Author Topic: This may seem like a familiar place.  (Read 376957 times)

Vincent M

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Re: This may seem like a familiar place.
« Reply #870 on: June 09, 2013, 12:24:18 PM »
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.
« Last Edit: June 10, 2013, 09:22:52 AM by Vincent M »
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

Stef

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Re: This may seem like a familiar place.
« Reply #871 on: June 10, 2013, 04:28:33 PM »
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


Jon

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Re: This may seem like a familiar place.
« Reply #872 on: June 11, 2013, 02:14:55 AM »
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.
My cognitive symptoms started suddenly during an orgasm when I was 16. I then developed my POIS and cognitive/physical symptoms became very severe. Had to leave work and school. This year I had 60% success with regimen. Recently the symptoms have gotten worse again. Let's help each other.

LAPOISSE

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Re: This may seem like a familiar place.
« Reply #873 on: June 11, 2013, 06:11:12 AM »
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

Vincent M

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Re: This may seem like a familiar place.
« Reply #874 on: June 11, 2013, 11:49:23 AM »
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.
Taking ginger tea, no wheat, fenugreek+green tea/garlic, saw palmetto, niacin, boswellia, huperzine, B complex and nutmeg. See my treatment summary post for more info: http://poiscenter.com/forums/index.php?topic=81.msg3513#msg3513

Ccconfucius

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Re: This may seem like a familiar place.
« Reply #875 on: June 11, 2013, 12:55:15 PM »
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.

Daveman

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Re: This may seem like a familiar place.
« Reply #876 on: June 11, 2013, 03:20:48 PM »
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.

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!

FornicationDENIED

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Re: This may seem like a familiar place.
« Reply #877 on: June 11, 2013, 05:29:49 PM »
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.
« Last Edit: June 11, 2013, 07:13:21 PM by FornicationDENIED »

poiseidon

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Re: This may seem like a familiar place.
« Reply #878 on: June 11, 2013, 08:36:03 PM »
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
After spending loads on supplements I found out that the only thing that works is abstinence. Full stop. And it's free.
Meditation if done correctly is great too.
Also avoiding computers produce faster recoveries and fewer temptations.

demografx

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Re: This may seem like a familiar place.
« Reply #879 on: June 11, 2013, 11:47:27 PM »
"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!



Please see our Welcome Page for more specific info in dealing with doctors. YOUR WAY!
http://tinyurl.com/lwwns6z

« Last Edit: June 11, 2013, 11:55:43 PM by demografx »
Usually have major POIS-reduction, 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.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.

Jon

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Re: This may seem like a familiar place.
« Reply #880 on: June 11, 2013, 11:59:21 PM »
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.
My cognitive symptoms started suddenly during an orgasm when I was 16. I then developed my POIS and cognitive/physical symptoms became very severe. Had to leave work and school. This year I had 60% success with regimen. Recently the symptoms have gotten worse again. Let's help each other.

demografx

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Re: This may seem like a familiar place.
« Reply #881 on: June 12, 2013, 01:13:06 AM »
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!
Usually have major POIS-reduction, 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.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.

Daveman

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Re: This may seem like a familiar place.
« Reply #882 on: June 12, 2013, 07:20:05 AM »
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!

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!

Stef

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Re: This may seem like a familiar place.
« Reply #883 on: June 12, 2013, 07:35:52 AM »
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  






 
« Last Edit: June 14, 2013, 10:15:34 AM by nordnurse »

demografx

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Re: This may seem like a familiar place.
« Reply #884 on: June 13, 2013, 03:58:22 AM »
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!
« Last Edit: June 14, 2013, 05:28:07 AM by demografx »
Usually have major POIS-reduction, 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.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.