[demografx]

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?

[pyropeach]

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.

[girlwind]

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.

[hk1979]

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"

[demografx]

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?  [] )

So, up to you, pyropeach. THANK YOU for coming forward to help!

[demografx]

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!

[imre1]

At http://slurl.com/secondlife/Midas/172/213/24 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.

[imre1]

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.

[imre1]

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.

[imre1]

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)

[Counterpoints]

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.

[Guthrie]

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?

[Geo]

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.     

[Counterpoints]

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.

[demografx]

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.

[Counterpoints]

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.

[demografx]

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.

[demografx]

BUSPAR

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

Is this the same as busperone?

[demografx]

Counterpoints, since you read the posts, what do you think of the Levitra and DHEA solutions?

[Counterpoints]

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.