Post Orgasmic Illness Syndrome (POIS)

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #550 on: 28/05/2008 07:33:13 »
I am about to go insane.  If I talk about this to anyone else, they won't understand and I don't want to see their confused expression and hear their useless advice.  At least you guys understand.  I simply have to talk about this somewhere...I am in hell.  I just had a few orgasms in the past few days, even writing this is taking me forever.  I simply can't function. I have homework and exams coming at me from left and right.  The brain fog, lack of concentration, speech difficulty, depression, headache,  and utter exhaustion has completely ruined my hopes of everything I seek for in the future.  It hurts so damn much - knowing I can never be in an intimate relationship, where I have to turn down opportunities with girls despite my desperation, let alone go to graduate school and achieve the goals important to me, and knowing my future is pretty much screwed. I have to drag myself through each agonizing day trying to avoid people and struggle to act normal until the symptoms stop while in constant fear of getting a wet dream.  I cannot live like this.  It feels like my scalp is sore from overexertion.  Does anyone else get this symptom? Where it feels like the muscles of your scalp are constantly tightened around your skull and it feels sore almost like a burning feeling?

We need more data.  These tests we get from the doctors who look at us funny are a joke; we need a group of some sort to research this in a laboratory setting...I've had it with doctors.  And all these supplements I've been taking don't really seem to do much.

Well, I think I've vented enough. 

I was just wondering if anybody would be willing to meet other people with this condition in second life?
I would like to create such a place but I have no idea wether people would come.

I'd be willing; in fact I'm about to make an account on second life.

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Offline jeroboam

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #551 on: 28/05/2008 17:54:51 »
First time I measured my temperature when suffering from POIS: 5 hours after my temperature was 37,5C .. So i've got a fever. Is this so with everyone?

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Offline jeroboam

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #552 on: 28/05/2008 19:06:13 »
Is there any chance this could be related to sexual transferable diseases?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #553 on: 28/05/2008 20:37:32 »
Have any other persons also noticed the corelation between the quality of the orgasm (the feel good feeling (=amount of dopamine released when orgasming?)) and the bad after-effects? That they are worse when you have a 'better' orgasm?

I have wondered about this too. But I only noticed the reverse, i.e., with VERY low intensity orgasm, the POIS symptoms can still be excruciatingly negative, i.e., very bad. I have also noticed that MULTIPLE orgasms can lead to horrific POIS compared to single-orgasm.

Now that you brought it up, maybe we can all take a closer look. Thanks.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #554 on: 28/05/2008 20:39:51 »
Is there any chance this could be related to sexual transferable diseases?

In my case, I don't think so. My POIS goes back steadily to at least 25 years ago, and probably longer.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #555 on: 28/05/2008 20:51:36 »
demografx: I googled Levitra and read up a bit about it. It's known as a PDE5 inhibitor--does anybody know what that means? I know Levitra increases blood
flow, but HOW exactly it works in the body might be a clue as to why it helps the symptoms of POIS. Because there are some potentially very risky side effects
from taking Levitra, especially prolonged use--like "serious cardiac events" (as in heart attacks), penile tissue damage, and potential loss of vision, due to a
decrease of blood flow to the optic nerve--that isn't something I would want to experiment with. In general I am more inclined to using vitamin supplements,
herbal remedies and hormonal cremes. (I've had far too many side effects and allergic reactions to pharmaceuticals.)  But I'd like to know more details about
how the chemistry of Levitra affects steroid hormone production, or if there is a link along those lines.

Girlwind, thanks for the WARNINGS about Levitra, especially as it relates to the heart. I have posted that caveat often, and it needs to be repeated.

I know that we often get desperate enough to try anything!! So the word of caution.................

Our listmember B_Jim has good ideas about Levitra having a dopaminergic and stimulant component. Also, if we can get an endocrinologist as a POIS Advisor - which we're in the process/trying to do - maybe we'll all learn more about a "safer" cure than Levitra.


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #556 on: 28/05/2008 21:59:22 »
I am about to go insane.  If I talk about this to anyone else, they won't understand and I don't want to see their confused expression and hear their useless advice.  At least you guys understand.  I simply have to talk about this somewhere...I am in hell.  I just had a few orgasms in the past few days, even writing this is taking me forever.  I simply can't function. I have homework and exams coming at me from left and right.  The brain fog, lack of concentration, speech difficulty, depression, headache,  and utter exhaustion has completely ruined my hopes of everything I seek for in the future.  It hurts so damn much - knowing I can never be in an intimate relationship, where I have to turn down opportunities with girls despite my desperation, let alone go to graduate school and achieve the goals important to me, and knowing my future is pretty much screwed. I have to drag myself through each agonizing day trying to avoid people and struggle to act normal until the symptoms stop while in constant fear of getting a wet dream.  I cannot live like this.  It feels like my scalp is sore from overexertion.  Does anyone else get this symptom? Where it feels like the muscles of your scalp are constantly tightened around your skull and it feels sore almost like a burning feeling?

We need more data.  These tests we get from the doctors who look at us funny are a joke; we need a group of some sort to research this in a laboratory setting...I've had it with doctors.  And all these supplements I've been taking don't really seem to do much.

Well, I think I've vented enough. 

I was just wondering if anybody would be willing to meet other people with this condition in second life?
I would like to create such a place but I have no idea wether people would come.

I'd be willing; in fact I'm about to make an account on second life.


PYROPEACH, hold on to your hat! We're looking for a research endocrinologist. I BELIEVE THAT A CURE EXISTS IN THE POSTS OF THIS FORUM! After 25+ years of my own misery, I have personally experienced the "miracle" of a 75% cure! I'm so angry and greedy right now that I want the other 25% as badly as I wanted a cure before.

Sore scalp? I get burning fingertips which drive me insane. I suspect they're different manifestations of the same problem.

We're all here with you, pyro.

I will consider second life, but it sounds complicated.
(I complicate things easily [;D] )
« Last Edit: 29/05/2008 04:01:48 by demografx »

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #557 on: 29/05/2008 02:44:26 »
Is there any chance this could be related to sexual transferable diseases?

It can't be because I'm a virgin and have POIS full blast.


As for secondlife, I'm named Pyropeach Paule if you want to locate me.

Demografx, thanks for the reassurance, I need every bit of slack I can get these days...

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #558 on: 29/05/2008 04:15:40 »
First time I measured my temperature when suffering from POIS: 5 hours after my temperature was 37,5C .. So i've got a fever. Is this so with everyone?

I don't get a fever, but this is consistent, in my opinion, with Dr Marcel Waldinger (pioneer POIS researcher)and his description of "flu-like symptoms".

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #559 on: 29/05/2008 04:37:20 »
We're looking for a research endocrinologist.

How is this being done? And is there anyway I can help?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #560 on: 29/05/2008 04:52:42 »
We're looking for a research endocrinologist.

How is this being done? And is there anyway I can help?

Absolutely! We need to find a research endocrinologist, someone who can go through all these POIS Forum posts and make some recommendations for us to test low-risk cures. I'm asking Chris if he knows someone at Cambridge U.

CAN YOU HELP?

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #561 on: 29/05/2008 08:31:36 »
CAN YOU HELP?

I may be able to find someone at OHSU - one of the top ten med. schools/research facilities in the US.  It might be tricky because I have to go around all the red tape with the help of a friend who's dad is a stomach doctor who may have some connections up at OHSU. 

I'm also planning on seeing a research doctor in neurology in California if I can somehow get an appointment and get insurance to pay the bill (I hear it could reach up to a 1000 bucks).  If I do see him, I'll definitely show him this forum and try to convince him to join our discussions.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #562 on: 29/05/2008 15:55:31 »
Demografx--I spoke with a friend who is a nutritional researcher and he said arginine (an amino acid) has the same basic effect as
Levitra, which is to raise the nitric acid levels in the blood, with no risk of heart attack or potential blindness. Just to let you know.

And.... here's some evidence of an endocrine connection to this POIS problem. I had my blood levels of various hormones tested and
got the results that my DHEA and my testosterone levels were low, my DHEA being ONLY HALF of what is considered "normal" for my
age. But weirdly enough, I am having a hard time tolerating DHEA. It's making me feel jittery and agitated in even small doses, as if my
body is rebelling against that which it's obviously deficient in.  I am going to try 7 Keto DHEA which is a metabolite of DHEA and see if
that is more tolerable. Still, it was very validating to see that there is an actual measurable hormonal deficiency in my case.

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Offline hk1979

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #563 on: 30/05/2008 15:08:08 »
congratulations girlwind you are one step closer to freedom.....

i found the best way for me to get out of the situation is to try and limit my orgasms... i will have sex but I will not EXPLODE...

it makes sends that if dopamine is you ambition hormone, and sex increases dopamine, but orgasms cuts it off, i would rather be left hanging with the ambition hormone..... but an orgasm feels so GOOD, especially in my case. But why would God make such terrible feeling after a satisfying feeling... Science calls it "the moderater that keeps us from multiplying at a high rate"... I call it "the empty feeling of nothingness and willingless"

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #564 on: 30/05/2008 20:35:11 »
CAN YOU HELP?

I may be able to find someone at OHSU - one of the top ten med. schools/research facilities in the US.  It might be tricky because I have to go around all the red tape with the help of a friend who's dad is a stomach doctor who may have some connections up at OHSU. 

I'm also planning on seeing a research doctor in neurology in California if I can somehow get an appointment and get insurance to pay the bill (I hear it could reach up to a 1000 bucks).  If I do see him, I'll definitely show him this forum and try to convince him to join our discussions.

$1,000? Ouch! pyropeach, it would be terrific if you can get OHSU on board, but it sounds difficult (red tape, etc.). Chris/TNS is looking into Cambridge Univ., but we don't know if that will work. I think we need to try as many angles as possible, especially since it doesn't seem like we have much money to throw around (only 2-3 people here I think indicated a willingness to fund this very modestly - hopefully an altruist/endocrinologist will come forward and help us develop without charge the POIS Cure Of The Century! Maybe win a Nobel Prize?  [;D] )

So, up to you, pyropeach. THANK YOU for coming forward to help!
« Last Edit: 30/05/2008 21:03:02 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #565 on: 30/05/2008 20:54:49 »
TO EVERYONE: FINDING A RESEARCH ENDOCRINOLOGIST TO ASSIST US

B_Jim and I have worked together and we now have a letter that summarizes who we are and what we are looking for (a cure for POIS!)

We now need some email contacts at Universities or Medical Centers.

Your help is needed.

We have 2 prospects so far: Chris/TNS for Cambridge University and pyropeach for OHSU. But we don't have any contact names yet, so if you can post an email contact here or send to me by email it would be greatly appreciated! Thank you in advance!

Best wishes to all!

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Offline imre1

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #566 on: 30/05/2008 23:11:04 »
At http://slurl.com/secondlife/Midas/172/213/24 [nofollow] I put a mansion that can be used by people suffering from POIS for anything.

There is a conference room, a bar and a living room where topics regarding POIS can be discussed.

Allowing you to question any specialist from anywhere in the world.

There is also a group you can join called POIS. This is a group for people suffering from post orgasmic illness syndrome. If you give me your second life name, I can add you to the group.
« Last Edit: 31/05/2008 06:46:10 by imre1 »

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Offline imre1

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #567 on: 30/05/2008 23:32:43 »
It can't be because I'm a virgin and have POIS full blast.

Me too.

Yes you don't have to have sex to suffer from it.
« Last Edit: 30/05/2008 23:37:58 by imre1 »

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Offline imre1

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #568 on: 31/05/2008 00:07:47 »
Sore scalp?

Exactly! That is what I often refer to as my pain. First you get a tension type headache, which lasts longer then 24h (so has nothing to do with benign coital headache) and then the headache settles and what you get is a tension for a couple of more days.

Of course I am also burning up from the inside out at the same time.

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Offline imre1

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #569 on: 31/05/2008 10:27:19 »
Well, Pyropeach and i have met.

If you want to join, but don't find anybody at the location. Please add yourself to the group. When I see that there is somebody new I will peronally send them a hallo.

To join the group:

Menu: edit, search

Then find: POIS

In the group for POIS, Join (L$0)

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #570 on: 31/05/2008 21:01:34 »
I came across this page last night, and since then I have read most of this 27 page discussion.  First, it's comforting to know that there is a group effort towards trying to alleviate these symptoms. But I sense that the discussion has lost some of its direction, and it's critical that we stay focused.  For instance, in a very short period of time (months) we can learn what otherwise would have taken us a lifetime of dedicated experimentation and other research.  As a collective, we are also likely to get the serious attention of physicians who would otherwise have brushed off our concerns.  We can't let this potential go to waste by losing our focus.

It seems that most here suffer vaguely from similar symptoms, but we are all rather confident that these symptoms are caused by orgasm.  I suggest we do two things that will help our research progress.  First, make a point form list of every drug we have tried, every test we have taken, and the results.  We should then write a succinct, cogent letter in the interests of this group, and have it sent to as many physicians and influential researchers as possible.

I have had a regular MRI brain scan, an ECG of the heart, and B12 an thyroid blood tests.  None of these indicated any problems.
I have tried Ritalin and Ativan (a benzodiazaprine).  The Ritalin helped me feel a little more focused, and the Ativan helped me feel a little more relaxed.  I still felt the symptoms lingering the background though; much like if you were to feel quite hungry, and then took a drug that would make you care less about your hunger. 

I have experienced "POIS" since I was 14, about 8 months since I began to have orgasms.  My symptoms included feeling cloudy minded, light-headed, disoriented, and anxious.  These symptoms followed within about 10 minutes of orgasm. The duration and intensity of the different symptoms has varied quite a bit since I was 14.

I am now in my mid 20s, and last year I discovered something quite phenomenal.  Orgasm was not only the cause of these problems but also the potential CURE.  Of course, when something makes you feel so bad, your impulse is not to do it again.  For most of the time since I was 14, I would not masturbate, and would periodically have nocturnal emissions.  If I were masturbating, it happened at most about once a week.  I noticed now and then, that sometimes, when I had a wet dream while I was feeling quite afflicted by these symptoms, I would actually feel relieved and mildly euphoric when I woke up.  The symptoms had cleared away, and I actually felt the good sensations I hear about people having after orgasm.

For most of the year, I had completely treated "POIS" by having orgasm to sexually stimulating images when feeling affected.  If I felt bad, I would have another orgasm; I would try again and again until the "good orgasm" undid the affects of the other ones.  On average, I masturbated once a day to sexually stimulating images.  Sometimes I would do it twice if the first one didn't work.

This worked reasonably well for about a year.  After awhile, I found I needed to do it more and more often to relieve the symptoms.  Eventually I was up to 5 times a day.  This was exhausting, and cutting back had strong withdrawal effects.  I believe going back to a regimen of 1/day for a period of time may restore me again.  I also share the experience that a more powerful orgasm and *decreased anxiety while masturbating* reduces the chance of after-effects.

As far as possible psychological influences go:
- I have never been sexually abused
- When I was in my teens I felt quite guilty about anything sexually related.  Some of that carries through now, even though I feel that this guilt is irrational -- there is no fair-minded, logical argument that masturbation is 'wrong'.
- Around the time when I started feeling these symptoms, I had a school-mate who frequently harassed me, which I found quite devastating at times.

Also:
- Sometimes a hot shower with high water pressure applied to my head results in similar symptoms.
- Certain foods can cause similar symptoms.  I have felt quite unusual after several glasses of tropicana orange juice or other sugary foods.  I have measured my blood sugar though on several occasions, and it is normal.
- Caffeine can cause some of the anxiety symptoms. 

I hope I've helped by sharing some information about my particular situation, and I hope we can get things organized and start sharing a lot of succinct and specific information about what we've tried, and what tests we've had, etc.

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Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #571 on: 01/06/2008 00:15:26 »
I agree with Counterpoints' suggestion that we try to organize and focus our efforts.  The current setup, with one long continuous conversation, has some advantages, but it can make it difficult to filter out the different topics and ideas that we have come up with. 

Perhaps we could set up a blog, or some other sort of forum, which we could all post to and which could be divided into different sections, such as "Symptoms/personal history" "Bloodwork/tests done," "Attempted treatments and their results," "Theories of causation," etc. 

Would the Naked Scientist site be able to provide something like that?  Or would we need to set up  something else? 

What do you all think?  Any suggestions?

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Offline Geo

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #572 on: 01/06/2008 01:16:40 »
I have been searching to find out what was wrong with me and I believe that I suffer from POIS. I have always believed that having a orgasm and my problem was connected.

I am 24 now but it started at 19 I woke up one day and had a sever headache that would not go away for mouths I went to the doctors and they could not find anything wrong with me (blood test,MRI) I felt like at the back of my head liquid was running down the side but on the inside of my body. After mouths I took sinus medication and it went away. I never got the pain in my head again. I then started to feel,physical tiredness,mental tiredness,lethargy/derealisation,lack of concentration/brain fog,sweating and heat feelings (in fact I was sweating last night woke up and came to the internet to see what was wrong I thought that I was dying)anxiety,depression,memory problems,difficult to speak/communication,insomnia/sleep problems,stomachaches,restless/agitation,dizziness,
muscle tremors,hair problems,mouth problems,skin problems,eye problems,short. breathing,sexual pain after sex.     

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #573 on: 01/06/2008 02:34:15 »
I think Guthrie has a good suggestion.  With enough data about symptoms, tests, and attempted treatments, I would be willing to write a powerful letter summarizing our situation to researchers.  I am a medical physicist, so I have close connections to a scientific community that includes leading researchers in both neurology and psychiatry.  I can't make promises, but I think with enough data from a large group of people I could convince these researchers to commit a significant fraction of their time towards investigating our condition.
« Last Edit: 01/06/2008 02:37:54 by Counterpoints »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #574 on: 01/06/2008 02:49:30 »
TO COUNTERPOINTS AND GUTHRIE

We have started a path toward getting a research endocrinologist on board this POIS Forum to take us to the next level. Are you opposed or thinking differently about this? If so, do you propose separate paths here? I'm not sure what you're implying with your suggestions as they relate to the path we already started.
« Last Edit: 01/06/2008 02:52:06 by demografx »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #575 on: 01/06/2008 02:58:49 »
TO COUNTERPOINTS AND GUTHRIE

We have started a path toward getting a research endocrinologist on board this POIS Forum to take us to the next level. Are you opposed or thinking differently about this? If so, do you propose separate paths here? I'm not sure what you're implying with your suggestions as they relate to the path we already started.

I got the sense from reading the posts that this thread was losing some direction; people were discontinuing to post, or simply re-iterating what had already been posted.  It was also hard to go through the posts and precisely tabulate what had been tried, and what the results were: for the most part people were talking about what their symptoms were, and how long they had been affected.  This is useful, and therapeutic, but in order to learn more about the problem, and even just to eliminate some tests or medications I had been considering, it would be nice to have some more organization.

A forum with subsections -- "tests or medications taken", "symptoms, duration, history", etc would probably help with this.  This way we could come up with a comprehensive list of tests and medications attempted to match the symptoms.  The more precise and organized we are the better chance we have of finding a solution.

That's great you are working towards getting the attention of an endocrinologist! And thanks so much for continuing this discussion. 

Also, you might find this article interesting: http://www.reuniting.info/science/articles/acute_dopamine_depletion_causes_psychological_distress

I suffer from many of the symptoms described there.  I also have developed OCD tendencies. 

One last comment: I saw a researcher in both neurology and psychiatry a couple years ago.  At the time, I did not know nearly as much about my condition, but he suggested busperone.  It is a non-addictive anti-anxiety medication.  I have not yet tried it, because my orgasm solution appeared to start working, and I had already tried Ativan with limited success.  Busperone may be worth considering, however.  It appears to have no serious side effects and no potential for addiction.
« Last Edit: 01/06/2008 03:10:25 by Counterpoints »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #576 on: 01/06/2008 03:16:02 »
Counterpoints, we have 2 paths in motion (there's a couple posts on this) for a research endocrinologist: 1) Cambridge University through TNS and 2) OHSU (Oregon) a top medical facility.

If you have any contacts that will help further the effort, please let me know. Thanks for your support of the effort.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #577 on: 01/06/2008 03:19:34 »
BUSPAR

Buspar as (the only?) non-addictive anti-anxiety agent is controversial. I had very negative effects personally.

Is this the same as busperone?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #578 on: 01/06/2008 03:22:55 »
Counterpoints, since you read the posts, what do you think of the Levitra and DHEA solutions?

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #579 on: 01/06/2008 03:52:18 »
I'm sorry, I mis-spelled the drug. I meant "Buspirone".  More information can be found here: http://en.wikipedia.org/wiki/Buspirone     

It looks like this is the same as a drug called "BuSpar".

In early June I will discuss Levitra and DHEA with a specialist friend.  I will need to do some more research to form my own opinions on these solutions. I am a physicist who collaborates with physicians who are interested in applying my work in their clinical studies.  I am not an expert in human physiology. Is there anything else you would like me to bring up in particular?  If you PM me the letter you wrote I could review it and maybe add something to it.  I am used to writing scientific papers.

In reviewing some of these posts -- I did miss a few -- I found the fact that someone independently mentioned sugar as very interesting, since I have discovered that correlation accidentally.


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Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #580 on: 01/06/2008 04:14:31 »
Demografx,

No, I didn't mean to indicate any opposition to getting a research endocrinologist involved.  I just thought it could be helpful to have a different format of organizing the material we have already compiled and that we continue to compile. 

For instance, it would be good if we had a way of subdividing the different messages we post into different categories, so that if someone wanted to see all posts relating to, for example "bloodwork and results", they could have them all pulled up, without having to search through the entire 27 pages of the thread. 

This French POIS blog is like ours, in that you can read all the posts in chronological order--but you can also use the "Categories" sidebar on the left to select out different categories of posts.  http://fatigueapresorgasme.over-blog.com

Or, another option is a forum that is divided into different threads, each with its own sub-topic, such as this one: http://recover.forumup.org/

It seems that finding a way of organizing our posts would also make things easier for a researcher to read through.

Anyway, I don't know what the best way of doing this would be, but it seems like something that could be helpful.

« Last Edit: 01/06/2008 04:18:58 by Guthrie »

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Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #581 on: 01/06/2008 04:24:29 »
I also noticed that our POIS thread is over three times longer than the next-longest thread in the "Physiology and Medicine" section of the Naked Scientists forum (664 posts vs. 215 posts)!  This adds further weight to the sense that our thread might be getting a bit unwieldy.   

Is there a way for the Naked Scientist moderators to allow us to mark our different posts with different category-labels?  Or is that impossible, given the way the website is set up?
« Last Edit: 01/06/2008 04:26:14 by Guthrie »

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Offline imre1

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #582 on: 01/06/2008 09:23:27 »
Pyropeach and I have found that we are physically the same height and body build. Also we have the same temperament.

This would indicate that POIS is genetically determined at birth.

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Offline imre1

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #583 on: 01/06/2008 11:43:47 »
Also, you might find this article interesting: http://www.reuniting.info/science/articles/acute_dopamine_depletion_causes_psychological_distress [nofollow]

I have read this text and I can not find any symptoms described that would match POIS symptoms.

This is absolutely not the cause of POIS.

Actually if you can identify with this text you are not even close to having POIS.
« Last Edit: 01/06/2008 11:50:55 by imre1 »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #584 on: 01/06/2008 17:20:22 »
Also, you might find this article interesting: http://www.reuniting.info/science/articles/acute_dopamine_depletion_causes_psychological_distress

I have read this text and I can not find any symptoms described that would match POIS symptoms.

This is absolutely not the cause of POIS.

Actually if you can identify with this text you are not even close to having POIS.

Anxiety, loss of fluency of speech, confusion, difficulty concentrating, dizziness, etc. 
following orgasm?  From what I've read, that seems to fall under the symptoms that people have described here.  Not that I would WANT to have POIS -- you act as though you are some kind of authority who is excluding me from his precious group.  Grow up.  POIS at this stage is not particularly well defined, and I would be glad not to have any unusual anxiety symptoms following orgasm.  In fact, POIS was initially defined as a condition that affects middle aged men.  I suppose if you are not middle aged, you absolutely do not have POIS: you are just one of the very few people who has an unusual reaction to orgasm, but you have something different entirely *rolls eyes*.  I get the sense the motivation for your post was quite malicious; it makes me not want to help you.

My symptoms do match most of the ones described in that article.  Perhaps what I and others are feeling is partly a result of dopamine depletion following orgasm.  Who else identifies with this?
http://www.reuniting.info/science/articles/acute_dopamine_depletion_causes_psychological_distress
The only symptoms that *don't* describe how I feel are "visual and audible stimuli were less sharp", and "he felt a loss of control over his ideas", "maskface and tremor".
« Last Edit: 01/06/2008 18:15:13 by Counterpoints »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #585 on: 01/06/2008 17:21:42 »
Pyropeach and I have found that we are physically the same height and body build. Also we have the same temperament.

That indicates absolutely nothing as far as POIS being genetic.

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Offline girlwind

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #586 on: 01/06/2008 17:34:25 »
I'm more inclined to submitting our data to a research endocrinologist than a neurologist or psychiatrist. I'd like to know
the CAUSE of this condition and to treat that, rather than to treat it symptomatically with psychiatric drugs or other exper-
mental medications. In my case specifically the only imbalances found in my blood work and other tests throughout the
years have pointed to hormonal imbalances. These have included thyroid, cortisol, and DHEA levels.

I think it's a great idea for all of us to submit our personal histories with POIS to a data sheet that includes:
1) Sex, current age, current medical status and medical conditions (diabetes, heart disease, CFS, etc.)
2) Age of onset of POIS symptoms, (including whether it was a sudden or gradual onset);
3) Inventory of POIS symptoms specific to each of us (including severity of debilitation and duration);
4) Personal history relevant to POIS symptoms (Total number of years afflicted/how that's affected our lives);
5) Diagnostic tests done in attempt to find cause (blood work, MRI's, etc);
6) Any significant abnormalities discovered in those tests;
7) Attempted treatments, duration of treatments and their results;
8) Personal observations and theories about our experience with POIS.

We really do need a place to post this info in an organized way, and we need someone to compile it all for a study.
Does anyone have a concrete plan about that yet?

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Offline Bizzy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #587 on: 01/06/2008 20:16:11 »
I dont think there is a need to create a new forum with better compiled subsections, although anyone who feels the need can do so. We dont have a large volume of novel information. All the details listed so far can easily be incorporated into a letter. A comprehensive record of member details can be created but we should first try and get the attention of some research group or professional.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #588 on: 01/06/2008 22:24:51 »
Does anyone have a concrete plan about that yet?

It would be very easy to write an online data form like you suggest, that people could fill out and submit.  One of the entries could be the internet handle used on this forum, so the data could be associated with a post history in this thread.

I could write the code for the form, although I would need someone else to host it.  The application would obviously take up negligible bandwidth and data space.  Of course, I couldn't guarantee this information would be kept private, though it would likely be associated with whatever internet name you choose to submit it under, not your real name.  We could have the forms available for browsing as they are submitted, and then also continue the discussion we're having in this thread.  And we could make the form available in French as well, and have the contents translated into English and vice versa, in order to combine resources with the other French effort.
« Last Edit: 02/06/2008 01:01:12 by Counterpoints »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #589 on: 01/06/2008 22:48:04 »
I'm more inclined to submitting our data to a research endocrinologist than a neurologist or psychiatrist. I'd like to know
the CAUSE of this condition and to treat that, rather than to treat it symptomatically with psychiatric drugs or other exper-
mental medications. In my case specifically the only imbalances found in my blood work and other tests throughout the
years have pointed to hormonal imbalances. These have included thyroid, cortisol, and DHEA levels.

I think it's a great idea for all of us to submit our personal histories with POIS to a data sheet that includes:
1) Sex, current age, current medical status and medical conditions (diabetes, heart disease, CFS, etc.)
2) Age of onset of POIS symptoms, (including whether it was a sudden or gradual onset);
3) Inventory of POIS symptoms specific to each of us (including severity of debilitation and duration);
4) Personal history relevant to POIS symptoms (Total number of years afflicted/how that's affected our lives);
5) Diagnostic tests done in attempt to find cause (blood work, MRI's, etc);
6) Any significant abnormalities discovered in those tests;
7) Attempted treatments, duration of treatments and their results;
8) Personal observations and theories about our experience with POIS.

We really do need a place to post this info in an organized way, and we need someone to compile it all for a study.
Does anyone have a concrete plan about that yet?

Girlwind, I have already initiated contacts for a research endocrinologist through Chris/TNS and pyropeach here, for Cambridge University and Oregon Health - OHSU - respectively.

If you have ideas for a University or other contact, please let me know and I can send an email invitation.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #590 on: 01/06/2008 22:55:39 »
I dont think there is a need to create a new forum with better compiled subsections, although anyone who feels the need can do so. We dont have a large volume of novel information. All the details listed so far can easily be incorporated into a letter. A comprehensive record of member details can be created but we should first try and get the attention of some research group or professional.

Thank you, Bizzy, I agree. I think at this stage of the game it would be a bit confusing to carry on multiple efforts. But I am not opposed to ANYTHING that will bring us closer to a universal cure. So let's not shoot ourselves in the foot with confusion.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #591 on: 01/06/2008 23:04:41 »
ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.
« Last Edit: 01/06/2008 23:46:14 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #592 on: 01/06/2008 23:18:05 »
Anxiety, loss of fluency of speech, confusion, difficulty concentrating, dizziness, etc. 
following orgasm?  From what I've read, that seems to fall under the symptoms that people have described here...

MULTIPLE DAYS of severe physical/psychological/emotional EXHAUSTION following orgasm is the key, most common underlying trait for POIS.
« Last Edit: 01/06/2008 23:31:50 by demografx »

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #593 on: 02/06/2008 00:08:42 »
ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.

"Yes".  Though an online data form would serve to organize whatever track you're currently on, not change it entirely.  It could only help.  Why don't you post your letter?

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #594 on: 02/06/2008 00:28:04 »
And, by the way, I think it was extremely out of line for someone to say, "Actually if you can identify with this text you are not even close to having POIS", given that the symptoms in the article are ANXIETY, DIFFICULTY CONCENTRATING, EXHAUSTION, etc -- pretty much EXACTLY what people have repeatedly described in this thread.  Not to mention that people in this thread have also said that doctors have suggested dopamine depletion may be the cause of their symptoms. 

I have read the posts here too.  You are no more of an authority on this condition than anyone else who has read the posts and suffered from significant post-orgasmic symptoms for several years.

I would also guess that the intensity and duration of symptoms not only greatly vary from person to person, but from year to year.

« Last Edit: 02/06/2008 00:54:20 by Counterpoints »

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Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #595 on: 02/06/2008 01:24:44 »
Demografx--"Yes" to the Research Endocrinologist direction.

Counterpoints--I think you're right that the symptoms in that article are similar to what has been posted by people on this POIS thread.  Imre1--if you had specific reasons for thinking that that article was not similar to POIS, perhaps you can state what you had in mind.  In any case, further open discussion will probably be a more productive and scientific path than will exclusionary or absolute claims. 
« Last Edit: 02/06/2008 01:26:33 by Guthrie »

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Offline Bizzy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #596 on: 02/06/2008 02:33:12 »
Demografx--"Yes" to the Research Endocrinologist direction.

I would'nt worry about Imre1 folks. I find that he is a good guy but often confused, probably POIS overdrive and the valium he is taking.
« Last Edit: 02/06/2008 02:34:59 by Bizzy »

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #597 on: 02/06/2008 04:36:10 »
ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.

Demografx -- "Hellz yes to the Research Endocrinologist Direction"

Posting that letter would be helpful too because I will soon be putting together a concise description of what we're going through and what we require for someone I know who has connection to OHSU.  Reading your letter would help me do this.  I will try to do this ASAP, its just hard because its dead week for me now and tons of HW and projects + POIS = X_X

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #598 on: 02/06/2008 06:46:45 »
LETTER TO ATTRACT A RESEARCH ENDOCRINOLOGIST

The following letter to Chris at TNS (after reading it, he agreed to inquire at Cambridge U.) can be used as a template to send to other contacts. The bold type is B_Jim's addition, which B_Jim created after the letter was sent to Chris.

Everyone: feel free to initiate a contact! But please let me know who/where so we don't duplicate efforts!
-----------------------------------------------------------------
Hi Chris,
 
Many thanks for coming by and telling us about the second life broadcast.
 
I recently became moderator at the POIS Forum, with 200+ postings and a very strong desire to see a cure for everyone of this vicious malady (average 4 days' severe exhaustion, brain fog and other nasty symptoms following orgasm) - It has ruined a chunk of my life, and I daresay most listmembers at TNS/POIS.
 
Chris, with your connections to Cambridge University, would it be at all possible to refer us to a research endocrinologist there? Someone who could go through all the postings and make recommendations leading to  a low-risk cure. I have already cured myself 75% with Levitra, but that is risky for those who don't have ED.

We also have a case of someone who has been totally cured after taking a small dose of DHEA just after ejaculation. That's why some of us think that perhaps the adrenal glands are the main source of the problem. Our adrenals may be "slowest" to restore the normal levels of hormone cycles induced by ejaculation (cholesterol => Pregnenolone => DHEA => testosterone) in the mitochondrial adrenal glands cells. We think stress (cortisol) is probably an increasing factor of the problem.

Maybe in my case, Levitra could have an effect on dopamine and it may have a stimulation effect on the adrenal glands, as a side effect.
 

It seems to me that finding a cure through this research would be an incredible medical breakthrough that could be published. There was much fanfare when Dr Marcel Waldinger, a European medical researcher, completed his pioneering study of this ailment some years back, but since then he has not been very responsive to the next step. Dr Waldinger formulated a hypothesis that POIS could be an auto-immune problem. But we don't think it's the only explanation. There are different forms of POIS. The cases described by Dr. Waldinger are extreme (7 days flu-like state)and his experience is with only a very few patients.  

Chris, your help would be greatly appreciated!
 
Thank you very much,
 
Demografx
« Last Edit: 02/06/2008 07:22:30 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #599 on: 02/06/2008 06:57:56 »
ATTENTION EVERYONE PLEASE: RESEARCH ENDOCRINOLOGIST

Since this effort is underway for some time, yet ideas have been formulated only recently for other directions, I should ask the question: is anyone here opposed to the track I'm on? i.e., B_Jim and I have created a letter to find a research endocrinologist who will go through these 27 pages of posts and make concrete recommendations for low-risk cures to test. We are already in progress with Cambridge University and Oregon Health (OHSU) - per pyropeach, a top-10 rated medical research facility.

Please post your "Yes" (agreed) or "No" (opposed) here by June 8. This will also tell me who is "on board" with this project.

Thank you very much. I look forward to hearing from you.

"Yes".  Though an online data form would serve to organize whatever track you're currently on, not change it entirely.  It could only help.  Why don't you post your letter?

Have you seen the posted results of the data form B_Jim compiled? Also, I posted the letter. As I mentioned previously, anything that can help would be most welcome!
« Last Edit: 02/06/2008 07:34:06 by demografx »