....
I'm in for another $50. Just done it. Who's going to join me? If 12 more people put in $50 we're there. If 6 people put in $100 we're there.
Will you miss $50 you spend now in a year's time? How about in two year's time? Might you be on your way to knowing what POIS is and be POIS-free in two year's time? If we make that total you might :) If you spend $10 less per week on food or fuel or a night out and do this for just one month. That pays for your donation.
Ok enough of the hard sell from me. I'm done now. I know that I don't like pushy sales people in shops. Whatever you feel you can give, even if its $10 in total, that's great. I'm just a fellow pois sufferer trying to sort my life out for me and everyone I love. I'd like you to be POIS-free and I'd like future people who find themselves with POIS to not have to go through what I've been through. Not bad value for $650.
Just so its handy, here's the link to the donations page. Just click and select "Post Orgasmic Illness Syndrome (POIS)" from the drop-down menu where it says 'Please select a research fund'.
https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3 (https://www.rarediseases.org/about/support/research-donations/fg_base_view_p3)
Mellivora, thank you for being a longterm loyal friend.
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We are so close you can smell it!!
I think we only need like $650 more this month which would be duplicated by this month's sponsor.
Very little!!
Come on everybody, one last push!
Daveman: thank you forever for creating a Forum With Freedom to advance the Medical Science of POIS!
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(http://www.vboosturnetprofits.com/images/ClickHereButton-animated.gif)(http://www.horizonsplymouth.org/assets/images/Donate_animation.gif)(http://www.armeniafund.org/assets/telethon/telethon_2012/donate-animated.gif) We Are Soooooooo Close!
Please Click H E R E and our Very Generous February $ponsor, amijgoro, (http://www.rarediseases.org/about/support/research-donations/fg_base_view_p3) will match your donation!
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Thank you, Anonymous Donor #1 today!! Your $70 = $140 now!!! thanks to our $ponsor, amijgoro!
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Thank you, Anonymous Donor #2 today!! Your $50 = $100 now!!! thanks to our $ponsor, amijgoro!
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I can account for at least one of those anonymous donors - a pretty amazing friend of mine donated today. I shall pass on your thanks 8)
Veeery clooose now! I'd still love to get there this week.
Come on peeps less celibate, more celebrate! Just a bit more. You could be the one who sends us over the finish line ;)
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I just donated another $150 to the fund, let's make this happen.
Yesterday I ejaculated and thankfully having only 60 - 70% cognitive symptoms (social anxiety, dizziness, brainfog) because I had a good flush before with niacin.
I always have some dark circles and quiet baggy eyes, but in POIS it becomes unbearable and I could easily play a character in Night Of The Living Dead.
At work today a lot of people where asking if I'm ill or didn't sleep for the last three days.
I really hope that we achieve the goal and that the issue mentioned above gets covered as well in the research...
Best wishes to all of you from Germany,
marquis
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So what is the count ?
If we are not to far, i'll maybe close the thing
Congrats to all of us
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Thank you, marquis!! Your $150 = $300 now!!! thanks to our $ponsor, amijgoro!
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So what is the count ?
If we are not to far, i'll maybe close the thing
Congrats to all of us
Teriffic, LAPOISSE! I counted you in that "temperature chart" that I made. We're counting the REAL (not pledged $$$) and will let you know immediately! :) :) :)
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I can account for at least one of those anonymous donors - a pretty amazing friend of mine donated today. I shall pass on your thanks 8)
Thanks for doing that, Mel!
Veeery clooose now! I'd still love to get there this week.
We might!!
Come on peeps less celibate, more celebrate! Just a bit more. You could be the one who sends us over the finish line ;)
Haha!
LESS CELIBATE
MORE CELEBRATE
That could be our Forum Theme! ;D
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Well folks... I´m not as good at the graphics and fanfare as Demo, and I'm afraid we may have to wait a day or two, he's "unlocking" his computer right now. One of those mentally ill hackers that only want to do bad in this world.
BUT, IT SEEMS WE HAVE NOT ONLY MADE THE GOAL, BUT GONE OVER!!
We are waiting for a solid pledge and the finals of the last sponsorship to all go through, but these are pretty sure numbers.
And it looks like our Grand Total, everything in is $35373.90
Can you believe it?
We will be starting the process THIS YEAR!!
Congratulations every one. You all pulled together this last little while and all have brought it through.
I hope you can all feel proud for what we have done, and now, our hopes are pointed at another level all together
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(http://gifsoup.com/webroot/animatedgifs/754962_o.gif)
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(http://jennykellerford.files.wordpress.com/2010/11/congratulation_graphics_2.gif)
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(http://www.politisite.com/wp-content/uploads/2012/12/FireworksAnimated.gif)
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THANK YOU DAVEMAN
THANK YOU STEFANIE
IT WOULDN'T HAVE HAPPENED WITHOUT YOU
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Well folks... I´m not as good at the graphics and fanfare as Demo, and I'm afraid we may have to wait a day or two, he's "unlocking" his computer right now. One of those mentally ill hackers that only want to do bad in this world.
BUT, IT SEEMS WE HAVE NOT ONLY MADE THE GOAL, BUT GONE OVER!!
We are waiting for a solid pledge and the finals of the last sponsorship to all go through, but these are pretty sure numbers.
And it looks like our Grand Total, everything in is $35373.90
Can you believe it?
We will be starting the process THIS YEAR!!
Congratulations every one. You all pulled together this last little while and all have brought it through.
I hope you can all feel proud for what we have done, and now, our hopes are pointed at another level all together
Hi Everyone!
Daveman -- I've told you and demo from the beginning that I was certain you guys were going to go over the minimum!!! (I might have even posted that somewhere.)
Congratulations!!!!! Felicidades! Gefeliciteerd! Gratullunk! Вітаємо! מזל טוב! Herzlichen Gleckwunsch! تهانينا! Parabins! Tillykke! поздоровляю! Συγχαρητήρια!
Stef
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Now that we know the research study will be happening relatively soon perhaps we should start determining how many of us would be able to travel, say on a plane to another country, in order to participate in the research. I'm assuming the study will have to be performed in one place where the test subjects would have to travel to. Another factor would be the length of time the study would require the subjects to remain in that area.
I would have the time, but most likely not the money, to travel on a plane and stay at a hotel for instance.
I sort of recall a thread in which we discussed this topic. I'll have to go back and look. *edit* - Couldn't find it.
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In addition we could attempt to compile more data on the location of our members. Perhaps those of us who don't want to reveal what state or city we're near could pm that info to mat780 if he's able to add changes to his POIS map, which is located here: https://sites.google.com/site/poiswebsite/pois-map
We have the data Mellivora collected on which countries we're in as well which could be useful. That list of our #s by country is at this thread and in case anyone wants to add their country who hasn't yet they can post it here: http://poiscenter.com/forums/index.php?topic=299.msg3783#msg3783
So far it looks like we have 34 members' country info and 28 members on the map.
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I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.
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I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.
Interesting question for Stef, Vince
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THANK YOU DAVEMAN
THANK YOU STEF
IT WOULDN'T HAVE HAPPENED WITHOUT YOU!!
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To save some time(and money) should' t we set up some statistic study to help researcher of NORD ?
We could organise informations like :
-who we are, any particular signs, any past/curent desease, family, genetic,
-which symptoms/duration/ severity
-what helps/make symptoms worse
-recurent anomalies in blood test
-anything else?
I know we answered to something comparable for some spanish research...Maybe we can have some result?
Anyways, I'm s?re it's a quite important base for a research especialy if we are numerous to answer(like 100 persons)
We could also show th? result to our docs, Maybe one of them can also find a mysterious point we have all in common that nobody noticed
so far...
Anybody smart with computer to do a quick sharable questionary?
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To save some time(and money) should' t we set up some statistic study to help researcher of NORD ?
We could organise informations like :
-who we are, any particular signs, any past/curent desease, family, genetic,
-which symptoms/duration/ severity
-what helps/make symptoms worse
-recurent anomalies in blood test
-anything else?
I know we answered to something comparable for some spanish research...Maybe we can have some result?
Anyways, I'm s?re it's a quite important base for a research especialy if we are numerous to answer(like 100 persons)
We could also show th? result to our docs, Maybe one of them can also find a mysterious point we have all in common that nobody noticed
so far...
Anybody smart with computer to do a quick sharable questionary?
We've attempted a couple of surveys in the past, for this very reason, try to get information together for researchers beforehand, so they are not spending the research money to do it all themselves.
Our best effort got 33 responses. So it sounds like a good idea, but difficult to implement.
I don't know, perhaps with the research being certain, we could get a better response!
And actually we are still not "officially" over the minimum, but practically we are. We still have to finalize sponsorship commitments etc. but that's all really a matter of "paperwork".
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THANK YOU DAVEMAN
THANK YOU STEF
IT WOULDN'T HAVE HAPPENED WITHOUT YOU
Demografx -- I'd say that you played a rather HUGE roll in making this happen. :-) You're a wonderful motivator!
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Thanks for the Valentine's Day sentiment, Stef!
xo
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I was reading over the NORD research fund program thread and now I see that the research study might use animal subjects instead of humans. I'm curious how likely this would be in our case. Also I'm wondering roughly when the research study would actually begin, now that we've basically reached the minimum fund requirement.
Interesting question for Stef, Vince
Hello Vincent Marcus and Everyone!
I'll answer your questions as concisely as possible.
NORD's research grant program does sponsor studies with animals ("pre-clinical") and with human studies ("clinical").
Many disorders really do need to be studied in animals first.
For example, if there is a known genetic defect (which would have first been identified from human patients), scientists will create a genetically-engineered mouse (or monkey, or even a dog -- there are specific biological reasons as to what type of animal is best). Those animals become the basis for later clinical trials in humans. The animals are bred with the faulty gene, and then studies can be done on the animals to try to find the best way to correct that gene -- or to provide the missing protein or an enzyme to reverse the condition.
(This just happened with a NORD grant, involving a horrendous neurological condition. NORD's MAC awarded the same researcher from Northwestern University four grants -- four years in a row (very unusual!). They knew he was on to something. His study, which also involved his co-investigators, was recently published -- they were able to reverse that terrible disease in the mouse models that were bred using a specific medication! The lead researcher was Dr. Puneet Opal -- here's a press release about that study, described as "ground-breaking." http://www.sciencedaily.com/releases/2011/10/111016132040.htm.)
Clinical trials of that drug in humans with this condition will be starting within the year. It really is ground-breaking!
But with POIS -- nothing is known scientifically. The offending agent(s) that cause such misery are a complete mystery. Possibilities include an auto-immune reaction, an allergy, a neurological condition, a urological condition, a genetic mutation, etc. The possibilities are endless.
(Although I think gynecology can be ruled out). :-)
So the first step would likely be to try to identify what is causing the cascade of overwhelming POIS symptoms -- and how does it get into the circulatory system in the first place? Semen should only exist (biologically-speaking) within a man's genital tract -- it starts in the prostate and leaves through the tip of the penis. This is supposed to be an air-tight system with no barrier leaks -- semen should go nowhere but out!
I suspect that your study will first involve men with POIS, along with control subjects (men without POIS). You likely will not need to travel to the country where the research will be done if "only" tissue specimens are needed. All sorts of human tissues -- blood, semen, saliva -- even skin and hair -- can be specially shipped to the researcher's lab even when the lab is in another country across the sea. And-- the cost of all that is usually picked up by the researcher's lab.
VM -- I'm only guessing here, but I'm inclined to think that this research grant will involve human samples (at the least) and possibly direct, one-on-one human contact with the researcher. If any human tissue is involved it is referred to as a "clinical" study, just FYI.
If I am wrong -- that this study will focus on an animal model of some sort (again, I would be surprised, but I'm not a scientist and not a member of our MAC) -- this is what I want to impart to all of you. Trust the process!
I can't stress this enough. NORD's MAC will be your absolute best advocates. Demo and daveman will compile a list of the most major symptoms and the remedies that have been helpful, from the data on this forum site. Our MAC will appreciate this input fully because there is really nothing in the scientific literature to adequately describe the numerous symptoms of post-orgasmic illness syndrome -- which -- based on some of your posts -- don't only occur post-orgasmically.
The study will be posted in mid-March 2013, then a very laborious and formalized process takes place over a nine-month period. Our MAC will gradually weed out those applicants whose proposals don't have enough scientific merit or potential. The award recipient will be determined by our MAC in mid-late November, 2013. It's a long process -- but there is NO OTHER WAY TO DO IT.
In the meantime -- here's some unsolicited advice which just occurred to me...
There have been a few times when there have been tied scores between the two best researchers for a particular study. Our MAC will discuss these at length -- and often won't/can't budge on their individual scores, despite these open discussions. I've been in on every single teleconference for the past eight years -- and I know that they do this 100% seriously, with utmost dedication and ethically (and for free!).
So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it! I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants! So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half of the the original amount. They end up making up the difference from other resources within their institutions. Our MAC checks everything, including what other resources may be available to the researcher and his team.
But if you men can't afford to kick in some extra money, it's OK!!! It all works out, so I don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!
So -- that's my concise answer. :-)
Stef
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Dear Stef,
Thank you for your Perpetual Illumination!
Appreciative-demo
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Thanks for your reply to my questions, Stef, and for giving us a heads up about the possibility of a tie between award recipients.
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[To study POIS]... I think gynecology can be ruled out. :-)
;D ;D ;D
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LAPOISSE, thank you for responsibly pointing out our need to save time and money!
I've been forum-involved since 2007 and I think we have some good 6 years of data for NORD's selected researchers -- from hundreds of sufferers, searchable - and organized to some degree, such as B_Jim's fascinating compilation of 400+ POIS cases. This should help get more mileage for our $$. So your suggestions and spirit are on the right track. Thanks.
Our resources - which we'll share with NORD's selected researchers - are found at our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
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Thank you, Guthrie!! $500 in donation$ today!!
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Thank you, Anonymous Donor!! $300 in donation$ today!!
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I wonder what sort of study we would want. I was thinking perhaps a brain scan of some sort of a group of POIS sufferers while they're in their worst stage of POIS similar to the PET/CT scan that found physical evidence for chemo brain. If we could prove beyond a reasonable doubt that our bodies undergo some physiological change during POIS it would be a great step forward into being more recognized by the medical community.
I'll have to read over the waldinger papers again since I don't remember how many subjects tested positive for semen allergy. If a decent number did then I suppose a repeat with a control group would be good.
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(http://i858.photobucket.com/albums/ab143/demografx/B1C6D72B-5ABB-4625-A14C-D4D7CE2D68DB-149-0000000C3B3AC963.jpg)(http://catalyst.phrma.org/assets/NORD-Logo.png)
http://rarediseases.org/
POIScenter's Research Fund thermometer (above left):
Awaiting end of February for final tally of Promo
Final values must be confirmed. It won't hurt to go over as Stef writes below:
So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it! I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants! So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half of the the original amount. They end up making up the difference from other resources within their institutions. Our MAC checks everything, including what other resources may be available to the researcher and his team.
But if you men can't afford to kick in some extra money, it's OK!!! It all works out, so I
don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!
Stef
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Thank you everyone who donated!
If this means any remedy for our disorder, then I can finally live a normal and healthy lifestyle! Even if it takes half a decade to develop anything, I am still glad. Thank you!
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We also thank you, Suppertime for your forum contributions :)
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(http://i858.photobucket.com/albums/ab143/demografx/4A190F7C-FBC1-4686-9886-2B45A7CDE796-149-0000001D9D7D7E45.jpg)
http://rarediseaseday.us/
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Thank you everyone who donated!
If this means any remedy for our disorder, then I can finally live a normal and healthy lifestyle! Even if it takes half a decade to develop anything, I am still glad. Thank you!
I empathize greatly. I waited 30 long years for relief, starting with FORUM access (2007). A miracle of sorts.
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Everybody.
I am really sorry about having to have curtailed theoretical discussions and trial relating to POIS cause/remedy, but it really WAS effecting donations.
This was amply demonstrated in how quickly donations increased and continued until we made it to our minimum (AND BEYOND!).
So first I can't express my gratitude and happiness for the acheivement we have made.It is VERY RARE for a forum where nobody has even seen each other face to face, to be able to unite together and put tegether more than $33,000.
Second, given that the big pressure is off, I would like to invite (if you are so willing) moe continued conversation as to theories and ideas. At this point we will be having many researchers checking us out, and we don't want to leave any stone unturned.
I have my pet theories, as does everyone else. But I know I can't say that mine is THE theory, and the investigation and backing that we may put into it does not guarantee anything either, without a thourough and highly controlled program with pre-defined goals.
We cannot hope to implement the level of professionalism that is needed, none of us. But that said. We are a showcase, where ideas and concepts can be displayed for those who have the experience and knowledge to actually do something with it.
We will only ask that we don't use the forum as innocent guinea pigs. We are desparate, and will try anything. Until something goes terribly wrong.
So any tests must go with very strong and specific warnings and should all be accompanied by medical supervision of some type.
Remember, we are being watched by professionals. Let's try to give them something useful, something they would probably do (test) themselves.
Thanks for your cooperation and a job very well done.
BTW. I have checked with those who have made comittments, and I am assured that once details are managed, WE WILL BE OVER $33,500 US DOLLARS.
Congratulations to Amijgoro for being the sponsor who took us over the TOP. And than every donor on the forum, without your $5 or $12.50 we couldn't have done it either.
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Major Congratulations to everyone again!
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I want to thank everybody who made this happen!
But this is still the beginning. We reached the minimum amount for the fund. Research is very expensive. So the guys who pledged money, but didn't give the money yet: please do.
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I have checked with those who have made comittments, and I am assured that once details are managed, WE WILL BE OVER $33,500 US DOLLARS.
Congratulations to Amijgoro for being the sponsor who took us over the TOP. And than every donor on the forum, without your $5 or $12.50 we couldn't have done it either.
(http://i858.photobucket.com/albums/ab143/demografx/B1C6D72B-5ABB-4625-A14C-D4D7CE2D68DB-149-0000000C3B3AC963.jpg)
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Research is very expensive.
Yes it is. This is why we are very fortunate to initiate a "seed grant" -- paid for by POIScenter members.
But this first grant will hopefully attract even MORE funding (next time not $$ from us, but from Government and Industry!), once we have our first POIS research done that is conducted with state of the art controls, systematic theoretical testing and experiments, and top scientific medical research investigators.
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Hi Everyone!
Some of you may know that February 28th (one week from today) is global Rare Disease Day (RDD).
Rare Disease Day was started by NORD's sister organization in Europe -- EURORDIS -- in 2008. That year, the last day of February occurred on the 29th -- a leap day (a rare day!! -- one that only occurs once every four years).
We have a close working-relationship with EURORDIS, and partner with them on many international projects. Our missions are exactly the same -- to help people with rare disorders.
In 2009, EURORDIS invited NORD to be the official sponsors of Rare Disease Day in the US. We took on the challenge (it is a challenge -- a huge undertaking!) and have been sponsoring Rare Disease Day in the US since 2009.
Rare Disease Day is a MAJOR awareness-raising event that takes place around the world. Here are the websites for the EURORDIS and NORD RDD sites -- in case any of you are interested in finding out what's going on around the globe for this event:
EURORDIS -- www.rarediseaseday.org
NORD -- www.rarediseaseday.us
***EURORDIS recently made a RDD video that I thought you might like to see. It's unique -- unusual -- not what I expected. I think it's a terrific video, and is only ~ three minutes long. I think it really captures the message that rare disorders cause the same difficulties, regardless of where on this earth one lives.
Here's the link to the EURORDIS video -- http://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be.
I hope that it touches you.
Stef
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Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.
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In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:
"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."
On 6th September 2007 I wrote:
"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."
It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year :)
Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.
Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.
We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..
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Here's to us, to NORD and to medics who want to help us.
(http://3.bp.blogspot.com/_871SdrUIr8Q/TNdYmpO482I/AAAAAAAABRI/XNOQKBqvkZQ/s1600/champagne%2Bpopping.jpg)
As B_Jim writes: "not to be confused with orgasm"
(we don't want to be responsible for any POIS as a result of viewing this post :) ).
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Thanks Stef! The film has a nice message that people with rare diseases are people like anyone else - with feelings, ambitions, hopes and love like anyone else.
-------
In my first post on the Naked Scientists forum back in 22 August 2007, I wrote:
"I'm not sure of the best way to make this condition of ours more widely recognised and researched but I think that is what it needs. Lets try and club together and work towards that."
On 6th September 2007 I wrote:
"We now have eight people on this forum (including myself) who have come forward with POIS or seemingly related conditions and I think the forum is evolving into a persuasive tool toward gaining wider recognition for our syndrome. I suggest we start (if you haven't already!) to make any sexual medicine professionals that we are in contact with aware of this forum thread to raise awareness. I have included the link to this thread in emails to two doctors well respected in sexual medicine and I hope you are all ok with me taking this step. It seems to be all of our aims to raise awareness and get our conditions more widely researched. I'll let you know if I hear of any developments."
It took more people and in many respects bigger people than me to make it happen and I'm grateful to every one of you. It seems we'll get our research grant this year :)
Let's not forget John21 who made the first post on the NS forum. That was 6 YEARS AND 3 DAYS AGO!!! 6 YEARS!!! I think its inevitable given the existence of the internet that we'd have found each other although I'm glad it wasn't any later than 6 years ago! Feel lucky that you live in a time when we've been able to find and communicate with each other. Things could be much more lonely without this amazing technology, as they actually were for some of us for so long in the days when POIS didn't even have a name and seemingly wasn't recognised by anyone except the isolated people that suffered its life-ruining symptoms in silence.
Thank goodness for the likes of Demo and B_Jim and later Daveman who kept the cogs turning for so long. We've meandered all over the place but like a river we've gathered volume and momentum and managed to flow in roughly one direction. Soon a whole sea of people will know about us and hopefully we'll wash up on paradise island, POIS-free.
We all have each other and ourselves to thank. Here's to us, to NORD and to medics who want to help us. We are no longer just treading water. In fact we might have just built ourselves a raft..
Mel,
How beautifully you write!!!
In the US a popular slogan is, "It takes a village."
In the world of POIS -- it took a forum of men -- who often could barely eke out a living due to the disability that POIS inflicts -- to trust the process and make donations when they were able.
From my outsider perspective, one of the most amazing things to observe was the support and encouragement here. If you men only knew how truly AMAZING that is!!!!!!
I keep thinking of Demo -- how he struggled for probably more than 50 years before realizing why he was struggling so terribly -- that it was not a personal character defect! I guess we'll never know how he made it through. (Even Demo says he doesn't know how he did it!)
And then he had the fortitude to tough it out -- brave the push-back -- and forge ahead.
You have all passed an incredible milestone -- and you will not be disappointed. I am certain of this!!
There is nothing except solid, scientific research into this miserable, rotten, son-of-a-gun condition.
And just think of the countless others whose lives you will have vastly improved -- or even saved!
Stef
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Stef, I don't know how we can thank you enough!
Demo
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Hi Everyone!
Some of you may know that February 28th (one week from today) is global Rare Disease Day (RDD).
Rare Disease Day was started by NORD's sister organization in Europe -- EURORDIS -- in 2008. That year, the last day of February occurred on the 29th -- a leap day (a rare day!! -- one that only occurs once every four years).
We have a close working-relationship with EURORDIS, and partner with them on many international projects. Our missions are exactly the same -- to help people with rare disorders.
In 2009, EURORDIS invited NORD to be the official sponsors of Rare Disease Day in the US. We took on the challenge (it is a challenge -- a huge undertaking!) and have been sponsoring Rare Disease Day in the US since 2009.
Rare Disease Day is a MAJOR awareness-raising event that takes place around the world. Here are the websites for the EURORDIS and NORD RDD sites -- in case any of you are interested in finding out what's going on around the globe for this event:
EURORDIS -- www.rarediseaseday.org
NORD -- www.rarediseaseday.us
***EURORDIS recently made a RDD video that I thought you might like to see. It's unique -- unusual -- not what I expected. I think it's a terrific video, and is only ~ three minutes long. I think it really captures the message that rare disorders cause the same difficulties, regardless of where on this earth one lives.
Here's the link to the EURORDIS video -- http://www.youtube.com/watch?v=n6HReXaUUSw&feature=youtu.be.
I hope that it touches you.
Stef
(http://i858.photobucket.com/albums/ab143/demografx/4A190F7C-FBC1-4686-9886-2B45A7CDE796-149-0000001D9D7D7E45.jpg)
http://rarediseaseday.us/
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Hi Everyone,
I can't stress this enough. NORD's MAC will be your absolute best advocates. Demo and daveman will compile a list of the most major symptoms and the remedies that have been helpful, from the data on this forum site. Our MAC will appreciate this input fully because there is really nothing in the scientific literature to adequately describe the numerous symptoms of post-orgasmic illness syndrome -- which -- based on some of your posts -- don't only occur post-orgasmically.
The study will be posted in mid-March 2013, then a very laborious and formalized process takes place over a nine-month period. Our MAC will gradually weed out those applicants whose proposals don't have enough scientific merit or potential. The award recipient will be determined by our MAC in mid-late November, 2013. It's a long process -- but there is NO OTHER WAY TO DO IT.
In the meantime -- here's some unsolicited advice which just occurred to me...
There have been a few times when there have been tied scores between the two best researchers for a particular study. Our MAC will discuss these at length -- and often won't/can't budge on their individual scores, despite these open discussions. I've been in on every single teleconference for the past eight years -- and I know that they do this 100% seriously, with utmost dedication and ethically (and for free!).
So, my suggestion --> if you men can afford to kick in a bit of extra money for your grant -- do it! I have a sense that there will be numerous, excellent applicants for your one grant -- which will increase the chances of tied scores -- ending up with you having two researchers and two entirely separate grants! So far, every time this has happened (3-4 times), the researchers have ALWAYS been thrilled to receive the funding -- even if it's reduced to half of the the original amount. They end up making up the difference from other resources within their institutions. Our MAC checks everything, including what other resources may be available to the researcher and his team.
But if you men can't afford to kick in some extra money, it's OK!!! It all works out, so I don't want any of you to worry about donating extra money! It simply just occurred to me -- the tied-score possibility and -- best of all -- two, separate grants!!!!! I HOPE THAT HAPPENS!!!
So -- that's my concise answer. :-)
Stef
Just to make sure I've understand it correctly, after mid-March (March 22nd) we won?t be able to give more money to our research grand although the research isn?t expected to start before mid-November?
I suppose the answer Is that we won?t (because the researcher has to know in advance the funds he/she is going to have available). But I just wanted to confirm it.
Thanks,
PBO.
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PBO, I asked Stef, and she replied, "You can tell [PBO] that he's correct -- the grant will be offered at the amount that's in your fund at the time the RFP is announced. Stef"
Fully understood Demo.
Thanks for your reply,
PBO.
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Its kinda quiet in here since we reach the goal ;
I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )
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(http://i858.photobucket.com/albums/ab143/demografx/B1C6D72B-5ABB-4625-A14C-D4D7CE2D68DB-149-0000000C3B3AC963.jpg)
In February, $2,542.90 was raised.
That gives us $33,677.00 since the balance of Feb 13 ($31,937.00) plus $1,240.00 (amijgoro) plus another $800.00 came in, to which Amij does not contribute.
For......... a grand total of....................... $33,677.00 + $800.00 = $34,477.00 (we benefit by going over the $minimum)
(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)
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Its kinda quiet in here since we reach the goal ;
I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )
;D ;D ;D
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I think we have made an incredible progress these last years: We are very near from our research objective, more and more people are joining our forum and discovering that they have POIS and that they are not alone, our experiences and the methods we tried are helping more and more people enormously, and we are even making amazing hypothesis about our problem that are sounding real and very possible. We are advancing so fast that I really believe that there is a shiny light at the end of the tunnel. Our problem will be solved very soon and this will happen because of us and our effort, and despite all the struggles we have to suffer. This is simply amazing.
Beautifully said, Observer! :)
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Beautifully said, Observer! :)
As I said there are more and more reasons to be optimistic about the future. More research -> More publicity -> More people realizing they have POIS -> More research in the medical community, this can only get better
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What's next for us?
(http://www.drugabuse.gov/list/2009/issue009images/research_animation.gif)
Finally!
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PBO, I asked Stef, and she replied, "You can tell [PBO] that he's correct -- the grant will be offered at the amount that's in your fund at the time the RFP is announced. Stef"
Fully understood Demo.
Thanks for your reply,
PBO.
You're correct, demo -- March 22nd is the cut-off date for all RFP donations for 2013.
NORD must have the full amount of a grant before we can post it as a RFP. We'll probably post the 2013 RFPs during the week of March 25th. The latest they'd be posted is the first week in April -- and that would only happen because our IT staff is is a bit short-staffed right now (NORD's IT manager has been on sick leave because of his own rare disorder!).
If the group can raise a little more than the minimum (which it already has done!) -- it's always for the best -- for the sake of the research. That money will all go to the researcher (aside from the NORD administrative fee of $3,500 -- which doesn't change, regardless of the amount of the grant). That administrative fee covers numerous expenses (mailings, countless long-distance phone calls and behind-the-scenes EXTRA HOURS of staff time) -- in truth, we often don't break even.
(I just spoke by phone last week with a researcher in Italy -- I had to call her to clarify something in her interim progress report -- an email would not have worked in this case. It took a few separate phone calls until I was able to finally reach her! That's just one example of one type of expense -- we don't have a special phone plan for long distance phone calls. )
The NORD program for research grants is absolutely not a profit-making program for NORD -- it never was, and probably never will be. It's purpose is to support scientific research for rare disorders, for which funding does not exist elsewhere. POIS fits that description more than any rare disorder that I'm aware of!!
As I've posted before on the forum, just getting to where the POIS forum's fund has gotten to at this point is TOTALLY AMAZING!!!
The forum members should know that based on the minimum amount of $33,500 -- 90 cents of every dollar will go directly to the research.
You men have done magnificently!!!!!
If you feel it would be helpful, please feel free to post this message on the forum, Demo.
Stef
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(http://www.drugabuse.gov/list/2009/issue009images/research_animation.gif)
THERE IS NOW OFFICIALLY $34,500.90 IN OUR NORD-POIS MEDICAL RESEARCH GRANT FUND!!
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Demografx, now the donations is over? If I donate more money it won't go to this survey? I'm asking that because I was donating monthly and, if we can't donate more, I have too cancelate my next donations...
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Fidalgo and others!
Donations are still good thru March 22, 2013!!
It will help!
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Fidalgo and others!
Donations are still good thru March 22, 2013!!
It will help!
Adn after that?
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Awaiting Stef's reply, Fidalgo.
Thank you for your patience.
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I think I know why I am bad-tempered on day 1 of POIS. I think in my case it's because of lack of sleep. The POIS makes the sleep apnea worse. Most of people who have sleep apnea are bad-tempered because of the lack of sleep.
About a few weeks my tonsils are going to be removed. I hope that I will no longer have sleep apnea. So then I hope to lose that irritability.
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Fidalgo and others!
Donations are still good thru March 22, 2013!!
It will help!
And after that?
Fidalgo: from our correspondence about your question:
Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"
nordnurse: "Yes. If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).
Stef"
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I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )
(http://i797.photobucket.com/albums/yy260/caseyjex/Desert-Island.gif)
OK BUT NOT THIS ONE!
;D
-
Here's to us, to NORD and to medics who want to help us.
(http://3.bp.blogspot.com/_871SdrUIr8Q/TNdYmpO482I/AAAAAAAABRI/XNOQKBqvkZQ/s1600/champagne%2Bpopping.jpg)
Thank you, guys, for being incredible teammates!
-
Fidalgo and others!
Donations are still good thru March 22, 2013!!
It will help!
And after that?
Fidalgo: from our correspondence about your question:
Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"
nordnurse: "Yes. If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).
Stef"
We are going to need another research grant some time in the near future, one probably wont be enough
-
Fidalgo and others!
Donations are still good thru March 22, 2013!!
It will help!
And after that?
Fidalgo: from our correspondence about your question:
Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"
nordnurse: "Yes. If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).
Stef"
We are going to need another research grant some time in the near future, one probably wont be enough
Yes, and I don't think that's such a bad thing.
This first one should set us on a true road, one that should reduce or stop the widespread shooting in the dark in all directions.
I think it should also establish POIS as a real condition and give it credibility if not a solution in the eyes of the medical profession.
Much more ammunition for us to take into the doctor's office.
-
I think I know why I am bad-tempered on day 1 of POIS. I think in my case it's because of lack of sleep. The POIS makes the sleep apnea worse. Most of people who have sleep apnea are bad-tempered because of the lack of sleep.
About a few weeks my tonsils are going to be removed. I hope that I will no longer have sleep apnea. So then I hope to lose that irritability.
Hi VM (and Everyone!)
Van -- I'm sorry to hear about this sleep apnea that you're experiencing. It's so true -- sleep apnea causes interrupted sleep -->fatigue and irritability would be natural consequences.
Also, despite the current lack of basic knowledge about POIS -- which affects people in different (and also similar) ways -- it sort of makes sense to me that POIS could worsen sinusitis. There seems to be such an inflammatory reaction, or maybe it's an allergic one -- or a combination of both (not known yet!) --and that if one is prone to sinusitis -- POIS would worsen it.
We're all wishing you the best with the tonsillectomy!!!! I think you'll feel pretty sore and miserable the first week due to the surgery -- but will then start to feel much better. Please let us know when you're going to have it done. If you've already had it done, let us know how you're doing when you feel up to it.
Most of all -- I hope it helps with the sleep apnea!!
POIS or no POIS -- sleep apnea is a serious condition on its own, and affects general health. But fortunately it's common and can be treated.
Stef
-
Thankyou Stef. I will. But al lot of people have sleep apnea but they don't know they have it. And it takes a long time before a doctor gives the diagnosis sleep apnea.
-
Hello all, new member here. So I just learned this syndrome this morning after make a post on Reddit that described my symptoms. I'm rather relieved to learn that I'm not alone. Here is the text of the post I made yesterday on Reddit for all of you to see:
I was hoping someone could help me understand what's going on chemically in my body that affects me so much after an orgasm. These phenomena didn't happen when I was younger, but for the past few years it's been driving me nuts.
Whenever I have an orgasm the following things plague me for about 24 hours:
- A huge drop in motivation. I'll literally won't want to do anything and just want to feel normal again. I want to stay away from people. I don't want to talk or think.
- Trouble falling to sleep. This might be the worst of it all. I'll feel extremely restless. Having an orgasm right before falling asleep is the worst. I'm either not able to sleep or I'll have sleep starts (hypnic jerks) that wake me up in a terrifying manner. Speaking of terrifying, my dreams are other worldly and disturbing, and when I wake up in the morning I don't feel well rested.
- Clumsiness. In addition to my lack of motivation, my coordination becomes very off. I knock things over. I find it more difficult to plan the sequence of physical things, like making cereal for breakfast. You know, get the bowl, pour in milk, put milk away. Which hand do I carry what in? I don't know!
- Panic attacks. This kind of goes hand in hand with the inability to sleep. I'll feel my heart beating hard in my chest. I have to keep moving. I feel cold and detached from my body.
Within an hour after an orgasm they're at their worst and slowly wear off after 24 hours. Then I'm my normal self again... confident, focused, witty and relaxed with pretty much none of the problems above.
It's gotten to the point where I only want to have sex with my wife or masturbate on the weekend because I don't want to feel like this at work.
Just this past Sunday my wife and I had really good sex before bed. We cleaned up and passed out quickly. Then I had this sleep start that shook the bed. My wife asked if I was OK. Our one year old had trouble sleeping through a lot of the night. So I ended up getting only a few hours sleep and they were not good ones (bad dreams). The following day (yesterday) I was a wreck at work. A lack of sleep makes these symptoms even worse.
Like I said, this didn't happen in my teens and twenties, which happened to be a time when I masturbated a lot and had sex whenever I could. In my 30s though, I've had to cut back because it really fucks me up.
Can anyone shed some light?
TL;DR - After having an orgasm I feel unmotivated, clumsy, nervous and have trouble sleeping for about a day. WTF is going on with my body?
After learning that this is an actual syndrome I'm totally abstaining from sex and masturbation until further notice. I've never had a true nocturnal emission in my life because I've always masturbated regularly. So I'm not sure if I should be worried about that. I am worried about how my wife will react to this though.
I'm amazed that some of you deal with these symptoms for multiple days. For me, I'm the worst for about 24 hours and then pretty much normal but not 100%. After two full days I'm cured for sure.
Well, nice to meet you all.
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It's a pleasure to have you with us, idrink211.
The things that I've found to help my cognitive problems during POIS the most are fenugreek+tea/garlic, huperzine, and ginkgo biloba. Niacin seems to have been effective for more of us though(flush required).
-
Welcome, idrink211! :) Please see our Welcome Post for resources for you:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
-
Fidalgo and others!
Donations are still good thru March 22, 2013!!
It will help!
And after that?
Fidalgo: from our correspondence about your question:
Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"
nordnurse: "Yes. If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).
Stef"
We are going to need another research grant some time in the near future, one probably wont be enough
Yes, and I don't think that's such a bad thing.
This first one should set us on a true road, one that should reduce or stop the widespread shooting in the dark in all directions.
I think it should also establish POIS as a real condition and give it credibility if not a solution in the eyes of the medical profession.
Much more ammunition for us to take into the doctor's office.
Yes. And so far, we have accomplished the HARDest part:
Getting the very FIRST Grant!!
-
Just donated $250...Plan to do it again.
Thank you, bjameshill!
-
Hello! I would like to know where I can go to donate money; and also if someone can tell me how come Post Orgasmic Illness Sydnrome is not in the rare diseases database in the rarediseases.org website? Thank you.
-
There is 640 members here. The community is growing up. I think we need to keep communicate about POIS. The more we are, the most we have chance to get attention on our condition.
-
There is 640 members here. The community is growing up. I think we need to keep communicate about POIS. The more we are, the most we have chance to get attention on our condition.
Especially as the research activity starts to develop.
I'm sure that our forum would have to be one of the principal places researchers go to find information that would be difficult to get other places. Of course it is not controlled information, but it is very good referential information.
And at the same time, new members just finding out about POIS for the first time, may find benefit and can start connecting to a real direction.
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Hello! I would like to know where I can go to donate money; and also if someone can tell me how come Post Orgasmic Illness Sydnrome is not in the rare diseases database in the rarediseases.org website? Thank you.
Here is the link for donating!
http://poiscenter.com/forums/index.php?topic=173.msg1750#msg1750
And we are on the NORD Database I'll have to find you the link....
-
[Clycos], we are on the NORD Database I'll have to find you the link....
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail
-
Attention iPhone users:
To get your RSS feed of POIScenter.com on your iphone, copy and paste this link into Safari - your Web browser:
Or just click now and bookmark it.
http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom
-
Hello, Everyone!
First, my apologies to you for not being able to provide an update about your research grant until today. NORD has been going through its annual financial audit for the past two weeks, so it's been very difficult to sort out all of our research grant funds in a more timely manner.
But we did it -- and you men have done splendidly!!! You have officially surpassed the minimum amount to offer for a grant!
In total, you've raised $34,850. NORD's administrative fee is $3,500. This leaves you with a $31,350 grant award to offer. This translates to 90 cents of every dollar going directly to your research.
Your POIS grant will be posted online some time next week (the week of April 1st). I'll provide the link to it (to the "RFP") in [the NORD Research Grant thread/section of your forum ASAP.]
You really, truly did a wonderful job.
Congratulations!!!
Stef
-
Thankyou stef !!! And demo !!!
-
Thank you stef !!! And demo !!!
And Daveman !!!
And everyone else who supported the NORD notion for POIS !!!
-
Attention all POISers: POIS GRANT NEWS!
Please visit Stef's new thread,
"POIS RFP, 2013"
http://poiscenter.com/forums/index.php?topic=1012.0
-
Stef ("nordnurse") informs us "Thousands -- literally -- receive "NORD" google alerts. :-) "
TODAY!
---------- Forwarded message ----------
From: Google Alerts <googlealerts-noreply@google.com>
Date: Wed, Apr 10, 2013 at 12:37 AM
Subject: Google Alert - post orgasmic illness syndrome
To: demografx
Web 1 new result for post orgasmic illness syndrome
POIS - National Organization for Rare Disorders
Announces. Research Seed Grant Funding for one, one-year grant ($31,000) for. Post-Orgasmic Illness Syndrome (POIS). Submission Deadline: May15, 2013 ...
www.rarediseases.org/docs/research-grants/POIS.doc
-
I would assume doctors know how to objectively test neurochemical imbalances in the human brain by now.
Fascinating new developments in analyzing the human brain. Here's one in today's news:
http://touch.latimes.com/#section/-1/article/p2p-75334338/
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I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
-
RFP NEWS :)
--------------------------------------------------------------------------------------------
---------- Forwarded message ----------
From: Health Consultantcy
Date: Tue, Apr 16, 2013 at 10:37 AM
Subject: Fw: Today's RFPs from Philanthropy News Digest
To: Stefanie Putkowski
Stef,
First, glad that you are safe and sound.
Just received this update from the Foundation Center about the POIS Restricted Research Grant; what a good avenue of public awareness! Hope that you receive many responses to this RFP.
Best wishes,
Consultant
----- Forwarded Message -----
From: PND RFP Alerts <PND_RFP@foundationcenter.org>
To: Consultant
Sent: Tuesday, April 16, 2013 6:33 AM
Subject: Today's RFPs from Philanthropy News Digest
April 16, 2013
The following requests for proposals have been posted to Philanthropy News Digest:
National Organization for Rare Disorders Invites Proposals for Post-Orgasmic Illness Research Projects
A grant of of up to $31,000 will be awarded to initiate or advance research and understanding of POIS, the results of which could be used to obtain funding from other sources....
Deadline: May 15, 2013
Posted: April 16, 2013
You received this e-mail because you subscribed to PND RFP Alerts with the username "jfrc914." To change the subjects of your alerts or to unsubscribe, click here.
Foundation Center • 79 Fifth Avenue, New York, NY 10003 • (212) 620-4230
-
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
Welcome, nenexx! Please visit our Welcome Page, many resources for you:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
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Have read almost the whole thread now. Is there anything I can do to help except completing the survey to that spannish doctor?
EDIT: One more question, is it any of you that started the facebook page about this? I saw this on there:
Post Orgasmic Illness Syndrome (POIS)
den 31 mars
After some research there is a strong possiblity that Low Igm and Igg levels can be the key to POIS. Please go to an ifectious disease doc and ask for a full immune panel and get back to us, even if the doc says your numbers are "normal" Share with us your numbers, do not wait.
-
just a reminder...
Attention all POISers: POIS GRANT NEWS!
Please visit Stef's new thread,
"POIS RFP, 2013"
http://poiscenter.com/forums/index.php?topic=1012.0
-
We did it! $31,000 POIS Grant!
(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)(http://www.registeredevil.com/wp-content/uploads/2010/09/Happy-Birthday-Animated-86-7YMVHYA2NJ.gif)
Pass it on! Show the world!
http://tinyurl.com/bwhbn5k
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I want to write about this on the biggest forum in Sweden. I want to help raise awareness and maybe some people recognize thereselves in the issue. Since I'm not the best writer myself I would very much like a mould(don't know if this is the correct word) so I do this in the best way possible. Any suggestions? Maybe I could use the reddit thread and change a few things that's personal for him? Also, is this anything you've been talking about, suggesting to people that they make a post on big forums in their countrys to make more people aware of this?
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Excellent ideas and suggestions, nenexx! :)
We have had great success (with many thanx to "Observer") in exposing the wider population of Spain to the existence of POIS via their national newspaper, El Mundo:
www.poiscenter.com
Australia: via ABC Documentary TV Program (see Mat780's POISChannel on YouTube)
www.youtube.com/POISchannel
-
-----Original Message-----
From: Google Alerts <googlealerts-noreply@google.com>
To: POIScenter.com
Sent: Mon, Apr 22, 2013 5:33 pm
Subject: Google Alert - Postorgasmic Illness Syndrome
Web 1 new result for Postorgasmic Illness Syndrome
Postorgasmic illness syndrome | Disease | Overview | Office of ...Please contact us with your questions about Postorgasmic illness syndrome We will answer your question and update these pages with new resources and ...
http://rarediseases.info.nih.gov/gard/10809/postorgasmic-illness-syndrome/resources/1
--------------------------------------------------------------------------------
-
I want to write about this on the biggest forum in Sweden. I want to help raise awareness and maybe some people recognize thereselves in the issue. Since I'm not the best writer myself I would very much like a mould(don't know if this is the correct word) so I do this in the best way possible. Any suggestions? Maybe I could use the reddit thread and change a few things that's personal for him? Also, is this anything you've been talking about, suggesting to people that they make a post on big forums in their countrys to make more people aware of this?
Hi nennex.
You can find good information here at the following address. It was created to recompile a basic introduction to POIS for those who may be interested.
http://poisenglish.blogspot.com.es/
You may take pieces of it for you "model", or even put the link into anything you wish to write.
This link has references to all our pertinent POIS resources, including this forum and the google "compendium" by Matt et al.
Thanks for spreading the word.
-
From respectable Duke University
---------- Forwarded message ----------
From: Google Alerts <googlealerts-noreply@google.com>
Date: Sun, Apr 21, 2013 at 1:39 AM
Subject: Google Alert - post orgasmic illness syndrome
To: POIScenter.com
Web 1 new result for post orgasmic illness syndrome
Proposals for Post-Orgasmic Illness Research Projects - Funding ...
COM, is accepting applications for a scientific or clinical seed grant dedicated to Post-Orgasmic Illness Syndrome (POIS). POIS has been only recently reported, ...
https://researchfunding.duke.edu/detail.asp?OppID=13771
-
NORD received a donation for the POIS research grant a few days ago. The donor sent an inspiring message along with the donation, and has given NORD permission to pass that message along to the forum (at Stef's request) --
"Make good use of the donation and try to find a cure for POIS. It will benefit many people who are silently suffering and it will be a blessing in return."
-
RFP NEWS :)
--------------------------------------------------------------------------------------------
---------- Forwarded message ----------
From: Health Consultantcy
Date: Tue, Apr 16, 2013 at 10:37 AM
Subject: Fw: Today's RFPs from Philanthropy News Digest
To: Stefanie Putkowski
Stef,
First, glad that you are safe and sound.
Just received this update from the *Foundation Center about the POIS Restricted Research Grant; what a good avenue of public awareness! Hope that you receive many responses to this RFP.
Best wishes,
Consultant
*PND/Foundation Center • 79 Fifth Avenue, New York, NY 10003 • (212) 620-4230
(http://i858.photobucket.com/albums/ab143/demografx/5F80B109-A22D-43C1-8654-72990913B66E-364-0000003D4D4E4B69.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/FDB67FC6-5C3F-4C90-A9CA-51BE6870303A-364-0000003B08BB5F4F.jpg)
-
Thanks anonymous donor!!!
NORD received a donation for the POIS research grant a few days ago. The donor sent an inspiring message along with the donation, and has given NORD permission to pass that message along to the forum (at Stef's request) --
"Make good use of the donation and try to find a cure for POIS. It will benefit many people who are silently suffering and it will be a blessing in return."
-
AOL VIDEO on POIS
http://on.aol.com/video/post-orgasmic-illness-syndrome-explained-517640680
-
Firstly, I'm amazed this made it onto "Drs.", a REALLY popular show here in the US. Second, I'm amazed at how this "expert" on tv claimed to know what the cause of POIS is when the verdict is very much still out! I've watched this show before, and seen this kind of broad-brushing before. They get a problem, and get a solution, then focus camera's on the hired models who sit in the front row to make you react to how pretty they are.
Ugh, Im kind of torn on this one. I've been in organizations where the idea that "There's no such thing as bad news", but they never caught traction. Truth and facts are really important, and I'm embarassed to have had that show use our obviously eyebrow-raising illness for material on their show without being sensitive to us, the sufferers. I am happy though that at the end the main host encouraged those who had this issue to seek help, that's exactly what POIS sufferers need when they don't know they have it.
What do you guys think? Thanks for the post demo
-
Welcome, Nightingale ! :)
-
Important announcement.
Dr. Salamanca of Madrid, who has worked with us in the past, and who did a POIS survey, which we announced here and which many of you answered,
has begun a new treatment which seems to have fairly good results.
Unfortunately I do not know much about the treatment, but have heard from at least one of his patients, who has reported good results from this treatment.
Dr. Salamanca is looking for people near Spain who could participate in more extensive tests
of this treatment.
Those who are interested, would have to go to his office in Madrid, as the tests require strict control and regular monitoring.
Members interested would have to be pre-screened and several tests would have to be taken beforehand. Unfortunately I do not know how often you would
be required to report to his office.
Interested members send me and Demo a PM expressing your interest, and we will pass your EMail and data to the good doctor, from whence you could continue
your contact personally.
I'm sorry that he cannot open the testing for now without personal appearances in his office, we could reach many more of you this way, but it
is important that these initial tests are controlled and closely monitored.
-
this great news. can i post it on the other forum.
-
Daveman, but do you know in which direction is this doctor going, autoimmune, hormonal or some else?
-
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
Hi nenexx
I often feel the cold more when in POIS. I don't know if my core temperature actually falls but it feels like it does and I feel I need to wear more clothing than normal.
I started a poll for this here:
http://poiscenter.com/forums/index.php?topic=286.0
-
Important announcement.
Dr. Salamanca of Madrid, who has worked with us in the past, and who did a POIS survey, which we announced here and which many of you answered,
has begun a new treatment which seems to have fairly good results.
Unfortunately I do not know much about the treatment, but have heard from at least one of his patients, who has reported good results from this treatment.
Dr. Salamanca is looking for people near Spain who could participate in more extensive tests
of this treatment.
Those who are interested, would have to go to his office in Madrid, as the tests require strict control and regular monitoring.
Members interested would have to be pre-screened and several tests would have to be taken beforehand. Unfortunately I do not know how often you would
be required to report to his office.
Interested members send me and Demo a PM expressing your interest, and we will pass your EMail and data to the good doctor, from whence you could continue
your contact personally.
I'm sorry that he cannot open the testing for now without personal appearances in his office, we could reach many more of you this way, but it
is important that these initial tests are controlled and closely monitored.
That's very good and hopeful to hear !Any Pois sufferer who lives in SPAIN or better in Madrid,should go..Its very nice to have this doctor doing this for us and we must not lose this good oppurtunity!If i am not mistaken we have a lot of members who live in Spain..This totally worth it.
-
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
Hi nenexx
I often feel the cold more when in POIS. I don't know if my core temperature actually falls but it feels like it does and I feel I need to wear more clothing than normal.
I started a poll for this here:
http://poiscenter.com/forums/index.php?topic=286.0
Thanks for answering. I get like shivers and shit which stops when I've gone like 1 or 2 weeks without orgasm(don't know for sure howlong) Great to get it confirmed that others have the same (great and great...).
-
I have almost every symptom of this.. I just have one question: Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
Hi nenexx
I often feel the cold more when in POIS. I don't know if my core temperature actually falls but it feels like it does and I feel I need to wear more clothing than normal.
I started a poll for this here:
http://poiscenter.com/forums/index.php?topic=286.0
Thanks for answering. I get like shivers and shit which stops when I've gone like 1 or 2 weeks without orgasm(don't know for sure howlong) Great to get it confirmed that others have the same (great and great...).
Hey guys.
Same happens to me. It was roughly 20 degrees(celsius) the other day and i was so cold that i needed a blanket. Usually takes me 4-5 days to slowly get back to normal.
Do any of you get canker sores? Anything related to POIS? I heard it could be stress but for me foods are definite trigger as well(mostly hot and acidic) and sometimes after O i notice it so not sure if there's anything to that.
Also wanted to say that you guys are doing great work on here. This place has so much helpful info so thanks for making it easier on us.
I'm in Canada(Ottawa).
-
this great news. can i post it on the other forum.
Sure! :)
-
Do you guys freeze a lot more after orgasm? Cause that's one of my symptoms, esp in the morning I freeze as hell.
Hi nenexx, yes I am also much more sensitive to the cold after an orgasm. (I always imagined that if I ever somehow fell into icy water with pois I'd 'prolly die so much sooner).
-
Something Daveman mentioned about warm days being better..Definitely agree but this winter was fairly good(mostly mild POIS) for me. Had O at least once, sometimes twice a week. Winter before this one, it was horrible so i know the difference is pretty big. I kept my self busy for most part(cooking foods i like, sports, watching movies) and made sure that i ate well and get plenty of rest. Now that summer is coming i should be feeling even better but my sleep is somehow worse and i am getting a lot of tension in neck/shoulder area. This is causing me significant brain fog(in fact during winter i rarely had it). It's been like that for about a week so i ordered some Jamieson Relax and Sleep(with valerian and other herbs) and hoping this will get my sleep back(it says relief of nervous anxiety, muscle relaxant, restful sleep). Anyone try these? There don't seem to be any serious side effects so i'll give it a try and let you guys know.
-
Important announcement.
Dr. Salamanca of Madrid, who has worked with us in the past, and who did a POIS survey, which we announced here and which many of you answered,
has begun a new treatment which seems to have fairly good results.
Unfortunately I do not know much about the treatment, but have heard from at least one of his patients, who has reported good results from this treatment.
Dr. Salamanca is looking for people near Spain who could participate in more extensive tests
of this treatment.
Those who are interested, would have to go to his office in Madrid, as the tests require strict control and regular monitoring.
Members interested would have to be pre-screened and several tests would have to be taken beforehand. Unfortunately I do not know how often you would
be required to report to his office.
Interested members send me and Demo a PM expressing your interest, and we will pass your EMail and data to the good doctor, from whence you could continue
your contact personally.
I'm sorry that he cannot open the testing for now without personal appearances in his office, we could reach many more of you this way, but it
is important that these initial tests are controlled and closely monitored.
"When it rains, it pours" [with opportunities!]...Thank you, Daveman!
-
Firstly, I'm amazed this made it onto "Drs.", a REALLY popular show here in the US. Second, I'm amazed at how this "expert" on tv claimed to know what the cause of POIS is when the verdict is very much still out! I've watched this show before, and seen this kind of broad-brushing before. They get a problem, and get a solution, then focus camera's on the hired models who sit in the front row to make you react to how pretty they are.
Ugh, Im kind of torn on this one. I've been in organizations where the idea that "There's no such thing as bad news", but they never caught traction. Truth and facts are really important, and I'm embarassed to have had that show use our obviously eyebrow-raising illness for material on their show without being sensitive to us, the sufferers. I am happy though that at the end the main host encouraged those who had this issue to seek help, that's exactly what POIS sufferers need when they don't know they have it.
What do you guys think? Thanks for the post demo
Nightingale,
Sorry for this belated reply to your post. I know you were asking the "guys" -- but I had to chime in!
I think that your post is spot-on, 100% correct-- I could not agree with you more about everything you wrote.
"The Doctors" did a much more brief segment on POIS several months earlier. (I learned about it through a POIS google alert.) I watched the clip from that earlier segment. To my utter disbelief -- they actually ended up joking about POIS! I was so disturbed about it that I posted something directly onto their website, mentioning the stigma of POIS, the isolation that people with all rare diseases experience, NORD, blah, blah-- I did not mince words. (Never got a reply, and did not expect to.)
This more recent segment was a vast improvement. That "expert" they had on is a urologist -- I think from Beverly Hills -- with no obvious experience with POIS -- no publications, nothing on his own website about POIS, etc.
As you said, the one saving grace was that the main host did not turn POIS into a joke this time, and they were all sympathetic this time around.
Stef
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As you said, the one saving grace was that the main host did not turn POIS into a joke this time, and they were all sympathetic this time around.
We have certainly been turned into a joke before. Here's one example:
http://www.thespoof.com/news/science-technology/80082/who-declares-postorgasmic-illness-syndrome-1-threat-against-humanity-boner-wise
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As you said, the one saving grace was that the main host did not turn POIS into a joke this time, and they were all sympathetic this time around.
We have certainly been turned into a joke before. Here's one example:
http://www.thespoof.com/news/science-technology/80082/who-declares-postorgasmic-illness-syndrome-1-threat-against-humanity-boner-wise
Hi, Demografx --
I just read the POIS "spoof" from 2010 that you posted.
It definitely mocked POIS (at first), but somehow then turned into a real plea for scientific investigation -- even encouraging forum members (I think directed to NSF at that time) to "write letters to every public and private sexual health researcher, relentlessly, until someone publicly decides to champion their cause."
I agree with that!
Stef
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I'm just gonna put it out there. I love Niacin. Wish I would have get to know about it a looooooooong time ago. Thanks to whoever discovered this method, makes my life much easier to live.
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May, 2013 e-newsletter from NORD:
http://tinyurl.com/cwozpb5
In this issue, NORD Announces Funding for Seven New Research Grants, including POIS !
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please can anyone tell me how to cure the mental fog that occurs after arousal
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please can anyone tell me how to cure the mental fog that occurs after arousal
fenugreek + green tea improves my cognition during POIS. As does saw palmetto, huperzine, and ginkgo. More details can be found in my treatment summary linked to underneath this comment.
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please can anyone tell me how to cure the mental fog that occurs after arousal
fenugreek + green tea improves my cognition during POIS. As does saw palmetto, huperzine, and ginkgo. More details can be found in my treatment summary linked to underneath this comment.
Thanks for replying. I am in college. In order to study well , I have to find a way to reduce the mental fog that occurs after arousal. I accidentally found that by eating a multivitamin tablet the mental fog was reduced. One of its ingredients was nicotinamide 100 mg. Since niacin has anti inflammatory actions, I concluded that Nicotinamide 100 mg reduced the mental fog that occured after arousal. So i need nicotinamide tablets. I live in India. Here they don't sell nicotinamide tablets. Can anyone please tell me trustable websites , from where I can buy nicotinamide 100 mg tablets.
Have any one else tried niacinamide 100 mg for mental fog after arousal?
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Bulbo, I did a quick search at the place I usually buy my supplements from and I think I found what you want. Niacinamide and nicotinamide are the same thing. This is the smallest dose I could find it in at that site, but you could open the capsules and only take half that dose if you wanted.
http://www.swansonvitamins.com/swanson-premium-niacinamide-250-mg-250-caps
If Swanson doesn't ship to you then Amazon might. Amazon is another trusted site that I have used a lot in the past:
http://www.amazon.com/Source-Naturals-Niacinamide-100-tablets/dp/B0014H1L42/ref=sr_1_3?ie=UTF8&qid=1368723373&sr=8-3&keywords=niacinamide+100mg
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Bulbo, I did a quick search at the place I usually buy my supplements from and I think I found what you want. Niacinamide and nicotinamide are the same thing. This is the smallest dose I could find it in at that site, but you could open the capsules and only take half that dose if you wanted.
http://www.swansonvitamins.com/swanson-premium-niacinamide-250-mg-250-caps
If Swanson doesn't ship to you then Amazon might. Amazon is another trusted site that I have used a lot in the past:
http://www.amazon.com/Source-Naturals-Niacinamide-100-tablets/dp/B0014H1L42/ref=sr_1_3?ie=UTF8&qid=1368723373&sr=8-3&keywords=niacinamide+100mg
Unfortunately both of the websites wont ship to my place. Anyway thanks for helping.
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Will The Vitamin Shoppe send to you?
http://m.vitaminshoppe.com/store/en/vitamins_minerals/index.jsp
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Will The Vitamin Shoppe send to you?
http://m.vitaminshoppe.com/store/en/vitamins_minerals/index.jsp
Don't need the website anymore because yesterday I met my physician, he told me that vitamin C is better. I will try vitamin C to check whether it reduces the mental fog that occurs after arousal and I will inform you guys. If it doesn't work then I will have to opt for niacinamide. Are you very sure that taking nicotinic acid after food is not effective?
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From Stef/"nordnurse" today:
= = = = = = = = = = = = = = = = = = = = = = = =
"Guys,
You've received some NICE [grant] applications !!!!! :-)
(I can't say "great applications" because I can't judge them -- and haven't even had the time yet to check them for completeness before sending them to our MAC.)
Just thought you'd want to know. :-)
Yes -- you can post -- I can't give out specifics -- can't name names or advise exactly how many applications were received. But I can tell you -- -- this is GREAT for rare disease RFPs -- especially one like POIS where no one knows what the hell it is!!!!!
Later!"
= = = = = = = = = = = = = = = = = = = = = = = =
Yay!!!!!
Demo
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Hi Guys,
I have another question to think about... I've got a cold recently, just ordinary cold, nothing special, except pretty strong. You know that in this state you have pretty low motivation to do anything, have muscle weakness and your thoughts are unclear, yeah, similar to POIS but not quite :) In other situation I would just rest and take something for recover, but this time I wanted to become healthy, at least for a short time, I had one business to do that day. After trying several usual meds that are supposed to treat you from cold or flu and in pretty big doses the effect was close to zero. Sigh... My head just refused to think and I had muscle weakness with no regard to my efforts. The last thing I decided to try is... Niacin. I've taken usual Niacin dose I take before O (in injectable form) and a miracle - I felt myself 10 times better in a minute, my weakness gone and brain started to think clearly. I was able to complete the business challenge this day just fine.
We all know and not only POIS sufferers, all the people know that when you have a cold you also have weakness, low motivation and unclear thinking. Why does Niacin helps with this and with the same efficiency as with POIS?
Victor
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Hi Guys,
I have another question to think about... I've got a cold recently, just ordinary cold, nothing special, except pretty strong. You know that in this state you have pretty low motivation to do anything, have muscle weakness and your thoughts are unclear, yeah, similar to POIS but not quite :) In other situation I would just rest and take something for recover, but this time I wanted to become healthy, at least for a short time, I had one business to do that day. After trying several usual meds that are supposed to treat you from cold or flu and in pretty big doses the effect was close to zero. Sigh... My head just refused to think and I had muscle weakness with no regard to my efforts. The last thing I decided to try is... Niacin. I've taken usual Niacin dose I take before O (in injectable form) and a miracle - I felt myself 10 times better in a minute, my weakness gone and brain started to think clearly. I was able to complete the business challenge this day just fine.
We all know and not only POIS sufferers, all the people know that when you have a cold you also have weakness, low motivation and unclear thinking. Why does Niacin helps with this and with the same efficiency as with POIS?
Victor
WOW, great discovery... and equally good question.
What if the solultion to POIS was the solution to a common cold? Then we might have a lot more researchers interested in us!!
This time you didn't have to take it "before", as with POIS.
When taken (Niacin) during POIS, and not before, does it help POIS temporarily? I assume it only helped the cold temporarily as well too right?
I know if taken before a night out partying, it prevents the hang-over!
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Hi Guys,
I have another question to think about... I've got a cold recently, just ordinary cold, nothing special, except pretty strong. You know that in this state you have pretty low motivation to do anything, have muscle weakness and your thoughts are unclear, yeah, similar to POIS but not quite :) In other situation I would just rest and take something for recover, but this time I wanted to become healthy, at least for a short time, I had one business to do that day. After trying several usual meds that are supposed to treat you from cold or flu and in pretty big doses the effect was close to zero. Sigh... My head just refused to think and I had muscle weakness with no regard to my efforts. The last thing I decided to try is... Niacin. I've taken usual Niacin dose I take before O (in injectable form) and a miracle - I felt myself 10 times better in a minute, my weakness gone and brain started to think clearly. I was able to complete the business challenge this day just fine.
We all know and not only POIS sufferers, all the people know that when you have a cold you also have weakness, low motivation and unclear thinking. Why does Niacin helps with this and with the same efficiency as with POIS?
Victor
WOW, great discovery... and equally good question.
Yup, now I know how to have clear head when in cold if needed ;)
What if the solultion to POIS was the solution to a common cold? Then we might have a lot more researchers interested in us!!
Yes, exactly! I was surprised of the efficiency of Niacin to be able to clear cold symptomps so fast, though temporarily, but I think it stopped my cold to develop to strong forms, now I still have it, but in mild form...
This time you didn't have to take it "before", as with POIS.
Yup, thats right!
When taken (Niacin) during POIS, and not before, does it help POIS temporarily? I assume it only helped the cold temporarily as well too right?
When taken Niacin during POIS it doesn't help me temporarily. And with cold it does help temporarily, well I was able to think clearly and take physical load normally till the end of the day! The surprising fact was that Niacin immediately cleared main cold symptoms - physical and mental weakness, though temporarily but definitely strongly. Perhaps POIS is not so mystical phenomen if it has so many similarities with simple cold and the solution to POIS might be simple as well?
I know if taken before a night out partying, it prevents the hang-over!
Yup, I have learned this recommendation from you and use it from time to time to protect myself from hang-over :)
Victor
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FROM STEF/"nordnurse" Today
--------------------------------------------------------------------------------------------------
"I received an email from a researcher this past Friday -- asking if it was too late to apply for the POIS grant. He'd only just found out about the grant from a colleague, knew the deadline had passed, but was eager to apply. He wasn't on our researcher list. (Often -- this is exactly what happens. Researchers apply because they hear about the RFP from a colleague -- either they collaborate, or the first one isn't interested but is passing on the information.)
I advised him to send his application -- we'd get it to our MAC.
I'm not at all surprised at the response that the POIS grant has generated -- I had no doubts. There was never a worry about this (on my part) -- although I know that it probably had been a worry for you and the forum members.
POIS is such a vast unknown right now, and seems to involve multiple organ systems and multiple biological pathways. It's exactly the type of disorder that would interest a broad range of researchers. I'm betting that there is one, main cause -- leading to the various, miserable symptoms that some with POIS develop and some don't develop. But there are enough symptoms in common to definitely call it a "syndrome."
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what is the best place to share my symptoms... the place where my info will be taken into account and added to the database of facts? thank you...
Use this link, and post there, thanks:
http://poiscenter.com/forums/index.php?topic=81.0
This can help our POIS Research Grant reviewers and medical researchers with this information. Thanks.
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I can never remember how to do the search thing on the NS website - it never works well if you use the site itself. I think you have a way of doing it via google...could you remind me please? Sorry if it seems like I'm being lazy, I'm sure you've posted it on the NS site many times before. Then again...I'd have to do a search for it to find it!
SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 15,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
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Hello...
I gave up this [desensitization] treatment.
I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,
JP
JP, I am very sorry to hear this.
(http://poiscenter.com/forums/index.php?topic=11.msg9536#msg9536)
Interesting comments at above link by STEF/"nordnurse" and other forum members.
Please don't give up, JP: we *****WILL***** find Y O U R solution!!!
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Hello...
I gave up this treatment.
I found no advance in nearly 18 months. Nothing, absolutely nothing.
I won't go again just to pay for a treatment that just makes me feel sick, giving me a kind of "voluntary" POIS.
I'm tired... I'm sorry guys. This is not working for me and I shall try to live with this nightmare.
You can reach me in my e-mail i case you need information or something else.
Regards,
JP
[Stef's reply to JP below]
Hi JP and Everyone!
First of all -- to all of you -- you have received more than just a few applications for your POIS grant!!! I'm not in a position to judge them, and am not allowed to say exactly how many, from whom, etc. (This is the general request of all researchers applying for any grant, and has become a very a strong guideline at NORD). But -- these applications are SERIOUS!! That I can comfortably tell you without breaking any of the rules.
You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.
(But that's all I can say -- better quit while I'm ahead!)
Second -- JP, don't let this experience leave you feeling hopeless or down-trodden. Don't be sorry about anything! Yes, you are going to have to "live with this nightmare," a little longer. (It really is quite a nightmare!!!!)
But POIS will be understood -- and the answers/treatment will follow -- perhaps very quickly. (Honestly -- I just do not think you're going to be waiting long.)
Try to keep remembering -- at this moment, no one knows what POIS is! You're all on the way to finding out through your research grant, but right now -- there's no answer -- nothing!
Dr. Waldinger, who put POIS on the map, without question would agree. No one knows what POIS is.
(I know -- I sound like a broken record!)
Without ever having communicated with Dr. Waldinger -- he is a scientist, and would agree -- there has been no sound, scientific research. He has a hypothesis that POIS is an allergic condition -- which may or may not be on track.
(FYI -- I write this with complete, total respect for Dr. Waldinger and his team!)
Without funding, there's no research -- and with no research, there are no answers. It's just that simple.
And now you've got the funding for the research. :)
There has never before been funding for POIS research -- do you all realize this??!!!! So many of you men on this and the other forum donated what you could -- and with the constant encouragement of demografx and Daveman -- you all pulled together and did it! Demo and Daveman never gave up on encouraging everyone -- and they both walked the walk, also!
(I think demo has amassed a secret stash of animated gifs -- just for POIS donations!)
The question, "What is POIS" -- will likely be answered very soon.
So, JP -- and everyone -- stay strong -- and believe in your strength. Do not give up seeking treatments to tide you over until the true answers are discovered.
Please just be safe and careful while finding ways to get yourselves through this misery.
The answers are around the corner!
Stef
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this great news. can i post it on the other forum.
Sure! :)
CertainlyPOIS and others: feel free to post any POIS news anywhere! The more sufferers we reach the better it is for everyone.
Demo
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Hey guys as I said before I'm working on a site to help poisers especially newbie to quickly find remedies and more importantly how to use them.
I'm going quite slow, loads of other stuff to do and many many other. Including pois :)
http://www.helpmypois.info/ (http://www.helpmypois.info/)
The site will be online within a week or two I guess.
Bless
Sounds great. Take your time. I've actually put my work on my summary of the member case symptoms and treatments on hold. I have to focus on other things for a while. I'll give you the link to what I've done so far in case anyone is curious or wants to continue where I left off:
https://sites.google.com/site/poiscompilationsbyvm/
So far I'm just getting links to each member on nsf(since it's difficult to search for a specific member's profile/posts there) while adding at least a few of their symptoms or treatments. I've also added some members' quotes from poiscenter. Ultimately I want to have each member's symptoms and primary treatments listed all on one page so a simple ctrl+f search will enable you to find that data for any member you want. I have it on a separate site for now because if I tried to put it on poiscenter it'd be too large for one post, which would make it difficult to edit.
The other reason I'm doing this is that when I did the member experience compilations with fenugreek, b complex, and saw palmetto I realized the advanced google search is time consuming to use since it gives you a lot of links you don't need and on top of that it misses some data. For instance when I tried an advanced google search of poiscenter for "fenugreek" it completely missed a post by Prancer saying that fenugreek helped him even though he typed "fenugreek" in the post.
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I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.
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Could someone tell me how to set up my account so every new post on poiscenter will be sent to my email? When I tried clicking on the "subscribe" button at the poiscenter home page it just linked me to a bunch of html code it seemed. Actually that was when I used chrome. When I used firefox clicking on that gave me an option to subscribe to the feed using several options such as "Live Bookmarks" or "Microsoft Office Outlook", but I don't think I ever use either of those.
If I subscribe using the "Google" option will it send the feed to my gmail?
I tried subscribing using the "Google" option and now it's telling me I have to make a homepage with "iGoogle" lol. I'm so confused.
Edit- I tried subscribing using Internet Explorer and it seemed to work, but it looks like it has only reported my last 5 posts so far.
Edit2- I've been looking into how to get an RSS feed from here using chrome(my preferred browser), but it seems chrome is just horrible when it comes to RSS feeds in general. If anyone knows how I could set it up in chrome or how I could have the feed sent to my gmail account that would be great.
Edit3- I've subscribed to "FeedReader Online" and "Bloglines" and was able to subscribe to the RSS feed from those two sites, which is working in chrome. Well this has been an adventure.
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Hey I always check on [recent posts] at the bottom of the home page. This way I don`t miss anything.
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I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.
Ditto!! :) :)
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I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.
You're welcome, Vincent M and everyone.
There really won't be much -- if anything -- to advise you all about in the next several months. NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals. Then, it's another waiting game -- the final determinations are made in late November/early December.
So -- if you don't hear more from me about your grant -- don't think it's bad news!!! No news is just no news!
Stef
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I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.
You're welcome, Vincent M and everyone.
There really won't be much -- if anything -- to advise you all about in the next several months. NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals. Then, it's another waiting game -- the final determinations are made in late November/early December.
So -- if you don't hear more from me about your grant -- don't think it's bad news!!! No news is just no news!
Stef
Hey Stef!
Do you mean that the research will actually start on december? How long do you think according to your previous experience we will have to wait before any result? 2014? 2015?
Thanks
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Hey I always check on [recent posts] at the bottom of the home page. This way I don`t miss anything.
The problem with the recent posts section is that it only records the last ten pages of posts, which is sometimes filled within a couple weeks so if I don't visit for a couple weeks then I have to go clicking through every single thread on the forum which is time consuming.
Since I have set up 3 different places to receive the RSS feed from here I was able to compare them today. So far bloglines.com is the only setup that has worked to reliably receive all the posts from here, but it's still only been a couple of days so it's not fully tested.
Feedreader.com is just plain glitchy and is now not even able to load my feed from poiscenter. Actually I tried logging out and back in and now it is loading the feed, but it has missed a lot of posts in the past couple days.
While the feed reader on internet explorer is easy to access since it's integrated into the navigation bar of the browser it is not feasible, because it has missed a lot of the posts from this site that were posted yesterday and today.
I couldn't figure out how to set up the feed using mozilla firefox.
Does anyone know how to do this or am I the first one who has tried to figure it out? I keep thinking there must be some way to convert the "recent posts" section into a big thread that contains all of the posts ever posted on this site or even maybe just increase the number of pages recorded from 10 to about 50 or 100 pages so the members who've missed a few months of posts can easily get caught up when they return.
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Hey I always check on [recent posts] at the bottom of the home page. This way I don`t miss anything.
The problem with the recent posts section is that it only records the last ten pages of posts, which is sometimes filled within a couple weeks so if I don't visit for a couple weeks then I have to go clicking through every single thread on the forum which is time consuming.
Since I have set up 3 different places to receive the RSS feed from here I was able to compare them today. So far bloglines.com is the only setup that has worked to reliably receive all the posts from here, but it's still only been a couple of days so it's not fully tested.
Feedreader.com is just plain glitchy and is now not even able to load my feed from poiscenter. Actually I tried logging out and back in and now it is loading the feed, but it has missed a lot of posts in the past couple days.
While the feed reader on internet explorer is easy to access since it's integrated into the navigation bar of the browser it is not feasible, because it has missed a lot of the posts from this site that were posted yesterday and today.
I couldn't figure out how to set up the feed using mozilla firefox.
Does anyone know how to do this or am I the first one who has tried to figure it out? I keep thinking there must be some way to convert the "recent posts" section into a big thread that contains all of the posts ever posted on this site or even maybe just increase the number of pages recorded from 10 to about 50 or 100 pages so the members who've missed a few months of posts can easily get caught up when they return.
WOW, thanks for the effort. I see every once in a while that the feed seems to miss a thing or two, but maybe I'm not sure how much.
I use the RSS configuration on Outlook Express. I think other mail clients have RSS feed management. It seems to work fairly well, but I honestly couldn't say how much I might be missing.
Another is google reader.
In any case, the RSS feed IS better than the "Last Posts Since last visit" link. I don't know why, but this does seem to miss quite a few post.
Thanks for investigating and reporting.
Good work you do for the cause of POIS.
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We should have a button to check all the post .... So we should not miss a single post pls advice ???
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I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.
You're welcome, Vincent M and everyone.
There really won't be much -- if anything -- to advise you all about in the next several months. NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals. Then, it's another waiting game -- the final determinations are made in late November/early December.
So -- if you don't hear more from me about your grant -- don't think it's bad news!!! No news is just no news!
Stef
When will the actual research start?
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Everybody, we can help out the research process by going here
http://tinyurl.com/k9noay9
and telling the researchers what POIS is.
What has helped you.
What makes it worse.
This is our opportunity to have a voice.
[
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The answers [to POIS] are around the corner!
Stef
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WOW, thanks for the effort. I see every once in a while that the feed seems to miss a thing or two, but maybe I'm not sure how much.
I use the RSS configuration on Outlook Express. I think other mail clients have RSS feed management. It seems to work fairly well, but I honestly couldn't say how much I might be missing.
Another is google reader.
In any case, the RSS feed IS better than the "Last Posts Since last visit" link. I don't know why, but this does seem to miss quite a few post.
Thanks for investigating and reporting.
Good work you do for the cause of POIS.
The "Recent Posts" link at the bottom of poiscenter has never missed a post to my knowledge. Bloglines.com has failed the test as it has missed an entire page of posts that I just read over in the recent posts section. I didn't try Google Reader, because it is going to be shut down on July 1 of this year. It's looking like when I return I'll be forced to click through every single thread on this forum in order to catch up. Daveman, is there really no way to configure the "Recent Posts" section to record more than 10 pages of posts? Could you look into this?
edit- Figured out how to set up microsoft outlook. The password required was just for my email account that I already previously had, but for some reason underneath the box it said it needed a password given to me by my isp, which confused me. I'll test outlook in the upcoming days.
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We should have a button to check all the post .... So we should not miss a single post pls advice ???
I agree, but it seems as of now the only way to ensure you've read every post is to either regularly read the "Recent Posts" section or click through every single thread on the entire forum.
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I'm liking the updates on the research grant applications that Stef is giving us. It's inspirational. Thanks, Stef.
You're welcome, Vincent M and everyone.
There really won't be much -- if anything -- to advise you all about in the next several months. NORD's MAC will review the initial applications in early August, weed out those applications that don't have scientific merit and/or very good potential, and then decide who to invite back to submit full proposals. Then, it's another waiting game -- the final determinations are made in late November/early December.
So -- if you don't hear more from me about your grant -- don't think it's bad news!!! No news is just no news!
Stef
Hey Stef!
Do you mean that the research will actually start on december? How long do you think according to your previous experience we will have to wait before any result? 2014? 2015?
Thanks
Hi poiseidon!
The award recipient of your grant won't be determined until late November or early December, 2013. It's ~ a 10-month process.
Then once the researcher is chosen, he/she needs to get all of the required documents to us -- these include copies of the medical institution's Internal Review Board approval (called an "Ethics Committee" outside the US) -- which insures the protection and rights of patients involved in a study -- and also a copy of the patient consent form. Depending on the institution, this can be accomplished very quickly -- or a few months may pass.
The POIS study will be in progress for one year. So -- the grant may not be completed until early 2015, and therefore, there may be no strong reporting of research findings until then. But the researcher(s) must provide interim progress reports to NORD's MAC (one at six months, then one at the end of the year). There is a portion that they must include which we'll be able to provide to the forum -- it's specifically meant to keep those who donated the funds up-to-date. We will definitely post that on your forum page.
But -- that information will be of a general nature. I can almost guarantee this will be the case until their manuscript is published.
FYI -- depending on the researcher who receives your grant -- your forum members may be able to establish an independent relationship with him/her. It happens frequently, and simply depends on the personality of the researcher. If that happens, you will probably be able to get more frequent "informal" updates.
For the POIS grant, I can't envision the study not involving humans (as opposed to lab rats) - so you will probably be able to establish a relationship -- he/she will likely be contacting some or all of you for samples of blood, semen, or to undergo x-rays (paid for by the grant).
I wish it could go faster -- but research is often a slow process. If it's rushed, it's not worth anything.
Stef
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Hey guys. I have not been on here in a while but I am in a tough spot right now.
I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.
Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.
I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.
Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.
I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.
I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.
Best,
Jon.
-
Just a quick though : I've been recently convinced that the mental/psychological status is an important component in all that. It's like being stressed, negative, affraid, etc has a kind of retro feed back loop in the body and cause more physical unbalances ; emotions are hormons and neurotransmittors(we don't know how it works but it is 100% sure).
So my advice is try to work on your mental by seing somebody and working in your emotions (not necessarly a shrink, i found a doc very recently who have a very interesting approach in all that, you can do relaxation, etc).
Regarding the physiologic, have you tried to look at free copper ? The problem of elocution and facial expression are quite common with copper poisoning ; mineral unbalance are my new area of interest ; really not sure about that but it's quite promising. My belief is there is something between no problem and wilson disease ;
Good luck and keep faith
-
Microsoft Outlook has missed roughly 50% of the posts since I set it up. If I start from about 6 hrs after I set it up and start reading at Daveman's last post in response to LAPOISSE about NSAIDs and then stop reading at my last post then it has delivered 7 out 13 total posts. Only slightly better than 50%.
On the other hand bloglines.com has delivered 100% of the posts in that particular time frame, but it missed posts earlier.
It could be that these reader set ups take more than a few days to start functioning properly, but I doubt that's the case.
-
Hey guys. I have not been on here in a while but I am in a tough spot right now.
I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.
Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.
I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.
Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.
I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.
I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.
Best,
Jon.
Jon am in a similar position as you in-terms of the of the cognitive problems. I never fully recover cognitively anymore, before my recoveries used to feeell majestic i felt on top of the world now even after three weeks i dont feel there and when i hang out with people for long periods they start to notice. That part is really starting to hurt my confidence and am always on guard not to be referred to as been dumb. ( i have got several hints of that from people, i just kind act like i didnt notice or hear). Caffine/ 5hour energy do not give any kind of boost anymore like they used to.
Physically most of my problems have improved even if i do multiple orgasms as long as i get good night rest sleep i feel better. I believe my physical problems has improved because of vit D. When i dont use it my physical problem ( mostly low energy) come back. You should probably check your vit d and see if its low.
Am not even trying to improve symptoms during pois anymore am trying to get rid of constant pois. i feel if i can rid of constant pois i can once again have the motivation to fight frequent orgasm.
-
Microsoft Outlook has missed roughly 50% of the posts since I set it up. If I start from about 6 hrs after I set it up and start reading at Daveman's last post in response to LAPOISSE about NSAIDs and then stop reading at my last post then it has delivered 7 out 13 total posts. Only slightly better than 50%.
On the other hand bloglines.com has delivered 100% of the posts in that particular time frame, but it missed posts earlier.
It could be that these reader set ups take more than a few days to start functioning properly, but I doubt that's the case.
WOW, I didn't think it was that much!! Hope I'm not missing too many SPAMs... (to delete and report) Don't forget, if you see SPAMs, everybody, click the "report to moderator button" below the post.
-
Hey guys. I have not been on here in a while but I am in a tough spot right now.
I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.
Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.
I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.
Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.
I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.
I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.
Best,
Jon.
Jon am in a similar position as you in-terms of the of the cognitive problems. I never fully recover cognitively anymore, before my recoveries used to feeell majestic i felt on top of the world now even after three weeks i dont feel there and when i hang out with people for long periods they start to notice. That part is really starting to hurt my confidence and am always on guard not to be referred to as been dumb. ( i have got several hints of that from people, i just kind act like i didnt notice or hear). Caffine/ 5hour energy do not give any kind of boost anymore like they used to.
Physically most of my problems have improved even if i do multiple orgasms as long as i get good night rest sleep i feel better. I believe my physical problems has improved because of vit D. When i dont use it my physical problem ( mostly low energy) come back. You should probably check your vit d and see if its low.
Am not even trying to improve symptoms during pois anymore am trying to get rid of constant pois. i feel if i can rid of constant pois i can once again have the motivation to fight frequent orgasm.
Permanent damage? This is VERY bad.
I just found out that that pharmacological agonists of 5-hydroxytryptamine2A (5-HT2A)serotonin receptors can block the pro-inflammatory effects of Tumor Necrosis Factor (TNF) on smooth muscle vascular cells.5-HT2A receptor is involved in cognition. TNF is supposed to promote inflammatory reactions in Crohns disease. This is interesting because serotonin appears to be pro-inflammatory, as a number of studies have shown depletion of serotonin within the CNS acts to reduce animal models of inflammation such as adjuvant-induced arthritis. However it suppresses multiple responses to TNF. Testing to find TNF active have failed, but I never had orgasms before testing. My Crohn diagnostic is not 100% accurate because of lack of acces to the small intestine, and gluten free diet helped me more than drugs, but any complex protein is not recommended for any IBD because it can cause issues on a damaged intestinal lining. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861806/
Acetylcholine excess includes all POIS symptoms, brain fog, nightmares, diarrhea, flu like symptoms, and maybe decreased levels in the brain of the neurotransmitters: serotonin, norepinephrine, and dopamine. Maybe POIS disrupts Serotonin.
TNF can cause premanent damage , read this http://www.ncbi.nlm.nih.gov/pubmed/21728035
Also, modification of the noradrenergic signaling system occurs in some neurodiseases http://www.ncbi.nlm.nih.gov/pubmed/12176079
If I fail to control nocturnal emissions, those damn wet NIGHTMARES I am doomed if my theory is correct.
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Hey guys. Of two things I'm sure for those who experience POIS even without orgasm since I experienced it myself. Overthinking makes it worse. I'm sure that under a very small extent it is in our head. I do feel worse since I know POIS exist. I always knew there was a correlation between my well being and abstinence. But nothing more than that. But last horrible winter in Europe worsened my physical symptoms, making my sinus really bad. So I Google it. This is how I knew about this fucking POIS.
Now abstinence is not the key. Unless you are fully committed and concentrated to completely eliminate any sexual thought and this is achievable with meditation or other techniques that involve the control of the mind. I made it once. I completely deconstructed sex from my mind. Ironically during this period of feeling great (talking of some years ago) I dated many many girls which wasn't really something I was used to. What amazed me the most was the fact that they were attracted to me in the first place and without any effort. Even walking on the street their look was different. Long story short I ended up with this amazing girl. But when we decided to do it, it seemed everything was shut down. Weeks of MENTAL and physical abstinence made me completely uninterested towards sex. It took me months to make it work again. I believe for some of us this is better than POIS. But at the time I still was a very young monkey craving for experiences so I lived it quite badly because in one way or another I couldn't find in sex the great experience everybody had. Either for feeling like shit if I was doing it or not being able to do it because of prolonged abstinence.
Anyways...
Don't expect to feel better just not Oing because what I do feel is that many of us misunderstand POIS symptoms with other ones. One for all depression. Which is linked to POIS but just because we do tend to overthink about it. There are so many people with wasted lives. 99.9999% don't have POIS.
We are made to cum as much as we are made to eat or to breath. Theres no point really to stay horny all day and feeling bad anyway. We are made to cum so we have to cum. No matter what.
To feel better we can't just wait in bed until we feel great. I'm sorry but this isn't going to happen.
Gotta work it in your head. Abstinence and being horny don't work well. This way you put your body under stress giving you symptoms that you relate to POIS but might not..
I hope it didn't sound arrogant.
Bless on all of you
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"Fight the immediate reaction of some doctors: just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
This is the only approach that has worked for me with ignorant, arrogant, or lazy doctors!
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
Please see our Welcome Page for more specific info in dealing with doctors. YOUR WAY!
http://tinyurl.com/lwwns6z
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FornicationDENIED,
That is very interesting. You seem to know a good deal about the effects neurotransmitters and such.
I certainly hope that the damage isn't permanent. Its one thing to not be thinning sharply or correctly, but it definitely worries me to think that I may have lost cognitive potential that I cannot recover.
All I can say is that I'm 26 and I do not have the energy to do more than 1 or 2 activities all day. I find myself taking half of the day to fully wake up and afterwards I find myself nodding off. I've tried everything. I am at the point where I am just struggling to live everyday. I feel like I'm in a bad spot guys. I see everything declining more and more. I don't know what to do.
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Jon, I felt like you, decades ago. I fought my way to here today, and now no more decades of waiting. As nordnurse says, "the answers to POIS are now around the corner", especially with our $31,000 grant that has already attracted some top flight world class medical researchers finally taking a hard, serious look at POIS!
Don't give up!
-
Microsoft Outlook has missed roughly 50% of the posts since I set it up. If I start from about 6 hrs after I set it up and start reading at Daveman's last post in response to LAPOISSE about NSAIDs and then stop reading at my last post then it has delivered 7 out 13 total posts. Only slightly better than 50%.
On the other hand bloglines.com has delivered 100% of the posts in that particular time frame, but it missed posts earlier.
It could be that these reader set ups take more than a few days to start functioning properly, but I doubt that's the case.
WOW, I didn't think it was that much!! Hope I'm not missing too many SPAMs... (to delete and report) Don't forget, if you see SPAMs, everybody, click the "report to moderator button" below the post.
I tried to register in bloglines.com, but every username that I put they said was taken. Something wrong, because it didn't matter WHAT I put!
-
Hey guys. I have not been on here in a while but I am in a tough spot right now.
I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.
Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.
I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.
Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.
I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.
I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.
Best,
Jon.
Hi Jon,
I just read your post.
I wanted to mention an observation to you, not only to try to allay some of your fears, but because it really stood out for me while reading your post.
Despite the fact that your symptoms are very strong, that you've been feeling miserable and things seem to be getting worse, that you feel like you're on "a steady decline" and that it took you days to write the post -- your writing is absolutely clear! There's no hint of rambling, off-kilter or illogical thinking. In fact, your writing is eloquent -- you expressed your thoughts beautifully!
Please try to remember this when you become really worried about this sense of a steady decline. You may be feeling worse over time (for now), but your post reflects someone with absolutely clear thinking! Clarity of thought and ability to express oneself the way you did in your post are signs that you are absolutely there and present.
It doesn't matter that it took you days to write that post (which was a very concise history!). Many people without POIS -- without any illness -- cannot express themselves nearly as well as you just did.
Remember what demo wrote -- he, too, felt like you do now. I remember him mentioning that he had extreme fatigue -- this was a stand-out symptom if I recall correctly. But he was eventually able to find some medication treatments that tremendously eased the symptoms of POIS.
You may not find those treatments on your own -- but research will do it for you.
At this point, it's inconsequential that the topnotch, excellent docs in Massachusetts found "nothing" to explain your symptoms. They did not know what to look for.
Broken record about to start playing... No one knows what POIS is! There has been no serious, solid research yet.
In the meantime, please remember -- your thinking is clear -- 100% clear -- despite feeling awful. This agonizing sense of decline that you've described is temporary -- don't doubt it for a moment.
Stef
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Hey demo!
A quick update about my pursuit of endocrinologists. I contacted 15 "respected" and private ($$$$) endos.
Here's the result: 9 didn't even reply, 5 thought I was crazy and the last one was really interested in the whole thing.
He was really chilling and easygoing, I was his last patient and we talked for a couple of hours. I told him everything, about Waldinger, about the forum, about your successfull therapy. And then he said "THE Internet is a great invention" (he was quite old) when I told about the research grant.
He was willing to help but he made his point saying that going through TRT at my age (26) could make more damage than relief in the long run. Especially with this research that may give more answers in a year or two.
He basically told me to be to wait. "You waited 26 years now wait for one more and don't make stupid things in the meanwhile".
So I think I might listen to him.
poiseidon, yes, at age 26, TRT could conceivably mean HAVING NO CHILDREN if you do TRT.
At your age (and this close to NORD answers)...I am HAPPY that you are listening to this endocrinologist!
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I changed my profile here @ POIScenter:
I simply added the word "nearly" (see profile below, under each of my posts)...I'm *not* always 100% POIS-free with my treatment.
1. I am mostly retired, so I have FAR less daily stress than before.
I don't know how well I would do with POIS + daily occupational, work-people-related stress, as before.
2. I still cannot explain why I'm "POIS-free" sometimes, and at other times (especially stressful), some POIS (minor but still ugly POIS!) still comes back, even with my adding Levitra Rx + other meds to the mix, including controversial mood meds.
3. I am very grateful for the forum - and others - encouraging me strongly to see a [POIS-sympathetic] endocrinologist in 2008. The forum consensus at the time was that "POIS is a hormonal imbalance". So I followed. And got LUCKY!
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[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]
Dear Prof Waldinger,
It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which said that you refused our work that was accepted (with reservation) by the other 3 referees. We think and feel that it was not fair enough.
Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to what you think that; the idea of atopy may be a precipitating factor for POIS is yours and not ours ?!. We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive and body pains he feels post orgasmic; his atopy flares up eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals, by the full length paper to ask you your experience as the only reporter of this syndrome - at that time - but sadly enough we didn't receive any reply. Please, return back to your archive. Moreover; in 2010; we shared the ISSM forum by this case report also before you mention at all any relation of POIS to atopy - you mentioned it only in your publication at 2011 - and many of our colleagues who are ISSM members shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK , and published in its proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings but the references mentioned and our patient didn?t get any benefit from trying these drugs; please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard? is it enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know - and it is scientifically proved - that this test has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our immune system. Immunologic tolerance to it is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex. It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that; allergy to the patient's own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true - POIS patients will be mostly infertile as well. So; as you depended only upon the unreliable skin prick test and for the afore mentioned scientific facts, we - and we think that we will be shared by anyone who is interested in andrology - think that; your conclusion is not right and we can't scientifically accept that the cause of POIS is allergy to own semen.
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!. Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit if any is not more than placebo.
Thanks,
Prof. Dr Abdalla attia & Dr Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt
= = = = = = = = = = = = = = = = = = = = = = = = =
yasienhossam, thank you for your excellent questioning!
I hope Waldinger will respond.
Best regards,
Demo
ps - contact info
Prof. dr. Marcel D. Waldinger
dr.m.d.waldinger@gmail.com
-
Hey guys. I have not been on here in a while but I am in a tough spot right now.
I'm not new to POIS. I've had it since I was 16, I'm now 26. Long story short, One day at the moment of climax when I was 16 it felt like an engine shut off my in my head. It wasn't the regular feeling I would always get after orgasm, Instead I felt dull and unenergized. From there, I was never the same. Since that day that 'engine' has never been turned back on. I remember wondering why I no longer felt the natural high of life or sense of well being I had felt before. I then developed a POIS on top of that, But not a regular POIS. My POIS includes a 3-5 day recovery period, but unlike many I have recovered less and less overtime. In other words my symptoms are constant, and if I do have an orgasm my body will not replenish my health the way it did even last time. Essentially I recover less each time. If I have 2 orgasms in a day my body cannot handle it, All my symptoms will take a big dip and my whole body chemistry will be changed. It has been debilitating. I've had to hold off for months at a time, And even in doing this my constant symptoms have not disappeared. 6 years ago I thought it couldn't get worse, 3 Years ago I thought the same, And today I am in fear because my symptoms have taken over my life.
Initially my symptoms were many and familiar to this forum .. Cognitive included trouble thinking, alertness issues, slowed reactions, difficulty feeling emotions. Physically my symptoms started with hot flashes, fatigue, muscle tremors, weakness, poor libido, groin and low abdominal pain following orgasms, and sensitive eyes among others.
I had to withdraw from school and work for a couple of years. I got all sorts of testing, tons of bloodworm, MRIs, Cat Scans. I've been to all sorts of doctors.... neurologists, endocrinologists, psychiatrists, urologists, cognitive therapists. Tons of visits to the top hospitals in Massachusetts. Standing up to many doctors as they told me its all in my head, and explained myself to many more as my testing came up normal. The frustration repeatedly finding nothing conclusive cannot be explained.
Eventually I found this forum I'd say around 2 years ago and I am very thankful for it. I initially found mild relief with fenugreek and garlic, but I still couldn't function. I then found niacin and felt about 40% better after orgasm. After 8 years into my issue, fellow member Kurtosis suggested a treatment regimen that I found great relief with. He told me to take spirulina, chlorella, fish oil, and vitamin C. So I was taking niacin before orgasm then all these supplements immediately after orgasm and also in the coming days. At first I felt strong, my weakness disappeared, I could think straight, and even my grain pains disappeared. I almost felt high in that I could work all day and I was very assertive. It was like things that seemed unbearable before became pleasurable and I couldn't find enough to accomplish. This went on for months. After a few months I started noticing myself dipping back down with each orgasm little by little.
I have since continued to dip and my symptoms are worse than ever. It is very difficult for me to open my eyes during the day, my cognitive symptoms are almost like that of a schizophrenic. I have trouble speaking and I slur my words, Trouble picking up social stimuli, I cannot always control my facial expression or voice, my sleeping is off, my emotions are very mild, periods of standing blankness, and I have trouble thinking. Physically all my symptoms have returned plus I have digestion issues, weakness, and others. These days even if I'm abstaining I still feel like I'm getting worse.
I've recently had trouble dealing with these as simple as the elements. Sun, wind, rain, etc. are harder now for my body to deal with. I feel that I'm mentally losing my sense of urgency as it took me days to write this. I sometimes wonder if taking all those supplements directly after orgasm hurt me more than helped me. Basically, It feels like my core energy that at one time made these things healthy was sucked out of my during that first incident. It seems that over time my energy is getting lower and lower and I really fear for what might happen to me. I am on a steady decline and I don't know what will happen to me if I get much worse. I would appreciate any input as I have a lot of respect for people in this forum.
Best,
Jon.
Hi Jon,
I just read your post.
I wanted to mention an observation to you, not only to try to allay some of your fears, but because it really stood our for me while reading your post.
Despite the fact that your symptoms are very strong, that you've been feeling miserable and things seem to be getting worse, that you feel like you're on "a steady decline" and that it took you days to write the post -- your writing is absolutely clear! There's no hint of rambling, off-kilter or illogical thinking. In fact, your writing is eloquent -- you expressed your thoughts beautifully!
Please try to remember this when you become really worried about this sense of a steady decline. You may be feeling worse over time (for now), but your post reflects someone with absolutely clear thinking! Clarity of thought and ability to express oneself the way you did in your post are signs that you are absolutely there and present.
It doesn't matter that it took you days to write that post (which was a very concise history!). Many people without POIS -- without any illness -- cannot express themselves nearly as well as you just did.
Remember what demo wrote -- he, too, felt like you do now. I remember him mentioning that he had extreme fatigue -- this was a stand-out symptom if I recall correctly. But he was eventually able to find some medication treatments that tremendously eased the symptoms of POIS.
You may not find those treatments on your own -- but research will do it for you.
At this point, it's inconsequential that the topnotch, excellent docs in Massachusetts found "nothing" to explain your symptoms. They did not know what to look for.
Broken record about to start playing... No one knows what POIS is! There has been no serious, solid research yet.
In the meantime, please remember -- your thinking is clear -- 100% clear -- despite feeling awful. This agonizing sense of decline that you've described is temporary -- don't doubt it for a moment.
Stef
Stef, you have brought such incredibly great Hope to this Forum.
THANK YOU! :)
-
[Posted by new forum member, "yasienhossam", representing medical researchers who sign this posted letter. Posted Letter addressed to Dr. Marcel Waldinger]
Dear Prof Waldinger,
It has given us great honor when the editors of F1000 Research had told us that you will be one of the reviewers of our paper but we were astonished when we read your response which said that you refused our work that was accepted (with reservation) by the other 3 referees. We think and feel that it was not fair enough.
Actually we respect your own opinion but we are surprised!; how it comes to reject a case report of POIS (the rare disease) and say that you encourage publication in that topic?!. Is it related to what you think that; the idea of atopy may be a precipitating factor for POIS is yours and not ours ?!. We think that this is not true. This is because we discovered our case by the end of 2009 and at that time you have only one publication in 2002- in which you didn't refer at all to atopy. We have found that our patient is atopic and in addition to the cognitive and body pains he feels post orgasmic; his atopy flares up eye irritation with severe body itching. By December 2009 and after preparing the report and before its publication we sent you 3 e-mails with about one week intervals, by the full length paper to ask you your experience as the only reporter of this syndrome - at that time - but sadly enough we didn't receive any reply. Please, return back to your archive. Moreover; in 2010; we shared the ISSM forum by this case report also before you mention at all any relation of POIS to atopy - you mentioned it only in your publication at 2011 - and many of our colleagues who are ISSM members shared by comments and discussion ; we remember that one of them was Prof. David Goldmeier. Please go back to the ISSM Forum 2010. This case report was presented as a poster in the 20th World Congress for Sexual Health, held in June 12- 16, 2011, Glasgow, UK , and published in its proceedings . For the before mentioned reasons we think that; it is ours and not yours that; atopy may be a precipitating factor for POIS and we must ask about and check for it in any of POIS cases.
Our Dear Dr Waldinger, in your reply one of the reasons for which you refused our case report -as you stated - is that we mentioned that; NSAIDs, tramadol and SSRIs may help and you didn't find any response to these drugs. We want to remind you that this is not our findings but the references mentioned and our patient didn?t get any benefit from trying these drugs; please you can read our case report again !.
What we feel very important and we want to discuss is the skin prick test as a diagnostic test for allergy. Do you think that it is a reliable one in this regard? is it enough to reach the final conclusion that POIS patients are allergic to their own semen and that this is the cause of POIS?. Basically; we know - and it is scientifically proved - that this test has many false positive and negative results. Moreover; we as andrologists ; knew - and it is scientifically proved as well that; our semen is foreign for our body and our immune system. Immunologic tolerance to it is not present as it formed only after our puberty where the immune system didn't identify it in utero. For this reason our God totally separated it from our immune system by what is well known now as the very competent Blood Testis barrier that is formed by the highly efficient Sertoli Sertoli cell junctional complex. It is not - as you mentioned on you tube - a hypothetical membrane. Only in certain known pathologic conditions this barrier may be broken. If occurred we form auto-antibodies against our semen. So; when we inject our own semen intradermaly we will react positively to it as it is a foreign antigen for us. Please try to apply this very simple prick test for you and your assistants using your own semen; mostly you will get a positive reaction without having POIS. Moreover; if we suppose that; allergy to the patient's own semen is the cause of POIS; it was mandatory to measure serum and seminal plasma anti-sperm antibodies; IgA, IgG and IgM, to do immuno bead and MAR testing and to report on the patient's seminogram changes as in such cases ? if this is true - POIS patients will be mostly infertile as well. So; as you depended only upon the unreliable skin prick test and for the afore mentioned scientific facts, we - and we think that we will be shared by anyone who is interested in andrology - think that; your conclusion is not right and we can't scientifically accept that the cause of POIS is allergy to own semen.
Dear Prof, we are surprised; how it comes that; only from two patients ? without placebo control ? wants us to accept that; hyposensitization using the patient's own semen is the treatment of POIS!. Although your last two papers are published in a highly respectable journal we are sorry to say that; this is not right from the scientific facts mentioned above and they are only two patients. We think that; any benefit if any is not more than placebo.
Thanks,
Prof. Dr Abdalla attia & Dr Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt
= = = = = = = = = = = = = = = = = = = = = = = = =
yasienhossam, thank you for your excellent questioning!
I hope Waldinger will respond.
Best regards,
Demo
ps - contact info
Prof. dr. Marcel D. Waldinger
dr.m.d.waldinger@gmail.com
Dear Drs. Attia and Yasein,
I was just advised by demografx of your post.
Please apply for the POIS grant!!! We'll give you an extension on the deadline.
Here's a link to the application: http://tinyurl.com/bwhbn5k (http://tinyurl.com/bwhbn5k)
FYI, we did send Dr. Attia the POIS RFP when it was first posted, because we had seen Dr. Attia's poster presentation from a conference that took place about one or two years ago. Perhaps we had an incorrect email address for Dr. Attia.
Stefanie Putkowski, RN
NORD Research Program Administrator
research@rarediseases.org
-
This is the article that was NOT approved [it was rejected by Waldinger, according to the letter from Egypt:
http://f1000research.com/articles/2-113/v1
My opinion: it was a hurtful, unnecessary, competitive slam.
-
Stef,
Thank you for your optimism for people in this group. It is truly selfless of you to comfort people who are going through POIS. I'm sure you have given hope to many people.
I do understand that I my writing can be understood, and that is a good thing. However, it doesn't change my status and the fact that I am getting worse. I do agree that research might give us some answers, And hopefully even some answers for a case like mine which is a little more on the severe side. This is whats happening. I will fight for as long as I can function. I still have hope even in the spot that I am in.
Thank you again for your generosity to everyone,
Jon.
-
We were astonished when we read [Dr. Waldinger's] response which said that you [Dr. Waldinger] refused our work that was accepted (with reservation) by the other 3 referees.
Some of us were not surprised: you point out scientifically what many of us have been questioning extensively about this so-called "desensitization" for a very, very long time. Thank you.
By December 2009 and after preparing the report and before its publication we sent you [Dr Waldinger] 3 e-mails with about one week intervals, by the full length paper to ask you your experience as the only reporter of this syndrome - at that time - but sadly enough we didn't receive any reply.
This has been the experience of many people here, including mine: nonresponsiveness.
-
If anyone wishes the 2 doctors to apply for our POIS Grant, please write and encourage them to submit a simple request for an application extension.
Stef offered this to us (see her post below).
EMAIL THEM AT:
yasienhossam@yahoo.com
================================================
YOU CAN SIMPLY COPY AND PASTE THIS IN YOUR EMAIL:
"Dear Drs. Attia and Yasien,
Please apply for the POIS grant! We'll give you an extension on the deadline.
Here's a link to the application: http://tinyurl.com/bwhbn5k
Sincerely,
POIScenter forum member ____________________ "
================================================
Prof. Dr Abdalla Attia & Dr Hossam Yasien
Andrology Unit,
Faculty of Medicine,
Minoufiya University,
Egypt
Many thanks!
Demo
Dear Drs. Attia and Yasien,
I was just advised by demografx of your post.
Please apply for the POIS grant!!! We'll give you an extension on the deadline.
Here's a link to the application: http://tinyurl.com/bwhbn5k (http://tinyurl.com/bwhbn5k)
FYI, we did send Dr. Attia the POIS RFP when it was first posted, because we had seen Dr. Attia's poster presentation from a conference that took place about one or two years ago. Perhaps we had an incorrect email address for Dr. Attia.
Stefanie Putkowski, RN
NORD Research Program Administrator
research@rarediseases.org
-
What about Dr. Salamanca of Madrid?
I think he's working on it too "with fairly good results"...
-
What about Dr. Salamanca of Madrid?
I think he's working on it too "with fairly good results"...
I think that Dr Salamanca was on NORD's list of researchers, in which case he received the RFP.
If not, someone with Dr Salamanca's email should send him a request to have a Grant extension (to Stefanie Putkowski, Grant Administrator ( rn@raredisorders.org ), and please include our link to "POIS RFP, 2013":
http://tinyurl.com/bwhbn5k
Remember, that even if Dr Salamanca received the POIS RFP already, it can't hurt to send him another RFP. It shows interest on OUR part in him. Which in turn, may sway him to go to the effort of extending, then submitting a full application -- quickly.
-
"Successful remedies" : http://www.helpmypois.info/
I like the 'Coming Soon' graphic layout of your "Successful Remedies".
Intrigued. Looking forward to seeing it when it's ready.
-
Submitted by one of our Forum members :)
(http://i858.photobucket.com/albums/ab143/demografx/C795CEDA-09CE-40C4-B881-2C986BC74814-700-00000040E95F7856.jpg)
-
Update on my feed reader tests: During the past 7 days there were about 100 posts posted at poiscenter and this completely filled the "recent posts" section as it records 10 posts on every page and consists of 10 pages total.
Microsoft Office Outlook 2007: Only sent 5 posts during this time frame. It missed 95% of the total 100 posts over the last 7 days.
Bloglines.com: Sent 70 of the posts during this time frame. It missed 30% of the 100 posts.
I've looked through the settings options in case I needed to tweak something, but it doesn't seem like there is any way to correct the problem using those applications. So in conclusion both of them have failed in my opinion and I won't be spending any more time on this.
-
I tried to register in bloglines.com, but every username that I put they said was taken. Something wrong, because it didn't matter WHAT I put!
It took me a few tries before it accepted a username for me, but the site does seem a bit glitchy.
-
Ok let me get this straight. For Dr. Yasen its scientifically unacceptable the immune theory. Moreover the desens therapy is just a placebo at best, if not dangerous.
For Dr. Yasen it's more likely an atopic hypothesis. He tries to tell Dr. Waldinger which pretetends not to listen refusing his papers and not replying his mails and stealing the atopy theory instead.
This is what i got about the whole thing. Is that what happened?
But I just don't understand.. Some users like vandemolen reported some improvement with desens. Are all of them a placebo effect ?
Drs. Attia and Yasien are saying that the skin prick tests for POIS might not be a valid test for POIS because most(or all) normal healthy men would have a reaction to the test. The reason for this is that even in a normal man the individual's own sperm is treated as a foreign substance by his immune system. I don't think this means anything definitive about immunotherapy(desens). My thought is that perhaps POIS sufferers would tend to have greater and more visible skin reactions to semen than healthy subjects. I'm not entirely sure about the rest of it, but by saying POIS sufferers are likely to be atopic it appears to me that they believe we may tend to have more allergies in general than the norm.
-
There is also the fact that Dr. Waldinger did not test the patients for anti-sperm antibodies. And if autoimmune theory was true then most of the sperm should have been destroyed by antibodies resulting in infertility of the patient
-
Thank you, Vincent, poiseidon, Bulbo, and others, for keeping the discussion alive.
As an analogy, my TRT works like a charm (for me), but I cannot tell anyone WHY. There is no "testosterone theory" investigated that has a test group and a control group.
And there is *no* control group in the desens "study". Every medical investigator I've talked to says "without a control group of non-POISers, this is *not* scientifically acceptable medical research that was published."
And (again, analogously) even though TRT's worked for some people, I would never recommend it directly to another individual and I constantly caution people to investigate the risks, like losing the ability to have children.
I've been involved in POIS forums since 2007 and although hundreds of facts and hypotheses have been whirling around and flying in many directions...we are unfortunately still in the Dark Ages of POIS. We know nothing. Yet!
-
Thank YOU, demo.
I guess that if we'll ever get any close to the cure, any of us would have to owe it to you, Dave and to all members who contributed with their time and donations to make it happen.
And if we do find a cure I think we won't have any excuses not to become very rich and meet on a secret island every five years. ;D
-
There is also the fact that Dr. Waldinger did not test the patients for anti-sperm antibodies. And if autoimmune theory was true then most of the sperm should have been destroyed by antibodies resulting in infertility of the patient
It's not necessarily sperm that's causing the reaction. I think it's more likely some other component of semen, which the animus case seems to support since he didn't get full relief from pois until having surgery to nearly completely eliminate semen production.
-
That's exactly what I was talking about! ;D
-
There is also the fact that Dr. Waldinger did not test the patients for anti-sperm antibodies. And if autoimmune theory was true then most of the sperm should have been destroyed by antibodies resulting in infertility of the patient
It's not necessarily sperm that's causing the reaction.
True. When I lost my sperm...I still had POIS.
-
You can make fun about desensitization. But I have 70 % less symptoms thanks to desens. I think a lot of forum members would be happy with 70 % less symptoms. Making fun about a method will not help us. Niacin doesn't work for me. But I am not making fun about niacin. I also not making fun about testosterone or other methods. I am very disappointed in some people.
I am 100 % sure that the POIS grant will not go to a doctor who supports the auto immune theory. But desens helped me. And removing my tonsils helped me. I was quiet for a long time about this jokes and this mocking. But I have to say it now.
-
You can make fun...[jokes and this mocking] about desensitization.
No jokes here, Vandemolen!
Just steady discussions where *serious* concerns are expressed for ***the entire POIS community***, present and future sufferers all. About desens. There are problems. Sorry!
We are all ***sincerely pleased*** that you are feeling better!
Any humor introduced is welcome as long as it does not attack another member. In fact, someone complained that a recent cartoon shown was too pro-desensitization! Others said it was against. I saw it as simply Forum Humor. Different perceptions lead to controversy. We are controversial here, but we are FRIENDS. We want us ALL to be POIS-free!
Van, we ***all*** want the same thing: (1) a cure (something that works for EVERYONE) and (2) a theory that holds up to stringent medical scientific scrutiny.
Apart from the innocent cartoon, there are NO JOKES here, van. This is dead-serious business.
I am 100 % sure that the POIS grant will not go to a doctor who supports the auto immune theory.
Perhaps because the Medical Advisory Committee (MAC at NORD -- one of the most distinguished medical review panels in the world) might not see sufficient medical research integrity and justification in autoimmune?
But...please explain why, Van, did you say that you are 100% sure that autoimmune will be rejected for Grant study?
Please reply. Thank you.
-
Everybody who will make jokes about your TRT treatment, will get a ban. I am 100 % sure of that. And you only joke about desens because dr. Waldinger didn't reply to your email. So please show me your jokes about TRT treatment or about Niacin.
Mark my words: the grant will NOT go to a doctor who supports the auto immune theory. About a few months we will know that I am right. Daveman used to be neutral about desens, but because of you he also became negative about it. You 2 are admins. You should be a bit neutral. But you are not. And why? It's all about that email. Read your own posts about desens before you became angry. We gave a lot of money! So personal matters shouldn't count!
-
Mark my words: the grant will NOT go to a doctor who supports the auto immune theory.
I ask you, kindly, Van, for the 2nd time: why do Y O U say that "the grant will NOT go to a doctor who supports the auto immune theory."
Again, I ask you to please reply.
Thank you.
edit - I have replied to your other statements at the "Desensitization Plan Begins" thread, but I refuse to reply to your accusation of a "desensitization, personal smear campaign." That is highly *insulting to me and Daveman and this Forum!
I think we have now exhausted this particular subject (scientific questioning of desensitization) repeatedly, with misunderstandings repeating themselves over and over and over.
I have nothing more to repeat.
Again, my best wishes with your desensitization -- and your health.
*But please don't malign/disparage this Forum's integrity ever again.
Thanks.
-
[When] we do find a cure I think we won't have any excuses not to become very rich and meet on a secret island every five years. ;D
(http://farm4.hv-static.flickr.com/3201/2909686963_a2a3671f33.jpg)
POISers' Secret Island Retreat
-
Everybody, we can help out the research process by going here
http://tinyurl.com/k9noay9
and telling the researchers what POIS is.
What has helped you.
What makes it worse.
This is our opportunity to have a voice.
[
-
Everybody who will make jokes about your TRT treatment, will get a ban. I am 100 % sure of that. And you only joke about desens because dr. Waldinger didn't reply to your email. So please show me your jokes about TRT treatment or about Niacin.
Mark my words: the grant will NOT go to a doctor who supports the auto immune theory. About a few months we will know that I am right. Daveman used to be neutral about desens, but because of you he also became negative about it. You 2 are admins. You should be a bit neutral. But you are not. And why? It's all about that email. Read your own posts about desens before you became angry. We gave a lot of money! So personal matters shouldn't count!
Just a note!
I want it made 100% and perfectly clear, that we have absolutely NO word or control over what the NORD MAC decides, and wouldn't want such either. Nobody here is qualified to make decisions that could lead our whole community down the wrong path.
That is precisely why we chose the NORD program, and the highly experienced and respected independant Medical Advisory Committee. The experience to assure a sure and confident direction, the respect to assure that the results will be taken seriously once they have been processed and independence to assure that real medical fact is used to guide the process.
-
But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald, all other docs, allergy specialist, etc, says it doesn't make sense...
Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.
-
But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald, all other docs, allergy specialist, etc, says it doesn't make sense...
Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.
If there is no scientific basis, the MAC will know it.
I have my beliefs, and gut feel about it, we are all personally invested in the perspective that most suits our symptoms, but it goes way beyond how we feel and what we think it is.
Original sufferers of diabetes or heart disease would never have imagined what the cause of their disease was. Often it doesn't "feel like" what it really is.
The NORD MAC is 100% scientific about their approach, and use a huge amount of combined experience particularly in rare disorders, which are among the most complex of all disorders.
We need to trust in them.
I would feel apprehensive about several possibilities that could arise. But if they decide to go in a specific direction, it's for a very good scientific reason.
If there are no convincing programs, it's likely they will take an approach which will lead to the best direction. I don't know, from here on in, it's in their capable hands.
-
How many have conducted a antibody test just AFTER orgasm like IgE ( allergy antibody), or other antibodies like IgA etc.? Anyone tested IgE before desens. ?
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But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald, all other docs, allergy specialist, etc, says it doesn't make sense...
Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.
If there is no scientific basis, the MAC will know it.
I have my beliefs, and gut feel about it, we are all personally invested in the perspective that most suits our symptoms, but it goes way beyond how we feel and what we think it is.
Original sufferers of diabetes or heart disease would never have imagined what the cause of their disease was. Often it doesn't "feel like" what it really is.
The NORD MAC is 100% scientific about their approach, and use a huge amount of combined experience particularly in rare disorders, which are among the most complex of all disorders.
We need to trust in them.
I would feel apprehensive about several possibilities that could arise. But if they decide to go in a specific direction, it's for a very good scientific reason.
If there are no convincing programs, it's likely they will take an approach which will lead to the best direction. I don't know, from here on in, it's in their capable hands.
We are betting $33,500 that they know more than us.
Safe bet, I think.
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But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald, all other docs, allergy specialist, etc, says it doesn't make sense...
Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.
For that excellent reason, LAPOISSE, we should try to maintain a relationship with the researcher once selected.
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Demo & Daveman,
With all due respect, I think that Van's sentiments regarding your objectivity and suspicions regarding the objectivity of the funding process should be taken a bit more seriously. Some of the comments that you've made regarding desensitization have absolutely made it seem like you have an agenda -- and, all the more troubling, have made it seem like you have an agenda with an even more tenuous scientific basis than desens. I think this is incredibly troubling for those of us who have seen the positive effects of desensitization and credit it with restoring our lives.
I, for one, am immensely grateful for this message board, and to each of you for the information that it's provided me with. It was the impetus for my acquiring treatment, and has kept me and my doctors well informed of new developments in the field. I honestly credit POISCenter with enabling me to be productive enough to get my current job, which pays quite well. But despite the fact that I credit this board for my improved financial standing, I didn't donate to the recent funding drive because I was concerned about the rigorousness of your selection process and the potential for your biases to influence it.
I know that both of you consider yourselves to be sufferers of a disease rather than leaders of a community. But you need to realize that, because you're the moderators of what's essentially the only POIS board, you have real influence. And, if you want to use that influence to raise money for our disease, you might be more effective if you downplayed some of your more impolitic sentiments.
Daveman and I strive mightily to be empathetic, impartial, fair, honest, POIS sufferers who simply want the BEST for ALL POISERS.
Present and Future POISers ALL.
Simple.
I'm sorry if we stepped on any toes, but the FORUM BALANCE of desens needed some more serious scientific scrutiny. Looking at the Forum, there are FAR more *positive* posts about desens than negative.
But it's difficult to have dialogue when certain forum members either misunderstand our intent, and do not respond to some of our very honest, FACTUAL (not "smear campaign") queries or they see every scientific or medical concern as a THREAT.
Major desens concerns have been brought up repeatedly both within the Forum Community and the Medical Community outside.
Should Daveman and I ignore all that? THAT would be biased moderating on our part.
Egordon, I sincerely wish your personal program great success.
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[reply from Daveman to above post from Egordon 6/24/2013:]
"EGordon,
Van was overreacting to something that wan't there.
Demo and I communicate daily, and I can assure you, there was nothing on any kind of agenda for "making fun" of the
desensitization program.
It is true however we had been discussing the desensitization program based on the post from
Prof. Dr Abdalla attia & Dr Hossam Yasien. (Which BTW supports information we have heard from other professionals in solid positions).
Several points I'd like to make:
1) We had great support from members of the forum, and were fortunate enough to raise funds to support the ONLY
program tha will get POIS out of the dark. It's unfortunate that you didn't take the time to do just a little bit of research on
the NORD program. YOU WOULD HAVE SEEN THAT THERE IS NO WAY TO INFLUENCE THE RESEARCH DIRECTION. We intentionally chose NORD
for that reason. There had been, and still is far too much conjecture and amateur medicine trying to lead POIS
GOD knows where.
2) We are administrators of this forum, and besides the 600+ members that use the forum there are many others who contact us and
share, including researchers and medical professionals. Among those have risen some very serious concerns. It puts us in a very delicate position.
We know that we can annoy some of you who feel they have been helped with desensistization, but the risks are too great NOT TO SAY SOMETHING.
In the end, our influence is weak, those who do not want to hear, won't listen. All we can hope is that soon NORD will get to the root of it
and either our fears will be wiped out, or we may have saved many who were preapared to listen.
3) EGordon. What if, just what if POIS was not an allergy to semen? There has been no definitive proof that it is. We don't know if non-POISers don't react to
the skin prick test. Why has this test NOT been done? Ethics? Is it ethical to inject semen into a POISer, without really even knowing if he has antibodies or is
actually allergic to his semen? What if he is not? He may have some kind of auto-immune problem, but NOT allergy. Introducing semen to his blood on a regular basis
could cause a problem that is not there. A potentially serious problem. There's so much more I could say, but unfortunatley I am not at liberty.
4) It's very likely that anyone who has done desensitization will not be eligible for testing, as a matter of fact, it may be difficult to use anyone
from any of these forums to do testing because of the wide spread publicity of desensitization. How does a researcher know that an individual has NOT
done desens on himself? He cannot trust the readings. Does he have anti-bodies becasue he did desens, or becasue of POIS. People will lie to prove their point,
or to try to move their theory ahead. Does that help the POIS cause? So it may be very difficult to continue any real and valid desensitization testing.
Your only hope of that is that they can do desensitization testing without knowing if someone has previously tried it or not. One would have to assume that the desens.
theory is correct (scientists don´t like to assume) and follow some other double blind test procedure that is safe. It looks very difficult to me. You all really don't know what you are doing by trying to be docotrs yourselves.
Am I fear mongering? Complicated. I was a strong supporter initially of the "allergy theory", but I have heard too much to continue to support it.
I understand the problem. I could be stopping people from benefiting from desens., but I could be saving them as well. Based on the risks, I personally prefer the safe route.
There are plenty of forums on POIS who don't really care about our safety, and who are happy to be making you all happy with a new possibility ever other week.
It's the easy route. This hasn't been easy."
[Daveman]
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You have received more than just a few applications for your POIS grant!!! These applications are SERIOUS!!
You've got experienced researchers who want to understand POIS!! They're willing to do the work -- they actually WANT to do the work!! The dedication comes right through their applications, loud and clear.
To me, this is the happiest news ever since the forums started in 2007! :) :) :)
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But that said...I really hope Nord will not spend 30K$ to investigate about autoimmune theory...There is no scientific base suporting this, there is a really few report of succes, and apart Wald, all other docs, allergy specialist, etc, says it doesn't make sense...
Frankly and after discussing with many, I don't think we should focus that much on O or sex ; My POIS get worse with O but the problem is somewhere else...I think it's easier of all of us to identify a clear trigger and symtoms related but I think it's more complicated that that and we should avoid any personnal missinterpretation or the researcher will get lost.
I have not been active on this forum for a long time and I was not able to contribute financially to the fund but I am fighting hard to gain some insights into POIS etiology and potential treatment/cure. My situation is special insofar as I believe that my POIS is caused by a physical trauma (breaking the blood/testis barrier) of my right testicle, resulting in continuous pain and 24/7 POIS. This hypothesis lends itself perfectly for testing it by removing the suspected cause... which is what I am trying to have done (call it the 'half-animus' solution ;)). The trouble is finding a physician willing to do the surgery.
To come back to Lapoisse's assurance that POIS is NOT autimmune related, I on the other hand am to 99% sure that it is. Like all of you I cannot provide any supporting evidence other than my own situation / experience but I am trying to change that. Currently I am undergoing a placebo controlled immunemodulatory therapy, sounds fancy, is very simple. I take one pill every day for 7 weeks, 6 weeks I am given a placebo, 1 week it will be Prednisone. So far I am in the 4th week and no results but I am very optimistic. Is there still nobody else on this forum who has ever tried Prednisone or even Dexamethasone?http://en.wikipedia.org/wiki/Glucocorticoid (http://en.wikipedia.org/wiki/Glucocorticoid)
Only yesterday I looked into the wikipedia article on 'Chronic Fatigue Syndrome' (CFS) and was extremely surprised on how well it fit my situation! Of course it does not cover the 'Post Orgasmic' part or my testicle pain but besides that it perfectly describes my experience and situation. I wonder why not more references are made here to CFS or attempts to reconcile any research that has been done so far on CFS with POIS? I would even go as far and throw POIS, CFS and Fibromyalgia all together because I suspect the same underlying immune mediated mechanism (not cause). Just google for 'fibro fog', which is very much the same as most of us are experiencing. I wish I had read the CFS article earlier, it is very well written and would have helped a lot if I had referred to it the first day I stepped into a doctors office... Check it out on wikipedia http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome (http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome) or scan over my highlighted wikipedia PDF version, with the highlights referring to the points most pertinent to my situation / medical system experiences https://mega.co.nz/#!SRkngK7L!LTpiJSIboNc7EuHazgHiJEufZTFhlHf0OR4ED4eu3lQ (https://mega.co.nz/#!SRkngK7L!LTpiJSIboNc7EuHazgHiJEufZTFhlHf0OR4ED4eu3lQ)
BTW, I am not allergic to my own semen and both serum Anti-Sperm-Antibody (ASA) as well as sperm Mixed Antiglobulin Reaction (MAR) were negative. In the developed country I am living in it was not possible to obtain an Immunobead Test (IBT).
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Warmest greeting to all!
A guest blogger (i.e. a patient with a rare disorder) wrote a "guest" blog for NORD. I had the pleasure of meeting this amazingly brave young woman at the Boston Marathon this past April (the "infamous" Boston Marathon -- where an incredibly horrible act of evil took place).
I think you will all appreciate her blog --
http://blog.rarediseases.org/an-ordinary-day/
If you feel up to it, show her your support by leaving a comment on the blog page. All emails and names are confidential.
Stef
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Warmest greeting to all!
Warmest greeting back, Stef! :)
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I've actually put my work on my summary of the member case symptoms and treatments on hold. I have to focus on other things for a while. I'll give you the link to what I've done so far in case anyone is curious or wants to continue where I left off:
https://sites.google.com/site/poiscompilationsbyvm/
Vincent M, excellent start!
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this great news. can i post it on the other forum.
Sure! :)
CertainlyPOIS and others: feel free to post any POIS news anywhere! The more sufferers we reach the better it is for everyone.
Demo
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what is the best place to share my symptoms... the place where my info will be taken into account and added to the database of facts? thank you...
Use this link, and post there, thanks:
http://poiscenter.com/forums/index.php?topic=81.0
This can help our POIS Research Grant reviewers and medical researchers with this information. Thanks.
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(http://www.drugabuse.gov/list/2009/issue009images/research_animation.gif)
Just coincidentally, today or yesterday maybe it was, another $100 donation came in.
Great news and great going to the donor. This donation will apply to next year's pot, but it will apply, and will make the load smaller next year.
Donations from here on will very likely be leveraged, that is, with the attention and advance brought on by the first research program, we will start to see more interest from outside in supporting something "more real".
Thanks again donor.
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Thank you, donor!!
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The research that's been started by this group gives a glimmer of hope to all here with POIS.
Excellent news on the researcher front. Well done all involved !
Colm, thanks for your research support!
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Fire this doc!
(http://i858.photobucket.com/albums/ab143/demografx/45E8A934-365D-436E-8CDE-8D38502DA919-120-000000049D3DF695.jpg)
"You say you have POIS? You know it's all in your head, right?...so I'm referring you to Dr Probeyourpsycheforever. Oh! And remind him that he owes me a POIS finder's fee!"
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(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
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In addition to serving our own informational interests, the resources listed at our Welcome Page
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
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Daveman and I have been advised the following about our POIS grant.
The initial abstracts have been reviewed and scored by NORD's MAC.
There are some very strong finalists for the POIS grant. They will be submitting lengthy, in-depth proposals.
No news will be available until the final decision in late November/early December.
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Quote from: Daveman on August 04, 2013, 08:22:46 AM
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Thanks, Prancer! :)
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I wanted to ask Colm how his trials with niacin have gone?
Have you tried it again with the "adjusted approach"?
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I wanted to ask Colm how his trials with niacin have gone?
Have you tried it again with the "adjusted approach"?
Daveman,
As work has been a priority recently, along with a few days family vacation, I have just avoided all matters "O" related, as I can't take risk of the 3 day plus negative health impacts post Orgasm.
I will get around to trying this, in the smaller dosage and with the approach you shared, to avoid the scary physiological response I got first time I took too much Niacin flush.
Will report back when I have tried.
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Seems like the only _consistent_ (works for almost everybody) POIS remedy reported since 2007 is...short-term celibacy.
I can't wait for NORD's selected researcher to get underway !!
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You are all cured ...or maybe just all in vacation ?
Not a word in this forum for 3 days...
I've been in vacation for a week...worse vacation ever..POIS hit every single day...It's globally getting worse...No way to have relief after at least a week after O...and kinda constant POIS after....deseparating...
What about creating a section of succes story(with the rule of the 2 weeks...and even for people that have a permanent improvment of the global healh) in here...I have the feeling that when people get better, they just leave...
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You are all cured ...or maybe just all in vacation ?
Not a word in this forum for 3 days...
I've been in vacation for a week...worse vacation ever..POIS hit every single day...It's globally getting worse...No way to have relief after at least a week after O...and kinda constant POIS after....deseparating...
What about creating a section of succes story(with the rule of the 2 weeks...and even for people that have a permanent improvment of the global healh) in here...I have the feeling that when people get better, they just leave...
Yes, well,, summer is a pretty lazy time, and many have less symptoms as well in summer. I think it's as you say, the better people feel, the less they are involved.
Checking the numbers though (visits per day), we are close to normal, down in general during summer, maybe 20% but some days, even though there is no posting, people still come to have a look.
It's unfortunate that so many just watch, and don't share, but many are shy, and especially with POIS, motiviation is a problem.
But it is a very exciting time. We have some excellent options for research (I am told... don't have a clue who or what their approach is even, but I am told that we should ALL be pleased)
So hang in there!
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Thousands of doctors practicing despite errors, misconduct:
http://m.usatoday.com/article/news/2655513
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Thousands of doctors practicing despite errors, misconduct:
http://m.usatoday.com/article/news/2655513
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Thank you for posting this important message, demo.
I don't understand how any physician could prescribe Oxycontin (a slow-release 12-hour morphine compound) and oxycodone (Percocet) for someone with neck pain. Someone with that type of severe pain belongs in the Emergency Department -- being evaluated while being medicated.
What a tragic case (young mother, three children)!
I wonder if there are websites in Europe -- or in other countries overseas -- that divulge this type of information about physicians harming patients through medical malpractice -- repeatedly. In Europe (and possibly other countries) one can't sue a physician for malpractice.
Does anyone know if this type of reporting takes place in Europe or other countries outside the US?
We've all got to trust our gut feelings about physicians -- even if the physician has "great credentials." If the treatment seems too good to be true -- leave! Your life and future health could be at stake.
(I've heard from many, many patients at NORD who were inappropriately treated by physicians who should never have been trying to treat them. We featured the story about one woman who survived only because she was lucky.)
Stef
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We've all got to trust our gut feelings about physicians -- even if the physician has "great credentials." If the treatment seems too good to be true -- *leave! Your life and future health could be at stake.
*emphasis mine - demo
A published comment from a reader of the USA Today article:
("Thousands of doctors practicing despite errors, misconduct"):
http://m.usatoday.com/article/news/2655513
"And if you see your doctor and he/she seems too busy to listen... *Run away."
*emphasis mine - demo
(http://i858.photobucket.com/albums/ab143/demografx/45E8A934-365D-436E-8CDE-8D38502DA919-120-000000049D3DF695.jpg)
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I wanted to ask Colm how his trials with niacin have gone?
Have you tried it again with the "adjusted approach"?
An update on my live trial with Niacin, here goes.
I did approach this with positive hopes and am pretty sure I followed the approaches recommended.
As I had a serious flush on the previous occasion I tried Niacin three weeks back with 200MG initial dose of flush Niacin, I was being careful. (I didn't realise last time, it was a protection during Orgasm at that point), so this was a real trial.
On Sunday, I took about 100 Mg Niacin 3.5 hrs away from food. Had no flush after 30 mins, so gradually added smaller 50 Mg amounts over each next 15 mins and began to have a flush, light to medium flush, rather than full flush.
About 30-40 mins after flush, did the deed, and unfortunately, for the last two days, I have experienced my worst POIS in a long time.
No disrespect to anyone here, as I think it is great and encouraging to see that Niacin and other things are working for others as a shield.
I have been pretty shattered last couple of days, emotionally and physically (with symptoms as described in my signature).
I will start feeling a bit better from tomorrow, but have to carry on with life as normal, but could not work yesterday.
My thoughts at this point.
-----------------------------------
- Maybe I did something incorrect here with my Niacin dose. Maybe I needed more of a flush first?
- Maybe I need to go through a "pain barrier" with Niacin a few times to get the effect?
- Maybe my system will initially fight the effect, but then give in to it's positive impact?
- Should I persevere or try something else?
Another thought and please excuse the graphic details here...
I even started to think, as I was aware this was a trial, and as I am 54 yrs old, I did not have a full erection so therefore didn't ejaculate fully, so was thinking (at root of the problem) maybe remaining semen is poisonous to me in some way, and was wondering is this actually an allergy, an Auto-immune reaction, to my own semen, as some have spoken of.
Anyway, I am disappointed and a bit disillusioned at the moment, as this has been happening to me for so long.
Roll on some genuine research and clarity with NORD. Have been on the NSF recently and what they are discussing looks so complex, one could end up suffering from neurosis trying all that stuff, even though there is probably some value there, if I could make sense of it.
Appreciate any suggestions on the Niacin experiments. Thanks for the forum supports, as ever.
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I wanted to ask Colm how his trials with niacin have gone?
Have you tried it again with the "adjusted approach"?
An update on my live trial with Niacin, here goes.
I did approach this with positive hopes and am pretty sure I followed the approaches recommended.
As I had a serious flush on the previous occasion I tried Niacin three weeks back with 200MG initial dose of flush Niacin, I was being careful. (I didn't realise last time, it was a protection during Orgasm at that point), so this was a real trial.
On Sunday, I took about 100 Mg Niacin 3.5 hrs away from food. Had no flush after 30 mins, so gradually added smaller 50 Mg amounts over each next 15 mins and began to have a flush, light to medium flush, rather than full flush.
About 30-40 mins after flush, did the deed, and unfortunately, for the last two days, I have experienced my worst POIS in a long time.
No disrespect to anyone here, as I think it is great and encouraging to see that Niacin and other things are working for others as a shield.
I have been pretty shattered last couple of days, emotionally and physically (with symptoms as described in my signature).
I will start feeling a bit better from tomorrow, but have to carry on with life as normal, but could not work yesterday.
My thoughts at this point.
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- Maybe I did something incorrect here with my Niacin dose. Maybe I needed more of a flush first?
- Maybe I need to go through a "pain barrier" with Niacin a few times to get the effect?
- Maybe my system will initially fight the effect, but then give in to it's positive impact?
- Should I persevere or try something else?
Another thought and please excuse the graphic details here...
I even started to think, as I was aware this was a trial, and as I am 54 yrs old, I did not have a full erection so therefore didn't ejaculate fully, so was thinking (at root of the problem) maybe remaining semen is poisonous to me in some way, and was wondering is this actually an allergy, an Auto-immune reaction, to my own semen, as some have spoken of.
Anyway, I am disappointed and a bit disillusioned at the moment, as this has been happening to me for so long.
Roll on some genuine research and clarity with NORD. Have been on the NSF recently and what they are discussing looks so complex, one could end up suffering from neurosis trying all that stuff, even though there is probably some value there, if I could make sense of it.
Appreciate any suggestions on the Niacin experiments. Thanks for the forum supports, as ever.
Hmm. well that really should have worked. A bit close to food, but since you had a flush, even a mild one, you should have had "some" relief, and not "worse than ever".
I did about 300mg, more or less in the same way as you, this last time, Monday. I had a pork rib barbeque at 3 PM and did the naicin at about 8 PM, but still felt "full" from the barbeque. Didn't really get a flush though. And the results have been medium at best.
I've come off of some REALLY good trials with Viagra, and haven't done "just naicin" for several weeks, don't know if there's something involved there.
So, food before niacin, especially if it's heavy, can have a negative impact. But from your description, you really should have had some relief.
Sorry. So far, no ONE approach is good for everyone.
You could try once more a little farther away from food, but I don't want to see someone suffering "worse POIS" either, so up to you. At least the approach was more careful. Always important!
Good research coming up.
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Thanks Daveman,
Yes, your comments about taking Niacin on an empty stomach could be relevant here.
Although I had only a light breakfast, then waited 3.5 hours before starting the Niacin process, I had definitely a large meal taken late on the evening before. Probably explains my stomach being full and my liver still very active.
I will wait a couple of weeks anyway and give it a second trial, but make sure I have a bigger flush, building the dose carefully.
I'll see how I get on and report back. I shall hold off on a move to Viagra for later !
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Thanks Daveman,
Yes, your comments about taking Niacin on an empty stomach could be relevant here.
Although I had only a light breakfast, then waited 3.5 hours before starting the Niacin process, I had definitely a large meal taken late on the evening before. Probably explains my stomach being full and my liver still very active.
I will wait a couple of weeks anyway and give it a second trial, but make sure I have a bigger flush, building the dose carefully.
I'll see how I get on and report back. I shall hold off on a move to Viagra for later !
There could be quite a difference in the flush between 3.5 hrs wait and 6 hrs wait.
I have have one or two fairly strong flushes with only 100mg, but not excessive (like you originally had). But I usually take my niacin after about 4 hrs, and the flush if any is minimal. After 4 hours I usually have to take another 50 or 100.
Sorry about your POIS.
BTW, my last session (of Sunday night) was fairly POISy Monday. A fair bit better today. So although it wasn't as good as viagra, at least it isn't lasting long. But that was 300 mg (taken over about an hour) after heavy food 5 hrs earlier (almost no flush -- because of the busy liver I presume).
Another note. For some the B-Complex regimen works well, for me no, it made my POIS worse, like niacin did for your... so maybe the B-Complex regimen would work better for you. ??
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Daveman,
I just wanted to clarify that my recent trial of Niacin and the poor result was not a "fair" assessment.
I had a diagnosis this week of pre-existing low blood pressure (100) yesterday, which I am pretty certain (the symptoms of this) were there before I tried the Niacin flush.
I am awaiting some blood test results tomorrow to see what's caused the low blood pressure and to resolve without any meds hopefully.
I intend to get back to Niacin trials down the line a bit.
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(http://i858.photobucket.com/albums/ab143/demografx/45E8A934-365D-436E-8CDE-8D38502DA919-120-000000049D3DF695.jpg)
This doctor prescribes Rx for POIS:
(http://i858.photobucket.com/albums/ab143/demografx/EBC904E8-FD78-4FE0-BB59-9A8C9EF53E9F-280-0000001FEB828F14_zps91dce898.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/9F1B61BB-1257-41CE-A493-9660B24129B9-621-0000002B6E576997_zps92958cfc.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/45E8A934-365D-436E-8CDE-8D38502DA919-120-000000049D3DF695.jpg)
"What, Me Worry?"
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Thanks Daveman,
Yes, your comments about taking Niacin on an empty stomach could be relevant here.
Although I had only a light breakfast, then waited 3.5 hours before starting the Niacin process, I had definitely a large meal taken late on the evening before. Probably explains my stomach being full and my liver still very active.
I will wait a couple of weeks anyway and give it a second trial, but make sure I have a bigger flush, building the dose carefully.
I'll see how I get on and report back. I shall hold off on a move to Viagra for later !
Hi Colm, I read about your first experience with Niacin. I realize that after sexual intercourse sometimes I can suffer some mild POIS. This does not happen with "self-inflicted" orgasms. Maybe you should run the other trial - with yourself and see if there is any difference. Regards.
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Hi, Observer!
Welcome back. :)
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Thanks Daveman,
Yes, your comments about taking Niacin on an empty stomach could be relevant here.
Although I had only a light breakfast, then waited 3.5 hours before starting the Niacin process, I had definitely a large meal taken late on the evening before. Probably explains my stomach being full and my liver still very active.
I will wait a couple of weeks anyway and give it a second trial, but make sure I have a bigger flush, building the dose carefully.
I'll see how I get on and report back. I shall hold off on a move to Viagra for later !
Hi Colm, I read about your first experience with Niacin. I realize that after sexual intercourse sometimes I can suffer some mild POIS. This does not happen with "self-inflicted" orgasms. Maybe you should run the other trial - with yourself and see if there is any difference. Regards.
Thanks Observer,
Interesting point.
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Thanks Daveman,
Yes, your comments about taking Niacin on an empty stomach could be relevant here.
Although I had only a light breakfast, then waited 3.5 hours before starting the Niacin process, I had definitely a large meal taken late on the evening before. Probably explains my stomach being full and my liver still very active.
I will wait a couple of weeks anyway and give it a second trial, but make sure I have a bigger flush, building the dose carefully.
I'll see how I get on and report back. I shall hold off on a move to Viagra for later !
Hi Colm, I read about your first experience with Niacin. I realize that after sexual intercourse sometimes I can suffer some mild POIS. This does not happen with "self-inflicted" orgasms. Maybe you should run the other trial - with yourself and see if there is any difference. Regards.
Thanks Observer,
Interesting point.
Colm, Observer is one of the primer niacin benefactors. He was in a documentary that aired in Australia
http://m.youtube.com/watch?v=1_kqIpGUYpI
and was among the first (other than Victor Kons) to have excellent results with niacin.
Observer, I am having even BETTER results with viagra (hard to believe), aside from which, you don't need to fast. It's great (at least for me) It would be interesting if you could give it a try. Look for my posts on it, and follow the dosages etc.
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Thanks Daveman,
Yes, your comments about taking Niacin on an empty stomach could be relevant here.
Although I had only a light breakfast, then waited 3.5 hours before starting the Niacin process, I had definitely a large meal taken late on the evening before. Probably explains my stomach being full and my liver still very active.
I will wait a couple of weeks anyway and give it a second trial, but make sure I have a bigger flush, building the dose carefully.
I'll see how I get on and report back. I shall hold off on a move to Viagra for later !
Hi Colm, I read about your first experience with Niacin. I realize that after sexual intercourse sometimes I can suffer some mild POIS. This does not happen with "self-inflicted" orgasms. Maybe you should run the other trial - with yourself and see if there is any difference. Regards.
Thanks Observer,
Interesting point.
Colm, Observer is one of the primer niacin benefactors. He was in a documentary that aired in Australia
http://m.youtube.com/watch?v=1_kqIpGUYpI
and was among the first (other than Victor Kons) to have excellent results with niacin.
Observer, I am having even BETTER results with viagra (hard to believe), aside from which, you don't need to fast. It's great (at least for me) It would be interesting if you could give it a try. Look for my posts on it, and follow the dosages etc.
Appreciate that update and the link to the Australian video on POIS with Observer's Niacin piece and Dr. Waldinger Dutch experiments.
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(http://i858.photobucket.com/albums/ab143/demografx/2F2B6017-D979-4C61-9720-C195805362C2-269-0000008D89706683_zpsd7c8c460.jpg)
A typical morning in-POISer?
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Haha..Something like that!
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(http://i858.photobucket.com/albums/ab143/demografx/2F2B6017-D979-4C61-9720-C195805362C2-269-0000008D89706683_zpsd7c8c460.jpg)
A typical morning in-POISer?
Haha..Something like that!
(http://i858.photobucket.com/albums/ab143/demografx/photo-14.gif)
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NOTICE:
Today, Sept 13 2013, the hosting service is going to move us to a brand new server, 4 times faster and 4 times more memory with the latest of Linux revisions.
This will happen at 8 PM tonight EST, and they don't expect it to take more than about an hour. Everything has been backed up and moved and thouroughly tested, they just need to synchronize all the latest and make the move.
I am told that during the move you may notice sort lapses of service. So don't be alarmed, and everything will be back to normal in no time.
Sorry in advance if you experience any inconvenience. Our hosting service is very experienced and moves much more intense than this have taken place with a minimum of interference (if any).
Thx
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Daveman, thank you for all your incredible technical support of this forum.
In addition to all your great moderation/administration!
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Thanks Daveman!
There's a lot of work involved in the background to maintain this great forum and we all appreciate that very much.
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8) Thanks Daveman, you're doing a fantastic job & also an excellent moderator, reasonable and rational!
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Thank you daveman!
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(http://i858.photobucket.com/albums/ab143/demografx/A1FA0EB4-4018-44DA-91B0-DFD2141495F8-650-000000352AFFA3AB_zps2b43b3a0.jpg)
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why Rutgers they just beat my team for two years in a row.
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CertainlyPOIS, life's unfair!
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What happened to the number of the members ? Some days ago was somewhere 9 hundred and now 660.Did we have any deleted ?
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What happened to the number of the members ? Some days ago was somewhere 9 hundred and now 660.Did we have any deleted ?
Yes, I did a cleanup. A short while ago, I blocked some spammer robots, they're like GoogleBot ( that scans for valid pages, and give you exposure), but give you exposure to spammers.
Some of the spammer bots are more powerful than Googles bots! And even though it's a great improvement, it's an ongoing pain. They keep chaging their IPs and you have to regularly change the blocking addresses.
So I went through the database and erased a ton of members that pertained to "tainted IPs". There are members who register but never post, and I didn't want to erase them, but there are certain combinations that can be used to distinguish the "cockroaches". Sorry, but that's a NICE name!
So those that are left are more likely real members.
We do have a filter for members that have been reported by others as spammers, that helps a lot, but still a percentage get through. The filter has blocked 133,000 spammers since I put it up, about 18 months ago.
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THANK YOU, DAVEMAN!
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Thankyou Daveman
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It's OCTOBER -- in one more month, we're inching ever closer to the final selection-decision of POIS Researcher selected by NORD's prestigious MAC!
Hopefully it will be closer to late November rather than early December.
Nice Christmas present to us all!!
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(http://i858.photobucket.com/albums/ab143/demografx/8CAFFB13-3ADA-416F-9B02-73B8302E83A3-165-00000040E66F9EC5_zps1b52d31a.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/8CAFFB13-3ADA-416F-9B02-73B8302E83A3-165-00000040E66F9EC5_zps1b52d31a.jpg)
Nice one Demo...LOL, too true !
;D......thanks.
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Boy did I ever have POIS this last few days. It's been at least a year since I've had anything like this.
Sunday night, couldn't resiste the temptation. I am using viagra to prevent POIS. I usually take about 35mg, where I have to cut a 50mg pill "to measure".
So this time, I had a bunch of pieces left over. So I took what seemed to be about 35 mg worth.
I could tell that there wasn't m uch effect of the viagra, I don't know if leaving the cut up pieces exposed to the air had deteriorated the viagra, or if my esstimation
of the amount was wrong, but I had more problems than I expected to et a good erection. That should have been my warning.
But, BAD. two days of hell! I was reminded of what it is like. It's been a while since I've had to go through it.
Strangely though, near the end of day 2, almost within 3 hrs, it just went away. I'm fresh as a daisy today.
Just before it "broke", I took a spoonful of loratadine and an Ibuprofen. Not sure if it had anything to do with it, but I just got better from there on in.
Uuufff.
This stuff is crappy!
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I am using viagra to prevent POIS.
Hi Daveman, sorry for your relapse experience although good to hear that it cleared relatively quickly. Are you still using Niacin though? Has viagra been working for you without niacin? I seem to have missed something while I've been away...
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haha, I almost forgot, happy halloween everyone! hopefully the treat we all get is a cure from this monstrous illness! :)
Agreed!
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Hey guys, I need a piece of advice!
I have a big presentation coming up on the 12th of November and so I want to be on my best mental performance for that day.
Regarding the timing of O?s, I have 3 options:
1. Keep abstaining until the 12th of November, (It has current been week since O) therefore total 16 days recovery.
2. Have an O today, that way I have about 10 days recovery until presentation
3. Have an O Tuesday, that way I would have exactly a week recovery.
What do you guys think is best from experience? Do you think if I keep abstaining until the presentation (Option1) I would feel too stressed and anxious for the presentation? Thanks guys.
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Lycos, that's a very personal decision. Everyone recovers differently from POIS.
As I have no problem abstaining for long periods of time, I would choose option one.
Good luck!
Hey guys, I need a piece of advice!
I have a big presentation coming up on the 12th of November and so I want to be on my best mental performance for that day.
Regarding the timing of O?s, I have 3 options:
1. Keep abstaining until the 12th of November, (It has current been week since O) therefore total 16 days recovery.
2. Have an O today, that way I have about 10 days recovery until presentation
3. Have an O Tuesday, that way I would have exactly a week recovery.
What do you guys think is best from experience? Do you think if I keep abstaining until the presentation (Option1) I would feel too stressed and anxious for the presentation? Thanks guys.
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I am using viagra to prevent POIS.
Hi Daveman, sorry for your relapse experience although good to hear that it cleared relatively quickly. Are you still using Niacin though? Has viagra been working for you without niacin? I seem to have missed something while I've been away...
I take the viagra, and wait about 45 min to an hour (the usual amount of time for it to take affect). Then I take 50 mg of niacin sub lingually, and perhaps a second dose of niacin sub-lingually depending on how I feel. The viagra can intensify the naicn flush. If the first dose didn't produce the niacin flush, I take a second. Whether the niacin finally produces a flush or not, I only take a max of 100mg.
I suspect I don't need the niacin though. On occasions where the viagra effect was fairy strong, I hardly took any niacin, and it still works.
The viagra, for the most part has worked way better than the niacin. Almost zero POIS.
I started taking 25mg viagra (half a pill). Now I have to take 50mg for it to work. (both for the errection and for POIS).
The day of the relapse, I didn't take enough.
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Hey guys, I need a piece of advice!
I have a big presentation coming up on the 12th of November and so I want to be on my best mental performance for that day.
Regarding the timing of O?s, I have 3 options:
1. Keep abstaining until the 12th of November, (It has current been week since O) therefore total 16 days recovery.
2. Have an O today, that way I have about 10 days recovery until presentation
3. Have an O Tuesday, that way I would have exactly a week recovery.
What do you guys think is best from experience? Do you think if I keep abstaining until the presentation (Option1) I would feel too stressed and anxious for the presentation? Thanks guys.
Option 2 seems OK, although it's already Sunday. Even today woud be good.
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Hey guys, I need a piece of advice!
I have a big presentation coming up on the 12th of November and so I want to be on my best mental performance for that day.
Regarding the timing of O?s, I have 3 options:
1. Keep abstaining until the 12th of November, (It has current been week since O) therefore total 16 days recovery.
2. Have an O today, that way I have about 10 days recovery until presentation
3. Have an O Tuesday, that way I would have exactly a week recovery.
What do you guys think is best from experience? Do you think if I keep abstaining until the presentation (Option1) I would feel too stressed and anxious for the presentation? Thanks guys.
Lycos,
A common dilemma ! Am sure you are sorted advice wise. If you went for 2, you probably won't read this anyway, cause you will be in POIS.
As it sounds like you are fairly young, I think 2 or 3 above, as you probably recover quickly, post 3 days.
Good vibes on the 12th !
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Hey guys!
Really appreciate the advice; I actually have no problem abstaining but for some reason Im a type of person that if I abstain for too long I feel nervous and depressed. I guess a good balance is good; however for the sake of the presentation on Novemeber 12th, I think I?m gonna stick with option 1 and go 16 days with O; If I end up feeling nervous Ill take some L-theanine the day of. Thanks again, Ill let you guys know how it went!
Take care,
Chris
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Hi Chris! For me, longer is better when it comes to abstaining. But my definition of abstaining is simply no orgasm. I've read that many poisers have better results from avoiding any kind of stimulation and sex, even if they don't end in a climax. My symptoms don't 100% go away when I abstain, probably because either I don't abstain long enough, or what I mentioned before about stimultion without O. Good luck!
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I read that if you abstain for a week your testosteron level raises by 45 %. Maybe that is the reason why a lot of POIS patients feel less POIS when they have an O. after a long time.
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I have been experimenting with Niacin flush over the last two months.
With Daveman's encouragement on this forum, I persisted with a Niacin Flush trial, and the following are my experiences so far. Some minor negative ones, but some very positive ones.
My trial, like other folks experiences, are my own experiences, and will likely be different for others, but they are relevant (for POIS) in that I believe I'm one of the more chronic sufferers from POIS here. I'm 54 years of age, married with two children and have somehow have managed to keep my career afloat, while dealing with the effects of POIS since teenage years.
On to Niacin....
Initially I bought niacin without the flush. As Daveman then pointed out, this wouldn't have worked. "You need the flush" type, he said. A good call.
My first dose of niacin flush, I took without contemplating an "O" at any point afterwards, as I avoid for obvious reasons.
I hadn't realized however, that Niacin's main impact is supposed to be in reducing the 'three-day effects' after an "O".
So, on an empty stomach two months back, I took about 150 to 200 mg of niacin flush in one go. Thanks be to "flip" I didn't take the full 500 MG capsule then (be careful guys). As many of you know, the initial onset of this flush, when you haven't had it before, is scary indeed, although not dangerous, but within about 45 minutes, this flush is reversing rapidly. I think, post flush, I felt a good amount of energy after taking that initial dose, but was shaking. I didn't necessarily dwell on this experience in a favorable light at the time, and as I also didn't do the "O" bit.
About a week later, I decided to try Niacin again, but this time with an "O". I didn't have too much of the flush this time, because I took the Niacin closer to food (so my liver was probably occupied). Post "O", I was then really very unwell and in fact for the next two weeks, more ill than normal. In hindsight, this was most likely because I didn't really have a proper niacin flush this second time, and I had a bad reaction, and also maybe a crushing disappointment too. I couldn't work full time or anything after this experience.
I was therefore quite reluctant to try Niacin flush again, certainly with an "O".
I had left it about two weeks, thinking this isn't for me and was very disappointed, but I decided I would try it a few more times, but absolutely without an "O".
The next few times that I did this, I had a proper full flush, having left it the recommended 'six hours away from food', each time. NOTE: I also used Daveman's recommended putting the white Niacin flush powder under my tongue, to get into the blood stream and then after a few minutes, take some water to ensure remainder goes into my stomach, not eating also, for an hour afterwards. Note, if you have kids, throw out the rest of the capsule's content or they will think you are snorting something dodgy!
Amazingly... I started to experience my POIS symptoms reducing quite a bit over the next couple of weeks. This might sound quite dramatic but it is my own truth here, that is...for the first time in 35 years, I experienced some true feelings of physical and emotional well-being and what that is like, I do remember from being a younger boy. The famous old Van Morrison song "Coney Island" says at the end. "Wouldn't it be great if it was like this all the time". If only it lasted with POIS and the treatments were permanent.
For the record here, my own POIS symptoms post "O" for these decades include:
Physical.
Seborrhoeic dermatitis in my scalp and on my face, and to a lesser extent in other areas, the symptoms are treated for decades okay with creams.
Photo (Sun) aggravation. Even a minute direct exposure to sunlight affects me physically and emotionally in a very negative manner. I have had to wear hats and avoid sun holidays a lot since 18 yrs of age. When I have brought my family on sun holidays, I can be miserable for the two weeks, if I have to be in the sun for long. POIS sucks !!!
Chronic sinusitis. The symptoms now are treated okay for decades with cortisone nasal spray.
Headaches. Waiting in the early morning for decades, feeling like crap. The headaches used be so bad, that I became addicted to painkillers, and also underwent three sinus operations.
Mental.
Brain fog and difficulty with cognitive functioning, memory problems.
Emotional.
Depression and social phobia three days post "O". I had a major nervous breakdown due predominantly to the impact of POIS on my social life and after failed exams and academic failures, through poor concentration etc. This was in my 20's and I was hospitalized for 3 months and on anti-D's for many years after. I have learned emotional coping mechanisms and tools over the years to cope.
I know POISERS have had many of these and many other worse symptoms to deal with.
Back to Niacin....
In the early BEST moments of my Niacin trial, all of these symptoms above reduced quite substantially, although they did not clear fully. This is in spite of the fact that I didn't actually have any faith that niacin would help me, as very little else has.
In the last month, the impact is less, but I have continued to take a hundred milligrams of Niacin flush, six hours away from food, just once per week, as it the flush also has a physiological impact that I wouldn't want to risk any more than once a week.
I have still predominantly avoided "O" mainly, as I am just in the habit of doing so now and with work pressure and family commitments, I can't risk not being able to function. This also doesn't help a relationship obviously.
I did notice though, after a proper flush and a couple of "O"'s so far, that my POIS fallout was probably 30% less than normal. I may grow in confidence with Niacin (and try Viagra) for "O" related matters.
I have not been cured of POIS by the Niacin so far. However, my experience is positive enough so far, it has given me hope and has raised my motivation to just hang on in there and see what comes out of the research.
Please be careful.
I read this forum and the other main forum. I see so many different things that people try. I see the courage of everyone to deal with their own POIS in the best way for them, and to try new things.
This is great, but hard to know what's valid, downright dangerous and what's not. As with recent suggestions, please do be careful with Niacin and other vitamins etc. I nearly killed myself in my 20's by taking a large bottle of cod liver oil every few days, cause a nutritional wellness book promised taking large doses of Vitamin A and removing so things from my diet could cure bad dermatitis.
One can truly become neurotic about trying too much and believing everything, mixing everything when you are desperate, which is what POIS can instill in a man, desperation. Believe me, I know.
So, please be careful with yourself. Validated help may come in the next year. But some things like Niacin or other things people share here could help you short term, but experiment wisely.
I'm totally confused as to what I should and shouldn't try next. I had actually tried so many many different things over the years, diet related, personal development and spiritual approaches, every therapy and every ology under the sun to feel well.
I have spent and wasted thousands and thousands over 35 years to improve my well-being (which was a downward spiral from teenage years and puberty). While I have till now, only had very slow, if any improvements in POIS symptom reduction, these approaches have not got to the root of the problem.
Shorter term, I am just sticking to niacin for now, and hopefully it will help keep my symptoms in the manageable category, giving me a few better days. I know there is a lot of potential in other things that people are talking about on the forums. I'm very grateful for Daveman's encouragement on the Niacin side and the help it has provided me in the last couple of months.
I eagerly await the outcome of the research, and sincerely hope that outcomes won't just be a drug that treats symptoms in a very limited way, and that it will actually get the root of all of our POIS related illness and the negative impact it has on our lives and on our families.
All the best for now guys.
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Thank you, Colm!
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Thanks Colm!
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That is great, thanks for sharing with us Colm; just to put it out there I am one of the niacin non-believers, not for anything I think I just haven't tried the "right" way to take it yet. I actually want to give it another try, would someone be kind enough to give me a detailed scedule of when and how I should take Niacin? At least if I try it properly I'll know for sure whether our not it gives me some relief; It would be much appreciated :)
Take care guys
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That is great, thanks for sharing with us Colm; just to put it out there I am one of the niacin non-believers, not for anything I think I just haven't tried the "right" way to take it yet. I actually want to give it another try, would someone be kind enough to give me a detailed scedule of when and how I should take Niacin? At least if I try it properly I'll know for sure whether our not it gives me some relief; It would be much appreciated :)
Take care guys
Niacin
1) Be sure you buy NORMAL NIACIN. Not slow release or buffered in any way. I know Nature's Way 100 mg capsules work well.
2) Take it on an empty stomach... the emptier the better. 6 to 8 hrs fasting prior.
3) Take 100mg one hour prior to orgasm.
4) Wait for slush, should take about 20 minutes to start. Then peaks within about 10 to 15 more. It feels like a mild sunburn. Face, arms and legs get red.
5) Flush begins to subside, wait another 10 to 15 minutes.
6) Go to it.
Viagra
I've had good success with niacin, but better with viagra!!
It's easier to take, because it doesn't require long fasting before hand. There is a mild flush, mostly in the face, but it feels less strong.
Take viagra 1 hr before orgasm as well. For me, viagra took 2 or 3 times before it worked its best.
After that almost zero POIS.
I started with 25mg... about half of one of the smallest pills. I've worked up to a whole pill (50 mg). It seems to have stabilized at that dosage.
You should feel the flush, and maybe a SLIGHT pressure in the head (for a sort period) If you get those, at least the flush, you know that it will work.
So there's two options to try.
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Any news on how the POIS research is going with the $30,000 NORD grant? Or any news on when there will be some more news?
hello
demografx
When will the [POIS] research [begin with NORD]?
thank you
This December.
I should be getting an update first week in December, maybe not who or what yet, but they are in the final throes of choosing the researcher.
So very soon we should know.
The first real professionally administered and controlled research on POIS.
Whatever the results, it will have to be useful.
I'll let you all know when the news comes out.
daveman
I and my Russian friends will be waiting impatiently
thank you
Thank you, Daveman!
This is a H I S T O R I C moment for all POISers!!!
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Hey guys,
its been a while since I have actively contributed or followed this forum but not due to a lack of interest but due to a lack of energy... constant POIS (24/7) is no joke. (see my previous posts for details on my condition)
I am finally posting an update again to inform you about my latest medical trials... and the so far negative results.
During the summer I finally managed to convince my immunologist to test weather immunosuppression with an immunmodulatory drug has any effect on POIS symptoms. I received custom made pills for 7 weeks, 6 of these weeks the pills would contain a placebo, 1 week it contained 20mg Prednisone. I did not experience any significant effect during any of the weeks and was not able to successfully state the week during which I actually received medication, according to the doc. So immunosuppression seems to be ineffective so far but I am still not quite convinced, due to reasons that will become clear later on, and will pursue a stronger (60mg Prednisone) longer term immunosuppression beginning next year.
Now to the major news, as you can read in my previous posts my POIS started with a trauma (squeezing) of my right testicle. I was experiencing constant, and post-ejaculatory stronger, pain in my right testicle and groin. It was thus a reasonable assumption that the right testicle was the cause of the pain and related POIS symptoms. It was a long fight but I finally managed to have my right testicle removed. I had an 'unilateral inguinal orchiectomy' performed one month ago. One testicle and spermatic cord were removed through the lower lateral abdomen, basically a 5cm incision in my pubic hair area. Surgery went well and just like after my previous surgery I felt incredibly good right after waking up from surgery. Might have been the drugs but I had no symptoms whatsoever and was mentally completely 'clear', a state of mind I have not experienced for more than 3 years. During the next hours my condition however worsened and I was hit by headaches that I would classify as 10x the usual POIS as well as a slight feverish feeling. The next morning a blood test revealed a severely increase white blood cell count (leucocytes) of 20,000 (should be max 10,000), which is indicative of a sever infection/inflammation. I received antibiotics for a couple of days and the value dropped to the normal range again. My surgeon attributed the extreme leucocyte value to a measurement error... I dont think so, since it was in line with the symptoms that I was experiencing. My wild guess (which I cannot corroborate) was that it was not some external bacterial infection (usual cause for this kind of WBC value) but that something got 'stirred up' during surgery, that had been there before, and is most likely the cause of the chronic POIS symptoms I experience. Surgery went well but absolutely no change in POIS symptoms. :( I even still seem to have some pain in my right groin area, though obviously no testicle pain anymore, but still have to wait for everything to heal completely to come to a final conclusion about the post-surgical condition.
However one positive result, the histological examination of the removed testicle revealed a chronic inflammation of the testicle! Why is this positive? It proves that the 'pain' that I was experiencing had a very physical cause and that the decision to have the testicle removed was medically warranted. However, I am still no further concerning the cause for the inflammation, and it proves that the testicle itself was NOT the cause of my POIS symptoms. I rather believe whatever is causing my POIS symptoms to be the reason for the inflammatory process found in the testicle... I fought hard before the surgery to arrange for the testicle to be cryogenically frozen, so it could be scientifically used for POIS research in the future but neither my surgeon nor a cryolab close to the hospital were willing to support this. This is very unfortunate, since it is highly likely that whatever causes my POIS symptoms had caused the inflammation of the testicle... and this cause would thus have to be present and detectable in the testicle... >:(
One very specific condition I am experiencing since a long time is pain in my right lower rib cage area, where the liver is located. In addition one blood test value, the SGPT is elevated and rising. It doubled during the last year to 123 U/l (max normal is 50). This is not the value pointing to alcohol abuse (not a regular drinker) but a potential inflammation. Is anybody else experiencing the same?
My next steps... Everything points to some kind of chronic inflammatory process in my body the cause of which is not clear. This inflammatory process could have caused the chronic inflammation of my testicle and is potentially responsible for my increasing pain in my right abdominal area and increasing SGPT. If this is the case, it is reasonable to test weather it would respond to a strong immunosuppression. I will thus proceed to test this again, this time not placebo controlled but with a higher dosage and for a longer term (supervised by a physician). Next on my to-do list is to test two different antibiotics that I have taken before, which seemed to have an effect on my POIS symptoms. I see however no logical reason for this to be effective since no bacterial infection had been found so far.
Please let me know if anybody else:
- is experiencing testicle pain or right side abdominal pain where the liver is located
- has elevated SGPT values
Cheers for now...
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Wow,
Really hard to read your post eur79m, you've had a tough time :(, buy also exciting to see someone finding out more information about this weird disease.
I have some ideas why you are going through some of your symptoms:
I have personally had some signs of liver disease despite not drinking very much. The liver filters a lot of toxins, and I think that has a connection to your positive response to antibiotics as well. User kurtosis has had major success after having had to undergo heavy antibiotics during his battle with some serious illness (including hepatitis A). He worked with a gastroentorologist who surmised that he had what is called Small Intestinal Bacterial Overgrowth or SIBO. SIBO can cause malnutrition (kurtosis found out he had anemia as a result) and can deprive the body of vital nutrients that the bacteria instead suck up. But the connection to your liver might be that SIBO has been associated with Leaky Gut Syndrome. The lining the intestine with this syndrome causes anything from toxins, to food particles, to bacteria to enter the bloodstream, which ends up stressing the liver AND putting your immune system into hyper activity.
I am about to take a test to determine if I have SIBO (hydrogen breath test). There is a newer antibiotic that is used to treat this (rifaximin) that is designed to act only inside the gastrointestinal tract.
I have had the worst allergy season in my lifetime this past summer, and I've always had issues. I wasn't able to function with at least twice the recommended dosage of over the counter antihistamines. I eat a controlled diet to minimize fungal overgrowth in my body, and I take probiotics to help keep my gut in balance. I would highly recommend dietary changes and probiotics to anyone with POIS.
Hope that gets you somewhere!
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Hi Both,
I had lots of gut problems about a year back. Wheat was causing my gut to bleed and I was getting classic intolerance symptoms. Removing wheat after eating so much for 30 years was a live changing experience. I would highly recommend to anyone even if they are not wheat intolerant to go wheat free for 6 months. I mean absolutely wheat free. Other food starts taste different, better concentration, more energy.
FB
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eur79m,
Inasmuch as I don't support sperm allergy and desensitization, I think that Dr. W. could have been very close.
Sperm getting into the bloodstream could cause an autoimmune response, which, even after the initial exposures would leave anti-bodies in the
bloodstream forever.
So in your case, I feel that damage to your testicle created an autoimmune condition (after years of exposure), that even once the offending testicle is removed,
leave a defensive army responsive in your system.
Just my opinion. The situation here is the response (or potential cure) to this problem is very different to that proposed for allergy.
I am convinced that my POIS has a very similar cause as yours. I had a vasectomy (20 yrs) and reversal.. My POIS started about 5 yrs after the reversal.
Anyways, perhaps in a couple of weeks, we'll know what NORD is thinking about all this.
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Daveman, what was your usual ejaculation frequency after you had the reversal?
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@Nightingale:
Thank you for pointing out SIBO and Leaky Gut Syndorme (what a name ;) ) I will look into it.
@Daveman:
I am also not a huge proponent of Dr. W's allergy theories and desensitization remedy. I have absolutely no allergies, have had the p r i c k test done and show no reaction to autologous semen. I also did serum anti-sperm-antibody (ASA) and sperm Mixed Antiglobulin Reaction (MAR) tests, which were both negative (no indication for auto-antibodies). In addition I had several serum autoimmune tests, pertaining specifically to the liver, performed due to the high SGPT liver value, all of them negative (no autimmune hepatitis, etc). Furthermore, my left body half feels pretty ok while my right abdomen/groin area is on fire, especially after ejaculations, with no testicle present on the right side...
Before my surgery an anti-sperm autoimmune response also seemed to be the most likely explanation to me, but now it all just doesnt quite fit together. There is some kind of immune response to sexual activity, I would consider the inflammation of my removed testicle proof for this. However, an immune response to what exactly...? Why do I still have this burning post-ejaculatory pain in my right groin only, whith my remaining left testicle being mostly painless? If it is an auto-immune response, doesn't that imply that there has to be 'something' in my right groin area after an ejaculation that has not (or in lower doses) been there before the ejaculation? Where would this 'something' come from (no right testicle) and why do I not experience similar post-ejaculatory pain on my left side? Quite a puzzle... and no explanation.
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When do we know where the POIS grant is going to? They said November or December.
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@eur79m,
Another compelling theory is that one of the herpes viruses is giving us issues, namely herpesvirus 6: http://en.wikipedia.org/wiki/Human_herpesvirus_6
It can be latent or dormant for a while, and any number of triggers can make it active. It has been connected to a nervous system problems. I am still learning about it, as is the entire scientific community.
The majority of humans are born with herpes viruses, just not all of them have symptoms. Might you have access to some tests or doctors who might know more about this? You have had a lot of amazing tests done that I can only dream of getting done due to the nature of the American health system.
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When do we know where the POIS grant is going to? They said November or December.
I'm holding my breath till it comes out.
If I had to guess, I would say within a week. NORD is pushing for "before Christmas".
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@eur79m,
Another compelling theory is that one of the herpes viruses is giving us issues, namely herpesvirus 6: http://en.wikipedia.org/wiki/Human_herpesvirus_6
It can be latent or dormant for a while, and any number of triggers can make it active. It has been connected to a nervous system problems. I am still learning about it, as is the entire scientific community.
The majority of humans are born with herpes viruses, just not all of them have symptoms. Might you have access to some tests or doctors who might know more about this? You have had a lot of amazing tests done that I can only dream of getting done due to the nature of the American health system.
So many possibilities! Sigh!
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POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!
Barry Komisaruk, PhD from Rutgers University in New Jersey, is the award recipient and the Principal Investigator for the first formal POIS study. He will be working in conjunction with an MD from Rutgers.
The research will focus on fMRI's in men with POIS, will include control subjects for comparison, and will examine brain function before, during and after orgasm.
The purpose of the study is to observe reactions and structural changes that may be occurring in the brains of POIS sufferers -- changes which explain the severe cognitive impairments of POIS, and also potentially explain the general physical reactions as a whole (pain, headache, severe fatigue, as examples).
If brain reactions are found, this will lead to determining the cause of POiS -- but more importantly -- may well elucidate treatments that are available now-- to counteract these changes.
Landmark study!!!! More to follow!!!!
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(http://i858.photobucket.com/albums/ab143/demografx/0F3CA958-398F-4358-BE6C-48C87BEE2564.jpg)
Available at Amazon. Focus: female orgasm
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(http://i858.photobucket.com/albums/ab143/demografx/528EC022-1FC1-4DDF-9AE7-C509DC5612EF_1.jpg)
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i can volunteer my brain and would be a willing participant in said study. i would even allow brain biopsy. seriously. use me! i have that cognitive destroying kinda POIS that ruins lives. good test material!
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http://www.cambridgebrainsciences.com/
wonder if this would be useful testing cognitive function before and after Orgasm
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i can volunteer my brain and would be a willing participant in said study. i would even allow brain biopsy. seriously. use me! i have that cognitive destroying kinda POIS that ruins lives. good test material!
Thanks, Defsync, we'll need volunteers!
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(http://i858.photobucket.com/albums/ab143/demografx/5E148451-F22A-40A0-9B66-7EAD0FA6372B.jpg)
Also available at Amazon.
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POIS GRANT AWARDED/ACCEPTED 5:00 PM EST THURSDAY EVENING!
Barry Komisaruk, PhD from Rutgers University in New Jersey, is the award recipient and the Principal Investigator for the first formal POIS study. He will be working in conjunction with an MD from Rutgers.
The research will focus on fMRI's in men with POIS, will include control subjects for comparison, and will examine brain function before, during and after orgasm.
The purpose of the study is to observe reactions and structural changes that may be occurring in the brains of POIS sufferers -- changes which explain the severe cognitive impairments of POIS, and also potentially explain the general physical reactions as a whole (pain, headache, severe fatigue, as examples).
If brain reactions are found, this will lead to determining the cause of POiS -- but more importantly -- may well elucidate treatments that are available now-- to counteract these changes.
Wow, that's amazing!. Thank you for informing us, demografx and Daveman. I am sure that his research will shed some light on POIS that could lead to an imminent and effective treatment for everyone affected.
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Thanks, Observer! :)
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Daveman and I have welcomed Dr. Barry Komisaruk to POISCenter -- via email -- and he replied immediately.
Daveman and I will very soon be posting specific information from Dr. K., hopefully within the next week or two.
THANK YOU EVERYONE FOR YOUR PATIENCE THESE LAST MONTHS! Just wanted to assure you all that everything is moving forward and as planned. This is a very exciting time -- the first formal, scientific POIS research is about to begin!
Happy New Year! :) :)
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Daveman and I have welcomed Dr. Barry Komisaruk to POISCenter -- via email -- and he replied immediately.
Daveman and I will very soon be posting specific information from BK, hopefully within the next week or two.
THANK YOU EVERYONE FOR YOUR PATIENCE THESE LAST MONTHS! Just wanted to assure you all that everything is moving forward and as planned. This is a very exciting time -- the first formal, scientific POIS research is about to begin!
Happy New Year! :) :)
Fantastic Demo!
Happy new year everyone!We are finally getting down to this with the best way!
Stay strong!
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This a good start to a new year. I am glad to have a Doctor on board!
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:) :) :)
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(http://i858.photobucket.com/albums/ab143/demografx/1ADDF2B2-CE2C-4DB4-A8C0-CA345DF974BD.gif)
Best wishes for everyone's POIS-free future!
Daveman
and
demografx
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So should we NOT correspond with this doctor individually? I certainly wouldnt mind emailing him my opinion on my take on the POIS movement and possible implications of said research, being positive and supportive of course in said correspondence =)
Josh
actually i want to let him know some of my theories so he has those to consider when he does his research, not that he has a lot of material already, but i still have a couple thoughts on POIS I know no one has ever expressed. not to mention im the only one who came up with the method for controlling dreams. altho I really dont know if that was ever successful for anyone else.....
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So should we NOT correspond with this doctor individually? I certainly wouldnt mind emailing him my opinion on my take on the POIS movement and possible implications of said research, being positive and supportive of course in said correspondence =)
Josh
actually i want to let him know some of my theories so he has those to consider when he does his research, not that he has a lot of material already, but i still have a couple thoughts on POIS I know no one has ever expressed. not to mention im the only one who came up with the method for controlling dreams. altho I really dont know if that was ever successful for anyone else.....
We are going to have a conference with NORD here this next week, which should shed more light on his actual plan and it's implications, and also let us know what sort of interface we can have with him.
Dr. Komisaruk has also asked that we post to help find volunteers. For this he will be sending us a text within the next week (I imagine) which would outline the guidelines, and hopefully a little more about the process, for this volunteer program.
So give us a little more time to find out exactly the route it is he'll be taking.
All applicants had to submit a specific approach, which implies a specific suspicion and desired final result. So this would probably mean that their direction is quite fixed and dedicated.
I remember a notice on a garage mechanics wall, that specified his fee:
$35/hr normal
$70/hr with customer assistance.
Under "Funding a POIS Research Program", I will open a thread to discuss things we would like the researcher to know. From that thread
we will try to get something put together that may help the Doctor fine-tune his research.
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THATS WHAT IM TALKING ABOUT DAVEMAN! Yeah man we slap down our theories and filter em down, man you never know then what a doctor can do with that information. One person might mention one chemical or thing to look at that wasnt thought of and BAMN holy crap they end up discovering something new. I'm really excited you guys pulled this off before I croaked lol.
One thing I've been paying attention to... since I use Lyrica sometimes after an unfortunate NE.... noting myself which drugs seems to "block" or counter certain symptoms of POIS. To a researcher, this can help them determine what receptors or chemicals in the brain are being affected by POIS. For instance (and I know this if for later mostly just throwin it out now since im exciteD) Lyrica --> " Pregabalin decreases the release of neurotransmitters including glutamate, norepinephrine, substance P and calcitonin gene-related peptide". So you know, considering how effective it is at countering the cognitive dysfunction of POIS, one of these 4 main effects might be a consideration.
And Im convinced 100% theres a link somehwere to Alzheimers. I have a capacity, when im deep in thought, to have a train of thought of something, develop it in my head, and then bamn I lose concentration and the whole thought train vanishes, and Im completely unable to recall. From glutamate wiki "Excitotoxicity due to excessive glutamate release and impaired uptake occurs as part of the ischemic cascade and is associated with stroke,[4] autism, some forms of intellectual disability, and diseases like amyotrophic lateral sclerosis, lathyrism, and Alzheimer's disease."
Oh okay, so excessive glutamate can cause memory dysfunction, and levels of it spike after orgasm. Maybe we have to much already? And the O increases it to a level that causes dysfunction. So that might explain why Lyrica which drops those levels, counteracts the cognitive dysfunction so well.
And would explain why Niacin works as well since Niacin is a cofactor in the conversion of glutamate back into glutamine. Thus lower your glutamate levels. Diagram here: http://themedicalbiochemistrypage.org/images/glutamate-glutamine-cycle.png
WHOA sorry didnt mean to start spouting theories right now, but I JUST came up with this one out of the blue as Im sitting here researching. You guys probably have already looked at all this on another thread lol. Regardless it just prompted me to buy 60 tabs of N-Acetyl-Cysteine 1000mg which supposedly lowers glutamate, and has been looked at for reducing milder versions of some POIS-like symptoms.
BUT THATS HOW US POISERS ROLL! You be in some thread, and you go off researching and just gotta write it down immediately just to get it out there.
itll be a wondrous experience to volunteer just for the oppurtunity to meet other real life POISers.
The hour is late. Thanks for your patience in reading my post lol.
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THATS HOW US POISERS ROLL!
THAT'S HOW WE ROLL!! (http://th06.deviantart.net/fs70/200H/i/2010/203/5/f/Ninja_Awesome_Smiley_by_E_rap.png)
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We are going to have a conference with NORD here this next week, which should shed more light on his actual plan and it's implications, and also let us know what sort of interface we can have with him.
What medium is this conference going to be on? This forum? Skype? Is it open to the rest of us?
Thanks Dave
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(http://i858.photobucket.com/albums/ab143/demografx/C5CBF016-BE27-4670-86CC-80BD215AA762.png)
OUR POIS RESEARCH HERO(ine)!!
THANKS A MILLION, STEF,
FOR BRINGING US TO THIS MAJOR HISTORIC POIS MILESTONE!!!!
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We are going to have a conference with NORD here this next week, which should shed more light on his actual plan and it's implications, and also let us know what sort of interface we can have with him.
What medium is this conference going to be on? This forum? Skype? Is it open to the rest of us?
Thanks Dave
We have been contacted by Dr. Komisaruk's group. They will be posting soon, explaining requirements for possible test participants, and giving a general rundown of what the testing involves.
Each participant AND applicant will need to fill out a form, and some of the information from thise form will provide a very good opportunity for you to highlight things that you think could be important in the testing.
I think once you hear what they are doing, you will be very enthiused with the route they are taking.
So the conference we were going to have, is postponed for now. The more direct connection from each one of you to the research team will be much more productive.
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This doctor [Barry Komisaruk] will explore our syndrome:
http://nwkpsych.rutgers.edu/~brk/
(http://i858.photobucket.com/albums/ab143/demografx/D12AE50E-2F87-48E9-BFE3-492DB2BCFD37.jpg)
Dr. Barry Komisaruk,
Neuroscientist
Our POIS Grant's Principal Investigator
edit -- I put up a different photo above. The previous page photo was already duplicated in Kima's link that I quoted above.
Demo
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(http://i858.photobucket.com/albums/ab143/demografx/FC6DBA57-3E19-4CA5-A5C9-36923AB414AE_1.jpg)
Dr Pooja Lakshmin, MD
POIS Study Co-investigator
(works closely with Dr. Komisaruk and his team at The Orgasm Lab). Daveman and I got a very warm email that clearly indicates her enthusiasm for studying POIS! (I have yet to meet an MD, *many* whom I visited about POIS, to show the slightest enthusiasm!). Same goes for our impression of Dr. K: apparently, he's a gentleman and a scholar of the highest order.
Pooja graduated summa cum laude from the University of Pennsylvania with a Bachelor of Arts in Neuroscience and Women’s studies. During that time she did clinical research at the sleep and chronobiology laboratory at The hospital of the university of Pennsylvania, as well as community outreach in women’s health projects in rural India. She went on to study medicine at Jefferson Medical College in Philadelphia, where she earned her MD. During medical school she volunteered at a free standing community clinic that provided free medical care to the largest homeless shelter in Philadelphia.
She moved to California in 2010 for her Psychiatry residency training at Stanford hospital, where she worked on inpatient acute psychiatric units & outpatient clinics with patients who suffered from severe
mental illness, including working with patients with addiction & trauma. She received extensive training in psychopharmacology as well as various therapy modalities.
She left Stanford in 2012 to do neuroscience research at Rutgers University in New Jersey and is now working at the Orgasm lab with expert neuroscientist Barry Komisaruk PhD, where they are using fMRI technology to map the sensory pathways of the female genitalia in the brain and nervous system as well as to establish the sequence of brain activity during orgasm and orgasmic meditation.
Her clinical interests lie in treating women who suffer from trauma, PTSD, chronic genital pain & low sex drive.
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Article about Rutgers Orgasm Lab
http://www.nj.com/insidejersey/index.ssf/2010/04/science_consciousness_and_the.html
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THATS HOW US POISERS ROLL!
THAT'S HOW WE ROLL!! (http://th06.deviantart.net/fs70/200H/i/2010/203/5/f/Ninja_Awesome_Smiley_by_E_rap.png)
(http://i858.photobucket.com/albums/ab143/demografx/8A15F1E8-B962-4A35-9AF9-2B7AF1AC1E24.png)
.....until NOW! :) ;D
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Article about Rutgers Orgasm Lab
http://www.nj.com/insidejersey/index.ssf/2010/04/science_consciousness_and_the.html
"The Rutgers neuroscientist analyzes brains in their most enthusiastic state, hoping to strengthen women's orgasms and aid the climax-challenged."
I wonder if I should mention when I fill out the form that I can have an orgasm at will just by thinking about it. In case anyone is wondering, continually practicing lucid dreaming control can lead to this ability.
NOT THAT I CAN ENJOY THIS TALENT lol
I look forward to signing up for testing. Of course I dread actually having to have an orgasm for any reason, especially if its multiple times in close proximity timewise. But..... as a good friend of mine said "what happens when the next 12 year old boy discovers he has POIS and has no support network, or worse yet kills himself?" That pretty much ended the discussion on whether I should or shouldnt sign up. lol
You guys have my contact info. I will check this site daily for when the time comes to sign up, but if for some reason something happens to where I cant check the site, and you dont see me sign up within a few days, PLEASE contact me by phone to remind me or ensure I know about it. We are currently under level 3 snow emergency and things are gonna be nuts around town for next couple days lol.
I feel my cowardice in not bringing POIS into the media limelight by going on Discovery Channel CAN BE REDEEMED by offering myself as a suitable guinea pig.
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i got this..........
(http://i178.photobucket.com/albums/w279/Morbidosis/Knotted-Rolls-300x225.png)
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Good one, Defsync! ;D
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From the Article about Rutgers Orgasm Lab
http://www.nj.com/insidejersey/index.ssf/2010/04/science_consciousness_and_the.html
(http://i858.photobucket.com/albums/ab143/demografx/43C7D892-97C6-4DE6-9E07-B383E40EF5B6.jpg)
The volunteer raises her hand to indicate that she is having an orgasm.
Dr. Barry Komisaruk, our POISCenter Grant's Rutgers' based neuroscientist and his team do a brain scan of a 31 year old female volunteer while she masturbates in an MRI machine at the lab in Newark.
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functioning fMRIs I believe should be done of the hippocampus at periodic times after orgasm, starting at 30min, 3 hours, 6 hours then 12 hours. another fMRI every 12 hours for 5 days. it is the main structure for cognitive memory functions. im just making a note of it here so i dont forget. my theory is it will show a major drop in function after 12-24 hours, lowest levels peaking down at 48 hours, then slowly returning back to normal over the next 3-5 days. If that ends up being the case, I think that alone would trigger a media blitz once the data is scrubbed and released to the public, and open up more doors for us.
also volunteers are gonna have to be self aware of their ability to have an orgasm. a person can have an orgasm that is short or long, where only a small amount of fluid released or a large amount.
the doctors need to be careful with volunteers who are not comfortable and aware of their own capacity for orgasming. a simple "orgasm" can range in the amount of endorphins and semen released. if the person in the fMRI machine has a small orgasm, and that fact is not noted, the data from such an orgasm would show less dysfunction than a volunteer who was able to ensure a full deep orgasm that released far more.
why is it when i start to post on here my brain takes off almost without me. sigh. i still love you guys even tho I know you have to put up with my crazy.
in other news we are being buried under feets of snow. level 3 snow emerg atm. i was outside shoveling and it was almost whiteout at times, which is alright if you have a Kate Beckensail on hand lol
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Sorry guys, but you know at least the approximate date of commencement of the research? That is to say, a week or 2 months
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Sorry guys, but you know at least the approximate date of commencement of the research? That is to say, a week or 2 months
There is an announcement to come, from the medical team. They should be posting personally here on the site. This announcement should
clear up a lot of questions. I hope the announcement comes this week.
They have actually begun, in the sense that they are already preparing to coordinate with volunteers (many of you here). But the actual research will take time to get everyone together and organized, with all the preparation etc.
One of the doctors who contacted us, and who will probably make the announcement, has expressed their enthusiasm to begin this project. It is as interesting as it is challenging, and very much in line with what they do regularly.
Thanks for your interest. Things should be forthcoming very shortly.
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functioning fMRIs I believe should be done of the hippocampus at periodic times after orgasm, starting at 30min, 3 hours, 6 hours then 12 hours. another fMRI every 12 hours for 5 days. it is the main structure for cognitive memory functions. im just making a note of it here so i dont forget. my theory is it will show a major drop in function after 12-24 hours, lowest levels peaking down at 48 hours, then slowly returning back to normal over the next 3-5 days. If that ends up being the case, I think that alone would trigger a media blitz once the data is scrubbed and released to the public, and open up more doors for us.
also volunteers are gonna have to be self aware of their ability to have an orgasm. a person can have an orgasm that is short or long, where only a small amount of fluid released or a large amount.
the doctors need to be careful with volunteers who are not comfortable and aware of their own capacity for orgasming. a simple "orgasm" can range in the amount of endorphins and semen released. if the person in the fMRI machine has a small orgasm, and that fact is not noted, the data from such an orgasm would show less dysfunction than a volunteer who was able to ensure a full deep orgasm that released far more.
why is it when i start to post on here my brain takes off almost without me. sigh. i still love you guys even tho I know you have to put up with my crazy.
in other news we are being buried under feets of snow. level 3 snow emerg atm. i was outside shoveling and it was almost whiteout at times, which is alright if you have a Kate Beckensail on hand lol
OK, good suggestions these kind of notes should be posted in the thread which we hope to resume and show to the researchers. They will be members of the forum, so should have access to such information. Let's try to put everything in one place for them..
http://poiscenter.com/forums/index.php?topic=1220.0
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The official study name/title of our Rutgers
Orgasm Lab's
research of POISCenter volunteers:
"Is POIS a Case of Vagal Dystonia?:
An fMRI Brain Activity Analysis"
Definition of Dystonia
Dystonia is a general term used to describe a range of muscle disorders, including extended muscle spasms, contractions, tremors and other involuntary movements. The patient has twisting body movements, tremor and unusual or awkward postures. Dystonia may affect the whole body, or only a specific area or region of the body. Symptoms are often linked to repetitive or prolonged and strenuous tasks, such as writer’s cramp, or it may be observed in association with the taking of certain medications. Dystonia is considered to be a neurological condition.
More Information Online:
http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php
THE VAGUS NERVE
The vagus nerve is the longest of all our cranial nerves and creates a direct connection between our brain and our gut. Vagus means "wandering" and this important nerve travels from the brain through many parts of the body, including the heart, lungs, stomach and ears. Among its functions is to provide vital information between the brain and the gut on how the body is digesting food. It also sends messages to the gut to contract the stomach and intestines to aid in this process.
The vagus nerve has also been shown to carry signals initiated by bacteria. Staphylococcus can attack the vagus nerve and induce vomiting. Salmonella infections have been shown to affect brain activity, a connection lost when the vagus nerve is severed.
(http://i858.photobucket.com/albums/ab143/demografx/F6805891-CF1E-4592-A578-CDFEB164C516.gif)
The Vagus Nerve will be the focus of the fMRI's. The Vagus nerve is hugely encompassing and connects from the brain to remote areas such as the digestive system as well as a large number of potential POIS-trouble spots!
(http://i858.photobucket.com/albums/ab143/demografx/C2ECDE49-9B2D-43D2-9DF2-ED7D32AF20E6.jpg)
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TO ALL POIS FORUM MEMBERS:
While we are waiting, we posted some VERY GENERAL information about Vagus, The Orgasm Lab, Team Members, etc. above, largely compiled from the Internet.
Please wait for SPECIFICS from the POIS Medical Team.
Daveman and I are not physicians, or Vagus Nerve experts, so please hold your questions till the Rutgers Team gets more involved.
Thank you for your patience!
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THANKS A MILLION, STEF,
FOR BRINGING US TO THIS MAJOR HISTORIC POIS MILESTONE!!!!
Yes, thank you Stef so much for all your hard work and help. It was very nice of you to stick with us and make sure we reached this important milestone! You cared for us like a mother would, and we thank you so much for it! I wish you all the very best during this new year and many more after that! Thank you! :)
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(http://d3u67r7pp2lrq5.cloudfront.net/product_photos/1251054/maki_original.jpg)
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Wow, Prancer! ::)
I'm getting hungry looking at your post :)
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THANKS A MILLION, STEF,
FOR BRINGING US TO THIS MAJOR HISTORIC POIS MILESTONE!!!!
Yes, thank you Stef so much for all your hard work and help. It was very nice of you to stick with us and make sure we reached this important milestone! You cared for us like a mother would, and we thank you so much for it! I wish you all the very best during this new year and many more after that! Thank you! :)
You're very welcome, Prancer!
This did bring out my maternal instincts -- you're correct! :-)
It was an honor to help -- I really do mean that.
Stef
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(http://i858.photobucket.com/albums/ab143/demografx/1E1767A2-EC46-4646-994C-2A38F10C4DE2.jpg)
German edition of one of Dr. K's books.
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edit - I changed the titles of the 2 Rutgers women on the POIS Study Team (see my previous photo-based posts. This comes from NORD.
The complete list of members for the POIS investigative team is as follows:
-Barry R. Komisaruk, Ph.D., Principal Investigator
-Pooja Lakshmin, M.D., Co-investigator
-Dr. Eleni Frangos, Ph.D Project Collaborator
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(http://i858.photobucket.com/albums/ab143/demografx/0F3CA958-398F-4358-BE6C-48C87BEE2564.jpg)
Available at Amazon. Focus: female orgasm
BOOK REVIEW
Sex fascinates us all and now it seems that everyone has a view. The media abounds with advice about sex from doctors, psychologists and therapists who jostle for recognition. But despite the surfeit of advice there is little science. The problems of taboo and censorship have been replaced by one of validity. This book provides information from the best available evidence. Talk of sex being as strenuous as walking up stairs or walking a mile does not pack the same punch as how many patients have a heart attack ‘in the saddle’. Even in the priapic, post-Viagra age the figure seems low: 1.5% of 1700 cited in the chapter titled ‘are orgasms good for your health’.
The authors are a professor of psychology, of nursing, and the head of a laboratory. They have proceeded from definition to physiology and pathophysiology, and the effect of prescribed and elicit drugs. They review the research into the endocrinology and the neurology of sex in both the intact and damaged brain. The information from imaging is assessed. All the while the authors have not strayed beyond what is in the literature.
The instruction does not crowd out the entertainment. They have an eye for the intimate when a researcher’s erection, induced by a self-administered alpha blockade, ‘is entirely undiminished by concentration on exacting intellectual tasks... I took an urgent and worrying telephone call without losing the erection’. One presumes the caller was unaware.
The authors should be congratulated on taking the trouble to produce a readable comprehensive account of the literature on orgasm. All psychosexual clinics will need to have a copy as well as anyone who advises others about psychosexual problems.
© 2007 Royal College of Psychiatrists
The British Journal of Psychiatry (2007) 191: 369 doi: 10.1192/bjp.
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MORE REVIEWS
http://www.amazon.com/gp/aw/d/080188490X/ref=mw_dp_mdsc/186-5422947-8278540?dsc=1
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I must admit I don't know what to think about this attack strategy. It is really surprising.
The draw you posted with multiple connections (throat, heart, intestine...) is comforting and if they chose this point of attack they probably have good reasons. And I CLEARLY have muscles fasciculation after ejaculation, that's a good point. Buzz ear too (easy connection with this theory).
But some connections are very strange. The prevalence of Pois is >99% for men. What about testosterone ?
What about delays ? (some minutes after ejaculation to 2,3,4, 5 .... 10 days.)
What about cold feeling after ejaculation ? What about sugar/insuline sensitivity ?
What about dopamine (and dopamine-family neurotrasmitters) in sperm ?
And mainly what about concentration/derealisation problem, which is the main symptom of lot of Poisers ?
To be clear, up to know I saw the dystonic factor as a consequence and not as a cause.
I'm doubtful, let's see the complete analysis :)
Anyway, it's really time to follow John's diet (fava beans = L-Dopa) :)
Some people report a half cup (4 ounces, 112 grams) of fava a day, or even every other day, gives good results.
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I must admit I don't know what to think about this attack strategy. It is really surprising.
The draw you posted with multiple connections (throat, heart, intestine...) is comforting and if they chose this point of attack they probably have good reasons. And I CLEARLY have muscles fasciculation after ejaculation, that's a good point. Buzz ear too (easy connection with this theory).
But some connections are very strange. The prevalence of Pois is >99% for men. What about testosterone ?
What about delays ? (some minutes after ejaculation to 2,3,4, 5 .... 10 days.)
What about cold feeling after ejaculation ? What about sugar/insuline sensitivity ?
What about dopamine (and dopamine-family neurotrasmitters) in sperm ?
And mainly what about concentration/derealisation problem, which is the main symptom of lot of Poisers ?
To be clear, up to know I saw the dystonic factor as a consequence and not as a cause.
I'm doubtful, let's see the complete analysis :)
Anyway, it's really time to follow John's diet (fava beans = L-Dopa) :)
Some people report a half cup (4 ounces, 112 grams) of fava a day, or even every other day, gives good results.
I feel much like you b_jim, for me it is almost certain that it is a consequence rather than a cause.
My sense, and we really won't know until we hear from them directly, is that their study goes much beyond the pure dystonia factor.
fMRIs can produce incredible information. It is not necessary to use an fMRI to show vagal dystonia, but the fMRI can bring out deep and far
reaching related information.
At the very least, the study will produce unequivocal information as to cause and effect, in a controlled study (people with and without POIS), which would lead to unfolding the root cause. Nobody will be able to say that POIS is bunk!
My feeling is that brain effects during the study and throughout the differing phases will go a long way to pointing out the likely cause.
I had a short conversation with Dr. Pooja Lakshmin, where she mentioned that they will be posting shortly to the forum, with information about the program and about recruitment of test subjects. From the little that she said, I am confident that they are very interested in knowing all of the details of POIS, symptoms, onset, progression, remedies, histories, everything. So I am much more confident than I was that this program will produce results.
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There are some forms of dystonia like Dopamine-responsive dystonia (or Segawa's disease) which seems to have good improvement with l-dopa.
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There are some forms of dystonia like Dopamine-responsive dystonia (or Segawa's disease) which seems to have good improvement with l-dopa.
We have had a response from the research team, and they hope to write up a general introduction and guide for those who will be interested in being part of the testing. This should happen tomorrow or in the next couple of days.
I expressed concerns for the cognitive aspects, and they indicated that they will incorporate this in their testing.
A note to everyone, they will be reading the thread Things we would like to be able to tell Dr. Komisaruk (http://poiscenter.com/forums/index.php?topic=1220.0) , so post over there to express your concerns and desires. This is not to say that they can do everything, but it will give a chance to uncover things that may not be presently known.
As in any Dr. patient relationship is is important to know what the patient feels.
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Hi dave and demografx, thanks for good news.
I am very keen to help research with my own excperence with POIS. I have many MRI- files with POIS time and I can upload them. Please ask, maybe we can send all information straight to the POIS medical team. English is not my native language, but I am ready to write my personal story, living with 30 years with POIS.
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It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.
As far as I know we can explain very well mechanism of all neurovegetative related diseases but we dont know how to cure them ; it's more like a symptoms than a disease. All we do is interfering in the mechanism to slow down symptoms ; My doc told me a while ago that I had neurovegetative dystonia and the cure is......benzodiazepine....great...I guess L dopa is neither the kind of meds we want to use long term.
As the described dystonia(POIS) is clearly not motor related(who has motor problem here ?), I guess Dr Komisaruk's is talking about some form of neurovegetative dystonia :
http://www.ncbi.nlm.nih.gov/pubmed/9394265
The question is what if the answer to the question : "Is POIS a Case of Vagal Dystonia?" is yes ?
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It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.
As far as I know we can explain very well mechanism of all neurovegetative related diseases but we dont know how to cure them ; it's more like a symptoms than a disease. All we do is interfering in the mechanism to slow down symptoms ; My doc told me a while ago that I had neurovegetative dystonia and the cure is......benzodiazepine....great...I guess L dopa is neither the kind of meds we want to use long term.
As the described dystonia(POIS) is clearly not motor related(who has motor problem here ?), I guess Dr Komisaruk's is talking about some form of neurovegetative dystonia :
http://www.ncbi.nlm.nih.gov/pubmed/9394265
The question is what if the answer to the question : "Is POIS a Case of Vagal Dystonia?" is yes ?
Do you mean what if the answer to the question is "no"?
Anyways, also a concern of mine, but I have been greatly relieved after speaking with them recently. They are very determined to establish a good POIS profile first, and are also interested in taking the many and serious cognitive aspects into account as well.
They should be contacting the forum quite shortly. If not tomorrow, at least before the end of the week... but sooner than later.
Please voice these concerns on the thread to Dr. Komisaruk. The best way of being heard.
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[Daveman] They are very determined to establish a good POIS profile first, and are also interested in taking the many and serious cognitive aspects into account as well.
They should be contacting the forum quite shortly. If not tomorrow, at least before the end of the week... but sooner than later.
[/quote]
All eagerly awaiting initial contacts from Dr. Komisaruk's team ?
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Daveman and I had a Skype conference today with Barry and Pooja.
Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed :)
There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.
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Hello defysync
You have done a great job by volunteering . I thank you
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Daveman and I had a Skype conference today with Barry and Pooja.
Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed :)
There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.
I think FMRI is a good first step, if we can prove that there are physiological changes in the brain of poisers, than trying to find the cause can be the next step.
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Has anybody here done fMRI in the past ? What was his results ? With so intense cognitive symptoms wasnt it obvious to have an fMRI scan ?
Unless someone did and the results showed no significant changes compared to normals..
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I did 2 regular MRI showing nothing particular. fMRI detect correlation between brain activity and changes in blood flow ; Definitely interesting to explore that as orgasm(and stress/anxiety) are connected to blood flow in particular through mediation of parasypathetique nervous system and other part of CNS.
I guess that researcher want to prove that there is an abnormally high nervous response of the CNS to orgasm(and probably stress).
It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.
As far as I know we can explain very well mechanism of all neurovegetative related diseases but we dont know how to cure them ; it's more like a symptoms than a disease. All we do is interfering in the mechanism to slow down symptoms ; My doc told me a while ago that I had neurovegetative dystonia and the cure is......benzodiazepine....great...I guess L dopa is neither the kind of meds we want to use long term.
As the described dystonia(POIS) is clearly not motor related(who has motor problem here ?), I guess Dr Komisaruk's is talking about some form of neurovegetative dystonia :
http://www.ncbi.nlm.nih.gov/pubmed/9394265
The question is what if the answer to the question : "Is POIS a Case of Vagal Dystonia?" is yes ?
Actually, I meant "yes" ;
From my limited medical knowledges, my understanding is there is no cure at all for this kind of disease and it's actually considered as secondary to an underlining cause(auto immune disease, lyme, parkinson, genetic related disease, generalized anxiety, etc, etc) ; I believe answering yes to the research interrogation would be like knowing that POIS is a case of migraine or a case of CFS.
Hope I'm wrong
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LAPOISSE, your post is perfect for posting at the thread Daveman created for Dr Komisaruk.
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Yes, at least there will be evidence that there really is a disorder and change in the brain activity.
But couldnt these changes be just symptoms of the underlying cause, our real problem ?
FOR ME, stess/anxiety definetely affects POIS, meaning that its like a sub-cause of orgasm that can cause symptoms or make your current symptoms worse.However, this increase intensity of symptoms is only temporary and after some time you return to the state before the stress hit.
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It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.
This is the scientific method:
(http://www.cdn.sciencebuddies.org/Files/5084/7/2013-updated_scientific-method-steps_v6_noheader.png)
When you refer to "some kind of conclusion," I think you are confusing this with their hypothesis. There is no title of the study, I don't see why they would need one?? There will be a title to their paper, that they publish once they, test, experiment, analyze then communicate the results. And, they have the freedom to change their hypothesis during testing! If the hypothesis is not being backed up, they can definitely change approaches in this study!
I don't see how fMRI has much of any chance of gettting us 0 progress... this is one of the most knowledgeable researchers in the field. We might know a lot ourselves, but we havn't been able to fix each other. I think an outside, expert evaluation is needed, and that's exactly what we are getting.
Waldinger may be a hero is some respects, but who is to say this is autoimmune? It is still inconclusive. You are right in suspecting that Komisurak is looking to find out if there is pathology in our nervous system, but I am puzzled why there is so much worry that looking at fMRI will be a waste. The brain is the one best place to look to find out what is going on throughout the body. The brain responds and depends on feedback from the nerves.
There are many possibilities here, and I think the waste would be to rush. We are all wanting this fixed. Now. Right now. But the research that we have "bought" with all our money doesn't care about "right now." It is careful, methodical, and evidence based. We have very little evidence that any of our own pet theories work, but Dr Komisurak has LOTS of evidence to back up his hypothesis. Now, he should know we have a lot of knowledge ourselves, and should listen carefully to us. But we should listen carefully to him. And be patient! We already have a doctor doing research on the autoimmune side of things with Waldinger, and he has not delivered. Let him keep trying. But we have a world class neurologist now, and that gives us a new weapon against POIS.
The brain is the most complicated thing in the known universe, and now we have an expert who studies it. I think we should give him our attention! He may not find "the cure", but I have a STRONG suspicion he will find something important. And that is what we should expect. If each of us wants to find the cure our own way, we should raise our own money and find our own NORD, so we can do exactly what we want. But I'm glad it didn't happen this way! NORD spent most of a YEAR deciding who would best help us, looking at a variety of specialist and scientists. I think they have set us up for success.
It's too early to start criticizing... please, lets give the Dr. a chance, and PLEASE give him a warm welcome when he starts posting. Last thing I'd want to see is a bunch of critics critiquing his hypothesis before he even gets to talk to us directly... I hope I'm saying the obvious here!
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Nightingale,
I Agree 100% with everything you said ans thank you for the scientific method scheme ; it make sense. Nord research is the best thing we can do right now and we'll learn a lot about our condition. I'm not criticizing, I just share my opinion regarding CNS related disease and dystonia as I've been diagnosed for neurovegetative dystonia years ago which is, as I understand very close to the Dr Komisurak's hypotethis regarding POIS.
Of course, we'll give a warm welcome to Dr Komisurak ; We have a lot of thing to learn from him...and maybe he has a little ti learn from us as expert Poiser experiencer
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Additionally I think it would be a pity not to profit from some members point of view especially Kurtosis who has a good knowledge about all that and who is actually cured. After discussing with many Poisers and my personal experience, I really think that digestion is the key ; If digestion is impaired, absorption of vitamins, mineral, amino acid, etc is impaired leading potentially to many problems with CNS probably one of the most potent of them. Observing and confirming that something is wrong in our brain is probably very useful, understanding why it's wrong would be the Graal.
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To corroborate some of the discussion on digestion and Thyroid. I've been (along with Demo and some others) trying to live with this and self-helping with POIS "cures", for 40 years.
I can confirm in the early days of my POIS back in the 70's, Thyroid problem was a major component of the illness for me.
For the duration of my POIS, I have also had a digestion problem that when food hits my stomach, there is an automatic nervous tension response which forces me to chew the inside of my (mouth) gums. I have had this reaction since teen years.
I am NOT cured of POIS, but have made some very slow progress to feel a bit better each decade.
My most notable progress or leaps (from the 100's of things, therapies, ologies and diets I have tried) are:
- 10 years of taking a high grade St John's Wort.
- Removal of alcohol, most dairy foods and wheat/gluten.
- Taking herbal teas for years.
- In the last few months, the positive impact that Niacin has had on some occasions for me (although not all occasions). I am still trying Niacin flush.
I don't have a scientific mind, and struggle to understand and interpret all the myriad of new ideas being presented here and on NSF, but I am very impressed with all your knowledge and thinking guys, and agree here with what Nightingale is saying. I am sure Dr. K (with his knowledge of the brain and orgasm) has a good reason to point the research in the direction he proposes.
I will endeavour to contribute by travelling 6K miles at my cost to hopefully provide my own fMRI to the cause. I don't wish this on any 20 year old struggling with this.
Daveman has said the research team seem keen to "establish a good POIS profile". Also suggesting "they are very interested in knowing all of the details of POIS, symptoms, onset, progression, remedies, histories, everything". With this in mind, there must be some format (the research team could advise us on) in which we can contribute our knowledge and highlights of trends and symptoms, what's helped etc, but in a manner that they (the research team) can analyse and find trends, rather than in free hand contributions on the board, which can't then be analysed easily. (D & D), would this be an item for agenda on next Skype call you have with the team? Could we then be collating this data appropriately for later use, as we await Rutgers approval for fMRI's. Can we thus add some value to the research in this way, to help all get the most out of their ultimate hypotheses and outputs from the research.
It is possibly unhelpful to have unstructured feedback and information presented to researchers, who I think like structure and data that can be validated and that can potentially form part of this evidence based approach. Am possibly stating the obvious here or could we repeating what others suggested.
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Their announcement should be forthcoming here VERY shortly. It should include some information as to procedures, requirements, and much of what you indicate.
They can't get started actually testing until they get official approval of the test program from their local facility, which could take 2 months. In that time we can get all formats for interchange of information in order, and preparations for "volunteers etc."
In the meantime it never hurts to share here with them in the place allocated for that on the forum (http://poiscenter.com/forums/index.php?topic=1220.0).
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Thanks for re-clarifying forthcoming announcement and what they will be doing.
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It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.
This is the scientific method:
(http://www.cdn.sciencebuddies.org/Files/5084/7/2013-updated_scientific-method-steps_v6_noheader.png)
When you refer to "some kind of conclusion," I think you are confusing this with their hypothesis. There is no title of the study, I don't see why they would need one?? There will be a title to their paper, that they publish once they, test, experiment, analyze then communicate the results. And, they have the freedom to change their hypothesis during testing! If the hypothesis is not being backed up, they can definitely change approaches in this study!
I don't see how fMRI has much of any chance of gettting us 0 progress... this is one of the most knowledgeable researchers in the field. We might know a lot ourselves, but we havn't been able to fix each other. I think an outside, expert evaluation is needed, and that's exactly what we are getting.
Waldinger may be a hero is some respects, but who is to say this is autoimmune? It is still inconclusive. You are right in suspecting that Komisurak is looking to find out if there is pathology in our nervous system, but I am puzzled why there is so much worry that looking at fMRI will be a waste. The brain is the one best place to look to find out what is going on throughout the body. The brain responds and depends on feedback from the nerves.
There are many possibilities here, and I think the waste would be to rush. We are all wanting this fixed. Now. Right now. But the research that we have "bought" with all our money doesn't care about "right now." It is careful, methodical, and evidence based. We have very little evidence that any of our own pet theories work, but Dr Komisurak has LOTS of evidence to back up his hypothesis. Now, he should know we have a lot of knowledge ourselves, and should listen carefully to us. But we should listen carefully to him. And be patient! We already have a doctor doing research on the autoimmune side of things with Waldinger, and he has not delivered. Let him keep trying. But we have a world class neurologist now, and that gives us a new weapon against POIS.
The brain is the most complicated thing in the known universe, and now we have an expert who studies it. I think we should give him our attention! He may not find "the cure", but I have a STRONG suspicion he will find something important. And that is what we should expect. If each of us wants to find the cure our own way, we should raise our own money and find our own NORD, so we can do exactly what we want. But I'm glad it didn't happen this way! NORD spent most of a YEAR deciding who would best help us, looking at a variety of specialist and scientists. I think they have set us up for success.
It's too early to start criticizing... please, lets give the Dr. a chance, and PLEASE give him a warm welcome when he starts posting. Last thing I'd want to see is a bunch of critics critiquing his hypothesis before he even gets to talk to us directly... I hope I'm saying the obvious here!
Nightingale,
What a great post!!!
Stef
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I second that (e)motion, Stef! ;D
GREAT SCHEMATIC, NIGHTINGALE!!!!!
:) :) :)
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[Daveman] They are very determined to establish a good POIS profile first, and are also interested in taking the many and serious cognitive aspects into account as well.
They should be contacting the forum quite shortly. If not tomorrow, at least before the end of the week... but sooner than later.
All eagerly awaiting initial contacts from Dr. Komisaruk's team ?
(http://poiscenter.com/forums/index.php?action=dlattach;topic=426.0;attach=293)
(http://i858.photobucket.com/albums/ab143/demografx/FE73A7EE-DCDE-4681-950C-EC2518D5ADB4.gif)
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This is just ONE (1) example -- it is NOT necessarily a POISCenter recommendation -- of numerous programs that might help you consider traveling to and participating in the Newark POIS Studies:
(http://i858.photobucket.com/albums/ab143/demografx/9887B0C4-6D8F-43DA-8339-4195C4CA369A.png)
http://www.patienttravel.org/
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Thanks Demo for pointing that out.
I would love to participate to the research and the fMRI tests even though i have a very busy year with school and the distance of course being so big.
It would be a huge experience and a chance to get to know with each other and discuss live.
This is our big chance guys! What we were waiting for all this time!
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This is just ONE (1) example -- it is NOT necessarily a POISCenter recommendation -- of numerous programs that might help you consider traveling to and participating in the Newark POIS Studies:
(http://i858.photobucket.com/albums/ab143/demografx/9887B0C4-6D8F-43DA-8339-4195C4CA369A.png)
http://www.patienttravel.org/
I will add MEGABUS and SPIRIT AIRLINES has sweet deals especially when planning ahead.
-
CertainlyPOIS, thank you! Very helpful to know all the options getting to Newark!
I'm sure we'll see more about it, especially after the University approves fMRI's of our POIS condition.
-
I will add [cost-effective patient travel to Newark]
1. MEGABUS
and
2. SPIRIT AIRLINES
has sweet deals especially when planning ahead.
-
All eagerly awaiting initial contacts from Dr. Komisaruk's team ?
The research group at Rutgers University-Campus at Newark has just received a grant from the National Organization of Rare Diseases (NORD) to characterize the physical and cognitive symptoms of POIS and test for possible vagus nerve involvement. Upon making all the necessary preparations for the study (which will take approximately 2 months) we will post here a detailed description of the research procedures and a
consent form for your possible participation. In the meantime, if you have questions, please feel free to contact us.
Pooja Lakshmin, MD plakshmin@psychology.rutgers.edu
Barry R. Komisaruk, Ph.D. brk@psychology.rutgers.edu
[cross-posted from Rutgers Research Announcement]
http://poiscenter.com/forums/index.php?topic=1225.msg11331#msg11331]
-
FROM NORD
"Cheers to 2014!!!
Since your last grant we have a donation of $320.00 from April 1 - Dec 31, 2013
Hope this helps
Kind Regards,
Cecilia Hall
Accounts Receivable Coordinator
National Organization for Rare Disorders (NORD) "
-
(http://i858.photobucket.com/albums/ab143/demografx/F78E1E23-08C1-4BAF-859F-9931C7C659E7.jpg)
-
Daveman and I had a Skype conference today with Barry and Pooja.
Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed :)
There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.
I think FMRI is a good first step, if we can prove that there are physiological changes in the brain of poisers, than trying to find the cause can be the next step.
Laurac, you're a longtime member and one of our most medically sophisticated members, so...THAT'S GOOD NEWS!! :)
-
Daveman and I had a Skype conference today with Barry and Pooja.
Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed :)
There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.
I think FMRI is a good first step, if we can prove that there are physiological changes in the brain of poisers, than trying to find the cause can be the next step.
Laurac, you're a longtime member and one of our most medically sophisticated members, so...THAT'S GOOD NEWS!! :)
This is fantastic!
-
There are some forms of dystonia like Dopamine-responsive dystonia (or Segawa's disease) which seems to have good improvement with l-dopa.
Interesting, b_jim!
Maybe this is a hopeful early clue that there _IS_ a solid way out of this miserable condition.
For everyone!!!
-
(http://i858.photobucket.com/albums/ab143/demografx/44F53990-FDC9-4B83-BAB9-C1FC525EBD70_1.jpg)
Seems like males are easier to study than females at Rutgers.
4,000 _less_ nerves in men.
Maybe that's why women's orgasms are often described as more intense and complex than men's.
As shown above, the clitoris has 8,000 nerves, while the penis has "only" ( ;D) half as much: 4,000 nerves!
-
Daveman and I had a Skype conference today with Barry and Pooja.
Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed :)
There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.
I think FMRI is a good first step, if we can prove that there are physiological changes in the brain of poisers, than trying to find the cause can be the next step.
Laurac, you're a longtime member and one of our most medically sophisticated members, so...THAT'S GOOD NEWS!! :)
This is fantastic!
I am actually part of a research team right now that is studying diabetic foot care/ulcers. Although, I would rather be researching POIS!
-
Thanks again, Laurac!!
It's been an honor and pleasure to team with you all these years!
Demo
-
(http://i858.photobucket.com/albums/ab143/demografx/1E935C2B-5CE2-4A6A-A6D4-F707FAA36FC3_2.jpg)
I'm not too sure if POISCenter wholeheartedly agrees with this
sentiment mistake!
(http://i858.photobucket.com/albums/ab143/demografx/photo-14.gif)
-
Thanks again, Laurac!!
It's been an honor and pleasure to team with you all these years!
Demo
THE SAME TO YOU DEMO!
-
(http://i858.photobucket.com/albums/ab143/demografx/65E18676-6579-4CD4-AA00-4B296A2E55D4_1.png)
For most of us, this means....PAIN/AGONY!
:)
-
Support or advice - Niacin Flush.
I'm one of the community here continuing a trial of Niacin. This is having had some initial very positive impacts.
I am still hoping that it may continue to help me and others, and for the research to clearly identify how it's action is related to POIS. The theories around vasoconstriction people speak about here and at NSF is interesting.
I don't want to abandon Niacin, but want to be sure there isn't any harm to Immune system or other organs, using it for POIS in limited dosage.
I had been taking the 100 MG of Flush Niacin just once a week, whether with or without an Orgasm.
Up toward the year end, I felt comfortable using it. However, I am wondering if there are some side effects (I have been getting), that others may have advice on. I'd like to continue safe treatments only and use Niacin safely to limit POIS impacts. Am sure others think the same with what they also experiment with.
Here's what happened.
I was off for 2 weeks over the holiday period in December, so I decided to take Niacin more often, I took the Flush 100 MG every two to three days for a week.
Usually, about an hour after taking Niacin, (even without O) experiencing the flush, I feel quite well and some symptoms recede, and in particular I usually feel more open and energised. The next day, I usually feel really wrecked, run down, tired, my body runs cold, and then these symptoms kind of clear away on the following day, which leaves me a bit better (than pre-Niacin dose) and fairly stable for a few days.
A month back however, after a week of taking the 3 doses of Niacin in succession, I got a very bad flu for three weeks (worst in years) with a really heightened over-sensitivity to being cold, even when others around me were warm.
Maybe I just got the flu, and it was nothing at all to do with Niacin. Three weeks later, with the flu gone, on Friday two weeks back, I decided to go back to the once a week Niacin approach. Initially on taking, I felt really the positive impacts, but on the Saturday I felt totally wrecked, with heightened sinus problems and my body experienced the extreme sensitivity to cold.
The Sunday, I felt much better, like something cleared, and the shock reaction from Niacin was gone, but I have now yesterday again come down with another flu. I am self employed, so this is a real pain. In my worst years of my POIS, over a decade back, I did experience a lot of colds with low immune system and sinus problems.
My core question on Niacin.
My question is, has anyone of our Niacin folks had any similar experiences with this shock or reaction to Niacin, 12-18 Hours post flush.
Anyone know if it can it mess around with immune system or something? Did you personally experience any negative side effects?
Only thing I can think of is maybe because I usually take it 6/7 hours after food, and then don't eat for an hour. Maybe that approach is too hard on my system, and I need to take it a bit closer to food and less than 100 MG.
The 100MG dose a week is hardly taking an overdose. I think Niacin flush is used safely in patients for cholesterol stabilisation, so it should be safe in theory, if not taken too often or in excessive doses. I know there is potential liver damage (for example) in high regular doses.
What I am really curious about is why I get this "shock" reaction in my body for about 24 hours, which kicks in about 12 hours after the flush. It could be a positive thing, clearing something or resetting something. That is my positive thought and I am continue using Niacin weekly on that basis, because it has been something that has provided one of the best clearing experiences for me, even if that was mainly in my first weeks of using it a few months back.
I am also thinking this could be some overall reaction to the shock of the Flush. The first time I got the flush a few months back after taking 200MG (too much), I got the shakes for 30 minutes, as well as a flush.
Any other similar experiences or thoughts out there? I am so disillusioned with P O I S !!!
-
FROM NORD
On Feb 6, 2014, at 12:11 PM, Jason Barron at NORD wrote:
Dear Demo and Daveman,
The announcements for 2013 NORD research grant award recipients have been posted on NORD’s website. For easier navigation and retrieval, I’m including a link to the updated content, here: https://www.rarediseases.org/medical-professionals/research-grants/recipients. Please note that the announcement for the POIS category indicates the sponsorship of the POIS Forum. If you have any other questions or concerns about the grant award and its associated research project, please feel free to contact me at your convenience.
Kind regards,
Jason
---
Jason Barron
Research Administrator
Associate Director, Medical and Scientific Affairs
National Organization for Rare Disorders (NORD)
1779 Massachusetts Avenue NW, Suite 500
Washington, DC 20036
Email: jbarron@rarediseases.org
T (202) 588-5700 x109
F (202) 588-5701
M (203) 482-3398
This e-mail and any attachments may contain confidential and privileged material for the sole use of the intended recipient. Any review, use, distribution or disclosure by others is strictly prohibited. If you are not the intended recipient (or authorized to receive for the recipient), please delete the e-mail, along with any attachments, without copying or disclosing it and notify the sender by reply e-mail immediately. Thank you.
-
I will add [cost-effective patient travel to Newark]
1. MEGABUS
and
2. SPIRIT AIRLINES
has sweet deals especially when planning ahead.
After looking at spirit airlines, they don't have an option for newwark but they have an option for newyork city which is only 21 min from newwark. There are cheap ways to go from new york to newwark.
A quote on spirit airline has a round trip for los angeles to new york for about 350 dollars. It did list some days where the price was comparable to other airlines, the key is just planning ahead and around the flight.
Megabus does not go to newwark either but it does go to new york city it has many routes coming from east cost states to new york city and a couple in other states.
A round-trip from Knoxville Tennessee to newyork city will go around 150 dollars in February.
-
Hey I can possibly come to Newark, when is this thing happening?
-
I will add [cost-effective patient travel to Newark]
1. MEGABUS
and
2. SPIRIT AIRLINES
has sweet deals especially when planning ahead.
After looking at Spirit Airlines, they don't have an option for Newark but they have an option for New York City which is only 21 mins. from Newark. There are cheap ways to go from New York to Newark.
A quote on Spirit Airlines has a round trip for Los Angeles to New York for about 350 dollars. It did list some days where the price was comparable to other airlines, the key is just planning ahead and around the flight.
Megabus does not go to Newark either but it does go to New York City it has many routes coming from East Coast states to New York City and a couple in other states.
A round-trip from Knoxville,Tennessee to New York City will go around 150 dollars in February.
Thank you for all your research, CertainlyPOIS !! :)
-
Hey I can possibly come to Newark, when is this thing happening?
Soon :)
-
FROM DR. KOMISARUK YESTERDAY (SATURDAY)
Dear Demo,
Thank you for all your comments.
First, while the fMRI does not measure dopamine directly, at orgasm, we do
see activation of the nucleus accumbens of the brain, which is a dopamine
target area. We also see activation of this brain region in response to
vagus nerve stimulation. We may be able to see a variation in the typical
pattern of activation of the nucleus accumbens in the men with POIS, which
could indicate altered dopamine function, but this is just a possibility.
Regarding autoimmune function, we are not taking such measurements in this
project.
Regarding travel, we do have a limited travel budget requested. We have
not yet received our official notice of grant award, nor the budget. I
expect we will be able to defray travel costs, but probably not
completely.
Thank you kindly.
Sincerely,
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102
phone (office): 973 353 3941
phone (mobile): 973 462 0178
-
Glad I'm not a honey bee, I woulda died thousands of times by now! ;)
-
LOL, Prancer! BRK says it is false data, so I deleted it. :)
-
Is this how Rutgers will see us as we fMRI???? ;D
;D ;D ;D
(http://i858.photobucket.com/albums/ab143/demografx/A4A11CF7-B85B-4986-B283-2D69596ED272_1.gif)
-
I guess, with the limited budget we have it would be smart to select people who are closed to the research lab or willing to come at their own cost. It's probably better to perform more test with the money that pay plane tickets.
-
I guess, with the limited budget we have it would be smart to select people who are closed to the research lab or willing to come at their own cost. It's probably better to perform more test with the money that pay plane tickets.
Exactly, it would be too easy spend all the money travelling. And since there are organizations that provide low cost or even free travel for these kinds of things, it's better to use them.
Anyways, I don't think the actual budget allows very much for travel. They too want to optimize the research.
-
Support or advice - Niacin Flush.
I'm one of the community here continuing a trial of Niacin. This is having had some initial very positive impacts.
I am still hoping that it may continue to help me and others, and for the research to clearly identify how it's action is related to POIS. The theories around vasoconstriction people speak about here and at NSF is interesting.
I don't want to abandon Niacin, but want to be sure there isn't any harm to Immune system or other organs, using it for POIS in limited dosage.
I had been taking the 100 MG of Flush Niacin just once a week, whether with or without an Orgasm.
Up toward the year end, I felt comfortable using it. However, I am wondering if there are some side effects (I have been getting), that others may have advice on. I'd like to continue safe treatments only and use Niacin safely to limit POIS impacts. Am sure others think the same with what they also experiment with.
Here's what happened.
I was off for 2 weeks over the holiday period in December, so I decided to take Niacin more often, I took the Flush 100 MG every two to three days for a week.
Usually, about an hour after taking Niacin, (even without O) experiencing the flush, I feel quite well and some symptoms recede, and in particular I usually feel more open and energised. The next day, I usually feel really wrecked, run down, tired, my body runs cold, and then these symptoms kind of clear away on the following day, which leaves me a bit better (than pre-Niacin dose) and fairly stable for a few days.
A month back however, after a week of taking the 3 doses of Niacin in succession, I got a very bad flu for three weeks (worst in years) with a really heightened over-sensitivity to being cold, even when others around me were warm.
Maybe I just got the flu, and it was nothing at all to do with Niacin. Three weeks later, with the flu gone, on Friday two weeks back, I decided to go back to the once a week Niacin approach. Initially on taking, I felt really the positive impacts, but on the Saturday I felt totally wrecked, with heightened sinus problems and my body experienced the extreme sensitivity to cold.
The Sunday, I felt much better, like something cleared, and the shock reaction from Niacin was gone, but I have now yesterday again come down with another flu. I am self employed, so this is a real pain. In my worst years of my POIS, over a decade back, I did experience a lot of colds with low immune system and sinus problems.
My core question on Niacin.
My question is, has anyone of our Niacin folks had any similar experiences with this shock or reaction to Niacin, 12-18 Hours post flush.
Anyone know if it can it mess around with immune system or something? Did you personally experience any negative side effects?
Only thing I can think of is maybe because I usually take it 6/7 hours after food, and then don't eat for an hour. Maybe that approach is too hard on my system, and I need to take it a bit closer to food and less than 100 MG.
The 100MG dose a week is hardly taking an overdose. I think Niacin flush is used safely in patients for cholesterol stabilisation, so it should be safe in theory, if not taken too often or in excessive doses. I know there is potential liver damage (for example) in high regular doses.
What I am really curious about is why I get this "shock" reaction in my body for about 24 hours, which kicks in about 12 hours after the flush. It could be a positive thing, clearing something or resetting something. That is my positive thought and I am continue using Niacin weekly on that basis, because it has been something that has provided one of the best clearing experiences for me, even if that was mainly in my first weeks of using it a few months back.
I am also thinking this could be some overall reaction to the shock of the Flush. The first time I got the flush a few months back after taking 200MG (too much), I got the shakes for 30 minutes, as well as a flush.
Any other similar experiences or thoughts out there? I am so disillusioned with P O I S !!!
Hi Colm,
I've just read your post and am hoping that one or more of the men here who use niacin can add some insight, based on their experience.
Your description of the "shock" reaction that occurs ~ 12 hours after taking niacin made me think of some type of temporary re-bound effect. Since niacin causes vasodilation (the niacin "flush" ) -- perhaps your system compensates by temporary vasoconstriction. That could also possibly explain the sudden sensitivity to cold.
I did scan the literature to see if niacin decreases immunity, because of your coming down with some flu-like condition (twice!) after taking it. I couldn't find anything about niacin leading to altered immunity.
This interpretation of mine might not be even marginally correct!! But the rebound effect did occur to me right away, so I wanted to let you know.
Perhaps others here with niacin experience can chime in? A reply from me on this is nothing compared to hearing from others who are affected by POIS and who might have similar experiences with niacin.
Best wishes to you!
Stef
-
Sorry Colm,
I hadn't even seen the post. The RSS doesn't show all posts, so it got by me.
First I would suggest, that it only be taken before the orgasm. We've known that continual consumption raises the thresholds, and therefore lowers the effectivity.
Also if there ARE any negative effects in some, that these would be amplified by taking the niacin more regularly.
Also when taken before the orgasm, it seems as though a metabolism change consumes the niacin, and therefore doesn't leave "excess niacin" floating around in the system. They say that niacin has a half-life of somewhere around 6 hrs. So I suppose once a day, there won't be much "excess" from day to the next. But, we have a particular condition, and when taken before orgasm, the niacin is "used" for something beneficial. If it is not consumed for that "beneficial thing", then it must be metabolized by some other process.
I have noticed that if I take niacin and don't have an orgasm (if I take 3 or 400 mg and don't get a flush for instance) I feel a lot more sluggish for a day or two. On the other hand, even though at times it might require those 3 or 400 mg to get a flush, as long as I orgasm, there doesn't seem to be any problem.
So although I haven't take very much outside of orgasm, yes, when I do, I usually feel negative effects for a good day.
I ONLY take it before orgasm, unless for some extenuating circumstance.
I think it important to follow these guidlines. Also have your liver checked, at least once, better twice a year. Just in case. Normally this is recommended with high doses (1000mg daily for instance), and shouldn't be a problem at our levels, but each person is different, and it's always better to be safe.
-
I guess, with the limited budget we have it would be smart to select people who are closed to the research lab or willing to come at their own cost. It's probably better to perform more test with the money that pay plane tickets.
Excellent point, LAPOISSE.
-
FROM STEF RE TRAVEL TO NEWARK!
Hi All,
The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult.
It takes ~ three weeks for them to make arrangements, FYI.
They've been around for years and are a reliable, trustworthy non-profit organization --
National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767
I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.
Stef
-
THANK YOU, STEF!!!!!
:) :) :) :)
-
The way I follow posts here @ poiscenter is using this link: http://poiscenter.com/forums/index.php?action=recent
It consolidates everything on one page and makes it easier for me to follow. I actually got the idea from Stef a while back and have been using it ever since. Just wanted to remind people in case they were having trouble following everything.
-
The way I follow posts here @ poiscenter is using this link: http://poiscenter.com/forums/index.php?action=recent
It consolidates everything on one page and makes it easier for me to follow. I actually got the idea from Stef a while back and have been using it ever since. Just wanted to remind people in case they were having trouble following everything.
I have found that this doesn't always get everything though either. Perhaps the RSS function gets it's information from there too.
But it's way better than looking through the posts one by one.
-
RSS for your iPhone:
http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom
OR
http://tinyurl.com/kxtbx6a
-
I believe because of the medications that I take, I need a far higher dosage of Niacin than everyone else here I bet. I cannot get a flush unless I take 1.5 grams. 1500mg. It's a lot, but I have still taken it out of desperation. It's been a long time since I've done it, as now it doesn't even seem to work well anymore and Im not willing to go higher because I feel crappy after the niacin. I have less cognitive symptoms, but a lot more strange feelings, and yes definitely shivering and shakes. It feels really uncomfortable.
I now use NSAIDs before ejaculation to moderate success. This is not a good long term solution, but neither is constant POIS with a history of depression and suicidality =(
-
Support or advice - Niacin Flush.
I'm one of the community here continuing a trial of Niacin. This is having had some initial very positive impacts.
I am still hoping that it may continue to help me and others, and for the research to clearly identify how it's action is related to POIS. The theories around vasoconstriction people speak about here and at NSF is interesting.
I don't want to abandon Niacin, but want to be sure there isn't any harm to Immune system or other organs, using it for POIS in limited dosage.
I had been taking the 100 MG of Flush Niacin just once a week, whether with or without an Orgasm.
Up toward the year end, I felt comfortable using it. However, I am wondering if there are some side effects (I have been getting), that others may have advice on. I'd like to continue safe treatments only and use Niacin safely to limit POIS impacts. Am sure others think the same with what they also experiment with.
Here's what happened.
I was off for 2 weeks over the holiday period in December, so I decided to take Niacin more often, I took the Flush 100 MG every two to three days for a week.
Usually, about an hour after taking Niacin, (even without O) experiencing the flush, I feel quite well and some symptoms recede, and in particular I usually feel more open and energised. The next day, I usually feel really wrecked, run down, tired, my body runs cold, and then these symptoms kind of clear away on the following day, which leaves me a bit better (than pre-Niacin dose) and fairly stable for a few days.
A month back however, after a week of taking the 3 doses of Niacin in succession, I got a very bad flu for three weeks (worst in years) with a really heightened over-sensitivity to being cold, even when others around me were warm.
Maybe I just got the flu, and it was nothing at all to do with Niacin. Three weeks later, with the flu gone, on Friday two weeks back, I decided to go back to the once a week Niacin approach. Initially on taking, I felt really the positive impacts, but on the Saturday I felt totally wrecked, with heightened sinus problems and my body experienced the extreme sensitivity to cold.
The Sunday, I felt much better, like something cleared, and the shock reaction from Niacin was gone, but I have now yesterday again come down with another flu. I am self employed, so this is a real pain. In my worst years of my POIS, over a decade back, I did experience a lot of colds with low immune system and sinus problems.
My core question on Niacin.
My question is, has anyone of our Niacin folks had any similar experiences with this shock or reaction to Niacin, 12-18 Hours post flush.
Anyone know if it can it mess around with immune system or something? Did you personally experience any negative side effects?
Only thing I can think of is maybe because I usually take it 6/7 hours after food, and then don't eat for an hour. Maybe that approach is too hard on my system, and I need to take it a bit closer to food and less than 100 MG.
The 100MG dose a week is hardly taking an overdose. I think Niacin flush is used safely in patients for cholesterol stabilisation, so it should be safe in theory, if not taken too often or in excessive doses. I know there is potential liver damage (for example) in high regular doses.
What I am really curious about is why I get this "shock" reaction in my body for about 24 hours, which kicks in about 12 hours after the flush. It could be a positive thing, clearing something or resetting something. That is my positive thought and I am continue using Niacin weekly on that basis, because it has been something that has provided one of the best clearing experiences for me, even if that was mainly in my first weeks of using it a few months back.
I am also thinking this could be some overall reaction to the shock of the Flush. The first time I got the flush a few months back after taking 200MG (too much), I got the shakes for 30 minutes, as well as a flush.
Any other similar experiences or thoughts out there? I am so disillusioned with P O I S !!!
Hi Colm,
I've just read your post and am hoping that one or more of the men here who use niacin can add some insight, based on their experience.
Your description of the "shock" reaction that occurs ~ 12 hours after taking niacin made me think of some type of temporary re-bound effect. Since niacin causes vasodilation (the niacin "flush" ) -- perhaps your system compensates by temporary vasoconstriction. That could also possibly explain the sudden sensitivity to cold.
I did scan the literature to see if niacin decreases immunity, because of your coming down with some flu-like condition (twice!) after taking it. I couldn't find anything about niacin leading to altered immunity.
This interpretation of mine might not be even marginally correct!! But the rebound effect did occur to me right away, so I wanted to let you know.
Perhaps others here with niacin experience can chime in? A reply from me on this is nothing compared to hearing from others who are affected by POIS and who might have similar experiences with niacin.
Best wishes to you!
Stef
Stef,
Thanks very much for the reply to my post - it is helpful. My Mum in law passed away last w/e, so only getting back to the site now. Appreciate your post.
-
Sorry Colm,
I hadn't even seen the post. The RSS doesn't show all posts, so it got by me.
First I would suggest, that it only be taken before the orgasm. We've known that continual consumption raises the thresholds, and therefore lowers the effectivity.
Also if there ARE any negative effects in some, that these would be amplified by taking the niacin more regularly.
Also when taken before the orgasm, it seems as though a metabolism change consumes the niacin, and therefore doesn't leave "excess niacin" floating around in the system. They say that niacin has a half-life of somewhere around 6 hrs. So I suppose once a day, there won't be much "excess" from day to the next. But, we have a particular condition, and when taken before orgasm, the niacin is "used" for something beneficial. If it is not consumed for that "beneficial thing", then it must be metabolized by some other process.
I have noticed that if I take niacin and don't have an orgasm (if I take 3 or 400 mg and don't get a flush for instance) I feel a lot more sluggish for a day or two. On the other hand, even though at times it might require those 3 or 400 mg to get a flush, as long as I orgasm, there doesn't seem to be any problem.
So although I haven't take very much outside of orgasm, yes, when I do, I usually feel negative effects for a good day.
I ONLY take it before orgasm, unless for some extenuating circumstance.
I think it important to follow these guidlines. Also have your liver checked, at least once, better twice a year. Just in case. Normally this is recommended with high doses (1000mg daily for instance), and shouldn't be a problem at our levels, but each person is different, and it's always better to be safe.
Daveman, Thanks for the reply to my post - it is a good steer that I best take Niacin with orgasm and maybe not without. Sorry for only getting back to the site now to say thanks for support and additional info.
-
Colm, my belated condolences.
Demo
-
Thanks Demo
-
Hey guys I need your advice for something, I have a really important interview exactly a week from today; my question is this: what do you guys think is better in terms of anxiety and mental ability, keep abstaining and have my interview on Day 12, or have an O today and have the interview on Day 6? Need your advice please help thank you!
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Hey guys I need your advice for something, I have a really important interview exactly a week from today; my question is this: what do you guys think is better in terms of anxiety and mental ability, keep abstaining and have my interview on Day 12, or have an O today and have the interview on Day 6? Need your advice please help thank you!
Lycopoulos,
A difficult one. If you have a reasonably clear next 6 days and aren't under pressure with other things too much, might be worth condiring an 'O' soon, if you believe you would be well for day 6 interview.
It depends on how your own cycle tends to work and whether there is a danger of a Nocturnal Emission also, if you didn't 'O' now.
I recently had a crucial days work, and unusually had an NE two days before. It really affected what I did that day, and I had to resort to all sorts, just to get through it.
If you do go for it now, just be sure that you are normally (in your world) starting to feel better by two days or so before interview, so you have a positive mindset, and have clear head space to prep and perform as well as you can.
Good luck in the interview and with your decision.
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Good luck and best wishes, Lycopoulos!
Demo
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For those of you interested in my TRT (testosterone replacement therapy) for POIS:
My recent (Feb 7) testosterone readings...with a remark of "good!" by my doctor --
Range
Testosterone, Total 436 250 - 1100 ng/dL
Testosterone, Free 75.5 35.0 - 155.0 pg/mL
I take Androderm 8mg/day (2 T-patches), 365 days/year...for several years now.
If you're interested, check infertility risks with your doctor. My sperm count went to zero, possibly due to this treatment. But I have children already, so it's ok (for me).
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Hello everyone.
Firstly, let me say that I feel sorry for your loss, Colm.
I would like to add something about Colm´s experiences with niacin. This is my own experience.
If I take niacin(whether experiencing the flush or not), but I do not have an orgasm; then I will suffer a mild-Pois version(symptoms which resemble POIS, very cold hands. lower physical and mental energy, It´s like a 20% POIS) that lasts for some days. In that case, I´ll always feel the effects 3 hours, 3 1/2 hours after taking niacin.
If I take my usual amount of niacin(200-250mg), but I don´t experience the flush; then I will suffer again a mild-POIS after orgasm.
And this is something that I realized some time ago: Sometimes if I take niacin and get the flush; I can experience a mild POIS - ONLY IF i had sexual intercourse. This doesn´t happen always, but right now what I am doing is to have a second "self-inflicted"(masturbation) orgasm after intercourse just to eliminate the possibility . This will clear my symptoms away.
And if I masturbate after taking niacin(and having the flush), I´ll be ok.
So I reached the conclusion that niacin is some kind of double edge sword. My advice is to use it ONLY IF you are 100% sure that you are going to orgasm after having a flush.
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Hey, just wanted to say a big thanks to Colm and Demo for you help! I ended up abstaining for the entire time, so I will do my interview on Day 12. Weird thing happened to me yesterday and I?m curious if this is POIS related and if you guys have experienced this before. Yesterday I was on Day 8, everything was great, clear-minded, no anxiety etc. and all the sudden in the middle of the day something changed in me and POIS reappeared out of nowhere. I was brain fogged and socially awkward; let me be clear on this, yesterday was Day 8 since O, I get symptoms but did not have an O yesterday. Please share your experiences if you have any with this.
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Hello everyone.
I would like to add something about Colm?s experiences with niacin. This is my own experience.
If I take niacin(whether experiencing the flush or not), but I do not have an orgasm; then I will suffer a mild-Pois version(symptoms which resemble POIS, very cold hands. lower physical and mental energy, It?s like a 20% POIS) that lasts for some days. In that case, I?ll always feel the effects 3 hours, 3 1/2 hours after taking niacin.
If I take my usual amount of niacin(200-250mg), but I don?t experience the flush; then I will suffer again a mild-POIS after orgasm.
And this is something that I realized some time ago: Sometimes if I take niacin and get the flush; I can experience a mild POIS - ONLY IF i had sexual intercourse. This doesn?t happen always, but right now what I am doing is to have a second "self-inflicted"(masturbation) orgasm after intercourse just to eliminate the possibility . This will clear my symptoms away.
And if I masturbate after taking niacin(and having the flush), I?ll be ok.
So I reached the conclusion that niacin is some kind of double edge sword. My advice is to use it ONLY IF you are 100% sure that you are going to orgasm after having a flush.
Hi Observer,
Thank you very much for this input and sharing your experience here. That is very helpful, and also support's Davemen's previous inputs on the Niacin front.
Your advice to use it ONLY IF 100% sure that one is going to orgasm after having a flush, is something I will now take on board. I will update on the board, if any additional experiences. I am sure someone with a more scientific mind (not ME I'm afraid), can contribute to why this proves to be a tendency for physiological interactions with Niacin B3 Flush.
Worth (potentially) exploring a bit more as part of the 2014 research, I would propose.
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Hey, just wanted to say a big thanks to Colm and Demo for you help! I ended up abstaining for the entire time, so I will do my interview on Day 12. Weird thing happened to me yesterday and I?m curious if this is POIS related and if you guys have experienced this before. Yesterday I was on Day 8, everything was great, clear-minded, no anxiety etc. and all the sudden in the middle of the day something changed in me and POIS reappeared out of nowhere. I was brain fogged and socially awkward; let me be clear on this, yesterday was Day 8 since O, I get symptoms but did not have an O yesterday. Please share your experiences if you have any with this.
Do you know what Lycopoulos,
I think POIS lurks in the background and stress can bring it up. As it is a condition that affects us physioligcally and maybe neurologically (more than many of us thought), stress, like an impending life event - interview etc - might just trigger the lurking beast.
I think with this element of POIS, it might clear though exercise, relaxation or other things that work for individuals in their symptoms management. It may not even be POIS, just stress at work. With the full POIS (post 3-7 days for different guys), the symptom management stuff has a more limited impact. Try focus on the positives for day 12, and believe in yourself (just try and forget POIS for the few hours you need to be focused!)
Very best of luck man.
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I think POIS lurks in the background and stress can bring it up.
Exactly what my endocrinologist said when I was stressed out - yet "cured" - but I still had a smattering of POIS during "stress periods"!!
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this happens to me all the time i.never.figured out why.
i.have.always suspected maybe it is something i eat
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this happens to me all the time i.never.figured out why.
i.have.always suspected maybe it is something i eat
CertainlyPOIS, for me some foods do aggravate my symptoms and POIS state.
Many members have also confirm that for themselves.
Stress and tension too.
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RUTGERS' STATUS
Demo,
It takes about a month to get IRB approval, if all goes well.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102
phone (office): 973 353 3941
phone (mobile): 973 462 0178
On Fri, February 28, 2014 2:49 pm, Demo wrote:
Thanks, Barry,
I thought the delay was caused by getting the official NORD letter which
we pushed for. We thought it was a month from your receipt. Am I just
nitpicking "days"?
Best,
Demo
ps - is everything on hold for Rutgers' formal approval?
Anything we can do to help initiate this long-awaited study would be
appreciated.
On Feb 28, 2014, at 11:06 AM, Barry Komisaruk <brk@psychology.rutgers.edu>
wrote:
Dear Demo,
Hopefully in about a month.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941(work)
fax: 973-353-1171
On 2/27/2014 5:09 PM, Demo wrote:
Hi Barry,
Just curious if there is an ETA for Rutgers' formal approval of fMRI
for POISers?
Best regards,
Demo
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I ended up abstaining for the entire time, so I will do my interview on Day 12.
How was the interview Lycopoulos?
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Hey Colm! Really nice of you for asking, although I was a little anxious and nervous it went pretty well. It was about me going on a student exchange to Spain. They're highly selective in to this program and in dying to go, I'm getting an answer this week, fingers crossed!
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Hey guys, need a piece of advice once again and would love to hear your thoughts on this:
Im 18 days in the cycle, feeling great so far and I?m planning on going on vacation with friends one week from today. I personally don?t want to enter in to another cycle before going on vacation, however at the same time I?m afraid that if I abstain for too long I increase my chance of NE. What are your thought on this? Is it very common to have a NE after 25 days of abstaining?
In other words: Should I start a new cycle this week so I can be ?Fresh? for vacation, or can I keep abstaining until then?
Thank you!
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(http://i858.photobucket.com/albums/ab143/demografx/AA49B57A-315F-4C33-884A-BBF4AA4ADDC0.jpg)
LOL!!!
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Rutgers lab studies female orgasm through brain imaging
http://tinyurl.com/y3286te
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(http://i858.photobucket.com/albums/ab143/demografx/E1571E07-21EB-4C7D-8FF1-883E0BE2769B_1.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/E160A607-7E06-462C-8FFE-8BA39FF23531.jpg)
POISER AT WORK - 9th FLOOR OFFICE!
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(http://i858.photobucket.com/albums/ab143/demografx/7F353CD0-4958-4B77-8BDF-B379EF0A435D.jpg)
Hold it in till u get to Rutgers!!!
;D ;D
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While we're at it... some thoughts on BRAIN FOG --
Yours,
Daveman!
(http://i858.photobucket.com/albums/ab143/demografx/39F36E17-4264-4DB8-981B-6291BB01B18A.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/63E1B7D9-B258-4C8C-8884-6FDBFB60F436.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/8280CFD7-C175-4C4B-AE36-24100B338E55.jpg)
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Hi Guys,
http://poiscenter.com/forums/index.php?topic=1287.0
I would like you to answer to this poll ; it would surely mean something and could be quite quite helpful but we need a significant number of response for that. I strongly believe(as kurtosis, herman, B Daniel, Bjim, etc) that digestion is strongly involved in POIS ; Looking at our weight and validate that we are all skinny(this is my feeling) could be a first important step toward research.
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Do you have UTI?
I just found out that that one of the side effects of Xyzal (levocetirizine) is that it gets harder to urinate. The prostate becomes bigger after taking Xyzal. And in my case also after POIS. I used to use an extra dose of Xyzal when in POIS. I use almost everyday 1 pill. Now I want to stop.
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IRB Committees (Institutional Review Board committees) take their time when reviewing studies.
They should take their time -- there should be no rushing, as lives may be affected by these research studies.
The main job of the IRB committee is to make sure that a study is (1) safe, (2) ethical, and (3) there's a solid medical goal. There are often lots of back-and-forth questions to the PI (Principal Investigator -- Dr. Komisaruk) from the Committee -- the questions are sent and answered via mail. Then everyone has to wait until the Committee meets again (usually once/month) to review and discuss the answers. Sometimes, more questions are generated.
If any of you is interested, here's a link to information about the Rutgers University IRB Committee -- http://orra.rutgers.edu/rutgers-irb.
For unknown reasons, NORD did not send the formal contract with details to Dr. Komisaruk until mid-February (despite knowing he was the MAC's choice for our grant award back in mid-December). So, Dr. Komisaruk and his team probably submitted their IRB paperwork shortly after mid-February. In that sense, not much time has passed in waiting for IRB approval.
I'm sure that this waiting period for the IRB approval is very frustrating -- for both Dr. Komisaruk and for all of us! But a few months of having to wait for IRB approval is absolutely normal. Please know that a few months for the IRB approval to come through is absolutely not a cause for concern -- but it can be vexing!
It will happen -- have NO doubts!
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The most recent reply from Rutgers:
On Apr 25, 2014, at 12:28 PM, Barry Komisaruk <brk@psychology.rutgers.edu> wrote:
Dear Demo and Daveman,
We are obtaining the equipment and getting ready to submit the irb application.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941(work)
fax: 973-353-1171
On 4/25/2014 10:29 AM, Demo wrote:
Hello, Dr. Komisaruk,
We hope all is well with you and your staff.
Please advise:
Has significant progress been made toward commencing the POIS study?
Is there an estimated start date for the study?
We look forward to your response.
Sincerely,
Demo and Daveman
--------------------------------------------------------
Please note:
Dr K said it's ok for individual members to email him, so feel free to do so (his email is at the beginning of this post) -- please share your replies here if it's not too confidential and can help other members!
Although Dr. K. was short in his answer, we got the feeling that the pay off of the whole process is to develop details of the actual program.
We imagine that's the case, otherwise how is he going to get any kind of approval if he can't specify exactly what and how he is going to do it.
We imagine that involves now more than just a "general plan".
How will the test groups be organized? What will their characteristics be? What tests will he do? What results are expected? How will the tests change as results change?
Etc. Etc.
So that is a lot more now than just asking for Rutgers' permission. Then there's interaction. If the board doesn't like something, he must go in and change the plan.
Best wishes to all of us!
Demo and Daveman
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8) niiiice
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Thanks, Prancer!
This isn't easy!! ;D
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Anticipated Start Date
POIS Research at Rutgers
July, 2014
Per Dr Komisaruk email today.
Daveman and Demo
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Anticipated Start Date
POIS Research at Rutgers
July, 2014
Per Dr Komisaruk email today.
Daveman and Demo
Fantastic!! So excited!
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Potentially Ground Breaking News for POIS!
I like the understated announcements there Demo.
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Thanks, Prancer and Colm!
(Your names together sound like a law firm! ;D )
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[mod edit ;D]
Potentially This is Ground Breaking News for POIS!
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I might visit with Dr K this summer.
Mostly to listen.
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POISCenter RSS for your iPhone:
http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom
OR
http://tinyurl.com/kxtbx6a
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How do I sign up for the study I live in NJ?
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For study participation:
Write to Dr. Barry R. Komisaruk
brk@psychology.rutgers.edu
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I've written him before, is it time to write him again an say I'm up for participation?
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Up to you.
Anticipated start date - per Dr K - is July.
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Thanks for participating in our first study, Nightingale! :)
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I got a new full time job so I won't have time to participate in the study unfortunately. It's just manual labor so if I took time off this early they'd just replace me. Then again if somehow I could go there on the weekend I might be able to pull off both.
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You can write to Dr K and ask him about the weekend possibility. (For his address, see 5 posts above, Reply #1148).
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Good luck, Vincent! :)
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Sent Dr. K an email. Thanks Demo.
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Hey guys,
I just sent an email to Barry a few days ago, just generally asking about POIS.
He said "All the data like yours are new... they are all grist for the mill, Barry"
I think he wants us members to provide our experiences to him via email.
Does anyone have any update about his program starting in July?
Will it start in July or be delayed?
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I have a tentative appointment with Dr K at his office in late June.
Daveman & I will keep you apprised.
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I have a tentative appointment with Dr K late June [mod edit], Daveman & I will keep you apprised.
Awesome, thanks! And good luck to Vincent, I'm glad you are okay!
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I have a tentative appointment with Dr K at his office in late June.
Daveman & I will keep you apprised.
Please demografx, lets find a cure for this POIS.
To be honest, since there is only a few people who are affected by this and since barry k is the only scientist working on it, it becomes difficult to find a cure.
but fingers crossed and please lets do sth about this horrible disorder. it affects me greatly :(
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Please demografx, lets find a cure for this POIS.
That's been my (and other longterm forum members') goal since 2007.
Self-funding our way to Science is not an overnight process.
We are fortunate to experience much more and rapid progress than most rare, unexplained disorders.
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It's almost time! I can't hardly wait! Big day for us all, thanks Demo for taking the time to meet with Dr. K :)
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Yes, thank you Demo! Can't wait!!
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Hey Everybody,
Demo just got back from a meeting with Dr. Komisaruk, and he has come back with a briefcase full of information. The trip was very positive, and the prospect of hope has been rekindled.
At this moment, the information is being "organized", but in the next few days, we'll let you all in in what is and has been going on.
For sure it is evident that although there has been quite a bit of silence from their end, this has not meant that nothing was happening. They have had to put a detailed program together and it is obvious that they didn't take that lightly. They have done their homework and one way or another we are going to get to the bottom of POIS.
So hang on a few more days, and we'll start posting some of the findings.
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That's a big hope. I have many questions and doubts about the choice of vagus nerve as center of the study.
But the thing that comforts me is the meeting with somebody under hormones therapy as Demo. If the logical link is made with Testosterone, I have no doubt Pois mysteries will be revealed soon. This is the point where auto-allergy theory failed.
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Me too. I see they don't sell it in the US (yet). It's available in Italy thou. I've just mailed 'em to see how much would that be.
Probably making it is about 10/15 euros and then they just add a 0 at the end... ;D
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Me too. I see they don't sell it in the US (yet). It's available in Italy thou. I've just mailed 'em to see how much would that be.
Probably making it is about 10/15 euros and then they just add a 0 at the end... ;D
Ahah I've been way too optimistic. It's 2500 euros. There are 2 zeros right there.
You can try it for six months and give it back if you're not happy. They would charge you back 90% of it.
Not a try&see thing.
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Well, that´s simply amazing, good job demo and everyone (including Dr. K. of course!). I am sure everyone is excited to hear more about Dr.Komisaruk´s recent research.
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@ Daveman and Demograhx
Guys great work! I am optimistic and certainly hopeful of the research being undertaken by Dr Komisaruk.
Let's please find a cure to this horrible disorder, as I have been severely affected by this disorder. My motivation levels, and general confidence/ability to do normal things in life has been lowered due to this horrible POIS. So many other people like "Disaster" have also experienced extreme losses, such as losing as this girlfriend.
It affects us in so many ways, such as relationships, work, drive to succeed in life and normal things people do.
So I really pray to the heavens above, that this research by Dr. Komisaruk finds a cure.
What do you guys think of Dr. Komisaruk finding a cure for this?
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This is the point where auto-allergy theory failed.
I wouldn't rule that out. For my experience semen plays a huge role. I practice retention (pushing on the perineum wall before ejaculation, therefore preventing the semen find its way out) when I masturbate and leave "regular" ejaculation for sex only (too awkward to explain).
The difference especially in the physical symptoms is HUGE. I believe semen goes to the bladder where is somehow "neutralized". Peeing right after would get me full POIS.
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I wouldn't rule that out. For my experience semen plays a huge role. I practice retention (pushing on the perineum wall before ejaculation, therefore preventing the semen find its way out) when I masturbate and leave "regular" ejaculation for sex only (too awkward to explain).
The difference especially in the physical symptoms is HUGE. I believe semen goes to the bladder where is somehow "neutralized". Peeing right after would get me full POIS.
Do you think the volume/quantity of sperm is reduced when you use this retention ?
I ask this because I wonder if you "save" something with this technique.
There is a element in sperm very interesting : DHA.
DHA is present in fish and fish may reduce my Pois.
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I wouldn't rule that out. For my experience semen plays a huge role. I practice retention (pushing on the perineum wall before ejaculation, therefore preventing the semen find its way out) when I masturbate and leave "regular" ejaculation for sex only (too awkward to explain).
The difference especially in the physical symptoms is HUGE. I believe semen goes to the bladder where is somehow "neutralized". Peeing right after would get me full POIS.
Do you think the volume/quantity of sperm is reduced when you use this retention ?
I ask this because I wonder if you "save" something with this technique.
There is a element in sperm very interesting : DHA.
DHA is present in fish and fish may reduce my Pois.
I don't think is matter of "saving" since semen leaves the prostate anyway. It's just deviated to the bladder (or somewhere else). Maybe whatever reaction my body has to semen, most of it happens in the urinary tract further on. Who knows. That's why this technique might not work for someone else. I tend to limit it anyway because I am fully aware it is not exactly a natural thing to do.
But this just to say that semen and POIS in my case are related. In facts POIS for me started with ejaculation. Before my body started producing semen (12/13 yo) I remember to be happily masturbating with no POIS.
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Thanks, Prancer and Colm!
(Your names together sound like a law firm! ;D )
Or an advertising agency!
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Hey Everybody,
Demo just got back from a meeting with Dr. Komisaruk, and he has come back with a briefcase full of information. The trip was very positive, and the prospect of hope has been rekindled.
At this moment, the information is being "organized", but in the next few days, we'll let you all in in what is and has been going on.
For sure it is evident that although there has been quite a bit of silence from their end, this has not meant that nothing was happening. They have had to put a detailed program together and it is obvious that they didn't take that lightly. They have done their homework and one way or another we are going to get to the bottom of POIS.
So hang on a few more days, and we'll start posting some of the findings.
Daveman, many thank you's for all your incredible support and interpretation of this Great New Adventure at Rutgers.
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In case you missed the Dr. Komisaruk-Rutgers POIS Study Progress thread:
http://poiscenter.com/forums/index.php?topic=1367.0
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This is the point where auto-allergy theory failed.
I wouldn't rule that out. For my experience semen plays a huge role. I practice retention (pushing on the perineum wall before ejaculation, therefore preventing the semen find its way out) when I masturbate and leave "regular" ejaculation for sex only (too awkward to explain).
The difference especially in the physical symptoms is HUGE. I believe semen goes to the bladder where is somehow "neutralized". Peeing right after would get me full POIS.
For me it's the reverse. I keep it in (sending it to the bladder) and I'm much worse after. My best ones are when I expell it out as cleanly and completely as possible.
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Haven't seen anything from goinglesscrazy in a long time. I hope he's still okay.
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Tech difficulties here!
Please check:
https://groups.google.com/forum/#!forum/poiscenter
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Link not working pls bro
-
https://groups.google.com/forum/m/#!forum/poiscenter
-
http://tinyurl.com/obmgpqm
-
Or try this:
http://tinyurl.com/llfyrxt
-
Please post a " ! " if you can see this post.
Thank you and sorry for these tech nuisances -- life in the fast lane !
Best,
Demo,
:)
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We are beginning to have problems with this form. The hosting service was bought about 8 months ago, sold to one of those mass service companies, and changes in server version numbers and operating software is affecting the funcionality of our forum. Many are having trouble posting and certain other functions are also failing sporadically.
It is not a small thing to fix, and requires time and or money to do, which at this point I do not have.
I have created a forum over at google groups, which is very flexible (maybe not as pretty) and allows pretty much all the same features as we have here.
The link is:
https://groups.google.com/forum/#!forum/poiscenter
Please all go over there, so that we don't risk problems here. It's an important time right now, and this other forum will allow us to continue securely.
Sorry for this big inconvenience.
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I don't think we should completely abandon this one for those who aren't having any problems. (I haven't experienced any technical problems except when I first signed up back in 2012). Plus this one is really, really easy to find via search for any new POISers, and it has loads of good information still in it. So maybe we can use both, one as a backup? ???
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I don't think we should completely abandon this one for those who aren't having any problems. (I haven't experienced any technical problems except when I first signed up back in 2012). Plus this one is really, really easy to find via search for any new POISers, and it has loads of good information still in it. So maybe we can use both, one as a backup? ???
This one won't close. At the very worst, It could eventually get locked so that there'd be no posting, but it would always stay for the information and post it contains.
One problem is that I can't back up the database. So there would be no recovery if something failed. I have asked the hosting service for some sort of solution. Still have to see what they say.
So it just makes me nervous. If there's a risk that something will get lost, it's better to be safe and use google groups until we sort this out.
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I don't think we should completely abandon this one for those who aren't having any problems. (I haven't experienced any technical problems except when I first signed up back in 2012). Plus this one is really, really easy to find via search for any new POISers, and it has loads of good information still in it. So maybe we can use both, one as a backup? ???
Thanks , Prancer!
You're a solid citizen here!! :)
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(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/899DA16D-5365-4E91-981E-102E1A2A8237.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/642D6C8A-7CE5-4257-B606-81AA6976AB26_1.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/D5D4BBE8-FEFA-4E3D-8FC7-E9830017E39D.jpg)
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!
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Thanks, Nightingale!
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Dr. Eleni Frangos, PhD., one of our Rutgers-POIS Study Members. Her dissertation was successfully defended. Much of what she writes is related to the Study we're now undertaking of POIS.
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/A914AD79-3091-4B7E-9F88-DB7C06375313.jpg)
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Hey guys,
I'm working with our hosting service to see if they can install the latest version of SMF forum.
The forum hasn't been customized much, so that makes upgrading easier. An upgrade comes without any cusomizations.
The only customizations I think are the icons for the categories, which are easy to redo, and the chat, which is not used very much. So we will probably not install the chat with the upgrade. not at first anyways. If there's a demand, we could install it.
All this has a cost though. I just paid for hosting renewal for 2 yrs, which cost me over $200. So I'd like to ask that we have volunteers to upgrade our forum. They told me it would be probably 1 or 2 hrs of work, @ $60 per hour. I suspect that it could take twice that.
So we need committments for somewhere around $250. What we could do is get the committments, and then have the work done. Once the bill comes we can divide the actual cost among those who commit, so that nobody is paying money that won't actually be used.
So let me know. If we don't do the upgrade, then we should move to google groups.
Thanks
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Hey guys,
I'm working with our hosting service to see if they can install the latest version of SMF forum.
The forum hasn't been customized much, so that makes upgrading easier. An upgrade comes without any cusomizations.
The only customizations I think are the icons for the categories, which are easy to redo, and the chat, which is not used very much. So we will probably not install the chat with the upgrade. not at first anyways. If there's a demand, we could install it.
All this has a cost though. I just paid for hosting renewal for 2 yrs, which cost me over $200. So I'd like to ask that we have volunteers to upgrade our forum. They told me it would be probably 1 or 2 hrs of work, @ $60 per hour. I suspect that it could take twice that.
So we need committments for somewhere around $250. What we could do is get the committments, and then have the work done. Once the bill comes we can divide the actual cost among those who commit, so that nobody is paying money that won't actually be used.
So let me know. If we don't do the upgrade, then we should move to google groups.
Thanks
Teriffic, Daveman .
Count me in for $100!
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!
! <--- ;)
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Thanks, Prancer!
And Nightingale!
You're welcome! And thank you, Daveman and everyone for helping to get this far with the research! So awesome!!
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(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/41E4AC5C-5EB2-43C6-B095-83BBA2A35E0E.jpg)
One of the Rutgers-POIS questionnaire forms. Please see...
www.tinyurl.com/muxuurv
...for the other forms and request for feedback.
Best,
Demo
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Thanks, Prancer!
And Nightingale!
You're welcome! And thank you, Daveman and everyone for helping to get this far with the research! So awesome!!
Thank you, Prancer! :)
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Reprinted: Jul 14 Maniac Komplex (@Google Groups)
"...any thought to getting like 5 people for a single Hilton $100 room? would be 20$ a night and 4 or 3 of us could just rack out on the floor with a sleeping bag n pillow."
4:16 PM
Great idea, MK!!
Best,
demografx
(Demo)
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You know, I just remembered that a new POISer from Spain found us from reading the El Mundo article, and I think his post was deleted by accident during the poiscenter upgrade. So even though I forgot his name I wanna say hi to him (in spanish) if he is still reading. The only things I remember was that his post was in Spanish and he is 29 and suffering a lot.
Hola y bienvenido! He todo que nos haya encontrado al leer el articulo de El Mundo. Por favor, publique de nuevo. Lo siento mucho lo de tu mala experiencia. :]
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Hey guys,
I'm working with our hosting service to see if they can install the latest version of SMF forum.
The forum hasn't been customized much, so that makes upgrading easier. An upgrade comes without any cusomizations.
The only customizations I think are the icons for the categories, which are easy to redo, and the chat, which is not used very much. So we will probably not install the chat with the upgrade. not at first anyways. If there's a demand, we could install it.
All this has a cost though. I just paid for hosting renewal for 2 yrs, which cost me over $200. So I'd like to ask that we have volunteers to upgrade our forum. They told me it would be probably 1 or 2 hrs of work, @ $60 per hour. I suspect that it could take twice that.
So we need committments for somewhere around $250. What we could do is get the committments, and then have the work done. Once the bill comes we can divide the actual cost among those who commit, so that nobody is paying money that won't actually be used.
So let me know. If we don't do the upgrade, then we should move to google groups.
Thanks
Teriffic, Daveman .
Count me in for $100!
I offered a donation here also a few days back, but it seems to have got deleted. Hopefully we can get a few more $'s into the offer, so Daveman can upgrade here, rather than us all heading off to Google Groups. Seems like a no brainer, what do you think guys? What about some of us, who weren't here to contribute to the research, but might benefit from it?
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Dear friends! I am new to this forum. I am from Kazakhstan. Very little English. Write an interpreter, so sorry). I want to thank you for what he has done such a great job))) I have a question: Tell me, Dr. komisaruk will do a full examination or to prove the theory of the vagus nerve? If you answer I would be very grateful). P.S by the way do you happen after orgasm acne?
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Dear friends! I am new to this forum. I am from Kazakhstan. Very little English. Write an interpreter, so sorry). I want to thank you for what he has done such a great job))) I have a question: Tell me, Dr. komisaruk will do a full examination or to prove the theory of the vagus nerve? If you answer I would be very grateful). P.S by the way do you happen after orgasm acne?
I have heard of several that have acne problems. Perhaps if they are around, they can answer.
Welcome and thanks.
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Good news everybody! We have updated the forum to the latest version, and it seems that they have done apretty good job.
It is difficult with updates, especially going from 1.13 to 2.02, that the look is close. But they have done it.
You will notice a few differences, but for the most part there are more better features than less good feature.
The adjustment should be minimal, but the best part is that we don't have to go to Google Groups!
One problem is that I had a SPAM filter before, which I haven't installed yet. However the new version has better security in itself.
So please be on the look-out for SPAM. If you see any, press the "Notify Moderator" button below any malicious post, and I will be notified and can anhiolate the the #$@!!% idiot.
If we have too much spam, I will reinstall the filter.
Thanks for your patience.
Let's get back to work!! :)
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Many thanks, Daveman!! :)
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Thanks to you guys who do all the this work behind the scenes.
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Thanks to you guys who do all the this work behind the scenes.
Beautiful, thanks guys for all your hard work!
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Friends, please, answer the question: Barry will look for the treatment of research, or to prove the theory of the vagus nerve?
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(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/41E4AC5C-5EB2-43C6-B095-83BBA2A35E0E.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/5E2F7988-7514-45E9-BAB6-DD2709672EBF.jpg)
Two of the Rutgers-POIS questionnaire forms.
Comments? Thoughts? Questions ?
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(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/2014-01/D173F39D-20C2-413B-9547-4E6094434F9C.jpg)
Per Dr. Komisaruk: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."
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I snapped our fMRI machine thru the window (I was not permitted to photograph inside the room) -- while Dr Komisaruk was introducing me to Gregg Ferencz, the fMRI technician on our POIS Studies.
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/01A37574-99DF-4100-8B7D-5417845DAA32.jpg)
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As many of you know, Dr. Pooja Lakshmin, M.D., is also on our Rutgers-POIS Study Team.
Dr. Lakshmin will be pursuing her Psychiatry Residency while studying POIS.
(http://cabecahealth.com/wp-content/uploads/2013/04/drpooja-300x225.jpg)
Another photo of Dr. Lakshmin, M.D.
Rutgers-POIS Study Associate
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/FC6DBA57-3E19-4CA5-A5C9-36923AB414AE.jpg)
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When I very recently visited Dr Komisaruk, he recommended this book (he's written several, including "The Science Of Orgasm ") to our forum:
(http://i858.photobucket.com/albums/ab143/demografx/5E148451-F22A-40A0-9B66-7EAD0FA6372B.jpg)
Available at Amazon. 75 cents used...& up
http://www.amazon.com/gp/aw/d/0801893968?pc_redir=1405282782&robot_redir=1
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TELL, BARRY WILL LOOK FOR TREATMENT OR TO CHECK THE THEORY OF THE WANDERING NERVE?
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DEMO, PLEASE ANSWER
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Friends, please, answer the question: Barry will look for the treatment of research, or to prove the theory of the vagus nerve?
Not sure I entirely understand your question.
His principal objective is to see how the Vagus nerve is invoved. The results of such an investigation could vary significantly.
It is not normal, in research of a seed grant, to actually produce a cure. The objective, generally speaking is to investigate and provide enough further, solid evidence that there is something there (POIS is real), and that a more clear direction can be established to it's further investigation.
This does not mean that a treatment or even a cure potentially can't be found. In fact, I think there is hope for some grade of success within the bounds between treatment and cure. But nothing can be promised.
It is really a big step forward, to be able to provide real, credible medical evidence which opens the door for POIS to the medical profession. We are tired of doctors not believing us.
To be able to go into a doctor's office and say I have POIS, without them saying "Nonsense, you need anti-depressants and a psychiatrist"!
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Daveman, many thanks for the answer))))). Mine to the simptomy:acne, fatigue, apathy, cognitive violations, a social phobia, weakness in feet. somewhere in 10 years there was temperature 37.0 which was week doctors of nothing could tell.
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Anyone else have ear tubes as a kid? I wonder now about damage to the vagus nerve from surgery...
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2 more snapshots:
Entrance to Dr Komisaruk's office building:
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/F8F0FCFE-656C-4785-A973-004EE44934FC.jpg)
Outside Dr. Komisaruk's office is a first-of-it's-kind chart!
"Men's Genital Structures Mapped On The Sensory Cortex: fMRI Evidence"
(Rutgers-POIS Team Members)
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/1EC47FCD-5E55-44EC-8599-023882507D88.jpg)
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Friends, please, answer the question: Barry will look for the treatment of research, or to prove the theory of the vagus nerve?
Not sure I entirely understand your question.
His principal objective is to see how the Vagus nerve is invoved. The results of such an investigation could vary significantly.
It is not normal, in research of a seed grant, to actually produce a cure. The objective, generally speaking is to investigate and provide enough further, solid evidence that there is something there (POIS is real), and that a more clear direction can be established to it's further investigation.
This does not mean that a treatment or even a cure potentially can't be found. In fact, I think there is hope for some grade of success within the bounds between treatment and cure. But nothing can be promised.
It is really a big step forward, to be able to provide real, credible medical evidence which opens the door for POIS to the medical profession. We are tired of doctors not believing us.
To be able to go into a doctor's office and say I have POIS, without them saying "Nonsense, you need anti-depressants and a psychiatrist"!
Thanks, Daveman! :)
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(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/384DB4B8-1D33-4823-AC75-011A74AD4F88.jpg)
Dr Komisaruk checking results with Associate.
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(http://www.saudedavida.com.br/wp-content/uploads/2013/10/131020143640_barry_304x304_universidaderutgers.jpg)
Dr Komisaruk with patient at fMRI.
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Inexpensive housing near Dr Komisaruk
& RUBIC:
From lost thread:
https://m.airbnb.com/s/Newark--NJ
The Hilton Hotel is very close to
Dr Komisaruk -- but expensive :(
(http://3.bp.blogspot.com/-X19egjCRxZU/T3a2BbTBnCI/AAAAAAAAAVU/iHwTPDqz_VQ/s1600/Airbnb-Booking-Screen.jpg)
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The adjustment should be minimal, but the best part is that we don't have to go to Google Groups!
Good, thank you.
So please be on the look-out for SPAM. If you see any, press the "Notify Moderator" button below any malicious post, and I will be notified and can anhiolate the the #$@!!% idiot.
There is no "Notify Moderator" button under any post? I think the "Notify" button under every thread is for subscription.
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The adjustment should be minimal, but the best part is that we don't have to go to Google Groups!
Good, thank you.
So please be on the look-out for SPAM. If you see any, press the "Notify Moderator" button below any malicious post, and I will be notified and can anhiolate the the #$@!!% idiot.
There is no "Notify Moderator" button under any post? I think the "Notify" button under every thread is for subscription.
OK, sorry, before the upgrade it was there and could be used to report posts.
Actually I was just checking up on it because someone else said the same thing. I can see the link, but I don't have the same privileges.
I'll go see if I can configure it back in.
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POIS AND BLOOD CIRCULATION
-----------------------------------------------------
Just read about the symptoms of poor blood circulation and feel them in me while in POIS. I hope that fmris can detect blood circulation problems in the brain and gives more idea about what happens inside.
Here are listed the symptoms of poor blood circulation:(http://m.nativeremedies.com/ailment/poor-blood-circulation-symptoms.html)
What are the Symptoms of Poor Circulation?
Symptoms and signs of poor circulation may include:
Numbness or loss of sensation or tingling in the hands, feet, or toes
Changes in skin temperature (cold hands, feet, legs, and ears)
Fatigue (Lack of or Low Energy)
Hair Loss
Vertigo or Dizziness
Dry Skin
Edema or Swelling in the feet, legs and/or fingers
Varicose Veins, Leg Ulcers and Foot Ulcers
Headaches
Muscle Cramps and Pain
Dandruff
Itching, especially Itchy Skin on Hands, Legs, or Feet
Changes in the color of the skin (it becomes more pale, bluish, or reddish- also known as (cyanosis ? an indication of inadequate oxygen delivery)
Cramping in Legs, Buttocks or Feet During Activity
Lower Leg Pain or Claudication
Poor discernment of temperature and pain
Skin breakdowns, Infection and sores do not heal as well as they should
Shortness of Breath
Irregular Heart Beats
Sluggish memory
LackCIRCULATION
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I'll go see if I can configure ["Report to Moderator"] back in.
Thanks, Daveman!! :)
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As many of you know, Dr. Pooja Lakshmin, M.D., is also on our Rutgers-POIS Study Team.
Dr. Lakshmin will be pursuing her Psychiatry Residency while studying POIS.
(http://cabecahealth.com/wp-content/uploads/2013/04/drpooja-300x225.jpg)
Another photo of Dr. Lakshmin, M.D.
Rutgers-POIS Study Associate
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/FC6DBA57-3E19-4CA5-A5C9-36923AB414AE.jpg)
Member b_jim found YouTube videos of Dr. Lakshmin, starting with "Orgasm and Science":
https://m.youtube.com/watch?v=2hx58XnxNxg
More YouTubes by Dr Lakshmin from b_jim's research:
https://www.youtube.com/watch?v=apxsfCr0u_E
https://www.youtube.com/watch?v=RmXAUUaXdLQ
https://www.youtube.com/watch?v=vmVa-35Nvpo
https://www.youtube.com/watch?v=lQc_zhbaXdI
Thank you, b_jim !! :)
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As many of you know, Dr. Pooja Lakshmin, M.D., is also on our Rutgers-POIS Study Team.
Dr. Lakshmin will be pursuing her Psychiatry Residency while studying POIS.
(http://cabecahealth.com/wp-content/uploads/2013/04/drpooja-300x225.jpg)
Another photo of Dr. Lakshmin, M.D.
Rutgers-POIS Study Associate
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/FC6DBA57-3E19-4CA5-A5C9-36923AB414AE.jpg)
Member b_jim found YouTube videos of Dr. Lakshmin, starting with "Orgasm and Science":
https://m.youtube.com/watch?v=2hx58XnxNxg
More YouTubes by Dr Lakshmin from b_jim's research:
https://www.youtube.com/watch?v=apxsfCr0u_E
https://www.youtube.com/watch?v=RmXAUUaXdLQ
https://www.youtube.com/watch?v=vmVa-35Nvpo
https://www.youtube.com/watch?v=lQc_zhbaXdI
Thank you, b_jim !! :)
And this one :
https://www.youtube.com/watch?v=Te4gH_FKHus
And maybe another one...
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Some YouTube videos by Dr. Komisaruk:
http://m.youtube.com/results?q=barry%20komisaruk&sm=3
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And this one :
https://www.youtube.com/watch?v=Te4gH_FKHus
And maybe another one...
Thanks again for finding and sharing with the forum Dr Lakshmin's videos, b_jim!! :)
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Some YouTube videos by Dr. Komisaruk:
http://m.youtube.com/results?q=barry%20komisaruk&sm=3
Thanks, now we met the two doctors working on the subject and we have an idea on their personalities.
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Some YouTube videos by Dr. Komisaruk:
http://m.youtube.com/results?q=barry%20komisaruk&sm=3
Thanks, now we met the two doctors working on the subject and we have an idea on their personalities.
And Dr Eleni Frangos, Ph.D., Rutgers-POIS 3rd Member, recently defended her dissertation -- so we have 3 doctors on the Team!
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Thanks for posting the videos Demo. Look forward to watching the "light viewing" over the weekend.
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Colm, thank you!
However, you are solely responsible for the quality & quantity of popcorn you consume. :)
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Am sure it'll be a large
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Some YouTube videos by Dr. Komisaruk:
http://m.youtube.com/results?q=barry%20komisaruk&sm=3
Thanks, now we met the two doctors working on the subject and we have an idea on their personalities.
Exactly, I thought the same thing. Thanks for sharing the videos & pictures with us! They are very helpful for those of us who won't be there or live too far.
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...You are solely responsible for the quality & quantity of popcorn you consume. :)
Am sure it'll be a large
As you requested, Sir:
(http://www.macskettlecorn.com/images/popcorn.gif)
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Thanks Demo,
I just had an image (gif) to post here, but is it because of upgrade, I can't see how to post an image?
I was able to post an image on last forum version I remember. Any tip how you did ?
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Colm, send me the gif and I'll send it back to you ready-to-post.
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Would do, except the inmessage feature doesn't allow an attachment.
I will try demografx@poiscenter.com
Can you let me know if my test email gets to you, because that bounced back to me last time I used it.
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Would do, except the inmessage feature doesn't allow an attachment.
I will try demografx@poiscenter.com
Can you let me know if my test email gets to you, because that bounced back to me last time I used it.
Yes, that demografx@poiscenter.com just bounces back to me
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Yes, that demografx@poiscenter.com just bounces back to me
I alerted our Director of Bounce Backs (Daveman:))
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Thanks Demo,
I just had an image (gif) to post here, but is it because of upgrade, I can't see how to post an image?
I was able to post an image on last forum version I remember. Any tip how you did ?
When you reply to a post, below the edit window, look for attach-> Select File. Like I just did
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Thanks Demo,
I just had an image (gif) to post here, but is it because of upgrade, I can't see how to post an image?
I was able to post an image on last forum version I remember. Any tip how you did ?
What Demo does is he goes to www.photobucket.com. You can upload images there. Once they are uploaded, you can create a URL to show them. Include that URL in your post.
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As you requested, Sir:
(http://www.macskettlecorn.com/images/popcorn.gif)
Thanks Demo,
Some thoughts ...
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/CE375F43-56B3-4EB0-9609-CC13121D24EE.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/43F7EBCA-4C09-4952-87FC-EE6C637E86F9.jpg)
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Note To Rutgers Approval Board.
This was only a joke, the Double D's won't be in together !
Dedicated to all the brave guys who do get in there...
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Note To Rutgers Approval Board.
This was only a joke, the Double D's won't be in together !
Dedicated to all the brave guys who do get in there...
(http://1.bp.blogspot.com/-Nlm40onjl4o/U7qwGseZUbI/AAAAAAAAFvc/DD4BZ69l7C4/s1600/Whew2.png)
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LOL on the "Whew"
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Thanks ! Reminds me, anyone see smileys in upgrade?
I can only do :)
: ) but no space
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Colm --
LOL!!!!!!!!!!
Stef
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Bookmark your POISCenter RSS for
your iPhone:
http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom
OR
http://tinyurl.com/kxtbx6a
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Colm --
LOL!!!!!!!!!!
Stef
Stef! Where's your sympathy for me & Daveman????
;D
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;D
; D no space (for you to make this smiley).
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Has anyone seen smileys in our POISCenter upgrade?
I can also do :) How?:
: ) but no space
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Sorry for indiscreet question, sweaty do you have eggs after orgasm? I just have sweaty, and unpleasant smell. Is it OK? Once again sorry for the stupid question
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Sorry for indiscreet question, sweaty do you have eggs after orgasm? I just have sweaty, and unpleasant smell. Is it OK? Once again sorry for the stupid question
Eggs??????????
(http://fitnessandhealthadvisor.com/wp-content/uploads/2014/01/eggs2.jpg)
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(http://www.doctorsarestupid.com/wp-content/uploads/2013/02/DoctorsareStupidmain.png)
...when it comes to POIS!....
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(http://www.doctorsarestupid.com/wp-content/uploads/2013/02/DoctorsareStupidmain.png)
...when it comes to POIS!....
I love it demo! So true!
And
http://www.youtube.com/watch?v=3a7cHPy04s8
I can't get no Satisfaction! The Stones hit it one the nose!
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Sorry for indiscreet question, sweaty do you have eggs after orgasm? I just have sweaty, and unpleasant smell. Is it OK? Once again sorry for the stupid question
That was a machine translation of something that means "Are your testicles sweaty after orgasm?"
-
HOW TO POST GRAPHIC IMAGES (including animated ones) --
Thanks Demo,
I just had an image (gif) to post here, but is it because of upgrade, I can't see how to post an image?
I was able to post an image on last forum version I remember. Any tip how you did ?
What Demo does is he goes to www.photobucket.com. You can upload images there. Once they are uploaded, you can create a URL to show them. Include that URL in your post.
I just want to add :
Surround ***any*** graphic-URL (e.g., from Google Images, or from photobucket as Daveman mentions above) as follows...
Before the URL:
[img width=400 height=400]
After the URL:
[ / i m g ] <<<< but *remove* the spaces (spacing is the only way I could post this instruction).
If necessary, adjust your width and height after viewing above in "Preview".
Then..." Post" (or "Save")! :)
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SENT PM AND POSTED CAN ANYONE CONTACT NATHAN?
S U I C I D E N O T E NATHAN POSTED AT NAKED SCIENCE FORUM. HE ASKED TO POST THIS AT POISCENTER
Hello friends,
I decided to suicide myself as I am not able to tolerate the life. This is my death note. If I provide my death note to people in my city, no body would believe what I am saying. That’s why I am providing my death note to this forum, so that atleast you guys would trust what I a a m saying and there would be a peace to my soul. Reason for sucide is as below
As posted in my previous post, people in my city are though that I am gay and they are spreading the message to all the people in the city. Further, my parents, my friends, my boss, my colleagues are under the assumption that I am Gay. With add to this, from the past several years, I am helping others too much and I am taking extra care of so many people and I am soft corner to all the people. Why I am doing this, for each help / each extra care / each soft care taking to others, I am praying with my god is that god please cure my POIS and see how I am helping to others. But people around me incluing my parents, my boss, my friends, thought that I am a gay and due to this, I am helping so much to others. But factually, as explained above, I am helping other because, I want to show god that how I am helping everyone and also with intention of my future business plant. Due to this my too much helping nature along with POIS symptoms, people misunderstand me and they thought that I am a gay. Initially, I have around 500 people who had trusted me. But as of now, I not had even a single person who will trust me. I not done even a single mistake / harm to others and not seen any of them sexually except for one girl I loved her and later as she rejected had a quarrel with her and told many lies in this area and also I not taken care my parents and neglected them. Apart from this, I have not done a single mistake / error / bad behaviour in past 6 years of life.
However, I confess that in my childhood, i.e. around 10 years back, I have done few mistakes in my life and I realized those mistakes and I never did such a mistake. As explained in my previous post, my astrologer has identified my childhood bad behaviour and he believed that I carrying that behaviour now also and spreaded bad message to my family. He not understand how I changed from 2005 and doing only good things in life and not at all scold any one even if they do any wrong thing, how helpful to others in teaching, giving jobs, giving money, solving problems without any much expectation except praying god for my care and also my future business help.
But, to all the people to whom I had helped, not understanding me. That’s why I came to a conclusion that people like me i.e. very sincere, honest, good, too much caring person is not possible to live in this commercial life, as people had different thing in thier mind and even thgough I had done good work with the intention, would not understand. Thats’s why I am realized that I am become too much honest and it is not possible to live in this world and also not possible to facIe POIS. After my POIS cure, I had a dream of helping orphans. But now, I am leaving my life without achieving my objective i.e. to help orphans and unfortunately, now I am dying as a orphan even though I had so much of friends, parents etc and it is not of any one’s mistake. I also acknowledge my friends reaction to my behaviour as they are normaly commercial people and not abnormal like me where I helped too much to all that one no body would do in this era. So, I felt, my fate is not good and due to this, I am leaving my life at this young age of 26 and my death day is tomorrow late night i.e. between 25th and 26th morning or 26th afternoon.
Further, people, due you know how I am going to die, I would take the tablets which I had experimented on body to cure my POIS and this time I would take bundled of tablets to die. 100% I know that I would go directly only to heaven as I have done so much of help to others. However, people in my city would believe that I would go directly to helll as they completely mis-understood me and god only knows my behaviour and what I am and why I am helping so much to others and because of my honest behaviour he is calling very early in my life
Further, while writing this and also while taking the tablets, I would be extremely happy and not at all sad as I am going to add and further I am satisfying so many people’s wish as they want me to die. If I give this death note to my people, no body would trut, that’s why I am giving this note to this forum, so that atleast you would trust. I am humbly requesting you to pray for my soul to go directly to god and also, please pass this message to poiscenter.com.
Unfortunately, I am leaving you people in the middle of the POIS research, sorry for the same as I promised so many people that I would be a part of the POIS cure team and I pray god to excuse for this mistake of me.
Thanking you,
Nathan
www.suicidepreventionlifeline.org/
Nathan, P L E A S E call
1-800-273-TALK (8255) you'll be
CALL US
08457 90 90 90 * (UK)
connected to a skilled, trained counselor!
We are not professionally equipped to help here!
Best,
Demo
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Oh God! Please don't do it man!
I understand, I was there 2months ago and hospitalized for it, and came back from the mindset and am working my ass off every day!
Please get help Nathan! And talk to us. We will all wk on it together to the extent we can.
Dr. Christine Hyde in NJ is a Sex therapist I see who can and will help. She has had two other guys w/ POIS beside myself.
I hope your OK man. Please!
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Thank you, Andy!!
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Sorry for indiscreet question, sweaty do you have eggs after orgasm? I just have sweaty, and unpleasant smell. Is it OK? Once again sorry for the stupid question
That was a machine translation of something that means "Are your testicles sweaty after orgasm?"
Thanks for clarifying, deskmoret!
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There's no need to end your life early Nathan. Life's short enough already! Enjoy life as much as possible and avoid or ignore those that piss you off. Only be around people you like and are comfortable with. Also, if people you know get upset because you're helping others too much, then they're what most people would refer to as: total MORONS! Who would be mad at someone who helps people!? People with room-temperature IQs, that's who.
You can consider moving to a new city if everyone is so mean to you all the time. Just don't make suicide an option because it's not worth it. Enjoy living life, make new friends and have a good time!
Prancer
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Prancer, thank you !
As a representative post from poiscenter, I'm cross-posting your post directly above -- at NSF - POIS. Because that's where Nathan posted his statement .
But if you wish, just let me know & I'll delete it if you don't want it posted there. I posted it in bold-red type .
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Taken when I was heading to see Dr. Komisaruk at Rutgers: some boring pics :)
Taxi from Upper West Side NYC to Penn Station midtown:
(http://i858.photobucket.com/albums/ab143/demografx/CD962BE9-A6ED-4898-A290-EC6793DD890D.jpg)
After a 15-minute Amtrak train ride from Penn Station Manhattan, I arrived at "Newark Penn Station", within walking distance to Dr . Komisaruk's office at Rutgers Univ. Smith Hall. The Hilton Hotel is also nearby .
(http://i858.photobucket.com/albums/ab143/demografx/26C07C35-A782-43CA-8656-0F6CF7AF9EFB.jpg)
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Prancer, thank you !
As a representative post from poiscenter, I'm cross-posting your post directly above -- at NSF - POIS. Because that's where Nathan posted his statement .
But if you wish, just let me know & I'll delete it if you don't want it posted there. I posted it in bold-red type .
:) No problem Demo - thanks! I hope he sees it and feels better.
And great pics! Thanks for sharing them. It brings us there!
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Where I come from, some people believe in astrology. Some seriously. I am not one of them, so I cannot talk to you Nathan as someone who understands it.
But I will tell you I live in a place where people aren't ashamed of being gay, or often have awkward but usually funny conversations with people who thought someone was gay but were mistaken! I have friends who are gay, and they all are accepted by MANY people, and MANY people think they are COURAGEOUS people for being openly gay!
I actually recently had a neighbor not far up the street from me speak to my roommate about me. My roommate is a man, and I rent from him, and most of the time people just see our cars in the driveway. My roommate has a girlfriend who lives 2 hours away by car, and she rarely stays at our home but instead my roommate travels to her. So naturally our neighbor was curious, and asked if I were my roommate's "partner"! It was a pure, innocent question, and my roommate got a little embarrassed, but he explained the situation and he and the neighbor had a good laugh! I did too, when my roommate told me the story! People are changing, and they recognize that not everyone is heterosexual, and our neighbor was one of the brave ones to try and invite us to tell them we were gay if we were. We are not, but I am proud of my neighbor for not stigmatizing being gay!
It's a shame people still think of people as "a gay", like they are something so different, like "a black", "a white". I believe, and with good evidence and reason, that being gay is NOT A CHOICE, and that it is something you are not responsible. I did not choose to be straight! Life made me that way. Life made a few of my friends gay, they don't have a choice in this! So there is no way to feel guilty or shameful, there is no way to be different, and NO REASON TO!
So, if you, or anyone else here are being harassed for being gay, KNOW WHAT YOU BELIEVE YOURSELF TO BE AND BE PROUD OF IT. YOU WERE BORN THAT WAY!
Nathan, I really do hope you are reading this. I've lost friends before this way, and seen friends saved from an ending like this. You, and anyone else reading this, I AM PROUD TO BE ASSOCIATED WITH ALL YOU BRAVE MEN WHO ARE FIGHTING THIS ILLNESS, STRAIGHT OR GAY, WHITE TO BLACK, CRAZY OR CALM! I TAKE SOLACE KNOWING I AM NOT ALONE IN MY PAIN, AND KNOW I SUPPORT YOU ALL!
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Thanks, Nightingale!
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Thanks again, Prancer, I almost didn't post the pics -- thinking you might not be interested.
Glad I was wrong! :)
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Thanks again, Prancer, I almost didn't post the pics -- thinking you might not be interested.
Glad I was wrong! :)
Nope, I think it's great! Picture b-roll! Makes us feel like we're right there.
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This song and lyrics inspire me to fight on and enjoy the subtleties of life when POIS gets me down. For me this song is overwhelmingly positive. The artist is the alt-rock/art-rock band Tool. Enjoy, and I hope it is inspiring or helpful.
http://www.youtube.com/watch?v=EDlC7oG_2W4
"Lateralus"
Black then white are all I see in my infancy.
red and yellow then came to be, reaching out to me.
lets me see.
As below, so above and beyond, I imagine
drawn beyond the lines of reason.
Push the envelope. Watch it bend.
Over thinking, over analyzing separates the body from the mind.
Withering my intuition, missing opportunities and I must
Feed my will to feel my moment drawing way outside the lines.
Black then white are all I see in my infancy.
red and yellow then came to be, reaching out to me.
lets me see there is so much more
and beckons me to look through to these infinite possibilities.
As below, so above and beyond, I imagine
drawn outside the lines of reason.
Push the envelope. Watch it bend.
Over thinking, over analyzing separates the body from the mind.
Withering my intuition leaving all these opportunities behind.
Feed my will to feel this moment urging me to cross the line.
Reaching out to embrace the random.
Reaching out to embrace whatever may come.
I embrace my desire to
feel the rhythm, to feel connected
enough to step aside and weep like a widow
to feel inspired, to fathom the power,
to witness the beauty, to bathe in the fountain,
to swing on the spiral
of our divinity and still be a human.
With my feet upon the ground I lose myself
between the sounds and open wide to suck it in.
I feel it move across my skin.
I'm reaching up and reaching out.
I'm reaching for the random or what ever will bewilder me.
And following our will and wind we may just go where no one's been.
We'll ride the spiral to the end and may just go where no one's been.
Spiral out. Keep going...
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Very nice, Andy!
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Rutgers' fMRI "Preparation Room "
(I can hear Stef going ;D )
(http://i858.photobucket.com/albums/ab143/demografx/A65FE6C5-C7C2-45D3-B809-A32AFEBF0B3B.jpg)
BYOP
(Bring Your Own Playboys or Penthouses or "whatever tickles your fancy" :) )
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Very nice, Andy!
Thank you Andy! Will have to listen to it in the "preparation room"
I'm Glad you guys enjoyed. :) My fav song..
Hey what are you guys doing w/ the neuroscientist specifically?
Is there a link explaining the research... Or is it just in the grant section of the forum which explains?
An aside- I have been talking to my docs and I am going to get PT for Chronic Pelvic Pain Syndrome (CPPS), which I think is intertwined w/ my POIS at this point, and will most likely help (since in my case I have finally linked my nebulous POIS pain, and even neuro-symptoms to a more acute pain in the perineum). I wonder if it is a case of chicken or the egg w/ the two syndromes. Thoughts..
There is a forum for guys who experience this pain in relation to ED called http://forum.hardflaccid.org/
Tell me what you guys think. Have you heard of this condition related to POIS before?
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Rutgers' fMRI "Preparation Room "
(I can hear Stef going ;D )
(http://i858.photobucket.com/albums/ab143/demografx/A65FE6C5-C7C2-45D3-B809-A32AFEBF0B3B.jpg)
BYOP
(Bring Your Own Playboys or Penthouses or "whatever tickles your fancy" :) )
Sounds like you got polish your weapon in one room then run to the fMRI room before you explode. I hope there is not a hallway in-between the rooms.
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LOL, FB!!!!
;D
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...I hope there is not a hallway in-between the rooms.
Nope.
Direct access :)
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So do you know when the research will take place?
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Waiting for Rutgers' IRB final approval. Keep in mind we're "human subjects", and they must insure our MEDICAL SAFETY.
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Rutgers' fMRI "Preparation Room "
(I can hear Stef going ;D )
(http://i858.photobucket.com/albums/ab143/demografx/A65FE6C5-C7C2-45D3-B809-A32AFEBF0B3B.jpg)
BYOP
(Bring Your Own Playboys or Penthouses or "whatever tickles your fancy" :) )
Sounds like you got polish your weapon in one room then run to the fMRI room before you explode. I hope there is not a hallway in-between the rooms.
Wow, can't wait to chat up that good looking lamp in the corner. See where it goes from there. Maybe light up a cigarette when it's all over. Hang out in the shade !
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Rutgers' fMRI "Preparation Room "
(I can hear Stef going ;D )
(http://i858.photobucket.com/albums/ab143/demografx/A65FE6C5-C7C2-45D3-B809-A32AFEBF0B3B.jpg)
BYOP
(Bring Your Own Playboys or Penthouses or "whatever tickles your fancy" :) )
Sounds like you got polish your weapon in one room then run to the fMRI room before you explode. I hope there is not a hallway in-between the rooms.
Wow, can't wait to chat up that good looking lamp in the corner. See where it goes from there. Maybe light up a cigarette when it's all over. Hang out in the shade !
LOL, Floppy and Colm!!!
(And of course -- a round of applause to demo -- for actually posting the pic)!!
Ahem...judging by the decor -- I think that prep room could use a woman's touch.
Stef
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Oh, c''mon, Stef, you don't like the fine artwork on the walls? ;D
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"Preparation Room" might also be used for interviews.
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Someone has good news about Nathan ? I send him a private message to encourage him but he didn't answer. We can't do much more behind a computer screen.
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Hey what are you guys doing w/ the neuroscientist specifically?
Is there a link explaining the research... Or is it just in the grant section of the forum which explains?
Hi, Andy451,
Dr. K's grant outline is still in the hands of the Rutgers IRB Committee, so the details are still not set in stone. However, demo and Daveman had posted initial draft papers, provided by Dr. Komisaruk, related to the "Informed Consent" for the study. They had been posted on this site, but when those technical problems recently occurred, I believe these papers got deleted from this site (along with other various posts in that particular thread).
Daveman had set up an interim site (due to concern that poiscenter.com might no longer be an appropriate domain). Fortunately, the poiscenter technical problems have been resolved.
In the meantime -- you can find those initial papers at that interim site --
https://groups.google.com/forum/?hl=en#!topic/poiscenter/QzLxGvHAFZk.
The 7/12 post by Daveman, titled, "POIS Research - Dr. B. Komisaruk," will provide you with those papers. While not the final paperwork, they'll at least provide the general outline of the study.
Hope this answers your question!
Stef
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Thank you, Stef !
On my iphone the link's attachments are blank but they "come alive" once I tap there with my finger!
Informed Consent does a good job of outlining the study.
Re-posting below
-
(http://i858.photobucket.com/albums/ab143/demografx/C971CC87-6C6E-4F4C-B14A-B521D29CB6CC.jpg)
-
(http://i858.photobucket.com/albums/ab143/demografx/71B330FB-9147-44B5-973A-A1BFBC4FA276.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/290D049C-8667-4539-934D-E74A6A655E4D.jpg)
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Your thoughts, questions , comments on the
above are invited,
as we approach the final approval of
Rutgers' IRB that this Study is
SAFE for all POISers! :)
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Hi Demo,
In the other thread which got lost there was an excel questionnaire which we added some builds to. Have you got that one?
I for one would like to get the questionnaire finalised so we can complete it ASAP so when we get approval to commence the study the forms are ready.
Thanks - FloppyB
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Hi Demo,
In the other thread which got lost there was an excel questionnaire which we added some builds to. Have you got that one?
I for one would like to get the questionnaire finalised so we can complete it ASAP so when we get approval to commence the study the forms are ready.
Thanks - FloppyB
THIS ONE FLOPPY?
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/41E4AC5C-5EB2-43C6-B095-83BBA2A35E0E.jpg)
(http://i858.photobucket.com/albums/ab143/demografx/5E2F7988-7514-45E9-BAB6-DD2709672EBF.jpg)
Two of the Rutgers-POIS questionnaire forms.
Comments? Thoughts? Questions ?
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repeat of earlier post
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/2014-01/D173F39D-20C2-413B-9547-4E6094434F9C.jpg)
Per Dr. Komisaruk's recent email to me: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."
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Interesting... My symptoms are mostly cognitive so I'd be curious to know how a removable vagal stimulator would help.
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On Aug 2, 2014, at 8:52 AM, "Barry R. Komisaruk" <brk@psychology.rutgers.edu> wrote:
Dear All,
The Rutgers IRB panel meets on September 3, so I should have word shortly
thereafter if the protocol is approved. I will keep you posted as soon as
I hear.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102
phone (office): 973 353 3941
phone (mobile): 973 462 0178
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Hi Demo,
Thanks for the update. Will we be able to submit our applications for the study prior to this?
FloppyB
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Ok, September 3rd. Thanks for the update.
Just a quick poll, how many people right now are thinking of going to participate in the trial? I definitely am hoping to participate!
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Hi Demo,
Thanks for the update. Will we be able to submit our applications for the study prior to this?
FloppyB
FB, I think Rutgers IRB has to put their stamp of approval on using human subjects for POIS research before Dr Komisaruk can accept applications.
Maybe Stef can confirm this?
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Ok, September 3rd. Thanks for the update.
Just a quick poll, how many people right now are thinking of going to participate in the trial? I definitely am hoping to participate!
Nightingale, thanks again for leading the pack and volunteering!
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WE HAD A TECHNICAL INTERRUPTION. Sorry!
PLEASE POST "!" IF YOU CAN SEE THIS OK.
Thanks!
Demo
-
WE HAD A TECHNICAL INTERRUPTION. Sorry!
PLEASE POST "!" IF YOU CAN SEE THIS OK.
Thanks!
Demo
"!"
Stef
-
Thank you, Stef!!!!
-
(http://i858.photobucket.com/albums/ab143/demografx/E37FAA45-6383-4726-B9CB-882554CD6F73.jpg)
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Hi Demo,
Thanks for the update. Will we be able to submit our applications for the study prior to this?
FloppyB
FB, I think Rutgers IRB has to put their stamp of approval on using human subjects for POIS research before Dr Komisaruk can accept applications.
Maybe Stef can confirm this?
Demo is correct. The paperwork for the study is still with the Rutgers IRB committee. Dr. Komisaruk will provide the official application, once it all has been approved.
Stef
-
PLEASE BOOKMARK THIS SITE:
http://tinyurl.com/ocmgfwh
As we all know, this site (poiscenter.com)
can be quirky,
so please go to this GoogleGroups site if
you ever experience any major difficulty with
this POISCenter site!
Best wishes for YOUR POIS-free future!
Demo & Daveman
-
Hi all,
Good news, I've just read in the nakedscientist forum that Nathan has survived from his suicide attempt. And he is back with good will to fight again.
Let's welcome Nathan
Keep it up Nathan !
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Hi all,
Good news, I've just read in the nakedscientist forum that Nathan has survived from his suicide attempt. And he is back with good will to fight again.
Let's welcome Nathan
Keep it up Nathan !
Yay!
Thanks, Jimmy!
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Posted at Naked Science Forum - POIS thread:
Hello all,
As explained in my previous post, I attempted for bad thing [suicide] on 26th, after taking those tablets, I realized importance of my life and our goal to remove POIS. Fortunately, I survived from my attempt and I was in ICU for two days and now back to normal life. Presently praying god for a good job as I lost my previous job. Thanks for the support provided to me. I would be back again on trying things for cure at the earliest.
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Posted at Naked Science Forum - POIS thread:
Hello all,
As explained in my previous post, I attempted for bad thing [suicide] on 26th, after taking those tablets, I realized importance of my life and our goal to remove POIS. Fortunately, I survived from my attempt and I was in ICU for two days and now back to normal life. Presently praying god for a good job as I lost my previous job. Thanks for the support provided to me. I would be back again on trying things for cure at the earliest.
All right!! This is awesome to hear. I'm so glad Nathan is okay, and I hope everything stays that way for him. :) Keep strong Nathan!
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Recovered from "The Lost Thread"! (Thanks
to Stef!!)
Dear Barry [from Demo],
I won't keep sending these but I wanted you to see the beginning of this new thread:
Pages: [1]
Author Topic: Progress report re: POIS study (Read 49 times)
Stef
Full Member
Posts: 212
Progress report re: POIS study
« on: Today at 12:45:46 AM »
Hi All,
I'm helping demo and Daveman by posting this brief progress report about the POIS study. There's only good news!
First, Dr. Komisaruk's study is still under review with the Rutgers IRB committee, and there's just no way to speed up this process. Having administered the grant program at NORD for eight years, I can comfortably advise that this is the norm. It's the IRB approval that slows down the start of a research study (but only in the period before the study begins), and these reviews often don't go as quickly as predicted. Every detail -- every single step of Dr. K's a proposed study -- is being scrutinized by the Rutgers IRB. Questions are raised, they must be answered (via email)...changes are made, and then more questions and clarification is required...and so on -- until it's all worked out (which will happen all of a sudden!).
The IRB is charged with assuring the safety and protection of all "human subjects" -- so it has to be a very painstaking process.
Second, demo and Daveman have invited me to participate in their email discussions with Dr. Komisaruk. Having now communicated with Dr. K one-on-one, this is what I want you to know -- you men have got the most INCREDIBLE scientist/humanitarian behind you!!! Dr. Komisaruk understands the misery of POIS -- he gets it! He absolutely cares about the suffering induced by POIS, and he understands that many (if not most) of you have had some awful experiences with physicians in the past.
Dr. K's got your back...there's not a single doubt about it. So please try to bear with the slow-going of the Rutgers IRB approval. It will be have been worth the wait!
Third, demo and/or Daveman will be posting some paperwork at Dr. K's request -- probably in the next 24 hours. He'd like to receive some input from the group about this paperwork. One section is a personal history questionnaire, and the other is the Informed Consent. They are both still only drafts -- under review by the Rutgers IRB -- and Dr. K. wants to know from you if you feel that the information is clear, does the personal history section basically cover the important facts, do you have any suggestions, etc.
(If I could have figured out how to attach these pages, they'd be here right now. But IT is definitely not my strong point -- so demo and/or Daveman will post it.)
So, that's the progress to date. It might not sound like a lot of progress -- but there is a ton of behind-the-scenes activity going on -- and there's definitely progress!
The best thing about it all is that you've got Dr. Barry Komisaruk in your corner. (It really was terrific that demo met with him -- he spoke for all of you and provided Dr. K with invaluable information about the POIS experience. Dr. K. will have your welfare at the forefront of this study.
That's it for now. Soon you'll be hearing from one or both of your moderators.
Stay strong!
Stef
Report to moderator 32.216.68.100 (?)
sameer7777
Sr. Member
Posts: 445
Kik me "sameeraffandi"
Re: Progress report re: POIS study
« Reply #1 on: Today at 05:45:52 AM »
Thank you much stef !!!
It's relief to read this .
Thanks again desperately waiting for some good news ....
Take care
Report to moderator 115.186.121.120 (?)
We should intereact more plzzzzz
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Samir
Full Member
Posts: 120
POIS victim since 1988
Re: Progress report re: POIS study
« Reply #2 on: Today at 07:32:03 AM »
It has been quite a while that I have checked-in here at POIS center, but am very, very glad to hear this study is underway. POIS has basically run my life in the last two years and I was ready to give up. Thank you for the hope.
Report to moderator 8.30.242.101 (?)
lith65
Newbie
Posts: 15
Re: Progress report re: POIS study
« Reply #3 on: Today at 08:24:56 AM »
I'm so happy this is being done. Hopefully, we'll get to the bottom of POIS and figure out WHY we have it. More importantly, how we can cure it.
Report to moderator 50.132.126.130 (?)
Daveman
Administrator
Hero Member
Posts: 1551
Re: Progress report re: POIS study
« Reply #4 on: Today at 08:51:38 AM »
Hi all,
Sorry that I have been so "out of touch"! However I have been there in the background, especially following up with Dr. Komisaruk and in regular communication with Demo and Stef. I have had problems answering a few PMs, with some sort of technical error, that I haven't been able to sort out.
I am starting a new and rather complex business, and am now working 12 hrs. per day, 7 days per week. It's all I can do to delete spammers. BTW, if anyone sees this garbage, please PM me with the info. (press the report to moderator button).
Very exciting with the testing program development. As Stef says, there is a lot of red tape and it all has to do with making sure that 1) the testing is safe and ethical, 2) that methods are congruent with propar medical practices etc. This all helps to assure that the best possible information can be rescued from the testing "even if the results are not completely congruent with the hypothesis.
It has been evident, during Demos visit that Dr. Komisaruk and team have not been sitting on their hynies while we wait. you don't put a testing program together without making sure all your ducks are in a row. For the most part, the IRB revision, as I understand it, has more to do with your protection, and assuring precise and correct procedures for following through with a testing program. But the medical team is responsible for making sure that the procedures produce something of value for our cause. They align their specialty with what they learn about POIS. This forum and your input has helped a great deal to align the reality of POIS to the procedures that they wish to employ. Of course they are very well aware of all other POIS studies.
Of course they start with a supposition, but it is evident that they are considering as well, that even if the tests don't prove the hypothesis, that there should be information produced that will at least characterize POIS in a scientific and recognizable fashion.
That is, that at the very least, we should come out of this with something that helps show that we are not imagining this, and something that other doctors will have to appreciate.
All that said, I have to admit that I was not super enthiused about the concept, of the vagal nerving having much to do with the POIS cause. We each have our own feel for what is happening in our bodies, and certain "theories" ring truer than others. In the end there are so many different things that can cause the same symptoms, and and so many different syndromes that seem very simlar to POIS with differing root causes that it is next to impossible just based on how we feel (and several hours on internet) to know what is really going on.
I didn't see a relation for instance between the "gutural influence" of the vagus nerve and cognitive effects. But as I experience my POIS with the "vagal perspective", and see and understand more about the vagus nerve, it has become much more evident. The vagus nerve is a cranial nerve, no less!! I personally have seen how stimulation of this nerve has steadied my heart rythms for instance. I tend to have arythmias, especially during POIS (hmmm one big indicator as I understand it for vagal influence). Sometimes when these arythmias become a "bother", I massage the carotid area, near the two arteries on either side of the throat (where the vagus nerve passes), and the arythmias calm and stop, almost instantly. But the vagal nerve has a much farther reaching domain. and if I understand correctly, Dr. Komisaruk has identified regions of influence of this nerve that hadn't earlier been discovered. They may correct me if I am wrong. With fMRI, we will be able to see, changes in the brain associated to vagal effects.
In any case, whether the vagus nerve is central or not, we don't know... that is the reason for the research, however the suspicion is there and coming from someone who has a better feel than most. If it is not central, it is certainly influenced, I have no doubts about that, and if it is influenced, we should come out of this with reasons why and or how. That should be worth something!
And please, if I am not helping to make you all feel certain about a positive result, it's because only the testing can do that. It wouldn't be fair for me or anyone to tell you that this IS the solution. There does seem to be a lot of medical reasons why we are heading in a good direction though.
I am clarifying one last doubt in the documentation that we will be posting. After this post though, I will make another post with the personal history questionaire, then followed by the informed consent.
Demo has some photos he took while there as well, of the fMRI machine at least.
So work in progress. The forms and documents that we post, are all part of the begining of the program. We look for your input, and information will be processed from here on in.
« Last Edit: Today at 08:59:47 AM by Daveman » Report to moderator 186.10.123.124 (?)
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
Daveman
Administrator
Hero Member
Posts: 1551
Re: Progress report re: POIS study
« Reply #5 on: Today at 09:17:51 AM »
If there are any comments let us know.
Here is one page. The other one coming.
Lets revise them first. To actually print them, right click over the image and copy URL. Later view the URL in your browser and print screen.
Sorry it's so complex. The limit for attachments is 195K.
« Last Edit: Today at 09:55:35 AM by Daveman » Report to moderator 186.10.123.124 (?)
WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!
demografx
Administrator
Hero Member
Posts: 1475
Re: Progress report re: POIS study
« Reply #6 on: Today at 09:58:30 AM »
Quote from: Daveman on Today at 09:17:51 AM
If there are any comments let us know.
Here is one page. The other one coming.
Lets revise them first. To actually print them, right click over the image and copy URL. Later view the URL in your browser and print screen.
Sorry it's so complex. The limit for attachments is 195K.
Here is the other...
Demo
Report to moderator 23.243.21.79 (?)
Nearly POIS-free symptomatically, treatment consisting mainly of daily testosterone patches.
Please check out fertility risks carefully with your doctor if you're interested.
30+ years of severe 4-day POIS episodes, married, raised a family, started a business -
Samir
Full Member
Posts: 120
POIS victim since 1988
Re: Progress report re: POIS study
« Reply #7 on: Today at 10:05:52 AM »
I think it will be critical to list any other conditions that are tested and confirmed--diabetes, high blood pressure, etc.
Report to moderator 8.30.242.101 (?)
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Wonderful, wonderful!
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:)
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Fantastic!
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Thanks , Myers!!!
And Nightingale!!!
:)
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...at the very least, we should come out of this [POIS study] with something that helps show that we are not imagining this, and something that other doctors will have to appreciate...
...whether the vagus nerve is central or not [to POIS], we don't know... that is the reason for the research, however the suspicion is there and coming from someone who has a better feel than most.
If it is not central, it is certainly influenced, I have no doubts about that, and if it is influenced, we should come out of this with reasons why and or how.
That should be worth something!
Absolutely, Daveman!
Also, we will have established POIS as a credible medical study target -- with ***MORE POI$ funding*** possibilities -- than ever before! -- from larger government, nonprofit as well as commercial sources.
:)
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...at the very least, we should come out of this [POIS study] with something that helps show that we are not imagining this, and something that other doctors will have to appreciate...
...whether the vagus nerve is central or not [to POIS], we don't know... that is the reason for the research, however the suspicion is there and coming from someone who has a better feel than most.
If it is not central, it is certainly influenced, I have no doubts about that, and if it is influenced, we should come out of this with reasons why and or how.
That should be worth something!
Absolutely, Daveman!
Also, we will have established POIS as a credible medical study target -- with ***MORE POI$ funding*** possibilities -- than ever before! -- from larger government, nonprofit as well as commercial sources.
:)
Yeah, really great points! :)
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Welcome, Shinjiro ! :)
Check out some POIS resources at our Welcome Pages:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
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re-posted...
The official study name/title of our Rutgers
Orgasm Lab's
research of POISCenter volunteers:
"Is POIS a Case of Vagal Dystonia?:
An fMRI Brain Activity Analysis"
Definition of Dystonia
Dystonia is a general term used to describe a range of muscle disorders, including extended muscle spasms, contractions, tremors and other involuntary movements. The patient has twisting body movements, tremor and unusual or awkward postures. Dystonia may affect the whole body, or only a specific area or region of the body. Symptoms are often linked to repetitive or prolonged and strenuous tasks, such as writer’s cramp, or it may be observed in association with the taking of certain medications. Dystonia is considered to be a neurological condition.
More Information Online:
http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php
THE VAGUS NERVE
The vagus nerve is the longest of all our cranial nerves and creates a direct connection between our brain and our gut. Vagus means "wandering" and this important nerve travels from the brain through many parts of the body, including the heart, lungs, stomach and ears. Among its functions is to provide vital information between the brain and the gut on how the body is digesting food. It also sends messages to the gut to contract the stomach and intestines to aid in this process.
The vagus nerve has also been shown to carry signals initiated by bacteria. Staphylococcus can attack the vagus nerve and induce vomiting. Salmonella infections have been shown to affect brain activity, a connection lost when the vagus nerve is severed.
(http://i858.photobucket.com/albums/ab143/demografx/F6805891-CF1E-4592-A578-CDFEB164C516.gif)
The Vagus Nerve will be the focus of the fMRI's. The Vagus nerve is hugely encompassing and connects from the brain to remote areas such as the digestive system as well as a large number of potential POIS-trouble spots!
(http://i858.photobucket.com/albums/ab143/demografx/C2ECDE49-9B2D-43D2-9DF2-ED7D32AF20E6.jpg)
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I won't be a POIS Study subject at Rutgers.
Why?
Because I would have to reduce ( perhaps temporarily eliminate!) my successful TRT POIS- treatment dramatically.)
I'm simply not willing to go back to "the bad old days of POIS"!
Hope you all understand ! :)
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Thank you, Shinjiro!
:) :)
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Interesting theory.
i have had acute pain right along the vegus nerve before and it is the most bizarre intense pain I have ever encountered. I was hospitalized, they thought I had an ulcer or pancreatic issues. The pain was immense.
I wonder why it it overactive or hypersensitive in my case though. I am starting to think there is pinched nerve or multiple from an old injury in my lower back which may force the vegus to along with others to be hypersensitive due to long term inflammation..?
I really don't know. But I do know I am in physical therapy right now for pelvic floor pain which I now know for a fact is connected to some of my more odd symptoms, which leads me to believe the immune response in pois is possible just due to long term inflammation in the nerves in an area where immunofactors are rampant (seminal fluid attacks other males sperm to secure reproduction in female, yet also attacks her immune system to fertilize). i bellive everyone is capable of a pois type reaction given the correct circumstances for an immune response to inflammation.
Years back when I had that vegus nerve trouble (acute), I was scuba diving before and had a 40lb tank on my lower back for two hrs, plus a 20lb weight belt pushing on my sacrum (lower back near tailbone). I went numb underwater w/ the combo of cold and what seemed like a back injury. At the same time i experienced hypothermia. My pois symptoms shot through the roof after this event.
The first year I had pois i almost broke my sacrum or tail bone. So I really do wonder how much of this may be physical causing an immune response....
Good stuff demo! ;)
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An aside worth mentioning with the info I provided.
I cannot move my lower back flexing forward right now with inducing mild to sever pois symptoms. So whether it's a pinched nerve or whatever; nerves are certainly involved in this mess.
I am standing as I type this and hope it makes sense, cuz I can barely see the screen being that I am 6ft 3 lol
:)
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An aside worth mentioning with the info I provided.
I cannot move my lower back flexing forward right now with inducing mild to sever pois symptoms. So whether it's a pinched nerve or whatever; nerves are certainly involved in this mess.
I am standing as I type this and hope it makes sense, cuz I can barely see the screen being that I am 6ft 3 lol
:)
Hi Andy,
I had taken to a change in my "treatment" as a result of necessity. Since I am "getting up there" 65, I have increasing erectile problems. So I needed to see how viagra would fit in with my niacin treatment. The two are not very compatible. The short story is that the change has had it's ups and downs.
The ups were that when it worked it was very little short of 100%. The downs, were several really, when it didn't work, it made it worse, and the viagra/niacin combo is very hard on the system.
During some of the down times, my POIS symptoms changed. I could see an underlying POIS feel, but with some symptoms stronger, others lighter, and almost like some new. But I began to recognize that the seeming new ones were just grand exaggerations of existing ones.
Recently I have been having increasing gastric problems, and I can see where the gastric problems feed-back to unbalance other systems, even affecting brain-fog and loss of concentration.
Today is an interesting example. I accidently had "unprotected sex" yesterday (No niacin, viagra or anything, first time in about 3 yrs). And my POIS is just as it used to be. But with all the recent gastric problems, there's a distinct reminiscence that had recently been exaggerated in my heightened gastric problems.
So I am increasingly becoming convinced that, although the vagus may or may not be causal, it's certainly central. I am certain that something will come of all of this.
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Daveman, thank you for your great confirmation that we're heading...SOMEWHERE!
:)
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I cannot move my lower back flexing forward right now with inducing mild to sever pois symptoms. So whether it's a pinched nerve or whatever; nerves are certainly involved in this mess.
Very, very curious. Very interesting. Think it adds to the nerve dystonia theory
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Daveman, thank you for your great confirmation that we're heading...SOMEWHERE!
:)
THANK YOU DAVEMAN! :)
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Guys ty for the input!
I have been doing some research and certainly have POTS along with POIS. Do u have symptoms of this, if so please describe
For myself, i think the two must be related. It is an autonomic-syndrome where blood pools in diff areas of the body depending on gravity, which may explain the pain with a blood pressure change and spasm experienced during orgasm, which whould overload a compromised autonomic system on multiple levels.
Look up POTS post tachacardial syndrome (spelling) and tell me what u guys think...
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My POTS-POIS theory may explain why beta blockers NSAID helps.
Its a POTS treameat and POIS. ALSO most wear panty hose or under armor pants with the syndome. Try it and see if it helps. I am trying the underarmor standing now and it seems to help at least a little.
Try not to change positions to fast (standing/ sitting... so on)
Niacin is a vasodialater and force your blood everwhere instead of pooling in cerain areas. Yoga and very specific exercise help. If we do not have the proper blood flow to our brain when aroused the effects can be jus as bizarre as pois.
Orgasms can be more or less intense with reduced or increased blood flow. Yet i wonder whether repeated low oxygen orgasms create POIS.
happy trails guys.. I hope Im onto something... Thx to u guys :)
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What would happen if you combined the effects of thes two states together over an extented time period? Perhaps some POIS? Im thinkin out loud and think there may be credence...
Check out the first link before you consider what i am infering in relation to the second one..
http://en.m.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome
http://en.m.wikipedia.org/wiki/Erotic_asphyxiaion
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I'm now experiencing pois symptoms upon standing and sitting especially when I lay on my belly and blood rushes to my ventricle side. At this point, I know it's been hours since my last post, and I have seen some of the past posts on POTS, I am certain POIS is a form of PoTS. Understand, what we experience is akin to an extended form of mild hypoxia. This can alter your thoughts and mess with everything, physical and pyschological, but it is not in our head. Soon, I will be seeing a POTS specialist and will explain POIS to him. Earlier, my under armor compression pants helped. Try and experiment guys - do you become aroused from simply laying on your belly? Because I do; it forces the blood to rush to your penis. If it is POTS, you're likely to experience an erections or arousal. This would also explain our delayed immunological/autonomic symtomology. Guys, try something else for me. Read about POTS, and try treating your symptoms like so. Don't stop the niacin, it probably works for that vwry reason. And yes, hormones are a big part of an autonomic response. #winning ;-) Guys, unless you're sleeping try not to stay still for so long it will surely help. Do breathing exercises when you change positions and it should surely help. Hang loose, stay relaxed, we got this guy's - I'm confident about this at this point.
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andy what spray you using ????
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Yes please clear this on standing up???
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Yes pois symptoms upon standing, but especially sitting in the car.
U guys should read everything i wrote and take it into consideration. This has been mentioned on the forum by stef and
observer before and POIS IS LIKELY A FORM OF POTS in my not so humble opinion- in my case.
No supplements now- D made things very bad because it can bind to calcium making u ver inflexible; id stay away from d and magnisum supplemens. Niacin only if u have sufficient salt in u diet.
Carefully read everything i said in my numerous posts before and consider. Try my experiments and don't judge without taking it all in.
POIS=POTS they are part of the same thing.
Happy trails and be good.
We will do this together. I am now more confident than ever.
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Like i said u cannot do that without sufficient salt in ur bloostream and can damage u liver making recovery irreversable for someone as deep in as myself.
I am coordinating with doc now and mine are confident the two are tied together.
I fill keep u updated.
Remember nicacin is a treatment not a cure and ur pois can and will come back if u stop it. But 250mg can damage ur liver over long periods of time. I am too fragile right now it is not an option.
Like i said carefully read everything i said before.
Bee good
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Andy, I agree with you,
POIS and POTS share something in common. One of my best friends, a girl, was diagnosed with POTS last year, and I was struck at how similarly we felt when we were having symptoms. Thing is, she is doing fine after treatment with beta blockers, and making sure her electrolyte balance is in order.
I don't get symptoms from pressure, standing or sitting. Only from ejaculation. Manupulating the lumbar spine (lower spine) may aggravate your POIS, further lending support to the nerve dystonia theory.
POTS is a kind of nerve dystonia. POIS may very well be the same.
Hope you feel better! I wonder, do you do much exercise or stretching/yoga? I would think that whatever you could do to improve nerve tone (exercise) and reduce inflammation around your problem areas (stretching, anti-inflammatories) could help!
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2 more snapshots:
Entrance to Dr Komisaruk's office building:
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/F8F0FCFE-656C-4785-A973-004EE44934FC.jpg)
Outside Dr. Komisaruk's office is a first-of-it's-kind chart!
"Men's Genital Structures Mapped On The Sensory Cortex: fMRI Evidence"
(Rutgers-POIS Team Members)
This was my DREAM -- to sit down with a medical-professional outsider who could explain POIS -- since February, 2007...when the forum only consisted of me, b_jim, and John21! :)
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ive been around since 2007 lol. not all that active at times, for sure.
anyways I am extremely positive about their approach, but perhaps only because of my individual physical maladies that exist when not POISed that leads me to believe I have a disturbed vagus nerve.
since i was a kid, ive always had spasms in my left neck area. they exist to this day. if i sit too long, eventually a left neck muscle will strain and i will be unable to look left for a period of 2-3 days. Lotsa of pain too. Ive learned to exercise in order to combat this very annoying issue, since exercise of the neck area seems to help prevent this.
in addition, as this pressure and tension in my neck builds, i tend to get nauseous the longer i sit.
i have had a cervical MRI but i dont think they looked at compression of the vagus nerve specifically? I may have my MRI resubmitted to a diagnostics lab to have the vagus nerve roots looked at. Besides nausea, the neck tension (which is always there on the left) causes migraines on a CONSTANT basis.
plus, i cannot @#$@#ing sleep for the life of me without sleep medication, and I am also unable to sleep on any one side for the entire duration of the night.
ive come home exhausted from work, totally exhausted, and after laying down, within minutes i cannot feel the exhaustion anymore and my muscles over my entire body will NOT relax, and i feel somewhat numbness throughout my entire body. without relaxing of the muscles, and the FEELING of that relaxing, NO SLEEP.
the neck issues have always been there. also when really tired or in extreme cases of alcohol or other things, my left pupil will dilate to a diff size than my right.
i normally feel a bit of numbness and tingling on the left side of my face, emanating from the middle of the neck to the front. like as in right now sitting here.
in addition, I have relatives who have had severe syndromes (one had severe and constant nausea for no reason) that resulted in part of their vagus nerve being removed from their body.
recently in my researching ive noticed some insight has been garnered from Atlas vertebra subluxation (misallignment) in how it relates to vagus nerve compression. Notice how many of the symptoms listed are similar to ones experienced POIS: http://atlassubluxation.wordpress.com/2011/06/30/symptoms-and-signs-of-atlas-subluxation/
I think when you look at the myriad symptoms, look for a single causality, the vagus nerve would certainly be at the top of that list.
Also an interesting read http://mindblog.dericbownds.net/2011/10/how-vagus-nerve-links-our-brains-to-our.html
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Fascinating detective work and reporting, Defsync!
Thanks for the encouragement about vagus nerve implications.
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Didn't realize you had these neck issues Defsync. I don't have something similar exactly, but I have had chronic soreness of the neck and lower back. At an early age, maybe 15, my neck grew enormously as did my back. They became very muscular, and many people remark that I have the neck of an (American) football player. But it is tight very often (This was after I started having POIS, that was 12-13 years of age). I have to constantly be stretching my neck to make sure I dont pull it painfully. This is also the case with my hamstrings and calves, they are actually the most sore muscle groups after I wake up in the morning post ejaculation
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Cool beans Demo! Glad your wking so hard on this ;)
So, I said I would fill you guys in bout what I said before; But, I don't wanna post too much on this feed anymore cuz it's kinda nonspecific and often happy compared to others. A
I do think POTS and POIS are connected and Nightingale made an interesting pt about the dystonia. I think it appears as such but may be more similar to a fibromyalgia which can cause similar symptoms (remove the sex from POIS).
Also, Shinjiro- I do think vitamen D, Magnesium and Niacin are all good for POIS, yet I have gone so far down the POIS rabbit-hole that taking too much of any of these releases too much toxins in my body at once and induces symptoms.
Recently, I have eliminated gluten from my diet (1month ago) and have had some bizarre changes in my POIS symptoms as a result. I think whats going is good yet, my body is purging itself and it is extremely painful and causes the worst symptoms I have ever had to come to surface all at once. Now, I decided to see what would happen if I reintroduced bread into my diet and instant POIS symptoms like I had sex. I think the crap is built up in my tissue from years and years of eating lots of pasta and bread and is inducing POTS/POIS/fibromyalgia type symptoms.
Recently I had sex and took two NSAID plus a healthy serving of penut butter before hand for niacin via diet and had minimal POIS symptoms. Mild neuropathy and hyper. This is extremely unusual for me being that I almost always had a severe reaction after sex.
In my case, I do think gluten is connected to all of the syndromes listed above and may cause them. Yet at this pt, my nerves are shot and adjusting and getting better will be a challenge. But, at least I know, most of my symptoms are severe GI and neuromuscular ones at this pt and can attack this thing from that angle.
The gluten makes me feel feverish and like I am passing out while inducing the worst of POIS- so who knows...
So Sex- Spotty POIS, goes up and down (Most reactions if they do occur are hours after sex sometimes 12 but can be sever with the delayed response)
Bathroom- 1 & 2 POIS is bad- especially 2 is painful.
Laying down- POIS bad and intestines/anus hurt primarily while radiating out. Hard to lay flat/side or belly without sever pain.
Cracking joints- They are doing it less and less but induces neuromuscular symptoms when it happens.
TV Comps- If I am not having an acute reaction these symptoms have turned way more mild
Physical Therapy- When they push on things a lot releases and it is very painful.
Ginger tea, NSAIDs, benidryl and peanut butter seem to help the most.
Thanks for the input guys. It means a lot.
I will now journal this stuff instead.
Thanks Again ;)
Andy
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Cool beans Demo! Glad your wking so hard on this ;)
So, I said I would fill you guys in bout what I said before; But, I don't wanna post too much on this feed anymore cuz it's kinda nonspecific and often happy compared to others. A
I do think POTS and POIS are connected and Nightingale made an interesting pt about the dystonia. I think it appears as such but may be more similar to a fibromyalgia which can cause similar symptoms (remove the sex from POIS).
Also, Shinjiro- I do think vitamen D, Magnesium and Niacin are all good for POIS, yet I have gone so far down the POIS rabbit-hole that taking too much of any of these releases too much toxins in my body at once and induces symptoms.
Recently, I have eliminated gluten from my diet (1month ago) and have had some bizarre changes in my POIS symptoms as a result. I think whats going is good yet, my body is purging itself and it is extremely painful and causes the worst symptoms I have ever had to come to surface all at once. Now, I decided to see what would happen if I reintroduced bread into my diet and instant POIS symptoms like I had sex. I think the crap is built up in my tissue from years and years of eating lots of pasta and bread and is inducing POTS/POIS/fibromyalgia type symptoms.
Recently I had sex and took two NSAID plus a healthy serving of penut butter before hand for niacin via diet and had minimal POIS symptoms. Mild neuropathy and hyper. This is extremely unusual for me being that I almost always had a severe reaction after sex.
In my case, I do think gluten is connected to all of the syndromes listed above and may cause them. Yet at this pt, my nerves are shot and adjusting and getting better will be a challenge. But, at least I know, most of my symptoms are severe GI and neuromuscular ones at this pt and can attack this thing from that angle.
The gluten makes me feel feverish and like I am passing out while inducing the worst of POIS- so who knows...
So Sex- Spotty POIS, goes up and down (Most reactions if they do occur are hours after sex sometimes 12 but can be sever with the delayed response)
Bathroom- 1 & 2 POIS is bad- especially 2 is painful.
Laying down- POIS bad and intestines/anus hurt primarily while radiating out. Hard to lay flat/side or belly without sever pain.
Cracking joints- They are doing it less and less but induces neuromuscular symptoms when it happens.
TV Comps- If I am not having an acute reaction these symptoms have turned way more mild
Physical Therapy- When they push on things a lot releases and it is very painful.
Ginger tea, NSAIDs, benidryl and peanut butter seem to help the most.
Thanks for the input guys. It means a lot.
I will now journal this stuff instead.
Thanks Again ;)
Andy
My grandmother had fibromyalgia.
You are on the right track, keep it up
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If anybody can unravel POIS ...my money's on Rutgers!
Demo
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Cool beans Demo! Glad your wking so hard on this ;)
Thanks, Andy!
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If anybody can unravel POIS ...my money's on Rutgers!
Demo
I feel very optimistic about the Rutgers research :)
Prancer, I sent our 2 comments above to Dr K. Thanks!
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Awesome!!
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Outside Dr. Komisaruk's office is a first-of-it's-kind chart!
"Men's Genital Structures Mapped On The Sensory Cortex: fMRI Evidence"
(Rutgers-POIS Team Members)
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/1EC47FCD-5E55-44EC-8599-023882507D88.jpg)
Dr Komisaruk's abstract for "Men's genital structures mapped on the sensory cortex: fMRI evidence" can be found at:
http://tinyurl.com/lkabzj7
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Wow, this looks very useful information. Looks like it would be very useful to know this before they start scanning us POISers! Thanks for the update Demo!
FloppyB
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Pages 6-9 of this report gives little more background on Dr. Komisaruk and the Rutgers teams overview on the male brain and fMRI reactions and observations of what happens during the good deed. I think !
http://avanceyperspectiva.cinvestav.mx/wp-content/uploads/2013/09/How-our-brain-responds-to-genital-stimulation.pdf
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Good findings, guys! :)
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Pages 6-9 of this report gives little more background on Dr. Komisaruk and the Rutgers teams overview on the male brain and fMRI reactions and observations of what happens during the good deed. I think !
http://avanceyperspectiva.cinvestav.mx/wp-content/uploads/2013/09/How-our-brain-responds-to-genital-stimulation.pdf
Super interesting info, thanks!
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People I wish to find people to share my joy for finding the solution to POIS.
I contacted yesterday someone from Greece and we will meet next week.
I was a POIS sufferer for more the 14years and now things are Great, no more this self autoimmune attack, flu like syptoms, I remember how much easy was to get gold during winter.
I wish to call and share the news with women who met me in the past. Maybe they wouldnt care.
I can confirm that not only no POIS symptoms but also it became easier to ejaculate. It is possible now to ejaculate, 3 times at the same hour.
Of course I will be tired, but not in the POIS way.
Big relief
3 things I ve done this last month that my pois left
1) The main reason I thing - finding the correct Homeopathic Treatment ("Classical Homeopathy" - it is not "herbs" or "vitamins", the Doctor finds you Homeopathic Temperament) - I was doing Homeopathy 10 years, changed several doctors but the persistance this August had results...
2) I took away amalgam filling
3) Started Ayurvedic Medicine. (one pill in the morning - and a powder spoon in the night)
Those are the 3 things that I did in July. I continuou to eat gluten free, a multivitamim per day, and various vitamins from time to time, but this is not the solution.
Of course in the past I took megadoses of vitamines before and after ejaculation, cold shower is still a nice tonic
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Outside Dr. Komisaruk's office is a first-of-it's-kind chart!
"Men's Genital Structures Mapped On The Sensory Cortex: fMRI Evidence"
(Rutgers-POIS Team Members)
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/1EC47FCD-5E55-44EC-8599-023882507D88.jpg)
Dr Komisaruk's abstract for "Men's genital structures mapped on the sensory cortex: fMRI evidence" can be found at:
http://tinyurl.com/lkabzj7
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Entrance to Dr Komisaruk's office building:
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/F8F0FCFE-656C-4785-A973-004EE44934FC.jpg)
This was my DREAM -- to sit down with a medical-professional outsider who could explain POIS -- since February, 2007...when the forum only consisted of me, b_jim, and John21! :)
ive been around since 2007 lol. not all that active at times, for sure.
Defsync, sorry I left you off the 2007 list ! :)
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Hmm... This forum is so dead. If I could write Russian language. I would go and register on Russia forum of POIS and tell them I am cured from my horrible POIS symptoms. 100% POIS free, Lol
Glad your POIS is gone Shinjiro. I have one question for you if you don't mind.
I started masturbate when I was 10(I`m 15 now).
I am 17 years old ( Asian ). I am thin and unable to gain weight, no matter how much I ate.
Can you please tell us what time machine you used to age 2 years in the span of just 7 months? Thanks
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Can you please tell us what time machine you used to age 2 years in the span of just 7 months? Thanks
(http://www.picgifs.com/graphics/l/laughing/graphics-laughing-320375.gif)
"Advanced Quantum
Physics!!!??!"
-
(http://1.bp.blogspot.com/_CdocFnegjE0/TPALBDUbfvI/AAAAAAAAB5A/bm3VFgoQC2A/s1600/timemachine60_george_in_machine5.jpg)
"We need one for the
WHOLE forum !!!"
:)
Daveman, do we have a Time Machine budget????
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(http://cdn6.rccaraction.com/wp-content/uploads/2014/05/BTTF2.jpg?d2971c)
We should get TM budget!! Lol. My cognitive symptoms get very bad at times, but they're never so bad where I can't remember my name or age!
PS - Shinjiro, the forum is not dead. The only thing that's dead is your credibility!
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I really thank you Prancer for your comment.
@Shinjiro: it's really harmful and annoying to spread misleading information through this forum . I really don't know what is your intention so please watch your words.
@forum administrators: I appreciate your evaluation for this incident
Regards,
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(http://cdn6.rccaraction.com/wp-content/uploads/2014/05/BTTF2.jpg?d2971c)
I hope it gets good mileage and maintenance won't cost an arm and a leg !
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I hope it gets good mileage and maintenance won't cost an arm and a leg !
88 mpg
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The Third of September approacheth...
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I hope it gets good mileage and maintenance won't cost an arm and a leg !
88 mpg
The Third of September approacheth...
Yes it does.
Fingers crossed!
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This thread has been read: over 100,000 times.
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@forum administrators: I appreciate your evaluation for this incident
He's just been warned by Daveman in clear language on another thread :)
why what i am doing wrong here ?????
Nothing at all Sameer, it's Shinjiro that's misguided.
Shinjiro let's have respect for other members here. Most of your posts are utter nonsense and without any consistency. Your POIS is cured one day and you complain about your POIS the next. You even age 2 years in less than half a year.
So Shinjiro, something's not so clear about your intention here or the reality of your character. Straighten up or leave... go learn Russian.
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I hope it gets good mileage and maintenance won't cost an arm and a leg !
88 mpg
Wow. I'm recommending to Stef to include TM in our next RFP ! :)
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Day of reckoning! Anybody have any sense of when we'll hear back from the IRB?
-
That's why I logged on. what did they say?....
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We all are waiting for the good news !
Hope to hear soon !
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PLEASE READ THIS OLD CORRESPONDENCE CAREFULLY! Demo
On Aug 2, 2014, at 8:52 AM, "Barry R. Komisaruk" <brk@psychology.rutgers.edu> wrote:
Dear All,
The Rutgers IRB panel meets on September 3, so I should have word shortly
thereafter if the protocol is approved. I will keep you posted as soon as
I hear.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102
phone (office): 973 353 3941
phone (mobile): 973 462 0178
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thankyou demo
-
You're welcome , Sameer :)
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Nice! Keep us updated on what happens, thanks Demografx!
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Thanks, Prancer and everyone , for your sustained patience.
We know it's not easy...waiting!
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Thanks demo
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Sure, G- man, we're all here to support each other :)
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Hey everyone! Shout out your POIS frustrations here or elsewhere @ poiscenter. com!
Demo
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GOOD NEWS,
EVERYONE!!!!
On Sep 13, 2014, at 6:31 AM, Barry Komisaruk <brk@psychology.rutgers.edu> wrote:
Dear Demo,
I phoned the IRB and they said my application is approved. I should receive the formal documentation Monday.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
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Dear Demo, Daveman, Stef & Other fund contributors,
What great news here ! That is one amazing piece of news from Dr. K and Rutgers.
Worth the wait. Would be good to hear from others here
Actually fantastic ;-)
-
yippy...
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:) :) :)
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This is the best news!!!!
Congratulations, everyone!
Stef
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This is the best news!!!!
Congratulations, everyone!
Stef
Dear Stef,
Without your patient and loving guidance -- for years!! -- we would have never gotten this far!
All the best,
Demo
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(http://www.tumblr18.com/t18/2013/10/Congratulations-with-clappings.gif)
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Hi All,
It's been a true honor to help you launch your first research grant.
Never forget that YOU all made this happen! Whether it was through donating or through encouraging each other -- you men did it!!
Because of your efforts, POIS is on the way to being unraveled -- and conquered.
Stef
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Beautiful words, Stef!!
Thank you :)
Demo
-
GOOD NEWS,
EVERYONE!!!!
See above!
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I sent this page to Dr Komisaruk
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(http://img2.findthebest.com/sites/default/files/2240/media/images/Rutgers_the_State_University_of_New_Jersey--Newark_414333_i0.png)
Rutgers University-Newark -- national
rankings:
http://www.newark.rutgers.edu/rankings
-
:-)
-
(http://ecx.images-amazon.com/images/I/41FioiNf1GL.jpg)
(http://i.ebayimg.com/00/s/NDAyWDI2MA==/z/9Y0AAOxynapRgU6u/$T2eC16VHJGIFFoYb!IbqBRgU6uMq3w~~60_35.JPG)
Check your local public library or
favorite
bookseller.
-
:-)
Nightingale, if you're smiling about the ranking -- I am too.
It's almost irrelevant to us.
As far as Orgasm Researchers I could certainly see Rutgers ranked in The Top 5 -- if not #1 :)
-
:-)
Nightingale, if you're smiling about the ranking -- I am too.
It's almost irrelevant to us.
As far as Orgasm Researchers I could certainly see Rutgers ranked in The Top 5 -- if not #1 :)
Agreed!
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OFFICIAL IRB APPROVAL!!!
On Sep 15, 2014, at 10:38 AM, Barry Komisaruk <brk@psychology.rutgers.edu> wrote:
Dear Demo,
Attached please find the official IRB approval for the POIS research.
It is now ok to post the information.
Barry
--
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941(work)
fax: 973-353-1171
<POIS IRB approved 091514.pdf>
[shown below]
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I could not upload a PDF and I got an error message. Would be best to put it on a site and post the link to this forum if possible.
FB
-
Try this? http://www.scribd.com/upload-document
I hear good things about this site
-
(http://i858.photobucket.com/albums/ab143/demografx/B5B4F04E-5957-4874-B17D-0C879860FAB4.jpg)
-
(http://i858.photobucket.com/albums/ab143/demografx/9CC56921-C0FF-4A70-BF28-0072850EA09A.jpg)
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Can we get some information on formally applying to be a candidate? Also, assuming invitation to participate, what hours/days of the week are available (I work in NYC and can train over, but I work 8-6pm at the very minimum during M-F. Otherwise I'd be happy to participate... I'm a Rutgers alumn!)
-
(http://i858.photobucket.com/albums/ab143/demografx/0D97E424-BB36-48A2-A52E-C14F1D1A1AA4.jpg)
-
(http://i858.photobucket.com/albums/ab143/demografx/4FC82148-63D0-4AEF-81F0-52E13AA7D6D9.jpg)
-
Can we get some information on formally applying to be a candidate? Also, assuming invitation to participate, what hours/days of the week are available (I work in NYC and can train over, but I work 8-6pm during M-F. Otherwise I'd be happy to participate... I'm a Rutgers alumn!)
If anything is not answered above , you can email Dr Komisaruk.
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Inexpensive housing near Dr Komisaruk
& RUBIC:
From lost thread:
https://m.airbnb.com/s/Newark--NJ
The Hilton Hotel is very close to
Dr Komisaruk -- but expensive :(
(http://3.bp.blogspot.com/-X19egjCRxZU/T3a2BbTBnCI/AAAAAAAAAVU/iHwTPDqz_VQ/s1600/Airbnb-Booking-Screen.jpg)
-
This is just ONE (1) example -- it is NOT necessarily a POISCenter recommendation -- of numerous programs that might help you consider traveling to and participating in the Newark POIS Studies:
(http://i858.photobucket.com/albums/ab143/demografx/9887B0C4-6D8F-43DA-8339-4195C4CA369A.png)
http://www.patienttravel.org/
-
I will add [cost-effective patient travel to
Newark]
1. MEGABUS
and
2. SPIRIT AIRLINES
has sweet deals especially when planning
ahead.
-
[last page in Dr Komisaruk's letter, previous page]
(http://i858.photobucket.com/albums/ab143/demografx/DDCAE613-67DE-4356-A5F8-4458AC7C39DA.jpg)
-
I could not upload a PDF and I got an error message. Would be best to put it on a site and post the link to this forum if possible.
FB
Try this? http://www.scribd.com/upload-document
I hear good things about this site
Thanks , guys !
But I finally got my old standby to work: photobucket. com
It converts PDF 's to links/URL's pretty easily.
-
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/899DA16D-5365-4E91-981E-102E1A2A8237.jpg)
-
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/642D6C8A-7CE5-4257-B606-81AA6976AB26_1.jpg)
-
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/D5D4BBE8-FEFA-4E3D-8FC7-E9830017E39D.jpg)
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Thanks for the pics demografx! It feels amazing finally being so close to some bona fide POIS analysis. It's a deeply welcomed switch from all the charlatans and their delusional, non-scientific & quack schemes we've seen so much of in the past.
-
Thanks for the pics demografx! It feels amazing finally being so close to some bona fide POIS analysis. It's a deeply welcomed switch from all the charlatans and their delusional, non-scientific & quack schemes we've seen so much of in the past.
Prancer, the upside is that we always had good music accompanying the posts. The quack posters even gave away free headphones!
(http://www.dws.org/sousa/cache/com_zoo/images/charlatan_dc8bf82b1666317364d8fd90864ee62f.jpg)
-
Thanks for the pics demografx! It feels amazing finally being so close to some bona fide POIS analysis. It's a deeply welcomed switch from all the charlatans and their delusional, non-scientific & quack schemes we've seen so much of in the past.
Prancer, the upside is that we always had good music accompanying the posts. The quack posters even gave away free headphones!
(http://www.dws.org/sousa/cache/com_zoo/images/charlatan_dc8bf82b1666317364d8fd90864ee62f.jpg)
:]
-
(http://lolbot.net/pix/1268.jpg)
Billy, Which was our 1st POIS Adviser!!!
(Ya gotta start _somewhere_ !!!!)
-
I can feel the pin pricks starting already... (http://pad2.whstatic.com/images/thumb/4/48/Use-a-Voodoo-Doll-Step-1.jpg/670px-Use-a-Voodoo-Doll-Step-1.jpg)
-
"Ouch!"
-
Can we get some information on formally applying to be a candidate? Also, assuming invitation to participate, what hours/days of the week are available (I work in NYC and can train over, but I work 8-6pm during M-F. Otherwise I'd be happy to participate... I'm a Rutgers alumn!)
If anything is not answered above , you can email Dr Komisaruk.
daropac, please see Stef 's new thread:
http://poiscenter.com/forums/index.php?topic=1478.msg13756#msg13756
-
Can we get some information on formally applying to be a candidate? Also, assuming invitation to participate, what hours/days of the week are available (I work in NYC and can train over, but I work 8-6pm during M-F. Otherwise I'd be happy to participate... I'm a Rutgers alumn!)
If anything is not answered above , you can email Dr Komisaruk.
daropac, please see Stef 's new thread:
http://poiscenter.com/forums/index.php?topic=1478.msg13756#msg13756
I will do it, I live in Jersey and am close by....
Can POIS be a herniation of reproductive organ tissue? Why would direct ice on the perineum help me otherwise? Reduces every bizarre symptom....
-
I will do it, I live in Jersey and am
close.
GREAT NEWS,
ANDY!
-
Can POIS be a herniation of reproductive organ tissue? Why would direct ice on the perineum help me otherwise? Reduces every bizarre symptom....
I think that's a good ***informational*** comment for both Dr K and Dr Lakshmin, M.D. --
To: brk@psychology.rutgers.edu
cc: plakshmin@gmail.com
-
Thanks for the pics demografx! It feels amazing finally being so close to some bona fide POIS analysis. It's a deeply welcomed switch from all the charlatans and their delusional, non-scientific & quack schemes we've seen so much of in the past.
We've been seeing at the forum "all the charlatans and their delusional, non-scientific & quack schemes," ever since Day 1 of the forums in February, 2007! They never stop, they just go away (temporarily) and then are replaced by the next charlatan :)
8 years of wading through nonsense.
But we're still lucky; many other rare disorder groups are still struggling with the Paleolithic Era of Research. Like we did.
-
andy451,i thank you for participating in the research
-
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/2014-01/D173F39D-20C2-413B-9547-4E6094434F9C.jpg)
I'm still excited at the possibility of that ear stimulator working on POIS!
As per Dr. Komisaruk's recent email to me: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."
-
I could not upload a PDF and I got an error message. Would be best to put it on a site and post the link to this forum if possible.
FB
Try this? http://www.scribd.com/upload-document
I hear good things about this site
Thanks , guys !
But I finally got my old standby to work: photobucket. com
It converts PDF 's to links/URL's pretty easily.
Colm also deserves praise for trying to help via PM. Thanks, Colm !
-
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/2014-01/D173F39D-20C2-413B-9547-4E6094434F9C.jpg)
I'm still excited at the possibility of that ear stimulator working on POIS!
As per Dr. Komisaruk's recent email to me: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."
Is the hypothesis that this would be worn during orgasm? For a limited time after? For an extended period after? Completely understand this is all speculation at this point, just curious if this has been discussed at all
-
(http://i858.photobucket.com/albums/ab143/demografx/Mobile%20Uploads/2014-01/D173F39D-20C2-413B-9547-4E6094434F9C.jpg)
I'm still excited at the possibility of that ear stimulator working on POIS!
As per Dr. Komisaruk's recent email to me: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."
Is the hypothesis that this would be worn during orgasm? For a limited time after? For an extended period after? Completely understand this is all speculation at this point, just curious if this has been discussed at all
All depends on how participant trials go ! :)
-
edit to above: Dr K or Dr Lakshmin would be the ones to ask. They probably have some idea how they will ask us to "trial the device" -- but when I saw Dr K my impression was that he wanted to try different things.
Their email addresses can be found above on this page.
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
-
Hi Demo,
Is the Nemos devise the one that will be used in the study or is that just one example of a tVNS device?
Thanks FloppyB
-
I haven't seen the device. But I'm sure the concept of the hardware is the same. The trials will be adjusted strictly to the participant's POIS reactions throughout the procedure.
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Bookmark your POISCenter RSS for
your iPhone:
http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom
OR
http://tinyurl.com/kxtbx6a
-
Welcome to POISCenter!
(http://schools.springisd.org/images/102-Welcome%20Animation.gif)
Here are some POIS resources which may be helpful to you:
We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:
Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis
More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042
Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos) Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".
Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/) Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!
Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 6th button to your right! (http://www.POISCenter.com/forums/index.php)
Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/
The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.
Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g
Post Orgasmic Illness Syndrome "POIS": Case report
Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt
For more info, check out emi_b's SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen
POIS Research Studies available Upon Request:
1. and 2. POIS Research Studies, 2011
These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.
3. First POIS Research Study, 2002
We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD, Ph.D., and Dr. Dave Schweitzer, MD.
4. Recent POIS Research Study, 2010
CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781
5. British Medical Journal Case Report, 2010
Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
How to get any or all of the above 5 studies: send the Administrators "demografx" or "daveman" a Private Message (PM) with your regular email address (e.g., jim@abc.com) and we'll send you back the PDF(s).
To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.
New York Times article,
January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
It can be very helpful to you when dealing with medical professionals to point this out. Click to see
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)
And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)
The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php. The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.
POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome
For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.
Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!
SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
-
https://www.rarediseases.org/about/medical-advisory-committee
MAC -- a powerful reminder of why "vagus nerve" is our next step in POIS investigation :)
These are the people who voted Komisaruk over anyone (incl groups) over Dr K.
demografx
ps - we all PAID $2,500+ for this recommendation :)
-
https://www.rarediseases.org/about/medical-advisory-committee
MAC -- a powerful reminder of why "vagus nerve" is our next step in POIS investigation :)
These are the [people] who voted Komisaruk over anyone (incl groups) over Dr K.
demografx
ps - we all PAID $2,500+ for this recommendation :)
Just to make sure it's clear to everyone, the Medical Advisory Committee (MAC) receives no payment for their HOURS of review and discussion about each application. Their
participation is purely voluntary -- 5 men, 3 women -- each a scientist and an experienced researcher.
NORD charges a $3,500 administration fee for each grant that gets awarded. That translates to 0.90 cents of each $1.00 going directly to your research.
Stef
-
Thanks for clarifying, Stef !
MAC selection is sooooooo important to the objective next steps needed for a rare disorder to take !
-
I don't know if anyone's seen the Verizon Math Fail video, but I just read .90 cents as .90 dollars and freaked out a bit. 🙀
-
Vagus Nerve presentation on YouTube:
https://m.youtube.com/watch?v=5d6e_Un6dv8
Presented by Dacher Keltner
http://psychology.berkeley.edu/people/dacher-keltner
-
https://www.rarediseases.org/about/medical-advisory-committee
MAC -- a powerful reminder of why "vagus nerve" is our next step in POIS investigation :)
These are the [people] who voted Komisaruk over anyone (incl groups) over Dr K.
demografx
ps - we all PAID $2,500+ for this recommendation :)
Just to make sure it's clear to everyone, the Medical Advisory Committee (MAC) receives no payment for their HOURS of review and discussion about each application. Their
participation is purely voluntary -- 5 men, 3 women -- each a scientist and an experienced researcher.
NORD charges a $3,500 administration fee for each grant that gets awarded. That translates to 0.90 cents of each $1.00 going directly to your research.
Stef
Stef, you know I spent time in the fundraising field.
90% funding going to research (vs. Admin, overhead, salaries, etc)...is unheard of!
We got a Real Home Run for our money. :) I'm so glad we met!!
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
Very interesting! Thank you for that.
Upon thinking about this new research and vagus-nerve dystonia, I realized that I have always had issues with my ears and wonder what the connection may be... As a child, at age four I spiked 3 fevers above 104 degrees from ear infections! Also, I was diagnosed with auditory processing issues in school as a child. I have also had hypersensitive ears my whole life and wonder if there is connection to the research being done..
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
I just performed a VO2 max test at Virginia Tech last month. They confirmed what I've known for a while: I've got a much lower max heart rate than normal, they found 170 bpm when expected would be 190 bpm at my age. This naturally leads to a lower oxygen usage (VO2). I am currently seeking a neurologist who can work with me on this. Maybe they would be part of my treatment team in the future if vagal nerve stim is found to be helpful for POIS and/or there is enough reason to start using a vagal nerve stimulator?
Great post!
-
Great post!
I agree !
All tVNS posts above are enlightening!
-
I think it is unlikely that our POIS study will use Nemos [from Cerbomed], most likely they will just be using a modified TENS unit that fits and stays on the tragus.
From my notes when I visited Rutgers my understanding is that they will test a "Cerbomed tVNS device" on POISers. Not TENS.
-
I think it is unlikely that our POIS study will use Nemos [from Cerbomed], most likely they will just be using a modified TENS unit that fits and stays on the tragus.
From my notes when I visited Rutgers my understanding is that they will test a "Cerbomed tVNS device" on POISers. Not TENS.
That's great, the Nemos probably fits into the ear very nicely and would be a lot easier than designing your own tens electrodes that are comfortable and ergonomic.
-
Very interesting! Thank you for that.
Upon thinking about this new research and vagus-nerve dystonia, I realized that I have always had issues with my ears and wonder what the connection may be... As a child, at age four I spiked 3 fevers above 104 degrees from ear infections! Also, I was diagnosed with auditory processing issues in school as a child. I have also had hypersensitive ears my whole life and wonder if there is connection to the research being done..
I remember right around the time I was developing POIS (14), my ears would feel & look red and hot at times for no apparent reason. No idea if there's any connection...but I wanted to say it.
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
There is a reason that Dr, Komisaruk has been approved by the IRB. and that it took so long. These approvals aren't taken lightly, and they have, more than anything, our safety in mind.
Approved TENS devices are approved for specific applications. I imagine it could be very dangerous to use a device that is used for pain mitigation in joints and muscles for a delicate procedure like vagus nerve stimulation. Most TENS devices have "programs" and protocols, and specific electrode configurations. Some applications are "simple", others are very complex.
What make the TENS unit useful for any application, is the combination of factors that make it up. Most of these are controlled by firmware (internal software), but ultimatley come from medical expertise, research and knowledge.
I really don't care which unit Dr. Komisarul will use. If he uses the cheapest he can find, I don't have a problem, it's his knowledge in the choice and application, that I trust.
He has been doing this work and using devices like this for longer than any of us here. He is doing it in combination with careful study of the supposed patient (subject) and careful follow-through, which even includes an fMRI. Most cheap units don't come with an fMRI.
It's Dr. Komisuruk's protocol and follow-through that interest me.
-
I remember right around the time I was developing POIS (14), my ears would feel & look red and hot at times for no apparent reason. No idea if there's any connection...but I wanted to say it.
As a child I had frequently recurring painful earaches...FWIW.
-
I remember right around the time I was developing POIS (14), my ears would feel & look red and hot at times for no apparent reason. No idea if there's any connection...but I wanted to say it.
I had exactly the same
-
My ears ring a lot during POIS. FWIW. Unwanted vagal nerve stimulation?
-
Interesting, Daveman!
-
I've had times during POIS when my ears would suddenly start to ring. I'm really liking this investigation into the vagus nerve possibly being involved. [not to be confused with the Vegas nerve, which is the nerve responsible for the urge to gamble. j/k]
-
Very nice post! Couldn?t have agreed any more
-
In The Netherlands 1 man who has POIS is cured by THC drops. After two weeks of taking a few drops he has zero POIS! I tried it too. But for me it had only minor effects. I sleep better and I am less stressed.
Maybe it will work for you. But only take cannabis oil in states where it is legal!! In the US only in Colorada it's legal. In Europe only The Netherlands. UK and Belgium are talking about legalizing THC oil.
Take 3 or 4 drops in the morning and 4 or 5 before going to bed. You will not get high by this.
-
I think a lot POIS patients have problems with the ears. That's because of inflamation of the ears, throath and nose.
-
I have inflamed tear duct because of POIS. I thought that I had sinusitis. But it always starts with inflamed tear duct. Then the nose, troath and forehead gets inflamed. And after a few days I get a pimple under my eye. That's the pus, not acne.
I read that they put a tube in the tear duct and that helps. Who has inflamed tear duct too?
-
I'm really liking this investigation into the vagus nerve possibly being involved. [not to be confused with the Vegas nerve, which is the nerve responsible for the urge to gamble. j/k]
Prancer, yes!
If the POIS/Vagal Dystonia study achieves great success, Rutgers and/or NORD should treat us all to a night week in which we are all...
(http://media.giphy.com/media/sbHwkkDu3SwZW/giphy.gif)
-
Re-posted
[When] we do find a cure I think
we won't have any excuses
not to become
very rich and meet on a secret island
every five years. ;D
(http://farm4.hv-static.flickr.com/3201/2909686963_a2a3671f33.jpg)
POISers' Secret Island Retreat
-
I don't know if anyone's seen the Verizon Math Fail video, but I just read .90 cents as .90 dollars and freaked out a bit. ????
Myers6609,
I finally took a look at that Math Fail video -- it's hilarious!!!!
Belated thank you for mentioning it. :-)
http://youtu.be/zN9LZ3ojnxY
Stef
-
I don't know if anyone's seen the Verizon Math Fail video, but I just read .90 cents as .90 dollars and freaked out a bit. ????
Myers6609,
I finally took a look at that Math Fail video -- it's hilarious!!!!
Belated thank you for mentioning it. :-)
http://youtu.be/zN9LZ3ojnxY
Stef
Reminds me of all my tech/customer service calls!!
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
Hi Dr L,
I am curious know how come you got a price in USD? That works out at about 2.5K GBP, ouch!
It seems your first link doesn't work for me so I repost this one:
http://www.leeds.ac.uk/news/article/3572/tickling_your_ear_could_be_good_for_your_heart
Thanks FloppyB
-
Hi Lauracostis,
Are you able to obtain the full report for the study:
Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity
I can only view the abstract and if you want to get the full report you have to try one of these options:
Purchase access to this article
You must be logged in to purchase this article.
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Thanks! FloppyB
-
This one's cheap and it's got an earplug electrode:
http://www.amazon.co.uk/Acupuncture-Medicomat-10-Electroacupuncture-Alternative-Hypertension/dp/B00EBCCU24/ref=sr_1_sc_1?s=drugstore&ie=UTF8&qid=1412854638&sr=1-1-spell&keywords=earplug+electrode
However the electrode looks the same as this one below. It looks like it's one electrode input point only and not bi-polar (positive and negative). So I don;t get how that could work unless you put one in each and the current goes between(?!)
http://www.alibaba.com/product-detail/Medical-tens-accessories-ear-acupoint-electrode_2023184165.html
I think we need pos and neg electrodes. I found this one which can be used for "electro sex" (so when you done with it you can clamp it on your partners nipples. That sounds like great value to me!:-)
http://www.ebay.co.uk/itm/Bi-Polar-clip-electrode-for-fetish-CBT-electro-play-TENS-ErosTek-E-Stim-/331341465888?pt=UK_HealthBeauty_Other_RL&var=&hash=item4d257d8920
Goodness me, you wouldn't believe (or perhaps you would) what else I cam across looking for "ear electrodes". BDSM electro stuff!
FloppyB
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
Hi Dr L,
I am curious know how come you got a price in USD? That works out at about 2.5K GBP, ouch!
It seems your first link doesn't work for me so I repost this one:
http://www.leeds.ac.uk/news/article/3572/tickling_your_ear_could_be_good_for_your_heart
Thanks FloppyB
Hi Floppy B, sorry the price is in Euros not the US dollar. 4000 Euros is what I heard it costs, I cant confirm this because the price is not listed on companies website.
-
Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
There is a reason that Dr, Komisaruk has been approved by the IRB. and that it took so long. These approvals aren't taken lightly, and they have, more than anything, our safety in mind.
Approved TENS devices are approved for specific applications. I imagine it could be very dangerous to use a device that is used for pain mitigation in joints and muscles for a delicate procedure like vagus nerve stimulation. Most TENS devices have "programs" and protocols, and specific electrode configurations. Some applications are "simple", others are very complex.
What make the TENS unit useful for any application, is the combination of factors that make it up. Most of these are controlled by firmware (internal software), but ultimatley come from medical expertise, research and knowledge.
I really don't care which unit Dr. Komisarul will use. If he uses the cheapest he can find, I don't have a problem, it's his knowledge in the choice and application, that I trust.
He has been doing this work and using devices like this for longer than any of us here. He is doing it in combination with careful study of the supposed patient (subject) and careful follow-through, which even includes an fMRI. Most cheap units don't come with an fMRI.
It's Dr. Komisuruk's protocol and follow-through that interest me.
Sorry Daveman, my post was not an attack on Dr. Komisuruk's protocol for the study. The Nemos is what I would use if I was doing the study and could get them. I just posted this because the Nemos is only available in 3 countries, and if using the Nemos in Dr. Komisuruk's study turns out to be beneficial to POIS, you won't be able to get one. If in the future, Nemos is approved for use in the U.S., you will have to pay cash for it unless you have refractory seizures. Daveman, you are correct that it is not a good idea to use the back or shoulder massage setting on a TENS device to stick on your ear. You have to research the device to make sure it has a manual settings besides automatic programs. Furthermore, the standard 2X2 inch electrode pads used for TENS units won't be very useful. I was simply trying to find an alternative to Nemos if this study proves vagal stimulation successful in the study.
-
Totally unrelated-
I was thinking of my situation w/ my girlfriend right now, and this is what it is like for a POIS afflicted man to try to successfully mate sometimes: :) Must watch this nature video...
https://www.youtube.com/watch?v=KYp_Xi4AtAQ
It seems to be true. We would sacrifice our health for women; where does it end? :) Love this video.
-
For those of you who have long-suspected thoughts of oxytocin and it's role in POIS:
http://www.capitalotc.com/oxytocin-the-love-hormone-controls-sexual-behavior-through-brain-cells/24004/
-
I thought the below link interesting. It says: "In Hippocrates? time, around 450 BC, bleeding points on the posterior (mastoid) surface of the ear were used to facilitate ejaculation, reduce impotency problem, and treat leg pain"
http://www.hindawi.com/journals/ecam/2012/786839/
FloppyB
-
I thought the below link interesting. It says: "In Hippocrates? time, around 450 BC, bleeding points on the posterior (mastoid) surface of the ear were used to facilitate ejaculation, reduce impotency problem, and treat leg pain"
http://www.hindawi.com/journals/ecam/2012/786839/
FloppyB
This is a really interesting article. All this about the ear is blowing my mind! So bizarre, yet well researched!
-
Nightingale, my sentiments exactly!
:)
-
Guys,
I know this is only a speculative comment but my curiosity and my patients is running a but wild. On the Cerbomed website I found the below study. Thus Prof. Komisaruk knows the Nemos devise very well. The interesting point for me was that the sham subjects had the ear lobe stimulated and it turned out it had reverse effect: "That is, concha stimulation strongly deactivated hippocampal activity, whereas earlobe stimulation activated it."
http://www.cerbomed.com/upload/Poster_fMRI_evidence_Komisaruk.pdf
I bought a tragus electrode and advised my Doctor. Its the same one as below article"tickling_your_ear_could_be_good_for_your_heart" . From what I can see from pictures the auricular branch of the vagus nerve splits into two when it gets to the ear (tragus and concha) http://www.leeds.ac.uk/news/article/3572/tickling_your_ear_could_be_good_for_your_heart
It didn't relieve my POIS though on the first time I tried it. Actually feel quite disappointed about that. Will continue to do some testing in the future (under safe parameters!)
FloppyB
-
I'm sure you agree that no one has promised that any tVNS - Cerbomed or otherwise - will work on POIS.
-
Agreed!
-
Guys,
I know this is only a speculative comment but my curiosity and my patients is running a but wild. On the Cerbomed website I found the below study. Thus Prof. Komisaruk knows the Nemos devise very well. The interesting point for me was that the sham subjects had the ear lobe stimulated and it turned out it had reverse effect: "That is, concha stimulation strongly deactivated hippocampal activity, whereas earlobe stimulation activated it."
http://www.cerbomed.com/upload/Poster_fMRI_evidence_Komisaruk.pdf
I bought a tragus electrode and advised my Doctor. Its the same one as below article"tickling_your_ear_could_be_good_for_your_heart" . From what I can see from pictures the auricular branch of the vagus nerve splits into two when it gets to the ear (tragus and concha) http://www.leeds.ac.uk/news/article/3572/tickling_your_ear_could_be_good_for_your_heart
It didn't relieve my POIS though on the first time I tried it. Actually feel quite disappointed about that. Will continue to do some testing in the future (under safe parameters!)
FloppyB
Hi Floppy,
I have played around a little bit, although of course, nothing any where near scientific! Since I don't have time to go looking for a TENS unit, and actually, probably wouldn't feel comfortable using one without medical scrutiny, I've used manual methods.
I've always had success controlling arrythmias with vagus stimulation around the carotid artery.
In the first instance, I attempted scratching the "concha" with a small piece of stick, like an extended fingernail shape. Both individual ear and stereo. The stimulation period was short, (1 min), so maybe not enough to really do much. I didn't notice any immediate effect, but it did seem to kick in after about 5 minutes. Doesn't seem to last too long however.
The effect, not being immediate, I dropped it, forgot about it, But after those 5 min or so, I realized that the POIS symptoms wee almost gone. As I said, didn't really last too long. Further testing had similar results, and to produce anything worthwhile, required a LOT of stimulation. Realize of course nothing like optimum conditions.
But I tried something that seemed to work a fair bit better. If I look at pictures of the vagus nerve, they don't seem to go exactly where I stimulated, but there is definately an effect. Similar to that which I get with vagus stimulation for arrythmias.
First when I stimulate for arrythmias, I message arround the carotid/jugular and inner clavicle. This is almost instantaneous and levels out heart rythms immediately.
So my stimulation for POIS is in the center of the chest a circle of about 15 to 20 cm. I just scratch the area starting from the inner clavicle and down to the base of the hollow in the chest. There's sort of a warm calming feeling the radiates out and through the upper torso. I further massage along and below each clavicle.
I swear it gives me at least a temporary relief from several of the symptoms. It takes away the sickly feeling, stabilizes the heart and lends an overall feeling of calming feeling. The calming feeling seems to reduce tension and stress over the whole POIS situation. The effect is about 15 minutes from a short 1 minute stimulation.
In both instances further stimulation extends the relief, but perhaps to a lesser degree. To have constant relief, I don't know. one might feel more bother from stimulation than from POIS.... I haven't taken it to that level, and perhaps there are techniques that optimze the stimulation etc. etc.
Nothing very scientific, and really perhaps not enough "testing" to be anywhere near conclusive.
BTW, I think that if it can be shown that this stimulation has effect in the brain, and produces "some" albeit temporary relief, that this could be a major breakthrough in highlighting, directing further studies. It would be something medically concrete.
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Thanks for sharing that Daveman.
FB
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Thanks Daveman,
It seems like the vagal nerve stimulation might have something in common with the (Dr.) Callaghan technique, also known as thought field therapy, emotional freedom technique or tapping therapy.
What you are suggesting has been giving you some relief is a part of the tapping sequence technique that I have found beneficial also for quite a long time, using it to reduce stress, feelings of depression and to dissolve some negative emotion.
A little bit about it here for anyone interested http://en.m.wikipedia.org/wiki/Thought_Field_Therapy
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Hello all,
I am new to this blog and to blogging in general. I am so glad I found this site after many years of not knowing where to turn with symptoms similar to most that have posted here. I have tried naturalists, neurologists, urologists and general doctors and no one has ever heard of the symptoms we face! At this point I just don't know where to turn and what to even try. I would be open hopefully getting this group together for a phone call or something of that nature too. I am glad we can support each other and would like to have some ideas/suggestions on where to even begin. This is my first post so thank you all in advance for the help and most of all support. I am glad to know that there are others who can empathize with what we all are going through.
Thanks!
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I am glad to know that there are others who can empathize with what we all are going through.
Our MAIN strength over the years , Mike!! :)
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Welcome to POISCenter!
(http://schools.springisd.org/images/102-Welcome%20Animation.gif)
Here are some POIS resources which may be helpful to you:
We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:
Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis
More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042
Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos) Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".
Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/) Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!
Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 6th button to your right! (http://www.POISCenter.com/forums/index.php)
Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/
The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.
Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g
Post Orgasmic Illness Syndrome "POIS": Case report
Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt
For more info, check out emi_b's SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen
POIS Research Studies available Upon Request:
1. and 2. POIS Research Studies, 2011
These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.
3. First POIS Research Study, 2002
We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD, Ph.D., and Dr. Dave Schweitzer, MD.
4. Recent POIS Research Study, 2010
CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781
5. British Medical Journal Case Report, 2010
Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
How to get any or all of the above 5 studies: send the Administrators "demografx" or "daveman" a Private Message (PM) with your regular email address (e.g., jim@abc.com) and we'll send you back the PDF(s).
To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.
New York Times article,
January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse
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In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
It can be very helpful to you when dealing with medical professionals to point this out. Click to see
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)
And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)
The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php. The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.
POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome
For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.
Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!
SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
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Thanks Demografx,
I appreciate your response here. Are there any plans to get a group together on the phone or in person? I see that daily testosterone patches have helped you out. Did they do testing for you with that? Just wondering where I should start with all of this.
All the best!
Mike
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Please look for a thread or sub-thread started here at poiscenter about people starting local POIS support groups.
***Does anyone else here remember where that was posted??***
I asked a university endocrinologist to do a full hormonal workup, which revealed significantly low free testosterone. That seemed to be the main culprit in my POIS.
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Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html
Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit. The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014). This is simply done by placing the TENS electrode on the tragus of the ear. The electrical signal given to participants was (200 microseconds @ 30 Hz). Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States. I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.
Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death. Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.
Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:
1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.
ANDS ALSO the original study below by Clancy et al. 2014
2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract
Article by Dr. Lauracostis
There is a reason that Dr, Komisaruk has been approved by the IRB. and that it took so long. These approvals aren't taken lightly, and they have, more than anything, our safety in mind.
Approved TENS devices are approved for specific applications. I imagine it could be very dangerous to use a device that is used for pain mitigation in joints and muscles for a delicate procedure like vagus nerve stimulation. Most TENS devices have "programs" and protocols, and specific electrode configurations. Some applications are "simple", others are very complex.
What make the TENS unit useful for any application, is the combination of factors that make it up. Most of these are controlled by firmware (internal software), but ultimatley come from medical expertise, research and knowledge.
I really don't care which unit Dr. Komisarul will use. If he uses the cheapest he can find, I don't have a problem, it's his knowledge in the choice and application, that I trust.
He has been doing this work and using devices like this for longer than any of us here. He is doing it in combination with careful study of the supposed patient (subject) and careful follow-through, which even includes an fMRI. Most cheap units don't come with an fMRI.
It's Dr. Komisuruk's protocol and follow-through that interest me.
Sorry Daveman, my post was not an attack on Dr. Komisuruk's protocol for the study. The Nemos is what I would use if I was doing the study and could get them. I just posted this because the Nemos is only available in 3 countries, and if using the Nemos in Dr. Komisuruk's study turns out to be beneficial to POIS, you won't be able to get one. If in the future, Nemos is approved for use in the U.S., you will have to pay cash for it unless you have refractory seizures. Daveman, you are correct that it is not a good idea to use the back or shoulder massage setting on a TENS device to stick on your ear. You have to research the device to make sure it has a manual settings besides automatic programs. Furthermore, the standard 2X2 inch electrode pads used for TENS units won't be very useful. I was simply trying to find an alternative to Nemos if this study proves vagal stimulation successful in the study.
I think its worth mentioning that the expensive price of Nemos is I believe related to the fact they have a registered patent on the ear piece which stimulates specific points on the concha of the ear (as opposed to the tragus area mentioned about).
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Thanks for the clarification, FB!
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And now for something completely different:
http://www.theepochtimes.com/n3/1056153-ice-man-on-a-mission-to-scientifically-prove-power-of-mind/
Outside of POIS I have long felt the benefits of having cold showers. Whether I can take it to the next level is another thing. I'm going to go for 100% cold shower tomorrow morning and try not to scare the people I live with... I'm just unsure how to set my time limit....5 mins I reckon to start with...
FB
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Thanks for sharing this FB.
Curiously on this topic, and I never heard of this guy, but his message (if you watch the video in the article, is important), that is, the power we have to heal ourselves.
One small example from what he seems to be saying about helping our immune system....in my POIS history, one of the features, particularly ten years + ago was, I used to suffer so many colds, 15-20 colds a year.
However, since I started taking cold showers after a hot shower some years back, I have not had one cold in over 3 years. It is helpful, because having a bad cold when in POIS is demoralising, like pouring flames on a fire when in POIS, it is like having a seriously bad flu, and it just runs you down even further.
I am not sure I will take up burying myself in ice like this guy, but it shows again the power of the mind, how we seem to have our own internal pharmacy (if we can access it) and the probably the even greater power of the brain !
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Thanks Colm,
So I had the cold shower this morning. It was great after I got over the thought of doing it. Had wash in warm water then cranked it up step by step to 90% cold water. That's pretty cold hear in London.
One thing I should mention here is that I recently shot my gun twice in one day (which is very rare for me). So I am actually on POIS day 5. I think because I have been talking progesterone I was able to do the cold shower thing. If I had pure POIS I think it would have been a lot more challenging.
Taking progesterone while having POIS can make you feel a bit lazy in the morning (but I find I wake up nice and early with it). I think this could be because progesterone lowers your blood pressure. Having a cold shower increases your blood pressure and certainly does wake you up.
So I had the cold shower for about 5 mins and my skin went all pink and I felt good. I started to feel hungry but did not eat. I heard that your immune system regulates if you don't eat when you feel hungry.
After the shower I did my hourly morning mediation and I found and really good sense of calm and invigorating energy around my body. I had chicken skin on my arms from having the cold shower (I was only wearing a t-shirt on top). I'm going to continue this treatment and see if I can increase my ability to have longer cold showers. In the winter early morning meditation on the garden is a good test a well.
Perhaps it would deb good idea to have cold shower immediately after O. I try that some time.
FB
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Well done on the Cold shower FB.
For anyone thinking of this to boost the immune system, remember that it doesn't need to be a long Cold shower, and you can gradually ramp up the cold water temperature. You are correct in what you say about that.
When in POIS, I have found it very difficult to have a full cold shower, don't think I would recommend it straight after O. I used to try this to reverse my skin and Sinus flareup after an O many years ago, but it only made me feel much worse, demoralised in fact.
I would be interested to hear your experience FB, if you decide to try it.
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Maybe you guys should start "The POIS ICE BUCKET CHALLENGE!"
:-) :-)
Stef
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Thanks Guys,
Not sure about the ice bucket yet.
I had the cold shower yesterday and was fine in the morning but afternoon I could not get warm. With progesterone I often get cold in the afternoons (I always take progesterone before I go to bed otherwise in make me feel cold if I take during the day). Anyhow I had to get a hot water bottle and put it on my tummy to try and warm me up. I read actually that putting a hot water bottle on your tummy stimulates your vagus nerve. That's why woman use it when they have their periods. Anyhow it does ease this strange "progesterone coldness" I get. It's not nice to have this coldness, however I am pretty clearheaded and no POIS symptoms. It would be good to know what causes this coldness. I initially thought it was because progesterone temporarily lowers blood pressure but I think there must be more going on than that. I'm rambling now.
Anyhow, I got cold today at 3pm so had a hot shower and feel good for now. So to summarise; cold shower therapy equals suffering when in POIS sooner or later when talking progesterone. I will continue cold showers outside the POIS period though.
POIS is still a damn mystery! FB
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Ingenious idea Stef - LOL
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Saw the following article other day about the BBC educating its reporters to recognize pseudoscience of all types. (Another reason to love the BBC!)
http://www.latimes.com/business/hiltzik/la-fi-mh-fake-science-20140707-column.html
Saw it as another reminder to not be too distracted, and to keep focusing on the research, which as Stef pointed out a few days ago: the POIS study has officially started! This is awesome news! In the past, we all went so long with so few answers, and now we're finally here. It will take some more time, but it will no doubt be worth the wait to get some real science to beat the POIS monster FOR GOOD!
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Saw the following article other day about the BBC educating its reporters to recognize pseudoscience of all types. (Another reason to love the BBC!)
http://www.latimes.com/business/hiltzik/la-fi-mh-fake-science-20140707-column.html
Saw it as another reminder to not be too distracted, and to keep focusing on the research, which as Stef pointed out a few days ago: the POIS study has officially started! This is awesome news! In the past, we all went so long with so few answers, and now we're finally here. It will take some more time, but it will no doubt be worth the wait to get some real science to beat the POIS monster FOR GOOD!
Prancer -- this is a great reminder that there's lots of bogus information out there, and one must always check the source.
In the meantime, I just heard from Demo, who just heard this afternoon from Dr. K. The study is going wonderfully and as planned. The testing phase (of you men) will be starting VERY soon.
So keep the faith!
Stef
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In detecting medical fraudsters ( doctors and not-so-doctors) and fake/questionable medical practices since POIS 2007, I found this source to be very, very helpful!
http://www.quackwatch.com
(http://3.bp.blogspot.com/-qxBiyWyQg-c/Tvnc2twvVEI/AAAAAAAAAYk/xg447PoFtHk/s1600/Quackwatch.jpg)
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I just heard from Demo, who just heard this afternoon from Dr. K. The study is going wonderfully and as planned. The testing phase (of you men) will be starting VERY soon.
So keep the faith!
Stef
Thank you Stef for reporting!! :)
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Quote from: Stef on November 12, 2014, 08:57:17 PM
I just heard from Demo, who just heard this afternoon from Dr. K. The study is going wonderfully and as planned. The testing phase (of you men) will be starting VERY soon.
So keep the faith!
Stef
Quote from: demografx on November 12, 2014, 09:52:11 PM
Thank you Stef for reporting!!
Fabulous!
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Thanks , Myers! :)
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Prancer -- this is a great reminder that there's lots of bogus information out there, and one must always check the source.
In the meantime, I just heard from Demo, who just heard this afternoon from Dr. K. The study is going wonderfully and as planned. The testing phase (of you men) will be starting VERY soon.
So keep the faith!
Stef
I joined the forum for so long , I live in Italy dr K how I can help from here? I tried to contact him via email but got no response, so show here my request : During the last 10 years I have performed numerous tests including an MRI , complete blood tests , and more.
It may be helpful to study dr K?
thanks
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In detecting medical fraudsters ( doctors and not-so-doctors) and fake/questionable medical practices since I began with the POIS Forums in 2007, I found this source to be very, very helpful!
http://www.quackwatch.com
(http://3.bp.blogspot.com/-qxBiyWyQg-c/Tvnc2twvVEI/AAAAAAAAAYk/xg447PoFtHk/s1600/Quackwatch.jpg)
I think this quack watch is a bit ultra western medicine. It debunks acupuncture virtually totally which seems extreme to me. Is't the vagas nerve stimulation that we POISers have hope in something that has been done in in ear acupuncture for centuries, yes! Another example would be Dr Dexter who is western trained medical doctor and he uses acupuncture. He is a migraine specialist and as we know he wrote a paper on POIS. Isn't he a doctor that is prepares to step outside of the standard framework prescribed by the western medical profession? yes, I believe. Why would Dr Dexter take the risk of prescribing progesterone when every other doctor I have spoken is scared stiff to do so. There is a absolutely no medical evidence that validates that progesterone is an effective remedy for POIS. But IT ABSOLUTELY DOES WORK FOR (FOR ME AT LEAST). I don't need to wait for the incredibly slow process of research to validate this.
There are people who want to exploit people financially by using various lies which of course we need to cognizant of.
FB
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FB, excellent expose about Quackwatch!
Btw, Dr Dexter keeps trying to connect with me via via "LinkedIn ", which org I don't care for.
FB, if you are in touch with him please tell him I prefer direct contact, .e.g., PM here at poiscenter.com
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I joined the forum for so long , I live in Italy dr K how I can help from here? I tried to contact him via email but got no response, so show here my request : During the last 10 years I have performed numerous tests including an MRI , complete blood tests , and more.
It may be helpful to study dr K?
thanks
I just wrote to Dr K to ask clarification of your request. Thank you for your patience, vetro79!
Demo
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FB, excellent expose about Quackwatch!
Btw, Dr Dexter keeps trying to connect with me via via "LinkedIn ", which org I don't care for.
FB, if you are in touch with him please tell him I prefer direct contact, .e.g., PM here at poiscenter.com
Hi Demo, OK I have let Dr Dexter know that just now. Thanks FB
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Thanks, FB!
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thank you demo.
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From: demo
Date: November 17, 2014 at 1:32:57 PM PST
To: "Dr. Barry Komisaruk" <brk@psychology.rutgers.edu>
Cc: Stef, Daveman
Subject: Dr K...Can u help briefly clarify?
Quote from: vetro79 on Today at 01:12:55 AM
"I joined the forum for so long , I live in Italy dr K how I can help from here? I tried to contact him via email but got no response, so show here my request : During the last 10 years I have performed numerous tests including an MRI , complete blood tests , and more.
It may be helpful to study dr K?
thanks"
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Dear Stef,
I can't thank you enough for what you have done for our li'l ol' disorder!
I'm sure I'm joined by MANY forumites who think like me.
With much love and respect,
Demo
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...belated...
(http://i858.photobucket.com/albums/ab143/demografx/7EAB8279-2945-424C-A18D-BD7B4B7B1292.gif)
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Hang in there, we are just about ready to get down to the [POIS Research] nitty gritty,
(http://stream1.gifsoup.com/view6/2431844/rocket-launch-o.gif)
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(http://www.retfordbeerfestival.com/wp-content/uploads/2013/04/nittygritty.jpg)
My favorite part!!
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Cool graphic, Prancer!!
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Is there a Skype session today?
I put Skype on my iphone today (just now).
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Thanks Demo, saw Daveman's comment about the POIS research for the first time after you re-posted it. Very exciting to hear!
On a side note, I just checked NSF for the first time in like 4 months....and whaddayaknow, the first thing I see is some more quacks & their sh*tty websites being promoted.
Makes me so glad I left. I wonder when those people will realize how insanely ridiculous they look to everyone else when they try to promote that kind of junk.
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Thanks Demo, saw Daveman's comment about the POIS research for the first time after you re-posted it. Very exciting to hear!
On a side note, I just checked NSF for the first time in like 4 months....and whaddayaknow, the first thing I see is some more quacks & their sh*tty websites being promoted.
Makes me so glad I left. I wonder when those people will realize how insanely ridiculous they look to everyone else when they try to promote that kind of junk.
Hi, Prancer --
No question about it -- the NSF POIS forum has become a free-for-all...unfortunately.
When Demo was the moderator at NSF, he monitored all posts carefully. People who posted frivolous links to unsound scientific theory were given fair warning (by Demo) --> shape up or ship out. He put up with SO MUCH FLACK from forum members who had personal agendas, and who didn't like being warned (privately) by Demo to reign it in.
Personally, I would have said, "The heck with this!" and left the moderation of that forum to someone else. However, Demo persevered.
In the meantime, Daveman felt that "POIS" should have its own forum, and had started constructing a POIS forum, using the Simple Machines platform.
The breaking point occurred when the NSF general moderators advised Demo (and me, individually) to cease and desist all research fund-raising posts. It did not matter that the fund-raising was for scientific research.
I think that says a lot for a forum called, "The Naked Scientists."
So -- here we are! Demo and Daveman left NSF... and this forum came to life! :-)
It's sad because there are men posting on NSF who may not be aware of this POIS forum, and are missing out on REAL discussion.
Stef
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Stef, thanks for a great sum-up of our history since 2007!
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Couldn't agree more Stef! And as we close out the year, many, MANY thanks to Daveman & Demografx for this dedicated POIS forum, allowing all of us to tackle POIS the right way!
-
Thank you, Prancer. You are a great asset to this Forum. Thank you for all your enthusiastic contributions!
-
Hi,
Please see the my new post in POIS Naked Scientists forum....Finally, I got the breakthrough....Let's see how it works for others....Pls see the post there............
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Thank you, Prancer. You are a great asset to this Forum. Thank you for all your enthusiastic contributions!
Thanks Demografx. And thanks to you for being the glue that holds everything together here. You always know the perfect balance between not wanting to suppress too much, and the required removal of spammers, charlatans, and persistent troublemakers.
With Daveman and Stef and you + other wellwishers my glue is SuperGlue!
(http://www.humorsoffice.com/images/2011/05/super-glue.jpg)
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Hi, dear all!
I read this forum seldom. Do we have any news from Dr. Barry Komisaruk?
Did he already examine any of us? When he plans to come to any results?
How we can help him in his work? For example, I have results of medical examination for POIS from Russian State Scientific Center of Endocrinology (Moscow, Russia). I was there for examination for 3 days in July 2014. Where was many tests of my blood and other tests before and after ejaculation. They did not find cause of my "pois", but they scientific rejected many discussed at the forum hypothesis of "pois" reasons.
They created a bank of samples of my blood for possible further research.
May be it will be helpfull for Dr. Barry Komisaruk to communicate with my doctor?
Thank you.
-
The final-final set of approvals from IRB have arrived, so any day now (with allowances for the Holiday Season/vacations @ Rutgers, etc.)
:)
-
Thanks, everyone, for your patience!
We know it's not easy waiting!
:)
Keep The Faith,
Demo/Daveman/Stef
-
(http://greetingscraps.disk9.com/orkut/123%20greetings%20scraps%20ecards/Animations/Happy%20Holidays/u149/Margie077/Pic%20For%20Myspace/For%20My%20Space/happyHolidays71.gif)
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This forum is such an asset, and ...[Daveman is] the defender of it!
Daveman is definitely the defender of this forum!
(http://upload.wikimedia.org/wikipedia/en/thumb/a/ac/Defender2004dvd.jpg/220px-Defender2004dvd.jpg)
-
Best
Wishes
For
A
POIS-reduced
or POIS-free
(http://i858.photobucket.com/albums/ab143/demografx/F05B6791-1EDF-4F01-BC30-4CCCC7AAC683.jpg)
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<received via email>
January 2, 2015
Dear All,
I wish you a happy, healthy and successful new year.
Sincerely,
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941 (work)
fax: 973-353-1171
-
<received via email>
January 2, 2015
Dear All,
I wish you a happy, healthy and successful new year.
Sincerely,
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941 (work)
fax: 973-353-1171
To a happy new year!
-
We know it's been quiet lately on the poiscenter newsfront. We're thinking that --
(http://behappy.me/no-news-is-good-news-120053/download)
-
Hello everyone,
I hope you're doing at least better than before.
I would like to update you about my situation, because it seems that my POIS has changed somehow. I mean that I do not get anymore some of the usual symptoms, especially the brain fog, but instead I am getting others in exchange .
As some of you will remember, niacin just works fine for me. However, some months ago I suffered several episodes of panic attacks/combined with a real illness (I had broncho-spasms which were really scary...), and just after that my POIS changed. I even thought that I didn't had it anymore so I stopped taking niacin, but the reality was that anxiety symptoms were kicking in several hours (and not just after) after having an O., AND were caused by the O. I also had that feeling that I could not function 100%, but it was not as bad as before.
So I decided to take niacin again and follow the normal procedure and I realized that I was able to stop the ANXIETY and the other symptoms from occurring.
I do not have any special theory why this has happened, but I know that some other members have reported suffering anxiety after Orgasm. It was a hard experience, especially the first time, because you do not know what is really happening to you.
I think it would be interesting if someone can describe a similar episode caused by POIS.
Best Regards to everyone and keep up the good job.
PS. I have been carefully "observing" and reading this forum :D
-
FYI -- this came in as a Google alert from Yahoo Health, referring to the just-published POIS study from Beijing. https://www.yahoo.com/health/the-crazy-reason-this-man-never-wants-to-orgasm-110191674787.html.
The Yahoo Health piece states that they interviewed Dr. Marcel Waldinger (he was not involved in this study). Yahoo Health states that Dr. Waldinger is focused on "autoimmunity" in POIS in his lab, which we think may be an innocent misunderstanding on Yahoo Health's part. We're unaware of any studies being carried at this time by Dr. Waldinger, and also wish to point out that Dr. Waldinger's focus in POIS is Semen Allergy. As you know, he published two papers describing the repeated administration of semen desens injections to two men with POIS. We learned later on that he also administered desens injections to several other men with symptoms of POIS.
(As you know, desens is about allergy, not autoimmunity.)
We've not been able to learn the definitive results of Dr. W's desens treatments, as no follow-up papers or further studies of semen desens in POIS were published.
Sincerely,
Demo
-
Thanks Demo & Others,
There is a full report on the Chinese study from January 2015, can be read or downloaded. I didn't do any of them, because I'm assuming it is probably a re-hash of older information.
They just show (at below link), the first page here and shade out the rest to encourage a download.
http://www.readcube.com/articles/10.1111%2Fjsm.12813?r3_referer=wol&tracking_action=preview_click&show_checkout=1
Anyone think it's worth downloading and sharing on our site in some way?
Colm
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Hi All,
Sorry I have not been on the forum much, my personal / work life has gotten extremely busy.
At this moment, approvals and paperwork that can be fairly normal in human testing of new procedures have nade progress very slow, but we are coming through all of this.
First tests will be with a couple of individuals that are as close as possible to testing facilities. The idea is that they will become part of the initial testing which will liekly require adjustments to be made. The test program will be carefully tested step by step and adjustments made until it is properly optimized. This is why it is important that the first individulas are close to the test facilities.
Once the procedure has been optimized, more people will be added and procedures further adjusted.
This waiting is terrible, but, for many of us, we have had POIS for decades.... a little more time pales in comparison.
Thanks for your patience.
-
FYI...Google adds medical information to its search results
http://m.bbc.com/news/technology-31426617
-
Thanks Demo & Others,
There is a full report on the Chinese study from January 2015, can be read or downloaded. I didn't do any of them, because I'm assuming it is probably a re-hash of older information.
They just show (at below link), the first page here and shade out the rest to encourage a download.
http://www.readcube.com/articles/10.1111%2Fjsm.12813?r3_referer=wol&tracking_action=preview_click&show_checkout=1
Anyone think it's worth downloading and sharing on our site in some way?
Colm
Dr Goldmeier sent me the study. I have it in PDF. I'm not sure if can post it here.
FB
-
Thanks Demo & Others,
There is a full report on the Chinese study from January 2015, can be read or downloaded. I didn't do any of them, because I'm assuming it is probably a re-hash of older information.
They just show (at below link), the first page here and shade out the rest to encourage a download.
http://www.readcube.com/articles/10.1111%2Fjsm.12813?r3_referer=wol&tracking_action=preview_click&show_checkout=1
Anyone think it's worth downloading and sharing on our site in some way?
Colm
Dr Goldmeier sent me the study. I have it in PDF. I'm not sure if can post it here.
FB
Hi Floppy,
As much as we'd like to read the PDF of the entire article (I definitely would!), it shouldn't be posted because the publication is "owned" by Wiley Online publications, and they have the right to charge for reprints.
You could tell us about it if you want to. :-)
Stef
-
"The living hell of a man who orgasms 100 times a day"
http://nypost.com/2014/09/22/the-living-hell-of-the-man-who-orgasms-100-times-a-day/
-
"The living hell of a man who orgasms 100 times a day"
http://nypost.com/2014/09/22/the-living-hell-of-the-man-who-orgasms-100-times-a-day/
Demo -- what a terrible situation for this man!
Dr. Wise has worked with women who have this condition, and Dr. Komisaruk performed a really interesting MRI study involving women with PGAD. Perhaps you should forward the article to them?
Stef
-
Thanks Demo & Others,
There is a full report on the Chinese study from January 2015, can be read or downloaded. I didn't do any of them, because I'm assuming it is probably a re-hash of older information.
They just show (at below link), the first page here and shade out the rest to encourage a download.
http://www.readcube.com/articles/10.1111%2Fjsm.12813?r3_referer=wol&tracking_action=preview_click&show_checkout=1
Anyone think it's worth downloading and sharing on our site in some way?
Colm
Dr Goldmeier sent me the study. I have it in PDF. I'm not sure if can post it here.
FB
Thanks FB,
The most interesting thing that I read in the PDF was close to the end. I am uncertain if this (the recent Chinese POIS study), was a truly validated study or not, but the paper suggests it was.
Related to Waldinger Theory the following outcome / results from the Chinese study...
" We identified an affected patient with a mildly positive reaction (grade 1+) to intracutaneous skin injection and skin prick testing of seminal fluid at a 1:10 and 1:100 dilutions. Waldinger et al. [7] reported two patients with a significantly positive reaction (grade 4+) to seminal fluid at a 1:40,000 dilution. The current patient also underwent skin testing with a 1:40,000 dilution, but the result was negative (data not shown). Nguyen et al. [10] per- formed a skin prick and intradermal testing with a fresh sample of autologous semen in affected men, with mildly positive results. Intradermal testing, however, was significantly positive and associated with a larger reaction. Difference in the skin reac- tions to seminal fluid may be explained by the different grading systems and skin test procedures used."
Conclusion continued...
" One interesting finding of the current (Chinese) study was that three healthy control individuals had positive skin reactions to autologous seminal fluid. Their responses were more pronounced than that of the affected patient. The IC (titer 1:10 and 1:100) was grade 2+ positive, while the SPT was negative in three healthy control individuals.'
Go figure that one !!
-
"The living hell of a man who orgasms 100 times a day"
http://nypost.com/2014/09/22/the-living-hell-of-the-man-who-orgasms-100-times-a-day/
Demo -- what a terrible situation for this man!
Dr. Wise has worked with women who have this condition, and Dr. Komisaruk performed a really interesting MRI study involving women with PGAD. Perhaps you should forward the article to them?
Stef
Thanks, Stef! (I just forwarded to Dr K and Dr Wise, as soon as I saw your comment. ) Appreciated!
-
Hi All,
Sorry I have not been on the forum much, my personal / work life has gotten extremely busy.
At this moment, approvals and paperwork that can be fairly normal in human testing of new procedures have nade progress very slow, but we are coming through all of this.
First tests will be with a couple of individuals that are as close as possible to testing facilities. The idea is that they will become part of the initial testing which will liekly require adjustments to be made. The test program will be carefully tested step by step and adjustments made until it is properly optimized. This is why it is important that the first individulas are close to the test facilities.
Once the procedure has been optimized, more people will be added and procedures further adjusted.
This waiting is terrible, but, for many of us, we have had POIS for decades.... a little more time pales in comparison.
Thanks for your patience.
Daveman,
Even when you're busy, your (http://images2.fanpop.com/image/photos/13700000/Realistic-Spirit-and-Rain-spirit-and-rain-13709730-800-1045.jpg) is with us!
-
Hello everyone,
I hope you're doing at least better than before.
I would like to update you about my situation, because it seems that my POIS has changed somehow. I mean that I do not get anymore some of the usual symptoms, especially the brain fog, but instead I am getting others in exchange .
As some of you will remember, niacin just works fine for me. However, some months ago I suffered several episodes of panic attacks/combined with a real illness (I had broncho-spasms which were really scary...), and just after that my POIS changed. I even thought that I didn't had it anymore so I stopped taking niacin, but the reality was that anxiety symptoms were kicking in several hours (and not just after) after having an O., AND were caused by the O. I also had that feeling that I could not function 100%, but it was not as bad as before.
So I decided to take niacin again and follow the normal procedure and I realized that I was able to stop the ANXIETY and the other symptoms from occurring.
I do not have any special theory why this has happened, but I know that some other members have reported suffering anxiety after Orgasm. It was a hard experience, especially the first time, because you do not know what is really happening to you.
I think it would be interesting if someone can describe a similar episode caused by POIS.
Best Regards to everyone and keep up the good job.
PS. I have been carefully "observing" and reading this forum :D
Hey Observer!
Thanks for your update, and very sorry to hear about your illness and anxiety attacks. I think I have experienced that trade off-type thing you mentioned. It doesn't happen very often, but early on especially, shortly after first developing symptoms, I noticed that days when I had little brain fog, I'd feel some weird chest pain and generally feel more depressed. That was early on though. I believe my POIS has changed slightly, and is now more of a severe brain fog/focus/frustration issue, and less other symptom types. I never did have the bronchial spasms though.
Keep on observing and updating once in a while!
- Prancer
-
From Discover Magazine
February 19, 2015 (Google Alert on POIS -- free to subscribe - see following post)
"Can You Be Allergic To Your Own Semen?"
http://blogs.discovermagazine.com/seriouslyscience/2015/02/19/can-allergic-semen/#.VOZe94Y76nM
Re-hash of Waldinger info...
-
How to Create a Google alert
-Visit Google Alerts. https://www.google.com/alerts
-In the "Create an alert about" box, enter in the words you want to get email notifications for (e.g., POIS, Komisaruk, etc.).
-Click Show options to customize things like how often you get alerts, types of websites you want to search, and the email address for your alerts.
-Click Create Alert.
-You can also create an alert by clicking the + next to any of the suggested topics that you see on the Google Alerts page.
Once your alert is set up, you’ll start getting emails anytime Google finds new search results for your keywords.
https://support.google.com/alerts/answer/4815696?hl=en
-
Hello everyone
I am happy to tell u that there may be a way to cure pois and that it is not irreversible. I was always desperate to escape from pois hell. I think i may have found a solution. I was reading all the posts in NSF forum and i came across a member named Gcrisp, who developed POIS after 50 yrs when he was asked to take statins. Fortunately he was able to recover from pois after stopping statins and also after eating eggs daily for a few months. Since i hv tried every other solutions and nothing worked, i started to eat eggs daily, i ate 2 eggs daily for a month and then i started to eat 3 eggs daily. I have been eating 3 eggs daily for 2 months 28 days. My pois was a type where i recover from tiredness within 2 days, but the pois hangover never lifts, it is always there. After eating eggs for 1 and half month my pois duration reduced to 3 days, then with each week pois duration reduced by 6 hours. Now my pois lasts for 1 day 13 hrs, i really hope as days go pois duration would get reduced even further.
I felt that i should share this information with u , becuase if i was in your place i would be desperate even for a little help.
It takes atleast a month to feel benefits of eating eggs. I dont know about the quantity of eggs to eat daily, but i feel very good by eating 3 eggs daily.
Please do read Gcrisp post on NSF forum for more details.
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Dear Forum,
Dr Nan Wise here!
I am making significant progress interviewing some wonderful gentlemen who have already volunteered for the study. These phone and SKYPE interviews have been giving the team lots of food for thought. There is nothing like going into a deep, open-ended conversation to develop a more nuanced perspective on the syndrome. Dr Barry and I have been discussing the information I have been gathering in these interviews--and how this relates to some of our ideas about the syndrome.
The heart rate variability equipment has arrived. Dr Barry is becoming acquainted with the computer programs which analyze the output. We should be ready by April to bring in some of the gentlemen who live locally to begin the lab-based part of the study.
Thank you for your patience. I have tremendous respect for all of you and empathy for how much POIS affects your lives.
Warmly,
Dr Nan
:) :) :)
-
Hi to all POIS sufferers,
I invite you to take a few minutes and answer 3 short polls, on this forum, that will help the research team in having a more accurate vision of some aspects of POIS they asked about. So, please, click on the following links, and add your input to these polls. This will help everybody having POIS, you included !
If you want, you can contribute more than just answering the polls by adding more details in the reply/comments section of the polls.
So, here are the links for those 3 polls:
Poll #1, about onset of symptoms: http://poiscenter.com/forums/index.php?topic=2033.0
Poll #2 , about duration of symptoms: http://poiscenter.com/forums/index.php?topic=2034.0
Poll #3 , a survey on POIS symptoms: http://poiscenter.com/forums/index.php?topic=2035.0
Thank you very much for your participation!
Quantum
-
I got a message on reddit from a user there who created a POIS subreddit. Here's the link to it if anyone is interested:
http://www.reddit.com/r/POIS/comments/302j7v/discussion_general_pois_discussion_thread_if/
-
As fucked up as it sounds
Many of us (all of us?) were very sick in our childhood. And that called for a lot of antibiotics...
which may have opened the door for a number of malicious organisms to live in our intestines
and those organisms may be responsible for our symptoms
-
I can't find the topic. But someone said that he had a test of his prostate. And that doctor said that after the O. there was a lot of blood going to the prostate. I asked my doctor about this. He said that this means that your immune system thinks there is an infection an sends blood, white Blood cells, to attack the infection. This supports the allergy theory.
-
What+if+there's+an+actual+infection.++many+of+those+who+undergone+desens+report+improvements+in+symptoms+but+issues+in+thee+prostate+later+on
-
Vandemolen, i Think you are searching this :
FloppyBanana+ All,
Being in my late sixties i had( Benign Prostate Hyprotophy) you will all get it as you get older,where the Prostate expands and blocks the pee tube.had the standard operation to cut away part of the prostate to reduce the size of it and now can pee normaly, but the Urolgy guys found a very high level of Inflamation present in the prostate. This opperation has made no difference to Pois, i am now taking antinflamatorys before and after Pois as suggested by specialist, they help as did testoterone patches precribed by my local Dr,but are not the answer. I may now try Progesterone and Niacin,
M.R.I. scan of the brain seems to be the way forward ,a scan before Pois and one day after Pois enableing Doctors to work backwords from the brain.
Regards to all . Lineman
-
Thanks Starksky but it was a more recent post. In 2015.
-
I can't find the topic. But someone said that he had a test of his prostate. And that doctor said that after the O. there was a lot of blood going to the prostate. I asked my doctor about this. He said that this means that your immune system thinks there is an infection an sends blood, white Blood cells, to attack the infection. This supports the allergy theory.
I agree, Vandemolen, it sure fits with an allergy reaction ( hypersensitivity Type I ). One of the well known effect of the histamine released by mast cells, when an allergy reaction occurs, is vasodilation. All those blood vessels opening larger are responsible for all this blood rushing in. They are also immune messengers released that attracts white blood cells to the site. We all know about the redness, edema, pain and heat sensation at the site of a skin allergic reaction... these are the 4 main signs of inflammation. They can occur as well inside the body - they're just less visible, as in the case of the prostate.
I wonder if some POIS sufferers with local allergic reaction at the prostate have difficulty initiating miction while in POIS, and have urine pressure problem, because prostate swelling impairs the passage of urine in the urethra ( just like in older men with benign prostatic hyperplasia ). I do not have symptoms in the allergy cluster ( type I hypersensitivity), so I can't tell.
-
Cross-posted from "How Does POIS Affect Your Dreams?"
http://poiscenter.com/forums/index.php?topic=1087.0
Once dreamt of 2 planets disastrously colliding, right after an NE.
Sure enough, 4 disastrous days of POIS followed!
(http://blogs.warwick.ac.uk/images/physoc/2008/09/25/astronomy_art_2008_by_lynette_r_cook_-prv.jpg?maxWidth=800&maxHeight=600)
-
Myself and some others are Hoping to get a bunch of guys together for some online communication. If you would like to then, please msg me and we could go over the details and explore the idea further. Skype may be a starting point and then some conference calls of sorts. Eventually meeting in person at the study site or a major city would be optimal.
Thanks guys.
-- Andy
-
I can't find the topic. But someone said that he had a test of his prostate. And that doctor said that after the O. there was a lot of blood going to the prostate. I asked my doctor about this. He said that this means that your immune system thinks there is an infection an sends blood, white Blood cells, to attack the infection. This supports the allergy theory.
I agree, Vandemolen, it sure fits with an allergy reaction ( hypersensitivity Type I ). One of the well known effect of the histamine released by mast cells, when an allergy reaction occurs, is vasodilation. All those blood vessels opening larger are responsible for all this blood rushing in. They are also immune messengers released that attracts white blood cells to the site. We all know about the redness, edema, pain and heat sensation at the site of a skin allergic reaction... these are the 4 main signs of inflammation. They can occur as well inside the body - they're just less visible, as in the case of the prostate.
I wonder if some POIS sufferers with local allergic reaction at the prostate have difficulty initiating miction while in POIS, and have urine pressure problem, because prostate swelling impairs the passage of urine in the urethra ( just like in older men with benign prostatic hyperplasia ). I do not have symptoms in the allergy cluster ( type I hypersensitivity), so I can't tell.
I've also noticed that it's more difficult to urinate while I'm symptomatic. I've never had my prostate checked. I didn't realize an inflamed prostate could be a sign of an allergy or auto immune response. That's fasinating!
-
I wonder if some POIS sufferers with local allergic reaction at the prostate have difficulty initiating miction while in POIS, and have urine pressure problem, because prostate swelling impairs the passage of urine in the urethra ( just like in older men with benign prostatic hyperplasia ). I do not have symptoms in the allergy cluster ( type I hypersensitivity), so I can't tell.
I've also noticed that it's more difficult to urinate while I'm symptomatic. I've never had my prostate checked. I didn't realize an inflamed prostate could be a sign of an allergy or auto immune response. That's fasinating!
Hi Hoping,
The prostate is like a donut, circling the urethra tightly. In bening prostatic hyperplasia (BPH) the prostate gets swollen, it compresses the urethra, so the urine flow is blocked or impared. BPH is a chronic condition, present in many older men, but I have made the guess that it can be a temporary condition for POIS sufferers who have prostate inflammation among their symptoms ( and what you says seems to confirm that it indeed happens). For a more visual explanation of what happens when the prostate is swollen, see at http://en.wikipedia.org/wiki/Benign_prostatic_hyperplasia#/media/File:Benign_Prostatic_Hyperplasia_nci-vol-7137-300.jpg . This illustration is made for BPH , but it's the same thing in POIS, except it's not chronic. Same symptoms as BPH should occur when prostate is swolllen during POIS,, like difficulty to urinate, poor flow, dribbling, going to the bathroom often ( because bladder not emptying completely), nocturia ( having to go to the bathroom many times during the night), and so on.
BPH is often treated safely with saw palmetto, which decreases prostate inflammation. Interestingly, some members, like Cornelius and Vincent M have used saw palmetto with success for their POIS symptoms, and surprisingly, it seems to have helped with more than just difficulty to urinate and local prostate symptoms ( see at http://poiscenter.com/forums/index.php?topic=207.msg2536#msg2536 )
-
Myself and some others are Hoping to get a bunch of guys together for some online communication. If you would like to then, please msg me and we could go over the details and explore the idea further. Skype may be a starting point and then some conference calls of sorts. Eventually meeting in person at the study site or a major city would be optimal.
Thanks guys.
-- Andy
Great idea, Andy! I've seen several other forum members express interest in this. Demo
(http://t.fod4.com/t/fa86afd4e8/c480x270_61.jpg)
-
Did someone try Amitriptyline (Elavil, Endep, Levate)? It is the most widely used tricyclic antidepressant (TCA). But they also use it for UTI and problems with the prostate. For depression you have to take 75 mg a day. The doctor gave me 10 mg a day. It didn't help. I read that people with prostate problems use 30 mg a day. So I am goinimg to try 20 mg a day and if it doesn't help 30 mg.
It might also help againt some symptoms of POIS. Because of this medicine your body makes more serontonin.
-
Daveman and I contacted NORD to get a copy of Dr. Komisaruk's first interim report (due ~ 6 months after start of study). It should be understood that these interim reports are extensive and in-depth. NORD's MAC reviews them for scientific information, merit and accuracy before approving them. This report was received at the end of April 2015, and approved by the MAC.
As you can understand, these reports are highly confidential until they are publicly published in a journal. But, NORD includes a request for a brief summary that can be publicly posted.
Here's the public summary for the first interim report. It's written in general terms which is to be expected:
"The IRB applications authorizing our study have been approved, the POIS questionnaire characterizing relevant medical history and symptomatology has been developed, site-tested, and expanded, and will now, upon IRB approval, be distributed to the POIS forum for more extensive response and analysis.
POIS sufferers have been contacted, interviewed, and local POIS persons will be the first to participate in the physiological interventions. The necessary equipment has been obtained, the physiological measurement methods have been developed and are functioning properly, and the necessary fMRI procedures and analysis methods have been developed and are ready to be deployed."
The NORD research grant administrator additionally advised --
"The next report is due on October 25, 2015. The PI has also been granted a no cost extension for a year due to some delays round receiving IRB approval for the study."
Daveman and I will request from NORD the next interim report, due at the end of October 2015.
Demo & Daveman
-
I just sent an email to Dr K, cc: Dr Nan Wise, copy/pasting the [below] 3 posts in the body of the email.
Email Subject line: "Incorporating POIS forum posts to augment your Study".
Dr Nan Wise's reply:
On Jun 17, 2015, at 4:58 AM, nanwise@psychology.rutgers.edu wrote:
"This is very interesting. I will discuss this with the rest of the team!"
demografx
Administrator
Hero Member
Posts: 1929
Re: Allergy or neurological
« Reply #38 on: June 12, 2015, 06:22:04 PM »
Quote from: Colm on June 11, 2015, 03:41:25 PM
...I would assume the researchers are keeping in touch with these great
contributions on the forum here, and bringing the newest thinking into
their analysis...
I encourage you, Colm, and all, to send an email to Barry or Dr Nan,
expressing your (Colm's) sentiments above. I think it's critical for at
least a Rutgers staffer to read/study/convey to all the POIS-Rutgers Team.
Thanks.
Report to moderator 104.172.245.112 (?)
Nearly POIS-free symptomatically, treatment consisting of daily (365
days/year) testosterone patches.
TRT must be checked out carefully with your doctor due to fertility,
cardiac and other risks associated with it.
30+ years of severe 4-days' POIS, married, raised a family, started/ran a
business
demografx
Administrator
Hero Member
Posts: 1929
Re: Allergy or neurological
« Reply #39 on: June 12, 2015, 06:27:38 PM »
Timing is good since we are now collaborating on meaningful member
characteristics. Your postings analysis may prove an interesting part of
the study. Agree?
Report to moderator 104.172.245.112 (?)
Nearly POIS-free symptomatically, treatment consisting of daily (365
days/year) testosterone patches.
TRT must be checked out carefully with your doctor due to fertility,
cardiac and other risks associated with it.
30+ years of severe 4-days' POIS, married, raised a family, started/ran a
business
b_jim
Sr. Member
Posts: 409
Re: Allergy or neurological
« Reply #40 on: Today at 01:20:42 AM »
I sincerely hope that searchers use our posts. There is more chance if a
large number of cases have the same observations.
For example whan we had 15... 20 and more Poisers improving symptoms with
niacin.
Nan Wise, Ph.D
Certified Sex Therapist, AASECT
Assistant Research Professor, Psychology,Rutgers-Newark
Fellow, The American Psychotherapy Association
Fellow, The National Board for Clinical Hypnotherapists
Board Certified Diplomate, The American Board of Examiners in Social Work
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Happy Father's Day!
Thank you , Demo!
I am father of two children ( 20 y/o boy and 13 y/o girl ) that I am very proud of!
I am very glad that POIS didn't keep me from having children. They are two extraordinary persons, and they are are a huge source of happiness in my life :-)))
Happy fathers day to every father of this board!
Quantum
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A breakthrough in POIS brought to you by Daveman and demo. With Stef adding: "POIS Gains Popularity Around the World"
http://www.poisnoy.com/?author=1
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Shop here for POIS ! What a bargain !!!
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Colm, I wonder if we get 10% off for being Forum members.
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Worth a try Demo ! I think you should aim a bit higher though !
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11% ????
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A breakthrough in POIS brought to you by Daveman and demo. With Stef adding: "POIS Gains Popularity Around the World"
http://www.poisnoy.com/?author=1
Ha, so funny!! At least we have a sexy illness. No wonder everyone get excited when I start mentioning POIS. (Work hard, play hard, think POISitive - hahaha.)
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LOL, Prancer! :)
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A breakthrough in POIS brought to you by Daveman and demo. With Stef adding: "POIS Gains Popularity Around the World"
http://www.poisnoy.com/?author=1
Ha, so funny!! At least we have a sexy illness. No wonder everyone get excited when I start mentioning POIS. (Work hard, play hard, think POISitive - hahaha.)
And this website also notes that, on Facebook: "3,797 people like POIS."
:)
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And for the younger guys here on the forum, this should really impress the new girlfriends and show you aren't embarrassed by POIS.
Just arrive for that first date in this ..... https://yho.com/13kff
Maybe Rutgers awards this to the best FMRI !
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And for the younger guys here on the forum, this should really impress the new girlfriends and show you aren't embarrassed by POIS.
Just arrive for that first date in this ..... https://yho.com/13kff
Maybe Rutgers awards this to the best FMRI !
(http://i858.photobucket.com/albums/ab143/demografx/CB894530-C9AA-4867-8568-1E1D0DC6ECA9.jpg)
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(Just emailed the above post to Dr K & Dr W.) :)
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(http://i858.photobucket.com/albums/ab143/demografx/3B6F2B0F-6FB1-47DA-BFDA-091706A20645.jpg)
See how glamorous our lives are??? :)
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Maybe Rutgers awards this to the best FMRI !
Don't forget, Colm, they (or NORD) also owe us a week in Las Vagus [sp] if the research is successful!
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(http://www.factoryitalia.com/images/g/grafica-graziella-pois.jpg)
Maybe we'll also get T-shirts with this design?
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Maybe we'll also get T-shirts with this design?
If it helps spread awareness, I'd wear it.
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Thanks, Prancer!
(http://i858.photobucket.com/albums/ab143/demografx/E76D7AFF-F515-4161-A691-E5C9BF0CE79D.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/8B5440F2-75E3-400D-851D-AB54EBFA9905.gif)
Happy 4th!
Daveman & Demo
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Welcome back, martin! :)
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Thank you Demo! I was reading some of the posts here, but not everyday. I registered to give a username for the survey.
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Hello everyone
I have been following Gcrisp's (NSF Forum) advice of eating eggs for POIS . I have been eating 2 eggs daily for 7 months. My POIS duration has reduced from 5 days to 4 days. Duration of Pois after nocturnal emission has also reduced
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Great, Bulbo!
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I'm not sure we're winning the battle with spammers. We're still having to delete several per day, and some of them are pretty gross!
Several members signed up recently to move to a new version and put in a spam filter. The cost was $240, we put in $300. There was a good filter we had installed a year or two ago before the last upgrade, but the upgrade ate it up. That filter let us ban, delete AND report spammers before they got into any position to post.
I would like to install that same filter again, but it would cost more than the amount we have left ( which is $60 or one hour).
It is a good filter and shoul help in the short term, but forum maintenance is an ongoing thing, so I suspect that what we really need is around $150 to $200 per month to keep things clean.
Obviously if I could put in the time like I used to be able to do, there would be no cost. There have been some offers to help physically (and free) but for one reason or another, it really comes down to the fact that we need an independant service to keep things clean.
When people aren't paid, the committment isn't the same. There are security issues, etc. etc.
So I'm looking for ideas, perhaps small fundraising efforts to get the relatively small quantity of $150 to $200 per month coming in to help out.
We have an alternate site at google groups, http://tinyurl.com/nscsbfs where we can go if we run intro problems like we had before where the site was down for a short time, and we will probably be going there more completely if we don't get much response to helping out with the maintenance.
Please, feedback.
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I'm not sure we're winning the battle with spammers. We're still having to delete several per day, and some of them are pretty gross!
Several members signed up recently to move to a new version and put in a spam filter. The cost was $240, we put in $300. There was a good filter we had installed a year or two ago before the last upgrade, but the upgrade ate it up. That filter let us ban, delete AND report spammers before they got into any position to post.
I would like to install that same filter again, but it would cost more than the amount we have left ( which is $60 or one hour).
It is a good filter and should help in the short term, but forum maintenance is an ongoing thing, so I suspect that what we really need is around $150 to $200 per month to keep things clean.
Obviously if I could put in the time like I used to be able to do, there would be no cost. There have been some offers to help physically (and free) but for one reason or another, it really comes down to the fact that we need an independant service to keep things clean.
When people aren't paid, the committment isn't the same. There are security issues, etc. etc.
So I'm looking for ideas, perhaps small fundraising efforts to get the relatively small quantity of $150 to $200 per month coming in to help out.
We have an alternate site at google groups, http://tinyurl.com/nscsbfs where we can go if we run intro problems like we had before where the site was down for a short time, and we will probably be going there more completely if we don't get much response to helping out with the maintenance.
Please, feedback.
THANK YOU, DAVEMAN!
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What about human approval of new members? So that means completely stopping all new sign-ups like you did before. And if someone new wants to join, they would have to message demografx or someone else, perhaps at NSF. Then maybe once a week (more or less) the genuine members' requests can be received & approved. It would be a slight inconvenience & delay for new members, but it would guarantee no spam would get through, and wouldn't require much maintenance because the posts would all come from trusted users, rather than from brand new members (which are the main source of the spam).
And thanks for the continuing effort!
-
I'm not sure we're winning the battle with spammers. We're still having to delete several per day, and some of them are pretty gross!
Several members joined up recently to move to a new version and put in a spam filter. The cost was $240, we put in $300. There was a good filter we had installed a year or two ago before the last upgrade, but the upgrade ate it up. That filter let us ban, delete AND report spammers before they got into any position to post.
I would like to install that same filter again, but it would cost more than the amount we have left ( which is $60 or one hour).
It is a good filter and should help in the short term, but forum maintenance is an ongoing thing, so I suspect that what we really need is around $150 to $200 per month to keep things clean.
Obviously if I could put in the time like I used to be able to do, there would be no cost. There have been some offers to help physically (and free) but for one reason or another, it really comes down to the fact that we need an independant service to keep things clean.
When people aren't paid, the committment isn't the same. There are security issues, etc. etc.
So I'm looking for ideas, perhaps small fundraising efforts to get the relatively small quantity of $150 to $200 per month coming in to help out.
We have an alternate site at google groups, http://tinyurl.com/nscsbfs where we can go if we run in to problems like we had before where the site was down for a short time, and we will probably be going there more completely if we don't get much response to helping out with the maintenance.
Please, feedback.
What about human approval of new members? So that means completely stopping all new sign-ups like you did before. And if someone new wants to join, they would have to message demografx or someone else, either here or at NSF (if there are phony requests here). Then maybe once a week (more or less) the genuine members' requests can be received & approved. It would be a slight inconvenience & delay for new members, but it would guarantee no spam would get through, and wouldn't require much maintenance because the posts would all come from trusted users, rather than from brand new members (which are the main source of the spam).
And thanks for the continuing effort!
Excellent ideas, Prancer!
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What about human approval of new members? So that means completely stopping all new sign-ups like you did before. And if someone new wants to join, they would have to message demografx or someone else, perhaps at NSF. Then maybe once a week (more or less) the genuine members' requests can be received & approved. It would be a slight inconvenience & delay for new members, but it would guarantee no spam would get through, and wouldn't require much maintenance because the posts would all come from trusted users, rather than from brand new members (which are the main source of the spam).
And thanks for the continuing effort!
Thanks for the response Prancer.
Human approval sounds bullet proof, but it is actually fairly messy. We receive about 200 to 400 requests per day. Most of course are machines and spammers. Each of these registration requests put an Email in the inbox. The title and content of the Email are identical except for the username. The title itself doesn't have the username. So we have to ask the registrants to send a special mail manually requesting attention. Some don't see the request, some don't include their username in the request etc. etc. We have to go through the hundreds of requests to find an original one. We miss some. This requires time and attention, and we still get several complaints that people are not being attended.
So ideally, filter databases are the best route.
Another thing that helps a fair bit is regular blocking of spam robot scanners. There are many, many of them and it's like trying to kill flies with your hands. I'll have to check to see of there are bot blockers.
Most suggestions here are going to require that we physically maintain the site ourselves. That's where the problem lies. We, I, just can't do that now.
I've put in several years, but now I'm working on the final retirement project of my life. I'm 66 and this last project should sinch up the future for my family and grandchildren in the future. I have to give it my all, besides it being an opportunity of a lifeftime.
Whatever we do has to be low maintenance on our part. In the end, among 100 or so members, a monthly bill of $200 is not much to pay, to have a place where people can share and learn about POIS in peace.
Thanks for the input, and keep it coming.
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Thanks for the response Prancer.
Human approval sounds bullet proof, but it is actually fairly messy. We receive about 200 to 400 requests per day. Most of course are machines and spammers. Each of these registration requests put an Email in the inbox. The title and content of the Email are identical except for the username. The title itself doesn't have the username. So we have to ask the registrants to send a special mail manually requesting attention. Some don't see the request, some don't include their username in the request etc. etc. We have to go through the hundreds of requests to find an original one. We miss some. This requires time and attention, and we still get several complaints that people are not being attended.
So ideally, filter databases are the best route.
Another thing that helps a fair bit is regular blocking of spam robot scanners. There are many, many of them and it's like trying to kill flies with your hands. I'll have to check to see of there are bot blockers.
Most suggestions here are going to require that we physically maintain the site ourselves. That's where the problem lies. We, I, just can't do that now.
I've put in several years, but now I'm working on the final retirement project of my life. I'm 66 and this last project should sinch up the future for my family and grandchildren in the future. I have to give it my all, besides it being an opportunity of a lifeftime.
Whatever we do has to be low maintenance on our part. In the end, among 100 or so members, a monthly bill of $200 is not much to pay, to have a place where people can share and learn about POIS in peace.
Thanks for the input, and keep it coming.
Hi Daveman and everyone,
The number of bots and illegitimate registration attempts is extremely high here, and it must be caused by the presence in our posts of words like "ejaculation", "penis", "erection", 'masturbation" and the like, which attract the bots here. It is quite obvious to me, as other forums do not have this level of spamming attempts ( at least, those I have been running ). Considering what POIS is about, this won't change.
There are mainly two options, then. Either you put together a team of trusted persons that will take turns at managing manually the new memberships and their posts ( and you do not seem to be in favor of this option ) or you put up a Paypal Donation link for the forum in order to buy an efficient spam bot blocker.
If this forum has raised 33k for a study, it should be able to raise a few hundreds in order to buy a spam bot blocker. After having bought a few of them, the remaining work of manual spam deleting and illegitimate members removal should be far less demanding.
I think you should still consider to train a trusted member in order to help you, even if a filter is bought. I know it is hard as a founder to do that and let go a bit, after so many years and so many hours put on this forum. But you have better things to do now, and this retirement project sounds great for you and your family, and, by the way, I wish you great financial success with it :-)
Let us know when a Paypal link will be available, I will be more than happy to do my part in buying a spam filter for the forum.
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Hi All,
Just to add some commentary here, I've been helping Daveman by deleting spam posts and spam accounts for several months. That system was a very good one when the spam filter was working -- even when it was only working 50% of the time.
But these days it's like chasing your shadow.
Re: new member registrations, Daveman had set up a very good system and I was also managing that. It was very simple to manage, and a new registrant would be approved in 1-2 days. FYI, the human registration requests stood out very obviously from all the spam bot registration requests.
But the current spam filter is like a mosquito screen that's been torn.
If this forum ultimately needs to move to the Google group platform that was started ~ one year ago, during a similar SMF spam crisis, I think everyone would get used to it quickly. Google groups are very easy to use, have decent spam blockers, and are FREE.
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter
It would be a good idea for many of you to go over to the POIS Google group that had been set up, just to check it out, to get a sense for it. Once your posts start populating it, it would develop a great personality. ??
I'm not pushing for that...please don't think I am. It's just that raising money for a new spam blocker, plus donations to cover monthly maintenance fees on SMF -- could become unwieldy.
Stef
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Hi every one
100 poisers 3dollars by head
We can pay every year 36e
Ok for me
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Hi every one
100 poisers 3dollars by head
We can pay every year 36e
Ok for me
i am down with paying. If we move what happens to all the stuff generated here.
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Thanks Daveman & Stef & any others for the hard graft of spam deletion here.
Not sure on your calculation there above Outsider, but the idea of a certain number of people donating to Paypal an x amount per y period, over the year for spam filter here, is probably ideal, rather than us going back to that google groups. Then we potentially lose all this rich information here. The information here is so valuable to any new POISers finding the forum.
Obviously the reality of a consistent stream of donations to support ongoing spam filter might be the 'deal braking' issue. I am prepared to also donate money or time, in relative proportion to a sensible and financially sound decision.
As mentioned previously, there are also some offshore technical individuals who might take this on as a task, at an affordable rate. They might also raise the SEO level on the site, which falls (it would appear) below NSF & Reddit POIS sites, and oddly may struggle to be found under obvious search terms.
For instance, although I only know the basics from my work web space, the HTML page Meta source info below on POIS Forum doesn't have any reference to what people might search for "keywords", just PHP etc. This is NOT a criticism, and in fact it may be a choice you made, so the site would not attract more spam if we had the keywords optimized?
<meta name="description" content="Post Orgasmic Illness Syndrome (P.O.I.S.) - Index" />
<meta name="keywords" content="PHP, MySQL, bulletin, board, free, open, source, smf, simple, machines, forum" />
Quantum has also I see made some other good suggestions for consideration.
However, it is not fair to expect just 1 - 3 individuals spending time long-term, on behalf of others in manually deleting the spam, so hopefully some others might come on here and state if they are willing to donate money or time.
More debate?
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What about human approval of new members? So that means completely stopping all new sign-ups like you did before. And if someone new wants to join, they would have to message demografx or someone else, perhaps at NSF. Then maybe once a week (more or less) the genuine members' requests can be received & approved. It would be a slight inconvenience & delay for new members, but it would guarantee no spam would get through, and wouldn't require much maintenance because the posts would all come from trusted users, rather than from brand new members (which are the main source of the spam).
And thanks for the continuing effort!
Thanks for the response Prancer.
Human approval sounds bullet proof, but it is actually fairly messy. We receive about 200 to 400 requests per day. Most of course are machines and spammers. Each of these registration requests put an Email in the inbox. The title and content of the Email are identical except for the username. The title itself doesn't have the username. So we have to ask the registrants to send a special mail manually requesting attention. Some don't see the request, some don't include their username in the request etc. etc. We have to go through the hundreds of requests to find an original one. We miss some. This requires time and attention, and we still get several complaints that people are not being attended.
So ideally, filter databases are the best route.
Another thing that helps a fair bit is regular blocking of spam robot scanners. There are many, many of them and it's like trying to kill flies with your hands. I'll have to check to see of there are bot blockers.
Most suggestions here are going to require that we physically maintain the site ourselves. That's where the problem lies. We, I, just can't do that now.
I've put in several years, but now I'm working on the final retirement project of my life. I'm 66 and this last project should sinch up the future for my family and grandchildren in the future. I have to give it my all, besides it being an opportunity of a lifeftime.
Whatever we do has to be low maintenance on our part. In the end, among 100 or so members, a monthly bill of $200 is not much to pay, to have a place where people can share and learn about POIS in peace.
Thanks for the input, and keep it coming.
That makes sense. But even if there are 200-400 bad requests a day, it seems that it would be relatively easy to find perhaps a prespecified code or keyword in the title of the message. (using ctrl+F or something similar)
The requester would be told ahead of time what to write, so their message can be quickly located out of the hundreds of machine requests. I'm talking about a manually typed personal request from & to another location other than poiscenter.
I know that there will be more elaborate suggestions about active physical maintenance. But, like you said, that would indeed cost money. So my suggestion was to simply keep things as simple as possible, dropping ALL new registration attempts. It would not be perfect, there might be some complaints (so what), but no need for filter databases or extra cost because you've sealed off the entrance to the forum.
By the way, how many actual genuine new members sign up here per week? It seems to me that there actually aren't too many. In fact, I haven't seen even just a single one in a very long time. So that means that blocking new registration attempts might actually go unnoticed by most. Because, who actually would be feel the effects from being stopped from signing up? Not very many it seems.
Not against low maintenance, and I agree with monthly cost, but where we are now (goal reached, research now underway) realistically, we are definitely past the forum "peak", and I personally think it's fine to scale things way, way, way back to the absolute bare operational minimum to dramatically cut costs. I myself have been mostly in a "read only" mode over the summer because I have said or asked mostly everything I needed to over the years.
Disclaimer: This is all just my own personal suggestion, comments and input!
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Hi All,
Just to add some commentary here, I've been helping Daveman by deleting spam posts and spam accounts for several months. That system was a very good one when the spam filter was working -- even when it was only working 50% of the time.
But these days it's like chasing your shadow.
Re: new member registrations, Daveman had set up a very good system and I was also managing that. It was very simple to manage, and a new registrant would be approved in 1-2 days. FYI, the human registration requests stood out very obviously from all the spam bot registration requests.
But the current spam filter is like a mosquito screen that's been torn.
If this forum ultimately needs to move to the Google group platform that was started ~ one year ago, during a similar SMF spam crisis, I think everyone would get used to it quickly. Google groups are very easy to use, have decent spam blockers, and are FREE.
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter
It would be a good idea for many of you to go over to the POIS Google group that had been set up, just to check it out, to get a sense for it. Once your posts start populating it, it would develop a great personality. ??
I'm not pushing for that...please don't think I am. It's just that raising money for a new spam blocker, plus donations to cover monthly maintenance fees on SMF -- could become unwieldy.
Stef
Hi Stef,
I want to thank you for the time you have put in helping Daveman with the spam and registration problems. All the moderators here are so dedicated, and that is why this forum has kept its high supportive and informative value for POIS sufferers. So thanks to you, to Daveman, to Demo, and to all others who contribute to the smooth running and preservation of this forum.
I have a question for you, which is quite technical, but seems to be at the root of the problem.
I have no details about the options and the technical possibilities of the current Simple Machines Forums version we have here, so I will try to put it as simply as possible.
First, in any forum, in order to be able to post any message, it is mandatory to have been accepted as a member. Clearly, those spammers that have succeeded in spamming the forum lately have become members at some point in time.
So, the spams we saw lately, are they from:
1. a bot that have been a silent member for a certain time,having succeeded in the registration process before the second, explanation mail have been asked for in the more elaborate signing up process?
Or
2. is it that some spammers take the time to manually write e-mails that look authentic, then they get accepted, and once accepted, they begin to spam right away ?
Or
3. are there hacking spamming bots which can by-pass completely the registration process, being able to make themselves members without any approval or real registration, and then spam at will ?
If 1 is true, this possibility will fade away, as new illegitimate registrations are now blocked.
I would be very surprised that 2 would be true, and that spammers would take the time to write a legitimate-looking e-mail. If so, the mandatory "Brief reason for wanting to join the forum" should be upgraded to something like "elaborate about your motivations in joining the forum, in a text long enough so it is obvious that you are not a spammer who just want an access to the forum". Becoming a member is useful only if you want to write messages on the board, viewing the messages need no membership. Those who want to become members should be able to write something more elaborate tnan "I think I have POIS and want to ask some questions".....
I am not sure that 3 is possible, and that a bot can hack the forum and register itself without any approbation, and start to post right away. But if so, I would suggest that the forum should just be sealed on a regular basis, and re-opened only for brief periods, in order to register and accept those who have written legitimate explanation mails. I agree with Prancer on that, there is not dozens of legitimate POISers who want to register each week. Moreover, for about 100 legitimate new members, only maybe one will post more than one time on the board, and most will not post even once ( just check the forum stats, in the member list, sort by "posts". All the members who have posted at least 1 message hold in the first 12 pages of 418 pages !!! this means that 97.1% of the registered members of this forum have never posted a single message ) . So there is no rush to accept new members. Even if registration would become possible only once in every 2 weeks or so, that's still acceptable, in my opinion.
You have made the suggestion of moving to the Google groups forum. The problem is that the value of this forum is in part in the wealth of information it contains, and in the fact that this information is easily searchable, is organized in sub-forums,in threads, etc ( the old NSF forum, with everything fused in one single thread, was very far from this ). Moving to another place, even if this one stays available for viewing only, would be disappointing.
Also, I have mentioned I would be willing to help pay for a good spam filter, or what is necessary to reduce the management time needed on this forum. A one shot investment sounds realistic, but just like you, I would not be in favor of a chronic, monthly fee, which is not really the norm for a public internet forum, and would not work in the long term.
There is some hope, anyway - the next version of Simple Machines Forum, SMF 2.1, which is still in beta, is supposed to have "Improved spam defenses, registration will be blocked if a user tries to register too quickly and also inept bots can be tripped up by hidden form variables.", as seen on http://wiki.simplemachines.org/smf/Differences_between_SMF_2.1_and_SMF_2.0 . Would this be enough? I don't know, but it sounds better than the current defenses.
Sorry for this long post. Just my personal opinions on this rather important reflexion we have on this forum future, and the best way to keep it up and running.
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So, the spams we saw lately, are they from:
1. a bot that have been a silent member for a certain time,having succeeded in the registration process before the second, explanation mail have been asked for in the more elaborate signing up process?
...
If 1 is true, this possibility will fade away, as new illegitimate registrations are now blocked.
A follow up to my post of yesterday evening. This morning, three spammers have posted ( liliakh69, harryop3 and joseae1 ) and they have been registered and silent since February 2015 , April 2015 , and May 2015, respectively. So , in these 3 cases, it fits with my hypothesis number 1, that is, bots who have registered in the past, have stayed silent for a while, and then some months later they begin to spam ( I have seen this pattern already on forums I have been moderating).
I do not know if my 2 other hypothesis are correct or not, but for this case that has been proven true, I suggest a selective but massive removal of new members who have registered in the last 18 months if they have not posted a single post since, and show a rather generic nickname, as real members usually come up with more colorful or inventive names . Of course, there are chances that some legitimate members could be unregistered in the process, but
1. they have not posted yet in months, so there was no emergency from their part
2. an advanced notice can be sent or a clear message posted on the forum, so those members will be alerted
3. if they are inadvertently unregistered, all they will have to do is to register again, with the second e-mail proving they are not a future spammer, and if they are aware of what happened, they will choose a more creative forum name, the kind a spammer would not take time to create and obviously, and the kind a spam bot is not able to create ( for example, it is 100% impossible that a bot comes up with a cool nick like Demografx :-) )
And, if you look at the 3 spammers name above, you will easily recognize a pattern ( some weird name with 1 or 2 numbers at the end) No sure method, and maybe a few legitimate members will be unregistered, but for sure, near 100% of silent future spammers will be flushed from the member list, at minimal cost.
After this cleaning, the current, more complicated registration process will prevent the majority of spammers to succeed at becoming a member.
any feedbacks on this suggestion ?
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Quantum,
You've got a very good point. Your suggestion could be really helpful.
There has been one spam post from a spammer registered this month (September), but that's definitely not usually the case.
Let's see what Daveman's thoughts are.
Thank you!
Stef
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Yes, very great insight and observations Quantum. Looks like the spammers first infect the forum, remain quiet, then start spamming later on. And like you mentioned, it seems they have more random names that usually end with a number.
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Daveman wrote 9/8:
I'm not sure we're winning the battle with spammers. We're still having to delete several per day, and some of them are pretty gross!
Several members joined up recently to move to a new version and put in a spam filter. The cost was $240, we put in $300. There was a good filter we had installed a year or two ago before the last upgrade, but the upgrade ate it up. That filter let us ban, delete AND report spammers before they got into any position to post.
I would like to install that same filter again, but it would cost more than the amount we have left ( which is $60 or one hour).
It is a good filter and should help in the short term, but forum maintenance is an ongoing thing, so I suspect that what we really need is around $150 to $200 per month to keep things clean.
Obviously if I could put in the time like I used to be able to do, there would be no cost. There have been some offers to help physically (and free) but for one reason or another, it really comes down to the fact that we need an independant service to keep things clean.
When people aren't paid, the committment isn't the same. There are security issues, etc. etc.
So I'm looking for ideas, perhaps small fundraising efforts to get the relatively small quantity of $150 to $200 per month coming in to help out.
We have an alternate site at google groups, http://tinyurl.com/nscsbfs where we can go if we run in to problems like we had before where the site was down for a short time, and we will probably be going there more completely if we don't get much response to helping out with the maintenance.
Please, feedback.
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(http://i858.photobucket.com/albums/ab143/demografx/1D8533C1-C83C-4017-A866-3D9F034D7CB4.png)
Daveman...PUT ME DOWN FOR $20/MONTH!
demo
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Quantum,
You've got a very good point. Your suggestion could be really helpful.
There has been one spam post from a spammer registered this month (September), but that's definitely not usually the case.
Let's see what Daveman's thoughts are.
Thank you!
Stef
Yes, very great insight and observations Quantum. Looks like the spammers first infect the forum, remain quiet, then start spamming later on. And like you mentioned, it seems they have more random names that usually end with a number.
Thanks for your positive feedback, Stef and Prancer .
I have just came back from work, and I have refined my analysis of the members list data :
Between January 1st and July 13 of this year alone, we had about 11500 new members ! I guess that July 13 is the date when the new registration process has been put in place, because that's the date the frenzy of new registrations have stopped. Before that, there have been about 40 to 60 new members A DAY, for 18 months, which is not very likely for a rare condition like POIS , This spammers invasion has begun around April 2014. Of the 12500 or so members of this forum, it may be possible that only about 1000 are genuine members, and that the remaining 11500 are potential spammers/illegitimate members.
POIS is a rare disease, and furthermore, not all POIS sufferers have found or will find this forum. It would may be normal to have around 5 to 20 new members a month, possibly, but not 675 members a month like in the past 18 months.
Those 11500 fake members are quite easy to recognize, I think, and it wouldn't be that hard for a moderator to recognize and ban them, although it could be a long process, considering their huge number, But there is 2 useful criteria to easily identify the fake members:
1. as I have mentioned, their forum name is usually composed of a first name followed by 3 to 4 random characters string, which can be 3 letters, or 2 letters followed by 2 numbers, or the like ( I can create some for you : Johncl12, Mariankv2, LouisKuo, etc....). there are some variations, but not that much ( like 2 to 3 capital letters followed by a first name).
2. In case of doubt, a look at the profile, in the field “Last Active”, will say “never” or show the same date as the registration date ( meaning this fake member never came back so far to the forum after registration..... until it will start its spamming carreer..... ). Even if he has not posted yet, a real member will have a Last Active date more recent than his registration date. Of course, if a member have already posted (this can be seen in the last column to the right ), his genuine post has already proven his real member status.
I took a rapid look at the 50 pages of members that have last registered, and it seems quite easy to identify the real ones from the spammers - the more creative nicknames just stand out. But they are rare and far between, there is hardly one real member by page of 30 new members.
A filter that would ban all members having “never” in the Last Active field would save a lot of time to the moderators team.
So, I do not know if eliminating those members would take a lot of time from a moderator, but if they stays there, we have potential spamming for the 1000 years ahead ! On the other hand, now that we have a more limiting registration process and that the fake new members invasion is over since July, I believe that, if the forum get rid of the 11500 potential spammers already registered, a monthly fee will not be necessary because there will be a lot, lot less spam messages, if not almost none.
Afterward, it will be easier the recognize the valid membership registration and refine the registration process, and make regular 'pruning” of the member list if needed.
I understand Daveman is very busy, and doesn't have much time to manage the forum at this time, and it is perfectly ok with me that he takes care of his family future. So, in order to help maintaining this forum that I really appreciate, I propose a way to “win the battle over spammers”. I had the time to do so this week, and have some experience as a forum moderator. I think my suggestion would be easy to apply (even if it can be long to ban such a large number of fake members), and I hope Daveman will accept to allow someone of the moderator team to give it a try.
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I'm not sure we're winning the battle with spammers. We're still having to delete several per day, and some of them are pretty gross!
Several members joined up recently to move to a new version and put in a spam filter. The cost was $240, we put in $300. There was a good filter we had installed a year or two ago before the last upgrade, but the upgrade ate it up. That filter let us ban, delete AND report spammers before they got into any position to post.
I would like to install that same filter again, but it would cost more than the amount we have left ( which is $60 or one hour).
It is a good filter and should help in the short term, but forum maintenance is an ongoing thing, so I suspect that what we really need is around $150 to $200 per month to keep things clean.
Obviously if I could put in the time like I used to be able to do, there would be no cost. There have been some offers to help physically (and free) but for one reason or another, it really comes down to the fact that we need an independant service to keep things clean.
When people aren't paid, the committment isn't the same. There are security issues, etc. etc.
So I'm looking for ideas, perhaps small fundraising efforts to get the relatively small quantity of $150 to $200 per month coming in to help out.
We have an alternate site at google groups, http://tinyurl.com/nscsbfs where we can go if we run in to problems like we had before where the site was down for a short time, and we will probably be going there more completely if we don't get much response to helping out with the maintenance.
Please, feedback
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Hi every one
100 poisers 3dollars by head
We can pay every year 36e
Ok for me
i am down with paying. If we move what happens to all the stuff generated here.
Thanks, Cert!
Stuff? I think we can keep it here....and simply copy important stuff at Google Groups, or wherever/if we migrate.
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Please note that registration questions are too easy to crack for bots. These questions contain the answer. Registration questions should not contain answers and should not contain answers when googling them on a first page. Still they should be easy to answer by humans. The questions can offer to solve simple logical tasks for example, that should not at the same time be answered by googling.
Victor
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Please note that registration questions are too easy to crack for bots. These questions contain the answer. Registration questions should not contain answers and should not contain answers when googling them on a first page. Still they should be easy to answer by humans. The questions can offer to solve simple logical tasks for example, that should not at the same time be answered by googling.
Victor
Thanks Victor, great tips. I'll look into it.
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Hi Everyone,
All recent registration requests have been reviewed. There were in excess of 400, dating back ~ two months. Ony one seemed legitimate (i.e. it didn't look like spam). That registration was just approved.
You'll soon be able to welcome your new forum member. :-)
The other process -- deleting what appear to be spam accounts -- has also started. (Don't worry -- none of you is in that group!). This will be an arduous task -- there are loads of questionable "member" accounts that need to be scrutinized. It's not as straight-forward as one might think.
***For anyone reading this post who has recently applied for registration (in the last 4 months) -- if you haven't received an approval email, please send me a PM that includes the username you tried registering with, you personal email address (which will not appear on the forum) and a brief line or two about why you wish to join poiscenter.
Best to all,
Stef
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Hi Everyone,
All recent registration requests have been reviewed. There were in excess of 400, dating back ~ two months. Ony one seemed legitimate (i.e. it didn't look like spam). That registration was just approved.
You'll soon be able to welcome your new forum member. :-)
The other process -- deleting what appear to be spam accounts -- has also started. (Don't worry -- none of you is in that group!). This will be an arduous task -- there are loads of questionable "member" accounts that need to be scrutinized. It's not as straight-forward as one might think.
***For anyone reading this post who has recently applied for registration (in the last 4 months) -- if you haven't received an approval email, please send me a PM that includes the username you tried registering with, you personal email address (which will not appear on the forum) and a brief line or two about why you wish to join poiscenter.
Best to all,
Stef
Thanks to the moderators team for the time they take in order to win the battle over spamming !
https://en.wikipedia.org/wiki/Forum_spam
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Hi everyone and Stef for registering me
Just want to briefly introduce myself. Most of you have probably already read my posts on NSF where I?m known as 4everfogged. I?m 42 and only discovered the POIS forums just over 1 year ago, but have been living with it since as early as the age of 15 or 16. School, studies, relationships, work and all that comes with it always ended up putting me in a difficult position. I?ve always tried to appear to be as normal as possible in front of others as I kind of refuse to think of myself as a cripple. But over the years especially close ones eventually notice the cracks in my life, though almost none understand what?s going on. Suicidal thoughts have also been a very real part of my life. I don?t want to go to much in detail about my past cause I know what it feels like to go rock bottom. I just want to try think moving forward especially since I discovered POIS. I don?t know if it?s going to be possible but still have some life dreams that I wish to fulfil.
Just to recap my POIS and as mentioned on NSF, my biggest breakthrough was to be on a ultra-healthy diet which greatly reduced my mental symptoms + smaller food portions during POIS also help. Although difficult to put a number on this, I still have 15% and sometimes max 30% of difficulty with my head area issues after O though my throat and chest area is usually still very present. When I wake up at night due to pain I usually go urinate then I do some short breathing exercises I might take valerian and curcuma and sometimes 15 min after that also a small portion of sugar free white yogurt also seem to help. Sometimes if I physically don?t have full control (stress, fatigue, diet, etc?) and pass my boundaries with O, I am still vulnerable to go into a temporary trance of depression. One medication I?ve been on, L-Thyroxine, 2 Prof?s have encouraged me to reduce or stop. I also still take daily extra supplements but I think a healthy diet helps me the most.
Another thing I?d like to mention, since my beginnings I?ve probably been in contact with at least 20 or even 30 docs to whom I spoke about POIS and 3 weeks ago I went to see a psychiatrist whom is the 1st I?ve met claiming to know about POIS and spoken/helped other POISer. By the way I believe the cause of POIS is physical therefore not psychological but due to the fact that sex stimulates positive emotions with us it?s leading towards the contrary when post-orgasm. But I also think that the root of POIS is more likely to be andrology related.
And one more thing: thanks to all those who have been heavily involved with everything here.
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(http://schools.springisd.org/images/102-Welcome%20Animation.gif)
less fogged !!!
Demo
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At POISCenter, this is the # of times I've posted here:
(http://i858.photobucket.com/albums/ab143/demografx/85B276B5-1DAC-4633-BD68-EDDB24487C0D.jpg)
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Hi everyone and Stef for registering me
Just want to briefly introduce myself. Most of you have probably already read my posts on NSF where I?m known as 4everfogged. I?m 42 and only discovered the POIS forums just over 1 year ago, but have been living with it since as early as the age of 15 or 16. School, studies, relationships, work and all that comes with it always ended up putting me in a difficult position. I?ve always tried to appear to be as normal as possible in front of others as I kind of refuse to think of myself as a cripple. But over the years especially close ones eventually notice the cracks in my life, though almost none understand what?s going on. Suicidal thoughts have also been a very real part of my life. I don?t want to go to much in detail about my past cause I know what it feels like to go rock bottom. I just want to try think moving forward especially since I discovered POIS. I don?t know if it?s going to be possible but still have some life dreams that I wish to fulfil.
Just to recap my POIS and as mentioned on NSF, my biggest breakthrough was to be on a ultra-healthy diet which greatly reduced my mental symptoms + smaller food portions during POIS also help. Although difficult to put a number on this, I still have 15% and sometimes max 30% of difficulty with my head area issues after O though my throat and chest area is usually still very present. When I wake up at night due to pain I usually go urinate then I do some short breathing exercises I might take valerian and curcuma and sometimes 15 min after that also a small portion of sugar free white yogurt also seem to help. Sometimes if I physically don?t have full control (stress, fatigue, diet, etc?) and pass my boundaries with O, I am still vulnerable to go into a temporary trance of depression. One medication I?ve been on, L-Thyroxine, 2 Prof?s have encouraged me to reduce or stop. I also still take daily extra supplements but I think a healthy diet helps me the most.
Another thing I?d like to mention, since my beginnings I?ve probably been in contact with at least 20 or even 30 docs to whom I spoke about POIS and 3 weeks ago I went to see a psychiatrist whom is the 1st I?ve met claiming to know about POIS and spoken/helped other POISer. By the way I believe the cause of POIS is physical therefore not psychological but due to the fact that sex stimulates positive emotions with us it?s leading towards the contrary when post-orgasm. But I also think that the root of POIS is more likely to be andrology related.
And one more thing: thanks to all those who have been heavily involved with everything here.
Welcome less fogged !
Have read many of your posts at NSF - along with a few others here, this has been a lifetime experience.
Good to share and learn on here always.
Take it easy !
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At POISCenter, this is the # of times I've posted here:
(http://i858.photobucket.com/albums/ab143/demografx/85B276B5-1DAC-4633-BD68-EDDB24487C0D.jpg)
Hi Demografx
I?m only on my 2nd post here. This past week was rather difficult for me to give feedback and get enough online to post. But I say to you RESPECT for all your posts. The contribution you?ve done in getting the POIS forums off the ground is just phenomenal. Things are still a bit sketchy for a lot of us, especially for newbies, we also still have some road to go but don?t know where us POISers would be today if it wasn?t for all your hard input!!! Thank you.
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Many thanks, less fogged, but let's not forget that all my time would not have yielded these great results without the incredible efforts of Daveman and Stef, plus the early NSFers like b_jim, Defsync, John21, and the great contributions of today's POISCenter members -- and Rutgers' Orgasm Lab -- too numerous to enumerate all the wonderful people.
With this collective power, I want to see The POIS Monster crushed, humiliated and begging for mercy! :)
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At POISCenter, this is the # of times I've posted here:
(http://i858.photobucket.com/albums/ab143/demografx/85B276B5-1DAC-4633-BD68-EDDB24487C0D.jpg)
Hi Demografx
I?m only on my 2nd post here. This past week was rather difficult for me to give feedback and get enough online to post. But I say to you RESPECT for all your posts. The contribution you?ve done in getting the POIS forums off the ground is just phenomenal. Things are still a bit sketchy for a lot of us, especially for newbies, we also still have some road to go but don?t know where us POISers would be today if it wasn?t for all your hard input!!! Thank you.
Wonderful post, less_fogged!
You're100% correct. Demo started this all from ground zero and didn't give up. He's got a special gift. :-)
Best wishes,
Stef
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Many thanks, less fogged, but let's not forget that all my time would not have yielded these great results without the incredible efforts of Daveman and Stef, plus the early NSFers like b_jim, defsync, John21, and the great contributions of today's POIScenter members -- and Rutgers' Orgasm Lab -- too numerous to enumerate all the wonderful people.
With this collective power, I want to see The POIS Monster crushed, humiliated and begging for mercy! :)
All true, demo -- there has definitely been a fantastic group effort. It's been pretty miraculous, as I think about it all.
But YOU have been at the helm.
XO
Stef
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Awwwwwwww <blush>
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I'm a bit self conscious of popping on and off the forum so much, so I apologize if I'm repeating someone else's suggestion to combat spam bots. I know a lot of forums require users to prove they're not a robot by typing in the numbers/words that appear on a provided photo. Have we explored this idea? Some forums I'm on require this step in order to register as a user, others require it each time you post.
I hadn't been on the forum in a while and was shocked a couple months back when I went to google to search for it and had to go to the second or third page of search results til I found it. Then, once I entered the site I saw it had been ransacked by spammers. I know this has been a recurring problem and that Daveman and others are doing a great job with the time and resources they have available.
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Many thanks, less fogged, but let's not forget that all my time would not have yielded these great results without the incredible efforts of Daveman and Stef, plus the early NSFers like b_jim, Defsync, John21, and the great contributions of today's POISCenter members -- and Rutgers' Orgasm Lab -- too numerous to enumerate all the wonderful people.
With this collective power, I want to see The POIS Monster crushed, humiliated and begging for mercy! :)
Thank you Demo. Why not a cure for 2016 ?
I had a great improvement in 2014. But nothing new in 2015, so why not a cure for 2016 ?
Big hope !
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Many thanks, less fogged, but let's not forget that all my time would not have yielded these great results without the incredible efforts of Daveman and Stef, plus the early NSFers like b_jim, Defsync, John21, and the great contributions of today's POISCenter members -- and Rutgers' Orgasm Lab -- too numerous to enumerate all the wonderful people.
With this collective power, I want to see The POIS Monster crushed, humiliated and begging for mercy! :)
Thank you Demo. Why not a cure for 2016 ?
I had a great improvement in 2014. But nothing new in 2015, so why not a cure for 2016?
Big hope!
(http://i858.photobucket.com/albums/ab143/demografx/CAFD6C73-1087-4EE1-89CC-C2E392EC1919.png)
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Hi, everyone
I'm new here. I'm 33 years old and just recently realized that the experience I have after ejaculation is not "normal". My symptom is flu-like fever and usually lasts 1-2 days. It goes away faster if I have a good rest, I think. Is there like a FAQ for newcomers here? I'm not sure what to do. Should I see a doctor about this? Would they know what to do? I asked my brother, who is a doctor, and he's never heard of it. I also asked my friend who is a urologist and he also has never heard about it. I'm in Southeast Asia btw.
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Hi, everyone
I'm new here. I'm 33 years old and just recently realized that the experience I have after ejaculation is not "normal". My symptom is flu-like fever and usually lasts 1-2 days. It goes away faster if I have a good rest, I think. Is there like a FAQ for newcomers here? I'm not sure what to do. Should I see a doctor about this? Would they know what to do? I asked my brother, who is a doctor, and he's never heard of it. I also asked my friend who is a urologist and he also has never heard about it. I'm in Southeast Asia btw.
Welcome
mtkmtk!!
Please see the resources at our (http://schools.springisd.org/images/102-Welcome%20Animation.gif) Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Best wishes!!
Demo, Daveman, and Stef
:) :) :)
Your POISCenter Admin/Moderators
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...I also asked my friend who is a urologist and he also has never heard about it...
This was probably my *biggest* Doctor-disappointment: it took me years to muster the courage to ask -- 3 "top" urologists in my big city -- and they all 3 also "never heard about it"!!!
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Hello everyone
I have been following Gcrisp (NSF forum) advice of eating eggs for POIS. I have been eating 2 eggs per day for 9 months and 10 days. My POIS duration reduced fron 5 days to 4 days after eating eggs for 5 months and now it got reduced from 4 days to 3 days after eating eggs for 9 months and 10 days. I am so happy to report this.
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I have been eating 2 eggs per day...
(http://fitnessandhealthadvisor.com/wp-content/uploads/2014/01/eggs2.jpg)
(http://fitnessandhealthadvisor.com/wp-content/uploads/2014/01/eggs2.jpg)
And Bulbo's POIS is down!
(http://i858.photobucket.com/albums/ab143/demografx/CD181889-1AB2-4382-B423-314A91834E5F.jpg)
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I am so happy. I wish i get better
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At POISCenter, this is the # of times I've posted here:
(http://i858.photobucket.com/albums/ab143/demografx/85B276B5-1DAC-4633-BD68-EDDB24487C0D.jpg)
And before Daveman, Stef and I left NSF (Naked Science Forum) to team up and start POISCenter:
(http://i858.photobucket.com/albums/ab143/demografx/67213C56-55B9-43C9-8B8A-959E3C09D2E1.png)
=10,000+ POIS posts!.
Too much free time on my hands!
:)
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(http://i858.photobucket.com/albums/ab143/demografx/51A8F7CB-C27C-4D6C-A881-9722B5D5E205.jpg)
TO ALL
POIS-
MONSTER
TRICK- ======>>
OR-
TREATERS:
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Hello everyone
I have been following Gcrisp (NSF Forum) advice of eating eggs for POIS. I have been eating 2 eggs daily for 11 months. My Pois duration reduced from 5 days to 4 days by 5th month and then it reduced from 4 days to 3 days by 9.5 months. My POIS after nocturnal emission was 14 hours but now it has reduced to 4 hours. But my libido has severly increased.. I am happy to report this.
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Hello everyone
I have been following Gcrisp (NSF Forum) advice of eating eggs for POIS. I have been eating 2 eggs daily for 11 months. My Pois duration reduced from 5 days to 4 days by 5th month and then it reduced from 4 days to 3 days by 9.5 months. My POIS after nocturnal emission was 14 hours but now it has reduced to 4 hours. But my libido has severly increased.. I am happy to report this.
That's awesome! Coincidentally, I've started eating 2 eggs daily as well without giving it much thought. Here's to hoping I get some relief from it.
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Looks good, makes total sense that the eggs strategy can help, here is the nutritional components in eggs...http://www.eggnutritioncenter.org/wp-content/uploads/2012/04/Nutrient-Content-of-1-Large-Egg.pdf
By the way, any one remember this movie, maybe "Cool Hand Luke" from the old and famous movie also had POIS. Remember "no man can eat 50 eggs", in one go that is, unless your name is Paul Newman!
http://youtu.be/sAkzEusQLBw
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Unrelated subject to those above. But related to POIS. Guys listen to me.
I just ran a marathon. 5wks ago I placed 3rd in age group in a half marathon. I've suffered from pois since age 12 and am 29. It took me about 4months training to wk up to the full distance. I have sex with multiple partners every wknd and enjoy them. I must still balance my activity but can be much more liberal with it than I ever imagined. I live me life exactly how I want to and push though the pain to meet goals. I have conditioned my body to take more and be more and more durable; to be healthy and think healthy. After a while I have actually grown stronger and stronger both physically and mentally. But my symptoms have also decreased significantly. It can be done.
I am not cured by a long shot. However. My physical conditioning is so good that I can tolerate and do things most of you likely cannot. Things I would likely never be able to do yrs ago or even one year ago. I was chronically ill from this condition and on a sharp downward spiral. I can now have Sex multiple times in a row; but in moderation.
But get your sleep! Get rest and eat right should go without saying. It is essential.
In the past year I have put on 25lbs. I was underweight and in severe pain a year ago. 160lbs at 6ft2in to 185lbs. Most of this weight is muscle and bone density from constant training and jobs with physical labor. I lost a lover of 8yrs; so now I have a new one. I did it. Doing it. Must continue onward.
Go do it. Go hard and fast. Then when you accomplish your physical goals, wk goals and personal ones; throw a sex party and flaunt your health. Or you can keep it in your bedroom with your significant other and get silly and have fun. Different strokes. But trust me; you can do it. Don't stop. Moderate but push and push and push. It's a fine balance. I'm learning to do this more effectively. It can and will be done.
Also. Find a healthy subject to obsess over like running or diet not pois and obsess! Hyper-focus on health and productivity and action not conjecture and thinking in circles. Make these hyper-focuses actions!
That's all I have right now.
This will not be my last marathon. I will run more and more. I will do whatever I want to in life regardless of this fucking condition. Go do it. Be healthy guys. Live your dreams and push hard. Very hard!
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Unrelated subject to those above. But related to POIS. Guys listen to me.
I just ran a marathon. 5wks ago I placed 3rd in age group in a half marathon. I've suffered from pois since age 12 and am 29. It took me about 4months training to wk up to the full distance. I have sex with multiple partners every wknd and enjoy them. I must still balance my activity but can be much more liberal with it than I ever imagined. I live me life exactly how I want to and push though the pain to meet goals. I have conditioned my body to take more and be more and more durable; to be healthy and think healthy. After a while I have actually grown stronger and stronger both physically and mentally. But my symptoms have also decreased significantly. It can be done.
I am not cured by a long shot. However. My physical conditioning is so good that I can tolerate and do things most of you likely cannot. Things I would likely never be able to do yrs ago or even one year ago. I was chronically ill from this condition and on a sharp downward spiral. I can now have Sex multiple times in a row; but in moderation.
But get your sleep! Get rest and eat right should go without saying. It is essential.
In the past year I have put on 25lbs. I was underweight and in severe pain a year ago. 160lbs at 6ft2in to 185lbs. Most of this weight is muscle and bone density from constant training and jobs with physical labor. I lost a lover of 8yrs; so now I have a new one. I did it. Doing it. Must continue onward.
Go do it. Go hard and fast. Then when you accomplish your physical goals, wk goals and personal ones; throw a sex party and flaunt your health. Or you can keep it in your bedroom with your significant other and get silly and have fun. Different strokes. But trust me; you can do it. Don't stop. Moderate but push and push and push. It's a fine balance. I'm learning to do this more effectively. It can and will be done.
Also. Find a healthy subject to obsess over like running or diet not pois and obsess! Hyper-focus on health and productivity and action not conjecture and thinking in circles. Make these hyper-focuses actions!
That's all I have right now.
This will not be my last marathon. I will run more and more. I will do whatever I want to in life regardless of this fucking condition. Go do it. Be healthy guys. Live your dreams and push hard. Very hard!
Hi Andy. Thanks for sharing. I also think that regular exercise, healthy diet, good rest, stress management, having fun, hanging out with people we love, are all important parts of a good, overall anti-POIS strategy, as much as using supplements,
I am happy for you that your quality of life has been improving. Keep the good momentum. Go Andy Go ! :)
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Thank you, Andy and Quantum!
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Grrreat advice Andy. I like the way you think and agree with everything you said!
I no longer rely on any supplements to feel better (they don't work for me), but instead focus on recharging/re-energizing my brain with sleep, exercise, minimizing stress, having fun, and a little caffeine doesn't hurt either.
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(http://i858.photobucket.com/albums/ab143/demografx/7CAFD407-288F-4404-B09B-41F2B65D85DF.gif)
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(http://i858.photobucket.com/albums/ab143/demografx/7CAFD407-288F-4404-B09B-41F2B65D85DF.gif)
Back to you, demo!!!!
It just wouldn't have been Thanksgiving without a demo graphic. :-)
XO
Stef
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Same to you Stef & demografx! We'll still invite all non-US POISers to the dinner table. So for instance FloppyBanana will get to enjoy some delicious hot tea (PG Tips), and I'll serve b_jim a nice, warm, buttery croissant, and I'll drizzle some fresh maple syrup on Quantum's biscuit or turkey. That way, we'll ALL enjoy dinner! Ha!
Thanks for the invitation, Prancer ! I am looking forward to this event, I love turkey :)
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Same to you Stef & demografx! We'll still invite all non-US POISers to the dinner table. So for instance FloppyBanana will get to enjoy some delicious hot tea (PG Tips (http://i858.photobucket.com/albums/ab143/demografx/63824812-CA58-495D-8905-4D87A3D7248B.jpg)), and I'll serve b_jim a nice, warm, buttery croissant, and I'll drizzle some fresh maple syrup on Quantum's biscuit or turkey. That way, we'll ALL enjoy dinner! Ha!
(http://www.animateit.net/data/media/june2010/avatar_4437.gif)
Good one, Prancer!
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(http://i858.photobucket.com/albums/ab143/demografx/FC2782BD-4CA4-4F54-9B86-25DD639727EF.jpg)
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I can't make croissant very well but I can prepare good "gaufres" (waffles) if you want :)
(http://www.marieclaire.fr/data/photo/mh515_c17/G_001859_dos.jpg)
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Nice waffles, b_jim!
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Yum!! I would F-ing love eating that. Thank you so much b_jim! Maybe for the holidays upcoming.
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RUTGERS POIS STUDY UPDATE
Daveman and I have been in touch with Jacqueline Kraska, Research Programs Manager at NORD, a few times since the end of October about obtaining the Interim Report.
She has been in touch with Dr Komisaruk a number of times about it.
With her permission to post this on our forum, this is Jacqui's most recent reply to me and Daveman [my edits in brackets]:
On Dec 2, 2015, at 10:22 AM, Jacqueline Kraska <jkraska@rarediseases.org> wrote:
Dear [demo and Daveman],
I just got in touch with the PI [Principal Investigator, Dr Komisaruk/Rutgers] who has promised to send me the report by the end of next week. He said the delay was due to juggling multiple deadlines at the end the semester. I will make sure I send you the information as soon as I have it.
Kind regards,
Jacqui
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Jacqui just now followed up with this:
"I have also asked the PI to pay particular attention to the section I can share with you and be as comprehensive as he possibly can. All the best, Jacqui"
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Article: "4 Ways Sex Can Make You Sick"
One way, according to the article, is via "semen allergy", reporting on Dr. Waldinger, who apparently maintains good publicity efforts.
http://www.cheatsheet.com/health-fitness/4-ways-having-sex-can-make-you-sick.html/?a=viewall
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BEST WISHES FOR A
HAPPY
HOLIDAY
FROM DAVEMAN AND
DEMO
(http://i858.photobucket.com/albums/ab143/demografx/4AB96207-710E-4B76-B355-9DC9A7734DE4.gif)
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Wishing everyone here a very happy festive season. I'm proud to stand among you. This article caught my eye. A different illness but some familiar experiences. http://www.theguardian.com/commentisfree/2015/dec/24/lyme-disease-doctors-dismiss-textbook
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Wishing everyone here a very happy festive season. I'm proud to stand among you. This article caught my eye. A different illness but some familiar experiences. http://www.theguardian.com/commentisfree/2015/dec/24/lyme-disease-doctors-dismiss-textbook
Great article, mellivora! :)
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Wishing everyone here a very happy festive season. I'm proud to stand among you. This article caught my eye. A different illness but some familiar experiences. http://www.theguardian.com/commentisfree/2015/dec/24/lyme-disease-doctors-dismiss-textbook
Thank you, Mellivora, for both your wishes and for the link. It is a good reminder to every health practitioner to keep a fresh eye, remembering they do not know everything, and that if they do not see or understand something, that doesn't mean that it does not exist. This reminder is for sure a useful one here, when considering that POIS is a rare and rather unknown syndrome.
I also wish everybody a happy solstice, which, depending of where you are in the world, marks the beginning of winter or of summer, and depending of your cultural affiliation, coincides or not with a major holiday. :)
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BEST WISHES FOR A
HAPPY HOLIDAY
FROM DAVEMAN AND DEMO
(http://i858.photobucket.com/albums/ab143/demografx/4AB96207-710E-4B76-B355-9DC9A7734DE4.gif)
:) Thank you, Demo and Daveman !
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Thank you all for your contributions to this great forum!
I also wish everybody a happy solstice, which, depending of where you are in the world, marks the beginning of winter or of summer, and depending of your cultural affiliation, coincides or not with a major holiday. :)
Very well said, Quantum. I second that :)
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Thank you all for your contributions to this great forum!
I also wish everybody a happy solstice, which, depending of where you are in the world, marks the beginning of winter or of summer, and depending of your cultural affiliation, coincides or not with a major holiday. :)
Very well said, Quantum. I second that :)
I third that :)
-
(http://i858.photobucket.com/albums/ab143/demografx/BBDCB11B-F120-498E-AC9D-9A7984E4E26F.jpg)
-
(http://i858.photobucket.com/albums/ab143/demografx/9E93B44D-3CD6-478E-BC78-B698E966935D.jpg)
T-shirt we can all wear - or put this on our business cards
- when visiting POIS-skeptical, arrogant doctors! :)
-
Fusion Article: "Why some men can’t orgasm during sex"
http://fusion.net/story/239756/delayed-ejaculation-anejaculation-men-who-cant-orgasm/
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3..2..1 Happy New
Year!
Thanks, Prancer! :)
(http://i858.photobucket.com/albums/ab143/demografx/71C65480-404B-4BF7-BD5F-5528DB7A7BDB.gif)
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Our POISCenter.com ranks #3 if we
Google-search for "POIS".
(http://i858.photobucket.com/albums/ab143/demografx/AD1EC08E-BEB5-43A8-9D14-1FBD9720B3FB.png)
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Hello guys, my name is Mardi, I’m 24, I come from Italy.
I have the syntoms of POIS for almost ten years, like a lot of you I went to a lot of doctors, specialists (nefrologs, andrologs...) but nothing was understood. I tried to search also in the web, but... until yesterday I googled only in italian language!
Yesterday, casually, I wrote some of the syntoms in english, and... Here I am.
I discovered just yesterday that what I am feeling after orgasms is a illness, with a name and there are active studies and a forum about it...
So, I just am writing to say thank you to all of you: I realized that I am not crazy, and that this nightmare is not just my imagination, but a real pathology.
I hope that I’ll can give my contribution to the community.
Mardi
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Hello guys, my name is Mardi, I’m 24, I come from Italy.
I have the syntoms of POIS for almost ten years, like a lot of you I went to a lot of doctors, specialists (nefrologs, andrologs...) but nothing was understood. I tried to search also in the web, but... until yesterday I googled only in italian language!
Yesterday, casually, I wrote some of the syntoms in english, and... Here I am.
I discovered just yesterday that what I am feeling after orgasms is a illness, with a name and there are active studies and a forum about it...
So, I just am writing to say thank you to all of you: I realized that I am not crazy, and that this nightmare is not just my imagination, but a real pathology.
I hope that I’ll can give my contribution to the community.
Mardi
Hello Mardi
Welcome and happy for you that you found this forum. I hope all the resources here can help you reduce your symptoms. I noticed on "Orphanet website"that there are a lot of contacts regarding POIS in Italy (Also in Germany). I've wondered if they can be of any help. If one of these places are near you, perhaps they might be worthwhile getting in touch with. I have no idea if any forum member has ever been to one of these places.
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=IT&Expert=279947
http://www.orpha.net/consor/cgi-bin/Clinics_Search_Simple.php?lng=IT&LnkId=20421&Typ=Pat&CnsGen=n&fdp=y&from=rightMenu
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Our POISCenter.com ranks #3 if we
Google-search for "POIS"
Interesting for those that don't know here you can also see the daily views of POIS on Wikipedia
For some reason there were a lot of views yesterday
http://stats.grok.se/en/latest/Postorgasmic_illness_syndrome
-
Hi guys, I am a new poster here, although have been a silent spectator here for over an year. I am 30 years old from the UK and have been having POIS for the last 8 to 10 years. I am typing all this on Day 3 of POIS feeling like crap in my office chair. My POIS seems to be getting worse as years pass by and that?s what is making me crazy to think what lies in future if I am suffering this much at 30 years of age.
I had a recent blood test on Day 2 of POIS which showed very low testosterone, high cholesterol, high Thyroid stimulating hormone and what not. My libido and everything is fine, which is again a problem as I can?t refrain from ejaculation for more than 4 or 5 days. I have felt much better when I have not ejaculated for more than a week which I hae done now and then, but then due to my high libido I am not able to get myself to reduce the frequency.
For your benefit and mine, I hope that there is a cure soon for this dreadful curse. I hope the Rutgers study shows some bright light at the end of the tunnel
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Hi everybody, my first post here as well, 28 years from Spain, hard Pois sufferer since 6 years ago, for me pois is a chain that takes you the half or your life, one week you are a normal person and the next one you lack energy to wake up in the morning, I have visited some doctors here but no reponse. I hope this forum and studies in course give us a solution, i have tried niacine, histamine, taurine methods but nothing new. As most of you pois starts one hour later and get the peak two days later.
Sincerely thank you everybody for the information you share here, this is the only way to get a solution.
-
Our POISCenter.com ranks #3 if we
Google-search for "POIS"
Interesting for those that don't know here you can also see the daily views of POIS on Wikipedia
For some reason there were a lot of views yesterday
http://stats.grok.se/en/latest/Postorgasmic_illness_syndrome
Very interesting.
Thanks for the link!
-
Welcome
Marcusq and joelawerence!!
Please see the resources at our (http://schools.springisd.org/images/102-Welcome%20Animation.gif) Page:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Best wishes!!
-
Hi everybody, my first post here as well, 28 years from Spain, hard Pois sufferer since 6 years ago, for me pois is a chain that takes you the half or your life, one week you are a normal person and the next one you lack energy to wake up in the morning, I have visited some doctors here but no reponse. I hope this forum and studies in course give us a solution, i have tried niacine, histamine, taurine methods but nothing new. As most of you pois starts one hour later and get the peak two days later.
Sincerely thank you everybody for the information you share here, this is the only way to get a solution.
Welcome Marcusq,
What are your other main symptoms, apart from severe fatigue ?
Do you suffer from hypotension (low blood pressure) when in POIS ?
Even if symptoms starts up to an hour after release, did you try take your supplements at least 30 to 20 minutes before E ?
There is no one single supplement that relieve all of POIS sufferers, so you may finally find one that will help you, at least in reducing the severity and/or duration of your POIS. I suggest you try capsules of green tea extract, they are good at giving back energy ( at least for me, and some other members as well). There are some other simple and safe supplements you can try, that are good sources of antioxidants, like curcumin ( from peppered turmeric), rosemary extract, flaxseed oil, or grape seed extract. You can make some testing, and finally find a mix that brings you some relief.
-
Andy what do you mainly contribute your success to? Diet? Exercise? Those pills?
-
Hello guys, my name is Mardi, I’m 24, I come from Italy.
I have the syntoms of POIS for almost ten years, like a lot of you I went to a lot of doctors, specialists (nefrologs, andrologs...) but nothing was understood. I tried to search also in the web, but... until yesterday I googled only in italian language!
Yesterday, casually, I wrote some of the syntoms in english, and... Here I am.
I discovered just yesterday that what I am feeling after orgasms is a illness, with a name and there are active studies and a forum about it...
So, I just am writing to say thank you to all of you: I realized that I am not crazy, and that this nightmare is not just my imagination, but a real pathology.
I hope that I’ll can give my contribution to the community.
Mardi
Hi Mardi.
Welcome
To POISCenter.com !
Please visit our Welcome
Page:
http://tinyurl.com/lwwns6z
-
Welcome Marcusq & joelawerence! It's great to see other sufferers like us finding the forum for the first time. More heads together are better, and with no doubt this year looks super promising for defeating POIS!
-
That's funny demografx! I'm referring to the "Prancer" pic you posted a couple weeks ago.
That car is soo F--ked up lol...kinda like me when I'm in a bad POIS episode. (https://www.youtube.com/watch?v=uFHehn0UOLU) I think warner bros totally ripped my name off (jk lol). Just the other night I saw a commercial for a new midsize SUV called the "GLC". Omg, conspiracy! Next there'll be a vehicle called demografx. lol
-
Next there'll be a vehicle called demografx. lol
(http://i858.photobucket.com/albums/ab143/demografx/1FF7F75A-7C3F-4C51-A7FB-C0E431694361.gif)
The 2016 demografxmobile...see your local dealer @ demografxauto
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Article: "Post-Orgasmic Illness Syndrome: Orgasm Health" in Men's Journal. Possibly posted before, it's from 2014.
Mentions NORD & Dr Komisaruk
"Post-Orgasmic Illness Syndrome
For some, there is a big downside to orgasm. Post-orgasmic illness syndrome (POIS) is a rare disorder where people feel ill after orgasm. Symptoms can include intestinal discomfort, headache, and general malaise. "Just having orgasms makes them feel sick for days after and nobody really knows what the mechanism is," says Komisaruk, who has just secured a grant from the National Organization of Rare Diseases to study this affliction. No one knows how common POIS is, but Komisaruk is currently working with a couple dozen men with the symptoms to shed further light on this disorder."
http://www.mensjournal.com/health-fitness/health/post-orgasmic-illness-syndrome-orgasm-health-20140414#ixzz3xFg35Vnx
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3 (new?) POIS YouTubes-- what do you think?
http://www.youtube.com/watch?v=5l6QLtKCRlg&sns=em
http://www.youtube.com/watch?v=fhSMfbcVF9E&sns=em
http://www.youtube.com/watch?v=WOMShJhgLK4&sns=em
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Demo,
Firstly I think "hats off" to the two gentlemen for baring their souls on their experiences.
The first gadget I think demonstrates how far guys are prepared to go to find a reduction in symptoms and life impacts. Unfortunately, am not qualified to know if there is any validity behind the "gadgets",, but without doubt credible devices that can stimulate good energy and push on belief in recovery (once it isn't false hope), is positive.
Colm
-
Thank you, Colm
-
Begin forwarded message:
From: Barry Komisaruk <brk@psychology.rutgers.edu>
Date: January 20, 2016 at 12:31:24 PM PST
To: demografx
Subject: Re: Vagus nerve
Stephen W. Porges: The Polyvagal Theory.
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941(work)
fax: 973-353-1171
On 1/20/2016 3:27 PM, demografx wrote:
Hi Barry,
Can you kindly recommend a reading source for people (like me!) who are seeing the term, " vagus nerve", for the very first time?
Best
[demo]
-
(http://i1036.photobucket.com/albums/a446/certainly1232000/9C1169C1-8D96-4F96-8E33-7B9CCF1B5603_zpsntsyyn3a.jpg)
Book recommended by Dr Komisaruk/Rutgers
-
YouTube interview with Stephen Porges on Polyvagal Theory:
http://www.youtube.com/watch?v=8tz146HQotY&sns=em
-
YouTube interview with Stephen Porges on Polyvagal Theory:
http://www.youtube.com/watch?v=8tz146HQotY&sns=em
Hi Demo and everyone,
Also, a good summary of the Polyvagal Theory can be found at https://en.wikipedia.org/wiki/Polyvagal_Theory
-
Thanks, Quantum!
-
Extremely interesting video Quantum, thanks for sharing. I like this area of investigation. It potentially links otherwise confusingly diverse symptoms and observations. e.g. how POIS can result in changes in voice (mine used to become quite husky), looser stools, withdrawal from social situations and yet, social situations with people I'm comfortable with can seem to improve at least cognitive symptoms of POIS, at least temporarily. It also can help explain why meditation and/or breathing exercise is reported to help some people here. I'll be looking into this theory some more and I congratulate the people of NORD for singling out Dr Komisaruk. Whether, its the right track or not, its an inspired choice based on what I've read so far.
-
Mel, great to "see" you again! :)
-
Hi Demo,
Thanks for pointing out the importance of the Polyvagal Theory for the understanding of the ongoing POIS research. I think it deserves a thread on its own, so I have started a thread on the Polyvagal Theory here: http://poiscenter.com/forums/index.php?topic=2200 .
Knowing more about the Polyvagal Theory and how it sees the inlfuences of the two different branches of the vagus nerve ( has described by this theory), will be important to have a better understanding of the papers that will come out of the current Rutgers study on POIS.
I will copy there the references that have already been given in this thread about the Polyvagal Theory.
Here is an interesting primer:
(http://www.naturalworldhealing.com/images/polyvagal_graphic.jpg)
Begin forwarded message:
From: Barry Komisaruk <brk@psychology.rutgers.edu>
Date: January 20, 2016 at 12:31:24 PM PST
To: demografx
Subject: Re: Vagus nerve
Stephen W. Porges: The Polyvagal Theory.
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941(work)
fax: 973-353-1171
On 1/20/2016 3:27 PM, demografx wrote:
Hi Barry,
Can you kindly recommend a reading source for people (like me!) who are seeing the term, " vagus nerve", for the very first time?
Best
[demo]
-
Lesson: don't give up!
<demo @ NSF ca. 2012>
"An fMRI of POIS!
I just now contacted Dr Komisaruk and we will hopefully get the full paper.
A couple years back, I tried to enlist the support of Dr Komisaruk and his 2 co-authors of their book, "The Science of Orgasm", sadly, no replies. "
But this went into NORD's database and he was invited to submit his proposal to POISers!
-
I have low vitamin B12 because I eat meat only 2 times in a month. Low B12 has a neurologic effect.
http://m.livescience.com/53675-vitamin-b12-aging-autism-schizophrenia.html?cmpid=514627_20160211_58154076&adbid=10153238114211761&adbpl=fb&adbpr=30478646760
-
Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter
If you ever experience any unforeseen technical difficulties here!
It is our alternate/emergency POISCenter site at Google Groups.
-
Hi Demo,
Sorry for asking this question. You probably get asked 100 times a month. But if you had to guess, when will we know the findings of the study being done at Rutgers? Thanks
Pflug
-
Hi Demo,
Sorry for asking this question. You probably get asked 100 times a month. But if you had to guess, when will we know the findings of the study being done at Rutgers? Thanks
Pflug
"So excited to hear about the Rutgers study! I realize it's all very preliminary, but it's definitely exciting to see some movement. Thanks to the research team, Stef, POIS participants, and NORD for all your work so far! What are next steps in terms of the study? Are there more interim reports coming out? What sort of timeline are we looking at?"
Hi, Hoping (and Everyone),
The Rutgers study is a one-year study. There was a several-month delay in starting it due to the IRB Committee having questions, needing clarifications, etc., so NORD's MAC granted Dr. K. a one-year extension. This is why iit all moved at a snail's pace at the beginning.
(IRB delays are expected, because patient safety is paramount and every step has to be entirely understood and approved. Also, iit's lkely that none of the committee members had ever heard of POIS, so there may have been more questions than usual.)
Based on the paragraph provided by Dr. Komisaruk, it sounds like the study is moving full-steam ahead at this point. It has another six months, and should be completed around April or May 2016. The final report is due within 60 days of completion. So, the next (final) report should be received by NORD in June or July at the latest.
Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable mefical journal. You'll all be able to read it, word for word, once it's published. With luck his paper will be accepted and published quickly.
I hope that was helpful!
Best wishes,
Stef
-
(http://i858.photobucket.com/albums/ab143/demografx/6ABEDF4B-3DB1-4EDD-81BD-4271F0626402_2.png)
From http://www.newark.rutgers.edu/barry-komisaruk
-
Welcome to POISCenter!
(http://schools.springisd.org/images/102-Welcome%20Animation.gif)
Here are some POIS resources which may be helpful to you:
We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:
Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis
More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042
Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos) Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".
Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/) Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!
Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/
The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.
Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g
Abstract links to early POIS Research Studies:
http://www.ncbi.nlm.nih.gov/pubmed/11995603
http://www.ncbi.nlm.nih.gov/pubmed/21241453
http://www.ncbi.nlm.nih.gov/pubmed/21241454
http://www.ncbi.nlm.nih.gov/pubmed/25630453
http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract
Poster Presentation: http://f1000research.com/posters/1758
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
New York Times article,
January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse
To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.
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In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
Good article for those of you whose physicians tell you, "POIS is all in your head," :
http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
It can be very helpful to you when dealing with medical professionals to point this out. Click to see
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)
And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)
The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php. The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.
POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome
For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.
Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!
SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
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Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable medical journal [bold edit -demo]. You'll all be able to read it, word for word, once it's published.
And when it's published, we POISers can take a reprint of the medical journal article into any POIS-skeptical doctor's office and say, "Stop scratching your head and read this!"
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Dr. Komisaruk will undoubtedly write a paper with all the details, and it will be published in a reputable medical journal [bold edit -demo]. You'll all be able to read it, word for word, once it's published.
And when it's published, we POISers can take a reprint of the medical journal article into any POIS-skeptical doctor's office and say, "Stop scratching your head and read this!"
Absolutely demo!! Can't wait to see it!
mood: very optimistic!
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Prancer, your enthusiasm is infectious :)
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Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter
If you ever experience any unforeseen technical difficulties here!
It is our alternate/emergency POISCenter site at Google Groups.
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Welcome to POISCenter!
(http://schools.springisd.org/images/102-Welcome%20Animation.gif)
Here are some POIS resources which may be helpful to you:
We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:
Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis
More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042
Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos) Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".
Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/) Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!
Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/
The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.
Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g
Abstract links to early POIS Research Studies:
http://www.ncbi.nlm.nih.gov/pubmed/11995603
http://www.ncbi.nlm.nih.gov/pubmed/21241453
http://www.ncbi.nlm.nih.gov/pubmed/21241454
http://www.ncbi.nlm.nih.gov/pubmed/25630453
http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract
Poster Presentation: http://f1000research.com/posters/1758
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
New York Times article,
January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse
To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.
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In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
Good article for those of you whose physicians tell you, "POIS is all in your head," :
http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
It can be very helpful to you when dealing with medical professionals to point this out. Click to see
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)
And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)
The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php. The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.
POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome
For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.
Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!
SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
-
(http://i858.photobucket.com/albums/ab143/demografx/37AAE480-E566-4F63-A877-6D953F468609.png)
http://www.mensjournal.com/health-fitness/health/what-exactly-is-an-orgasm-20160301
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DR. KOMISARUK'S BIOGRAPHY
(http://i858.photobucket.com/albums/ab143/demografx/B52C38A9-C27A-496D-9FB8-CE26BCA6D97D.png)
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Cross-posted from "NORD Interim Report for POIS Study"
http://poiscenter.com/forums/index.php?topic=2086.msg18415#msg18415
Professor Komisaruk's 3rd report is due on the 18th of this month. NORD has followed up and asked him to pay particular attention to the public section and inquired of additional recruits since Nightingale and Andy.
They hope to have the report soon!
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(http://i858.photobucket.com/albums/ab143/demografx/BD9A7ECF-258A-4C98-8096-802F77343646.gif)
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Amazed @ how you did that, Prancer!
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THANK YOU DEMO!!
(http://oi67.tinypic.com/ac9746.jpg)
Prancer,
your
(http://i858.photobucket.com/albums/ab143/demografx/9FE6F573-F188-4094-9C84-435AD803D315.jpg)
graphic really rocks hops!
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If we somehow ever lose track of one another, we can always hook up here:
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
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I have re-activated the forum named:
POISCenter
~~ at Delphi Forums ~~
http://m.delphiforums.com/poisadmin
LET'S SEE WHICH FORUM BEST SUITS OUR NEEDS!
(Ours here crashed before, so...who knows? Delphi has
been around & stable since the '80's.)
So...let's try some parallel posting!
POIS-free wishes to everyone!!
demo
(http://i858.photobucket.com/albums/ab143/demografx/F8BE03B9-22C5-435D-A93E-6DBD137DD45E.png)
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Eagerly awaiting :)
Maybe with enough of us doing the same, our positive energy will expedite this :)
It's Sunday evening, keep sending positive energy for speedy NORD release of Rutgers' Interim Report #3!
:)
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It's Sunday evening, keep sending positive energy for speedy NORD release of Rutgers' Interim Report #3!
:)
It's Sunday evening Monday morning, keep sending positive energy for speedy NORD release of Rutgers' Interim Report #3!
:)
-
(http://i858.photobucket.com/albums/ab143/demografx/DFA0038B-56D1-4014-A246-3BEC0E22E270.gif)
...and I don't really look like Luigi of Mario Bros! :)
demo
(http://i858.photobucket.com/albums/ab143/demografx/AD0F070B-8936-4132-91C0-8E4F70C36F6F.jpg)
...nor Jerry Lee Lewis!
(http://i858.photobucket.com/albums/ab143/demografx/B6E2CED8-97D5-4095-9ECC-82503A9FC54E.jpg)
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Non-technical "Popular Psychology" 2007 article about Stephen Porges and the Vagus Nerve:
https://www.psychologytoday.com/articles/200706/mind-your-body-higher-road-relaxation
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Hi demografx
Just wanted to say thanks for all your input once more.
No matter how desperate people are.I can understand the frustration for some in wanting to move forward asap. Who would'nt be if you living with POIS. Even though not everybody always realises how much effort you've put in (including others) all this since your beginnigs. You and your team have only accumulated POIS patients coming on and off these forums whether they believe in it or not...no matter what....we all know it can all only raise the awarness of our plea to the medical world. Even though the plea part certainly has already been accomplished. And all that thanks to people like you.
Current medical practises regarding research, recognition, etc. can only improve even if it still feels like its going at a snails pace.
Every single person who has POIS and follows the forum should also register as it all helps in raising the awareness, even if they only come on here with a basic introduction of themselves.
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Hi demografx
Just wanted to say thanks for all your input once more.
No matter how desperate people are.I can understand the frustration for some in wanting to move forward asap. Who would'nt be if you living with POIS. Even though not everybody always realises how much effort you've put in (including others) all this since your beginnigs. You and your team have only accumulated POIS patients coming on and off these forums whether they believe in it or not...no matter what....we all know it can all only raise the awarness of our plea to the medical world. Even though the plea part certainly has already been accomplished. And all that thanks to people like you.
Current medical practises regarding research, recognition, etc. can only improve even if it still feels like its going at a snails pace.
Every single person who has POIS and follows the forum should also register as it all helps in raising the awareness, even if they only come on here with a basic introduction of themselves.
Thank you, less_fogged!
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Think we should pass on this holiday(s)? ;D
demo
(http://i858.photobucket.com/albums/ab143/demografx/DC628A36-E4D5-464F-9CC2-1580F36909D3.jpg)
-
...Current medical practises regarding research, recognition, etc. can only improve even if it still feels like its going at a snails pace...
Thanks, less_fogged, your words above helped me become a little less impatient.
So...I hope others will feel the same way.
It's not easy...waiting!
:)
-
(http://i858.photobucket.com/albums/ab143/demografx/ED5EDD10-F1C3-4674-A21F-A0872869FDAE.jpg)
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POISer Daily News
April 20, 2016
(http://i858.photobucket.com/albums/ab143/demografx/04721A32-178A-443C-B1BA-BBBDDA39797D_1.jpg)
Oh well, maybe we'll let b_jim classify this POISer with hundreds of other cases he's reviewed!
;D
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:)
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"how viagra would fit in with my niacin treatment. The two are not very compatible. The short story is that the change has had it's ups and downs.
The ups were that when it worked it was very little short of 100%. The downs, were several really, when it didn't work, it made it worse, and the viagra/niacin combo is very hard on the system.
During some of the down times, my POIS symptoms changed. I could see an underlying POIS feel, but with some symptoms stronger, others lighter, and almost like some new. But I began to recognize that the seeming new ones were just grand exaggerations of existing ones.
Recently I have been having increasing gastric problems, and I can see where the gastric problems feed-back to unbalance other systems, even affecting brain-fog and loss of concentration.
Today is an interesting example. I accidently had "unprotected sex" yesterday (No niacin, viagra or anything, first time in about 3 yrs). And my POIS is just as it used to be. But with all the recent gastric problems, there's a distinct reminiscence that had recently been exaggerated in my heightened gastric problems.
So I am increasingly becoming convinced that, although the vagus may or may not be causal, it's certainly central. I am certain that something will come of all of this.
[/quote]
Hi Daveman
Thank you for all your wonderful work on this forum.
I am a newbie to this forum and have already spent a lot of time sifting through posts and messages.
Even after spending hours reading through the messages; Unfortunately, I am still not clear of how to use Niacin and even more so Niacin supplemented by Viagra
A) which one first
B) can you eat after the flush and before the deed?
C) I read one of your more recent posts that you only use 50mg of Niacin, that is to how many mg of viagra.
D) may I suggest we start a NEW topic on best practices various dosage, interactions with other supplements.
ps: I tried niacin 100mg after 4-5 hours fast had no flush then used viagra 50 mg after the act benadryl and 400mg nurofen. Had to sleep over 10 hours to feel better and was still a little brain fogged
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gogetter, welcome to our forum!
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Hi gogetter.
Sorry for not being around much... Ufff very busy.
I'll start by saying that my case may not be like that of many others. Unfortunately that's a problem with "POIS treatments". None really seem to work for everyone in the same way.
As far as the Niacin, Viagra combination, it's true, it's a combination that has to be managed very carefully. Both components tend to lower blood.pressure. Both are vaso-dilators. At one point, when I was experimenting with doseages, I had a rather unpleasant experience with the combination.
But I almost HAVE to use the combination. I am 67 y/o and basically need viagra to have sex. And I don't want to have sex without niacin. But I've found an almost certain combination (for myself).
I take 25mg of viagra, and wait about 40 minutes until I start to feel activity "down there", then I take my 50mg of Niacin - NO MORE. then wait about 10 minutes more. All this first thing in the morning before breakfast. That is 8 hrs fasting. I rarely get a rush, until maybe afterwards. Parts of the next 12 hrs can be a bit shakey, but much less than a normal POIS session by far. Usually if needed an Ibuprofen helps with those. I have tried it at night after varios times of fasting. A minimum of 4 is required. Niacin when taken with viagra seems to lower the restriction on fasting, but I have found that the times I've done it in the morning are almost 100% sure to work, whereas those in the evening and without good fasting are much less uncertain. The results can drop to near 50% in some cases. Althugh I have had 100% effectivity at times using it in the evening.
I noticed what you said about how in the next days some strange remnents of POIS are present, but nothing serious. Like mild shooting pains in certain nerves.... But generally I go forgetting I have POIS and it certainly doesn't affect concentration or incentivation.
So the doseage doen't need to be high. My bloodpressure is fine and I absolutely couldn't even contemplate having sex without these components.
Everything must be taken before the act. There is very little benefit to taking it after. It seems to prepare the system for taking out the garbage (whatever crap is produced by the orgasm process that gives us such woe).
I have come close a couple of times to inadvertent orgasm without protection. God forbid!! And thank goodnes I haven't yet had to face that situation.
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Daveman
I appreciate you're busy therefore your response is even more valuable.
I'm so surprised you take all that in the morning...
Are you saying you no longer required to have the Flush within 2 hours before the deed?
Secondly, taking the 25mg viagra in the morning, will make it different to get out of the house in the morning, won't it?
Can you take in the evening another 25-50mg to assure good performance?
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Thanks, Daveman!
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Actually it's not really all that much.
25mg is really very little Viagra. It's just enough to give me one orgasm. And I experience very little of the adverse effects, like pressure in the head and that kind of swolen feeling in the face.
Also 50 mg of niacin is not very much.
Sometimes it's hard to get enthiused at that hour, especially for the wife who doesn't take anything to raise the libido. I do miss the sponteneity of sex when you want it. Also Sex in the evening after a cocktail or two or a nice romantic dinner is "hotter". But alas, we have POIS!
I'm sure I would have to take more in the evening and with lesser fasting. But I've found that even so the results are less consistent, and in the evening you have to increase everything, such that the combination can have negative effects.
But no. I usually don't get a flush. A few times, with the effort of the deed, the flush has come during or after the sex.
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Actually it's not really all that much.
I'm sure I would have to take more in the evening and with lesser fasting. But I've found that even so the results are less consistent, and in the evening you have to increase everything, such that the combination can have negative effects.
But no. I usually don't get a flush. A few times, with the effort of the deed, the flush has come during or after the sex.
Thanks again Daveman for your detailed answer was very much appreciated.
If I follow your model and take 25mg Viagra and 50 mg Niacin in the morning; that, you say works well. What I am not getting is this for the morning after? or the morning before? I can't see how taking Viagra in the morning would help you for that night 13-15 hours later?
Also at night would you suggest doubling say 50mg Viagra and 100mg Niacin? does it have to be in this order or can it be reversed being that if one has to fast for the Niacin to work, you'd obviously first want to get the Niacin and flush over and out of the way then tuck in to dinner with a helping of the blue pill.
My supplement supplier told me if I am taking Niacin I should also supplement it by taking a B-Complex or VM2000 by solgar (which also happens to contain 100mg of Niacin among a whole list of other things) I took today those two for the first time, actually B-12 drops and a VM2000 then in the evening I took 100mg Niacin and got a proper flush which was kind of cool ( actually it's hot :-) )
Following that, was waiting over an hour for it to subside to eat something, maybe I don't have to wait once the flush has appeared? though because this is all brand new to me and don't know enough about it.
Can I still take Viagra after all this?
I am sorry if I am being stupid here; Though, if like you say in one of your posts that this combination is hard on the system I want to know I am getting it right.
Then there is the question should I add on a Benadryl and ibuprofen after the act??
My wife says I will make a noise like a rattle by taking all those pills.
Kind Regards
GoGetter
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Actually it's not really all that much.
I'm sure I would have to take more in the evening and with lesser fasting. But I've found that even so the results are less consistent, and in the evening you have to increase everything, such that the combination can have negative effects.
But no. I usually don't get a flush. A few times, with the effort of the deed, the flush has come during or after the sex.
Thanks again Daveman for your detailed answer was very much appreciated.
If I follow your model and take 25mg Viagra and 50 mg Niacin in the morning; that, you say works well. What I am not getting is this for the morning after? or the morning before? I can't see how taking Viagra in the morning would help you for that night 13-15 hours later?
Also at night would you suggest doubling say 50mg Viagra and 100mg Niacin? does it have to be in this order or can it be reversed being that if one has to fast for the Niacin to work, you'd obviously first want to get the Niacin and flush over and out of the way then tuck in to dinner with a helping of the blue pill.
My supplement supplier told me if I am taking Niacin I should also supplement it by taking a B-Complex or VM2000 by solgar (which also happens to contain 100mg of Niacin among a whole list of other things) I took today those two for the first time, actually B-12 drops and a VM2000 then in the evening I took 100mg Niacin and got a proper flush which was kind of cool ( actually it's hot :-) )
Following that, was waiting over an hour for it to subside to eat something, maybe I don't have to wait once the flush has appeared? though because this is all brand new to me and don't know enough about it.
Can I still take Viagra after all this?
I am sorry if I am being stupid here; Though, if like you say in one of your posts that this combination is hard on the system I want to know I am getting it right.
Then there is the question should I add on a Benadryl and ibuprofen after the act??
My wife says I will make a noise like a rattle by taking all those pills.
Kind Regards
GoGetter
Niacin/viagra only protects for about 2 hours from when it is take. My feeling is that it does something to our system that protects us for that short time window only.
So you can't take it in the mrnig to protect you later at night. It's only in the system for 1 to 2 hours.
If yyou want to have sex in the evening you have to take it in the evening no more than an hour or so before the deed.
Unfortunately it doesn't seem to work as well in the evening.
My sense is that it has something to do with the liver.... even one drink (alcohol) within the 6 to 8 hour fasting time can set the effect back considerably.
I think that later in the day, one has eaten, worked, one is tired, your body is busy cleaning up all the garbage. So it's already overloaded.
I don't know the explaination, but morning after eaight hours sleep and Viaga niacin 45 min to an hour before sex works great (for me).
As I mentioned, I prefer the night, but I have to take more ( a fair bit more) and the chances that it will work are lower, even with that.
Taking either of those two afterwards doesn't do anything.
BTW. I tried with viatamin complex and it made my POIS worse. I've also tried with JUST the B-complex and no additional naicin or viagra and that didn't make it worse nor better.
There are a goup of us here for which the niacin works well and many for whom it does notihng. Go figure.
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Mark Zuckerberg/Facebook wants to cure all diseases this century.
http://www.cnbc.com/2016/04/27/zuckerberg-i-want-to-cure-all-diseases-this-century.html
POIS, too?
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(http://i858.photobucket.com/albums/ab143/demografx/E1AD7C27-C53B-43D6-92BB-85F1A43D93DE.gif)
UC Berkeley also does fMRI studies of the brain, e.g.,
https://news.berkeley.edu/2016/04/27/brain-thesaurus/
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Hi all,
Just thinking of some ideas that we could use to start new research programs to run in parallel with the current research. Here what I'm thinking in:
1- POISCENTER could cooperate with some medical staff to start a project on Kickstarter (https://www.kickstarter.com/)
2- We start sending a well written message on behalf of POISCENTER to some business billionaire (like Mark Zuckerberg) who we think could support a research program
What do you think guys? you might see this silly but i really i almost tried everything with no success and don't know what to do.
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Hi Jimmy,
For nearly 10 years now, I've been chasing my tail trying to get research done.
Nord/Rutgers is the best I came up with...after a string of failures to get SOMEONE (anyone) to listen & do some POIS research.
In spite of my failures prior to NORD -- I support all avenues to advance our cause.
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Hi all,
Just thinking of some ideas that we could use to start new research programs to run in parallel with the current research. Here what I'm thinking in:
1- POISCENTER could cooperate with some medical staff to start a project on Kickstarter (https://www.kickstarter.com/)
2- We start sending a well written message on behalf of POISCENTER to some business billionaire (like Mark Zuckerberg) who we think could support a research program
What do you think guys? you might see this silly but i really i almost tried everything with no success and don't know what to do.
I don't know about the kickstarter, we probably have to go viral to get any traction. I am interested in sending letters though.
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I am interested in sending letters...
Great, CP2!
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The absolute worst POIS symptom (torture, really!).
In my humble opinion, POIS is a...
(http://i858.photobucket.com/albums/ab143/demografx/663F5322-90A7-4CD9-9B2A-C4F78F061067.jpg)
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Folks, that time of year comes again when we need to muster funds for the hosting service. It is $250/yr. So we need 5 people (4 plus me) to put $50 each, or some such combination. More people, less per person.
From Daveman: "It has to be paid in one payment, so the cleanest is each donor deposits to my PayPal account and I pay the hosting service. So let's see first if we can muster up enough between us, and then once we have the smount required I'll PM the account info to those generous donors. And pay the bill."
We can't stay open without the contributions.
Just post "I'm in" and Daveman will PM you the details.
THANK YOU IN ADVANCE!
demo
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Let's all say...THANK YOU...for contributing to our
hosting fees!
COLM
Quantum
certainlypois2
vik1379
joelawerence
(http://i858.photobucket.com/albums/ab143/demografx/7A1C17C2-AFD5-4BD3-A0E2-BA90E9C005E4.gif)
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(http://i858.photobucket.com/albums/ab143/demografx/B3585BD7-88F7-42F6-80F0-098411A006AA_1.jpeg)
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POIS News article:
"Health: Why some men fall sick after reaching sexual climax"
http://m.mid-day.com/articles/health-why-some-men-fall-sick-after-reaching-sexual-climax/17407177
Good POISer pic in this article!
(http://i858.photobucket.com/albums/ab143/demografx/48025143-F4E5-421D-B31E-C0E116DEF812.jpg)
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mid•day (please see above article posted) also posted an article on "Sexual Headaches" and included the following POIS statement at the end of their report:
(http://i858.photobucket.com/albums/ab143/demografx/250BD75C-E239-4D74-9619-2CD3A7372FDE.png)
We're getting good publicity!
demo
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I like the fact that it says cognitive dysfunction, brain-fog is to vague. Cognitive dysfunction is clear and gets right to the point.
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(http://i858.photobucket.com/albums/ab143/demografx/250BD75C-E239-4D74-9619-2CD3A7372FDE.png)
I like the fact that it says cognitive dysfunction, brain-fog is to vague. Cognitive dysfunction is clear and gets right to the point.
Interesting perspective, CP2. We've all gotten so used to that ol' "brain-fog" description.
[Highlighted "cognitive dysfunction" above = mod edit]
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The DSM Criteria of Sexual Dysfunction: Need for a Change
by Richard Balon
http://www.tandfonline.com/doi/abs/10.1080/00926230701866067
This article includes a POIS reference.
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The above 2009 article review is about DSM issues written about in the "Journal of Sex & Marital Therapy", which also was the first publication to print the very first article (2002) about POIS / by Dr. Marcel Waldinger.
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The above 2009 article review is about DSM issues written about in the "Journal of Sex & Marital Therapy", which also was the first publication to print the very first article (2002) about POIS / by Dr. Marcel Waldinger.
Thank for the reference, Demo. I was not able, though, to read the full article, just the abstract.
The current edition of the DSM is the DSM-5, published in 2013. I don't think anything significant has been added in it regarding POIS.
I have found this blog discussing the changes that have been made in the DSM-5 regarding sexual dysfunctions: http://www.skepticink.com/gps/2013/11/08/changes-to-the-sexual-dysfunction-disorders-in-dsm-5/ , but no mention of POIS there.
Any other comment or article I tried to read needed a subscription.
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While searching for comments about the changes in DSM-5, I have found that POIS is mentioned, along with some referenced basic information, in the wikipedia page about sexual dysfunctions, which is great:
https://en.wikipedia.org/wiki/Sexual_dysfunction#Post-orgasmic_diseases
:)
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Great find, Quantum!
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interesting article on athletes using electrical pulses to enhance training.
http://www.businessinsider.com/olympic-athletes-use-halo-neuroprimer-2016-7
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Thanks, Nico!
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While searching for comments about the changes in DSM-5, I have found that POIS is mentioned, along with some referenced basic information, in the wikipedia page about sexual dysfunctions, which is great:
https://en.wikipedia.org/wiki/Sexual_dysfunction#Post-orgasmic_diseases
:)
Thanks again, Quantum, I passed along your post above to Dr Komisaruk.
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Cross posted from "Propranolol (Betablocker) reduced the intensity of my POIS by atleast 75%" thread.
This post about beta-blockers tends to confirm that POIS is not a unique syndrome, but a family of syndrome having the same trigger (ejaculation), and that there will not be one, unique treatment for all POIS cases.
Excellent point.
It took me a long time reading many POISer experiences (e.g., in "b_jim" 's POIS cases) before that became clear to me.
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Cross-posted from Hydrogen Peroxide thread:
...let's A L L -- please! -- refrain from publicly (or privately) disparaging or belittling another forum member. Let's leave that to competing politicians running for office!
Even if someone (anyone) is breaking the rules here, let's give them the human respect they deserve. Even if it ultimately means banning them for severe breach of rules, they still don't deserve our personal attacks.
Oldtimers: let's all take the HIGHER ground :)
As the rules state, this is a very successful forum because it was designed as a
F R I E N D L Y forum, one where people can feel
S A F E to express themselves. I've seen people "freeze" and stop posting for days whenever there are people-conflicts and
ad-hominem-style NAME CALLING. It creates a very negative and forum-detrimental experience.
People wonder when they see an interpersonal attack: "Am I next??"
And it's totally unnecessary. We can solve problems without attacks related to interpersonal anger and hostility.
I deeply appreciate your cooperation.
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Welcome to POISCenter!
(http://i858.photobucket.com/albums/ab143/demografx/26428DE4-51B5-4140-8864-90EA19F3BE96.gif)
Here are some POIS resources which may be helpful to you:
We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:
Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis
More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042
Click here to see Mat780's excellent YouTube POIS Channel. (http://www.youtube.com/user/POISchannel/videos) Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".
Click here to see The POIS reddit post. (http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/) Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!
Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php
Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/
The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.
Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
"Girlwind" has created an excellent POIS Video:
http://www.youtube.com/watch?v=UWBxAUC9k1g
Abstract links to early POIS Research Studies:
http://www.ncbi.nlm.nih.gov/pubmed/11995603
http://www.ncbi.nlm.nih.gov/pubmed/21241453
http://www.ncbi.nlm.nih.gov/pubmed/21241454
http://www.ncbi.nlm.nih.gov/pubmed/25630453
http://onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.01707.x/abstract
Poster Presentation: http://f1000research.com/posters/1758
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1
New York Times article,
January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse
To send a Private Message, click on messages link at the very top of this page. Then click "Send Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.
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In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN YOUR HEAD'! "
Good article for those of you whose physicians tell you, "POIS is all in your head," :
http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/
(http://i858.photobucket.com/albums/ab143/demografx/f0cc96c8.jpg)(http://i858.photobucket.com/albums/ab143/demografx/ba4b3bc8.jpg)
It can be very helpful to you when dealing with medical professionals to point this out. Click to see
POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research: (http://rarediseases.info.nih.gov/GARD/Condition/10809/Postorgasmic_illness_syndrome.aspx)
And in Europe: Orphanet now lists POIS on their website. - Click here. (http://www.orpha.net/consor/cgi-bin/Disease_Search.php?lng=EN&data_id=20421&Disease_Disease_Search_diseaseGroup=pois&Disease_Disease_Search_diseaseType=Pat&Disease%28s%29/group%20of%20diseases=Postorgasmic-illness-syndrome--POIS-&title=Postorgasmic-illness-syndrome--POIS-&search=Disease_Search_Simple)
The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php. The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.
POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome
For over 5 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus our pages have been read nearly 2,000,000 times. Not bad for a rare malady.
Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!
SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE
We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over 10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.
In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/
for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/
and 740 results came up for "nocturnal emission" within the Forum.
be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")
Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
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(http://i858.photobucket.com/albums/ab143/demografx/809300EC-6525-42FC-B26E-F97526397F96.gif)
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Thanks to Daveman and hosting team to get us back up & running!
Software glitch.
Sorry for the inconvenience,
Demo
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Thanks to Daveman and hosting team to get us back up & running!
Software glitch.
Sorry for the inconvenience,
Demo
Thanks to Daveman and Demo !
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Thanks to Daveman and hosting team to get us back up & running!
Software glitch.
Sorry for the inconvenience,
Demo
Thanks to Daveman and Demo !
Thank you, Quantum!
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Yahoo! general audience publication article about POIS from 2015:
"The Crazy Reason This Man Never Wants To Orgasm"
By Amy Rushlow
https://www.yahoo.com/beauty/the-crazy-reason-this-man-never-wants-to-orgasm-110191674787.html
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(http://i858.photobucket.com/albums/ab143/demografx/89D7E123-1A21-49AF-A415-E0EDB3F9F3A4.jpg)
I'm afraid to ask!......
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More...
(http://i858.photobucket.com/albums/ab143/demografx/2D2F73B1-04E0-429E-B916-4486D8DCD11B.jpg)
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(http://i858.photobucket.com/albums/ab143/demografx/945DB904-415A-4342-A3CB-C6679C960243.jpg)
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lol, i read some more on it the moment you posted because that is crazy. A study showed pigs have on average have long ass orgams, average about 5 minutes. The 31 mins comes one pig in the same study.
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lol, i read some more on it the moment you posted because that is crazy. A study showed pigs have on average have long ass orgams, average about 5 minutes. The 31 mins comes one pig in the same study.
Boars might have the longest orgasms (I also asked an expert privately)
https://www.reddit.com/r/askscience/comments/hwtou/how_long_does_a_pigs_orgasm_last_which_animal_has/
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Hi All,
It seems that there is new publication on POIS ( actually not sure if this been posted here or not ). Here is the link:
http://tau.amegroups.com/article/view/11107/11778
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Hi All,
It seems that there is new publication on POIS ( actually not sure if this been posted here or not ). Here is the link:
http://tau.amegroups.com/article/view/11107/11778
THANK YOU, Jimmy!
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Hi All,
It seems that there is new publication on POIS ( actually not sure if this been posted here or not ). Here is the link:
http://tau.amegroups.com/article/view/11107/11778
Thanks a lot for the link, jimmy! It has not been posted here yet. And it is interesting!
It is a very good review article by Dr Waldinger, in which he sums up all of his ideas and previous work about POIS. the 5 criterias defining the clinical presentation of POIS, the 7 clusters of symptoms he has defined, the hyposensitization treatment of POIS with autologous semen, discussion on the antigen, and so on.
But what surprises me is that he also add some new ideas, without citing any previous work, and seems to give some hints about his current work !
As an example, the article says "In 2015 Waldinger reported the occurrence of POIS before and after sterilisation in three men. This phenomenon means that the AG is most likely not bound to the spermatozoa but associated with the seminal fluid." and "Indirect clinical evidence suggests that the Ag triggering the POIS systemic reaction is not bound to spermatozoa but to seminal fluid produced by prostatic tissue "" This is not linked to any references, so this may come from a speech he has given or else, it is not specified. Take note that we came to a similar conclusions on the forum, that is, that the antigen is not linked to the semen/spermatozoa but likely to fluids from prostate or seminal glands or Cowper's glands ( see this thread: http://poiscenter.com/forums/index.php?topic=1555.0 ). Sure, our forum's threads have no value in the scientific world, but now, this mention in Waldinger's review article gives this hypothesis a worldwide scientific credibility.
Elsewhere in the article, it is written that ""To find the Ag in the seminal plasma that causes the auto-immune reaction is of utmost importance for a better understanding of and finding an effective treatment of POIS.", Ag= antigen . I feel this means that current work of Dr Waldinger on POIS is about searching for the possible antigen in prostate fluid. We heard about an ongoing search of Dr Waldinger. I suppose this is the purpose of this current study. I also feel that this review article is a way to summarize what is known up to now about POIS and set the stage for the results that may come next year from his current study.
It is also written in this review article that " The physical and cognitive symptoms of POIS are produced by some specific cytokines that are released by the immunological reaction occurring during ejaculation." and " POIS is not associated with increased total serum IgE concentrations. On the contrary, there are indications that POIS is triggered by specific cytokines that are released by an auto-immune reaction to the man’s seminal fluid.". The part saying that IgE are normal in POIS sufferers has been published in his 2004 paper. But I am not aware that Dr Waldinger has ever written before about specific cytokines being the possible mediators of the hypersensitivity reaction. He does not define further which cytokines he refers to, but by digging reference 2 and reference 3, at the end of the article, you can get some idea of what he has in mind.
From reference 2 in the article ( Vial T, Descotes J. Clinical toxicity of cytokines used as haemopoietic growth factors. Drug Saf 1995;13:371-406. [Crossref] [PubMed] ), you read: " Flu-like and constitutional symptoms, sometimes dose-limiting, have been reported with IL-1, IL-3, IL-4 and IL-6, while M-CSF was occasionally associated with such adverse effects. More specific adverse events, also frequently considered as dose-limiting toxicities, include hypotension with IL-1, severe headache or skin rash with IL-3, and nasal congestion and gastroduodenal lesions with IL-4. Severe capillary leak syndrome has been reported only with IL-4." Many of these effects have been mentioned as POIS symptoms, and considering the complexity of the immune system, it may be considered that the general idea is valid, and may explain many different symptoms not listed here.
I think you may have already noticed that I am very enthusiastic about the auto-immune hypothesis of Dr Waldinger, and that I have myself written a lot about my opinion on the role of pro-inflamatory cytokines as a cause of certain clusters of POIS symptoms, so these affirmations by Dr Waldinger about the role of cytokines in the physiopathology of POIS are just further reinforces my opinion.
I will copy this in the research section, I feel the link to this great paper may get lost in this huge thread.
Thanks again jimmy!
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I will copy this in the research section, I feel the link to this great paper may get lost in this huge thread.
This huge thread was designed for "random thoughts/ideas/comments", but also as a "jumping-off place" to start a new thread when anyone desires.
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While searching for comments about the changes in DSM-5, I have found that POIS is mentioned, along with some referenced basic information, in the wikipedia page about sexual dysfunctions, which is great:
https://en.wikipedia.org/wiki/Sexual_dysfunction#Post-orgasmic_diseases
:)
Re-posting this above to remind me to put this on our Welcome Page! :)
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I wonder where Wikipedia picked up on muscular pain being the predominant POIS symptom...
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...but it's great to see POIS listed in multiple Wikipedia topics.
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...[Quantum, you make] understanding medical particulars easier for non-medical people :)
(http://i858.photobucket.com/albums/ab143/demografx/4818D5B1-9D9E-491A-AC17-832E089DCAB6.gif) :)
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...[Quantum, you make] understanding medical particulars easier for non-medical people :)
(http://i858.photobucket.com/albums/ab143/demografx/4818D5B1-9D9E-491A-AC17-832E089DCAB6.gif) :)
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Oldie But Goodie:
"Brain Activation during Human Male Ejaculation"
Gert Holstege et al
http://psych.stanford.edu/~knutson/ans/holstege03.pdf
(http://i858.photobucket.com/albums/ab143/demografx/15F07FA6-5F63-4AC9-B600-FAF4482359A3.jpg)
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Yahoo! general audience publication article about POIS from 2015:
"The Crazy Reason This Man Never Wants To Orgasm"
By Amy Rushlow
https://www.yahoo.com/beauty/the-crazy-reason-this-man-never-wants-to-orgasm-110191674787.html
I just saw this. A pretty good report. Our forum is even mentioned. She has Dr. Waldinger as prime reference, but I guess up to now, he is just about the only who has done a published study.
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Thanks, Daveman.
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http://tinyurl.com/h4qmy5w
Beautiful chart Quantum...
Yes, it's an amazing chart!
JUST A SAMPLER...
(http://i858.photobucket.com/albums/ab143/demografx/EA17DB13-8FA0-46C1-B9A1-B51339F5D487.png)
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Quantum I saw a mention of things that make POIS worse in your thread, so I want to contribute. I'll put it here, not sure if or where it should go in the other thread.
As most know, I'm a niacin type, but probably beyond that I'm a Viagra type (both are vaso-dilators. The combo, very carefully taken, all but eliminates my POIS. Often completely prevents it.
But A few things I found that make it worse:
Any ingestion, food, alcohol, anything but water, closer than 8 hours from orgasm worsen POIS logrithmically as the fasting time declines.
Since Niacin is a vitamin, during the time that vitamins were all the rage here I tried multi-vitamins daily and my POIS got worse, at least canceling out the Niacin
Smoking MMJ before worsens my POIS considerably. (if it's taken after though it helps quite a bit - like several hours after) go figure.
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Thanks a lot., Daveman ! I will transfer these information in my POIS types chart. I felt the "POIS worsened by" section of the chart would useful to develop, because when something worsens POIS, it clearly acts on a process or something in the body that is POIS-related, so knowing about all these different triggers will eventually lead to something meaningful.
I think this process is already bringing some elements into light, like the timing of eating vs the timing of ejaculation. You bring this point, and lately, it was also talked about regarding NE ( at least two members talked about higher probabilities for a NE when eating late in evening). With time, this detail may reveal something important about POIS.
For now, i will gather all that data in the chart, so we can get a general overview, and hoepfully, we will start to see links and patterns.
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(http://i858.photobucket.com/albums/ab143/demografx/B0B5408E-7F65-498F-9CFB-683BF7941D42.jpg)(http://i858.photobucket.com/albums/ab143/demografx/D51F729B-A265-41AA-B6D0-EDE773D2C6EF.png)
THE OFFICIAL 2016 MEDICAL
PROFESSION'S REACTION
TO POIS :)
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:D :D
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XD is this really the reaction you got ?
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MirkoThiel0, it's just a tongue-in-cheek joke.
Most POISers experience misery at the hands of most doctors -- doctors who are simply clueless about POIS :)
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(http://i858.photobucket.com/albums/ab143/demografx/19BEE479-2CE6-4344-9F98-795EE0D1C4F6.jpg)
"What? POIS??? Huh?"
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(http://i858.photobucket.com/albums/ab143/demografx/2F43E4E2-AE64-4EC3-AD32-72F51F205B51.png)
http://www.deccanchronicle.com/lifestyle/sex-and-relationship/111016/this-condition-can-make-orgasms-the-worst-experience-for-men.html
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When Dr Komisaruk's POIS study is finally published, I'm sure we'll have a flurry/flood of articles like the above!
More good stuff that you can show your doctor (who is prolly confused about what's wrong with you!)
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Hello everyone, how are you? I see that you continue working very hard on this forum, demografx. Everyone should thank you for your continuous effort.
Quantum, have you already finished your "POIS type" chart? It would be an amazing resource, that's for sure!
Well, I am here again. I check this forum and the nakedscientistforum from time to time, and also try to maintain a constant relationship with some POIS sufferers. I had actually the opportunity to meet one of our chilean forum members in Chile, but we both missed the chance to meet Daveman there. Unfortunately, I had to go back to my home country sooner than I expected, and re-arrange my original schedule. I don't rule out to see them in the future and organize a proper meeting!!
Just a quick update. I got the feeling that my POIS is changing somehow. It's hard for me to get the brain fog again, but I have been getting more anxiety in exchange. The other symptoms don't seem to go away (irritability, clumsy, diminished social skills, etc). The good news is that I get rid of all of them if I use niacine before O., as you know.
In this regard, I have been trying to limit this niacin use, since I got a mild form of psoriasis (considering my family's background, that was to be expected)... and I have a strong suspicion that is related to niacin/POIS. The problem has not gotten worse, though, and I feel that is not a major issue, but I should keep an eye on it.
Best Regards,
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Hi Observer,
Thanks for your positive comment about my POIS types chart. In order to add information to it, I need input from members.
I try to bring to light what would be characteristic of each types, but I would need more members sharing their information for each group ( If I have only one member in a type of POIS, it is hard to draw any conclusion).
It looks like your POIS is becoming more similar to mine. I never had any brain fog or other cognitive problems, but a truck load of anxiety and other emotional problems, like irritability, mood swings, and the like. That is why I came with my hypothesis on the kynurenine pathways enhancement in the brain, by immune upregulation. I have proposed that those who have cognitive problems are suffering from kynurenic acid toxicity, and those having emotional problems are suffering from quinolinic acid toxicity, both substances being produced by a hacking of the tryptophan pathways toward kynurenine, but taking a different path depending of one's metabolic specifics. Rosemary extract is good for me, and I think it is beneficial because it blocks an enzyme called IDO that leads to quinolinic acid production. If my hypothesis is right, rosamary extract and other IDO inhibitors should be good for those with lots of emotional symptoms.
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Welcome back, Observer!
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Welcome back, Observer!
Thanks demografx!
It's very interesting what you said Quantum. You know, I was so overwhelmed by cognitive symptoms before, that I didn't have time to think about the other emotional issues that flare up with POIS. I should definitely try this Rosemary extract to see if it works, as I have somehow limited my niacin dosage.
I would share the results with you. Are you using a particular brand?
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Hi Observer,
Personally, I use rosemary essential oil ( brand Aromaforce, from A.Vogel), 2 to 3 drops in a glass of water, stirring well before drinking. But rosemary essential oil have a camphor-like taste, so it may be not acceptable to everybody. But I get good results with it and the taste is ok for me. If it was not, I would use rosemary extract in capsuled powder ( like this: http://www.vitacost.com/solaray-rosemary-leaf-extract-275-mg-45-vegetarian-capsules ), but I find the essential oil more efficient, the brand I use is made from the whole plant, so there may be more in it than just rosmarinic acid ( the IDO inhibitor) that is helpful for me.
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Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter
If you ever experience any unforeseen technical difficulties here!
It is our alternate/emergency POISCenter site at Google Groups.
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Hi Observer,[edit-demo] for those who don't know, check Oberver''s starring role in CBS' Austrailia documentary on POIS! See Welcome Page~~[end edit]
Personally, I use rosemary essential oil ( brand Aromaforce, form A.Vogel), 2 to 3 drops in a glass of water, stirring well before drinking. But rosemary essential oil have a camphor-like taste, so it may be not acceptable to everybody. But I get good results with it and the taste is ok for me. If it was not, I would use rosemary extract in capsuled powder ( like this: http://www.vitacost.com/solaray-rosemary-leaf-extract-275-mg-45-vegetarian-capsules ), but I find the essential oil more efficient, the brand I use is made from the whole plant, so there may be more in it than just rosmarinic acid ( the IDO inhibitor) that is helpful for me.
Thanks very much, Quantum. I would definitely give it a try. I will probably start trying the powder brand to see if I notice some improvement in case I happen to be in POIS.
Best Regards.
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Welcome back, Observer!
Thanks demografx!
It's very interesting what you said Quantum. You know, I was so overwhelmed by cognitive symptoms before, that I didn't have time to think about the other emotional issues that flare up with POIS. I should definitely try this Rosemary extract to see if it works, as I have somehow limited my niacin dosage.
I would share the results with you. Are you using a particular brand?
I'm not attempting anything else, Observer, my TRT regimen is STILL a week to week struggle to find the right combination. After all these years, I'm still working on it!!!
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(http://i858.photobucket.com/albums/ab143/demografx/13ADE4FB-B969-4AC2-8822-5FBD42CF0155.png)
Questionable article IMO about a doctor treating a woman with "POIS". His "undisclosed treatment" claims to treat her POIS, but must be applied every time she has sex.
http://www.nation.co.ke/lifestyle/saturday/Elusive-ecstasy/1216-3424912-13lnqvd/
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(http://i858.photobucket.com/albums/ab143/demografx/13ADE4FB-B969-4AC2-8822-5FBD42CF0155.png)
Questionable article IMO about a doctor treating a woman with "POIS". His "undisclosed treatment" claims to treat her POIS, but must be applied every time she has sex.
http://www.nation.co.ke/lifestyle/saturday/Elusive-ecstasy/1216-3424912-13lnqvd/
Thanks for the link, Demo.
This Dr Osur seems to be a specialist ( sexologist) in Kenya. He sure knows a lot more than the average physician about POIS, which in itself is interesting.
I have managed to find an e-mail for him, and wrote him about his POIS article, asking him what treatment he has prescribed, and inviting him to take a look at our poiscenter forum. I will let you know about any answer I receive.
He is clear about the fact that what he has prescribed is only bringing relief, and is not a cure, and have to be taken each time. But I would like to know what he have prescribed, anyway.
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nice think Quantum,
i hope we get an interesting answer.
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Welcome back, Observer!
Thanks demografx!
It's very interesting what you said Quantum. You know, I was so overwhelmed by cognitive symptoms before, that I didn't have time to think about the other emotional issues that flare up with POIS. I should definitely try this Rosemary extract to see if it works, as I have somehow limited my niacin dosage.
I would share the results with you. Are you using a particular brand?
I'm not attempting anything else, Observer, my TRT regimen is STILL a week to week struggle to find the right combination. After all these years, I'm still working on it!!!
Hello again demografx. I was interested in that particular Rosemary brand that Quantum is using.
I had the opportunity to meet another POIS member this weekend, and we talked also about your TRT treatment. I find these encounters to be highly rewarding, and so far I have met four POISers during this time! It's always interesting to see how other people can relate to your life memories and completely understand you.
SoldatRas (he's a new forum member, I'm using his nickname... he lives in the same city where I am living right now, amazing coincidence) told me that he was just starting his experience with niacin, and that he had experienced a 50% relief. He will be doing more trial tests with a slighlty higher dose during the coming days, to see if he makes some improvement.
We talked about some issues related to cortisol (the stress-triggered hormone), and he thinks (also I do) that is one of the keys to control and reduce the symptoms. It's definitely worth considering, if we take into account the relationship between POIS <-> Anxiety/stress (POIS can induce anxiety/anxiety can worsen POIS).
After reading the following link about this hormone, I found out that many advices are not uncommon to us and have been talked here before. You can find it here: http://teeccino.com/building_optimal_health/148/Six-Tips-To-Reduce-The-Stress-Hormone,-Cortisol.html
I also believe this part, which I found in another website, is really interesting, since I can say that I have experienced it before:
Internist Kogan, on the other hand, believes the physical damages of increased technology use could be severe. She says that prolonged use can overstimulate the nervous system and increase production of cortisol, the so-called stress hormone.
“It’s the fight-or-flight response,” explains Kogan. “When you’re using these technologies, your cortisol will be pumping through the roof. And you don’t want higher levels of cortisol,” which increases your risk of experiencing anxiety, depression, insomnia, high blood pressure and diabetes.
She advises that you reduce your technology use if possible, but warns against putting your job in jeopardy. If you need to remain plugged in, she suggests making a special effort to take time out of the day to relax by taking yoga, practicing meditation or drinking valerian tea at night.
Because technology assails the nervous system, more sleep will help it heal, says Kogan. Ironically, nighttime technology use is also linked to sleep issues, so she recommends you turn off all media at least two hours before bed.<i/>
http://www.forbes.com/2010/06/29/technology-computers-health-stress-forbes-woman-well-being-screen-time.html
Some food for thought, definitely.
BR everyone,
-
Hi everyone. I have received an answer from Dr Osur to the e-mail I have sent to him just yesterday. Here is his answer:
Dear Quantum,
Thank you for your mail. I am among the few doctors in Africa that have taken an interest in sexual health so that is why I am familiar with POIS.
Because the etiology of POIS is not clear, what we do now is to treat symptoms. Either Bupropion or Tramadol because of their dopaminergic effect do help although not all individuals may respond the same way. Have you tried them out?
JO
I have sent him a reply summarizing the reports found on the forum from those who have tried one of these two therapeutic alternatives ( I have not tried them myself). Results have been mixed with bupropion. Far less reports for tramadol, mostly positive, but not all.
Since he seems to be in favor of the role of dopamine in POIS pathophysiology, I asked him how he came to this view.
I also have thanked him for his interest and knowledge about POIS.
It's great to see that there is at least one more doctor in the world that is aware of POIS and has even some relief options to offer ! :)
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Great going, Quantum! How fast!
Hi again, Observer!
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I just emailed Dr Komisaruk about Quantum's communication with Dr Osur.
Dr Osur wrote about a female POISer and I think that Dr K has done most of his orgasm research so far on women.
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Also emailing it to Allison @ NORD.
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(http://i858.photobucket.com/albums/ab143/demografx/8BAF59A8-58E0-4F28-A50E-DD1D9C96BD78.png)
https://rarediseases.info.nih.gov/diseases/10809/postorgasmic-illness-syndrome
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Great, Demo. Poiscenter is listed in the "Organizations" tab.
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Thanks, Quantum.
BTW, Stef deserves full credit for getting us listed at NIH!
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But I never heard of "Post Orgasmic Sick Syndrome" before this.
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(http://i858.photobucket.com/albums/ab143/demografx/CDBF8975-6E24-42E2-9AE1-5112527DB610.png)
http://www.mensjournal.com/health-fitness/articles/are-you-suffering-from-post-orgasmic-illness-syndrome-w448239
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(http://i858.photobucket.com/albums/ab143/demografx/CDBF8975-6E24-42E2-9AE1-5112527DB610.png)
http://www.mensjournal.com/health-fitness/articles/are-you-suffering-from-post-orgasmic-illness-syndrome-w448239
This freelancer may know Steven Blum, he has also written for Vice magazine, like Mr.Blum. Good exposure for POIS, we will never have too much of it.
It would have been better still if he had mentioned poiscenter in his article, though.
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I couldn't find the date when it was published. But it's great to see POIS in such a mainstream publication!
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I couldn't find the date when it was published. But it's great to see POIS in such a mainstream publication!
It is quite recent, because it cites the content of Dr Waldinger review article of 2016-07, him abandoning desensitization, and stopping any reference to POIS as an allergy, and now describing POIS as "a systemic auto-immune reaction expressing itself in multiple physical and mental problems". So this article has been out somewhere between August and November 2016.
The author seems to have had access to an interview with Waldinger after the review article was out, because he quotes him saying those things in his own words, not in the article's phrasing. Anyway, these comments confirm what I have understood from his review article, and have shared here at http://poiscenter.com/forums/index.php?topic=2346.msg19538#msg19538 ( up on this thread you will also find the link to Dr Waldinger's July 2016 review article on POIS ).
There seems to be another snippet from this unknown interview when the article says, referring to desens, " Waldinger once tried to treat POIS (in two of the 45 Dutch patients suffering from the condition he’d identified) using a method designed to reduce allergy symptoms — which he credits with causing the POIS-as-allergy confusion. " ( my emphasis) This sounds like the author have talked directly to Dr Waldinger, and that Dr Waldinger has somehow admitted that he is responsible for the inappropriate and limiting use of the word "allergy" when referring to POIS, and that it should have been described from the start as a complex immune reaction, or a auto-immune overreaction. By using desens to treat POIS, a method used to treat strictly allergic reactions, he have caused the confusion. As I have already wrote, auto-immune diseases are not treated with desensitization, so the change in his view on POIS have called for a change in therapeutic strategy.
So now that he clearly sees POIS as a auto-immune reaction, he must be searching for the antigen, the substance that causes the immune reaction, and eventually, the main markers that go up at the start of this overreaction. If you can identify the first pro-inflammatory immune messengers to go wild, you will try to stop them at the very start, and then prevent the immune fire to spread everywhere in the body. Auto-immune diseases manifest are flaring disorders, and in the case of POIS, you will have a flare each time you ejaculate. A flare is more than just an allergic reaction, because it can go on long after the exposition to the allergenic substance is over, and new symptoms appear long after the start of the attack. If you are allergic to cats, and you react to the presence of a cat, you will leave, go home, take an antihistamine, and the symptoms will slowly subside - no way you're going to be bed-ridden for a week and develop all sorts of systemic symptoms in the coming days - this type of complications is what happens with an auto-immune flare up, and that sounds a lot like what POIS is.
Let's hope Dr Waldinger finds the antigen and a few immune markers as well in his current study.
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Quantum, do you think that the auto-immune theory is compatible with my effective personal choice of TRT treatment?
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Quantum, do you think that the auto-immune theory is compatible with my effective personal choice of TRT treatment?
Yes, absolutely, because "testosterone deficiency has been linked with autoimmune disease and an increase in inflammatory markers, such as C-reactive protein (CRP), tumor necrosis factor, and interleukin-6 (IL-6). " - see https://www.ncbi.nlm.nih.gov/pubmed/27325124
A characteristic of auto-immune is that immune markers are higher than normal, meaning the immune system is too active, and so active that it starts to make "mistakes" on the choice of its target and react on antigen that are normal "self" antigen of your own body. Normally, the immune system react only to non-self antigens from invading virus or bacteria, or to modified and abnormal self-antigens like when there is a cancerous mutation in one of your own cells.
So, if you have low testosterone and you raise testosterone back to normal levels through TRT, your pro-inflammatory cytokines markers like those mentioned above ( CRP, TNF-alpha, IL-6,...) will go down. I think that this is what is happening with your TRT treatment. Did you ever have those immune markers tested, before and after TRT ?
But there are other reasons than low testosterone causing higher than normal immune markers, so a POIS sufferer with already normal testosterone level will not be relieved by TRT - you have to find what is raising these pro-inflammatory markers, in each, specific case. That's part of the complexity of autoimmune diseases - and of POIS.
Auto-immune response comes from T-cells, not B-cells ( 2 different types of immune cells). It is interesting to note that testosterone will lower T-cells much more than B-cells ( https://www.ncbi.nlm.nih.gov/pubmed/27465811 , see in the "Discussion section"). It's in line with TRT being beneficial for the control of autoimmune disorders.
TRT is a relatively non-toxic way to lower autoimmunity. Many drugs, called immunosuppressants, used for the treatment of autoimmune diseases are far more toxic than that. Oral corticosteroids, like prednisone or dexamethasone, are often used in order to control flares in autoimmune diseases, because they lower the immunity, and are a form of immunosuppressants ( I recently read on the NSF forum a case of POIS relief with dexamethasone, as a matter of fact).
There are many unknowns about autoimmune diseases, but much research is done in this field today, so we will likely benefit from this.
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Fascinating! I'm cross posting @ Testosterone thread.
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Does anyone else get POIS from just sex, without orgasm? I've recently came across study that you've got here (Dr Komisaruk's) that says about POIS symptoms appearing even without orgasm.
I think I recently had that with my GF, she'd have orgasm but I wouldn't even be close (as I was during break), and after sex I had flu eyes etc., the next day the fatigue and in the evening another sex, again without orgasm and again I'd become mentally and physically tired. What the actual f...?
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Does anyone else get POIS from just sex, without orgasm? I've recently came across study that you've got here (Dr Komisaruk's) that says about POIS symptoms appearing even without orgasm.
I think I recently had that with my GF, she'd have orgasm but I wouldn't even be close (as I was during break), and after sex I had flu eyes etc., the next day the fatigue and in the evening another sex, again without orgasm and again I'd become mentally and physically tired. What the actual f...?
Some members got POIS symptoms just from arousal, and some don't ( luckily, i don't). For those like you who do have symptoms, it may be linked to pre-cum fluid. I remember a member sharing he has some symptoms just to look at an attractive girl.
I suppose that when it happens, you have less severe symptoms and it lasts less long that after O ?
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Quantum, do you think that the auto-immune theory is compatible with my effective personal choice of TRT treatment?
Quantum said yes. Now I am guessing that the vagus nerve & auto-immune would intersect at some point...
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Quantum, yes, less severe and shorter. Thanks to coming to this forum I've began questioning physical cause of my POIS and I am leaning towards that it's psychological and physical at the same time - I seem to have some gut inflammation. I'll work on both layers simultaneously and will be cured.
I seem to have some issue with women's attractiveness after I've had a bad trip on a research chemical psychedelic 2 years ago and that might be connected. It gives me pain to notice my girlfriend's attractiveness and that I am aroused. Therefore there could be some emotional issue underlying. This is also caused by POIS (or is POIS caused by the issue? That's the very same thing!), because I feel like I cannot have a release to my desire without feeling like shit afterwards. Regardless, I'm gonna keep working on it with my psychotherapist.
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Quantum, do you think that the auto-immune theory is compatible with my effective personal choice of TRT treatment?
Quantum said yes. Now I am guessing that the vagus nerve & auto-immune would intersect at some point...
Well, it is only my opinion, Demo, but I think this point where it all links is systemic inflammatory response, which is inititated by the autoimmune reaction. The "smart" vagus nerve response, like Dr Komisaruk calls it, lowers the inflammatory response on a systemic level. All those POIS symptoms seems to be linked to a systemic inflammatory response, so preventing, controlling and lowering a systemic inflammatory response will help relieve POIS.
The immune system is so complex, there are many ways to trigger inflammation, even stressful thoughts. All these many factors that can contribute to inflammation are additive. Even if there is probably one common antigen in the prostatic fluid or seminal gland that really kick start the POIS immune overreaction, all other contributing factors can aggravate the ongoing immune response. For example, many POISers have noted that eating carbs will worsen their symptoms - these unhealthy foods will worsen an already ongoing inflammatory response.
I hope there will be studies that will measure markers of inflammation before and during POIS, and show what markers are distinctive for a POIS attack. Then it would be more than a hypothesis.
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Quantum, yes, less severe and shorter. Thanks to coming to this forum I've began questioning physical cause of my POIS and I am leaning towards that it's psychological and physical at the same time - I seem to have some gut inflammation. I'll work on both layers simultaneously and will be cured.
I seem to have some issue with women's attractiveness after I've had a bad trip on a research chemical psychedelic 2 years ago and that might be connected. It gives me pain to notice my girlfriend's attractiveness and that I am aroused. Therefore there could be some emotional issue underlying. This is also caused by POIS (or is POIS caused by the issue? That's the very same thing!), because I feel like I cannot have a release to my desire without feeling like shit afterwards. Regardless, I'm gonna keep working on it with my psychotherapist.
Hi Limitbreaker,
I also think that management of negative emotions, be they conscious or unconscious, is important as well. As I said in my post just above, thoughts generating stress lead to inflammation in the body, so that's not good for POIS. Like mentioned in my method, psychotherapy, yoga, meditation, are all part of my anti-POIS method. By attacking POIS on all fronts, it can only help.
-
When an Orgasm Can Destroy Your Life
For men with the rare disorder Post-Orgasmic Illness Syndrome, orgasms can lead to days of physical and psychological misery
(http://i858.photobucket.com/albums/ab143/demografx/56965623-47A6-4C0D-804A-7939489E2423.jpg)
The writer interviewed forum POISers and did his homework on POIS studies.
On Nov 10, 2016, at 11:34 AM, Steven Blum wrote:
Ah they changed their site! It's here:
https://melmagazine.com/these-guys-will-do-anything-to-avoid-coming-279fc4eb1a8b?source=linkShare-898c3474bb43-1478806423
Glad to hear people like it. :)
On Thursday, November 10, 2016, demo wrote:
Hi Steven,
The link to your POIS article is not working.
Recent review @ forum "Best article ever" [from CertainlyPOIS2]
Regards,
demo
-
Hi all Members,
I am a 47 years old man with good health except in POIS period.
I discovered POISCenter by google 4 months ago. It was a great surprise and relief despite everything.
Thanks to all those who has contributed to this forum and new people joining us in future (I hope it will be very short).
I had some conviction that the erection was behind my excessive fatigue when I was 22 years old. However, I never could believe that. Especially when I asked doctors about relation between fatigue and Orgasm, and non one has paid attention to my talk.
Since this date, I frequently went to Otorhinolaryngology Doctors because of the throat irritation, which was the most visible POIS symptom. In addition, I visit Gastroenterologist Doctors… and did many blood analyses.
After have married, POIS symptoms becomes more serious because of multiple Orgasm on the same week. I then have some respiration problems that Doctor explain by humid climate allergy. So I took for one year or more, a corticoid drugs (Becotide).
After marriage, I become more and more convinced that orgasm is behind my illness and not any other disease that I have been looking for.
My POIS symptoms are physical and mental. In cold weather, physical symptoms are more serious. Sometimes I am obliged to lie down in bed for two consecutive days.
Generally, I feel POIS Symptoms on the next day of Orgasm, or the same day if E is in the morning.
Here is a list of some of POIS Symptoms (not all of them) : Eyes burning, Fatigue, Brain Fog or/and headache, poor concentration, cranial skin tension , sweating, digestion problem, joins pain, Fever, flu-like, sore throat, skin pain. The back pain is stuck to me all the time, which I used to explain by stress.
Also, Incoherent speech and memory problems, Anxiety, Demotivation… You know of course the rest of symptoms...
Now I am in the first phase of trying treatment suggested by POISCenter member.
I feel that fenugreek and garlic has some improvement in my relief. I will update this paragraph shortly when I am sure about it.
All those POIS symptoms nearly disappears after one week of “peace”, no orgasm.
Thank you to have patience to read my broken English. It’s my second foreign language after French.
Below some treatments, I used to have to relieve my symptoms. The most certain is to wait the calm after the POIS “Storm”.
Fatigue --> Sleep as much as possible after Orgasm. Avoid late night Orgasm or morning Orgasm. Try to have a maximum sexual sensation before orgasm.
Sore throat and digestion problems --> Cactus honey, one tablespoon at night.
Brain Fog --> have a rest as much as possible, avoid coffee with sugar
Memory --> Write note each time I remember something I have to do. Keep things, I frequently need or use, in the same place, especially car keys. :)
Difficulty pronunciation of letters using tongue! Like R --> Cactus Honey.
Incoherent speech --> Keep quiet in meeting! Alternatively, prepare my words carefully before I engage any conversation. Write emails and correct them many times. Never send them immediately.
Vertigo --> “Toupet Maneuver”, this is very rare, it happened to me just three times in the last five years. It was in a week when I had multiple orgasms in two consecutive days.
When I am in a stress-free psychic state, usually on vacation outside city or country, the POIS symptoms are quite reduced to the point that I ask myself, is it POIS in relation to the climate of the city where I live! It is certain from my long experience; POIS symptoms are less severe in cities with dry climate.
-
When an Orgasm Can Destroy Your Life
For men with the rare disorder Post-Orgasmic Illness Syndrome, orgasms can lead to days of physical and psychological misery
(http://i858.photobucket.com/albums/ab143/demografx/56965623-47A6-4C0D-804A-7939489E2423.jpg)
The writer interviewed forum POISers and did his homework on POIS studies.
On Nov 10, 2016, at 11:34 AM, Steven Blum wrote:
Ah they changed their site! It's here:
https://melmagazine.com/these-guys-will-do-anything-to-avoid-coming-279fc4eb1a8b?source=linkShare-898c3474bb43-1478806423
Glad to hear people like it. :)
On Thursday, November 10, 2016, demo wrote:
Hi Steven,
The link to your POIS article is not working.
Recent review @ forum "Best article ever" [from CertainlyPOIS2]
Regards,
demo
Thanks for making us aware of the new link, Demo !
-
Hi all Members,
I am a 47 years old man with good health except in POIS period.
I discovered POISCenter by google 4 months ago. It was a great surprise and relief despite everything.
Thanks to all those who has contributed to this forum and new people joining us in future (I hope it will be very short).
I had some conviction that the erection was behind my excessive fatigue when I was 22 years old. However, I never could believe that. Especially when I asked doctors about relation between fatigue and Orgasm, and non one has paid attention to my talk.
Since this date, I frequently went to Otorhinolaryngology Doctors because of the throat irritation, which was the most visible POIS symptom. In addition, I visit Gastroenterologist Doctors… and did many blood analyses.
After have married, POIS symptoms becomes more serious because of multiple Orgasm on the same week. I then have some respiration problems that Doctor explain by humid climate allergy. So I took for one year or more, a corticoid drugs (Becotide).
After marriage, I become more and more convinced that orgasm is behind my illness and not any other disease that I have been looking for.
My POIS symptoms are physical and mental. In cold weather, physical symptoms are more serious. Sometimes I am obliged to lie down in bed for two consecutive days.
Generally, I feel POIS Symptoms on the next day of Orgasm, or the same day if E is in the morning.
Here is a list of some of POIS Symptoms (not all of them) : Eyes burning, Fatigue, Brain Fog or/and headache, poor concentration, cranial skin tension , sweating, digestion problem, joins pain, Fever, flu-like, sore throat, skin pain. The back pain is stuck to me all the time, which I used to explain by stress.
Also, Incoherent speech and memory problems, Anxiety, Demotivation… You know of course the rest of symptoms...
Now I am in the first phase of trying treatment suggested by POISCenter member.
I feel that fenugreek and garlic has some improvement in my relief. I will update this paragraph shortly when I am sure about it.
All those POIS symptoms nearly disappears after one week of “peace”, no orgasm.
Thank you to have patience to read my broken English. It’s my second foreign language after French.
Below some treatments, I used to have to relieve my symptoms. The most certain is to wait the calm after the POIS “Storm”.
Fatigue --> Sleep as much as possible after Orgasm. Avoid late night Orgasm or morning Orgasm. Try to have a maximum sexual sensation before orgasm.
Sore throat and digestion problems --> Cactus honey, one tablespoon at night.
Brain Fog --> have a rest as much as possible, avoid coffee with sugar
Memory --> Write note each time I remember something I have to do. Keep things, I frequently need or use, in the same place, especially car keys. :)
Difficulty pronunciation of letters using tongue! Like R --> Cactus Honey.
Incoherent speech --> Keep quiet in meeting! Alternatively, prepare my words carefully before I engage any conversation. Write emails and correct them many times. Never send them immediately.
Vertigo --> “Toupet Maneuver”, this is very rare, it happened to me just three times in the last five years. It was in a week when I had multiple orgasms in two consecutive days.
When I am in a stress-free psychic state, usually on vacation outside city or country, the POIS symptoms are quite reduced to the point that I ask myself, is it POIS in relation to the climate of the city where I live! It is certain from my long experience; POIS symptoms are less severe in cities with dry climate.
Welcome to the forum, Rare ! I hope you will find significant relief form the information you find here!
-
Hi everyone. I have received an answer from Dr Osur to the e-mail I have sent to him just yesterday. Here is his answer:
Dear Quantum,
Thank you for your mail. I am among the few doctors in Africa that have taken an interest in sexual health so that is why I am familiar with POIS.
Because the etiology of POIS is not clear, what we do now is to treat symptoms. Either Bupropion or Tramadol because of their dopaminergic effect do help although not all individuals may respond the same way. Have you tried them out?
JO
I have sent him a reply summarizing the reports found on the forum from those who have tried one of these two therapeutic alternatives ( I have not tried them myself). Results have been mixed with bupropion. Far less reports for tramadol, mostly positive, but not all.
Since he seems to be in favor of the role of dopamine in POIS pathophysiology, I asked him how he came to this view.
I also have thanked him for his interest and knowledge about POIS.
It's great to see that there is at least one more doctor in the world that is aware of POIS and has even some relief options to offer ! :)
I hope Dr. Osur comes by the forum. I think it would be interesting for him to see other treatments that have helped, some of which go beyond just treatments of symptoms.
In the end of course, we do not have any cures, and most of what we do treats more symptoms than anything, but many treatments (like niacin) seem to "alter" the POIS mechanism producing a sort of prevention rather than alleviation.
What he sees here, may help his insights into the problem.
Tramadol is a fairly strong analgesic isn't it?
-
When an Orgasm Can Destroy Your Life
For men with the rare disorder Post-Orgasmic Illness Syndrome, orgasms can lead to days of physical and psychological misery
(http://i858.photobucket.com/albums/ab143/demografx/56965623-47A6-4C0D-804A-7939489E2423.jpg)
The writer interviewed forum POISers and did his homework on POIS studies.
On Nov 10, 2016, at 11:34 AM, Steven Blum wrote:
Ah they changed their site! It's here:
https://melmagazine.com/these-guys-will-do-anything-to-avoid-coming-279fc4eb1a8b?source=linkShare-898c3474bb43-1478806423
Glad to hear people like it. :)
On Thursday, November 10, 2016, demo wrote:
Hi Steven,
The link to your POIS article is not working.
Recent review @ forum "Best article ever" [from CertainlyPOIS2]
Regards,
demo
Thanks for making us aware of the new link, Demo !
Quantum, thank YOU for making this possible!
I think it should be featured on Welcome Page. Any suggestions where??
-
Tramadol is a fairly strong analgesic isn't it?
Yes, it is, by binding opioids receptors, as it is a relative of narcotic drugs. It also inhibits the reuptake of serotonin and norepinephrin, like many anti-depressants, so it definitively acts in the brain. And it also have some NMDA receptors blocking properties. All these combined are good for POIS ?
https://en.wikipedia.org/wiki/Tramadol
At high doses, there are risks of severe convulsions, and there are many other serious side effects possible as well, so it is available on prescription only.
-
Partial screenshot showing (http://i858.photobucket.com/albums/ab143/demografx/910F5C1A-9EAE-424C-A028-4BC59750AD3F.jpg)Blum & Quantum, et al, effort on our Welcome Page (link below):
(http://i858.photobucket.com/albums/ab143/demografx/C3B5D84B-3A7F-4BD0-A7EB-3A3CFD479277.png)
http://poiscenter.com/forums/index.php?topic=1.msg19710#msg19710
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Not sure if this warrants a thread of it's own, caffeine: my system reacts to it like an instant allergy -- I sneeze -- similar to my immediate [often sneezy] reaction with POIS.
Both POIS-onset and caffeine feel like an allergic reaction. The caffeine reaction is over quickly, but POIS - as you know - is over in days, not minutes.
And the sneezy reaction @ POIS-onset doesn't last long as well. The other symptoms, though, rage on!
-
Not sure if this warrants a thread of it's own, caffeine: my system reacts to it like an instant allergy -- I sneeze -- similar to my immediate [often sneezy] reaction with POIS.
Both POIS-onset and caffeine feel like an allergic reaction. The caffeine reaction is over quickly, but POIS - as you know - is over in days, not minutes.
And the sneezy reaction @ POIS-onset doesn't last long as well. The other symptoms, though, rage on!
It could be interesting, some POISers have mentionned particular reaction to caffeine, on this forum.
For me, I do not tolerate caffeine at all. It hurts my stomach, and its stimulating effect causes me way too much anxiety. I have totally eliminated it from my diet a long time ago, like 25 years ago.
Do you also sneeze when drinking other hot beverages or eating hot soups ? It could be a vasomotor reaction to the temperature change.
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Yes I do sneeze allergically to several things. Now that u mention it I'll keep an eye on what it is that triggers a sneeze. Ah-chooooooooo!!
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Yes I do sneeze allergically to several things. Now that u mention it I'll keep an eye on what it is that triggers a sneeze. Ah-chooooooooo!!
"In vasomotor rhinitis,[14][15] certain nonspecific stimuli, including changes in environment (temperature, humidity, barometric pressure, or weather), airborne irritants (odors, fumes), dietary factors (spicy food, alcohol), sexual arousal, exercise,[16] and emotional factors trigger rhinitis.[17]"
https://en.wikipedia.org/wiki/Rhinitis#Nonallergic_rhinitis
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Oh, great, now I have rhinitis on top of everything else.
Quantum, can you recommend an Rx that would stop my aging process?
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Oh, great, now I have rhinitis on top of everything else.
Quantum, can you recommend an Rx that would stop my aging process?
Compassion meditation :)
It has no interactions with your meds, no negative side effects, and no contraindications, and is available without script, and free of charge. It also has scientific studies to prove its numerous benefits.
Simply the best.
( disclaimer: I declare I have no financial interests in compassion meditation ;) )
for more info:
http://poiscenter.com/forums/index.php?topic=2302.msg19012#msg19012
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Tramadol is a fairly strong analgesic isn't it?
Yes, it is, by binding opioids receptors, as it is a relative of narcotic drugs. It also inhibits the reuptake of serotonin and norepinephrin, like many anti-depressants, so it definitively acts in the brain. And it also have some NMDA receptors blocking properties. All these combined are good for POIS ?
https://en.wikipedia.org/wiki/Tramadol
At high doses, there are risks of severe convulsions, and there are many other serious side effects possible as well, so it is available on prescription only.
I used Tramadol after my tonsils were removed 3 years ago. It made me sleep. I think in a day more than 15 hours. I had a lot of pain after the surgery. So not in a shape to think about sex.
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Oh, great, now I have rhinitis on top of everything else.
Quantum, can you recommend an Rx that would stop my aging process?
And please don't say death! :)
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( disclaimer: I declare I have no financial interests in compassion meditation ;) )
Oh yeah? Then how do you explain Quantum Compassion Meditation, which has your exact same IP address???
(http://i858.photobucket.com/albums/ab143/demografx/42CE968B-ACBF-4110-8F87-5E91524775F0.png)
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;D
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Hi, Vandemolen <waving>
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disclaimer: I declare I have no financial interests in compassion meditation ;) )
Oh yeah? Then how do you explain Quantum Compassion Meditation, which has your exact same IP address???
(http://i858.photobucket.com/albums/ab143/demografx/42CE968B-ACBF-4110-8F87-5E91524775F0.png)
:D :D :D
That sounds good, though, I should reserve this domain name.... hehehe.... and your logo looks great, too !
And, look what I have found : http://quantummethod.org/learn-meditation ..... lol ;)
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Quantum! I saw your link and I'm alarmed! They have stolen your good name & reputation, those scoundrels!! Grrrr! Call my law firm NOW! It's Dewey, Cheatam & Howe:
1.800.LET'S - SUE
Call now!
Don't forget to do a telephone login with your social security number and all your credit card/banking details! It is safe! An agent from Outer Mongolia will then promptly call you back within 13 hours. They say you will then "be happy, no worries!"...and no salesman will call.
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(http://i858.photobucket.com/albums/ab143/demografx/FFE1A031-8AD0-4970-9188-424116004967.jpg)
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Now THAT is what I call serenity.
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<checking blood pressure>
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(http://i858.photobucket.com/albums/ab143/demografx/C68E609D-C5CD-4CD8-94BA-067E3AA2B85D.jpeg)
http://www.complex.com/pop-culture/2015/11/disease-semen-injections-allergy
Warning: this is an unproven, dangerous treatment for POIS.
Fatal anaphylaxis can occur.
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(http://i858.photobucket.com/albums/ab143/demografx/60CB9904-E710-4658-84E8-3514E64737B7.png)
http://m.news24.com.ng/Nigeria/Lifestyle/when-orgasms-make-you-sick-20160909-3
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Interesting, Demo, al those short articles about POIS suddenly appearing in web magazines.... it looks like they read each others content and import some topics.
POIS is trending, too bad they talk about desensitization, when even Waldinger himself have abandoned it, and that they talk about POIS as just an "allergy" rather than a complex immune disorder, again like Waldinger do now.
Maybe the will catch on, when Dr Waldinger will come out with his latest study, and clarifies his view, explaining that POIS is an immune disorder in his view, now, like he explained in his April 2016 review article.
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You're right, Quantum, and here come some more...
(http://i858.photobucket.com/albums/ab143/demografx/560EA58E-3DF5-4F4D-891D-19C6D47BC912.png)
http://m.dw.com/en/allergic-to-sperm-when-sex-becomes-dangerous/a-19251475
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(http://i858.photobucket.com/albums/ab143/demografx/9B7520F6-CCAF-4024-A9A6-D853456F20D8.jpeg)
http://blogs.discovermagazine.com/seriouslyscience/2015/02/19/can-allergic-semen/#.WC0RIrU76aM
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(http://i858.photobucket.com/albums/ab143/demografx/A75D1902-37B1-4606-91C1-1E4CF36A3939.png)
No comment.
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(http://i858.photobucket.com/albums/ab143/demografx/F9DE58AD-611A-4C1C-9F66-A0043904FA6B.png)
http://www.futura-sciences.com/sante/questions-reponses/sexualite-sperme-allergie-syndrome-malaise-post-ejaculatoire-6500/
And for our friends...en français
Interestingly, "POIS" when translated to French is..."SMPE"
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(http://i858.photobucket.com/albums/ab143/demografx/F9DE58AD-611A-4C1C-9F66-A0043904FA6B.png)
http://www.futura-sciences.com/sante/questions-reponses/sexualite-sperme-allergie-syndrome-malaise-post-ejaculatoire-6500/
And for our friends...en francais
Interestingly, "POIS" when translated to French is..."SMPE"
I think it is more accurate, because it is post-Ejaculation, and not post-Orgasmic ( SMPE, not SMPO)
So, in French, I have PEIS. But in English, it would only lead to confusion and to the scattering of an already small amount of resources and attention to try and change the "POIS" name to "PEIS", so better stick with "POIS", the important thing being that we get to understand its causes and how to relieve it, and eventually find a cure for it, whatever name we give to this disorder.
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Please don't take any of the preceding postings of
"semen allergy" as an endorsement. It is shown to make
us more aware of the publicity surrounding POIS -- and
often -- the inaccuracies.
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Here's an old one from 2010:
(http://i858.photobucket.com/albums/ab143/demografx/7B29FAEE-907F-43D6-8934-FB78161B48BA.jpeg)
http://www.tandurust.com/sexual-health/postorgasmic-illness-syndrome.html
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I am attacking from every possible direction this multi-headed POIS monster !
(http://i858.photobucket.com/albums/ab143/demografx/184C76FE-A42A-4546-A2B7-24CA1A7A1836.gif)
This multi-headed POIS monster was recently spotted in Nova Scotia...but is moving quickly to wreak POIS havoc worldwide!
This particular POIS monster is the cognitive type.
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Oh hating the cognitive type. By the way, I was low on money so I've ordered some Tongkat Ali in order to see if testosterone-boosting supplements would help me with POIS-induced brain fog. Next time I have some money, I'll trigger POIS and go to test my hormones right after.
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The NE POIS monster got jealous and demanded equal billing. He wishes us all a Happy & Prosperous & Healthy Holiday Season!
(http://i858.photobucket.com/albums/ab143/demografx/2860045A-B3B1-47BB-AEFC-0AE8547375A1.gif)
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Hmmmm. Makes me wonder what POIS NE monster looks like when he's NOT in the Holidays Spirit ;D
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Now on a happier note, it's not too early to wonder about feasting amidst an abundance of THANKS this week :)
(http://i858.photobucket.com/albums/ab143/demografx/5F9FBBD5-22ED-423A-8637-D4EA4961BA9E.jpg)
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"POIS can feel like a pre-frontal lobotomy has just occurred."
Anyone agree/disagree with that statement?
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I just now saw a POIS subject internet post by Forum Hero Member b_jim from...1999/2000.
IMHO, this makes b_jim:
The Founder Of POIS On-The-Internet!
demo
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Hail to bjim!
Also I wish John21 would post on these forums!
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Haven't seen John21 in a while. He still posts periodically at thenakedscientists.com
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I just now saw a POIS subject internet post by Forum Member b_jim from...1999/2000.
IMHO, this makes b_jim:
The Founder Of POIS On-The-Internet!
demo
bjim is like those inventors that are way ahead of their time that dont get full benefit and recognition of their invention.
Is the site in french.
I found a obscure site either in french or russian(not the one created victor k) that led me to nakedscientist.
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I just now saw a POIS subject internet post by Forum Member b_jim from...1999/2000.
IMHO, this makes b_jim:
The Founder Of POIS On-The-Internet!
demo
bjim is like those inventors that are way ahead of their time that dont get full benefit and recognition of their invention.
Is the site in french.
I found a obscure site either in french or russian(not the one created victor k) that led me to nakedscientist.
I'm happy you found us, CP2!!
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Thank you. If not me be it would be *somebody else because the internet change our lives. For the best and the worst. A day or another one somebody would have told about his problems after orgasm on a blog or facebook page.
Last days I had pain in liver (poor digestion), I asked google how to cure it. Each time I have a problem, I ask google. Millions or billions people do it. This is the same thing for Pois, even if it's a rare disease.
* my english is worst and worst with time, sorry.
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Hail to b_jim!
(http://i858.photobucket.com/albums/ab143/demografx/7A1C17C2-AFD5-4BD3-A0E2-BA90E9C005E4.gif)
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...I'll...test my hormones...
That's exactly what I did.
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b_jim is like those inventors that are way ahead of their time that dont get full benefit and recognition of their invention.
Is the site in french.
I found a obscure site either in french or russian(not the one created victor k) that led me to nakedscientist.
certainlypois2, THANK YOU for being such a loyal, longstanding member going way back with me & b_jim & others to the early NSF days of POIS!
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NSF = naked science forum --
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
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Stef once pointed out an article for those of you whose physicians tell you,
"POIS is all in your head!" :
http://psychcentral.com/blog/archives/2010/10/04/its-all-in-your-head-living-with-chronic-illness/
I love the last sentence in the article: "Above all, listen to your gut."
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Since a lot of us come here, I am writing to explain the "theme" change.
Babylon is no longer supported by the latest versions, and causes bugs, one of which was that EMail addresses were being shown, even though they were disabled.
So bugs fixed, but I'll have to go in and fix up the graphics mods that I once had.
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(http://i858.photobucket.com/albums/ab143/demografx/F9272311-3C3F-478F-A629-C81878B38AB4.jpg)
Sound familiar? :)
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Since a lot of us come here, I am writing to explain the "theme" change.
Babylon is no longer supported by the latest versions, and causes bugs, one of which was that EMail addresses were being shown, even though they were disabled.
So bugs fixed, but I'll have to go in and fix up the graphics mods that I once had.
Thanks, Daveman! :)
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Just a periodic reminder to
please bookmark this site:
https://groups.google.com/forum/m/?hl=en#!forum/poiscenter
If you ever experience any unforeseen technical difficulties here!
It is our alternate/emergency POISCenter site at Google Groups.
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(http://i858.photobucket.com/albums/ab143/demografx/FE438168-1B2A-46BA-B544-770CC65063FA.gif)
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Happy solstice to everyone!
Whatever is your country, religion, culture, everyone on this planet live this solstice at the same time, be it the winter solstice in the North hemisphere, or the summer solstice in the South Hemisphere, because we all go around the sun at the same pace, on the same Earth :-).
So, beyond any cultural belief or view, happiness to you all, in those times where there are festivities all around the world !
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(http://i858.photobucket.com/albums/ab143/demografx/A62AAB8C-A33E-482E-A4E4-A7D2D0386FE1.gif)
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(http://i858.photobucket.com/albums/ab143/demografx/A62AAB8C-A33E-482E-A4E4-A7D2D0386FE1.gif)
Thanks Demo!
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Thank you, Quantum!
You have really contributed enormously to the POIS cause worldwide!
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(http://i858.photobucket.com/albums/ab143/demografx/4C3AF18C-1BF7-40BC-A670-FA6BEF9C76C3.png)
For POIS volunteers at Rutgers, too??
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(http://i858.photobucket.com/albums/ab143/demografx/A693BB10-4715-4356-BCAF-450CEEDE9BCE.jpeg)
http://instinctmagazine.com/post/getting-making-you-sick-post-orgasmic-illness-syndrome
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"Vagus Nerve" in the news
(http://i858.photobucket.com/albums/ab143/demografx/4D175792-20E4-43E1-8474-E0425B118337.png)
http://www.webmd.com/brain/news/20160412/vagus-nerve-stimulation-treatment
I saw another splashy Vagus Nerve headline article in the paper edition of WebMD in my doctor's office today. (I hope science fares better with POIS than it did for the common cold I came in for!) There's a nasty virus going around, long-LONG lasting (weeks/months) so stay well!
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I wish you to recover soon, Demo. Drink a lot of source water, take vitamin C if no contraindication for you, lots of veggies and fruits, and rest. Wash your airways with saline physiologic solution ( Hydrasense, Salinex, SInus Rinse, or the like) 4 to 5 times a day.
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Here is an great article by Mark Hyman, MD, who has a Functional Medicine approach: http://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/
If you want the short version, here is the end of the article :
"Nine Steps to Treating An Autoimmune Disease:
1. Check for hidden infections — yeast, viruses, bacteria, Lyme, etc. — with the help of a doctor, and treat them.
2. Check for hidden food allergens with IgG food testing or just try the UltraSImple Diet which is designed to eliminate most food allergens ( see at http://drhyman.com/downloads/UltraSimpleCompanion.pdf ).
3. Get tested for celiac disease, which is a blood test that any doctor can do.
4. Get checked for heavy metal toxicity. Mercury and other metals can cause autoimmunity.
5. Fix your gut. For details, see my blog on irritable bowel syndrome.
6. Use nutrients such as fish oil, vitamin C, vitamin D, and probiotics to help calm your immune response naturally.
7. Exercise regularly — it’s a natural anti-inflammatory.
8. Practice deep relaxation like yoga, deep breathing, biofeedback, or massage, because stress worsens the immune response.
9. Have an understanding of Functional Medicine, that addresses the underlying cause of disease. "
--
The only thing I have changed is that I have added the link for the PDF document - you do not need to buy the book, just by reading this PDF you will know what this diet is about. In short, it is all evidence for a turn toward an healthy diet: eliminating refined sugar and white flour, replacing caffeine by green tea, getting rid of junk food, unhealthy additive, ....
This is a good checklist for any POIS sufferer to go through. That's a very good starting poit, at least.
Many of these subjects have already been discussed on the forum.
The rest of the article is informative and well written, too, and in lay terms.
Any comments ?
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Thanks, Quantum, the press seems to be having a field day with Vagus Nerve coverage.
(http://i858.photobucket.com/albums/ab143/demografx/B536B36F-E800-4008-AD8F-446CC0A8DBEB.png)
https://www.yashodahospitals.com/blog/health-news/stroke-patient-recovery-by-vagus-nerve-stimulation
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From the above article, I wonder - if Dr K's tVNS POIS treatment proves to work well - if we will need FDA approval for POIS sufferers to use a tVNS device? Right now mostly epilepsy and depression sufferers have been approved for usage.
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Matt, Welcome to the 500 Club! :)
(http://i858.photobucket.com/albums/ab143/demografx/035A02D8-DDEA-4E08-87EF-746E35F85F00.jpg)
(POISCenter tally of current members January, 2017!)
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From the above article, I wonder - if Dr K's tVNS POIS treatment proves to work well - if we will need FDA approval for POIS sufferers to use a tVNS device? Right now mostly epilepsy and depression sufferers have been approved for usage.
I think as long as it is approved for something else doctors can prescribe it for pois. Insurance covering it is a different question.
https://en.wikipedia.org/wiki/Off-label_use
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Thanks, CP2!
My TRT Rx is also off-label use.
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Delete this [spammy POIS "remedy"] thread. It's just driving traffic to the scam site.
Excellent! Deleted entire thread.
Thank you, Neutral!
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An article that is very valuable info, from my point of view, for POIS sufferers:
http://upliftconnect.com/depression-and-inflammation/
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Again, for a second time lately, Demo is presently recovering from a second fainting spell that led him to the ER. He is ok and out of the hospital now, but do not be surprised by his unusual silence.
We all wish you a prompt recovery, Demo !
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Thanks Quantum.
We all hope for a healthy and happy Demografx!
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Thanks, Limejuice! Thanks, Quantum!
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We wish you a good recovery !
This is not the gift we hoped for the 10th year of the naked scientist topic.
Strangely,I spent this friday between doctors and hospital too.
This beggining of 2017 year didn't start very well so we can expect the best for the rest of the year !
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Thank you, b_jim!
Sorry to hear about your doctor/hospital ordeal :(
I went out last night and danced with my wife (haven't done so in many years), so I think/feel that I'm getting back to the same-old-Demo.
:)
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This is...the 10th year of the naked scientist topic.
Yesterday, February 18th, was the exact anniversary day of the
first-ever POIS Internet forum post (by John21, Poster #1) -- 10 years ago.
b_jim posted in June of 2007 (b_jim, Poster #2, posted before me. I was Poster #3).
Look at b_jim's excellent post:
https://www.thenakedscientists.com/forum/index.php?topic=6576.msg95285#msg95285
(http://i858.photobucket.com/albums/ab143/demografx/E7B0EDB2-FF8F-4C65-A5A1-3CAC3AC22A90.gif)
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I will be away for about ten days, till March 6th, so don't worry if I do not post or answer questions or pm.
I will be on vacations, a spring break under the sun of Mexico, in Riviera Maya :)
Demo will sure be present here, but be gentle with him, he is still recovering :)
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Bon Voyage, Señor Quantum!
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Have a good vacation ????????????
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Have a wonderful vacation!
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Reminder: this link is excellent for reviewing
all recent posts, whether you've read them or not:
http://poiscenter.com/forums/index.php?action=recent
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Demografx sorry to hear about your hospital ordeal... get well soon
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Thanks, Bulbo!!
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Quantum, we all hired this Dancing Girl just for your Welcome Back! Oh, come on, don't be shy: give her a Big Hug!!
(http://i858.photobucket.com/albums/ab143/demografx/A821F556-FCFC-4A6D-A70C-36C6A3A17092.gif)
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We often share here about the importance of a healthy diet.
If you still think that "mainstream" food are ok for you, just read this, you may change your mind:
http://www.livestrong.com/article/559453-whats-really-inside-that-cinnabon-classic-cinnamon-roll/
And that's only the tip of the iceberg..... you will never know what pesticide and herbicide have been used on the growing wheat the flour is made of, for example.
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Quantum, I can't upload the photo of your cinnamon roll (Photobucket is down), but it still looks awfully tempting. But you mentioned herbicides & pesticides, and now...you've ruined my treat!!
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Quantum, I can't upload the photo of your cinnamon roll (Photobucket is down), but it still looks awfully tempting. But you mentioned herbicides & pesticides, and now...you've ruined my treat!!
Obviously, those large fast food chains and bakery chains do not use organic flour, and even don't use non-GMO ingredients. People often don't want to acknowledge this, but anytime you eat from any of these restaurants and bakery, be sur you eat genetically-modified food (GMO), non-organic food ( meaning they contain herbicides and pesticides), and a lot of non-healthy additive like those referred too in the link I have posted in my post above ( aspartame, trans fats, industrial emulsifiers, artificial flavors and colors, HFCS, etc...). The reason is clear: those ingredients are cheaper, so they can sell at lower prices ans still make a good profit. Don't worry, if a chain would use organic ingredient and non-GMO foods, they would market it clearly, because their prices would be a bit higher, but they would attract all the health conscious customer....
In the case of a heavily sugared cinnamon roll, there is an impossibility of ever seeing an organic, non-GMO version, because health-conscious customers have let go for a long time of high sugar content food, and often of high-gluten content food, and so on. That is why you will find smoothies bars instead, or health-oriented restaurant, offering organic food, but they offer healthy recipes, not cinnamon buns and french fries. Like fruits and veggies organic smoothies with organic hemp milk and organic cinnamon, and maybe some spirulina powder or macca powder added.....wow, now I am interested :-) And, As a Canadian, why not adding a touch of organic maple syrup..... ;-)
Talking of French fries, you can take a look here if you want to know what is in McDonald"S French Fries...again, you may be surprised: http://www.livestrong.com/article/1002598-whats-really-inside-those-mcdonalds-french-fries/
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Quantum, I can't upload the photo of your cinnamon roll (Photobucket is down), but it still looks awfully tempting. But you mentioned herbicides & pesticides, and now...you've ruined my treat!!
There...I finally got it to work.
(http://i858.photobucket.com/albums/ab143/demografx/774ADC6D-DB60-4D49-A6B8-4E3DB6D4E74A_2.jpeg)
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(http://i858.photobucket.com/albums/ab143/demografx/C9E197AA-DA59-4DFD-92B4-C6990BA1C284.jpeg)
I think I'll go to Starbucks instead.
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Talking of French fries, you can take a look here if you want to know what is in McDonald"S French Fries...again, you may be surprised: http://www.livestrong.com/article/1002598-whats-really-inside-those-mcdonalds-french-fries/
I saw a documentary movie a while back ("Super Size Me") in which this guy subsisted on only McDonalds food for 30 days.
He got VERY sick.
From Quantum's above link:
(http://i858.photobucket.com/albums/ab143/demografx/A415FD14-EACB-4A10-838E-6882C8A6DA6F.jpeg)
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Thanks, everyone, for sending me your supportive (or otherwise constructively-critical)
PM'S (Private Messages) about our new research study.
I am happy to continue being your loyal advocate at NORD. And with our final PI choice.
Best
Demo
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(http://i858.photobucket.com/albums/ab143/demografx/6E64C6FA-D2F1-4178-A10B-9664C5F997F2.jpg)
http://www.mensjournal.com/expert-advice/9-ways-orgasms-may-benefit-your-health-20140414
Article partly looks at information about POIS.
From 2014. I don't recall seeing this before, but the article just recently popped up in Google search results.
Demo
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Cross-posted
(http://i858.photobucket.com/albums/ab143/demografx/ED9A3A1E-58CA-45BB-BA04-BC65AD44CBDF.jpg)
A new $14million fund FOR (future) POIS MEDS/PHARMACEUTICALS/TREATMENTS!
https://globalgenes.org/raredaily/fda-sets-up-new-rare-disease-research-fund/
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Hi everyone, I've been reading on this forum for over 2 years and wanted to share my experience earlier but until now I was too afraid to do so. I very rarely post/publish/comment stuff on the internet (due to a feeling of insignificance i guess) so now I'm happy that I have this sudden just-do-it feeling. Anyway, what I wanted to say is thank you to everyone on the forum for your interesting contributions, it meant a lot to me when I first discovered that I'm not alone with my problems and still serves as a psychological stabilizer.
I'm almost 28 years old and from Germany. Had immune system related problems starting before age 10 (at times severe but mostly medium atopic eczema, embarrasing and very annoying stuff) and developed more symptoms between ages 10 and 16 consisting of low to medium asthma, emerging allergies, depression. Then some physical symptoms were getting fewer while others appeared. Asthma went away, eczema faded slowly. Fatigue was getting stronger and in retrospect, I identified my first orgasm-induced fatigues in this period which caused me to be a zombie in school. If a teacher asked my anything out of the blue (I never voluntarily spoke in class) I was too confused mentally to find words. In spite of these problems, I always had a strong motivation to (over)compensate and somehow kept getting a better overall life experience, slow but steady. This trend continued between ages 19 and 23, even though what I now call POIS symptoms were getting stronger by the year. In the beginning, I would be exhausted during the first day afer orgasm, then 3 days, then 5 with the main other problems being prostate pain/inflammation and digestive issues. Until age 23/24 it was quite manageable and it didn't really have a negative impact on what I was doing with my life, but then it started to go downhill at faster rates, especially because autism-like symptoms and more anxiety appeared which lead to social withdrawal and deeper depressive phases. This development continues until this year where I found myself in my worst spot. Now I've had enough and feel like the last weeks/months are a turning point though I am not trusting myself enough to really believe it.
My POIS
My typical POIS symptoms are triggered by orgasm through sex, masturbation or nocturnal emission and include (not sure if all of these symptoms are related to POIS but most occur in an expected way based on time of last orgasm):
Physical
cold shivers, nausea, nerve pain (mostly in feet), fatigue, muscle weakness, hot flashes after mild exertion, impaired motor function (clumsy), weak voice, runny nose, flu-like symptoms, arthritis-like pain in wrists/ankles/knees, pressure on my chest/solar plexus accompanied by heavy air release throughout the day, heartburn/reflux, shortness of breath, dry skin, rare and short but sometimes very intense pain in kidney/bladder/prostate, chronically underweight, urine and feces changing consistency/color/smell (in what seems to be the same pattern every cycle), sometimes prostate fluid/semen in urine and feces, digestive issues and higher fatigue after eating, horniness, vomiting after quickly escalated exercise, celiacs disease, hay fever
Cognitive
brain fog, depression/lethargy, paradoxical/conflicting beliefs and ideals, negative thought loops, self doubt/loathing, autism-like thoughts/behavior, high self consciousness, tendency towards keeping things under control, overanalysing things, emotional instability, nervousness/anxiety (like constant fight or flight mode), irritability, impaired speech/finding words, shifting personality
The symptoms I experience are usually not severe by themselves but all or many of them together make it very hard to live life how I would like to (worst during winter). By now, the next cycle usually begins before I see an end of the previous cycle which means symptoms just shift around based on the phase I'm in. Between 10 and 20 days after orgasm I usually have regeneration and improvements but I rarely make it that far (due to 3 possible causes: too horny and can't stay abstinent, managing to stay abstinent but nocturnal emission occurs or I just want to go back to the early days of the cycle where I feel physically worse but my social problems/anxiety are lower which is sometimes important). However, I identified some things that help me and overall I see more and more patterns emerging (I've been thinking about how to log/quantify my symptoms so I can confirm these patterns but yet couldnt find a solution that I can commit to). I don't want to mention these patterns because they are too speculative, though inflammation seems to play the biggest role.
Strategies for coping
Currently
building up a strong exercise routine, regulating my bio-rythm, figuring out what foods I can tolerate by testing myself and with doctors (testing for sorbite and fructose this week), testing supplements (tried many of those talked about here on the forum, but not sure what helps, up next is CBD oil), learning more about the symptoms and chain-reactions in POIS
Considering
reintroducing meditation routine, consulting a psychologist
Thanks for reading.
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Many thanks, paradoxx!
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Thanks paradoxx, for having share your POIS story.
Keep on searching what adjustments to your lifestyle and diet will bring you relief.
I do think that both meditation and psychotherapy are indeed good to consider. Both have been part of my life for years, and they have been of great help to keep my anxiety level in the "normal" range more and more often.
About meditation, no more than 10 minutes a day is enough, it's the cumulative effect that is good. No need to meditate for 1 hours every 3 to 4 days. After 6 to 8 weeks of 10 mins a day, the cumulative effect is kicking in.
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Interesting another poiser with celiac. Nice post paradoxx. I'm wondering how the CBD oil will work for you (it's supposed to have some benefit in celiac)
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(http://i858.photobucket.com/albums/ab143/demografx/07C77A61-7C67-4BB6-A11A-194984908529.jpg)
http://www.nationalpost.com/m/wp/health/blog.html?b=news.nationalpost.com/health/0526-orgasm
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Cross posted from another thread
For readers here who might ever contemplate suicide and be tempted one day by a DRASTIC decision (yes, drastic: it's a permanent solution to a temporary problem!!) :
•In the USA, a good supportive hotline to call is:
1-800-SUICIDE
(1-800-784-2433)
•All other countries:
http://www.befrienders.org
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(http://i858.photobucket.com/albums/ab143/demografx/2001-12/AC2AE3B7-695B-4F5E-AEF8-36AA0F48B020.jpg)
http://www.news.com.au/lifestyle/relationships/sex/weird-things-happen-to-some-people-after-orgasm/news-story/759f4bc901eb42528550f4e131198e87
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(http://i858.photobucket.com/albums/ab143/demografx/2001-12/AC2AE3B7-695B-4F5E-AEF8-36AA0F48B020.jpg)
http://www.news.com.au/lifestyle/relationships/sex/weird-things-happen-to-some-people-after-orgasm/news-story/759f4bc901eb42528550f4e131198e87
Seizures? :o
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Hey guys. Unrelated to previous posts. What's the progress like with that study at Rutgers? Is there any? I've heard nothing in almost 2yrs.
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Hey guys. Unrelated to previous posts. What's the progress like with that study at Rutgers? Is there any? I've heard nothing in almost 2yrs.
Hi Andy... you have missed some important news. You may want to take a look here : http://poiscenter.com/forums/index.php?topic=2449.msg20749#msg20749
After this "surprise", you may end on a more positive note at http://poiscenter.com/forums/index.php?topic=2462.msg20970#msg20970
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Hi everyone,
I'm leaving tomorrow for a couple of weeks, and be back around July 10th, so don't be surprised if I am silent or do not answer posts addressed to me. I will be away from home, visiting Barcelona in Spain and Southern France, and intend to stay away from cell phones and computers during my vacations :)
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You may have noticed that all of my graphics are...gone.
Photobucket -- with which I do my graphic magic -- without warning - decided they want $399 to permit "3rd party hosting" of my images! :( :(
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Hello guys,
Nothing revolutionary, just a recap of past articles:
https://www.researchgate.net/publication/316834619_Post-Orgasmic_Illness_Syndrome_Where_Are_We
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You may have noticed that all of my graphics are...gone.
Photobucket -- with which I do my graphic magic -- without warning - decided they want $399 to permit "3rd party hosting" of my images! :( :(
Sad day. Any other photo hosting sites on the interweb?
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Thanks, Limejuice!
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yeah no way!!!
http://newscdn.newsrep.net/h5/nrshare.html?id=03A8703C2210100001_us&r=3&lan=en_US&pid=14&app_lan=&mcc=310&declared_lan=en_US&pubaccount=ocms_0&referrer=200620&showall=1&mcc=310
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Hello guys,
Nothing revolutionary, just a recap of past articles:
https://www.researchgate.net/publication/316834619_Post-Orgasmic_Illness_Syndrome_Where_Are_We
Thanks for the link, Gabin!
Considering the very low number of MDs knowing about POIS and interested in it, it is great to see a new name, Dr.Ege Can Serefoglu , from Turkey, from an Urology department in Istanbul.
It's getting late here, and I am still affected by jet lag, but I may try to contact him in the coming days or weeks ( his e-mail address is at the end of the article).
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You may have noticed that all of my graphics are...gone.
Photobucket -- with which I do my graphic magic -- without warning - decided they want $399 to permit "3rd party hosting" of my images! :( :(
Hi Demo,
You could migrate the more important ones to Flickr or Imgur, that are still free, for now at least.
You could change the more important links only, like your avatar and the Welcome gif in your welcoming message, and redo those links.
But obviously, it would be impossible to redo all the links to all of your posts.
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MANY THANKS, QUANTUM! :) :)
Avatar (on this post!) & Welcome gifs, as you suggested!
(http://www.sethlevine.com/wp-content/uploads/welcome.jpg)
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You may have noticed that all of my graphics are...gone.
Photobucket -- with which I do my graphic magic -- without warning - decided they want $399 to permit "3rd party hosting" of my images! :( :(
:) :) Sad Happy day...
Limejuice/mod edit
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Hello guys,
Nothing revolutionary, just a recap of past articles:
https://www.researchgate.net/publication/316834619_Post-Orgasmic_Illness_Syndrome_Where_Are_We
Thanks for the link, Gabin!
Considering the very low number of MDs knowing about POIS and interested in it, it is great to see a new name, Dr.Ege Can Serefoglu , from Turkey, from an Urology department in Istanbul.
It's getting late here, and I am still affected by jet lag, but I may try to contact him in the coming days or weeks ( his e-mail address is at the end of the article).
Interesting background info on Dr. Serefoglu. Surprised to see that he's also a surgeon.
http://www.issm.info/find-a-provider/ege-can-serefoglu-md/
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yeah no way!!!
http://newscdn.newsrep.net/h5/nrshare.html?id=03A8703C2210100001_us&r=3&lan=en_US&pid=14&app_lan=&mcc=310&declared_lan=en_US&pubaccount=ocms_0&referrer=200620&showall=1&mcc=310
;D
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Williams syndrome, almost as strange as POIS:
http://news.nationalgeographic.com/2017/07/williams-health-love-genetics-books/
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This is my 3,000th post here! (Plus 8,000 on other forum). Thanks, all, I've learned a lot :)
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...happy birthday to you, happy birthday to you... today Demo turned 3,000.
Needless to say he is a very wise man.
Perhaps more impressive is in dog years he's 11,000 (nsf + here).
Joking aside we are 11k posts better and closer to our goals!
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This forum helps us a lot. Glad to have found it. But i do wish i wasnt born with POIS.
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:) Thank you, Limejuice & Bulbo! :)
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There is a new research about bactaria in the bowels. This may have an effect on POIS. In a few weeks I hope to learn more at my appointment with the doctor who did my desens and who helped me with the special cbd oil (20%). This research sounds promising.
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There is a new research about bactaria in the bowels. This may have an effect on POIS. In a few weeks I hope to learn more at my appointment with the doctor who did my desens and who helped me with the special cbd oil (20%). This research sounds promising.
So what I am saying: don't lose hope after the shutdown of the nervus vagus research. The research in The Netherlands goes on. When this bowel research helps me I will share this with all of you when I am given the green light. This bowel research cured someones whith eczema after only 1 treatment!
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I need a better replacement than nicotine and caffeine for cognitive POIS.
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There is a new research about bactaria in the bowels. This may have an effect on POIS. In a few weeks I hope to learn more at my appointment with the doctor who did my desens and who helped me with the special cbd oil (20%). This research sounds promising.
I personally tried CBD oil before. It definitely stays in your system a long time. It made me anxious after a while and took days to get out my system. It seemed to work at first but than I hated the effects of the oil that I had. I no longer take it anymore.
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There is a new research about bactaria in the bowels. This may have an effect on POIS. In a few weeks I hope to learn more at my appointment with the doctor who did my desens and who helped me with the special cbd oil (20%). This research sounds promising.
I personally tried CBD oil before. It definitely stays in your system a long time. It made me anxious after a while and took days to get out my system. It seemed to work at first but than I hated the effects of the oil that I had. I no longer take it anymore.
The regular cbd oil with 2,5% didn't help me. But the 20% cbd oil did. The 2,5% oil is for sale on Dutch websites. But the 20% is produced by a special pharmasist.
But one guy in The Netherlands was helped by the 2,5% cbd oil. The thing is that it only works after two weeks of abstince. For me even the 20% didn't work for me after a week. It worked after two weeks.
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Sorry for the ignorance, but how work desens? It's only for POIS that is thought to be allergic?
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Unvers, my understanding is that desens has been abandoned as a POIS treatment.
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Sorry for the temporary outage. None of us could access POISCenter for some time. But Daveman, Quantum & I worked all weekend with our hosting service.
As you can see...it’s now fixed!
Many thanks for all your patience.
Demo
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Sorry for the temporary outage. None of us could access POISCenter for some time. But Daveman, Quantum & I worked all weekend with our hosting service.
As you can see...it’s now fixed!
Many thanks for all your patience.
Demo
Thanks.
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Thanks, CP2!
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Guys, what is the latest on the Rutgers research? Are we going to get anything out of it or has the research been abandoned? ???
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Guys, what is the latest on the Rutgers research? Are we going to get anything out of it or has the research been abandoned? ???
Hi joelawerence,
Unfortunately, there will be no update about the Rutgers Study. It has been aborted, and, very predictably considering how scientific research works, no data or info will be given by Rutgers about what have been done in the few months it has been running. Even if we could have been handed the survey results, especially the written answers, it could have been impossible to make them available, because they were given on an anonymous basis, never to be published anywhere. It would have been completely against ethics to publish them, and Rutgers would not have given them anyway, knowing how important confidentiality is, and aware that they do not want any other legal problems related to this canceled study.
What is new is the new RFP on NORD website, so our 31,000$ grant will be awarded to another team, as soon as possible, so another POIS study will start.
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Thank you, Quantum!
And joelawerence!
Best,
Demo
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Guys, what is the latest on the Rutgers research? Are we going to get anything out of it or has the research been abandoned? ???
Hi joelawerence,
Unfortunately, there will be no update about the Rutgers Study. It has been aborted, and, very predictably considering how scientific research works, no data or info will be given by Rutgers about what have been done in the few months it has been running. Even if we could have been handed the survey results, especially the written answers, it could have been impossible to make them available, because they were given on an anonymous basis, never to be published anywhere. It would have been completely against ethics to publish them, and Rutgers would not have given them anyway, knowing how important confidentiality is, and aware that they do not want any other legal problems related to this canceled study.
What is new is the new RFP on NORD website, so our 31,000$ grant will be awarded to another team, as soon as possible, so another POIS study will start.
Thanks Quantam for the update. Such a shame that it got cancelled.
Hope that someone new gets interested in doing this research.
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Happy Thanksgiving everyone!
Demo
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GOOGLE POIS ALERT:
Postorgasmic Illness Syndrome
As-it-happens update November 20, 2017
NEWS
7 Side Effects Of Having Sex You Have Probably Experienced
360Nobs.com
https://www.360nobs.com/2017/11/7-side-effects-sex-probably-experienced/
“Orgasmolepsy”??? :)
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Google POIS Alert November 26, 2017
From Forbes Magazine
“Feeling Ill After Ejaculating? You Might Have "Post-Orgasmic Illness Syndrome"
https://www.forbes.com/sites/zhanavrangalova/2017/11/26/feeling-ill-after-ejaculating-you-might-have-post-orgasmic-illness-syndrome/#5ea9d779111c
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I wrote to the author of the above article and invited her to visit our forum.
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update November 28, 2017
NEWS
This Bizarre Post-Orgasm Illness Is Baffling Scientists
IFLScience
Post-orgasmic illness syndrome (POIS) is a mostly male-based affliction that is incredibly rare. Immediately or soon after climaxing, it triggers a range ...
http://www.iflscience.com/health-and-medicine/this-extremely-rare-postorgasm-flulike-illness-is-baffling-scientists/
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Google POIS Alert
Post Orgasmic Illness Syndrome POIS
As-it-happens update ? November 28, 2017
This Mysterious Post-Orgasm Illness Could Be Caused by Semen Allergy
ScienceAlert
The condition – called Post-Orgasmic Illness Syndrome (POIS) – was only first reported in 2002, but since then some 50 cases have been ...
https://www.sciencealert.com/rare-post-orgasm-illness-is-real-and-warrants-further-research-study-finds-pois-semen
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3 in a row? I never saw this much POIS Google Alert activity, I wonder why so many of these articles are coming out just now?
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3 in a row? I never saw this much POIS Google Alert activity, I wonder why so many of these articles are coming out just now?
They are always quoting the "50 cases in the world" sentence, so I guess they are using the same sources (though they are not really exact, there are surely more than 50 cases in the world!)
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Thanks, Observer, that makes perfect sense!!
Best wishes to you & yours!
Demo
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3 in a row? I never saw this much POIS Google Alert activity, I wonder why so many of these articles are coming out just now?
They are always quoting the "50 cases in the world" sentence, so I guess they are using the same sources (though they are not really exact, there are surely more than 50 cases in the world!)
Yes, Observer, I’m sure there are...51 cases!!!
I don’t think b_jim will agree!
;D ;D
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3 in a row? I never saw this much POIS Google Alert activity, I wonder why so many of these articles are coming out just now?
They are always quoting the "50 cases in the world" sentence, so I guess they are using the same sources (though they are not really exact, there are surely more than 50 cases in the world!)
It is because those journalists do not know how to read scientific review articles. In the recent review article on POIS published by the Departement of Urology of Tulane University ( http://www.smr.jsexmed.org/article/S2050-0521(17)30116-6/abstract ), which is at the source of this recent "POIS short-articles burst", they clearly states that " There are approximately 50 cases of POIS in the literature". That means that there are 50 cases reported in the scientific literature ( most of them by Waldinger), and this does not mean at all that there are 50 cases in the world, only that 50 cases have been written about and reported, to date, by different doctors and researchers in different medical papers.
Someone should post a message/comment after such false interpretations, to get the record straight, and state that we have over 500 members/cases on our forum alone, and that's only a fraction of the existing cases, and the real prevalence of this rare syndrome is not known yet because there is not enough research done about POIS.
There, I had to say that :)
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Nice, you make a good job with "google alerts" :)
I imagine that an article in the famous Forbe magazine have a fantastic media power and it's a good thing for Pois communauty.
50 cases is a joke :)
I stopped my count at 450. I estimate 1000 to 1500 Pois-self declared in the world. Maybe much more.
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Wow that Forbes article is really good, obviously not up to date with whats going on in this forum but still. Thanks for sharing demo:)
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Thanks, paradoxx! And here’s another “biggie”!
Google POIS Alert
“Orgasms Can Cause Men to Contract Mysterious Flu-Like Symptoms That Scientists Can't Explain”
Newsweek
A rare condition called Post-Orgasmic Illness Syndrome causes men to develop flu-like symptoms after they ejaculate. POIS was first reported in 2002, ...
The syndrome post-orgasm, a handicap for all the world - The Stopru
Fever, uncontrolled ejaculation and memory lapses. Men are allergic to orgasm -
http://www.newsweek.com/mysterious-medical-condition-men-cold-allergy-symptoms-723880
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update November 29, 2017
This mysterious post-orgasm illness could be caused by semen allergy
Information-Analytic Agency NEWS.am (press release) (blog)
According to a new review of POIS by researchers at...
https://med.news.am/eng/news/16307/this-mysterious-post-orgasm-illness-could-be-caused-by-semen-allergy.html
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Careful reading required by POISers when it comes to “allergy” origin!
Quantum can explain better than me.
:)
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Forbes and Newsweek! Now we’re getting some serious attention!
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Nice, you make a good job with "google alerts" :)
Thanks, b_jim!
I imagine that an article in the famous Forbes magazine have a fantastic media power and it's a good thing for Pois communauty.
Yes!
50 cases is a joke :)
I stopped my count at 450. I estimate 1000 to 1500 Pois-self declared in the world. Maybe much more.
Maybe they’re talking about the research study of 45 POIS cases?
Personally, I am very skeptical about finding 45 willing POIS research study male volunteers in the Netherlands - - a small country.
It took the Naked Scientists POIS Forum *forever* to find that many (45) self-identified POISers (b_jim might know how long it actually took to reach 45 POISers)...WORLDWIDE!
I suspect - - but can’t prove - - a bias toward premature ejaculators (for example, Waldinger’s specialty) in the study, not primary cases of POIS.
One man’s opinion.
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I estimate 1000 to 1500 Pois-self declared in the world. Maybe much more.
Regarding “POIS self-declared”: If you asked me 20 years ago if I had POIS, I would say “no” - - although my POIS was in full-attack mode!!
(This is theoretical because 20 years ago, the term “POIS” had not yet come into play).
Maybe still true today - - Many POISers do not realize that they *have* POIS!
They think it’s “something else”.
Like I did.
:)
b_jim, thank you for bringing to our attention the concept of SELF-DECLARED.
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...In the recent review article on POIS published by the Departement of Urology of Tulane University ( http://www.smr.jsexmed.org/article/S2050-0521(17)30116-6/abstract ), which is at the source of this recent "POIS short-articles burst"...
Quantum, thanks for clearing up the mystery behind all these Google Alerts!
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Wow that Forbes article is really good, obviously not up to date with whats going on in this forum but still. Thanks for sharing demo:)
My correspondence with Forbes’ POIS author:
On Nov 29, 2017, at 3:14 PM, Zhana Vrangalova wrote:
Thank you for the kind words! Glad I could help bring awareness to it. I'm not a clinician, I'm more of a science-writer in this case, but I wish you all the best!
Zhana
Quoting demografx:
Thank you for writing the article!
I’ve been moderating the largest POIS forum on the internet for over 10 years now. Your writing is so crucial to our badly needed publicity & awareness of this debilitating condition.
Would love to have you visit!
Best,
“demografx”
Administrator
POISCenter.com
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update November 30, 2017
NEWS
“What It's Like to Be Allergic to Your Own Orgasms”
Men's Health Magazine
Dean* was 13 years old the first time he ever masturbated. Immediately after his first orgasm, he found that his energy plummeted and his brain felt slow. “Within like five seconds, I would go from top of the world to just terrible,” Dean, now 24, told Men's Health. Stringing together sentences and saying ...
https://www.menshealth.com/health/inside-post-orgasmic-illness-syndrome
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Careful reading required by POISers when it comes to “allergy” origin!
Quantum can explain better than me.
:)
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My correspondence with Forbes’ POIS author:
On Nov 29, 2017, at 3:14 PM, Zhana Vrangalova wrote:
Thank you for the kind words! Glad I could help bring awareness to it. I'm not a clinician, I'm more of a science-writer in this case, but I wish you all the best!
Zhana
Excellent demo, well done. Hopefully, awareness will be picking up during the coming days/weeks thanks to this new POIS research. 8)
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Thank you, Observer, it does seem to be going that way! :)
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Google POIS Alert
Post Orgasmic Illness Syndrome
As-it-happens update December 1, 2017
NEWS
“Men who get flu-like symptoms after sex might have rare illness”
The Independent
Post-orgasmic illness syndrome (POIS) is a rare condition that gives men flu-like symptoms immediately after they ejaculate. The first case of the chronic disorder was documented in 2002, however, more than 50 patients have since emerged around the world, a new study has found. Sufferers can ...
http://www.independent.co.uk/life-style/health-and-families/men-flu-symptoms-sex-after-rare-illness-post-orgasmin-illness-syndrome-post-coital-a8084396.html
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update December 2, 2017
NEWS
“It is possible for men to be allergic to sex, research shows”
Netdoctor
If so, it could be that you're allergic to sex. Yes, you heard us right. New research shows that a rare condition called Post-Orgasmic Illness Syndrome (POIS) has affected more than 50 patients around the world since first being documented in 2002 – and it could be more widespread than initially thought.
http://www.netdoctor.co.uk/healthy-living/sexual-health/news/a29243/men-allergic-to-sex/
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In reading this news flurry, you will realize there is some inaccurate information, questionable hypotheses, etc.
The point of showing the articles is not POIS state-of-the-art accuracy or treatment breakthroughs, but to demonstrate the increased *POIS awareness* they are now making possible.
And this is all coming from Tulane’s work.
Nice preview of possibilities!
Continued POIS publicity means that one day your doctor just might stop scratching his/her head confusedly when you say you have POIS!
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update December 4, 2017
NEWS
“Men allergic to SEX are falling ill with flu-like symptoms - and it could be caused by their own semen”
Daily Mail
This rare and understudied phenomenon known as post-orgasmic illness syndrome, or POIS, is believed to be caused by men
http://www.dailymail.co.uk/health/article-5143993/Men-allergic-SEX-falling-ill-flu-like-symptoms.html
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I see what you mean demo with inaccurate information:
''Men who experience flu-like symptoms after having an orgasm are allergic to sex, researchers have found''
Not true. Researchers haven't found proof of allergy yet.
''Complaints of POIS symptoms were reported in their head, eyes, nose, throat, and muscles once their semen came in contact with their skin
Also not true. Patients don't react to their semen when it comes into contact with their skin.
''They didn't feel ill when they masturbated without ejaculating...''
I get sick from the release of pre-ejaculate without ejaculation, I even told Waldinger that myself. This must be an old quote.
''...meaning the more they ejaculated the lesser their symptoms became''.
That is not what hyposensitization is. Oh and go check out the toxic comments in that article, it really brings some POIS awareness to society for sure, these guys should experience pois for a few months before crawling back on their knees crying and begging for relieve.
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update December 4, 2017
NEWS
“Men allergic to SEX are falling ill with flu-like symptoms - and it could be caused by their own semen”
Daily Mail
This rare and understudied phenomenon known as post-orgasmic illness syndrome, or POIS, is believed to be caused by men
http://www.dailymail.co.uk/health/article-5143993/Men-allergic-SEX-falling-ill-flu-like-symptoms.html
I posted a comment on this article - I am sure you will find which one :D . I know that Daily Mail is a tabloid newspaper but it still gets a lot of views. We can only hope that some POISers read it and visit this site (I posted the name of this forum in my comment).
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update December 4, 2017
NEWS
“Men allergic to SEX are falling ill with flu-like symptoms - and it could be caused by their own semen”
Daily Mail
This rare and understudied phenomenon known as post-orgasmic illness syndrome, or POIS, is believed to be caused by men
http://www.dailymail.co.uk/health/article-5143993/Men-allergic-SEX-falling-ill-flu-like-symptoms.html
I posted a comment on this article - I am sure you will find which one :D . I know that Daily Mail is a tabloid newspaper but it still gets a lot of views. We can only hope that some POISers read it and visit this site (I posted the name of this forum in my comment).
Thanks for promoting our site, Observer!! :) :)
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I see what you mean demo with inaccurate information:
''Men who experience flu-like symptoms after having an orgasm are allergic to sex, researchers have found''
Not true. Researchers haven't found proof of allergy yet.
''Complaints of POIS symptoms were reported in their head, eyes, nose, throat, and muscles once their semen came in contact with their skin
Also not true. Patients don't react to their semen when it comes into contact with their skin.
''They didn't feel ill when they masturbated without ejaculating...''
I get sick from the release of pre-ejaculate without ejaculation, I even told Waldinger that myself. This must be an old quote.
''...meaning the more they ejaculated the lesser their symptoms became''.
That is not what hyposensitization is. Oh and go check out the toxic comments in that article, it really brings some POIS awareness to society for sure, these guys should experience pois for a few months before crawling back on their knees crying and begging for relieve.
Muon, excellent critique!!
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Google POIS Alert
Post Orgasmic Illness Syndrome POIS
As-it-happens update December 5, 2017
NEWS
“Can men actually be allergic to sex? Spoiler: yes, and so can women.”
Metro US
There might be another reason why men roll over and go to sleep after sex: They're not feeling so good. Post-orgasmic illness syndrome (POIS) is a ...
Men allergic to SEX are falling ill with flu-like symptoms...
https://www.metro.us/sex-dating/post-orgasmic-illness-syndrome-sex-allergy
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Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update December 4, 2017
NEWS
“Men allergic to SEX are falling ill with flu-like symptoms - and it could be caused by their own semen”
Daily Mail
This rare and understudied phenomenon known as post-orgasmic illness syndrome, or POIS, is believed to be caused by men
http://www.dailymail.co.uk/health/article-5143993/Men-allergic-SEX-falling-ill-flu-like-symptoms.html
I posted a comment on this article - I am sure you will find which one :D . I know that Daily Mail is a tabloid newspaper but it still gets a lot of views. We can only hope that some POISers read it and visit this site (I posted the name of this forum in my comment).
Excellent, Observer! Thank you!
I hope other forum members will follow your good example.
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Google POIS Alert
Several more came in today, including Yahoo News. I won’t post them, we all get the idea by now how this is being reported.
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Posted this one for interesting headline
Google POIS Alert
Post Orgasmic Illness Syndrome POIS
As-it-happens update December 6, 2017
NEWS
“Mysterious 'post-orgasmic' illness which leaves men
unable to talk after sex”
Metro
http://metro.co.uk/2017/12/06/mysterious-post-orgasmic-illness-leaves-men-unable-talk-sex-7136184/
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We have hit the 600 members mark today !
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We have hit the 600 members mark today !
:) :)
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If we represent 1% of POISers that would make us 60,000 strong worldwide. I think that’s a reasonable (conservative) number.
Anyone else care to take a stab at the # of possible POISers worldwide?
Please post your thoughts.
Best early holiday wishes,
Demo
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If we represent 1% of POISers that would make us 60,000 strong worldwide. I think that’s a reasonable number.
Anyone else care to take a stab at the # of possible POISers worldwide?
Please post your thoughts.
Someone here in the forum said like a ratio of 1/100.000 men - that would put the number around 35,000-40,000 POISers. In my opinion, this is a conservative estimate.
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I don't know if I will have enough time to post here during the next days.
So I wish you a merry christmas and I hope you will spend good time with the persons you love. As I get older, realize these moments are precious.
Less seriously, here a small gift, saucy but cute something made me smile :
https://www.youtube.com/watch?v=HtKJ7_WvHBE
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I don't know if I will have enough time to post here during the next days.
So I wish you a merry christmas and I hope you will spend good time with the persons you love. As I get older, realize these moments are precious.
Less seriously, here a small gift, saucy but cute something made me smile :
https://www.youtube.com/watch?v=HtKJ7_WvHBE
Best wishes & Happy Holidays, to b_jim and all forum members, fellow Administrators, Moderators, NORD & all other friends of POISCenter!
Yours,
Demo
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I see what you mean demo with inaccurate information:
''Men who experience flu-like symptoms after having an orgasm are allergic to sex, researchers have found''
Not true. Researchers haven't found proof of allergy yet.
''Complaints of POIS symptoms were reported in their head, eyes, nose, throat, and muscles once their semen came in contact with their skin
Also not true. Patients don't react to their semen when it comes into contact with their skin.
''They didn't feel ill when they masturbated without ejaculating...''
I get sick from the release of pre-ejaculate without ejaculation, I even told Waldinger that myself. This must be an old quote.
''...meaning the more they ejaculated the lesser their symptoms became''.
That is not what hyposensitization is. Oh and go check out the toxic comments in that article, it really brings some POIS awareness to society for sure, these guys should experience pois for a few months before crawling back on their knees crying and begging for relieve.
Excellent :)
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I don't know if I will have enough time to post here during the next days.
So I wish you a merry christmas and I hope you will spend good time with the persons you love. As I get older, realize these moments are precious.
Less seriously, here a small gift, saucy but cute something made me smile :
https://www.youtube.com/watch?v=HtKJ7_WvHBE
Best wishes & Happy Holidays, to b_jim and all forum members, fellow Administrators, Moderators, NORD & all other friends of POISCenter!
Yours,
Demo
Feel free to share above with any friend of POIS...they are “few and far beteeen”!
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If we represent 1% of POISers that would make us 60,000 strong worldwide. I think that’s a reasonable number.
Anyone else care to take a stab at the # of possible POISers worldwide?
Please post your thoughts.
Someone here in the forum said like a ratio of 1/100.000 men - that would put the number around 35,000-40,000 POISers. In my opinion, this is a conservative estimate.
T H A N K S, O B S E R V E R!
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Happy new year !
I wish you the best for 2018 !
We are more and more on this forum. And there are more and more brillant members here with theories, with new ideas to fight Pois.
2017 wasn't a very good year for me but I feel 2018 will be a great year !
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Happy new year !
I wish you the best for 2018 !
We are more and more on this forum. And there are more and more brillant members here with theories, with new ideas to fight Pois.
2017 wasn't a very good year for me but I feel 2018 will be a great year !
Bonne Année!!
(http://poiscenter.com/forums/index.php?action=dlattach;topic=426.0;attach=498;image)
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(http://1.bp.blogspot.com/-UomEDNFPCjU/Ur40vzA_eWI/AAAAAAAACto/hwxDzPctuvw/s1600/Happy+New+Year+around+the+world+5.jpg)
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(https://www.123greetingmessage.net/wp-content/uploads/2017/12/Happy-New-Year-2018-GIF.gif)
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(http://1.bp.blogspot.com/-UomEDNFPCjU/Ur40vzA_eWI/AAAAAAAACto/hwxDzPctuvw/s1600/Happy+New+Year+around+the+world+5.jpg)
Very nice, Quantum!
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I dont know think this has been mentioned alot. I have come to believe lack of selfcontrol is part of my pois symptoms.
In pois i find it harder to resist eating alot, stop wathcing youtbe videos, stop reading facebook post,news articles and of course watching porn.
When i am out of pois these are non issues.
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I dont know think this has been mentioned alot. I have come to believe lack of selfcontrol is part of my pois symptoms.
In pois i find it harder to resist eating alot, stop wathcing youtbe videos, stop reading facebook post,news articles and of course watching porn.
When i am out of pois these are non issues.
I do this kind of activities that you've mentioned a lot in POIS episodes, especially at the first day after ejaculation, I usually eat 2 junk food meals at the very first hours after ejaculation (sadly they boost POIS symptoms even harder) and It's really hard to resist, personally I would call it "activities that make you pass POIS episodes comfortably" rather than lack of self control, the period that you wait until POIS symptoms are gone is quite a hard-slow process. so I start to do the only activities that my body is capable of during POIS episode "a lot of eating, watching a lot of youtube videos, lying in bed while doing them, etc.), and as the POIS symptoms slowly fades away, I quit doing these activities and focus about an actual work or whatever obligations that I have to do.
so these activities "for me" is at the very least a comfortable way to pass the time during POIS episode, and It's only temporarily.
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I dont know think this has been mentioned alot. I have come to believe lack of selfcontrol is part of my pois symptoms.
In pois i find it harder to resist eating alot, stop wathcing youtbe videos, stop reading facebook post,news articles and of course watching porn.
When i am out of pois these are non issues.
I do this kind of activities that you've mentioned a lot in POIS episodes, especially at the first day after ejaculation, I usually eat 2 junk food meals at the very first hours after ejaculation (sadly they boost POIS symptoms even harder) and It's really hard to resist, personally I would call it "activities that make you pass POIS episodes comfortably" rather than lack of self control, the period that you wait until POIS symptoms are gone is quite a hard-slow process. so I start to do the only activities that my body is capable of during POIS episode "a lot of eating, watching a lot of youtube videos, lying in bed while doing them, etc.), and as the POIS symptoms slowly fades away, I quit doing these activities and focus about an actual work or whatever obligations that I have to do.
so these activities "for me" is at the very least a comfortable way to pass the time during POIS episode, and It's only temporarily.
I am making it point to go to the library more often so i can stay out of the bed during pois.
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Hey guys, just wanna tell you guys what I did so far since I discovered the forum. It's been 10 days since my last ejaculation, and I'm trying to exploit the time as much as possible by doing some fun activities.
If you're interested in abstaining masturbation, I found something worked really like a magic. nowadays I use something called Hops, they give an instant effect to mildly low your libido, very instant effect, I'm talking 30 seconds later after taking 1 capsule my libido dropped down immediatly, It really helps with abstaining, although try to minimize the dose to 2 capsules for 1 day, and I believe It conflicts with caffeine, last time I took it under caffeine effect it gave me drowsiness. the name of the product I use: Nature's Way, Hops Flowers, 310 mg.
why I'm abstaining? I'm trying to make the POIS symptoms 0% and then I'll try niacin for the first time in my life, I wanna make sure I get the effect the same that you guys had, I'll make sure I get the flush, I'm using 500mg niacin. and then after the flush I'll wait 30-40 mins then ejaculate.
Also, I had a terrifying thought today. Is there a possibility that in the future my sons will inherit my POIS when the hit puberty? If so I'll try raising them to avoid sexual activities as much as possible, I don't know If there's married people here with adult sons, If so please tell us.
-
Hey guys, just wanna tell you guys what I did so far since I discovered the forum. It's been 10 days since my last ejaculation, and I'm trying to exploit the time as much as possible by doing some fun activities.
If you're interested in abstaining masturbation, I found something worked really like a magic. nowadays I use something called Hops, they give an instant effect to mildly low your libido, very instant effect, I'm talking 30 seconds later after taking 1 capsule my libido dropped down immediatly, It really helps with abstaining, although try to minimize the dose to 2 capsules for 1 day, and I believe It conflicts with caffeine, last time I took it under caffeine effect it gave me drowsiness. the name of the product I use: Nature's Way, Hops Flowers, 310 mg.
why I'm abstaining? I'm trying to make the POIS symptoms 0% and then I'll try niacin for the first time in my life, I wanna make sure I get the effect the same that you guys had, I'll make sure I get the flush, I'm using 500mg niacin. and then after the flush I'll wait 30-40 mins then ejaculate.
Also, I had a terrifying thought today. Is there a possibility that in the future my sons will inherit my POIS when the hit puberty? If so I'll try raising them to avoid sexual activities as much as possible, I don't know If there's married people here with adult sons, If so please tell us.
Hi Meshal,
Interesting strategy, I will be interested in reading your future updates.
About your concern, I can share that my son, who is now an young adult, do not have POIS. Of course, I never discussed this with him ( I do not discuss about POIS with my children, or anyone, except my wife and my psychotherapist, and this forum), but, he had a steady girlfriend for years, and that never prevent him to keep on with his competitive sports activities, and I never saw any abnormal fatigue or any cognitive or emotional symptoms, even if I knew he had sexual relations with his girlfriend. Of course, I was happy to see that he didn't have this very debilitating syndrome :)
I think POIS is very rare because it believe it is caused by several very specific problems in one single individual, like, maybe, small mutations in more than one pathways like methylation or other elimination pathways in the liver, as well as maybe some problems in some enzymes related to neurotransmitters, and so on. And I think that all POIS sufferers do not all have exactly the same "kit" of metabolic defects leading to "metabolic failure" following ejaculation, this later being a very complex reflex and very demanding process for the body. We usually cope with normal daily activities, when out of POIS, but the high demand linked to ejaculation is overwhelming for our flawed inner machinery, and symptoms then appears.
Considering that our children have a mix of our DNA and the DNA of our spouse, chances are limited that we could transmit POIS on the genetic level. Considering my above hypothesis ( that POIS is caused by multiple small defects, and not only one major DNA defect), our son must inherit each and every single small mutations that contribute in the manifestation of POIS. and they would have not to be compensated for by hteir mother'S DNA. Let's say for example that we have 6 SNPs ( Single Nucleotide Permutations) in our DNA that are the major contributors in creating the manifestation of POIS. Than, for our son to have POIS should first get each and every one of these 6 defects in his own DNA to also have POIS. But usually, those defective SNP are recessive, meaning that the more efficient gene coming from the mother side should be the one manifesting, and than offset for the less functional SNP we may have contributed. So, the chances are very low that all those SNPs are transmitted AND not offset by the mother's genes for all of these particular genes. If our SNPs are heterozygote, meaning that we have one bad and one good gene for a particular defective, POIS-contributing locus ( we all have genes in pairs - one from father, one from mother), than, there is also a chance that we transmit the good one, not the problematic one. This reduce even more still the chance to "transmit" POIS, as I see it.
I hope this will reassure you a bit, Meshal !
In reverse, we can realize how unlucky we have been at the DNA lottery, so that we have enough of the required defects in order for POIS to manifest, and, above this, had some psychological or physical traumas in order for this potential for POIS to manifest ( not all is written in genes, in my opinion, there is almost always a mix of genetic factors and environmental factors ). This would account for how rare POIS is, considering that all men on earth ejaculate once in a while, and just a tiny, tiny fraction have POIS ( 1 in 700 000 ? ).
Well, some are much more unlucky than we are, just think about cystic fibrosis, multiple sclerosis, and the like.... At the end of the day, we all have to do our best with the cards we have in hand :)
-
Hey guys, just wanna tell you guys what I did so far since I discovered the forum. It's been 10 days since my last ejaculation, and I'm trying to exploit the time as much as possible by doing some fun activities.
If you're interested in abstaining masturbation, I found something worked really like a magic. nowadays I use something called Hops, they give an instant effect to mildly low your libido, very instant effect, I'm talking 30 seconds later after taking 1 capsule my libido dropped down immediatly, It really helps with abstaining, although try to minimize the dose to 2 capsules for 1 day, and I believe It conflicts with caffeine, last time I took it under caffeine effect it gave me drowsiness. the name of the product I use: Nature's Way, Hops Flowers, 310 mg.
why I'm abstaining? I'm trying to make the POIS symptoms 0% and then I'll try niacin for the first time in my life, I wanna make sure I get the effect the same that you guys had, I'll make sure I get the flush, I'm using 500mg niacin. and then after the flush I'll wait 30-40 mins then ejaculate.
Also, I had a terrifying thought today. Is there a possibility that in the future my sons will inherit my POIS when the hit puberty? If so I'll try raising them to avoid sexual activities as much as possible, I don't know If there's married people here with adult sons, If so please tell us.
Hi Meshal,
Interesting strategy, I will be interested in reading your future updates.
About your concern, I can share that my son, who is now an young adult, do not have POIS. Of course, I never discussed this with him ( I do not discuss about POIS with my children, or anyone, except my wife and my psychotherapist, and this forum), but, he had a steady girlfriend for years, and that never prevent him to keep on with his competitive sports activities, and I never saw any abnormal fatigue or any cognitive or emotional symptoms, even if I knew he had sexual relations with his girlfriend. Of course, I was happy to see that he didn't have this very debilitating syndrome :)
I think POIS is very rare because it believe it is caused by several very specific problems in one single individual, like, maybe, small mutations in more than one pathways like methylation or other elimination pathways in the liver, as well as maybe some problems in some enzymes related to neurotransmitters, and so on. And I think that all POIS sufferers do not all have exactly the same "kit" of metabolic defects leading to "metabolic failure" following ejaculation, this later being a very complex reflex and very demanding process for the body. We usually cope with normal daily activities, when out of POIS, but the high demand linked to ejaculation is overwhelming for our flawed inner machinery, and symptoms then appears.
Considering that our children have a mix of our DNA and the DNA of our spouse, chances are limited that we could transmit POIS on the genetic level. Considering my above hypothesis ( that POIS is caused by multiple small defects, and not only one major DNA defect), our son must inherit each and every single small mutations that contribute in the manifestation of POIS. and they would have not to be compensated for by hteir mother'S DNA. Let's say for example that we have 6 SNPs ( Single Nucleotide Permutations) in our DNA that are the major contributors in creating the manifestation of POIS. Than, for our son to have POIS should first get each and every one of these 6 defects in his own DNA to also have POIS. But usually, those defective SNP are recessive, meaning that the more efficient gene coming from the mother side should be the one manifesting, and than offset for the less functional SNP we may have contributed. So, the chances are very low that all those SNPs are transmitted AND not offset by the mother's genes for all of these particular genes. If our SNPs are heterozygote, meaning that we have one bad and one good gene for a particular defective, POIS-contributing locus ( we all have genes in pairs - one from father, one from mother), than, there is also a chance that we transmit the good one, not the problematic one. This reduce even more still the chance to "transmit" POIS, as I see it.
I hope this will reassure you a bit, Meshal !
In reverse, we can realize how unlucky we have been at the DNA lottery, so that we have enough of the required defects in order for POIS to manifest, and, above this, had some psychological or physical traumas in order for this potential for POIS to manifest ( not all is written in genes, in my opinion, there is almost always a mix of genetic factors and environmental factors ). This would account for how rare POIS is, considering that all men on earth ejaculate once in a while, and just a tiny, tiny fraction have POIS ( 1 in 700 000 ? ).
Well, some are much more unlucky than we are, just think about cystic fibrosis, multiple sclerosis, and the like.... At the end of the day, we all have to do our best with the cards we have in hand :)
phew! that is a huge relief. I'm really happy for your son, It must be really worrying for you to wait for your son whether he get infected or not. I'm not really familiar with DNA, but from what I understand POIS heritage chance is 1/1000000 so at least I can have "hopefully" acceptable natural offspring. and you're right, sometimes I think of how unfair to me to get POIS, at the same time I tell myself hey, people get worst and worst condition than this.
I'm really really excited to try your pre-pack Quantum, I just need a space of time free of obligation to spent days with POIS
peace
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phew! that is a huge relief. I'm really happy for your son, It must be really worrying for you to wait for your son whether he get infected or not. I'm not really familiar with DNA, but from what I understand POIS heritage chance is 1/1000000 so at least I can have "hopefully" acceptable natural offspring. and you're right, sometimes I think of how unfair to me to get POIS, at the same time I tell myself hey, people get worst and worst condition than this.
I'm really really excited to try your pre-pack Quantum, I just need a space of time free of obligation to spent days with POIS
peace
I cannot be sure that my hypothesis is true, but obviously, POIS is rare, and this suggests that it does not "spread" easily.
If other members have a son, I would like to hear about them as well. So far, I never heard about a member sharing that his son has POIS too, or that his father had POIS. Members could also express themselves about whether or not their father had POIS. Mine didn't.
Let me know of your results with using a pre-pack ! We cannot cure POIS, but getting some relief is a step toward a more normal life :)
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from what I've read from the gentlemen posts here, they've mentioned that there POIS symptoms got heavier over the years, I'm thinking, does POIS develop the symptoms impact by itself just within overtime? or is it within every ejaculation it will gradually develop itself? I'm trying to exploit my young age to fight it back before It's too late, should I just abstain In order to keep the POIS symptoms the same level? or Is it an inevitable and It the symptoms will become heavier no matter what?
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I want to share something interesting, on of my symptoms a heavy joint pains after ejaculation, especially knees. I started taking Vitamin d3 two pills after ejaculation (1000IU)(1000IU), and sleep immediatly. the next day I can stand up from bed so easily without joints pain, but the brain fogging and other symptoms are there.
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I have the feeling vitamin D reduces my Pois too. I take 5000 UI before ejaculation. It seems it reduce my restless legs syndrome and muscular energy loss in legs. But I'm not 100% sure. Taurine is my main remedy and vitamin D seems to complete the effect.
I remember I had small joint pains especially knees but it seems this symptom gone away.
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I have the feeling vitamin D reduces my Pois too. I take 5000 UI before ejaculation. It seems it reduce my restless legs syndrome and muscular energy loss in legs. But I'm not 100% sure. Taurine is my main remedy and vitamin D seems to complete the effect.
I remember I had small joint pains especially knees but it seems this symptom gone away.
hmm I should give taurine a go then, I haven't tried it before, I'm in a no fap period It's been 23 days now, Is it safe to take both niacin and taurine before orgasm? I guess this will prevent poth congitive and physical symptoms.
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This is strange. My last O I did experience a lot of migrating joint pain. I blame it on the good amount of chia seeds I have been trying... which I now avoid.
What I want to know is, especially for my POIS, why does "O" seem to be the catalyst in certain situations like this. I seemed to be tolerating the chia seeds somewhat (still wasn't perfect and I was going to avoid them after testing)... but "O" seemed to set in motion the migrating joint pain.
It's like O either makes the bad feel worse for me, or has no effect at all depending on how well I adhere to my diet.
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I want to share something interesting, on of my symptoms a heavy joint pains after ejaculation, especially knees. I started taking Vitamin d3 two pills after ejaculation (1000IU)(1000IU), and sleep immediatly. the next day I can stand up from bed so easily without joints pain, but the brain fogging and other symptoms are there.
Thanks ofr reporting, Meshal !
If POIS has indeed an auto-immune component, Vit D has been shown helpful in some auto-immune conditions, so it would make sense that it helps in POIS.
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This is strange. My last O I did experience a lot of migrating joint pain. I blame it on the good amount of chia seeds I have been trying... which I now avoid.
What I want to know is, especially for my POIS, why does "O" seem to be the catalyst in certain situations like this. I seemed to be tolerating the chia seeds somewhat (still wasn't perfect and I was going to avoid them after testing)... but "O" seemed to set in motion the migrating joint pain.
It's like O either makes the bad feel worse for me, or has no effect at all depending on how well I adhere to my diet.
Hi GLC,
Hopefully, you are very disciplined and very motivated, and you note everything. If not, it seems like you would never keep your POIS-less state for very long.
Thanks for sharing your notes.
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This is strange. My last O I did experience a lot of migrating joint pain. I blame it on the good amount of chia seeds I have been trying... which I now avoid.
What I want to know is, especially for my POIS, why does "O" seem to be the catalyst in certain situations like this. I seemed to be tolerating the chia seeds somewhat (still wasn't perfect and I was going to avoid them after testing)... but "O" seemed to set in motion the migrating joint pain.
It's like O either makes the bad feel worse for me, or has no effect at all depending on how well I adhere to my diet.
Hi GLC,
Hopefully, you are very disciplined and very motivated, and you note everything. If not, it seems like you would never keep your POIS-less state for very long.
Thanks for sharing your notes.
I would not. If I ate wheat, corn, etc. The symptoms and inflammation would come right back. I'm treating my POIS as a symptom of my possible AI disease of celiac and/or gluten sensitivity (which I will likely get a genetic test for in the future). Most of the foods I react to are gluten cross reactors (corn, brown rice, dairy) and others I have just developed. Good thing is there are treatments/vaccines in the pipeline. My diet for me is not a cure, but strictly adhering to it I am 100% myself again... so this is why I keep note of everything.
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I have the feeling vitamin D reduces my Pois too. I take 5000 UI before ejaculation. It seems it reduce my restless legs syndrome and muscular energy loss in legs. But I'm not 100% sure. Taurine is my main remedy and vitamin D seems to complete the effect.
I remember I had small joint pains especially knees but it seems this symptom gone away.
hmm I should give taurine a go then, I haven't tried it before, I'm in a no fap period It's been 23 days now, Is it safe to take both niacin and taurine before orgasm? I guess this will prevent poth congitive and physical symptoms.
From my opinion it's 100% safe.
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I think that we should contact this man https://www.google.ba/search?q=dr+house&dcr=0&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjxyvn2vPnYAhXM0aQKHfXqBAYQ_AUICigB&biw=853&bih=529#imgrc=YoInOOpp6aZHdM:
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;D
We already contacted dr Pooja Lackshmin (https://www.youtube.com/watch?v=Te4gH_FKHus) ? ?
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I think that we should contact this man https://www.google.ba/search?q=dr+house&dcr=0&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjxyvn2vPnYAhXM0aQKHfXqBAYQ_AUICigB&biw=853&bih=529#imgrc=YoInOOpp6aZHdM:
Well, I think he died in the last episode, so it's too late ! ;D ;D ;D
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(http://www.arjunaishaya.com/wp-content/uploads/2017/04/jekyll-hyde.png)
This is how I feel my personality changes:
in-POIS vs out-of-POIS.
Can anyone guess which is which?
;D
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Continued from Page 133, this thread
Google POIS Alert
Postorgasmic Illness Syndrome
As-it-happens update January 21, 2018
NEWS
“Guys! Do you know about rare post-orgasm sickness POIS?”
International Business Times, India Edition
“Some men suffer from a rare flu-like sickness called Post-Orgasmic...”
https://tinyurl.com/y92dvqxm
Just to reiterate what I mentioned earlier: I’m posting these Google POIS Alerts not for their POIS accuracy (the articles are often just a joke to us here at the forum), but for seeing the public’s - including the medical profession - growing awareness and recognition of the REAL POIS condition.
-
(http://www.arjunaishaya.com/wp-content/uploads/2017/04/jekyll-hyde.png)
This is how I feel my personality changes:
in-POIS vs out-of-POIS.
Can anyone guess which is which?
;D
a zombie would be more accurate than a devil ;)
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This is living proof of how my face look in pois-
https://www.google.ba/search?q=dr+house&dcr=0&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjxyvn2vPnYAhXM0aQKHfXqBAYQ_AUICigB&biw=853&bih=529#imgrc=YoInOOpp6aZHdM:
When i say to girll HI , face like that, she call police imidiatly.
Not kiding :)
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(http://www.arjunaishaya.com/wp-content/uploads/2017/04/jekyll-hyde.png)
This is how I feel my personality changes:
in-POIS vs out-of-POIS.
Can anyone guess which is which?
;D
a zombie would be more accurate than a devil ;)
ZOMBIE! Excellent, Meshal!
(http://2.bp.blogspot.com/-xcl5vwBuCzA/Ul17kSUBFmI/AAAAAAAACaA/XB0eOqPf1hk/s1600/zombieanimated.gif)
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This is living proof of how my face look in pois-
https://www.google.ba/search?q=dr+house&dcr=0&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjxyvn2vPnYAhXM0aQKHfXqBAYQ_AUICigB&biw=853&bih=529#imgrc=YoInOOpp6aZHdM:
When i say to girll HI , face like that, she call police imidiatly.
Not kiding :)
;D ;D ;D
Perfect-looking POIS “face”!!
(http://losdoblesdefamosos.com/imagenesdobles/210/doble-dr-house.jpg)
From Hopeoneday link.
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UPDATE
Guys, I've been trying beets for a couple of times for the past several weeks, they're work incredibly. As I said I'm in Nofap period, but I tend to masturbate without ejaculation just to calm myself. at the same time I suffer from a minor body fatigue that last for maybe 12 hours, but I tried to eat beets right after I masturbate without ejaculation, they completely eliminate my minor body fatigue in the next day. And I remember I used it once after an ejaculation, the body fatigue was mild, but not as good as eating it after fapping without ejaculation.
damn this forum is amazing. I cut them and eat them with peanut butter, because they taste bad :-X.
I might ejaculate this weekend and with trying the niacin for the first time, so excited. ;D
PS: I just noticed the forum doesn't ask me what is b/f anymore in every goddamn post ;D, that was a huge burden.
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UPDATE
Guys, I've been trying beets for a couple of times for the past several weeks, they're work incredibly. As I said I'm in Nofap period, but I tend to masturbate without ejaculation just to calm myself. at the same time I suffer from a minor body fatigue that last for maybe 12 hours, but I tried to eat beets right after I masturbate without ejaculation, they completely eliminate my minor body fatigue in the next day. And I remember I used it once after an ejaculation, the body fatigue was mild, but not as good as eating it after fapping without ejaculation.
damn this forum is amazing. I cut them and eat them with peanut butter, because they taste bad :-X.
I might ejaculate this weekend and with trying the niacin for the first time, so excited. ;D
PS: I just noticed the forum doesn't ask me what is b/f anymore in every goddamn post ;D, that was a huge burden.
Well, it seems that beets can raise testosterone levels. In fact, it is one of those foods that can greatly enhance free testosterone production. You're not the first one who claims that beets help against POIS, if I remember well. Demografx also had a great success with testosterone! ;D
Beets. These red root vegetables are a great source of boron, which is necessary for the production of testosterone, especially free testosterone. Some experts claim beets and their juice boost testosterone production via methylation, a process by which certain chemicals (methyl groups) are added to different parts of proteins, DNA, and other molecules to keep them functioning properly. Methylation is like the finishing touch that allows a substance or component to take the final step in its process or task.
https://www.everydaymale.com/foods-that-boost-testosterone-levels/
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Beets are also a great source of betaïne, also called TMG ( trimethylglycine), which is good for supporting the methylation function. TMG is a good methyl donor.
As can be deduct from its name, betaine was first found in beets.
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...Demografx also had a great success with testosterone! ;D
For about 10 years now. It’s not perfect, not good for everyone, & there are dangers. We must all be careful with *any* powerful drug. My doctor continually monitors and ADJUSTS my dosage. Don’t try it without a doctor monitoring you!
Thanks, Observer, for bringing it up.
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Be carefull with beet juice. It contains nitrate. Using a lot of nitrate can cause cancer. You can drink beet juice, but not on a daily basis. I will try it too. But not every day. Don’t drink beet juice on the days you eat nitrate rich food like fish, spinach, endive and Chinese cabbage.
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...Demografx also had a great success with testosterone! ;D
For about 10 years now. It’s not perfect, not good for everyone, & there are dangers. We must all be careful with *any* powerful drug. My doctor continually monitors and ADJUSTS my dosage. Don’t try it without a doctor monitoring you!
Thanks, Observer, for bringing it up.
Excellent demo.
I think it is very important to underline the risks associated with this treatment. It is not something to do on your own without medical supervision.
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I think that we should contact this man https://www.google.ba/search?q=dr+house&dcr=0&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjxyvn2vPnYAhXM0aQKHfXqBAYQ_AUICigB&biw=853&bih=529#imgrc=YoInOOpp6aZHdM:
Well, I think he died in the last episode, so it's too late ! ;D ;D ;D
;D ;D ;D
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Be carefull with beet juice. It contains nitrate. Using a lot of nitrate can cause cancer. You can drink beet juice, but not on a daily basis. I will try it too. But not every day. Don’t drink beet juice on the days you eat nitrate rich food like fish, spinach, endive and Chinese cabbage.
I'm eating raw beets, is there a difference?
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Be carefull with beet juice. It contains nitrate. Using a lot of nitrate can cause cancer. You can drink beet juice, but not on a daily basis. I will try it too. But not every day. Don’t drink beet juice on the days you eat nitrate rich food like fish, spinach, endive and Chinese cabbage.
I'm eating raw beets, is there a difference?
TLDR version: nitrates from your daily salami, pepperoni, ham and the like are far more dangerous that the overall healthy beets. Antioxidant intake from fruits and veggies or from supplements like vitamin C have a protective effect.
Hi Vandemolen, Meshal and everyone,
Thanks, Vandemolen, for underlying the nitrates concern about beets.
There is also naturally occurring nitrates in whole beets, just like in htie juice. But those are less a problem than nitrates and nitrites injected in processed meat and delicatessen, as preservatives, and to give them a pink color. So, all processed meat and delicatessen, like in the classical ham sandwiches, are more a problem, concerning cancer risks, so when you go to the grocery, buy nitrates-free meat, whenever available ( if it is not specified as nitrate-free, it sure contains nitrates, so read the labels carefully - you will often see "sodium nitrate" in the ingredients). Organic meat, of course, is safe as well.
Nitates are not the cancer-causing molecule per se. It is nitrosamine, a derivative of nitrates, that is causing cancer. Nitrosamine are formed when nitrates are heated at high temperatrue in the presence of protein or other sources of amines, so when cooking processed meat with nitrates and nitrites, you have all the conditions to produce nitrosamines.... and then you eat this. Industrial and processed food are full of these toxic products, so be aware of what you eat ! This could be on of the reason why colon cancers are so frequent in developped countries, and much less in poor, "developing" countries where they barely eat meat and have no grocery stores selling processed meat ( but do not wait for any official statement soon on this topic... just take note that more companies are now offering meats free of nitrites and nitrates, just like more groceries offer organic fruits and veggies with no pesticides and chemical on and in them )
As one can deduct, you have far less risks from beets, because :
1- beets do not contains much proteins, almost none compared to meat, and the presence of proteins is needed for nitrosamine production
2-Beets are very high in antioxydants, as often the case with highly pigmented fruits and veggies, so these are blocking the oxidation of nitrates to nitrosamine. Some studies have even been done with beet roots extract in cancer treatment, and the risk of the nitrate content seems to be offset by the antioxidant content, as there is strong evidence that veggies having a high level of nitrates are, despite this, lowering cancer risks - see https://www.ncbi.nlm.nih.gov/pubmed/26914827
3- beets are not always cooked/heated, so if eaten raw, or made in juice with no heating, no nitrosamines are produced in the process, and risks fall accordingly ( also, not suprising to me, organic fermented beet juice show more anticancer activity than conventionnal, non-organic juice - ref: https://www.ncbi.nlm.nih.gov/pubmed/24798659 )
Also, if you have a healthy diet, with lots of antioxydants, or simply take a vitamin C supplement, or other antioxydant supplementation ( Vit E, polyphenols, carotenoids, etc...), this will protect, at least in part, from nitrosamines, as they will be scavenged by antioxidants.
Vandemolen is right in saying that it is not a good idea to eat a lot of beets every day, but like any other things, they are very healthy when you eat them moderately. Morever, I wouldn't recommend a POIS sufferer to consume too much beets, because the nitrate content helps the erection process.... and usually, we prefer abstinence over high level of sexual activity, for obvious reasons !
For all those interested to read more about this, I have found this article written in lay terms, that is very informative: https://www.healthambition.com/processed-meat-nitrosamines-cancer/
I hope this will help those interested in including beets in their healthy diet to do so in an informed manner.
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Google POIS Alert
Post Orgasmic Illness Syndrome POIS
As-it-happens update February 1, 2018
NEWS
3 times sex can make you sick
Hivisasa
“Yeah, many people are allergic to semen, whether their own or their partners', a condition called post-orgasmic illness syndrome (POIS). Most of these people will feel a fever, runny nose, and upset stomach. Their bodies will detect the proteins in this semen...”
https://hivisasa.com/posts/3-times-sex-can-make-you-sick
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is it ok to drink coffee and niacin at the same day?
this article really concerns me but It's the only one in the internet: https://www.livestrong.com/article/338131-side-effects-of-niacin-and-caffeine-together/
drugs.com didn't mention anything about caffeine
personally caffeine makes my orgasm 10x better, whether It's coffee or energy drink. to be precise I'm planning to drink a caffeine beverage 3 hours before taking niacin, and of course O after 50 min's of the flush from the niacin. did someone do a similar thing? orgasm process is really a rare thing I tend do obviously and I don't want to ruin it really.
I'll ask my psychiatrist about it later but I want to see your point of view here.
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is it ok to drink coffee and niacin at the same day?
this article really concerns me but It's the only one in the internet: https://www.livestrong.com/article/338131-side-effects-of-niacin-and-caffeine-together/
drugs.com didn't mention anything about caffeine
personally caffeine makes my orgasm 10x better, whether It's coffee or energy drink. to be precise I'm planning to drink a caffeine beverage 3 hours before taking niacin, and of course O after 50 min's of the flush from the niacin. did someone do a similar thing? orgasm process is really a rare thing I tend do obviously and I don't want to ruin it really.
I'll ask my psychiatrist about it later but I want to see your point of view here.
Well, to be honest I don't know if there is any specific interaction between these two substances (does not seem to be, according to that link)
What I can tell is that you should avoid eating or even drinking something (except water) from the moment you take niacin until you have your last Orgasm (yes, you can have more than one if it works). If you eat something, probably it is not going to work.
Regarding the 50 min rule (which it always work in my case), I have seen other POISers that say that they get optimum results if they wait more than that (1 hour 30 minutes, something like that). You should observe your reactions and the relief you obtain with niacin!
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POTENTIAL POIS RESEARCHERS/SCIENTISTS RECEIVED THIS EMAIL TODAY - -
Demo
emphasis mine -
NORD Research Grants
*NORD has reopened the call to submit abstracts and letters of intent for the following grants. The deadline is ongoing and all U.S. and international researchers interested in studying these diseases are encouraged to consider applying. For questions related to these grants, email research@rarediseases.org.*
Cat Eye Syndrome – One (1) grant of up to $30,000 for scientific and/or clinical research studies related to Cat Eye Syndrome. Download RFP.
Malonic Aciduria – One (1) grant of up to $50,000 for scientific and/or clinical research studies related to Malonic Aciduria. Download RFP.
Post-Orgasmic Illness Syndrome – One (1) grant of up to $31,000 for scientific and/or clinical research studies related to Post-Orgasmic Illness Syndrome (POIS). Download RFP.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
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Everyone: feel free to send the above to any doctor or organization you feel is qualified. That is how we found our last researcher: WE made the initial contact.
I believe that our chances are improved greatly when the researcher knows who we (POISCenter) are *in advance* of their submitting a proposal to NORD.
Best,
Demo
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Applications will be accepted on a rolling basis until the funding has been awarded.
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Any questions about the RFP, feel free to post them here.
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IMPORTANT: Finding our POIS Researcher
As you all know, the NORD award to a POIS research team (up to $31,000 of our POISCenter-Member-donated funds) has been sluggishly delayed.
Looking back at our historical success in finding someone to research POIS, I believe that our last research project was influenced by our *early* (pre-award) discussions with Dr K.
I think we all played a role in Dr K’s decision to take us on. He was responding to NORD because he *already* knew us and POIS matched his research goals.
So...I think that a PERSONAL MEMBER effort between POISCenter & researchers is invaluable, perhaps even indispensable in our early careers here to annihilate the still misunderstood POIS.
In conclusion, NORD says “it would be wonderful to have [POISCenter] forum members share the RFP information with their doctors and other relevant contacts.”
===============================================
Therefore...*please* send this link below to a doctor you trust and/or to a researcher you can contact who you think would be a good candidate to study POIS:
RFP: (NORD’s Request for Proposal)
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
Many thanks and best wishes to us all!
demo
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Excellent demo, I think this is a team project and open-minded doctors who are treating people with POIS should know about this enterprise. Members should consider this approach.
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Thanks, Observer!
:)
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One example (mine) of how we can distribute the NORD Request for Proposal:
On Feb 27, 2018, at 2:13 PM, demografx wrote:
Dear Dr G, [my own large-city university-endocrinologist]
I hope you’re well.
I continue to benefit greatly from your treatment plan that I implemented with you about 8 years ago.
Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?
I’ve attached a $31,000 grant description which I would hope you can pass along to your colleagues.
Best wishes,
demografx
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
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Observer made an excellent suggestion:
Dr Goldmeier in London.
I think 1-2 guys here visited him.
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Observer made an excellent suggestion:
Dr Goldmeier in London.
I think 1-2 forum members here visited him in London.
To all: feel free to use this email as a “template” to send to your own doctor or researcher
Subject: $31,000 Grant to study POIS
On Feb 28, 2018, at 6:41 PM, demo wrote:
Dear Dr Goldmeier,
I hope you’re well. I have been moderating POIS forums for 10 years.
You and I chatted briefly via email, then I think one or two of our members visited with you at your office.
Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?
I’ve attached a $31,000 grant description which I would hope you can review and/or pass along to your colleagues.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
Best wishes,
Demografx
Administrator
POISCenter.com
ps - please visit our forum!
http://www.poiscenter.com/forums/index.php
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Hi everyone!
I am leaving today for vacations, in Riviera Maya, Mexico and will be back on March 12. So, don't be surprised if I do not post on the forum till then.
Some sun and heat will be greatly appreciated - winter has been very harsh this year in Canada !
Hasta luego, amigos! :)
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Best wishes for a beautiful & restful retreat, Quantum.
You deserve it!
:) :)
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Hi everyone.
Any thoughts about sending out an email to your doc and/or researcher to expedite finding our next POIS consultant?
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just curious, is the school in new orleans not interested.
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CP2, Quantum can answer that when he returns from Mexico.
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what is RFP ? Thanks.
Request For Proposals, e.g., NORD has issued an RFP for POIS, sent to all doctors, institutions, etc., who might possibly study POIS. The RFP is to study POIS with payment (our own funds that we raised) up to $31,000.
b_jim, our full POISCenter RFP is shown in the link below.
From my previous post:
============================================================
Therefore...*please* send this link below to a doctor you trust and/or to a researcher you can contact who you think would be a good candidate to study POIS:
RFP: (NORD’s Request for Proposal)
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
Many thanks and best wishes to us all!
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Guys today I had an O while I am taking two SSRI antidepressants, the O was particularly intense but the POIS was so intense that for the first time I have experienced joint pain, before today I had only cognitive symptoms apart from itchy eyes, I am 90% sure is for the POIS and not the medications, so with a stronger orgasm there are stronger symptoms?
I have chronic depression and anxiety and with POIS they become more problematic, maybe they are chronic because of POIS, if I stay in abstinence I feel better but also too much repression is bad.
Stay strong!
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Hi everyone.
Does anyone else have thoughts, questions, comments or ideas about sending out an email with the link directly below to your doctor and/or your favorite researcher to expedite finding our next POIS research team?
https://tinyurl.com/y96dnkmq
Please post your thoughts here.
Remember, Y O U are needed. We are only 4 admins/mods here. We can’t do it all ourselves. If just 4 of you send out 1-2 emails, it’s very, very simple - - that *doubles* our chances of finding our new POIS Researcher - - sooner rather than later!
It’s also...Y O U R money (thanks to all the wonderful contributing forum members) that resulted in our being able to do this important POIS Research.
Everyone, it’s Y O U R $31,000. Put it to work for your own POIS. Let’s start curing POIS with some competent *outside* professional research, guidance, & medical help!
Thank you!
All the best,
Demo
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Sure I have some thoughts.
Step 1) Let a few POIS patients explore some parameters and compare them.
Step 2) Find a Doctor who is willing to write a paper (hardest part).
Step 3) Democratically vote on poiscenter between members which parameters should be investigated for a large scale study.
Step 4) Compile a group of POIS patients
Step 5) Find a lab
Step 6) Organize testing
Step 7) The doctor in step 2 needs to translate the data into a scientific paper.
I do know 2 doctors who are into the POIS phenomena, Waldinger and Meinardi but I don't think they have time to write a paper. We don't necessary need a theory for POIS. Explore some parameters with a large group and perhaps we can associate one of them with POIS, I would take that approach. Most testkits are in the range of $1000-1500 at imd berlin.
Go to http://www.imd-berlin.de/labor.html and click at the right side on the letter ''I'' for example and select Interleukin-12p40 (interesting parameter btw). It says ''nur im Rahmen von klinischen Studien'' these are only practible for large clinical studies because you will need to buy complete testkits. So this is doable with 31k. Here are some prices for individual testing:
http://www.imd-berlin.de/fileadmin/user_upload/Anforderungsscheine/SI_Anforderung_IGEL.pdf
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Teriffic, Muon, thank you!
Our very first and most urgent step - “simple” but difficult - is to find a credentialed, reliable medical team who *wants* to apply for our grant.
It is totally NORD’s decision 1) who our next POIS research team will be, and 2) how the $31,000 is spent. It’s not our decision.
Our Grant RFP (link below) just needs more exposure:
https://tinyurl.com/y96dnkmq
So, everyone, let’s please send this RFP out, along with NORD, who sends out mass mailings.
RFP’s coming from *us* will, I think, add significantly. Quantum & I have already had that experience: if they (researchers) know us, had some experience with us, they just might get involved more quickly.
Thanks again, Muon, for your thoughtfulness!
Demo
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Here is a trick I would like to share if you want an easy way to see the latest posts on the forum using a RSS feed ( = a live bookmark, that upgrade itself regularly with the latest posts). Use the link below, and subscribe to it using your preferred apps ( note that I use Firefox as browser, and Firefox can handle RSS feed without having to add an apps) You can just copy and paste the link in the address bar, or simply click on it, and then subscribe, creating the bookmark wherever you want it :
http://poiscenter.com/forums/index.php?action=.xml;type=rss;limit=15
You can use the RSS link at the bottom of the forum home page, but it shows last five posts by default. Often, particularly on week end, there are more than 5 posts a day, so the RSS feed is useless then if it shows only the last 5 posts - you cannot see those before the last 5, that you have missed.
You can adjust my link above by changing the limit, so, for example, if you want to see the last 20 posts, use :
http://poiscenter.com/forums/index.php?action=.xml;type=rss;limit=20
To see more, just place a larger number after "limit=", and subscribe to the new feed you have created.
If you keep your browser history from last visit, you will automatically see what posts you haven't seen, because it shows in your RSS feed.
As an alternative, you can use the following link, but it does not show where to start from last time you came - you have to find it yourself what's the last message you have read:
http://poiscenter.com/forums/index.php/action=recent
I hope this will help you follow the forum activities easily :)
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I've found something else that helps my brain fog. It's a nootropic made by AOR called Ortho Mind. Reduced my fog by 90-100% and greatly improved cognition. Not sure why it took me so long to try nootropics. They are designed to improve cognition.
I'm beginning to think that I and many more people with these symptoms are not dealing with a semen allergy, and that the problem is not ejaculation. I think the problem is orgasm. I think the symptoms are mostly occurring from an imbalance in neurotransmitters stemming from the gigantic dopamine release that happens at the point of orgasm. Almost all of the symptoms that I've been experiencing coincide with those who are experiencing low dopamine levels. My research continues...
Take care and good luck.
did anyone else tried to reduce brainfogging by using nootropics?
I found that the supplement facts in Ortho Mind are different from another nootropics, how can I find similar product such as Ortho Mind? I want to buy something local so I want to explore more options.
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Quick Update:
Vitamin D3 proved to me as an Incredible relief for my physical fatigue symptoms, especially for my joints pain I barley feel the pain now after ejaculation. It doesn't 100% eliminates it but It does a fair relief
I use it minutes after O, I used it probably 20 times since I tried it It never failed me. I haven't tried it before O though.
I'm using Vitamin D-3 1000IU (two pills after O) from GNC.
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Quick Update:
Vitamin D3 proved to me as an Incredible relief for my physical fatigue symptoms, It doesn't 100% eliminates it but It does a fair relief
I use it minutes after O, I used it probably 20 times since I tried it It never failed me. I haven't tried it before O though.
I'm using Vitamin D-3 1000IU (two pills after O) from GNC.
Great, keep us updated with your experiments with vitamin D, Meshal!
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I see that some of the members saying that NE is a huge frustration. Personally since POIS started I trained myself to protect my gential from rubbing before going to bed (showlace or whatever that comforts you), you will litrally prevent it from rubbing thus there is no way you can get NE, It worked for me at least, I used to get NE usually, but now none.
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i would of course send an tip of grant email to any researcher here in sweden but i dont think there are any doctors here in sweden taking this seriously, yep its horrible
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i would of course send an tip of grant email to any researcher here in sweden but i dont think there are any doctors here in sweden taking this seriously, yep its horrible
Thanks for posting about the RFP, mike_sweden! :)
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Happy Easter and Passover, everyone!
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I would really like to help, but I don't know any of them :-X
Maybe only to check if there is some research team in my country.
Demo since you 1st time posted suh a post, it is puzzling me a lot, but I still have no idea how to contribute
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...I still have no idea how to contribute.
Spartak, you’re contributing mightily just by posting and keeping the forum alive!
$ donation$ are suspended, for now.
Let’s all just keep thinking - - along with NORD, our POIS Grant Administrator - - to whom we might send the invitation to study POIS.
We can offer up to the $31,000 already raised by POISCenter members!
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
If any forum member would rather someone else send an e-mail (from me or another admin/moderator) please just post your idea - here, at this thread - as to *who* might be good for us to send to (please try to provide the e-mail address of the doctor or researcher whom you recommend).
Or, if you prefer, you can also send your recommendation by PM (private message) to myself, or Quantum, or Observer, or COLM.
Thank you all for making this a STRONG rare disorder forum!
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I see that some of the members saying that NE is a huge frustration. Personally since POIS started I trained myself to protect my gential from rubbing before going to bed (showlace or whatever that comforts you), you will litrally prevent it from rubbing thus there is no way you can get NE, It worked for me at least, I used to get NE usually, but now none.
I would love to update on this
Don't use this stupid method, I just got NE in the worst time possible while using the desperate method. heck I have to stop my overseas studying because of this very NE.
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I see that some of the members saying that NE is a huge frustration. Personally since POIS started I trained myself to protect my gential from rubbing before going to bed (showlace or whatever that comforts you), you will litrally prevent it from rubbing thus there is no way you can get NE, It worked for me at least, I used to get NE usually, but now none.
I would love to update on this
Don't use this stupid method, I just got NE in the worst time possible while using the desperate method. heck I have to stop my overseas studying because of this very NE.
Hi Meshal,
Sorry to hear that POIS is a real hindrance for your studying.
About NE, do you keep some pack or some anti-POIS supplements ready, on your bedside table, with some water, in order to take as soon as you realize that you had a NE?
I do keep a pack, always, on my bedside, with water, and taking it when I have a NE helps to lower the symptoms I would get from the NE. I am now quite use to do that, and have always water with a pre-pack, all ready on my bedside. My mind is sort of use to this routine now, because I usually wake up after having a NE, and I then take my pack right away, and I get up to wash myself and change cloths, and urinate, too, to rinse out any semen leftover, then I go back to sleep. ( I urinate because the exact reason why ejaculation triggers POIS is not known, and semen contact somewhere in the urethra cannot be ruled out with current knowledge about POIS, so this is a "security measure". If POIS is triggered by neurologic/neurotransmitter unbalance, this would prove to be useless, but for now, we don't know, so I do it, because it does not cause me any problem to urinate after a NE.)
POIS symptoms are significantly lower for me if I take my pack after a NE, than if I don't. So, for example, if you have some anti-POIS you know are good for helping you, whatever it is ( anti-inflammatory, antihistamines, natural products, ....) , i suggest you have a dose fo them ready with some water on your bedside, every day, in order to take it as soon as you know you had a NE. This could help you a lot with your problem of POIS interfering with your studying.
I hope this will help a bit, Meshal.
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I already prepared an email to a lot of doctors in my country...
Thank you very much, Meshal!!
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To all: feel free to use this email as a “template” to send to your own doctor or to your favorite researcher!
Subject: $31,000 Grant to study POIS
On Feb 28, 2018, at 6:41 PM, demografx wrote:
Dear Dr Goldmeier,
I hope you’re well. I have been moderating POIS forums for 10 years.
You and I chatted briefly via email, then I think one or two of our members visited with you at your office.
Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?
I’ve attached our $31,000 grant description which I would hope you can review and/or pass along to your colleagues.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
Best wishes,
Demografx
Administrator
POISCenter.com
ps - please visit our forum!
http://www.poiscenter.com/forums/index.php
-
I see that some of the members saying that NE is a huge frustration. Personally since POIS started I trained myself to protect my gential from rubbing before going to bed (showlace or whatever that comforts you), you will litrally prevent it from rubbing thus there is no way you can get NE, It worked for me at least, I used to get NE usually, but now none.
I would love to update on this
Don't use this stupid method, I just got NE in the worst time possible while using the desperate method. heck I have to stop my overseas studying because of this very NE.
Hi Meshal,
Sorry to hear that POIS is a real hindrance for your studying.
About NE, do you keep some pack or some anti-POIS supplements ready, on your bedside table, with some water, in order to take as soon as you realize that you had a NE?
I do keep a pack, always, on my bedside, with water, and taking it when I have a NE helps to lower the symptoms I would get from the NE. I am now quite use to do that, and have always water with a pre-pack, all ready on my bedside. My mind is sort of use to this routine now, because I usually wake up after having a NE, and I then take my pack right away, and I get up to wash myself and change cloths, and urinate, too, to rinse out any semen leftover, then I go back to sleep. ( I urinate because the exact reason why ejaculation triggers POIS is not known, and semen contact somewhere in the urethra cannot be ruled out with current knowledge about POIS, so this is a "security measure". If POIS is triggered by neurologic/neurotransmitter unbalance, this would prove to be useless, but for now, we don't know, so I do it, because it does not cause me any problem to urinate after a NE.)
POIS symptoms are significantly lower for me if I take my pack after a NE, than if I don't. So, for example, if you have some anti-POIS you know are good for helping you, whatever it is ( anti-inflammatory, antihistamines, natural products, ....) , i suggest you have a dose fo them ready with some water on your bedside, every day, in order to take it as soon as you know you had a NE. This could help you a lot with your problem of POIS interfering with your studying.
I hope this will help a bit, Meshal.
Hey, I use beets and vitamin D3 for now. But when I come to think of it I don't take them until after day or two since I had NE.
Because I was barely able to move after the NE, I tend to delay taking them, maybe taking them as soon as I get the NE can lower the symptoms, I have to make this as a habit. thanks for the tip :D
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I've been thinking lately about the nature of the symptoms, how can they vanish in a period of time just like that? what's happening exactly for them to just fade away?
Is the body building vitamins again? I just don't get it. Is there an scientific explanation for this?
I'm thinking maybe there is a disease out there that does have symptoms that are probably different symptoms, but they might fade away just with the same way our symptoms fade away, maybe something could be learned from the answer to this question.
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I'm thinking maybe there is a disease out there that does have symptoms that are probably different symptoms, but they might fade away just with the same way our symptoms fade away, maybe something could be learned from the answer to this question.
Meshal check out this thing called "PFS" post finasteride syndrome on another forum called hackstasis. https://hackstasis.com
Some reckon they could be similar symptoms due to finasteride (propecia) which is similar to that of overmasturbation....the admin there (gbolduev) reckons it results in progesterone hypersensitivity
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Following is a private message posted here with fernab’s permission.
I am searching a good Dr in my country. But not very Lucky for the moment. Saw there is a RFP doc. If I finally find one Who is good enough and interested in investigating. Will let you know.
Hi, fernab!
Thank you for your interest in helping to distribute our RFP!
Best regards,
Demo
cc: POISCenter Admin Team
UPDATE: Forum Member fernab emailed our RFP to an immunologist who showed interest!
Any forum member can (please :) ) send this RFP out to your own doctor and/or researchers:
https://tinyurl.com/y96dnkmq
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Following is a private message posted here with fernab’s permission.
I am searching a good Dr in my country. But not very Lucky for the moment. Saw there is a RFP doc. If I finally find one Who is good enough and interested in investigating. Will let you know.
Hi, fernab!
Thank you for your interest in helping to distribute our RFP!
Best regards,
Demo
cc: POISCenter Admin Team
UPDATE: Forum Member fernab emailed our RFP to an immunologist who showed interest!
Any forum member can (please :) ) send this RFP out to your doctor:
https://tinyurl.com/y96dnkmq
Excellent demo, everyone who is going to a doctor right now should consider to send the RFP to him/her.
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...everyone who is going to a doctor right now should consider to send the RFP to him/her.
Yes! Thank you, Observer!
RFP link to send to YOUR doctor:
https://tinyurl.com/y96dnkmq
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Today NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding. After May 7, NORD will evaluate the RFP response to determine if the call should remain open.
Priority will be given to proposals submitted by May 7
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Today NORD will be sending out another reminder about their current grant opportunities. They will be suggesting that interested researchers submit their application materials to NORD by May 7 in order to ensure that they are considered for the funding. After May 7, NORD will evaluate the RFP response to determine if the call should remain open.
Priority will be given to proposals submitted by May 7
Here is the link to NORD’s email about the reminder:
https://conta.cc/2K7jLlr
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Does anyone know how i can go about checking if pois is doing permanent damage to the brain.
I have done a normal mri scan and nothing was found. I am curious if there is special mri. Do MS patients do a special mri or normal one.
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I sent this out today to my GP (who is influential. He was the Chief Medical Officer at the Olympics Games)
Dear Dr G,
I hope you’re well.
I continue to benefit greatly from your treatment plan that I implemented with you about 8 years ago.
Perhaps you can help me with furthering the research on Post-Orgasmic Illness Syndrome?
I’ve attached a $31,000 grant description which I would hope you can pass along to your colleagues.
Any feedback from you, Dr G, to help this along would be GREATLY appreciated!
Best wishes,
[demo]
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx
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I did send out emails to multiple doctors but got no response from any of them. Well...at least I tried.
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The research department I contacted last week on a medicine university told me today, that after analysing the information (RFP). They will not apply because they research for rare diseases related with the mutation of only one gene (monogenetic deseas). According to them these diseases represent the 80% of all rare diseases. And POIS is not due to a gene mutation.
Seems finding a researcher it's not going to be easy...
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And POIS is not due to a gene mutation.
We don't even know what POIS is that's the whole point of research LOL! Without doing any research they already seem to know that POIS is not due to a gene mutation :o
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I did send out emails to multiple doctors but got no response from any of them. Well...at least I tried.
Thank you, Muon!
But don’t give up hope. The doctors who did not respond to you might still respond to NORD! That happened to me once. I was very pleasantly surprised.
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The research department I contacted last week on a medicine university told me today, that after analysing the information (RFP). They will not apply because they research for rare diseases related with the mutation of only one gene (monogenetic deseas). According to them these diseases represent the 80% of all rare diseases. And POIS is not due to a gene mutation.
Seems finding a researcher it's not going to be easy...
Thank you, fernab!
You’re right, it’s not easy! I’ve had difficulties for 10 years. That’s why we are asking everyone here to help us...and NORD.
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And POIS is not due to a gene mutation.
We don't even know what POIS is that's the whole point of research LOL! Without doing any research they already seem to know that POIS is not due to a gene mutation :o
You are right Moun, we still don't know if it is due to a gene mutation. A research should be done first. But they said no. Seems It is only a pretext. This leads me to think if there is another reason behind, for example, It's not politically correct
to say the real thing. I don't know...
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And POIS is not due to a gene mutation.
We don't even know what POIS is that's the whole point of research LOL! Without doing any research they already seem to know that POIS is not due to a gene mutation :o
You are right Moun, we still don't know if it is due to a gene mutation. A research should be done first. But they said no. Seems It is only a pretext. This leads me to think if there is another reason behind, for example, It's not politically correct
to say the real thing. I don't know...
Hi fernab, and everyone,
About those reasons that may not be politically correct, here is my understanding of how medical research works.
I think there are 2 main motivations behind the choice of what a medical research team choose to work on:
1- Money (attracting money from investors, with good perspective on the return on investment), because you need a lot of funding to support research.
2- Scientific recognition through the publication of a breakthrough article
POIS has obviously no chance for the first ( big money), we are too few for being a "good investment", and even if a drug or treatment was found, no chance for it to become a blockbuster and bring billions of dollars in sales per year, like it does if you find a new treatment for diabetes, asthma, hypercholesterolemia, cardio-vascular diseases, or the like. If you had 500 millions to invest in medical research, hoping to get profits in return, would you invest in diabetes research or in POIS research? hehehe......
The chances for the second ( scientific recognition following a breakthrough), considering that not much is known yet about POIS, are moderate to low. The researchers have no idea what to do or try first, and the risk of losing time and not making any advance or breakthrough, even on the understanding of POIS, are high. So, they may prefer a safer bet to invest their time in. However, what is very good for us is that other sexual health problems have been so much researched that any breakthrough is hard to achieve in those topics, so, some teams that allows a small percentage of their time to some risky research topics will one day or another accept the POIS challenge. A team will hardly come up with a breakthrough about premature ejaculation, since thousands and thousands of books and articles have been published on it. You may then look for uncharted territories....et voilà, why not POIS !
So, from my point of view, our better chances come from:
1- A specialized team in men sexual health that has some place in its busy schedule for a more risky venture....maybe by an undergraduate or graduate student looking for an interesting topic that could bring some attention to his work and help launch his career, mentored by researcher that already knows about POIS ( or something along these lines).
2- We can also hope that Dr Waldinger or another researcher that have already published on POIS will come up with a breakthrough article.
3- Another great opportunity would be a clinical researcher who have POIS himself, or have a close relative who is a POIS sufferer, and invest a lot of time in research for this rare syndrome. What comes to my mind is the example of Dr Jacob O Levitt, who has hypokalemic periodic paralysis, and who made great contributions to the advancement of the treatment of this rare disorder ( see https://translational-medicine.biomedcentral.com/articles/10.1186/1479-5876-6-18, and the website of the foundation he has created at https://www.periodicparalysis.org/site/ )
So, we have our chances. the important thing is not to be too naive, and think that the medical community will rush to help us. We already know and feel it is not the case... Having realistic expectations is advisable, as it protect us from becoming too frustrated about how slow the POIS research is going.
Till a major POIS study will be published, we will see POIS reviews articles ( not so risky, just a summary of what have been done so far), and case reports, which are not a breakthrough, and are not so demanding in term of time, and usually present only one case, or a few, and state what have been observed, what have been tried, and the results obtained. That's positive, but not enough.
I do hope our grant offer will motivate some researcher to invest some time in clarifying what POIS is about. Once a path finding research is done on POIS, then other teams will be more likely to invest time in POIS, based on what have been found in that previous study.
What I understand from the answer of the team you have contacted, stating that POIS is not caused by a single genetic mutation, is : " it is much safer for us to work on a disease that has already been proven to be linked to a single genetic mutation, so that we will not lose our (precious) time trying to figure out what causes you rare disorder". Just my opinion, here, but I do believe it is approximately what happened. In my contacts with many research teams, I had once an "accidental" proof that medical research teams, at least the big ones in universities, have a legal/financial team analyzing each project request, and giving advice to the research team about whether or not they should go on with a particular research project. No doubt, medical research is a very well organized business.
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Thank you Quantum, for your good and precise answer.
I agree with you. We also may think that there are still POIS sufferers that they are not aware they are. Just the same it has happend to many of us. After 4 years and a half I recentlly discovered the illness I have is POIS. We all know that almost all doctors don't have any idea about it. And this represents also an added problem to this complex illness. Because maybe we could be a bigger number of people If doctors were able to at least identify more posible POIS sufferers.
Not only to help the number of sufferers becomes bigger. That maybe would revert in more posibilities that it becomes interesting on being researched. But also to contribute in the medical and cientific community to be known.
I think, It is very important for us to spread the word to as many doctors as we can. And people in general. As you said, you never know how close is a researcher to a POIS sufferer.
And also, we maybe could take advantage of the fact that sex sells. It is something interesting to some peolpe when they discover this problem exist. Of course, you have to take care of your privacy. But, this illness is linked directlly to sex.
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I think, It is very important for us to spread the word to as many doctors as we can.
Yes!!
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Hi All,
Continuing with this I recently contacted with a biomedical research laboratory. And sent them the RFP. Initially they showed me to be very interested. We will see with some more time if they really are...
And I also gave it to an endocrine I visited two days ago.
Hoping one day we have a good surprise....
By the way... We are now on May 24. Is the candidacy to sign up still open? No deadline defined??
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Thank you, fernab!
We hope to have information soon as to the search status.
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Ok Demo. Thanks. And about the deadline? Any date is defined as deadline? They are asking me on the biomedical research Laboratory...
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June 8. Thank you!
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I'm a newbie here. You guys do a great job! I didn't know there was a name for what I have experienced for years, and grateful a group like this exists. I'm not really used to this format though, with disparate topics in a variety of folders. I'm wondering if you have more of an interactive chat hiding here somewhere, or if you know of any?
I also have had CFS for over thirty years, and CIRS, and other infections. My experience is that these different manifestations seem to be connected at some root level. I know people with serious mitochondrial disease who experience similar things. I have so many questions and thoughts, but I'm not sure where to share them. I also have some benefit as a lay researcher for years and have taken training with Dr. Ben Lynch and others.
There are no simple answers, but I'm happy to add what I can, of value to the dialogue. Thanks for reading!
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I'm a newbie here. You guys do a great job! I didn't know there was a name for what I have experienced for years, and grateful a group like this exists. I'm not really used to this format though, with disparate topics in a variety of folders. I'm wondering if you have more of an interactive chat hiding here somewhere, or if you know of any?
I also have had CFS for over thirty years, and CIRS, and other infections. My experience is that these different manifestations seem to be connected at some root level. I know people with serious mitochondrial disease who experience similar things. I have so many questions and thoughts, but I'm not sure where to share them. I also have some benefit as a lay researcher for years and have taken training with Dr. Ben Lynch and others.
There are no simple answers, but I'm happy to add what I can, of value to the dialogue. Thanks for reading!
Hi Pbear,
Thanks for your good words, and welcome to the forum!
There is no chat on the forum, but take the time to explore the different forum boards, and you will find plenty of good information. On the forum front page, you will find a search box, on top right, so you can search for specific terms on the forum.
You can also use this link to create a RSS feed and track the 25 latest posts: http://poiscenter.com/forums/index.php?action=.xml;type=rss;limit=25
For your questions and suggestions, I suggest you open your own thread, and ask there your questions, and share what you have found through your personal research ( If you do not know in which board to start it, put it in the alternative Causes and Treatment board, http://poiscenter.com/forums/index.php?board=7.0 )
Take your time and look around, it may take you weeks, if not months, to get familiar with all the information that is available here :)
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(https://sep.yimg.com/ay/yhst-94387763560218/your-sperm-card-20.jpg)
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Ok Demo. Thanks. And about the deadline? Any date is defined as deadline? They are asking me on the biomedical research Laboratory...
I mentioned June 8, but I can ask NORD for an extension if you wish!
Let me know. Post here or PM me.
Regards
Demo
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This lucky man got pois in 0.33sec video.
https://www.youtube.com/watch?v=NOhyduxTOGo
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for the past 2 days I tried VOLTAREN RETARD 100mg, Just had three O's in a row, had a light fatugie for a couple of minutes and now I'm jumping like a little baby with no symptoms at all, It's been 6 hours since my last O and I haven't slept yet. I have a feeling POIS will strike back after I sleep, but something fishy is happening, POIS always starts minutes after O but this time I don't know what happend. could be a placebo but we'll see in a couple of days
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for the past 2 days I tried VOLTAREN RETARD 100mg, Just had three O's in a row, had a light fatugie for a couple of minutes and now I'm jumping like a little baby with no symptoms at all, It's been 6 hours since my last O and I haven't slept yet. I have a feeling POIS will strike back after I sleep, but something fishy is happening, POIS always starts minutes after O but this time I don't know what happend. could be a placebo but we'll see in a couple of days
Hi Meshal,
I am glad you have found a way to relief your POIS symptoms. I hope you will make follow-ups about how it goes, not only for this time, but in the coming weeks and month, so we know if this will be for you a stable relief method in the long run. If not, please give us some feedback anyway, but I wish you it will. There are other case of members who have relief with anti-inflammatory drugs, and I would be glad to ass you to these in my chart :)
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The last years I have far less throat and nose problems. 5 years ago my tonsils were removed. That helped me a lot to reduce throat issues after POIS. I think I have less nose problems because the last years I have a policy of being sexual py active only max 1 or 2 times a week. Before when I was sexually excited I couldn’t control myself. So sometimes I had sex/mb 2 days in a row. So if you have a lot of problems with your throat because of POIS it’ best to remove your tonsils. Even when you are older. I was 36 years old when they did the operation.
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One of the worst POIS episodes *ever* yesterday because I took a hot shower some time after POIS onset! I’ve written here before about it. Maybe now I’ll learn my lesson.
Don’t know why, but......it was pure torture! :(
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Hot showers help me a lot. When it’s late and I am finished I used to clean only a bit and go to sleep. I would take the shower the next morning. Since I forced myself to shower directly after sex I have maybe 10% less symptoms.
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The last two years my POIS has changed. I don’t have throat and nose problems anymore. That was my main problem. Now my main problem is UTI/bladder/prostate/urithitis. The only thing that has changed is that my vitamin D level has increased in this period from level 18 to 160.
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One of the worst POIS episodes *ever* experienced yesterday was because I took a
hot shower some time after POIS onset! I’ve written here before about it. Maybe now I’ll learn my lesson.
Don’t know why, but......it was pure torture! :(
I’m glad that Vandemolen doesn’t have the same problem
But others have mentioned similar experiences to mine.
Does anyone else who has problems with
hot showers or baths care to share your experiences?
Also, does anyone have any theories or educated guesses as to why this happens?
Many Thanks!
Demo
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For those of you who have been following some details of my 10 years’ successful TRT treatment for my testosterone deficiency, which has resulted in my greatly improved POIS symptoms...here are my latest lab results:
https://poiscenter.com/forums/index.php?topic=17.msg25400#msg25400
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A convenient way to see the most recent posts.
I bookmarked this link & use it frequently.
https://poiscenter.com/forums/index.php?action=recent
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Relatively :)
(http://i858.photobucket.com/albums/ab143/demografx/910F5C1A-9EAE-424C-A028-4BC59750AD3F.jpg)
"When an Orgasm Can Destroy Your Life" -- thanks to "Quantum" and other POISCenter FORUM Members!!
https://melmagazine.com/these-guys-will-do-anything-to-avoid-coming-279fc4eb1a8b?source=linkShare-898c3474bb43-1478806423
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IMPORTANT ANNOUNCEMENT
I just checked in with NORD (National Organization of Rare Disorders) - we're still on track!
NORD's MAC (Scientific & Medical Advisory Committee)
https://tinyurl.com/y86fwt4t
is now reviewing the full POIS proposals from Research Teams and they hope to announce our $31,000 POIS Research Grant awardee by the end of the year!
For more background info, see Quantum’s post:
https://poiscenter.com/forums/index.php?topic=2462.0
Thank you again, magnificent POIS donor$!
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Have a pleasant Thanksgiving Week!
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I wanted to bring to your attention that the forum has now 750 members :)
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Wow, thanks. Last I knew it was 600!
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Wow, thanks. Last I knew it was 600!
I'm disappointed by your comment Demo. I thought this thread was all about colored capital letters. :(
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Great news thanks!
IMPORTANT ANNOUNCEMENT
I just checked in with NORD (National Organization of Rare Disorders) - we're still on track!
NORD's MAC (Scientific & Medical Advisory Committee)
https://tinyurl.com/y86fwt4t
is now reviewing the full POIS proposals from Research Teams and they hope to announce our $31,000 POIS Research Grant awardee by the end of the year!
For more background info, see Quantum’s post:
https://poiscenter.com/forums/index.php?topic=2462.0
Thank you again, magnificent POIS donor$!
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Thank you, Limejuice!
And thank you for keeping the message alive! :) :)
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Wow, thanks. Last I knew it was 600!
I'm disappointed by your comment Demo. I thought this thread was all about colored capital letters. :(
;D ;D ;D
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Candida article FYI
https://sciencebasedmedicine.org/candida-and-fake-illnesses/
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Candida article FYI
https://sciencebasedmedicine.org/candida-and-fake-illnesses/
Yes fungus in the mouth and vagina are recognized by regular doctors. Candida in the blood is not recognized by the regular doctors. Fact is that I and a few other POIS-patienst have a white tongue. In my case because of POIS and the use of antibiotics. Minoconazole helps me against the fungus on my tongue and mouth.
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Candida article FYI
https://sciencebasedmedicine.org/candida-and-fake-illnesses/
Yes fungus in the mouth and vagina are recognized by regular doctors. Candida in the blood is not recognized by the regular doctors. Fact is that I and a few other POIS-patienst have a white tongue. In my case because of POIS and the use of antibiotics. Minoconazole helps me against the fungus on my tongue and mouth.
Just some food for thought:
https://sciencebasedmedicine.org/candida-and-fake-illnesses/
https://rationalwiki.org/wiki/Candida
https://www.nhs.uk/conditions/thrush-in-men-and-women/
----
I am not saying that we should rule out this cause for POIS, but I think we should be wary of people offering miraculous treatments for this condition. Candida could only be a feasible option is our immune system is compromised in some way.
We should trust in mainstream medicine (Well, of course we can leave some room for criticism regarding the ethical part or even the greedy one but that's another matter of discussion), and above all, in science.
I encourage all of you to continue sharing those treatments that have worked until a proper research starts.
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Candida article FYI
https://sciencebasedmedicine.org/candida-and-fake-illnesses/
Yes fungus in the mouth and vagina are recognized by regular doctors. Candida in the blood is not recognized by the regular doctors. Fact is that I and a few other POIS-patienst have a white tongue. In my case because of POIS and the use of antibiotics. Minoconazole helps me against the fungus on my tongue and mouth.
Just some food for thought:
https://sciencebasedmedicine.org/candida-and-fake-illnesses/
https://rationalwiki.org/wiki/Candida
https://www.nhs.uk/conditions/thrush-in-men-and-women/
----
I am not saying that we should rule out this cause for POIS, but I think we should be wary of people offering miraculous treatments for this condition. Candida could only be a feasible option if our immune system is compromised in some way.
We should trust in mainstream medicine (Well, of course we can leave some room for criticism regarding the ethical part or even the greedy one but that's another matter of discussion), and above all, in science.
I encourage all of you to continue sharing those treatments that have worked until a proper research starts.
Excellent post, Observer!
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I CANNOT WAIT TILL THE NEW YEAR 2019: b_jim WILL BE WITH OUR POIS FORUMS FOR...
(https://www.deltageeks.net/wp-content/uploads/2017/02/12-years-anniversary.jpg)
THANK YOU, b_jim for your excellent service - - analyzing hundreds of POIS Cases on the Internet!!
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I have already filled the POIS survey, have you done it?
Yes!
Demo
Let’s all drive up the number of Yes’s!!!
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Thanks !
I'm taking taurine since 2014 :)
Our job was to search and count the Pois sufferers we found on the internet :
https://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009
440 cases, but i think we are at least at 1500 cases now !
Amazing, b_jim!
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The hazards of self-diagnosis on the Internet
https://tinyurl.com/y9h3lmjw
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I said he should go to a doctor.... But ok, next time I will say he might have candida and let a doctor do a check.
No! Read the rules again. Talk about YOUR experience only, not what someone else could/should do...or what condition he might have; that is the role of a medical professional!
https://poiscenter.com/forums/index.php?topic=1.msg25961#msg25961
Ok. I just wanted to help him. But I will be more carefull the next time.
Thank you very much!
Demo
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Just completed the survey. thx demo
Thank you, Limejuice!
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Yes, I agree with you, LPM, let’s continue this Great Effort, so...
Please do FILL OUT THE POISCENTER SURVEY now. The sooner the better :)
https://tinyurl.com/y9uj8mpa
Quote from Quantum:
“Again, the link for the survey is:
https://tinyurl.com/y9uj8mpa
You register with a Google mail address, so you will be able to save and complete later if you do not have time to go through.
Thanks !
Quantum “
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NORD POIS Research Grant news:
NORD is still planning to have the final $31,000 POISCenter-funded POIS Research Grant awardee decision by the end of the month, but it is of course possible that the timeline will shift into January.
We are close!
Best wishes for the Holidays, everyone!
Demo
See Quantum’s post for more info:
https://tinyurl.com/yd6jwc63
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Just want to note that I am not a Dr and any advice or information I give about what I do only pertains to my experience. Everyone is different and different protocols and supplements may effect someone else differently. You are responsible for what you do with my information and should research and/or ask a qualified medical professional.
I’m re-quoting Limejuice’s excellent perspective above.
It is very timely to our recent discussions about what one can and should say to another forum member about medical diagnosis and treatment.
Even if someone *is* a doctor (M.D.), medical diagnosis on the internet (or telephone) is inappropriate and/or unethical in my opinion. And it might even be illegal.
I believe that face-to-face consultation - in person - is the only way to diagnose medical concerns. Body language, feelings, intonations, reactions and facial expression cannot be seen without in-person counsel
Medicine? Not on the telephone. Not on the internet. For anyone.
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for the past 2 days I tried VOLTAREN RETARD 100mg, Just had three O's in a row, had a light fatugie for a couple of minutes and now I'm jumping like a little baby with no symptoms at all, It's been 6 hours since my last O and I haven't slept yet. I have a feeling POIS will strike back after I sleep, but something fishy is happening, POIS always starts minutes after O but this time I don't know what happend. could be a placebo but we'll see in a couple of days
Hi Meshal, any update? Do you still have relief with Voltaren ?
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Just want to note that I am not a Dr and any advice or information I give about what I do only pertains to my experience. Everyone is different and different protocols and supplements may effect someone else differently. You are responsible for what you do with my information and should research and/or ask a qualified medical professional.
I’m re-quoting Limejuice’s excellent perspective above.
It is very timely to our recent discussions about what one can and should say to another forum member about medical diagnosis and treatment.
Even if someone *is* a doctor (M.D.), medical diagnosis on the internet (or telephone) is inappropriate and/or unethical in my opinion. And it might even be illegal.
I believe that face-to-face consultation - in person - is the only way to diagnose medical concerns. Body language, facial expression, verbal intonation, etc., cannot be seen without in-person counsel.
Medicine? Not on the telephone. Not on the internet. For anyone.
I borrowed the idea from Quantum's posting signature.
Don't want to lose Quantum above question to Meshal...
Hi Meshal, any update with Voltaren?
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Just received “Congratulations to all of us from NORD for reaching 750+ Members!!”
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Excellent medical advice demo, I would also like to wish the forum users happy holidays and a great new year!
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I would like to wish the forum users happy holidays and a great new year!
(https://m.riflepaperco.com/media/catalog/product/cache/1/thumbnail/1170x1248/fb193eecb19491ee2d70d1d38e002e96/g/t/gtdx05-happy-holidays-01.jpg)
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Excellent medical advice demo
Thanks, Observer!
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I would like to wish the forum users happy holidays and a great new year!
(https://m.riflepaperco.com/media/catalog/product/cache/1/thumbnail/1170x1248/fb193eecb19491ee2d70d1d38e002e96/g/t/gtdx05-happy-holidays-01.jpg)
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Merry Christmas to all of you who celebrate.
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(https://i.pinimg.com/originals/b7/09/0f/b7090f7aafd788232d92acabbfc55c30.gif)
From the administrative/moderator team.
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Thanks demo, I hope we are having a great holiday/christmas time!
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In the eighties Aids become a well known disease thanks to Freddy Mercury and Magic Johnson. In 2019 we need a celebrity with POIS. So if you are a member with a nickname and your real name is Brad Pitt or LeBron James please step forward. I wish you a happy Newyear and a healthy 2019.
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Happy new year !!
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Wishing to all of us:
POIS progress in 2019!!
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Wishing to all of us:
POIS progress in 2019!!
I am very optimistic about having progress with POIS when it comes to the research and hopefully a biochemist I recently contacted said he'll do a cultured test of his semen mixed with bis blood. I'm still pessimistic about finding an actual solution to the symptoms but we'll see.
In the beginning of 2018 I promised myself that I will solve POIS. I didn't find a remedy yet but I feel reaching the Mast Cell connection was perhaps the solution I promised my self. I don't want to promise myself that I will find a remedy because I honestly don't think my POIS is ever going to be solved, but I will keep working for it. Hope everyone follow my steps and the steps of others like Nanna, Quantum, Demo and others in finding their own solutions by doing their own research. Muon have been working very hard on that so I wish that sour bastard that he finds relief with all of his effort :D
Thanks again for everyone in this community and have a jolly new year!
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Thank you, Nas.
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What Nas and Vandemolen said.
Happy new year.
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Hapy new year, pois free, helty, full pockets of mony and to susces
all yours goals in life.
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Try searching for keywords 'sex', 'orgasm' on the DINET forum. Many topics will come up.
https://www.dinet.org/forums/forum/1-dysautonomia-discussion/
Made one myself:
https://www.dinet.org/forums/topic/29961-post-orgasmic-illness-syndrome-pois-and-dysautonomia/
And necro'd some threads:
https://www.dinet.org/forums/topic/27236-vagus-nerve-operating-at-50/
https://www.dinet.org/forums/topic/22648-embarrassing-event-triggering-major-relapse-and-arrhythmias/
https://www.dinet.org/forums/topic/14427-anyone-else-get-really-ill-from-sexual-activity/
I bet there are some people with POIS present on that forum.
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this girl thinks drinking more water is good for CFS
https://www.youtube.com/watch?v=vsP8ICJ77AI
i would agree that one of my most common problem is noticing i have not been drinking enough water
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I bet there are some people with POIS present on that forum.
https://www.dinet.org/forums
Thanks, Muon. Maybe b_jim can find more POIS cases there for his global compilation.
For more information on Muon’s thread (nice job!):
https://poiscenter.com/forums/index.php?topic=2872.0
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In the eighties Aids become a well known disease thanks to Freddy Mercury and Magic Johnson. In 2019 we need a celebrity with POIS. So if you are a member with a nickname and your real name is Brad Pitt or LeBron James please step forward. I wish you a happy Newyear and a healthy 2019.
We need to revive Freddy Mercury and give him Pois ASAP!
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In the eighties Aids become a well known disease thanks to Freddy Mercury and Magic Johnson. In 2019 we need a celebrity with POIS. So if you are a member with a nickname and your real name is Brad Pitt or LeBron James please step forward. I wish you a happy Newyear and a healthy 2019.
We need to revive Freddy Mercury and give him Pois ASAP!
Idk, I can't see a celebrity having POIS. We're too awkward to be celebrities.
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In the eighties Aids become a well known disease thanks to Freddy Mercury and Magic Johnson. In 2019 we need a celebrity with POIS. So if you are a member with a nickname and your real name is Brad Pitt or LeBron James please step forward. I wish you a happy Newyear and a healthy 2019.
We need to revive Freddy Mercury and give him Pois ASAP!
;D ;D ;D
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In the eighties Aids become a well known disease thanks to Freddy Mercury and Magic Johnson. In 2019 we need a celebrity with POIS. So if you are a member with a nickname and your real name is Brad Pitt or LeBron James please step forward. I wish you a happy Newyear and a healthy 2019.
We need to revive Freddy Mercury and give him Pois ASAP!
Idk, I can't see a celebrity having POIS. We're too awkward to be celebrities.
Good point.
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(https://i.pinimg.com/originals/b7/09/0f/b7090f7aafd788232d92acabbfc55c30.gif)
From the administrative/moderator team.
ps - I just texted the above graphic to Dr Komisaruk,
our Vagus Nerve POIS Theorist, with a note,
“No, that’s not an orgasm.”
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LOL ;D
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CAREFUL POSTING - - to be reviewed/modified by admin/mod team and incorporated into Forum Rules & Regulations
Less-than-careful posting is something that is quite common. If it happens too often people will leave this forum or threads will not be read.
Potential POIS researchers and media/publicity outlets will be turned off.
Some members do it on a regular basis and will be given warnings. Members should maintain critical thinking all the time and use proper arguments to support their statements/claims. You can think out loud but should put it on the board in a way that it's clear from the context.
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FOR LOOKING UP ALL RECENT POSTS
If you haven’t done so already, please consider bookmarking this link. For easy access to the most recent posts across all threads:
https://poiscenter.com/forums/index.php?action=recent
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Any update on the NORD POIS research?
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They are suppose announce it this month not sure the exact date
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Thanks, CP2.
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My POIS Google Alerts have been quiet...until today.
From Google Alert -
Post Orgasmic Illness Syndrome POIS
https://www.huffpost.com/entry/surprising-things-that-happen-after-orgasm_n_5c3641a1e4b070b69ae052e4
From: demografx
Date: January 12, 2019 at 9:50:06 AM PST
To: kelsey.borresen@huffingtonpost.com
Subject: Your HuffPost article:
Post Orgasmic Illness Syndrome
Dear Kelsey,
Thank you for your Huffpost article! We very much need your kind of public awareness!
Please visit our forum:
POISCenter.com
We are starting major research this year on POIS.
Best regards,
demografx
POISCenter administrator
since 2007
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Mentioned in the article above:
Journal of the Royal Society of Medicine
Royal Society of Medicine Press
“Sneezing induced by sexual ideation or orgasm: an under-reported phenomenon”
https://www.ncbi.nlm.nih.gov/m/pubmed/19092028/
I *almost always* sneeze at POIS onset.
Does anyone else here sneeze like that? Theories? Clues? Autoimmune related?
At least in my case, I suspect it’s a serious clue!
ps - I wrote a letter to the author of this article, Dr Bhutta - - similar to the one I wrote to Kelsey above.
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Mentioned in the article above:
Journal of the Royal Society of Medicine
Royal Society of Medicine Press
“Sneezing induced by sexual ideation or orgasm: an under-reported phenomenon”
https://www.ncbi.nlm.nih.gov/m/pubmed/19092028/
I *almost always* sneeze at POIS onset.
Does anyone else here sneeze like that? Theories? Clues? Autoimmune related?
At least in my case, I suspect it’s a serious clue!
ps - I wrote a letter to the author of this article, Dr Bhutta - - similar to the one I wrote to Kelsey above.
Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.
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Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.
Do you think the vagus nerve could be involved in your POIS?
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Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.
Do you think the vagus nerve could be involved in your POIS?
I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.
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Very interesting, Nas!
You just made me re-think the “perfect wisdom” of the theory of Dr Komisaruk. I say “perfect wisdom” only because he seems at the forefront and has spent his career studying the science of orgasm. However, most of his published studies are in analyzing female orgasm. Maybe we’re completely different!
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However, most of his published studies are in analyzing female orgasm.
I also find it more interesting to analyze female orgasms though ::)
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However, most of his published studies are in analyzing female orgasm.
I also find it more interesting to analyze female orgasms though ::)
(https://cdn2.iconfinder.com/data/icons/facebook-ui-colored/48/JD-18-512.png)
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I *almost always* sneeze at POIS onset.
I also sneeze often with my first cup of coffee in the morning.
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Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.
Do you think the vagus nerve could be involved in your POIS?
I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.
I wonder if my POIS is hormonal.
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Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.
Do you think the vagus nerve could be involved in your POIS?
I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.
I wonder if my POIS is hormonal.
Potentially, according to Muon's Treg theory, some hormonal issues can lead to down regulations of Treg cells that contribute to non-self discrimination. The auto-immune reaction, it self, leads to systematic symptoms, how exactly I do not know and I think this matter needs some sort of investigation.
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Nah I don't sneeze, I mean, I never really notice it, maybe I'll pay more attention in the future. But overall the majority of what I suffer from is Neuropsychiatric.
Do you think the vagus nerve could be involved in your POIS?
I think what I have is inflammation in the CNS. I honestly don't fully understand how the vagus nerve can be at all related to POIS. What I think POIS is related to immune activity and potentially hormonal issue, but I'm not really sure about the latter.
I wonder if my POIS is hormonal.
Potentially, according to Muon's Treg theory, some hormonal issues can lead to down regulations of Treg cells that contribute to non-self discrimination. The auto-immune reaction, it self, leads to systematic symptoms, how exactly I do not know and I think this matter needs some sort of investigation.
Too bad we have limited influence on NORD researchers’ course of investigation.
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Wishing to all of us:
POIS progress in 2019!!
I inquired again re NORD status. Just heard back from them: it still “...looks good!” for January announcement of our new
POIS Research Team.
For newcomers:
https://tinyurl.com/y8ow7v8j
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Let's hope the researcher(s) will come up with something interesting. I will go complete bananas when they solely be doing IgE measurements. With other words I hope they do not kick in open doors.
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Let's hope the researcher(s) will come up with something interesting. I will go complete bananas when they solely be doing IgE measurements. With other words I hope they do not kick in open doors.
Exactly, I think this forum should have some contact with the team so we can at least suggest that they build up on Waldinger's findings, instead of starting from scartch or trying a random theory that is potentially unrelated to POIS. WE ARE IN A DIRE SITUATION, we don't have the luxury of time, so we hope the research would be relevant and constructive. I also whish the workers open mindedness. I don't want the research to be cancelled because " ewww, these men are masturbating, so gross...".
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Gentlemen, please slow down, you weren’t there when we made the difficult decision of hiring NORD and I don’t believe you donated and saw the agony of our ups and downs throughout this most difficult process.Those were excruciating times, but as a rare disorder we are still way ahead of 90% of most other rare disorders in bootstrap funding of medical research. We have little to no control over the researchers’ methodology. That’s our “contract”. But we do have the experience of a distinguished group to guide us:
https://poiscenter.com/forums/index.php?topic=2462.msg21005#msg21005
I really appreciate your great contributions to this forum. Let’s continue to work together to accomplish “the impossible” on a limited budget. CFS Research, as just one example, has cost million$ in research, with very little progress to show.
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I think that ewry new poiser apriciate what people did in past here,
I do not think this is questionable at all.
I also think that ewry new poiser will donate from his pocket if
needed in future.
Several problem there, but one of them is small amount of us.
Further... what i been thinking lately, that we organise "private"
reasarching.
Find some experts team who able to test "ewrything",
who do test for mony, and do all
posible testes, from genetics to...
For exemple, "Mayo clinic" chose 5-6 poisers difernet tipes,
who be able to be there.
I dont know is this stupid idea, but i would put
donation wright now for that.
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Gentlemen, please slow down, you weren’t there when we made the difficult decision of hiring NORD and I don’t believe you donated and saw the agony of our ups and downs throughout this most difficult process.Those were excruciating times, but as a rare disorder we are still way ahead of 90% of most other rare disorders in bootstrap funding of medical research. We have little to no control over the researchers’ methodology. That’s our “contract”. But we do have the experience of a distinguished group to guide us:
https://poiscenter.com/forums/index.php?topic=2462.msg21005#msg21005
I really appreciate your great contributions to this forum. Let’s continue to work together to accomplish “the impossible” on a limited budget. CFS Research, as just one example, has cost million$ in research, with very little progress to show.
I agree Demo, we are just very enthusiastic about the research and its potential because it affects us personally. We only wish the researchers to do their best. But we are also very fraustrated with some stuff we sometimes observe in the medical field, especially when our illness is not taken seriously and just get laughed at, this is something we are very keen on avoiding. Thanks again Demo for building up, managing and keeping up with this forum and research. I'm sorry if we sound too demanding.
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Let's hope the researcher(s) will come up with something interesting. I will go complete bananas when they solely be doing IgE measurements. With other words I hope they do not kick in open doors.
Exactly, I think this forum should have some contact with the team so we can at least suggest that they build up on Waldinger's findings, instead of starting from scartch or trying a random theory that is potentially unrelated to POIS. WE ARE IN A DIRE SITUATION, we don't have the luxury of time, so we hope the research would be relevant and constructive. I also whish the workers open mindedness. I don't want the research to be cancelled because " ewww, these men are masturbating, so gross...".
Don't get me wrong though, I don't think we should give researchers advice directly and don't think we are in a position to do so anyway because of our lack of medical training and biased opinions. But like demo has said already we have no influence on the methodology. I'm sure they will read all available papers about POIS.
CFS Research, as just one example, has cost million$ in research, with very little progress to show.
Indeed, I think people should lower their expectations. I have seen people talking about a cure after research has been done but we don't know anything yet about POIS. With the amount of funding and frequency of research a cure could be decades away. We are lucky if this research uncovers a tiny part of the mechanism of POIS
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See I'm not trying to tell people what to do. I don't think I'm in that position. But seeing how the last research went off the rails from Waldinger's research. I feel perhaps a bit of reminder won't hurt no body. I feel that medical professionals get too aggravated by suggestions from non-professionals, which I totally understand, but that shouldn't lead to complete dismissal of what the layman says. I feel if an idea needs to be dismissed, it should be dismissed for its stupidity and not because it was mentioned by a layman. Again I'm not trying to act as what I says is equal, but I feel that objectivity is more important than someone's medical degree.
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But seeing how the last research went off the rails from Waldinger's research.
That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?
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I think that ewry new poiser apriciate what people did in past here,
I do not think this is questionable at all.
I also think that ewry new poiser will donate from his pocket if
needed in future.
Several problem there, but one of them is small amount of us.
Further... what i been thinking lately, that we organise "private"
reasarching.
Find some experts team who able to test "ewrything",
who do test for mony, and do all
posible testes, from genetics to...
For exemple, "Mayo clinic" chose 5-6 poisers difernet tipes,
who be able to be there.
I dont know is this stupid idea, but i would put
donation wright now for that.
Excellent idea! Nothing prevents us from doing concurrent research!
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But seeing how the last research went off the rails from Waldinger's research.
That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?
A POISer volunteer for fMRI post-POIS onset from this forum complained that he was harmed by the research. An 18-month in-depth medical/legal investigation (withheld from us!) revealed there was absolutely no basis for the claim. Rutgers was so rattled though, they quit the research and (thankfully!!) fully refunded our fees to NORD. This is all explained here in depth, you can look up the thread.
Depressing period :(
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I want to make a correction about the comment Nas made which I did interpret incorrectly. He said that it completely went off the rails from where Waldinger was researching about. He didn't say it was Waldinger's research. :-[
But seeing how the last research went off the rails from Waldinger's research.
That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?
A POISer volunteer for fMRI post-POIS onset from this forum complained that he was harmed by the research. An 18-month in-depth medical/legal investigation (withheld from us!) revealed there was absolutely no basis for the claim. Rutgers was so rattled though, they quit the research and (thankfully!!) fully refunded our fees to NORD. This is all explained here in depth, you can look up the thread.
Depressing period :(
Yea I remembered the forum drama it created but forgot about the details, thanks. Harmed by research oh jezus. No instable people for our next research project please.
I think that ewry new poiser apriciate what people did in past here,
I do not think this is questionable at all.
I also think that ewry new poiser will donate from his pocket if
needed in future.
Several problem there, but one of them is small amount of us.
Further... what i been thinking lately, that we organise "private"
reasarching.
Find some experts team who able to test "ewrything",
who do test for mony, and do all
posible testes, from genetics to...
For exemple, "Mayo clinic" chose 5-6 poisers difernet tipes,
who be able to be there.
I dont know is this stupid idea, but i would put
donation wright now for that.
Excellent idea! Nothing prevents us from doing concurrent research!
There is a lab for clinical studies/group analysis in Berlin where you can perform such things:
https://www.synevo-ssl.de/en/about-us.html
All you need is money and patients.
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We are lucky if this research uncovers a tiny part of the mechanism of POIS
Thank you for expressing some realistic expectations!
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Harmed by research oh jezus. No unstable people for our next research project please.
“No unstable people”?? We’re POISers !!!!!
(https://cdn2.iconfinder.com/data/icons/facebook-ui-colored/48/JD-18-512.png)
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There is a lab for clinical studies/group analysis in Berlin where you can perform such things:
https://www.synevo-ssl.de/en/about-us.html
All you need is money and patients.
Someone else would have to manage this. I’m exhausted ;D
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I want to make a correction about the comment Nas made which I did interpret incorrectly. He said that it completely went off the rails from where Waldinger was researching about. He didn't say it was Waldinger's research. :-[
Thanks, I guess I'm not suing then ;D
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But seeing how the last research went off the rails from Waldinger's research.
That was not Waldinger's research, it was poiscenter funded research. Why was it cancelled again?
A POISer volunteer for fMRI post-POIS onset from this forum complained that he was harmed by the research. An 18-month in-depth medical/legal investigation (withheld from us!) revealed there was absolutely no basis for the claim. Rutgers was so rattled though, they quit the research and (thankfully!!) fully refunded our fees to NORD. This is all explained here in depth, you can look up the thread.
Depressing period :(
Wow, what an asshole :/ He should've known that research can sometimes be dangerous and that he should be full aware of its implications. Sigh.
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Thanks, Nas.
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I want to make a correction about the comment Nas made which I did interpret incorrectly. He said that it completely went off the rails from where Waldinger was researching about. He didn't say it was Waldinger's research. :-[
Thanks, I guess I'm not suing then ;D
(https://cdn2.iconfinder.com/data/icons/facebook-ui-colored/48/JD-18-512.png)
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NORD just informed me that the POIS search results on NORD's website now include data from NIH's (National Institutes of Health) GARD (Genetic and Rare Diseases Information Center).
https://rarediseases.org/?s=pois&submit=
https://rarediseases.org/gard-rare-disease/10809/postorgasmic-illness-syndrome/
Thanks to POISCenter members, including Stef, who helped put this together starting a few years ago!
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I just like to mention that I have been recently in contact with a biochemist in Belgium who says he has POIS. I talked to him for a while and he said that he would do a cultured test for the blood and semen, and observe the interaction. He did it, and what he told me that there were no IgG activity observed. I asked him whether he actually had POIS, he generally seems to have it all though he does not have PE. He said that he'll do further tests until he abandones the auto-immune hypothesis. This is his FB profile if any is interested to talk to him: https://www.facebook.com/pdepauw
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Thanks, Nas!
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NORD just informed me that the POIS search results on NORD's website now include data from NIH's (National Institutes of Health) GARD (Genetic and Rare Diseases Information Center).
https://rarediseases.org/?s=pois&submit=
https://rarediseases.org/gard-rare-disease/10809/postorgasmic-illness-syndrome/
Thanks to POISCenter members, including Stef, who helped put this together starting a few years ago!
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We are lucky if this research uncovers a tiny part of the mechanism of POIS
Thank you for expressing a realistic expectation!
Please also keep in mind that NORD considers this current research to be a “baby step” with “seed money” that we ourselves raised at POISCenter. The ultimate goal is to attract BIG players, like the National Institutes of Health, with 6-and-7-figure Grants (total funding: $32 Billion/year) to explore POIS in the company of research on major illnesses, such as cancer.
This rarely happens as a first step.
So we are on a journey to prove ourselves as being worthy of major research *after* a first study is reputably published and will hopefully garner major medical attention.
Quantum’s recent announcement of our now having attained 750+ registered POISers at the forum made a very good impression at NORD. We look serious!
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Very nice ! 8)
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Thanks, b_jim!
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Many, many thanks again to everyone here who contributed your hard-earned fund$ to this new POIS Study!
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Our POIS Research Team
https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/research-grant-recipients/
From NORD:
Dear Demo,
We are very pleased to tell you that NORD's Medical Advisory Committee has selected the following POIS research project for funding:
Principal Investigator: Tierney Lorenz, PhD
Institution: University of Nebraska-Lincoln
Project Title: Autonomic, endocrine, and immune mediators of Post-Orgasmic Illness Syndrome
Congratulations! We recognize that this has been a long journey for the POIS community and are so excited that this grant funding will be used to support Dr. Lorenz and her team in advancing the field of POIS research.
Research Administration
National Organization of Rare Disorders (NORD)
(http://cb3.unl.edu/wp-content/uploads/2018/08/Lorenz_cropped.jpg)
Dr. Tierney Lorenz, our Primary Investigator
(https://liberoscenter.com/wp-content/uploads/2015/04/DSC_1260.jpg)
Dr. Nicole Prause, our Co-Investigator
The POIS data will be collected at Dr. Prause’s lab (Liberos LLC) in Los Angeles, but both Dr. Lorenz and Dr. Prause will be analyzing it.
www.liberoscenter.com
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Any ideas on who're the subjects?
Yes. Forum members. But let’s please not worry about it now. We’re in the *very* preliminary stages, nowhere near volunteer recruitment thinking or discussions.
Many thanks, Nas
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I think my last trial ever on POIS will be to up my Epinephrine production and if that did not work, I'll lower it. Otherwise, I'm going to stop, I have tried almost everything on this forum with little to no success. I might be coming to a conclusion that this illness is just untreatable, it's one of the most mind boggling, inconsistent and soul crushing illnesses that anyone can face, it is an absolute curse. In fact I've reached a point where I don't even know if the next research will find anything. We are eternally screwed and there is no way out of this.
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I can’t tell you how many times I’ve reached the same conclusion. But I just didn’t give up and I’m glad that I didn’t.
I will *never* agree with the statement, “we are eternally screwed and there’s no way out of this”. They said that about certain-death-sentence AIDS but now there’s life-saving treatment.
But I absolutely understand your sentiment. I’ve been there many, many times. It’s an inhuman disorder!
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I can’t tell you how many times I’ve reached the same conclusion. But I just didn’t give up and I’m glad that I didn’t.
I will *never* agree with the statement, “we are eternally screwed and there’s no way out of this”. They said that about certain-death-sentence AIDS but now there’s life-saving treatment.
But I absolutely understand your sentiment. I’ve been there many, many times. It’s an inhuman disorder!
I respect your opinion but for me personally that'll be it.
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I respect your opinion but for me personally that'll be it.
Likewise, Nas, I respect yours.
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I think my last trial ever on POIS will be to up my Epinephrine production and if that did not work, I'll lower it.
Epinephrine controls heart rate. If your heart rate is normal or high then epinephrine will not work for you and could make your POIS worse. My advice is that you measure your resting heart rate and blood pressure first before experimenting with catecholamines. Heart rate is an indirect yet effective way of measuring epinephrine and norepinephrine.
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I think my last trial ever on POIS will be to up my Epinephrine production and if that did not work, I'll lower it.
Epinephrine controls heart rate. If your heart rate is normal or high then epinephrine will not work for you and could make your POIS worse. My advice is that you measure your resting heart rate and blood pressure first before experimenting with catecholamines. Heart rate is an indirect yet effective way of measuring epinephrine and norepinephrine.
Good idea, I'll test my heart rate after Orgasm and see. I normally get low blood pressure after Orgasm, I'll also try to check that.
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Hello guys,
Would like to share a recently published paper on new technique deleloped at Johns Hopkins university for measuring brain inflammation in people suffering with post-Lyme disease syndrome and specifically from brain fog:
New scan technique reveals brain inflammation associated with post-treatment Lyme disease syndrome
https://m.medicalxpress.com/news/2019-02-scan-technique-reveals-brain-inflammation.html (https://m.medicalxpress.com/news/2019-02-scan-technique-reveals-brain-inflammation.html)
Believe application of such technique might be curious in our case.
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Very interesting I wonder if we can test for Translocator Protein through blood serum?
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Would like to share a recently published paper
https://m.medicalxpress.com/news/2019-02-scan-technique-reveals-brain-inflammation.html (https://m.medicalxpress.com/news/2019-02-scan-technique-reveals-brain-inflammation.html)
Thanks, Gabin!
-
Could this thread [woman drinking semen, etc.] be deleted? Ridiculous thread.
Done. Thanks, Muon, for pointing it out.
-
Today is March 1.
(https://static1.squarespace.com/static/546ebba7e4b0d34dcb93e45a/t/550c451ce4b0bd05e4040f85/1426867487014/)
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Unfortunately, a very small minority of us have needed this message from time to time. This is being posted because none of the forum members here are really trained to respond to this level of POIS desperation.
(http://static-34.sinclairstoryline.com/resources/media/0e95fa94-2b2d-4345-b320-e41c96859023-large16x9_SuicidePreventionLifeline.jpg?1536623005052)
•• USA: 800.273.8255 click here
••. List Of International Suicide Hotlines:
telephone
• http://ibpf.org/resource/list-international-suicide-hotlines
telephone with website/email contact info
• http://www.suicide.org/international-suicide-hotlines.html
-
I’d appreciate any of your your thoughts as to where this message above could be permanently posted. I’ll leave it here for a short while.
I think the same space where you have thank you as a banner and complete the pois survey is good spot for a smaller bulletin or just the numbers posted.
The first page also has a lot of space where a banner can be placed.
-
Thank you, CP2!
It’s on the Welcome page for now.
-
CP2, I like your banner idea: “Are you a POISer?” linked to description paragraph on Welcome page.
Quantum, where could we put the banner?
-
CP2, I like your banner idea: “Are you a POISer?” linked to description paragraph on Welcome page.
Quantum, where could we put the banner?
Hi Demo,
There is only one spot for a banner, it is on front page. Currently, it is the POIS Survey message with the link to it. Last time I checked, LPM was still taking entries. You want to replace it, now?
-
No, no, Quantum, thanks! Maybe the Welcome page is strong enough!
-
If we can just think of a way to make it easier, either for online Google searchers or at the forum by newcomers, to make “Are you a POISer?” easier to find, I think it would help everyone. Right now, I’m happy with The Welcome Page where it is. Google’s spiders should pick that up nicely.
By the way, I’d like to have the final edits and inputs from forum members (e.g., HOD & Moderator CP2) of that post reviewed by the Administrative/Moderators Team. I’m not smart enough to do it properly alone :)
-
Rare Disease Day 2019
Notes and Successes
Posted by Christina Jensen, NORD
https://rarediseases.org/rare-disease-day-2019-notes-successes/
ps - if anyone wishes to volunteer their POIS-awareness story for international publishing
& distribution by NORD, let me know & I’ll pass your interest in participating along to NORD.
-
Poiscenter have now more than 800 registered members :)
-
Poiscenter now has more than 800 registered members :)
(https://i.gifer.com/U6xg.gif)
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It's really weird that there are at all cognitive/psychological symptoms associated with POIS. If we look at POIS as an auto-immune disease, then why the heck doesn't other auto-immune diseases like arthritis or bowel's disease don't have these symptoms associated with them? Or the fact that I don't have other symptoms than brain symptoms? It's one of these oddities in this illness, that not only are we auto-immunogenic towards our own prostatic fluid, we have weird social withdrawal, and character change that must be associated with it. Not only do we have to suffer from sexual issues, we have to suffer from issues in LIFE in general? Such a goddemn curse and if only it's clear how can something happening is the genitourinary tract cause symptoms in the CNS? Is it just too much of a stigma to solve? I just wish I can get rid of this hellhole of an illness, I just don't want my entire personality to change just so I can have a wank.
-
Well said, Nas.
-
My synonym for POIS:
(http://www.soulkiller.com/images/homelogo2.jpg)
-
Belated congrats to Quantum for over
(https://media.giphy.com/media/NcIip8LsU9NAc/giphy.gif)
posts at the forum.
Congrats for not only the impressive quantity, but also for the incredible
QUALITY of those posts.
Thank you, Quantum!
All the best,
Demo
-
View the most recent posts on the forum. (https://poiscenter.com/forums/index.php?action=recent)
-
From this point on, I’m moderating foul language, especially with researchers now reading the forum. You don’t see that language in any scientific publication.
I want us to be taken seriously.
Demo
-
Nas, your f-word reply’s deleted. Consider this your first warning. If you need to vent, plenty of forums out there where you can freely do that.
-
Nas, your f-word reply’s deleted. Consider this your first warning. If you need to vent, plenty of forums out there where you can freely do that.
You won't stop me!
-
Nas, your f-word reply’s deleted. Consider this your first warning. If you need to vent, plenty of forums out there where you can freely do that.
You won't stop me!
Banning you will stop my having to delete your garbage.
-
Nas, your f-word reply’s deleted. Consider this your first warning. If you need to vent, plenty of forums out there where you can freely do that.
You won't stop me!
Banning you will stop my having to delete your garbage.
I'm done with a lot of stuff in the forum anyways.
Adios amigos!
Going out with a bang!
-
Bye
-
Nas, I’m deleting your posts till I get an apology.
-
Nas, I’m deleting your posts till I get an apology.
I did not insult you Demo, I have deep respect for what you and other moderators in this forum have done for the POIS community. However, I feel it is unfair to limit people freedom of self expression while they suffer from a deeply crushing illness, venting using cursing is a good method of dealing with it all. Additionally I do not think that this forum has reached the level of academic significance to be worthy of being moderated, I think this forum is still a community based forum and it should still keep being that for now. If you are insistent on moderating curses, then perhaps this forum is too academic for me, in which case I am not academically qualified to be a member here since I have no scientific degree that qualifies me, besides the fact that the terms and rules of this forum would not be fitting for me.
Anyhow I apologize for our disagreement on this issue, and if I was to be banned then so be it. I will still try to be active indirectly.
Thanks again for all the work you and the rest of administrators and members have done throughout the years. I am deeply appreciative of it.
I guess this is my final good bye.
Take care everyone.
-
I think I will stop posting new comments on this forum and will only modify existing threads. I have wasted a lot of time by posting comments which didn't lead to anything. Also 'contributing' to discussions seem to be more and more stressful (very prone to stress lately) even when typing a small sized text.
-
Thank you both for your time. I’ll try to forget the insults. If you don’t know what that means, kindly consult the rules & regulations.
https://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259
Best wishes for a POIS-free life.
Demo
ps - after you read the above link carefully, you’re more than welcome to stay. You both have amazing analytical skills. But the rules, regulations, moderation, and the *past* banning of undesirables is why we’re still alive - and THRIVING - for 12 years.
My best wishes, sincerely.
-
The World's Leading Cause of Death? A Bad Diet
https://science.slashdot.org/story/19/04/05/239208/the-worlds-leading-cause-of-death-a-bad-diet
-
The World's Leading Cause of Death? A Bad Diet
https://science.slashdot.org/story/19/04/05/239208/the-worlds-leading-cause-of-death-a-bad-diet
I’m in trouble! ;D
-
I think I will stop posting new comments on this forum and will only modify existing threads. I have wasted a lot of time by posting comments which didn't lead to anything. Also 'contributing' to discussions seem to be more and more stressful (very prone to stress lately) even when typing a small sized text.
-
(http://www.fromnord.fr/template/theme/img/logo.png)
https://tinyurl.com/y3rtg74r
-
“Familiar Place” is now “Admin Corner”.
Demo
-
(http://www.docksidecondominiums.com/wp-content/uploads/2015/04/Dockside_happy_easter_and_passover.jpg)
Thanks Demo, you too !
-
Happy Easter.
-
Thanks, HOD!
-
Thanks, Quantum!
-
(http://www.docksidecondominiums.com/wp-content/uploads/2015/04/Dockside_happy_easter_and_passover.jpg)
-
This is my
(https://serbiananimalsvoice.files.wordpress.com/2018/05/4000th-post.jpg)
Plus my 8,000 more posts on TNS/POIS
(our predecessor) = 12,000 posts!
Is that “normal”? ?
(https://cdn2.iconfinder.com/data/icons/facebook-ui-colored/48/JD-18-512.png)
It’s been an honor and a privilege to serve each and every one of you! I’ve been committed here for the last 12 years for only one reason: to help eradicate POIS.
Best,
Demo
-
Click here
View the most recent posts on the forum. (https://poiscenter.com/forums/index.php?action=recent)
Please bookmark this. You’ll thank me :) I always start here to find out what’s going on at the Forum!
-
Congratulations on another big milestone! And thank you for helping to lead us!
-
Many thanks, Limejuice! You have been and continue to be a most valuable member of this forum!
-
(https://cdn.11street.my/g3/1/5/8/6/8/0/19158680_B.jpg)
Are you free to tell us how you got that username?
-
I should make up an incredible story about how the juice from a lime saved lives at the last possible moment, but honestly it's a college nickname that barely resembles the spelling of my last name. Thanks for asking!
-
Mystery cleared ;D (Limejuice, my first laugh today)
Thanks, Limejuice! You saved me from over-seriousness today :)
-
Quantum’s POIS Types Chart
https://tinyurl.com/yyqo96fo
-
A Special Thank You to
Our Anonymous Donor
For paying our forum’s computer hosting fees
Through mid-2020!
Demo
-
I also join to give him a special thank you! :D
-
Thank you, fernab! Sending him your Thanks now.
-
Great news, everyone !
POIS research is moving more than ever before this year, and I am glad to announce you that a new POIS survey has been created by the Tulane Urology Departement. The survey is now online, and we hope that as much members as possible will fill it. Here is the link to the survey:
https://forms.gle/dUN6M8LyDwM6nqzAA
Here is the e-mail I have received, containing more info about the survey:
"Dear Quantum,
Thank you for your help in getting this survey to the members of the POIS Center forum. Here is the link to the survey we have created: https://forms.gle/dUN6M8LyDwM6nqzAA. We hope to have a good response to this survey as we believe it can help us determine how to best further research this condition. It is a short survey that should take about 10-15 minutes. There only instructions are that we ask respondents to be as honest as possible and to only complete this survey once. The survey is completely anonymous and confidential.
Thank you, again, for you help and please let me know if you have any questions or would like any other information from me.
Sincerely,
Caleb Natale
MD Candidate | Class of 2021
Tulane University School of Medicine"
You may remember that Dr Wayne Hellstrom, who is on the POIS Doctors list ( https://poiscenter.com/forums/index.php?topic=2575.msg22340#msg22340 ), is Professor of Urology and Chief of Andrology at Tulane. Also, Dr, Hoang Minh Tue Nguyen, also in Tulane, who was the main author of the 2018 POIS article by Tulane, is involved in this new POIS Survey project, as well as Natale Caleb, MD Candidate at Tulane University Scholl of Medecine.
So, do not hesitate to fill this Survey, it will tremendously help the POIS research going forward !!!
And, thank you the the Tulane Team for their interest and involvement in POIS research !
-
Congratulations, Quantum, your patience paid off!
Demo
-
I join to congratulate you too Quantum!
:)
-
Thanks to both of you !
-
Click here
View the most recent posts on the forum. (https://poiscenter.com/forums/index.php?action=recent)
Please bookmark this. You’ll thank us :) I always start here to find out what’s going on at the Forum!
-
Quantum, I completed the Tulane survey.
It went so smoothly!
Very well done. Comprehensive but without the slightest
difficulty responding!
Thanks again!
Demo
Yes, thnaks for your comment, it was also my experience, it is easy to fill it.
I hope your comment will motivate more members to participate to this new Tulane POIS survey :)
again, the link to the survey: https://forms.gle/dUN6M8LyDwM6nqzAA
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Quantum, I completed the Tulane POIS survey that you brilliantly introduced to our forum.
It went so smoothly! And quickly!
Very well done. Comprehensive but without the slightest
difficulty responding!
Thanks again!
Demo
Again, everyone, filling out this very short survey will help our researchers
***help Y O U and your POIS!***
Here’s the link to the Tulane survey: https://forms.gle/dUN6M8LyDwM6nqzAA
-
Mentioned in the article above:
Journal of the Royal Society of Medicine
Royal Society of Medicine Press
“Sneezing induced by sexual ideation or orgasm: an under-reported phenomenon”
https://www.ncbi.nlm.nih.gov/m/pubmed/19092028/
I *almost always* sneeze at POIS onset.
Does anyone else here sneeze like that? Theories? Clues? Autoimmune related?
I believe I used to sneeze afterwards. I know my nose used to itch and be dry as well.
-
Thanks, Daysleeper! Can you please explain the
“used to “ part? Thanks.
-
I just haven?t had full blown POIS for a while!
-
Great!!!
-
Well structured survey. But I only stumbled across it by chance. Shouldn't this be broadcast by email and in other ways too?
-
Good news, and a reminder , about the 2019 POIS survey of Tulane research team !
First, Mr Natale, MD candidate at Tulane, has informed me that they had 180 forms filled out so far, and that they are very happy about it.
Also, as they want the most possible answers, I ask all members who have not filled the Tulane survey yet to please do so, by clicking this link :
https://docs.google.com/forms/d/e/1FAIpQLSfeuhS2D5f0WTmTjrR4cWzZrXm9_AojG6oTrTxk64pilntacg/viewform
It only takes a few minutes of your time, but is important for POIS research !
Thanks !
-
POIS Study volunteer recruitment ads will appear here at the forum in about a month. POIS volunteer testing will be done in Los Angeles, at:
http://www.liberoscenter.com/
I will most probably volunteer.
Demo
For more info on the Study:
https://tinyurl.com/y42f7hqe
-
(https://i.pinimg.com/originals/8d/c3/0e/8dc30e7b94e352823b1f0a55d2d3f0e2.jpg)
-
Revised POISCenter Welcome Post:
https://poiscenter.com/forums/index.php?topic=1.msg1#msg1
Constructive comments welcome.
-
Thank you, QUANTUM, for initiating change in our Welcome page.
You’re right, it was getting old & stale! :)
-
Well structured survey. But I only stumbled across it by chance. Shouldn't this be broadcast by email and in other ways too?
Not sure about “other ways”, but our email system is not currently workable :(
-
Thank you! and thanks from this member, to the awesome team here on the POIS forum.
-
(https://media.tenor.com/images/31fb474814e2f50785f4b4e508596544/tenor.gif)
FROM YOUR ADMIN/MOD TEAM:
• Quantum
• Observer
• COLM_2
• certainlypois2
• fernab
• demografx
-
Thank you! and thanks from this member, to the awesome team here on the POIS forum.
Thanks, Animus! Your amazing 10-year POIS success story has created hope for thousands of POISers, of which 800+ are members here!
-
Click here
View the most recent posts on the forum. (https://poiscenter.com/forums/index.php?action=recent)
Please bookmark this. You’ll thank us :) I always start here to find out what’s going on at the Forum!
https://tinyurl.com/yy97dfue
-
(https://media.tenor.com/images/31fb474814e2f50785f4b4e508596544/tenor.gif)
FROM YOUR ADMIN/MOD TEAM:
• Quantum
• Observer
• COLM_2
• certainlypois2
• fernab
• demografx
-
Marry Christmas everyone
-
Marry Christmas everyone
Marry Christmas HOP and everyone!
-
Marry Christmas everyone
Marry Christmas HOP and everyone!
I see what you did there.
(https://media.giphy.com/media/12ZDIx1Mw1cXVm/giphy.gif)
Merry Christmas
(https://cdn.shopify.com/s/files/1/0096/0289/1835/products/2_da9e6489-72cc-4599-aea2-610410e69b83.PNG?v=1550094089)
-
Nice! We hit 354 members in the Facebook group. I think I would be around 450 but a lot of guys actually have PMO and either leave or decide not to join after I explain PMO to them
-
We have hit 900 POISCenter members now !
Thank you, Quantum!!
(https://i.gifer.com/OkrE.gif)
(https://pa1.narvii.com/6527/f491e5eb3a57a29fe3f1a0bd278f05817437566c_hq.gif)
-
(https://www.iphone2lovely.com/newyear/wp-content/uploads/2016/07/New-Year-2020-animated-greeting-card-gif.gif)
FROM YOUR ADMIN/MOD TEAM:
• Quantum
• Observer
• COLM_2
• certainlypois2
• fernab
• Demografx
HAPPY NEW DECADE ALSO
-
Happy new year !
-
Important notice:
It is possible that there will be a significant downtime of Poiscenter in the coming days, in order to upgrade the forum platform ( SMF). I do not know the exact message you will get then, but the forum will not be accessible for a few hours or so.
Thanks for your understanding.
-
Quantum, thanks for upgrading the forum!!
(And thanks to Muon for pointing out the need to upgrade!)
-
Important notice:
It is possible that there will be a significant downtime of Poiscenter in the coming days, in order to upgrade the forum platform ( SMF). I do not know the exact message you will get then, but the forum will not be accessible for a few hours or so.
Thanks for your understanding.
The forum upgrade is now completed, we run on the most recent version of SMF. This will obviously makes the forum running more smoothly, and with enhanced security, because this upgrade have fixed many bugs in the SMF software.
Thank you for your patience during the downtime !
-
The forum upgrade is now completed
THANK YOU, QUANTUM!
-
Public word of sincere gratitude to our Anonymous Donor, who has just paid our annual computer hosting service fee. Also paid: our Domain Name Renewal for POISCenter.com.
T H A N K Y O U!!
Demo
And the Admin/Mod Team
-
Private Message from Quantum who is in the pharmacy business:
“Quercetin is probably a good choice, along with Vit C, for prevention and treatment of coronavirus infection. If you have time, you could post the info on the forum ( you can also translate this link that is in French: https://ici.radio-canada.ca/nouvelle/1538011/quercetine-coronavirus-michel-chretien-ircm-montreal-patrice-roy ) “
You may all want to research Quercetin further?
A start:
https://en.m.wikipedia.org/wiki/Quercetin
Demo
QUANTUM’S ARTICLE AUTO-TRANSLATED BY GOOGLE:
undefined
Comments
Radio-Canada
Posted on February 24, 2020
The Montreal Clinical Research Institute (IRCM) may have found a substance that could stop the coronavirus. Branch manager Patrice Roy met with Dr. Michel Chrétien, who heads the team behind the discovery.
If there is one area on which Canada-China relations are not experiencing pitfalls at this time, it is that of medical research. Dr. Michel Chrétien and his team think they have discovered that a vegetable substance could act in a preventive and curative way on the coronavirus. It is quercetin.
It’s a plant! We could grow it in our gardens! [...] One finds some in onions, in garlic ...
Michel Chrétien, doctor and researcher at the IRCM
Dr. Chrétien says that the Chinese authorities are convinced that quercetin should be tested on patients infected with the coronavirus. If it doesn't work, at least we will have tried. But it is likely to work. It’s so serious. It's a pandemic now, says the researcher.
He explains that this substance is already used to treat and prevent Ebola as well as the Zika virus. In 2014, we had a crucial experiment with the national microbiology laboratory in Winnipeg. They were the only ones capable of handling the Ebola virus.
In this context, the clinical trial process may begin shortly in China, since tablets had already been created and approved by the FDA, the American regulatory agency. A small Swiss pharmaceutical company had done all the work of preparing high-dose quercetin [...], says the researcher. We have someone who has millions of pills at their disposal and who is with us to give China the necessary medicines. We have them.
A laboratory workstation.
A workstation of the Montreal Clinical Research Institute
PHOTO: RADIO-CANADA
The clinical trials will be carried out on 1,000 patients in Wuhan, a city in central China where the epidemic started, as soon as the tablets are sent there. Boxes of drugs are expected to leave Switzerland soon, according to Dr. Chrétien.
We are going to establish here [at the IRCM laboratory] a permanent video communication room to be in contact 24 hours a day with the Chinese. The results will be reported to us every day, he adds.
The Chinese doctor who ensures that he maintains a link with the Canadian team of researchers in this file is a former intern of the Institute, in addition to being a personal friend of Michel Chrétien, which facilitates the process. Zhu Chen also received an honorary doctorate from the University of Montreal in 2012.
A ridiculous cost
If the clinical trials generate positive results, billions of tablets will have to be produced to meet the demand, with patients having to ingest four a day.
Treating a patient with quercetin will cost only $ 1.50 a day, according to Dr. Chrétien, while the new antivirals [that patients are currently using] cost $ 1,000 a day.
The researcher is however cautious about the viability of quercetin and says he is very worried. Day by day, it gets worse and worse.
Read also :
Wall Street: coronavirus plunges the stock market
Coronavirus: "The risk is not higher yet"
World must prepare for pandemic, WHO admits
-
IMPORTANT NOTICE FROM THE POIS STUDY RESEARCHERS
“We have just received instructions from the UNL IRB that all in-person research is to be temporarily paused until further notice. Additionally, there is increasing guidance from state governments and CDC authorities to reduce personal contact and delay any non-essential travel. In order to protect both our participants and research staff - and reduce possible interference with our measurements of people’s stress and immune responses – we will be pausing all in-person study sessions for the time being. In the meantime, we will keep the online study screener open and will continue to conduct phone screenings to collect contact information from folks who qualify, in order to schedule later on when we are cleared to resume in-person research. We will keep the POIS community updated as soon as we have any new information. Thanks for your patience – and stay safe out there!”
-
(https://image.shutterstock.com/image-vector/stay-safe-stamp-on-white-260nw-1320874472.jpg)
(https://previews.123rf.com/images/creativebucket/creativebucket1806/creativebucket180600154/102644620-happy-doctor-showing-stay-healthy-banner-vector.jpg)
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We have hit 900 POISCenter members now !
Thank you, Quantum!!
(https://i.gifer.com/OkrE.gif)
(https://pa1.narvii.com/6527/f491e5eb3a57a29fe3f1a0bd278f05817437566c_hq.gif)
-
Click here
View the most recent posts on the forum. (https://poiscenter.com/forums/index.php?action=recent)
Please bookmark this. You’ll thank us :) I always start here to find out what’s going on at the Forum!
https://tinyurl.com/yy97dfue
-
Important, you need to use a good hand washing technique, in particular if you had to go to the grocery or anywhere essential and are coming back home. Remember that alcohol gel or other hand sanitizers are not as good as a hand wash with a good technique. See this short video to know how to wash your hand properly , so that you eliminate any possible pathogen from your hands:
https://www.youtube.com/watch?v=IisgnbMfKvI
wash hands regularly, for at least 1 min approx, with this good technique ( one minute is longer than you would think !)
Stay safe and healthy
-
Thanks, Quantum!
-
(https://www.paulreback.com/wp-content/uploads/2018/03/easter-passover-spring.jpg)
-
VERY EXCITING POIS RESEARCH NEWS!
“Hey Demo,
My name's Eric and I've been a member of the forum for a while now. I only learned about the UNL study recently and decided to investigate. After learning of a few deficiencies as a result of limited funding (they weren't going to look into delayed onset symptoms and other autoimmune/inflammatory biomarkers) I decided to get in contact with them to see how much funding they would require to expand their study to cover the things I thought were important.
I asked them to give me numbers for how much they would need for the basic additions I requested along with any other ones they could think of for their "dream" study. They came back to me with some ideas which I thought were good.
I and my family's foundation have decided to fully fund the "dream" study! Before I gave them the go ahead, I had asked Quantum if he knew any medical researchers in the forum I could contact. That's why I'd gotten in touch with him prior. Thanks again Quantum!
I also reached out to an autoimmune researcher friend of mine for suggested expansions to the study and she gave me a few that Tierney and Nicole hadn't thought of so those might be added too.
The study will be tracking more inflammatory biomarkers, including delayed onset people, adding research assistants, larger sample size, etc. I've been asked not to share their hypotheses or the study proposal so I can't share those details. Suffice it to say, the study should be more comprehensive than before and hopefully allow for some real progress.
I'm personally deeply motivated to increase visibility and research for POIS (since it's taken away a lot of joy from my life). This study seems like a great start.
Thanks for all your hard work organizing this study! The funding is almost the easy part, I think what you did was incredible. Hope you keep up your good work!
Thanks,
Eric”
Thank you, Eric!
Best wishes!
Demo
-
cross-posted:
It's fascinating to see the quality of discussion and the camaraderie back in 2011. People were encouraging each other, discussing new theories and trying new things.
hurray: 100% agreed!
Let’s all try to get some more of that spark back!
-
Click here
View the most recent posts on the forum. (https://poiscenter.com/forums/index.php?action=recent)
Please bookmark this. You’ll thank us :)
I always start here to find out what’s going on at the Forum!
Demo
https://tinyurl.com/yy97dfue
-
(https://i.imgur.com/VC17EY2.gif)
Just a little bit of unabashed self-congratulation!
;D ;D ;D
Congrats, and thanks for all your hard work Demo!
-
(https://i.imgur.com/VC17EY2.gif)
Just a little bit of unabashed self-congratulation!
;D ;D ;D
Thank you for what you do!
-
(https://i.imgur.com/VC17EY2.gif)
Just a little bit of unabashed self-congratulation!
;D ;D ;D
Thank you for what you do!
(https://i.kym-cdn.com/entries/icons/facebook/000/013/137/Naamloos-1.jpg)
-
Wow I didn't know Morgan Freeman was going to be so large!
-
5000 pieces of wisdom! Thank you for your guidance!
-
Congratulations Demo! Looking forward to the next 5000 posts :) ;D :)
-
Wow I didn't know Morgan Freeman was going to be so large!
Observer, you can adjust the width & height to your liking :)
-
Thank you, everyone! It’s been
an amazing 13 years here!!
:) :) :) :) :) :) :) :) :) :) :) :) :)
-
(https://i.pinimg.com/originals/91/44/ea/9144ea2ed3676bf92c49f6aaf8f5cef2.gif)
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This thread, which original name was " This may seem like a familiar place.", in reference to the old NSF POIS forum, which was only one thread with all posts in it, and has been the only place POIS sufferers could discuss for 5 years, before thsi forum had been created, in 2011.
Now, this thread has been renamed to "Free Flow Discussion about POIS".Since it contains years of comments and discussions about POIS, we will keep it for sure, but as you may see, this format is not very useful, when you want to find back a specific information in it - it gets buried in the many pages, and somehow, lost.
That is why we prefer you start a specific topic with its own title, on the appropriate board, so that the information will be far more easier to see and to reach for, and will readily available for newcomers as well.
To find something in this thread where all is mixed up and that has currently over 2300 replies in it, you must use the search box on the forum homepage, and use the best possible keywords to find the relevant post(s)... Yes, 2300 replies... you may now understand why we suggest you create separate topics with a specific title ;)
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you may now understand why we suggest you create separate topics with a specific title ;)
I wish the topic titles where specific. ;-)
What's the admin opinion on changing the post titles a bit?
Titles like "My cure!!!" don't help when scanning the forum, you guys could adjust the title to mention the supplement (or theory or whatever) used in that cure.
Another good thing would be if obvious duplicates would be merged, especially if it's a lot of small threads with only 1-2 posts.
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I get your point, Berlin, that is why we encourage member to create specific, descriptive, titles.
This forum has over 9 years of existence, and nearly 30,000 posts in 2200 topics, so it is not possible to rectify and classify all that is already done ( we do change the topic title, of course, when there is a "found a cure to POIS" misleading title or similar ) However, a forum reorganization is under way ( you may have noticed some of it on the categories and boards organization and names), so that it will be easier the find the right post at the right place. If the title is descriptive, it will be better still :)
In addition to that, there will soon be a new thread, "NEWCOMERS - START HERE !", to give basic orientations to newcomers so that they will not be lost, and will be provided with links to more important threads and messages, from the start, like "synthesis posts"
If anyone has the time and the motivation to make "synthesis posts", where are gathered information of a specific kind, you are very welcome to do so. Example of such threads, are Muon's excellent "Paper Archive" post, a list of all POIS scientific articles, so you do not have to search all over the forum the scattered mentions of those articles ( see this thread at https://poiscenter.com/forums/index.php?topic=3127.msg31515#msg31515 (https://poiscenter.com/forums/index.php?topic=3127.msg31515#msg31515) ). Another example is the POIS Types Chart, where is gathered numerous methods that have brought significant relief to at least one POIS sufferer ( see https://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448 (https://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448) ), which is faster than readings through hundreds of topics to find those. I will be more than happy of anyone comes with that kind of synthesis post.
There is also the search box on forum homepage, for a specific query, but the kind of posts mentioned above is very useful for everyone.
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you may now understand why we suggest you create separate topics with a specific title ;)
I wish the topic titles where specific. ;-)
What's the admin opinion on changing the post titles a bit?
Titles like "My cure!!!" don't help when scanning the forum, you guys could adjust the title to mention the supplement (or theory or whatever) used in that cure.
Another good thing would be if obvious duplicates would be merged, especially if it's a lot of small threads with only 1-2 posts.
If I want to look for info on a particular supplement, theory, or drug, I usually do a Google search specifying all results to be on poiscenter.com like so:
site:poiscenter.com milnacipran
And if you are being thorough, it's also worth checking the old Naked Scientist Forum:
site:thenakedscientists.com silodosin
edit: I just tried the forum search, and it was quite helpful. Just make sure that you navigate to "Home" before you use it, so that it searches the whole forum.
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If I want to look for info on a particular supplement, theory, or drug, I usually do a Google search specifying all results to be on poiscenter.com like so:
site:poiscenter.com milnacipran
And if you are being thorough, it's also worth checking the old Naked Scientist Forum:
site:thenakedscientists.com silodosin
Great tips, hurray, I will include this information in the upcoming new thread for newcomers :)
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If I want to look for info on a particular supplement, theory, or drug, I usually do a Google search specifying all results to be on poiscenter.com like so:
site:poiscenter.com milnacipran
And if you are being thorough, it's also worth checking the old Naked Scientist Forum:
site:thenakedscientists.com silodosin
Great tips, hurray, I will include this information in the upcoming new thread for newcomers :)
That sounds like a useful thread :)
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edit: I just tried the forum search, and it was quite helpful. Just make sure that you navigate to "Home" before you use it, so that it searches the whole forum.
This is a problem many people might not be aware of, and as a result, may stop making use of the search function. This navigate to home tip could be placed inside the welcome thread.
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edit: I just tried the forum search, and it was quite helpful. Just make sure that you navigate to "Home" before you use it, so that it searches the whole forum.
This is a problem many people might not be aware of, and as a result, may stop making use of the search function. This navigate to home tip could be placed inside the welcome thread.
I took a note, thanks
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People I wish to find people to share my joy for finding the solution to POIS.
I contacted yesterday someone from Greece and we will meet next week.
I was a POIS sufferer for more the 14years and now things are Great, no more this self autoimmune attack, flu like syptoms, I remember how much easy was to get gold during winter.
I wish to call and share the news with women who met me in the past. Maybe they wouldnt care.
I can confirm that not only no POIS symptoms but also it became easier to ejaculate. It is possible now to ejaculate, 3 times at the same hour.
Of course I will be tired, but not in the POIS way.
Big relief
3 things I ve done this last month that my pois left
1) The main reason I thing - finding the correct Homeopathic Treatment ("Classical Homeopathy" - it is not "herbs" or "vitamins", the Doctor finds you Homeopathic Temperament) - I was doing Homeopathy 10 years, changed several doctors but the persistance this August had results...
2) I took away amalgam filling
3) Started Ayurvedic Medicine. (one pill in the morning - and a powder spoon in the night)
Those are the 3 things that I did in July. I continuou to eat gluten free, a multivitamim per day, and various vitamins from time to time, but this is not the solution.
Of course in the past I took megadoses of vitamines before and after ejaculation, cold shower is still a nice tonic
Which doctor helped? What kind of medication helped ?
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My physical POIS symptoms are easier to describe than my cognitive POIS symptoms.
My physical symptoms: extreme exhaustion, dry fingertips
My cognitive symptoms:
the first day is usually the worst. My creative juices dry up. Nothing is exciting. I’m depressed, but in a way that’s difficult to describe. My emotions are flat. My decent sense of humor and my memory, concentration and my ability to smile, to appreciate beauty go right out the window. And the surreal symptom that’s most difficult to describe:
(https://pbs.twimg.com/profile_images/378800000246325434/c9d18272ca2d134adeddb94e89318078_400x400.jpeg)
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My physical POIS symptoms are easier to describe than my cognitive POIS symptoms.
My physical symptoms: extreme exhaustion, dry fingertips
My cognitive symptoms:
the first day is usually the worst. My creative juices dry up. Nothing is exciting. I’m depressed, but in a way that’s difficult to describe. My emotions are flat. My decent sense of humor and my memory, concentration and my ability to smile go right out the window. And the surreal symptom that’s most difficult to describe:
Just for clarification: Is this with our without your TRT usage? :-)
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Just for clarification: Is this [your set of cognitive POIS symptoms] with or without your TRT usage? :-)
Both. With TRT/daytime sleep aids, symptoms are drastically reduced. From suffering POIS agony for 4 days pre-TRT, to as little as hours today.
Pre-TRT, POIS symptom intensity was also far greater.
berlin1984, thanks, great question.
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Demo did you also have great success with TRT without the antihistamine sleep aids?
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I’ve been on TRT for 11 years now. It’s always been my primary treatment method. Early years without Benadryl or Tylenol worked well. “Great”? Maybe more so in the beginning years. I’m looking forward to 100% cure. Not sure I’ll find it in my lifetime (I’m in my senior years).
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Thanks I trialed hCG monotherapy but failed due to high estradiol side effects like anxiety. I'm going to see about Testosterone therapy next and perhaps low dose hCG to maintain fertility once I have the Test dosage dialed in with estradiol under control. The energy I experienced at the beginning of the hCG therapy before estrogen got out of control was exciting.
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Best wishes, drop247!
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My physical POIS symptoms are easier to describe than my cognitive POIS symptoms.
My physical symptoms: extreme exhaustion, dry fingertips
My cognitive symptoms:
the first day is usually the worst. My creative juices dry up. Nothing is exciting. I’m depressed, but in a way that’s difficult to describe. My emotions are flat. My decent sense of humor and my memory, concentration and my ability to smile, to appreciate beauty go right out the window. And the surreal symptom that’s most difficult to describe:
(https://pbs.twimg.com/profile_images/378800000246325434/c9d18272ca2d134adeddb94e89318078_400x400.jpeg)
Just for clarification: Is this [your set of cognitive POIS symptoms] with or without your TRT usage? :-)
Both. With TRT/daytime sleep aids, symptoms are drastically reduced. From suffering POIS agony for 4 days pre-TRT, to as little as hours today.
Pre-TRT, POIS symptom intensity was also far greater.
berlin1984, thanks, great question.
This is NOT my endorsement or recommendation for anyone else with POIS to try TRT! A good POIS treatment is between you and a trusted doctor. My preferred treatment can be unacceptably risky for many POISers.
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Happy Christmas to all
(https://sp-ao.shortpixel.ai/client/q_glossy,ret_img,w_722/https://www.fuji-ta.com/wp-content/uploads/2020/12/merry-christmas-and-happy-new-year.jpg)
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(https://i.pinimg.com/originals/23/7e/09/237e09f19809d497ac97b99d6a707ad4.gif)
From Admin/Moderator team
To all Forum Members
& POIS Research Team
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My physical POIS symptoms are easier to describe than my cognitive POIS symptoms.
My physical symptoms: extreme exhaustion, dry fingertips
My cognitive symptoms:
the first day is usually the worst. My creative juices dry up. Nothing is exciting. I’m depressed, but in a way that’s difficult to describe. My emotions are flat. My decent sense of humor and my memory, concentration and my ability to smile, to appreciate beauty go right out the window. And the surreal symptom that’s most difficult to describe:
(https://pbs.twimg.com/profile_images/378800000246325434/c9d18272ca2d134adeddb94e89318078_400x400.jpeg)
Just for clarification: Is this [your set of cognitive POIS symptoms] with or without your TRT usage? :-)
Both. With TRT/daytime sleep aids, symptoms are drastically reduced. From suffering POIS agony for 4 days pre-TRT, to as little as hours today.
Pre-TRT, POIS symptom intensity was also far greater.
berlin1984, thanks, great question.
This is NOT my endorsement or recommendation for anyone else with POIS to try TRT! A good POIS treatment is between you and a trusted doctor. My preferred treatment can be unacceptably risky for many POISers
Example: taking the testosterone prescribed by my endocrinologist - -
my sperm count went to 0.00
Yes, I am now *infertile*
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(https://1.bp.blogspot.com/-10HOBu0FKDA/YR6Bk2OEY1I/AAAAAAAH1jk/Q8z5LC6zl_o-gU9mUjzpPaxSzFOshQmIgCLcBGAsYHQ/s16000/happy-15th-anniversary-gif-animated.gif)
It all started here on February 18th, 2007, when forum member John21 posted at our predecessor forum, the Naked Science Forum’s POIS thread.
https://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
We would all still be there today, but the owner of the Naked Science Forum’s POIS thread would not allow us to conduct internal member fundrai$ing for what is now the 2022 POIS Research Study:
https://poiscenter.com/forums/index.php?topic=3006.0
Million thanks, everyone - - old and new - - for making this the #1 forum on the internet for POIS!
I especially want to thank Quantum, my co-administrator, for being tremendously valuable and instrumental in raising greatly the level of scientific accomplishment - - including outreach to the medical community at large - in finding a solution to this misery we all call POIS!
Best wishes everyone for a Great Future in POIS discovery through forum teamwork!
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Well said Demo! A big thank you is in order to you, Quantum, Berlin, every contributor who has posted, and every reader who is trying solve this mystery. We hope that our strength and numbers continue to grow in our 16th year!
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Many thanks, Limejuice!
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Well said Demo! A big thank you is in order to you, Quantum, Berlin, and Limejuice! , every contributor who has posted, and every reader who is trying solve this mystery. We hope that our strength and numbers continue to grow in our 16th year!
Mod edit ;D
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Well said Demo! A big thank you is in order to you, Quantum, Limejuice, and berlin1984! , every contributor who has posted, and every reader who is trying solve this mystery. We hope that our strength and numbers continue to grow in our 16th year!
Another mod edit ;D
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Well said Demo! A big thank you is in order to you, berlin1984, [Limejuice], and Quantum! , every contributor who has posted, and every reader who is trying solve this mystery. We hope that our strength and numbers continue to grow in our 16th year!
Yet another mod edit ;D
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Quantum, you once recommended a Waldinger link to show my physician(s) an “intro” to understand POIS.
It was excellent! But I misplaced it and want to show another of my physicians.
I’m trying to convince him to prescribe Gabapentin for my POIS symptom of “fingertips feeling dry and aggravated” during POIS.
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Quantum, you once recommended a Waldinger link to show my physician(s) an “intro” to understand POIS.
It was excellent! But I misplaced it and want to show another of my physicians.
I’m trying to convince him to prescribe Gabapentin for my POIS symptom of “fingertips feeling dry and aggravated” during POIS.
Here it is: http://tau.amegroups.com/article/view/11107/11778 (http://tau.amegroups.com/article/view/11107/11778)
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Quantum, you once recommended a Waldinger link to show my physician(s) an “intro” to understand POIS.
It was excellent! But I misplaced it and want to show another of my physicians.
I’m trying to convince him to prescribe Gabapentin for my POIS symptom of “fingertips feeling dry and aggravated” during POIS.
Here it is: http://tau.amegroups.com/article/view/11107/11778 (http://tau.amegroups.com/article/view/11107/11778)
Many thanks, Quantum!
Other forum members might want to use this
above link to show to their physicians what POIS is all about - - for doctors who know nothing about POIS
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A fellow suffered messaged me regarding my regimen and I thought I'd share this info below.
"Hi there. While I've seen at least 50% improvement in symptoms, I still have a way to go.
I have a pretty extensive regimen and the core of it is addressing acetylcholine related imbalance.
I have low acetylcholinesterase levels (AChE) (I have blood tests supporting this) and this presents a unique problem which may be relevant for many of us dealing with POIS.
I'd recommend getting tested for this as it could save you some time/trouble either way and it's cheap.
https://www.ultalabtests.com/testing/search?__RequestVerificationToken=D3sk4rUwi28j0Lq6d43ylFTnJ_2N0cnY_J9o6wTEiAIkCBuIC-hOB7lCh2_8C9X4FC-V4kTcAsjaefTmxaB4mYfLXJA1&ItemName=cholinesterase (https://www.ultalabtests.com/testing/search?__RequestVerificationToken=D3sk4rUwi28j0Lq6d43ylFTnJ_2N0cnY_J9o6wTEiAIkCBuIC-hOB7lCh2_8C9X4FC-V4kTcAsjaefTmxaB4mYfLXJA1&ItemName=cholinesterase)
I take the h1 antihistamine chlorpheniramine and historically that's been very helpful- it has anticholinergic properties (lowers/blocks acetylcholine). Benedryl and hydroxizine also have anticholinergic properties, but don't appear to have the same SSRI type benefits as chlorpheniramine. I have to take oxybutynin or glycopyrrolate which are stronger anticholinergics and they do have their own unique side effects like blurry vision, photo sensitivity, etc. but they do reduce sweating and some of the cholinergic crisis type symptoms of POIS. I also take famotidine which is usually taken for acid reflex, but it has good antiinflammatory benefits. I like the flavanoid Luteolin and take DAO (histamine blocker)enzymes as well. Black seed oil is great. I'm on escitalopram (SSRI) and find generic adderall to be essential for me. Some nootropic options are Piracetam, centrophenoxine, bromantane among others to mop up excess acetylcholine.
I could go on and on, but I think it's important to rule out/rule in whether cholinesterase is at the root of your POIS. If you suspect adrenal/thyroid (HPA axis) related issues, getting that stuff tested too could be of great value. I'll stop here for now and will update or continue if you have any other questions. Best wishes to you and our fellow POIS sufferers.
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I just had cataract surgery this morning, maybe now I will see POIS more clearly?
:o
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Uff, hope you're fine!
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(https://i.pinimg.com/originals/f7/d1/f6/f7d1f63ceb524594b2740f9f027eb4d3.jpg)
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I suffer from POIS only when I masturbate and not when I have sex. This is based on my experience over last 10 years and its unmistakable.
Is there anyone else who faces the same issue? ???
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Very common :-)
Let's continue in this thread: https://poiscenter.com/forums/index.php?topic=2714
For me it's also greatly diminished nowadays when having sex.
Problem is that sex is not always available (even when having a partner).
And sometimes the day after sex, I crave more and masturbate >:(
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I suffer from POIS only when I masturbate and not when I have sex. This is based on my experience over last 10 years and its unmistakable.
Is there anyone else who faces the same issue? ???
Perhaps a combination of physical
AND psychological/emotional triggers are causative when masturbating? But less or none with sex?
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I wanted to share a ‘trick’ I just came up with.
In POIS, I get frustrated trying to be at the same
mental-level-of-efficiency
as I am when I’m out-of-POIS.
But when I’m POISed, I just can’t be the same high functioning Demo that I know and love!
So, to cope with the situation, I tell myself, briefly,
“I’m working at:
“The Speed of POIS” - -
(Compared to that familiar phrase:
“The Speed of Light”)
Working at a snail’s pace!
(https://previews.123rf.com/images/embroiderypatterns/embroiderypatterns1507/embroiderypatterns150701935/42587688-slow-steady-by-nature-move-at-a-snail-s-pace-and-reach-out-your-aim-.jpg)
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(http://www.gifanimations.com/samples/NDA3MmZjNWY0OGIzN2E=/OTJmYzVmNDhiMzdh/happy-thanksgiving-everyone-smiley-pilgrim-smiley-indian-turkey-pumpkin-animation.jpg)
I am VERY thankful for how this forum has helped my POIS & my life - - in many ways!
Thank you, everyone!
Demo
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(http://www.gifanimations.com/samples/NDA3MmZjNWY0OGIzN2E=/OTJmYzVmNDhiMzdh/happy-thanksgiving-everyone-smiley-pilgrim-smiley-indian-turkey-pumpkin-animation.jpg)
I am VERY thankful for how this forum has helped my POIS & my life - - in many ways!
Thank you, everyone!
Demo
I second this. Wouldn't be the person I am today without discovering this website. Thank you to all who have helped run POISCENTER, spread information and awareness about POIS and categorize all information we have available! I intend on staying relatively active here continuing to document my health journey and goals which is to completely reverse POIS symptoms (including any onset on symptoms).
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(http://www.gifanimations.com/samples/NDA3MmZjNWY0OGIzN2E=/OTJmYzVmNDhiMzdh/happy-thanksgiving-everyone-smiley-pilgrim-smiley-indian-turkey-pumpkin-animation.jpg)
I am VERY thankful for how this forum has helped my POIS & my life - - in many ways!
Thank you, everyone!
Demo
I second this. Wouldn't be the person I am today without discovering this website. Thank you to all who have helped run POISCENTER, spread information and awareness about POIS and categorize all information we have available! I intend on staying relatively active here continuing to document my health journey and goals which is to completely reverse POIS symptoms (including any onset on symptoms).
Thanks, Warrior!
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(https://images.immediate.co.uk/remote/m.media-amazon.com/images/S/pv-target-images/62d022ac6260b0428cde75cd5d7ad2b22ee9578140249cf718473f9e766e6399.jpg)
My favorite characterization
of my own POIS…
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It feels like that for me too. In POIS I struggle emotionally and physically.
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Merry Christmas all, thanks again to the admin team who runs this joint. ;D
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Marry Christmas.
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Merry Christmas everyone! Make it a good holiday season!
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Merry Christmas everyone! Make it a good holiday season!
Thanks, Limejuice.
Best wishes!!
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Merry Christmas all, thanks again to the admin team who runs this joint. ;D
Thank you, warrioronthetrot.
Best wishes!
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To: • The entire forum
• **NORD** (see discussion below)
• Dr. Tierney Lorenz
• Dr. Nicole Prause
(https://www.homemade-gifts-made-easy.com/image-files/xmerry-christmas-images-happy-holidays-joyous-prosperous-600x900.jpg.pagespeed.ic.Jv7GDLkhDd.jpg)
**NORD** - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2023 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
Work has already begun. You may have noticed my sending papers to them, correspondence, in-person meetings, etc. But realistically POISer recruitment, analysis, writeups, NORD evaluations will continue into 2023.
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I wish all members a very happy new year and if possible a cure for your Pois :)
It's the 30th year of sickness for me :)
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(https://www.funimada.com/assets/images/cards/big/anniversary-16-2.gif)
Coming soon! Just a few short days away! It all started here on February 18th, 2007, when forum member John21 posted at our predecessor forum, the Naked Science Forum’s POIS thread.
https://tinyurl.com/3wpxsa6e
We would all still be there today, but the owner of the Naked Science Forum’s POIS thread would not allow us to conduct internal member fundrai$ing for what is now the 2023 POIS Research Study:
https://poiscenter.com/forums/index.php?topic=3006.0
Million thanks, everyone - - old and new - - for making this the #1 forum on the internet for POIS!
I especially want to thank Quantum, my co-administrator, for being tremendously valuable and instrumental in raising greatly the level of scientific accomplishment - - including outreach to the medical community at large - in finding a solution to this misery we all call POIS!
And many, many thanks to our fellow administrators, Limejuice, and Berlin1984 for contributing their time - - and financial resources - - to this great commitment of ours: to stop POIS suffering!
Best wishes everyone for a Great Future in POIS discovery through forum teamwork!
-
(https://www.funimada.com/assets/images/cards/big/anniversary-16-2.gif)
Coming soon! Just a few short days away! It all started here on February 18th, 2007, when forum member John21 posted at our predecessor forum, the Naked Science Forum’s POIS thread.
https://tinyurl.com/3wpxsa6e (https://tinyurl.com/3wpxsa6e)
We would all still be there today, but the owner of the Naked Science Forum’s POIS thread would not allow us to conduct internal member fundrai$ing for what is now the 2023 POIS Research Study:
https://poiscenter.com/forums/index.php?topic=3006.0 (https://poiscenter.com/forums/index.php?topic=3006.0)
Million thanks, everyone - - old and new - - for making this the #1 forum on the internet for POIS!
I especially want to thank Quantum, my co-administrator, for being tremendously valuable and instrumental in raising greatly the level of scientific accomplishment - - including outreach to the medical community at large - in finding a solution to this misery we all call POIS!
And many, many thanks to our fellow administrators, Limejuice, and Berlin1984 for contributing their time - - and financial resources - - to this great commitment of ours: to stop POIS suffering!
Best wishes everyone for a Great Future in POIS discovery through forum teamwork!
Thanks for this reminder, Demo !
And thank you also for your good words about my involvement here on this forum (even if I am not here since the beginning, I found poiscenter about 8 years ago)
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Demo, Quantum, Limejuice and Berlin1984 our dream team.
Thanks a lot for all you are dooing here...
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Demo, Quantum, Limejuice and Berlin1984 our dream team.
Thanks a lot for all you are doing here...
Thank you, Hopeoneday! :)
Best wishes to you.
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(https://www.funimada.com/assets/images/cards/big/anniversary-16-2.gif)
It’s here! It all started here on February 18th, 2007, when forum member John21 posted at our predecessor forum, the Naked Science Forum’s POIS thread.
https://tinyurl.com/3wpxsa6e
Soon to arrive in 2007 was b_jim, with numerous contributions to aid the progress of POIS Research!
Then forum member Animus arrived, with the
most courageous journey ever in the history of POIS - - he concluded that surgically undergoing self-castration would cure his POIS.
And it did!
The Learning Channel's (TLC) feature TV presentation on Animus’ POIS:
https://m.youtube.com/watch?v=6sdaR18vw1s
You can also search “Animus” here at POISCenter or Naked Science Forum for more detailed information. Warning: this is a dangerous procedure, and scientifically unproven beyond the solitary experience of one member, Animus - - surgeons here wouldn’t do it, so he had to fly to India for the operation. At POISCenter, we have also looked at non-surgical ways to facilitate “dry orgasm”, which Animus attributes to his success.
We would all still be there at our old forum today, but the owner of the Naked Science Forum’s POIS thread would not allow us to conduct internal member fundrai$ing for what is now the
2023 POIS Research Study:
https://poiscenter.com/forums/index.php?topic=3006.0
Million thanks, everyone - - old and new - - for making this the #1 forum on the internet for POIS!
I especially want to thank Quantum, my co-administrator, for being tremendously valuable and instrumental in raising greatly the level of scientific accomplishment - - including outreach to the medical community at large - in finding a solution to this misery we all call POIS!
And many, many thanks to our fellow administrators, Limejuice, and Berlin1984 for contributing their time - - and financial resources - - to this great commitment of ours: to stop POIS suffering!
Best wishes everyone for a
Great Future in POIS discovery through forum teamwork!
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To read up on our history of the
POISCenter-funded 2023 POIS Research Study supervised by
NORD (NORD Website >> https://tinyurl.com/2s4dud24)
here is the POIScenter history thread:
https://tinyurl.com/4e9d3vy9
From POIS 2023 Research Team:
From: Dr. Tierney Lorenz
[Principal Investigator]
Date: February 18, 2023 at 1:07:55 PM PST
To: demografx
Cc: Dr Nicole Prause [co-Investigator]
Subject: RE: POISCenter 16th Anniversary message
Congratulations Demo! What an accomplishment to have made and maintained an active space for support and research!
From Demo to Dr. Lorenz & Dr. Prause:
(https://media0.giphy.com/media/7VyFWkKUSuoV0M3IZV/giphy.gif)
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I turn 77 today (Thursday).
Am I the oldest POISer here?
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Senior.. Happy birthday.
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Senior.. Happy birthday.
Thank you.
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Quantum, can we please put this MD in your list of doctors who are seeing POIS patients. I don’t think her approval is needed since she states publicly in the most recent POIS Google Alert:
“Martina Ambardjieva, MD, urology resident and in-house medical expert for sexual health website Bedbible, estimates that her urological examination office sees two to three patients, usually male, with the condition [POIS] per year.”
Martina Ambardjieva
Doctor of medicine
Univesity hospital
Univerzitet 'Sv. Kiril i Metódij' vo
Skopje, North Macedonia
I could not find email, street address, phone, etc.
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Quantum, can we please put this MD in your list of doctors who are seeing POIS patients. I don’t think her approval is needed since she states publicly in the most recent POIS Google Alert:
“Martina Ambardjieva, MD, urology resident and in-house medical expert for sexual health website Bedbible, estimates that her urological examination office sees two to three patients, usually male, with the condition [POIS] per year.”
Martina Ambardjieva
Doctor of medicine
Univesity hospital
Univerzitet 'Sv. Kiril i Metódij' vo
Skopje, North Macedonia
I could not find email, street address, phone, etc.
Ok, I will try to find her contact info.
Could you share the link of the POIS article or webpage you found her name on ?
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Quantum, can we please put this MD in your list of doctors who are seeing POIS patients. I don’t think her approval is needed since she states publicly in the most recent POIS Google Alert:
“Martina Ambardjieva, MD, urology resident and in-house medical expert for sexual health website Bedbible, estimates that her urological examination office sees two to three patients, usually male, with the condition [POIS] per year.”
Martina Ambardjieva
Doctor of medicine
Univesity hospital
Univerzitet 'Sv. Kiril i Metódij' vo
Skopje, North Macedonia
I could not find email, street address, phone, etc.
Ok, I will try to find her contact info.
Could you share the link of the POIS article or webpage you found her name on ?
Thank you, Quantum! The link is listed below in the latest POIS Google Alert:
https://tinyurl.com/ywjr3k96
Further links are embedded in this part of the article:
“Martina Ambardjieva, MD, urology resident and in-house medical expert for sexual health website Bedbible, estimates that her urological examination office sees two to three patients, usually male, with the condition per year.
“As far as I can tell, there are more people that need medical attention. Patients are often misdiagnosed and given the wrong treatment by other medical specialties,” says Ambardjieva. “Additionally, many people affected by POIS do not seek medical assistance. So POIS is likely under-reported and under-diagnosed.”
-
Quantum, can we please put this MD in your list of doctors who are seeing POIS patients. I don’t think her approval is needed since she states publicly in the most recent POIS Google Alert:
“Martina Ambardjieva, MD, urology resident and in-house medical expert for sexual health website Bedbible, estimates that her urological examination office sees two to three patients, usually male, with the condition [POIS] per year.”
Martina Ambardjieva
Doctor of medicine
Univesity hospital
Univerzitet 'Sv. Kiril i Metódij' vo
Skopje, North Macedonia
I could not find email, street address, phone, etc.
Ok, I will try to find her contact info.
Could you share the link of the POIS article or webpage you found her name on ?
Thank you, Quantum! The link is listed below in the latest POIS Google Alert:
https://tinyurl.com/ywjr3k96 (https://tinyurl.com/ywjr3k96)
Further links are embedded in this part of the article:
“Martina Ambardjieva, MD, urology resident and in-house medical expert for sexual health website Bedbible, estimates that her urological examination office sees two to three patients, usually male, with the condition per year.
“As far as I can tell, there are more people that need medical attention. Patients are often misdiagnosed and given the wrong treatment by other medical specialties,” says Ambardjieva. “Additionally, many people affected by POIS do not seek medical assistance. So POIS is likely under-reported and under-diagnosed.”
Ok, entry added.
I have found an email for her, too.
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Ok, [Dr. Martina Ambardjieva] entry added.
I have found an email for her, too.
Million thanks, Quantum!
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Nice one Demo.
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Nice one Demo.
Thank you.
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I suffer from POIS only when I masturbate and not when I have sex. This is based on my experience over last 10 years and its unmistakable.
Is there anyone else who faces the same issue? ???
nope, its always with ejaculation for me
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(https://i.ytimg.com/vi/TvRGpbta_cU/maxresdefault.jpg)
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(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
University of Chicago
POIS Research Study!
We are now working with the organizers of this POIS Study team who will be administering a survey asking patients with POIS various questions about their experience(s), such as how long they have had it, what treatments they have tried, how distressing it is, and much, much more so that the University of Chicago will have more categorical data about POIS. And the POIS Study will be published, hopefully in a prestigious medical journal!
You will be receiving a questionnaire in your email and notices will be posted here in a new University of Chicago/ POISCenter.com thread.
The more that forum members respond the better it is for statistical validity and population projections.
We expect the University of Chicago IRB (defined below) approval for a go ahead within 3-6 months.
The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.
https://research.oregonstate.edu/irb/what-institutional-review-board-irb
In our case, they are the University of Chicago IRB.
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To my fellow-USA folks…
(https://media.tenor.com/XDqGOoisXrQAAAAC/4th-of-july-happy-independence-day.gif)
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are they going to do proper research or just survey patients?
Define proper.
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(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
University of Chicago
POIS Research Study!
We are now working with the organizers of this POIS Study team who will be administering a survey asking patients with POIS various questions about their experience(s), such as how long they have had it, what treatments they have tried, how distressing it is, and much, much more so that the University of Chicago will have more categorical data about POIS. And the POIS Study will be published, hopefully in a prestigious medical journal!
You will be receiving a questionnaire in your email and notices will be posted here in a new University of Chicago/ POISCenter.com thread.
The more that forum members respond the better it is for statistical validity and population projections.
We expect the University of Chicago IRB (defined below) approval for a go ahead within 3-6 months.
The Institutional Review Board (IRB) is an administrative body established to protect the rights and welfare of human research subjects recruited to participate in research activities conducted under the auspices of the institution with which it is affiliated.
https://research.oregonstate.edu/irb/what-institutional-review-board-irb
In our case, they are the University of Chicago IRB.
The POIS IRB was approved!
-
(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
University of Chicago
POIS Research Study!
We are now working with the organizers of this POIS Study team who will be administering a survey asking patients with POIS various questions about their experience(s), such as how long they have had it, what treatments they have tried, how distressing it is, and much, much more so that the University of Chicago will have more categorical data about POIS. And the POIS Study will be published, hopefully in a prestigious medical journal!
You will be receiving a questionnaire in your email soon and notices will be posted here in a new University of Chicago/ POISCenter.com thread.
The more that forum members respond the better it is for statistical validity and POIS population projections.
-
(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
University of Chicago
POIS Research Study!
We are now working with the organizers of this POIS Study team who will be administering a survey asking patients with POIS various questions about their experience(s), such as how long they have had it, what treatments they have tried, how distressing it is, and much, much more so that the University of Chicago will have more categorical data about POIS. And the POIS Study will be published, hopefully in a prestigious medical journal!
You will be receiving a questionnaire in your email soon and notices will be posted here in a new University of Chicago/ POISCenter.com thread.
The more that forum members respond the better it is for statistical validity and POIS population projections.
(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
2023 POIS Research Survey!
Administrator Quantum has sent an email to all registered POISCenter.com forum members.
Message:
There is a new POIS survey online now! We strongly encourage you to take a few minutes to fill it out. The data collected will lead to a published article in a medical journal, so it will heighten the visibility and understanding of POIS among the medical community.
The link to the survey is:
*****PLEASE CLICK HERE:*****
https://redcap.uchicago.edu/surveys/?s=NAC9A38LJLA9HW4E
Here is a personal note from Olivia Paulsen, the main survey project manager:
“Tackling POIS has quickly become a passion project of mine. In the last year I have had the opportunity to speak with several POIS patients in an effort to help brainstorm solutions to this poorly recognized disorder. Talking to patients like yourselves has been an invaluable experience in helping me and other medical professionals better understand how POIS impacts your lives. By completing this survey you are helping expand healthcare providers’ knowledge on the etiology of this condition which will help us come up with more useful treatment options.
We sincerely appreciate your authenticity when filling out this survey; your contribution is making a positive difference!
Olivia Paulsen, third-year US medical student”
Olivia works with Dr Omer Raheem and
Dr Rachel Rubin, two distinguished medical experts who study POIS!
From Dr Rachel Rubin on Twitter:
(https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcRv22DMiG8o3_GhRbozPYGiikHGk7BnTkOrww&usqp=CAU)
(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
University of Chicago
2023 POIS Research Survey!
https://tinyurl.com/4fys8uh7
=============================
Our POIS Coordinator,
Olivia Paulsen, reports
that we now have
295 306 370 || 395 || respondents!!
=============================
“370! I hope we can get to 400!”
wrote Olivia Paulsen in an email to me.
This is the largest focus-group ever in POIS history!
Keep them coming in, everybody!
Come be a part of this *historical* POIS Survey!
(https://media4.giphy.com/media/Qa4jBXlr57JAmZi3Am/giphy.gif)
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I have a question guys.
Is this Pois like life threatening or dangerous?
Finally made an account here though. Happy to be the part of community. 😊
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Up!
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(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
University of Chicago
POIS Research Survey!
https://tinyurl.com/4fys8uh7
Nice to hear some doctors dedicating time for POIS
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I have a question guys.
Is this Pois like life threatening or dangerous?
Finally made an account here though. Happy to be the part of community. ????
Welcome to the forum, Luciferaspois !
No, POIS is not life-threatening, but it is "quality-of -life threatening". Living with POIS can have a heavy toll on your quality of life. Also, for some, it causes them to drop out of college because of the brain fog or memory problems they have when in POIS.
Some members may have depression, secondary to POIS. If left untreated, and if suicidal thoughts are present, then in this case, it can be dangerous. But not POIS itself, because symptoms disappear by themselves in about one week, on average.
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(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
***PLEASE CLICK HERE TO PARTICIPATE! ***
POIS Survey:
https://tinyurl.com/4fys8uh7
Thanks, Limejuice, for this gif!
(https://media0.giphy.com/media/KA3U2zkVhsYqi176Cq/giphy.gif)
Best,
Demo
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(https://cdn.dribbble.com/users/2522867/screenshots/5459205/8b._happy_halloween_gif.gif)
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(https://www.uchicagomedicine.org/-/media/images/ucmc/landing-pages/ucm-logo.png?h=196&w=568&la=en&hash=DD221A8F15917C5BAF575F31BD5B1E7F)
University of Chicago
2023 POIS Research Survey!
Thank you everyone for your patience in our keeping the announcements up and for your solid participation!
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(https://i.pinimg.com/originals/0f/4f/6a/0f4f6a8c800c9f03c93c9ff4a1093d7a.gif)
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(https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcSXztuqli-2wHbStIO_xWahuldK7W3BH8X20w&usqp=CAU)
Thank you all for being Wonderful & Great Forum partners since February, 2007!
Nearly 17 years of slow but solid progress in defeating POIS!
cc: also sent to all outside researchers who have helped.
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Thanks for the support.
Happy holydays to all.
-
(https://media4.giphy.com/media/srR01dbJCU20eXrEEA/giphy.gif)
…in making the 2023 University Of Chicago POIS Study the largest repository *ever* of POIS Research cases!
(https://cdn-res.keymedia.com/cms/images/us/023/0308_637757157233217500.jpg)
Best wishes from your
Admin Team!
Quantum
Limejuice
Berlin1984
demografx
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Best wishes for 2024 8)
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(https://media4.giphy.com/media/srR01dbJCU20eXrEEA/giphy.gif)
…in making the 2023 University Of Chicago POIS Study the largest repository *ever* of POIS Research cases!
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Best wishes for 2024 8)
Thank you and best wishes back, b_jim!
And thank you for your teriffic contributions here
since 2007, starting with our POISCenter predecessor @ Naked Science Forum - -
almost close to 20 years ago!!!
-
Yeah it's a satisfaction that we created a community dispite we didn't succeed to solve the problem yet.
Im' happy to see that lot of members are still very active here ;D
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Thanks for the support.
Happy holydays to all.
Belated thank you, Hopeoneday! :)
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Thank you very much for your reply, this new [POIS] study represents a ray of hope for our community, and we'll be following it closely. It's also great news that the University of California at Los Angeles is a major scientific partner.
Have a nice day
Gogo, also - - in case you don’t know about this recent POIS Study, just begun - - with 500+ POISer participants!
[for more info on U of Chicago POIS Study, see above posts in THIS thread]
(https://media4.giphy.com/media/srR01dbJCU20eXrEEA/giphy.gif)
…in making the 2023 University Of Chicago POIS Study the largest repository *ever* of POIS Research cases!
-
(https://media4.giphy.com/media/srR01dbJCU20eXrEEA/giphy.gif)
…in making the 2023 University Of Chicago POIS Study the largest repository *ever* of POIS Research cases!
-
(https://previews.123rf.com/images/meineurlaubswelt/meineurlaubswelt1711/meineurlaubswelt171100244/90911351-new-year-card-with-good-wishes-2024.jpg)
And best wishes to all of us for concrete advancements for
POIS in 2024!!
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(https://media.nature.com/lw1024/magazine-assets/d41586-020-03324-y/d41586-020-03324-y_18614802.jpg)
”Can autoimmune diseases be cured? Scientists see hope at last”
http://tinyurl.com/2dzdszrn
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I submitted this question:
“What is a treatment for [POIS]
post-orgasmic illness syndrome?”
(https://www.geeky-gadgets.com/wp-content/uploads/2023/11/Perplexity-AI-CEO-interview.jpg)
The AI answer was:
https://www.perplexity.ai/search/e437379c-c953-465c-aa6e-f992ccb549e5
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I submitted this question:
“What is a treatment for [POIS]
post-orgasmic illness syndrome?”
(https://www.geeky-gadgets.com/wp-content/uploads/2023/11/Perplexity-AI-CEO-interview.jpg)
The AI answer was:
https://www.perplexity.ai/search/e437379c-c953-465c-aa6e-f992ccb549e5 (https://www.perplexity.ai/search/e437379c-c953-465c-aa6e-f992ccb549e5)
This is exaclty the kind of answer to expect from AI chatbots at this point - they sum up what they can find on the internet.
I did not know about Perplexity - it seems that many new chatbots are out there, now .
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I submitted this question:
“What is a treatment for [POIS]
post-orgasmic illness syndrome?”
(https://www.geeky-gadgets.com/wp-content/uploads/2023/11/Perplexity-AI-CEO-interview.jpg)
The AI answer was:
https://www.perplexity.ai/search/e437379c-c953-465c-aa6e-f992ccb549e5 (https://www.perplexity.ai/search/e437379c-c953-465c-aa6e-f992ccb549e5)
This is exactly the kind of answer to expect from AI chatbots at this point - they sum up what they can find on the internet.
I did not know about Perplexity - it seems that many new chatbots are out there, now .
Yes, proves your point that medical issues are not ideal candidates.
But “summing up internet finds” as you describe - - is beneficial to me.
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Thank you Demo!
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Thank you Demo!
My pleasure, Limejuice!
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For your reference - -
POIS Research Study Teams
(POISCenter forum post links)
NORD researchers:
https://tinyurl.com/4a5jvz7s
Univ of Chicago researchers:
http://tinyurl.com/nau35dcy
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1st video: POST-ORGASMIC ILLNESS SYNDROME (POIS)
(https://i.ytimg.com/vi/Esfs4MIH1j0/maxresdefault.jpg)
https://youtu.be/Esfs4MIH1j0?si=TIVHdExpfDwa5VV4
2nd video: TREATMENT FOR POIS
https://youtu.be/iwWOa-EO8hI?si=2Wx5U-8QKmoHwvbQ
Here’s Olivia Paulsen, with two [2] videos (above). Olivia is the Coordinator of University of Chicago’s POIS Research Study.
——————————-———————-————————-——
Thank you again, EVERYONE, for cooperating with her!
Demo
—————————-———————-—————————-——
UPDATE: several scientific POIS Study papers will be published by the distinguished panel of the University of Chicago School of Medicine - - in prestigious medical journals.
This panel is a very impressive array of international medical scholars and physicians.
I was very fortunate to attend and contribute to their most recent ZOOM conference discussing POIS in-depth.
The soon-to-be-published articles will use the POIS-related information
that you all provided!
We are POISed to soon be on
The Medical Map!!
T h a n k Y o u :)
Demo
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(https://as2.ftcdn.net/v2/jpg/01/38/14/97/1000_F_138149749_rpwh1mRPZjpRXHzpRdACNe2hFGP4nc9U.jpg)
It’s here! It all started on February 18th, 2007, when forum member John21 posted at our predecessor forum, the Naked Science Forum’s POIS thread.
https://tinyurl.com/3wpxsa6e
Soon to arrive in 2007 was b_jim, with numerous contributions to aid the progress of POIS Research!
Then forum member Animus arrived, with the
most courageous journey ever in the history of POIS - - he concluded that surgically undergoing self-castration would cure his POIS.
And it did!
Animus, who underwent multiple surgeries so he would stop producing semen- which included oriechtomy (castration), TURP (shrinking the prostate) , and removal of the seminal vesicles. So now he has “dry ejaculation”, and no longer suffers from POIS after orgasm.
The Learning Channel's (TLC) did a feature TV presentation on Animus’ POIS:
https://m.youtube.com/watch?v=6sdaR18vw1s
You can also search “Animus” here at POISCenter or Naked Science Forum for more detailed information. Warning: this is a dangerous procedure, and scientifically unproven beyond the solitary experience of one member, Animus - - surgeons here wouldn’t do it, so he had to fly to India for the operation. At POISCenter, we have also looked at non-surgical ways to facilitate “dry orgasm”, which Animus attributes to his success.
We would all still be there at our old forum today, but the owner of the Naked Science Forum’s POIS thread would not allow us to conduct internal member fundrai$ing for what is now the
NORD/POIS Research Study:
https://poiscenter.com/forums/index.php?topic=3006.0
Million thanks, everyone - - old and new - - for making this the #1 forum on the internet for POIS!
I especially want to thank Quantum, my co-administrator, for being tremendously valuable and instrumental in raising greatly the level of scientific accomplishment - - including outreach to the medical community at large - in finding a solution to this misery we all call POIS!
And many, many thanks to our fellow administrators, Limejuice, and Berlin1984 for contributing their time - - and financial resources - - to this great commitment of ours: to stop POIS suffering!
Best wishes everyone for a
Great Future in POIS discovery through forum teamwork!
-
“Women with Postorgasmic Illness Syndrome: Data From an International Prospective Registry”
Presented at a recent Conference by Olivia Paulsen, our University of Chicago School of Medicine POIS Research Study Coordinator
This data includes information you all provided here. More to come!
Paulsen, O1; Banton, J2; Ikedionwu, I3; Sun, J3; Bronson, I4; Raheem, O5; Pearlman, A6; Duran, MB7; Serefoglu, EC8; Rubin, R9
1 - Idaho College of Osteopathic Medicine
2 - New York Institute of Technology College of Osteopathic Medicine at Arkansas State University
3 - University of Chicago Biological Sciences Division Pritzker School of Medicine
4 - UMass Chan Medical School
5 - University of Chicago, Department of Urology
6 - Iowa State University, Department of Urology
7 - Pamukkale University, Department of Urology
8 - Biruni University, Department of Urology
9 - Georgetown University, Department of Urology
Introduction:
Postorgasmic Illness Syndrome (POIS) describes a debilitating collection of flu-like or allergy-like symptoms experienced post-orgasm. The disorder can be divided into primary or secondary subtypes, and even further into seven clusters. POIS is considered a rare, poorly understood condition that largely affects people with penises.
Objective:
To assess females’ experiences with POIS, including symptomology, treatments trialed, and sexual function via the Female Sexual Function Index-6 (FSFI-6). To also compare their experiences with men who have POIS.
Methods:
An IRB-approved RedCAP survey was created and administered in September of 2023. The anonymous survey was distributed to the following online platforms: Twitter, Instagram, email, Reddit to include r/POIS and r/SampleSize, and the POISCenter forum. The survey was closed on November 5th, 2023 and descriptive statistics were performed.
Results:
Of 424 records, nineteen indicated they have a vulva and vagina. Authors individually and thoroughly assessed all nineteen records and eliminated duplicate responses, records that did not meet any of the established symptom criteria, and incomplete responses. After this, ten records were included in the statistical analysis. Participants identified as white/caucasian (7), Hispanic/Latina (2), and Iranian/Persian (1). One of the ten respondents has been diagnosed by a medical professional. Five participants indicated that they experience a “sensation of a flu-like state.” Three experience “extreme fatigue or exhaustion.” One experiences “feverishness or perspiration.” One experiences “mood instability and/or irritability.” Providers visited for their symptoms included primary care, endocrinologist, obstetrician/gynecologist, and mental health. Treatments trialed include allergy medications, anti-depressants, prednisolone, pelvic floor physical therapy, and pain relievers (i.e., NSAIDs). Seven participants completed the FSFI-6; three had a score of less than or equal to 19 (the cutoff for female sexual dysfunction(FSD)) and four had a score of greater than 20.
Conclusions:
POIS has been viewed as a “male-only” condition. While it largely impacts men, this data suggests that women are not immune to it and when compared to men, their experiences vary. From this prospective registry, the most common symptoms experienced by women were “flu-like.” Additionally, none of the participants visited a urologist compared to 65% of men who have. While nearly 60% of the FSFI-6 respondents are not classified as having FSD, it is important to note that only one participant stated they were “very satisfied” with their sex life. More data is needed on this understudied population affected by POIS.
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TODAY, February 29, 2024 is:
(https://images.news18.com/ibnlive/uploads/2023/02/rare-disease-day-2023-16775189853x2.jpg?impolicy=website&width=360&height=240)
http://tinyurl.com/2t5cun66
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
(NORD - National Organization for Rare Disorders) is the supervising organization for our NORD/POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
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Came across this by coincidence.
They seem to provide free phone consultation for POIS
https://www.mazemenshealth.com/blog/pois-syndrome/
I have no idea if something behind it as normally nothing is really for free!
Video on facebook also from mazemenshealth ---> https://www.facebook.com/reel/364437099851902
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(https://i.gifer.com/1T8L.gif)