Author Topic: Personal POIS Summaries and Histories.  (Read 78395 times)

Quantum

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Re: Personal POIS Summaries and Histories.
« Reply #80 on: August 01, 2016, 09:52:14 AM »
crossed post from http://poiscenter.com/forums/index.php?topic=2335.msg19420#msg19420


Quantum, I have seen you asked few times for some description of symtpoms/remedy of poisers in order to make a chart and try to identify some predictable patterns accoridng to pois type. I believe it's a great idea so I will start here (not sure if it is the appropriate place though):

My symptoms:
psychological: concentration (always), memory (3 to 6 days), social skills (5 to 6 days), bad mood (3 to 4 days), stress (3 to 4 days)
physical: difficulty breathing (2 days), red eyes (4 to 5 days), intense fatigue (3 to 6 days), easily fatigue at sport (2 days), insomnia (always).

What is working for me:
complement: magnesium, zinc, b complex
meds: right after O mythelase + lecithin (get me rid of 90% of my symptoms). Then taking it once/day for 3 days.
Other: abstinence, sport, fasting, meditation.

I don't know if it is precise enough because I don't have any scientific methodology.
I strongly encourage mythelase + lectithin, it is working very well for me since 6 months.

Cheers,

POISse
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demografx

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Re: Personal POIS Summaries and Histories.
« Reply #81 on: August 01, 2016, 10:47:02 AM »

...POIS is still a "puzzle".


Even after nearly 10 years of intense forum scrutiny!
10 years of significant 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.

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

Spartak

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Re: Personal POIS Summaries and Histories.
« Reply #82 on: August 17, 2016, 09:57:01 PM »
Hi guys,I hope that you will be able to understand my English,I hope that you will not have anything against if I share in short  lines boring story abuot my life before I post about symptoms.

I am 1/4 of the century old(25) ,I notticed that I feel bad after O in 2011. . if I remember well,only because I started to expirience headaches after O,but when I think about other
symtoms,I belive  that I can track P.O.I.S for at least 10 years,back in 2006. I was quite often anxius,felt rejected without reason,started to losing interest for school etc,been without energy from time to time,and couldn't stop thinking about stupid things I belive that that was begining of my P.O.I.S,altough maybe it started earlier,just symtoms were too mild.
I lived quite normal without any idea that I have P.O.I.S ,but I knew that something is not ok with me,since I felt bad too often.
And after some time I started to feel constantly bad,I had O every day,many times more then once,and I can say that I lost plenty of time in constant P.O.I.S.  I was always among people,had great social life(altough I was very unhappy around people,and when among friends I couldn't stop analyzing stupid things),was bad in school and in general very problematic,since I always felt rejected.
In between I was into bodybuilding,I used bunch of supplements,which made me more outgoing,but unfortunatelly guite ignorant toward other people.
When I realised what is the problem (2011)I tried to quit masturbation and sex (due I guess good looks and fake confidence ,which I used to cover my poor self confidence,I had lot of  succes with girls,or to be more objective they had succes with me,I sufferd a lot)
and finally in (not sure)2013 or 2014,I avoid O for more then 2days,and finally after 3rd day without O,I felt great (almost)1st time after years of suffering.Life had meaning againg.Since then I am in war with need,but until recently(relief experiments) I was more good then bad(pois).
Then I spent a lot of time in clearing my mind from post P.O.I.S effects ,I observed other people,read phylogical ,motivational and many other  books
and finally after some time I built completly new personality,mindset,system of values,and in general became better person.Ofc POIS became  much harder to handle after that.

Before P.O.I.S I was very inteligent and motivated kid,the best sudent in class,curious about everything and with very wide spectrum of knowledge for average central European kid,in short kid with great future.(no narcisstic intenions)
Becase of P.O.I.S I haven't finnished any bigger schools,went to university(more then one) but haven't finnished any.Worked on various jobs with more or less (more less) succes
,because my P .O.I.S makes me pretty unfunctional for 2days.

And now finally about P.O.I.S,My POIS is not always the same,there are hudge variations in severity of the symptoms,or at least I have that impression ,but these are my impressions:

1.I think that the worst symptom for me is Anhedonia,beacause I simply can not feel pleasure or satstaftion durring P.O.I.S.
I found some things that gave me relief from some symptoms,but nothing really affected that.

So that is what makes me think that if I would only be able to feel positive emotions,POIS would be 1000x easier to handle.

2a.Anxiety(scared of people,constant guilt,low self confidence etc,depression,constant stupid thoughts usually very frustrating(maybe adhd symptoms in mix with nr1 ( Anhedonia ),Aphaty ,FATIGUE(especially that hopless feeling in cheast and throath),and all similar symptoms 2b low memory,poor concentration,simply I feel stupid,very sensitive mind to any stimilation,disconected,brain fog
3.Headache,no energy,weak

5 nightmares,claustrophobia ,sadness,suicidal thoughts,blurry visionb etc,those I used to ignore
 
Since I am not in Pois at the monent,I probably forgot some.Don't know for you guys but always after POIS ,I don't really have clear memory about POIS days.


POIS duration is 2 days( never less(and even with relief methods there is clear distiction between 1st and 2nd day symptoms,with some relief methods I tried it went really bj Anhedonia ad and last more,and after some I developed strange symptoms).

1st day is really bad,withou relief methods I can hardly speak,fatigue,weak,headache,mostly in bed,disconected
etc
2nd day more borring then fatigue like,mind is clearer ,but more sensitive ,since my emotions are comming back I feel wrong emotions and stilk can't feek pleasure as I will norally feel due sensitive mind I can't handle thoughts.
Both are quite anxious in differente ways,and in both I feel depersonalised.

In past two months I tried many relief methods,but since I recently quited with experiments,I will wait (3 weeks rule) few more days and then share what gave me some relief and what was harmful in my case.

I can say that almost all things I tried had side effects,and despite positive effects I was forced to stop taking them.
My main sympthom(1.),which is with brain fog(very positive improovent with relief methods) I belive are the main reason for de-personalisation and for general POIS feeling in my case,(1.)was not affected by any relief method,also as part of that subjective Pois feeling(like 1day feeling,2nd day feeling) and duration(except in a bad way).

With respect to all brothers in arms ,Spartak
« Last Edit: August 17, 2016, 11:38:14 PM by Spartak »
no sugar diet helps me a tiny bit, also makes my mind much calmer in general. Sugar is definitely something my body does not handle well. Also I noticed that other inflammations like a hangover are better since I quit sugar. I avoid sweet fruits as well.

Quantum

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Re: Personal POIS Summaries and Histories.
« Reply #83 on: August 18, 2016, 07:16:21 AM »
Thank you, Spartak, for this detailed account of your POIS history !  Thank you for having taken the time to write and share this on the forum.

I will stay connected to hear about what brings you some relief, and hope to be able to integrate some of your data in my POIS types chart.

I wish you to find a way to adapt to POIS, like abstaining for longer periods of time.  I know it is harder when younger, but for us, it sure has advantages.  What helps me to extend to a release once a week or once every two weeks is to find other significant source of pleasure in life, like playing sports or playing music.  I wish you to find something of this kind in your life, and enjoy more POIS-free days.



You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

baseballplayer20

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Re: Personal POIS Summaries and Histories.
« Reply #84 on: August 18, 2016, 11:32:07 PM »
Dear Fellow POISers,

I have been following the POIS Center forum for a while, and I am immensely grateful for all of the treatments, experiences, and stories you all have shared.  I feel that it is time to join you, and share my experience.  I have suffered from POIS since puberty, and my symptoms have progressively worsened from 1-2 days to a full 7 days after emissions.  I have less symptoms from nocturnal emissions, and most symptoms from an induced emission.  Being in medical school, I was able to manage with a strict abstinence routine, however recently after taking Tramadol for a month began to experience spontaneous fluid emissions (simply coming in contact with shorts, sheets, and in some cases from laughter or simply walking across the room).  These have not stopped even after stopping Tramadol, and I needed to take a leave of absence from school. 

I have read that Prozac (fluoxetine) can be very beneficial in terms of increasing ejaculatory latency time, in theory preventing spontaneous and nocturnal emissions.  I noticed that a few people have had mixed results with Prozac, anyone else tried it, or have any advice with regards to SSRI's/other medicines that reduce frequency of emissions?

My experience with Tramadol led me to broaden my perspective with regards to the autoimmune theories, as my condition moves from POIS to POIS + PGAD symptoms.  I am now very curious as to whether POIS Syndrome results from a spinal cord abnormality.  Dr. Komisaruk recently spoke on Tarlov cysts in Persistent Genital Arousal Disorder (https://www.youtube.com/watch?v=gJvfyTvqs38), and mentions that Tarlov cysts could cause other sexual disturbances given they take place in the region responsible for many sexual functions.  Looking further, there is some recent research on the way in which the GRP system in the spinal cord regulates ejaculation (http://www.ncbi.nlm.nih.gov/pubmed/25426011), and on the fact that there is possibly an independent itch driven mechanism from this system - raising the possibility that POIS is not a primary IgE allergy mediated process.  There is also research on the role of GRP in immune system activation (http://www.ncbi.nlm.nih.gov/pubmed/22735756).

In brief, this seems to raise the question for me as to whether POIS could be the result of neurological disease in the spinal cord (Tarlov cyst or other lesion), that is inflamed by ejaculation.  I have severe constipation, urinary retention, and pelvic pain after ejaculation, which can all be seen in Tarlov cyst disease.  I am going to have an MRI of my spine soon, and I'm curious to know if anyone else has had a spinal MRI? Or similar symptoms including pain with sitting down, hyper-sensitive feelings or decrease of sensation in the lower body.

I would like to end this post by emphasizing that my medical knowledge is rather limited, I am very naive in my medical training, and these are simply ideas that I had. 


notmythirdaccount

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Re: Personal POIS Summaries and Histories.
« Reply #85 on: August 19, 2016, 10:48:57 AM »
Dear Fellow POISers,

I have been following the POIS Center forum for a while, and I am immensely grateful for all of the treatments, experiences, and stories you all have shared.  I feel that it is time to join you, and share my experience.  I have suffered from POIS since puberty, and my symptoms have progressively worsened from 1-2 days to a full 7 days after emissions.  I have less symptoms from nocturnal emissions, and most symptoms from an induced emission.  Being in medical school, I was able to manage with a strict abstinence routine, however recently after taking Tramadol for a month began to experience spontaneous fluid emissions (simply coming in contact with shorts, sheets, and in some cases from laughter or simply walking across the room).  These have not stopped even after stopping Tramadol, and I needed to take a leave of absence from school. 

I have read that Prozac (fluoxetine) can be very beneficial in terms of increasing ejaculatory latency time, in theory preventing spontaneous and nocturnal emissions.  I noticed that a few people have had mixed results with Prozac, anyone else tried it, or have any advice with regards to SSRI's/other medicines that reduce frequency of emissions?

My experience with Tramadol led me to broaden my perspective with regards to the autoimmune theories, as my condition moves from POIS to POIS + PGAD symptoms.  I am now very curious as to whether POIS Syndrome results from a spinal cord abnormality.  Dr. Komisaruk recently spoke on Tarlov cysts in Persistent Genital Arousal Disorder (https://www.youtube.com/watch?v=gJvfyTvqs38), and mentions that Tarlov cysts could cause other sexual disturbances given they take place in the region responsible for many sexual functions.  Looking further, there is some recent research on the way in which the GRP system in the spinal cord regulates ejaculation (http://www.ncbi.nlm.nih.gov/pubmed/25426011), and on the fact that there is possibly an independent itch driven mechanism from this system - raising the possibility that POIS is not a primary IgE allergy mediated process.  There is also research on the role of GRP in immune system activation (http://www.ncbi.nlm.nih.gov/pubmed/22735756).

In brief, this seems to raise the question for me as to whether POIS could be the result of neurological disease in the spinal cord (Tarlov cyst or other lesion), that is inflamed by ejaculation.  I have severe constipation, urinary retention, and pelvic pain after ejaculation, which can all be seen in Tarlov cyst disease.  I am going to have an MRI of my spine soon, and I'm curious to know if anyone else has had a spinal MRI? Or similar symptoms including pain with sitting down, hyper-sensitive feelings or decrease of sensation in the lower body.

I would like to end this post by emphasizing that my medical knowledge is rather limited, I am very naive in my medical training, and these are simply ideas that I had.

I have a question regarding the Tarlov cyst. I've experienced POIS for at least 10 years and frequently try to remember anything that may help me connect the dots to this terrible condition.

What interests me about that cyst theory is that it has to do with the spine. I don't have any spinal pain unless I'm sitting for a while without much movement. However, as ridiculous as it sounds, when I was maybe 12 or 13 I vividly remember climbing up a tree (the height of a typical single-floor house) and falling. I came out unscathed, I think, but I do remember hitting the lower section of my back multiple times. I must have hit 3-5 medium branches on the way down, and what's weird is that I landed on my back as well. I remember having some tension through the middle and lower parts of my back, but nothing that I couldn't get better from.

Would this sort of event trigger any potential spinal issues down the road? Or are we talking about insane events like getting rear ended by a semi?

Quantum

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Re: Personal POIS Summaries and Histories.
« Reply #86 on: August 19, 2016, 12:15:26 PM »
Dear Fellow POISers,

I have been following the POIS Center forum for a while, and I am immensely grateful for all of the treatments, experiences, and stories you all have shared.  I feel that it is time to join you, and share my experience.  I have suffered from POIS since puberty, and my symptoms have progressively worsened from 1-2 days to a full 7 days after emissions.  I have less symptoms from nocturnal emissions, and most symptoms from an induced emission.  Being in medical school, I was able to manage with a strict abstinence routine, however recently after taking Tramadol for a month began to experience spontaneous fluid emissions (simply coming in contact with shorts, sheets, and in some cases from laughter or simply walking across the room).  These have not stopped even after stopping Tramadol, and I needed to take a leave of absence from school. 

I have read that Prozac (fluoxetine) can be very beneficial in terms of increasing ejaculatory latency time, in theory preventing spontaneous and nocturnal emissions.  I noticed that a few people have had mixed results with Prozac, anyone else tried it, or have any advice with regards to SSRI's/other medicines that reduce frequency of emissions?

My experience with Tramadol led me to broaden my perspective with regards to the autoimmune theories, as my condition moves from POIS to POIS + PGAD symptoms.  I am now very curious as to whether POIS Syndrome results from a spinal cord abnormality.  Dr. Komisaruk recently spoke on Tarlov cysts in Persistent Genital Arousal Disorder (https://www.youtube.com/watch?v=gJvfyTvqs38), and mentions that Tarlov cysts could cause other sexual disturbances given they take place in the region responsible for many sexual functions.  Looking further, there is some recent research on the way in which the GRP system in the spinal cord regulates ejaculation (http://www.ncbi.nlm.nih.gov/pubmed/25426011), and on the fact that there is possibly an independent itch driven mechanism from this system - raising the possibility that POIS is not a primary IgE allergy mediated process.  There is also research on the role of GRP in immune system activation (http://www.ncbi.nlm.nih.gov/pubmed/22735756).

In brief, this seems to raise the question for me as to whether POIS could be the result of neurological disease in the spinal cord (Tarlov cyst or other lesion), that is inflamed by ejaculation.  I have severe constipation, urinary retention, and pelvic pain after ejaculation, which can all be seen in Tarlov cyst disease.  I am going to have an MRI of my spine soon, and I'm curious to know if anyone else has had a spinal MRI? Or similar symptoms including pain with sitting down, hyper-sensitive feelings or decrease of sensation in the lower body.

I would like to end this post by emphasizing that my medical knowledge is rather limited, I am very naive in my medical training, and these are simply ideas that I had.


Welcome to the forum, baseballplayer20, and thanks for joining, and sharing your POIS history !

I am sorry to hear that Tramadol has worsened POIS problem and have caused you to put put your medical studies on hold.  You even mention to now have PGAD ( Persistent genital arousal disorder ), and I think it is the first time I hear of a POIS sufferer also having this condition.

You write about the possibility that POIS is not a primary IgE allergy mediated process.  Dr Waldinger, in his 2004 POIS study, have already mentioned that the IgE were normal in test subjects, and now, in his most recent review article ( see the link  to this article at http://poiscenter.com/forums/index.php?topic=2346.msg19517#msg19517 ), he states that " 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.".  Identifying the antigen, and also blocking those pro-inflammatory cytokines production and actions looks like the way to go.

Like I have expressed lately on the forum, I do think that there is more than one type of POIS.  Your local POIS symptoms ( urinary retention, constipation, pelvic pain) can for sure be linked to some neurological problem in your spinal cord.  But for other POIS sufferer like myself, symptoms are very different ( mostly psychological symptoms, fatigue and hyptension), and having none of those local symptoms, it would be surprising that I have any spinal cord issue in the lower back region.   However, we do have the same trigger, and same pattern for a POIS acute phase.  t Tarlow cys  may well be a contributing factor in your type of POIS, and learning anything about any type of POIS is a step further in solving the POIS overall puzzle.

About NE prevention, in case you did not already read it, see this thread: http://poiscenter.com/forums/index.php?topic=2151.msg17197#msg17197

I wish you find soon a way to control and relieve your symptoms, so you can resume your medical studies.  Even if you only are beggining your medical curriculum, you are for sure already at ease with medical terms and abbreviations, and your understanding of scientific articles will be of great value for this forum, so I am very happy that you have joined :)
« Last Edit: August 19, 2016, 12:21:43 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Spartak

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Re: Personal POIS Summaries and Histories.
« Reply #87 on: August 20, 2016, 01:28:23 PM »
Thank you, Spartak, for this detailed account of your POIS history !  Thank you for having taken the time to write and share this on the forum.

I will stay connected to hear about what brings you some relief, and hope to be able to integrate some of your data in my POIS types chart.

I wish you to find a way to adapt to POIS, like abstaining for longer periods of time.  I know it is harder when younger, but for us, it sure has advantages.  What helps me to extend to a release once a week or once every two weeks is to find other significant source of pleasure in life, like playing sports or playing music.  I wish you to find something of this kind in your life, and enjoy more POIS-free days.
Hi,thank you Quantum!
,I.couldn't reply earlier,I am traveling a bit.

For me being among friends is the best way for abstaining.I have problem that if I am abstaining for more then few days I become calmless.I tried meditation but it wasn't helpful ,I simply can not relax.For example I play guitar only when in POIS because when I am ok I can not relax and enjoy,even people say that I am hyperactive. Recently I heard that it can be due depression.


Since I was taking these things long ago,I belive that is not against the rules to share it now.
Here is what was helpful(and not so helpfull) for me:

Niacin: Avoids full brain fog blast for for some time.For example if I have O before sleep,I will sleep better (with less nightamares),I will wake up more alerted ,but in the next few hours POIS will strike back.In my case it has positive effect mostly on brain fog.Other symptoms are not that differente.
So lest say:
Positive side:POIS related:
less brain fog (I don't like %,because they are subjective,but maybe 20% less in the next few hours,maybe 10%
up to 12 hours,then POIS strikes back.I took it in time when my POIS was longer(3 days),I also felt bit better in 3rd day.
Non POIS related:lowers my blood pressure and makes me more calm,also lowers my libido a bit,which seems to be  good thing for us :)

Negative side: related to POIS:none
non-POIS related : sometimes mild discomfort in liver and stomach.
I dount count flush,because I like it a lot :)

Dosage : 200+mg on emtpy stomach before O ,I notticee that I can have O after flush (up to hour I tried),durring flush and even a bit before flush effect is the same for me.

Fenugreek seeds and garlic:

Garlic - no effect at all

Fenugreek(took seeds):made.my POIS much worse,brought vommiting to my POIS,headache and brain fog were stronger
then ever,2nd day was rally bad as well.
Even when not in POIS I felt less creative after it. But THE MAIN SIDE EFFECT which I will in smaller strengh expirience with magnesium and tumeric later was constant strange simulation inside me,I am not sure is that prostate or something else.
But even minor sexual thing ,like beautiful girl on the street was enough for mini O without E (even without erection),but enough for mini POIS. It was impossible to cure that ,only after new O I felt less stimulation.

Only positive side(I guess due that over stimulation),I enjoid more in O and during masturbation/sex.

Xizal (anti-histamic) and

Diclofenac/Voltaren( nonsteroidal anti-inflammatory drug )

Both have similar negative effect,I had complety apathy for few days after,that felt really bad.

Tumeric/Cucurmin -1st thing that has positive effect on my mind.I felt more connected,I even flirted with girls online durrimg POIS,simply brain worked better.
Side effect :same over stimilation mentioned above,and stornger headache then usual.

Beta blocker (Propranol),primary for blood pressure,I am not takining it when in POIS because it many times gave me more brain fog and headache, before POIS (not directly,I should use it every 12 hours)no bigger effect except that I feel calmer

Gluten free diet (1,5 month) some effect on brain fog,se nothing scientific

I want to respect rulles ,so I will wait few more days before I share about few more things I tried and combo of those things,also because I want to check more are maybe some improvents permanent.
I think that is not wrong to say that with magnesium and zinc I expirienced hudge improvement,but also some really bad side effects.

*I mentioned above that my Pois was 3 days and also that I think that some improvments might be permanent,that maybe sounds confusing,so to explain.
Like I wrote in my prvious post,my POIS never felt stable.So over years I expirienced various severity of various symtoms.
Maybe I affected Pois somehow but I was not aware of,but anyway,for example around 1,5 year ago POIS went bad from itself,and I had for about year
3 days of symptoms.Few monts ago I notticed that I have again 2 days long POIS.Also once for a short period of time some symptoms last even a week after,it went better from itself.I had NE last night,and symtoms seems bit differente then usual,lot of improvent,very few seems bit worse.
So I just HOPE that some improvments might be permanets,but can't claim anything.Time will show,and I will share.

ps. Hot showers and hot weather are bad for my POIS,forgot to mention in previous POIS.

I hope that Quantum would not mind for paste his signature here:
Quote
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259
As always sorry for bad English.
With respect to all POISers
Spartak




« Last Edit: August 20, 2016, 02:20:22 PM by Spartak »
no sugar diet helps me a tiny bit, also makes my mind much calmer in general. Sugar is definitely something my body does not handle well. Also I noticed that other inflammations like a hangover are better since I quit sugar. I avoid sweet fruits as well.

demografx

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Re: Personal POIS Summaries and Histories.
« Reply #88 on: November 14, 2016, 07:46:58 PM »
Dear Fellow POISers,

I have been following the POIS Center forum for a while...


Welcome, baseballplayer20!

Hope you've visited our Welcome Page:
http://poiscenter.com/forums/index.php?topic=1.msg19998#new
10 years of significant 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.

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

Dirkstar

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Re: Personal POIS Summaries and Histories.
« Reply #89 on: November 17, 2016, 03:08:00 PM »
[REPOST] POIS may have destroyed my life. As an engineer, the impact to my cognitive function alone is tangible and devastating. I have also developed early onset Parkinson's (at 46) without any family history, except my half-brother who seems to be going through the same thing. My major symptoms are: Brain fog including short term and long term amnesia, headache, nausea, sleeplessness, and hypersensitivity especially to sound. These symptoms onset gradually within 30 minutes of orgasm and to a lesser degree with "edging". Years ago it was clear that these symptoms gradually increased and peaked at 3 days after O and then declined over the next 5-10 days. These days I just feel like hell for 10 days. The effects are cumulative with each O. I've been experiencing these symptoms as a profound acute event for since my mid 30s but I suspect my poor performance at college is related. A (unusually insightful) neurologist 16 years ago suspected seminal fluid prostaglandins sensitizing spinal neurons to pain/sensation and prescribed Advil (COX-2 inhibitors) 20 minutes prior to sex. THIS IS 80-90% EFFECTIVE and thus validates his theory. Unfortunately COX-2 inhibitors are not practical for regular use. Recent use of Tylenol before bed clearly helps me sleep better, but that's not a long term solution either. I have a high sex drive and probably masturbate too much so I've blamed myself and tried to control the disease behaviorally. This hasn't worked very well.

Since the Parkinson's is developing rapidly, I am now aggressively pursuing formal diagnosis and treatment. I'm discovering the ugly side of the business of medicine (some natural due to the complexity of medicine and the need to make a buck, some probably forced on them by government cost pressures): Specialists are generally interested in conditions they understand and can monetize. The Austin Diagnostic Clinic, representing a large number of endocrinologists in Austin, told me categorically yesterday that they would not see me for POIS, without explanation. I spent $550 out of pocket last week for a world-famous neurologist in Houston that writes textbooks about Parkinson's and he never heard of POIS, hypersensitivity as I described it, or a link between this hypersensitivity and Parkinson's. He and his medical staff were not interested in investigating POIS further or finding the right doctor/researcher.

Thank you to the creators and maintainers of this forum. It is troubling though that there doesn't seem to be much recent activity. I encourage any sufferer/researcher/clinician/author to feel free to contact me.

FloppyBanana

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Re: Personal POIS Summaries and Histories.
« Reply #90 on: November 19, 2016, 03:59:15 PM »
Hi Dirkstar,

Welcome to forum. How advil do you take to get good results? When you say not practical for long term use how much per month were you taking?

Progesterone, Benadryl & Mytelase in combination work for me. Can hold down an OK job as a finance analyst. Shoot maybe once every ten days.

If you are in the US you won't be able to get Mytelase. I think Neostigmine will be the closest then Mestinon.

You have to know how to use these in combination. It took me about a year work out best and most reliable at low dosage. See these posts:

http://poiscenter.com/forums/index.php?topic=2149.0

Can achive 95% effective but most likley around 75%. Moderation of O is key!

Hope this helps.
FB
30 years of POIS. Mytelase after O with Iceman breathing technique.

Dirkstar

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Re: Personal POIS Summaries and Histories.
« Reply #91 on: November 19, 2016, 06:21:23 PM »
Hey FB (lol),

Thanks.

The neurologist recommended 200mg x 2 = 400mg. I often take 800mg, esp. to take effect faster. This chews up my stomach (I had to go to the emergency room once for upper GI spasms).

Thanks for the advice. I'll take a look. Indeed moderation seems to be the most important thing.

Best regards,
Derrick

eccentricbipois

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Re: Personal POIS Summaries and Histories.
« Reply #92 on: December 11, 2016, 06:10:06 AM »
Greetings all! I've been lurking on and off for a few years now and finally registered on the forum. I'll give a rundown of my journey.

I've had POIS since as long as I can remember back into my early adolescence. For years I noticed I felt muscle weakness, strong irritability, ADD-like symptoms (problems focusing), difficulty with recalling words, short-term memory impairment, stuff that a lot of sufferers here are familiar with I'm sure. The symptoms would gradually fade, the only sure thing that helped was sleep; I'd feel 100% like garbage within the first 24 hours, then 50% the following day, then 25% the next day after that, symptoms were reduced by half each day since orgasm. I've tried abstaining from orgasms for 2-3 weeks at most, and I feel like I have a lot of energy and motivation when I do so, until I have the next O, back to square one. As crazy as this sounds, for a good portion of my life until about a few years ago I honestly thought these symptoms were normal but was too embarrassed to bring it up to anyone. I was able to function but I would just be not in a very good mood because I felt like a truck hit me within an hour after O.

At age 26 I had my first sexual partner, and finally someone to talk about these symptoms, upon describing she assured me that what I have is not normal, and that's when it struck me that I might have something. We did the Internet search for symptoms and in the results was the wikipedia page for POIS, and sure enough it sounded exactly what I've had. That's also when I discovered this forum and read several sufferer's stories and looked for ideas for treatment or at the very least relieving the symptoms to a manageable level. I tried the Niacin that seemed to work for some people here but it didn't really do anything for me. I also took Benadryl and Loratadine, which seemed to help with some of the flu-like stuff. When I was in college I actually tried taking Ibuprofen when I had the symptoms and it actually helped! I really should've seen a doctor earlier but wasn't sure if they'd believe me honestly, plus I'm too shy to be talking about orgasms to anyone.

A couple years ago I finally took initiative to see my doctor and explained the symptoms I suffered from. I first went to my primary care doctor who suggested seeing an allergy specialist, urologist, and then get tested for ADD/HD. I first met the allergy specialist who suggested taking Ibuprofen which seems to help with the aching/weak muscles, so I still do that today. Next I met the Men's Health specialist (urologist) at UW Medicine who had no idea what's going on and only saw one other case of this in his 20 years of practice. He then suggested seeing the neurologist who told me the same thing; "Sorry, we don't know what could be causing this or how to treat it." Great...

The psychiatrist at the ADD clinic determined that my ADD/HD was moderate based on the first test results and mild upon taking the exact same test visiting the office 5 days later. How could that be? Well POIS symptoms were in peak when I first took the test and then 5 days later when I visited the office in person, the symptoms subsided and I was back to "normal". Interesting...

So what does the psychiatrist believe is going on? It's likely related to dopamine, that fun fun neurotrasmitter that controls the reward and pleasure centers in the brain, among other things. What may be happening is that I generally have low-moderate levels and then incredible amounts of dopamine is released (in this case upon orgasm), then over time the withdrawal symptoms onset resulting in brain fog, irritability, cravings, seeking relief, classic example of a drug addict trying to get their fix. I immediately try to recall what other activities I engage in that release dopamine: drinking alcohol, socializing, playing video games, eating junk food... To me even these activities have always been highly pleasurable to a slightly overwhelming degree.

What the psychiatrist hypothesized made sense to me, but how could I treat this or reduce the severity of the 'dopamine withdrawal' symptoms? Well she suggested first trying something that would act as a dopamine agonist, not necessarily providing more dopamine release to the brain that would normally be prescribed to patients with Parkinson's but something to activate the receptors in the absence of dopamine, so when I actually get that dopamine rush it won't be so overwhelming. The psychiatrist prescribed Nuvigil (Armodafinil). On-label use is for people with sleep disorders but off-label use is for ADHD treatment and certain cognitive enhancements. Upon taking this daily I notice that my dopamine hits are much much less overwhelming, ie very manageable. Before it would be very exhausting just talking with friends.

POIS symptoms have been a detriment to my enjoyment of life, and has negatively impacted my work, studies, and relationships with family and friends. I've at least found a way to reduce the worst aspects of the symptoms by taking NSAIDs and dopamine agonists. Hopefully someone here finds this information useful.

This is a needlessly awful thing to have and through research hopefully we will soon discover what is causing POIS.

Also could someone message me the answer to "Which user is Admin"? I can never seem to answer that right.
« Last Edit: December 11, 2016, 06:12:59 AM by eccentricbipois »
Best idea so far (reduces symptoms by ~90%): Take Hydroxyzine Pamoate 25mg minimum 1 hour prior to O. Take 10mg Loratadine once daily, twice daily on days following orgasm.

Dirkstar

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Re: Personal POIS Summaries and Histories.
« Reply #93 on: December 11, 2016, 11:53:26 AM »
Hey eccentricbipois! Let me be the first to welcome you. I'm sorry for the suffering you've gone through. Nothing like having an illness that is devastating to your entire life, yet invisible, nobody has ever heard of, and is very embarrassing to talk about, eh? I hate talking to doctors about it, it is so humiliating.

I have speculated about the role of dopamine in my symptoms similarly to you. But more in the context of my addictive behavior and withdrawal symptoms that seemed to be different than the POIS symptoms (brain fog, headaches, nausea, sleeplessness, hypersensitivity). Different mainly because of the intense severity of the nausea and headache and a different feeling like crap and the fact that intense withdrawal symptoms has only happened rarely after (if I recall correctly) I went through long bouts of the most intense sexual activity. Perhaps "withdrawal" here is equivalent to a highly depressed dopamine system as your doctor suggests. However, I note again that I now have Parkinson's Disease, which is a destruction of dopamine producing cells in the motor center of the brain. So I have been taking pramipexole, which stimulates dopamine sensitivity, and carbidopa/levidopa, which is a synthetic dopamine. Neither of these seem to affect my POIS.

So I speculate that, for me, the dopamine aspect is separate from POIS proper, if you will, where the dopamine role is (1) an addiction and withdrawal process (very powerful and obvious to me; sex becomes all that matters), (2) part of the "normal" post-coital depression process that most males go through immediately after orgasm and possibly for a few days after that (I recall getting into trouble with girls more than once by not calling for a few days after sex (following intense attention of course), because I really had a very strong sense of well being and no *need* for companionship and sex), and (3) maybe a *reaction* to the hypersensitivity of POIS, i.e. like endorphins to pain. If (3) is true, then post-sex neural *hypersensitivity* may be normal to guys but just not to the degree where it causes illness and neural dysfunction.

So the dopamine aspect I (struggle to) address through moderation (yuck).

Then, as I stated above, I try to prevent the hypersensitivity itself, which, according to my neurologist, seems to be caused by high amounts of prostaglandins created in the prostate and released internally (mostly with ejaculation). So my neurologist prescribed Advil (NSAID COX inhibitor) 20 minutes *before* sex/ejaculation which has a *clear* benefit to me. NSAIDs or Aspirin or Tylenol *after* sex/ejaculation help a little, but just a little. I've discovered recently that taking Tylenol particularly before bed helps me sleep much better during POIS and may even help shorten the typical duration (1-2 weeks for me, though I rarely have been able to abstain from sex long enough to see if it goes away entirely). None of these are good for taking long term though, as I've had two emergency room visits that seem to be related (GI spasms and a kidney stone a few weeks ago).

Finally, we cannot dismiss the allergy to semen theory. I have other symptoms which may be explained by this.

I'm sure I speak for all of us in that I'm very grateful for your sharing and to know that I'm not alone. Your experiences with your doctors and treatments are very interesting and helpful. I look forward to your next post.

Dirkstar

Dirkstar

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Re: Personal POIS Summaries and Histories.
« Reply #94 on: December 14, 2016, 01:26:09 PM »
I'm not being successful finding an endocrinologist in the Austin area that will see me for "POIS" or "prostaglandin imbalance" (as my primary care physician is calling it in his referrals). It has been said here that there are clinicians that have heard of POIS in the U.S. and will see patients for it. Mind providing a list?

My primary care physician also thinks I should see a psychiatrist. Great. I have no doubt one would be happy to take my money.

Dirkstar

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Re: Personal POIS Summaries and Histories.
« Reply #95 on: December 14, 2016, 01:45:18 PM »
Can I get a copy of the 2010 Ashby and Goldmeier study (and not pay $30)?

Ashby J and Goldmeier D, CASE REPORT: Postorgasm Illness Syndrome ? A Spectrum of Illnesses, The Journal of Sexual Medicine May 2010; 7(5):1976-1981

They studied just two people, one of which had cultural issues, so not very impressive, but I'd like something to show my physicians. Sorry if I'm posting to the wrong place.


Quantum

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Re: Personal POIS Summaries and Histories.
« Reply #96 on: December 14, 2016, 07:22:24 PM »
Hi Dirkstar,

In order to keep this thread for POIS summaries, I have posted an answer here : http://poiscenter.com/forums/index.php?topic=2392.new#new
« Last Edit: December 14, 2016, 07:25:48 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Akaliko

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Re: Personal POIS Summaries and Histories.
« Reply #97 on: January 26, 2017, 09:16:53 AM »
Hi all, I wanted to share a bit about the history that's landed me here as of last week.

In my early twenties, I began searching for a spiritual path, born out of many years of difficulty, unrelated to POIS.  I was fortunate to eventually encounter meditation, which revealed itself to be a compatible and effective discipline for me.  I threw myself into intensive practice, spending lots of time in meditation centers and monasteries, and like many other devoted meditators, worked to let go of all sexual activity.    It's difficult for me to remember any instance of voluntary sexual activity from 2009-2013.  And whatever involuntary, nocturnal emissions that may have happened during that time, my memory is that there were not followed by any symptoms.

In 2013, I began re-experimenting with self-sex, and was horrified to experience, for the first time, POIS-like symptoms; and for various reasons, it became impossible for me to return to abstinence.  So, I have trudged along with symptoms for the past 3.5 years - with confusion, upset, and mostly without consultation - unaware of this diagnosis and community.  It's a great relief to have arrived here after these 3.5 years of being alone in the misery. 

My self-determined hypothesis during that time, 2013-2017, was that I must have thrown something out-of-whack during my period of restraint from 2009-2013.  Having skimmed the forums this week, seems like that's not at all everyone?s experience.  So I wonder: has anyone else noticed (i.e. is there any record of ...) first onset of POIS symptoms following long periods of abstinence?

« Last Edit: January 26, 2017, 09:28:36 AM by leerichter »

Dirkstar

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Re: Personal POIS Summaries and Histories.
« Reply #98 on: January 26, 2017, 12:12:24 PM »
Let me be the first to welcome you, leerichter, and also to say I'm very sorry you are suffering too. In addition to the devastating symptoms, this condition is very hard to talk about even with medical professionals.

I note that many here, including myself, suspect serious emotional and personality difficulties to be associated with POIS.

For me, the effects of POIS are cumulative. So the thing that limits the severity of the symptoms the most is moderation in sexual activity. This means fun things like porn and masturbation. I get symptoms these days with any arousal. At least a week between such fun events seems to clear 90% of the "brain fog" and other symptoms associated with that event. Moderation for me however does not seem to remove the effects associated with a single event. For a single event I take 800mg ibuprofen (buffered so it doesn't eat a hole in my stomach), at least 30 minutes before any fun, preferably an hour, and on a fairly empty stomach. Taking ibuprofen daily, and on an empty stomach, is potentially dangerous btw, especially if unbuffered. I went to the emergency room once because of it. Read up on ibuprofen (and COX-2 inhibitors) before taking it regularly.

Best wishes

taurusthree

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Re: Personal POIS Summaries and Histories.
« Reply #99 on: August 20, 2017, 12:42:33 PM »
Hey guys! Yet another POIS sufferer here.

Dirkstar and eccentricbipois shared very good ideas on two seemingly distinct aspects of POIS: the first one related to dopamine reward system and the second one related to hypersensitivity. I relate to both: I'm HSP (a highly sensitive person, an extreme case I guess) and also suffer from ADD.

In my observation, emotions and inflammation are tightly coupled. After any "more than average" emotional exposure I feel not only overwhelmed, but also the overall inflammation of my body increases. Even the color of my face changes. And I become more prone to my allergies; an instant allergic rhinitis and a bitter taste in mouth. And this is not only after "bad" emotions, the "good" ones manifest in the same way: any obsession easily gives the same soar throat and inflamed sinuses. Once, when I tried to force me to work during a POIS period with allergic rhinitis I got a SSHL (Sudden Sensorineural Hearing Loss). An inflammation of an ear nerve. Thanks to steroidal anti-inflammatories, I've recovered hearing of that ear after 2 weeks.

Also I have: dry eyes/ nose (especially during the "lows" of ADHD), POTS (postural orthostatic tachycardia syndrome), not the very best working/ long-term memory, fybromalgia (I've discovered that recently: I was just used to the constant pain, uncomfortable feelings from early childhood), unrefreshing sleep (this one also from early childhood; I always wanted to rest after the sleep), allergies (+ extremely elevated specific IgE levels to almost everything I've tested).

Before getting to the POIS part, I also want to share an observation about the extreme cases of nervous system sensitivity. After watching a movie, the world seems like a scene from that movie. Initially I thought everybody is like that, but recently discovered that only one of my friends experiences this. Same goes for gaming, but it escalates the symptoms much faster: play a computer game for 5 minutes, close your eyes and you're still driving that car. First time my parents bought me a computer, after few hours of exposure to the PC screen I went to bed and couldn't sleep. I was closing my eyes and seeing Windows XP icons, opening and closing windows, moving cursors...

About POIS: have the full range of symptoms. Starting from severe brain fog, ending with inflammation (sometimes in weird places). It usually decreases on day 2-3. And it makes my not-the-easiest life much worse. And it made my adolescence a total hell.

* * *

I always wanted to try ADD medication to see how it affects my concentration and whether can I tolerate it as an HSP. Unfortunately I am from a post-Soviet republic and stimulants are forbidden here. So my doctor decided to go another route: antidepressants. However you can't find SNRI-s here either (which may also help with ADD)... So, I'm currently on a SSRI - Zoloft. To be honest I wasn't expecting any drastic improvement to my condition. Currently I'm on day 4, and was anticipating to feel changes (if any) only after few weeks.

... However some sort of magic happened even on the second day of 25mg Zoloft (Sertraline) (which is not the therapeutic doze even). ADHD is still there. However instead of ADD-PI with loss of energy, it is now more like the hyperactive type. So yeah, at least I have a lot more energy, don't want to sleep all day long etc. Next, the sensitivity is drastically reduced. Even in the current state (with reduced sensitivity) I'll consider myself an HSP, but not the extreme type I mentioned earlier. Smallest emotion remains a relatively small emotion and doesn't immediately escalate to the full power. Conversation with people gives energy; any activity with "more than average" emotional component doesn't immediately drain or overwhelm. Also, (and that's the weirdest part, which proves my theory about the entanglement of emotions and inflammation): the inflammation is dramatically reduced. Much less allergies.

POIS was still there but to way less extent, and the next day I felt more or less normal (very little inflammation, and some restlessness, thanks to the ADHD).

So yeah, some of us may benefit from Sertraline.

So, my current theory (about my subtype) is: POIS seems to somehow activate a mechanism which makes more prone to the inflammation. The mechanism is already present in us (e.g. when experiencing very intense emotions people may experience inflammation. Some of us experience slight emotions as very heightened, so maybe get that inflammation much more easier). And maybe it is not the inflammation because of allergy to the semen itself (after all you always have that sperm in testicles), but instead it just (temporarily) makes your existing allergies worse. + in addition, the dopaminergic symptoms. And those seem not to be related to the previous ones. I suspect, people with ADHD are way more vulnerable to the latter.

I'll make updates on whether and how much Zoloft really helps. After all it could be just a placebo (though I highly doubt that). Also I want to express my gratitude for the existence of the Internet. What would we do without it? These kind of forums are really-really helpful and giving hope (in contrary to the sh*tty instagrams...) .
« Last Edit: January 12, 2019, 01:06:45 PM by taurusthree »