[demografx]

Daveman, should we add our Collaborator's List to the Newcomer Welcome Post?
http://72.52.181.21/collaborator_list.php

[demografx]

The new POIS Forum link is now redirecting to:

www.POISCenter.com/forums/index.php

[Wibin]

Hello, my name is Jamie, and I’m a male POIS sufferer. Whoa, that sounded tacky but I just had to say it out loud. []

Much of what and how I felt after an O I attributed to POIS before even knowing about its existence. The thread here confirmed my understanding of my own reaction to stimuli. I, however, am not here to discuss about my problems, which to me are important of course  [], but rather to add to the insights, suggestions and theories regarding POIS.

First of all, my theories as to why I have POIS, or stronger withdrawal from euphoria than people on average (after all, question is of extent of the downfall) and how some supplements/medications affect me:

•   I’m a celiac, as in gluten intolerant. I had, however, been eating gluten for the first good 22 years of my life (I’m 27 now). My reactions to gluten were very slight in nature, and the tests came back negative. After abstaining from gluten, I, however, have a strong reaction to it (prickly feeling or it actually hurts). Thus many can be gluten intolerant without even knowing it. This is important in regards to POIS because this can severely affect the absorption of the notoriously badly absorbing amino-acids. Even after going gluten-free for years. Two of the amino-acids, phenylalanine and tyrosine are the key here. So POIS sufferers may have problems creating replacements with bad absorption (for one reason or another).
•   I have been diagnosed with ADD. This was shortly after realizing connection behind POIS and orgasms. I told the doc the first time I went to his office about this. He thought nothing of it; said he had not heard of it, basically shrugging it off. But I didn’t pursue it further. This is because:
•   a. the ability to concentrate far from perfect even when abstaining for months. Thus POIS is likely not to be the underlying cause, but definitely one of the main symptoms and triggers.
b. I got what I wanted: prescription meds. Bupropion. 
•   Prolactin could be a variable here. By taking meds and supplements (mentioned below) I can correct my ADD or brain fog, but still feel uninterested. I would assume prolactine? Period not wanting to have sex coincides with POIS symptoms lasting up to a week.
•   Underlying cause being the body adjusting to higher (temporary) levels of dopamine resulting in chronic deficiency. This can be due to over masturbating or smoking when developing (teenager years).

Bupropion: this has had a tremendous effect on my ADD (attention deficit disorder). I can concentrate better and I wake up fresh instead of groggy. Also, I stay awake better during daytime and as a result I fall asleep faster. This also increasing the effects of orgasms and thus makes POIS far worse! The effect is very strong in lengthening the o, or perhaps I should say that I get multiple Os (like 3-5) in a short amount of time (15seconds -1 minute). I can tingle up to four hours afterwards. This maybe just me. However, Bupropion also gets me on the rebound faster. Typically I suffer approximately 4 days while without the med it can be up to week and a half before feeling full of energy again. Thus it is likely to have something to do with Norepinephrine or Dopamine. This is definitely the main cause of my soddy feeling, be it POIS or ADD.

My POIS symptoms are as follows:
•   Lethargy and disinterest in anything.
•   Sleepiness, grogginess, brain fog.
•   Socially disconnect, verbal impairment
•   flu-like symptoms (feverish + dry throat)
•   I feel physically sick sometimes after one hour and lasts approximately 3 hours.
•   Trying to sleep all day, but not succeeding. (mentally tired)

These are in addition to my ADD which mainly affects reading and concentrating (thus not affecting stuff you really enjoy doing or conversing with people). However, I believe ADD and POIS is the same case in my case, as with some of the other POIS sufferers no doubt. In POIS the orgasm is the trigger, causing havoc on an unbalanced system with slower than usual recovery.

What has helped with me:
Tyrosine/phenylalanine – this is a temporary fix for the sleepiness or lethargy and brain fog. However, I’m not that interested in doing anything really and become passive (or depressed to a slight degree). You have to take a lot (1000mg) and often (2-3 times a day). Acetyl-tyrosine is much more effective for me, but I may get a headache from it. The resulting dopamine also reduces the amount of prolactin that can be a factor in POIS.

DHEA and or pregnanone – this helped, but only slightly. I think I become cranky from them so I generally avoid. DHEA, however, appears to have a positive effect on social features when out of POIS (more assertive from testosterone?).

St. John’s wort – this works for what Tyrosine doesn’t work for. Generally better outlook on life but does’t really improve concentration. I take 300 mg on POIS days, and yes, it does work without having to take something like 900 mg every day for at least 3 weeks before positive effects as is the norm as anti-depressants. Taking 900 mg too late in the day will affect falling asleep, leaving me with a feeling of being “content” but buzzy (brain fog). These effects are present even when taken sporadically, and on the whole positive when treating POIS symptoms even if I can become “slower”. This is likely to be serotonin effect, so it may play a part although not the main performer in this stage.

Sam-E – it works in a similar manner to bupropion or tyrosine. I have to look into it further, but I suggest everyone trying it and reporting on it.

Amino-acids – amino-acid supplements. ALL of them. I got a large pack of Amino-acids (Now foods amino-acid complete), both essential and non-essential. Taking on the upper limits or over it does have a positive effect!  [:0]So I hope you’ll look into the amino-acid deficiency theory. Amino-acids are, after all, the building blocks for most of the chemicals created by the human body. Not only tyrosine and phenylalanine, but others too.

These are largely aligned with what others have discovered.

Some things I take for POIS without being quite sure if they work:
Ginko gilboa: Should be good.
Rhodiola rosea: I’d like feedback on this. It increases dopamine. Only take it in the mornings. And take on the upper limits! I take 1x500mg (3%) and that is at its lowest dose with some effect.
Now trying Zinc, fenugreek and PhosphatidylSerine too thanks to this forum. Especially Phosphatidyl Serine seems promising!

Some things that I feel are utter bollocks (but these are just my educated opinions with medical knowledge running within the family and my own experience of my body):
Allergy to sperm. (ok, maybe for some, but really rare)
Anything to do with semen. (women have POIS too)
Testosterone. It may help through secondary methods, but I doubt it’s a lack of testosterone. The actual problems lie elsewhere as I cannot trace the connections within the body. DHEA may indeed be effective, but that’s the nature of it as a “mother of all hormones”. I could be wrong too, but hey! After all it's a free country even in being wrong! I just find that there is too much emphasis on T in treating POIS. []
Anything to do mental state. I read a lot that having sex with a partner is better for POIS than masturbating. This is probably more to do with moving more, breathing heavily/exercising when having actual sex. Also I find that the orgasm is of different type as you are concentrating on something different. I would even go as far as to say that the o is stronger when masturbating as you get a stronger ”flush” when you concentrate more on feeling as it happens further reinforcing the good feeling and giving a few more Os for 5-10 seconds. General gratification is of course far lower with masturbation as it is mostly just the actual O part.

I hope this is of some help to someone.
Greets & good luck!

[Kingkong]

Bonjour Alui, je suis un francophone du Canada, Quebec. Nous pouvons échanger sur ce forum ou autrement. à vous de me faire savoir la facon de communiquer.

[demografx]

From our friend, Stefanie, at NORD


Hello Demo, et al,

I'm happy to advise you that Dr. Ves Dimov, from the University of Chicago, sent an email earlier today. 

He remains interested in participating in the evaluation of men with POIS, and will be collaborating with his colleague from Creighton University in Nebraska, Dr Bewtra.

As some of you may already know, Dr. Bewtra has started an initial evaluation process.  He has done some preliminary evaluating and testing on one or two men from your group.

Dr. Nguyen, who I believe is a Fellow in Creighton's Department of Allergy and Immunology, assisted in those preliminary evaluations. He and Dr. Bewtra are planning to write a report and hopefully  present their initial findings at the upcoming ACAAI annual scientific meeting (American College of Allergy, Asthma, and Immunology).  I believe this meeting takes place in early November.

They are obviously viewing POIS seriously, and devoting behind-the-scenes time and effort to it.

(FYI, a "Fellow" is a MD in an advanced specialty training program.)

Dr. Dimov and Dr. Bewtra are highly-regarded allergists/immunologist with outstanding academic qualifications.  Their interest, and the potential submission and presentation of a report by Dr. Bewtra and his Fellow, Dr Nguyen at the ACAAI annual scientific meeting, are definitely steps in the right direction for all of you!

The wheels of research can seem painfully slow at times, but don't let that discourage you -- at all!!  Real research is worth waiting for. 

POIS is just getting its wings. :-)


Sincerely,
 
Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org
 
Join our online community
http://nord.clinicahealth.com/
 
NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions

 
--------------------------------------------------------------------------------------------

[demografx]

alui, and Wibin, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS resources which may be helpful to you:

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
THIS POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the file for that TV documentary, "Desperate Measures", which can be downloaded and played. The segment starts at about 12:20..
http://www.fileserve.com/file/cUtJa9R/TITLE01.mp4

Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat


* Most recent POIS Research Studies, 2011 *

Send Dr. Waldinger an email, and he will send you the copies of both articles. At a later date, he will send you a POIS questionnaire to fill in. He gets busy, so If you do not receive a timely reply, please contact me or "daveman" and we will expedite.
His email:
prof.dr.waldinger.pois@gmail.com

Prof. dr. Marcel D. Waldinger's website:
http://www.post-orgasmic-illness-syndrome.com/en/index.html


First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 3 studies: for a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN OUR HEADS'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus over 1,000,000 page visits. Not bad for a rare malady!

[demografx]

alui, and Wibin, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[demografx]

XXX I have to look into it further, but I suggest everyone trying it and reporting on it.

Please refrain from making general medical recommendations over the internet without having seen a patient (even if you were a medical practitioner). Your own experience can be shared. Thanks for cooperating.

[Animus]

Whoops, Animus, I almost forgot!! Yes, please send it there!

 [] []

[Animus]

Animus, it would be great if the 2 POIS physician-authors also get the DVD, Dr Goldmeier and Dr Dexter, on our Collaborator's List.

If that's  asking a lot, let me know how I can assist. Or, since they're both in London we could simply alert them to the summer TLC airing?

Thank you very much for taking care of Dr Waldinger!

Yes, I'd be happy to do that.

[demografx]

Many thanks, Animus!

[Vandemolen3]

Great news about Dr. Nguyen, Dr. Dimov and Dr. Bewtra!

[Vandemolen3]

Yesterday I had an O. Today is day 1. And I feel better than normal. I think I have 25 % less POIS. But I don't know in how far this is the effect of injections. Because I was eroused a very long time and then I had the O. In this case there is always less seed in the sperm. That could be a reason. And the other thing is that I just came back from a holiday from Asia (lot's of vitamin D). I will try it about a week with a quick O. I will let you know. But I can't wait to get my new injection about 3 weeks.

An O. again. And again I think 25% less symptoms. Mainly less rash in my mouth and nose.

[carlitto]

Yesterday I had an O. Today is day 1. And I feel better than normal. I think I have 25 % less POIS. But I don't know in how far this is the effect of injections. Because I was eroused a very long time and then I had the O. In this case there is always less seed in the sperm. That could be a reason. And the other thing is that I just came back from a holiday from Asia (lot's of vitamin D). I will try it about a week with a quick O. I will let you know. But I can't wait to get my new injection about 3 weeks.

An O. again. And again I think 25% less symptoms. Mainly less rash in my mouth and nose.

Thanks to you Van and to Willem, we will finally be able to judge if POIS is an allergy or not... hopefully in a year from now.

[Vandemolen3]

Thanks to you Van and to Willem, we will finally be able to judge if POIS is an allergy or not... hopefully in a year from now.

Thanks Carlito. I hope to tell you about a few months at the end of 2011.

[daveman]

Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).

Demo,

I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.

Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.

Amazing! Your considerations above go a long way to confirm my longstanding hunch that my POIS is somehow related to my semen regeneration speed: in my depth-of-POIS-agony days - for 30+ years - my regen speed was like molasses. With testosterone treatment, my regen speed is RAPID, and my POIS has been whittled down drastically!

Just my hunch.

Well, you don't regenerate at all. So that could be the 80% of it, just as it was with Animus (more or less).

And perhaps the 20% could be removed by eliminating semen.

It's still important to discover the mechanism of the suffering.

It still could be auto-immune, or some kind of systemic, hormonal drain. And, although in Animus's case and your case, your POIS is reduced/cured, sterilization is not an optimal cure for most. Reversible sterilization could be. But it seems that only complete semen elimination provides 100% relief. Is that reversibly possible?

But better would be stopping the negative effect that sperm or semen cause.

Sorry that I'm being so finicky here. But it's all the difference in the world, especially for an otherwise healthy, intelligent 20 yr old with the desire for a future with dignity.

I'm saying there's a debate here. And perhaps we don't have enough information to say one way or the other. I understand what your saying Animus. And it could be. But it could also be auto-immune with the same situation.

What do we need to do to resolve the debate, rather than just talk about what we think? Don't take this as a smart-assed question... I'd really like to get past this somehow.

[demografx]

Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).

Demo,

I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.

Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.

Amazing! Your considerations above go a long way to confirm my longstanding hunch that my POIS is somehow related to my semen regeneration speed: in my depth-of-POIS-agony days - for 30+ years - my regen speed was like molasses. With testosterone treatment, my regen speed is RAPID, and my POIS has been whittled down drastically!

Just my hunch.

Well, you don't regenerate at all...

Sorry to disagree, Dave, but I most certainly DO regenerate...............semen!

And the process certainly feels absolutely identical to my "sperm generation days".

The key is that when I feel "FULL" (analogous to a car's tank of gas), I am POIS-FREE. And this holds true equally with my sperm-semen as well as my zero-sperm-semen eras.

I can say this unequivocally because I have been observing it for 35 years.

All observed during high fertility years (I have 2 strapping grown men for sons), and all during testosterone treatment, and all during whatever period I lost sperm, evidenced by my recent Semen Analysis Laboratory Report.

I believe that the biological process of semen-only regeneration is identical to semen-with-sperm regeneration.

[pyropeach]

Animus, do you see any connection between your surgery = 100% POIS-free and my TRT = 80% POIS-free?

(Keep in mind my 'mysterious' Zero-sperm-count - a mystery as to when it occurred).

Demo,

I've thought about this a little more...

One possible explanation is that we cannot efficiently or healthily produce the semen which we've lost due to ejaculation.

Once the semen is ejaculated, it may cause the body to go into semen replacement mode (I do not know if this is true). However, if it were true, and semen replacement is the issue, maybe something which helps semen replacement also helps alleviate POIS. Perhaps the Testosterone therapy for you, helps with your semen replacement.

And for me, the surgery removed my ability to produce and ejaculate semen, so my body no longer replaces it.

Not producing sperm anymore could be lessening your POIS too because you're not replacing that either.

Amazing! Your considerations above go a long way to confirm my longstanding hunch that my POIS is somehow related to my semen regeneration speed: in my depth-of-POIS-agony days - for 30+ years - my regen speed was like molasses. With testosterone treatment, my regen speed is RAPID, and my POIS has been whittled down drastically!

Just my hunch.

Well, you don't regenerate at all...

Sorry to disagree, Dave, but I most certainly DO regenerate...............semen!

And the process certainly feels absolutely identical to my "sperm generation days".

The key is that when I feel "FULL" (analogous to a car's tank of gas), I am POIS-FREE. And this holds true equally with my sperm-semen as well as my zero-sperm-semen eras.

I can say this unequivocally because I have been observing it for 35 years.

All observed during high fertility years (I have 2 strapping grown men for sons), and all during testosterone treatment, and all during whatever period I lost sperm, evidenced by my recent Semen Analysis Laboratory Report.

I believe that the biological process of semen-only regeneration is identical to semen-with-sperm regeneration.

You're both right, I think, we don't regenerate semen, but we in another sense we do.  We definitely can't say we constantly generate the actual fluid semen because the actual fluid is secreted by four glands (seminal vesicles, prostate glands, cowper's glands, testicles) only during ejaculation.  As semen exits the body, it begins from the seminal vesicles and gets components added to it from the remaining glands along its path.  In other words, if we were continuously generating seminal fluid, we'd be continuously ejaculating, which would be....interesting.  Anyways...I can surely attest to experiencing no symptoms as soon as I feel like my sperm supply has fully regenerated, I suppose this could go hand in hand with "semen regeneration".  But saying "semen regeneration" is misleading, I think.  40% to 60% of semen is secreted by the seminal vesicles, so I think its better to say there may be some sort of fatigue associated with the seminal vesicles, kinda like what we used to talk about with adrenal fatigue.  Seminal vesicles are just another set of glands that need time to regenerate after excretion, so its possible these glands just don't regenerate as quickly as people without POIS, or its just extremely taxing for our bodies to regenerate these glands.

[Animus]

I'm saying there's a debate here. And perhaps we don't have enough information to say one way or the other. I understand what your saying Animus. And it could be. But it could also be auto-immune with the same situation.

daveman,
Thank you for making that point. I think it's important. I wonder how one would explain demo's improvement along the allergy theory. How would you explain that?
Also I would like to understand how testosterone could improve an allergic reaction.

Similarly, one can see my solution in terms of the allergy theory- in that semen elimination took away the allergen...?

[demografx]

Pyropeach, wow, just as soon as I thought I was getting a small handle on my own POIS mechanisms, you come along and introduce.....Science!

Sigh....back to the drawing board!  []

Sincerely, many thanks for the enlightenment.