[John21 (OP)]

Demo,

My psychiatrist-friend (he was my therapist, now retired) said that my depression (a few years back) lifted when I slept poorly because sleep-deprivation - to a point - can be an excellent antidepressant.

I wonder then if some types of insomnia are the body's natural defence against depression. I have noticed that I am often quicker of thought with less sleep, and likewise too much sleep results in lethargic thought.

Concerning the Downsides of Oversleeping link above, I would think that it isn't oversleeping per se that causes problems, but rather that people who have certain medical conditions tend to sleep more as they naturally need more rest.

[demografx]

John, I couldn't agree with you more. On every single point you just made.

[Langjahr]

It's taken me 3 years just to come up with a name for what I have. I've typed in Yahoo and Google, "fatigue after sex", "headache after sex", "joint pain after sex" to no avail until today. There's a name for what I got!

I had sex last night and here are my symptoms. I have:
-Fatigue  (1-5 days)
-Sinus and facial pressure (1-3 days)
-sneezing attack (usually happens 24hrs after sex)
-joint pain (1-3 days)
- my legs and feet are hot (1-2 days
-lightheaded (3-7 days)
-brain fog (had to rewrite this 3 times) (3-7 days)
- with in 24 to 48 hrs I get a migraine that lasts 1-2 days. I use Imitrex to releive it. Took me 5 years to get the doctors to believe I had headaches. Seems as though once you describe your symptoms, they write off anything else you say.

This has been going on for 20 years! I've complained to 3 MD's and was blown off as; "the symptoms you describe are too general"

I've now read 10 pages of posts and I'm greatly relieved that I'm not nuts!!! (well, not totally)

[demografx]

Langjahr, welcome to the POIS thread of The Naked Science Forum!




Langjahr, don't feel too bad, I've got over 30 years of this agonizing nonsense. And, don't worry, you're as "nuts" as the rest of us, trying for decades to figure this out!

But the progress here is steady and firm. Some of us, including myself, have found significant relief.

And we continue to find progress in dealing with the medical community, which has frustrated you and the rest of us. There are many posts for you to review on this subject.

We look forward to your next post!!

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

Please see "B_Jim"'s POIS Forum 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:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send me a Private Message with your regular email address 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 the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: 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 for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 300,000 page visits. Not bad for a rare malady!

[NakedDynamo]

Hi Everyone, Firstly I'd like to thank you all for setting up a place to discuss this issue openly. It has helped immensely knowning that it is a problem, and there is a community actively experiementing to solve this.

I'm from Australia and have been suffering from POIS (like most others an unknown term until now) for as long as I can remember. I've now tried Fenugreek with limited success. Can't seem to get Relora in Australia, but have paid a hefty fee to bring it in from the States (Fingers Crossed).

To the leaders of this Forum - Some Suggestions to bring this to the wider attention of the community.

1. Have we tried appealing to the Media in the US? ...or even Dr.Phil, Oprah Winfrey, The Dr's...writing to them. If we can get air time...It could lead to a lot more interest.

My suspicion is that POIS is much much more common than we might think. Like myself- I just thought it was normal, or just a result of my poor diet. By getting this out, perhaps more people will also come forward recognising this as a problem and ultimately more interest from the scientific community or drug companies.


2. I've read that perhaps funding is an issue to get some scientific research on our side. Don't know about others but I've already spent $50 USD on stuff to try. If somehow we could start up a 'fund' to collect $$ as a starting point to attract researchers to look into this issue.

That's my two cents for now - Thanks Again for this Forum.

[CertainlyPOIS]

I dont think tv will accept us, we dont have that kind of dramatic story to back up the situation on how it is changing life and also you cant see pois so it will be hard for them to believe and attract viewers.

I love the idea but i dont think american media will accept.

[demografx]

NakedDynamo, welcome to the site! Since you came in right after my welcome note to Langjahr, I won't repeat it.

Please familiarize yourself with our resources, in the post to Langjahr directly above yours.

Since this forum started 2 years ago, we have discussed and/or followed through with many of the things you mention.

We have someone promoting us at The New York Times hoping to get coverage. We have made some other attempts, but our resources are extremely limited.

Another impediment to being more aggressive with media coverage is that most of us wish to remain anonymous.

We have concluded that our malady is very rare. Which is why it's been under-researched and which is why we get blank stares about POIS from the medical community, which mostly has never heard about this before. We have all experienced this lack of awareness, such as being referred to psychotherapists or dismissed for one lame reason or another. But we have gotten much better at working with the medical community.

We have sought funding and studies, without success so far. Again, we have very limited resources to even pursue that.

However, the progress here has been phenomenal. I have made more progress personally through the forum, in two short years - than in all the 30+ years I've suffered with POIS and visited experts around the planet and tried every trick in the book to get relief.

Please review as many of the posts as possible, and we look forward to your participation in any way that can help!

Thank you very much for all the interest you expressed.

 

[NakedDynamo]

CCconfucious...Are you Kidding?

I can seen the headlines already.

A Silent debilitating condition affecting Millions of American Males and possibly hundreds of millions more around the world.

A condition that affects their ability to function properly and affecting every Aspect of their daily life. Leading to severe depression, Anti-Social behavior, Chronic Fatigue etc..

You or someone you know could have it - Suffering in Silence not knowing you or they have it. Yet the symptoms are instantly recognizable by sufferers.
 
There is a group that is actively recognizing this condition..and they are screaming for scientific validation as millions more sufferers are coming forward.......coming up NEXT on Oprah..

 []

[NakedDynamo]

Demografx. No problems. I've seen many welcome notes over the pages..so all good. I feel welcome here already  []

It seems there are some issues to overcome then.

1. Lack of Resources to gain Media coverage:
If someone here could write (I think all the material is already here) an article that is worthy to be published and just massively submit it to as many News sources as possible to be included. Why stop with New York Times...What about Playboy, Penthouse (where more sufferers are likely to be) Mens Health Magazines etc...Many Online news sources also...

2. More Emails to popular Medical Sites, at least referencing the condition. Maybe pointing to this site..

3. Fully commend you and everyone's efforts here on trying to go to the WHO....Fingers Crossed.

4. Rare...
I'm not entirely sure about this. Perhaps it varies a lot in people...and people don't often consult doctors about this type of condition....because they think its just normal. Myself for example had No idea it was a problem until I found this site. I was just expecting to google a solution and find it on Web MD or something - take more Iron or somethine. I think the more people know about this, the more will come forward..

In the very limited reading I have done on (Ancient) Asian Cultures, they have seemed to want to 'preserve Semen' to preserve energy. Leading to Taoist and Tantric excercises. It may be that this was an ancient way of dealing as best they could with POIS without modern science. Having said that, I read on this forum someone suggesting Acupuncture...Might have to try that.

5. Peoples desire to be anonymous

I don't think we need everyone to put their hand up to be on TV. But Just a handful of willing particpants (I read you had 300,000 new hits to this forum)..I'm sure one or two would be happy to tell their story on TV.

Just My thoughts. Would really like to see this thing sorted out for everyone here and of course myself.

 []

[NakedDynamo]

B_Jim. Thanks for the Welcome!

Okay..Hey, Its Oprah. I'm allowed to exaggerate  []
Seriously though...I think people don't 'Suffer' so much as just 'deal with' or 'put up' with this, thinking it's normal.

I do think there are a LOT more sufferers out there.

[John21 (OP)]

I am still mystified that I have experienced no symptoms this time around. Racking my brain, here are some possible reasons:

1. Dietary change (previously stated)
2. Recent Relora use (did it change something?)
3. Recent exercise change: High adrenaline/ intense cardio workout once a week
4. Sleep change (I am doubtful that this could bring total relief)
5. Unknown factor

[demografx]

Welcome.

Millions of American Males and possibly hundreds of millions more around the world.

[]  [] After 2-3 years of search I have only 260 testimonies of person suffering of symptoms after orgasm. Prevalence might be > 1/10 000 (pure speculation).

I had the exact same reaction to the numbers as B_Jim. I'll bet no one here has ever heard their doctor say, "Oh, yeah, I've heard of that before."

As I mentioned in my post to you, POIS is very rare.

But I'd be very happy to be proven wrong!

[demografx]

John, this is bizarre!!! Has it ever happened to you before?

[demografx]

It seems there are some issues to overcome then.

NakedDynamo, frankly, most of our time and energy is spent helping each other here...because no one else will. That includes things that are most basic, like what kind of doctor to see, what to say, what should we test, etc.

The time and energy we have put in, so far, "outside" has not paid off, and we haven't gotten great encouragement signals.

If you'd like to help in that arena, we'd welcome it! I've already put in significant time - along with others here - and we just haven't seen the return.

I'm very familiar with marketing, publicity, advertising and the like, that was my career for decades.

We could do mass publicity fairly easily, but it would still take dollars. That subject was brought up here and we didn't get a lot of reaction. Also, someone would have to be willing to field the calls from the media and do some significant follow-thru to get our stuff placed properly. It's a job, I've done that before.

I don't wish to discourage anything. But I do want to be realistic about resources. Many thanks.

[Counterpoints]

I am still mystified that I have experienced no symptoms this time around. Racking my brain, here are some possible reasons:

1. Dietary change (previously stated)
2. Recent Relora use (did it change something?)
3. Recent exercise change: High adrenaline/ intense cardio workout once a week (singletrack mountain biking)
4. Sleep change (I am doubtful that this could bring total relief)
5. Unknown factor

Perhaps an instance of the "good orgasm" / "bad orgasm" phenomenon?

At certain times in my life, POIS has also affected me less. I think this has been dependent on long-term healthy habits (e.g. good diet, good amount of sleep, exercise, abstinence from masturbation, sexually explicit images).

[Counterpoints]

NakedDynamo,

Just to add to what Demografx said....

I think it's very possible to accurately describe POIS in a way that others would see this as an urgent condition worthy of immediate attention -- and have a more general audience interested in our experiences.  In fact, after Waldinger's paper, I believe filmmakers started to make a documentary in Europe, although something fell through (at the time -- not enough people came forward with POIS, not enough money.. ?). 

So yes, this can be done... what you're hoping for is entirely possible. 

But it's not easy.  It requires a lot of dedicated work.  We'd need to treat the project like a full-time job, and several of us would need to collaborate "full-time" for a period of months.  Even with this, we'd face a lot of rejection before we got cooperation.  (Just like a good actor would often have to make many auditions before his talent is recognized).

Are you up to it?  Are you that dedicated? Because many people come to the forum with a lot of enthusiasm for various projects (double blind testing, etc.), and are surprised we haven't done this or that. But within a week their energy fades away, and weeks later they have basically disappeared.

So yes, by all means, tell us your plans, ask for help (I'm sure many would be willing to contribute in at least small ways -- e.g. reviewing letters...), and so on.  But don't expect it to be easy.  You'll need to be really dedicated to see great results.  Setting up a timetable might be a good first step.

[John21 (OP)]

All,
I have had durations in the past when I had zero symptoms, the exception to the rule. My gut feeling is that they all had some specific thing in common. It is very annoying not knowing what that difference is!

[Limejuice]

I've experienced two new POIS symptoms over the past six months that I want to share.

- Runny nose
- Sneezing

I've never had physical POIS symptoms for 15 years.  Now I've developed two.

It feels like my body is becoming very sensative after orgasm.

By the way, this tread has become a work of art by the people/artists that have created it.  I couldn't fully express my graditude.

[demografx]

NakedDynamo,

Just to add to what Demografx said....

I think it's very possible to accurately describe POIS in a way that others would see this as an urgent condition worthy of immediate attention -- and have a more general audience interested in our experiences.  In fact, after Waldinger's paper, I believe filmmakers started to make a documentary in Europe, although something fell through (at the time -- not enough people came forward with POIS, not enough money.. ?). 

So yes, this can be done... what you're hoping for is entirely possible. 

But it's not easy.  It requires a lot of dedicated work.  We'd need to treat the project like a full-time job, and several of us would need to collaborate "full-time" for a period of months.  Even with this, we'd face a lot of rejection before we got cooperation.  (Just like a good actor would often have to make many auditions before his talent is recognized).

Are you up to it?  Are you that dedicated? Because many people come to the forum with a lot of enthusiasm for various projects (double blind testing, etc.), and are surprised we haven't done this or that. But within a week their energy fades away, and weeks later they have basically disappeared.

So yes, by all means, tell us your plans, ask for help (I'm sure many would be willing to contribute in at least small ways -- e.g. reviewing letters...), and so on.  But don't expect it to be easy.  You'll need to be really dedicated to see great results.  Setting up a timetable might be a good first step.

Counterpoints, thank you very much for greatly augmenting my post to NakedDynamo!

We all want the same thing, but getting down to the nitty-gritty of action required, with many dirty laundry details, has so far escaped us.

Just to reiterate my earlier point in a different way, if I had the choice of putting my next 10 hours into forum "marketing" or helping the forum to facilitate the flow of information and medical networking, I would take the latter.

That raises the question, why not just take 2 hours out of the next 10? Well, that waters down my effort here, and it's not much time "out there" in the big bad world of competing for medical research attention with AIDS, malaria, swine flu, cancer and the like.

But I (and others I'm sure) will continue to do what we can along the lines of WHO, NY Times, university funding and research, etc.

And I'll even chip in for NakedDynamo's airfare from Australia to appear on Oprah! []

[demografx]

I've experienced two new POIS symptoms over the past six months that I want to share.

- Runny nose
- Sneezing

I've never had physical POIS symptoms for 15 years.  Now I've developed two.

It feels like my body is becoming very sensative after orgasm.

By the way, this tread has become a work of art by the people/artists that have created it.  I couldn't fully express my graditude.

Limejuice, thanks a bunch for the compliments to this forum!!

I get occasional stuffed nose on Day Zero. Wish I knew why, but a similar sensitivity has developed. In my case, it's intermittent.