[demografx]

Before POIS treatment:
(December 2, '08)
                                    reference range
%FREE T            1.47 %           1.5 - 2.2
FREE T             24.4 pg/mL        35 - 155

I have my free testosterone results here; but they are in ng/mL since I am in europe and I don't know how to convert to pg/mL.

So, my results are:
0.89 ng/mL   reference range 1.00 - 3.7
3.09 nmol/L

This might help to convert:
http://answers.yahoo.com/question/index?qid=20080727171025AADDARl

[RhythmSpring]

Hey all. What's the deal with cabergoline? Has anyone really tried it out?

[Z_one]

Dear all,

I kindly urge all POIS sufferers that are active on this forum...and particularly those of you that are living in the US, to seriously bring up this matter to the MEDIA. We have all been speculating going & back forth and turning in circles and back to spirals into vicious circles. Some of us claim to be cured others not....some believe some don't...all that while unfortunately most of us are not even specialists!!....Well yes brain storming, sharing ideas & experiences, and speaking out are all healthy at times....but I think it's time to call it game over,,,,before our lives are over!!

POIS has already taken a very big chunk out of my life and many others....I don't know about you guys but I have thought of suicide myself many times already.....while I know that my faith won't allow me to do it....The thing is I have absolutely no idea wether i will be able to continue my life normally with such a devastating yet by far still underestimated and camouflaged disease. The worst is that people around us don't have a heck about what on earth is wrong with us and they think at times that we are a kind of Zombies! I already got laid off last year due to POIS and I have no idea whether I am ever going to have a mother to my children....

It happens that I work in the advertising field..and I can confidently remind you that the power of MEDIA is HUGE! Thus as to greatly reduce time of research and endless speculations and greatly increase the probability of finding an accurate answer in terms of both cause and cure....we need to STRONGLY  SPEAK OUT TO THE WORLD. A simple youtube video and a forum though both beneficial are not enough at all and with very limited reach...we need much more than that,,,,such as DR. OZ...Larry king....Fox news...You name it....one thing is sure we need to act now...and do it right!

I kindly urge those of you who are in the US to get together write an official letter with all necessary backups, proves, witnesses and send it to the concerned people, media and organizations......The more people are aware the less time we waist and the faster we find a cure to all.....Can you imagine how many concerned people, POIS sufferers, and specialists we can reach through a simple TV show like Dr. Oz for example? We're talking about hundreds of millions of viewers from around the globe that's for sure....

I am currently settled in a third world country so there isn't much I can do from where Iam....but I am definitely ready to help and support whoever is willing to take the initiative for that.....Again the power of Media is greater than you think...so hopefully will be worth my and your efforts ....

Thx for listening & God bless....

[mister_z]

Dear all,

I kindly urge all POIS sufferers that are active this forum...and particularly those of you that are living in the US, to seriously bring up this matter to the MEDIA. 

I agree. I am not in the US however.

[Pablo445]

I have been reading many posts on this forum. Impressive amount of work and thorough thinking. Congratulations everyone! And a special "thank you" to Demografx who does a great job as a moderator. But I could not find anywhere if someone actually understands the mechanism of POIS? What happens in the neuro-endocrine chain reaction that is different for a POIS sufferer?

I have noticed that for me any stressful event recreates the same problem but with less intensity. If the stressful event happens while I am in POIS it feels like I will die.  It makes it much worse.

Here are 4 opinions from professionals I have talked to. These were casual encounters, I am not their patient:

1. This is basically a clinical depression and for some the symptoms are more related to the sexual physiology. If you fix the depression these symptoms will disappear. My comments: yes I do feel depressed while in POIS but my life is good. I love my life. I have no reasons to be depressed at this time. Besides I do not generally feel depressed outside of POIS.

2. This is part of the burn-out syndrome. You are exhausted and any stress is just bad for you. Although a pleasant experience, orgasm is actually a huge stress in your body from a physiological perspective.  My comments: Yes I do feel burned out and exhausted but my sense is that I feel like that because of POIS - not the other way around. I may be wrong though.

3. From a Oriental doctor. Your kidney energy is completely depleted. This is common nowadays and a well known syndrome in the East. When you are at that point it takes 18 to 36 months to replenish the energy with massage, acupuncture and Chi strengthening herbs. My comments: even if I did study oriental medicine for few years I finally admitted I am a Western civilization white boy and I never quite "got it" with the eastern traditional perspective. But why not? That could be a good approach. But wouldn't I be lacking libido and maybe with an ED problem?

4. An experienced herbalist. Your endocrine/nervous system is depleted. Now is the time to take it easy, read good books, relax by a fireplace, do some light yoga, and take nourishing restorative herbs. It is imperative to avoid as much as possible everything stimulating: such as stimulating herbs, alcohol, coffee, stress,  etc. According to her it takes up to 3 years to recover from this and the big mistake is to try to fix the problem by stimulating the energy. It only makes it worse. My comments: so far I can only agree with her that anything stimulating makes me feel worse afterwards - including coffee, tea, chocolate, alcohol (beer especially), but also a problem at work, a disagreement with someone, even a scary movie will make things worse. It looks like I have become extra sensitive to "everything".

Anyway there are many ideas and perspective about this including literally hundreds of good ideas from this forum. I wish I could have at least a better understanding of the problem. Trying to find a solution when one does not understand the cause is like shooting a rabbit with your eyes close. Or whatever - you get the point!

My mind is not clear yet today so forgive me if my thoughts are somewhat scattered. (if there is one group in the whole world that should be forgiving it has to be this one). I have a good mind normally! :-)l  I am a Mensa member with an actual IQ of 155 but in POIS it feels like 75! It is so frustrating to not being able to count on my own mind. Arrrgh!

Contrary to many others I was not always like that. I had a very active sex life up to 34 years old ( I am 57 now) without any real POIS symptoms. Then I went though a very difficult and stressful event and it all started. Since then it fluctuates. Sometimes it is not a major problem if I have sex every 2 or 3 weeks. I just feel a little bit "edgy" the following 2 days, but nothing else. But at other times I get full blown POIS. It is unclear at this time why this is so. I have noticed I am usually much better in the summer and I get worse in November. Like now. So I will try a therapeutic light treatment to maintain the right level of serotonin - trying to fool my body/mind into believing this is always summer...  I will report of course.

[GoingCrazy]

Then I went though a very difficult and stressful event and it all started. Since then it fluctuates. Sometimes it is not a major problem if I have sex every 2 or 3 weeks. I just feel a little bit "edgy" the following 2 days, but nothing else. But at other times I get full blown POIS. It is unclear at this time why this is so.

Yes!  I also went through a stressful event which involved me taking coffee, so biological, and so did somebody else here on this forum who claimed that after taking adderal or some drug like that, than felt POIS symptoms... To me this just happened in one day I felt like I lost it after taking coffee for a year.  Does anybogy else have a"stressful" event which seemed to have caused this?  Maybe our bodies are in anti-stimulation mode?

And I am 19, so I believe age isn't a factor.  I am also like you, I can have sex every 2-3 weeks, but only once or else I go off the deep end.

[GoingCrazy]

I've also noticed a weird reaction when just gasping for air really quickly for about a minute, neither good or bad, anybody else have a similar reaction.  It could just be a normal response

[Z_one]

 So I will try a therapeutic light treatment to maintain the right level of serotonin - trying to fool my body/mind into believing this is always summer...  I will report of course.

I have been in the Gulf for the past three years,,,where the Sun hits for 99% of the year....and I can assure it did not make any difference in my case,,,,but try if you want....though I don't think light therapy is going to make any difference for many on this forum....

In addition, thx for sharing your consultations and views....but honestly and with all respect , I think the problem is MUCH more than : Adrenal exhaustion, Chi, kidneys, depression & depletion.....Otherwise , half the planet would have been suffers of POIS & specially that more than half of the earth's population live in poverty and thus through extreme daily stress....

Just a thought....

[exponent]

Hi, this will be my first post, just wanting to describe this syndrome as it applies to me right now. I have not read every page on this topic, just the first couple and last couple, you've gotten a lot of feedback but not much in terms of solid treatment breakthrough.

I'm 19, and a bodybuilder. Currently in my physical training I am bulking up, I'm at 205 lbs and am mostly lean. My sex life is variable at the moment, but recently (past few months or so) I have been extremely lethargic after ejaculating. Just this morning I went to the gym for my normal saturday shoulder workout and had a couple of emissions this morning beforehand. Merely the routine of going to the gym forced me to go, despite this lack of energy, but my strength was quite noticeably diminished during my first exercise (military press) and in the following exercises, for the first time my body began to ache in that "flu like" sense. Even after cutting the workout short and returning home I continued the aching, in my bones and joints.

Normally I don't experience the aching, but the cognitive disability in my worst enemy. It acts upon me in a way that many of you may not share. Whenever I'm suffering from it I feel like I absolutely cannot look someone in the eye. I just avoid their faces all together. I do experience some fading of vision as well. All of my symptoms usually fade within 2 days at most, and I avoid masturbating and sex most of the time so it isn't frequent, I hope to be able to act out my desires more fully, avoiding isn't good enough anymore.

In my own thoughts, before discovering this site I noticed  a few things, One is that compared to times before my affliction with these symptoms I have significantly less semen with each emission, even if weeks have passed between them. I feel like my body may be pulling resources from other important functions to help produce sperm because I may be deficient in something.

another is that carbohydrate consumption does have a good affect on the syndrome, elevating mood, but at this point in my training I'm eating so many carbs already that I can't afford to eat but so many more without gaining necessary amounts of fat.

the main thing that I'm looking at is starting supplementing additional nutrients specifically for sperm production, to see if my body is spared when there is a surplus. So B vitamins, and Zinc are on my list, but I don't know what else.

I don't know, thoughts?

[ophicus1213]

This may help us in our quest but i can rememeber the exact night everything changed for me.  It was november of 1999, and I chose to "O"twice in a row.  The second session was very painful, because i was sensitive but i continued anyway.  After the second "O" it felt like something had seriously gone wrong.  I was in a state of panic, and I felt trapped.  Waves of sensation were flowing all over my body, and it continued all night long, i could not sleep.  I felt as if i was floating on water.  The state i lived in for the next day just felt wrong, and uncomfortable.  On the second day I awoke feeling completly recovered.  I stayed that way for an entire week.  For some reason I did it again and even without an "o" my body went back into the same shock, and I have lived that way perpetually for ten years.  I do however remember a similar feeling as a child when I had consumed nearly five cups of cofee.  Cofee which contains caffiene, which plays on dopamine and prolactin.  Currently I have disbanded my experiments with anihistamines, and methionine, having dwindling sucess.  It seems that every time I have found something that may help, it helps for only a few days and stops.  My last blood test showed extremely high blood sugar, so my focus is now on cortisol. 

[demografx]

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




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

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

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:

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 nearly 3 years, which has attracted over 150 POIS sufferers worldwide who have posted here, plus more than 400,000 page visits. Not bad for a rare malady!

[demografx]

exponent, 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: over 2 years' worth of posts from 150+ Forum members, and an additional 150 POIS sufferers found on the Internet, but not on this forum.

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

for example, I tried
demografx POIS site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" 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#.

[Limejuice]

Has there been any contact from Dr. Waldinger or Dr Schweitzer lately?

I wonder if they would think differently if they knew we were willing to sponsor POIS research personally.

[Pablo445]

Remember Curly of the Three Stooges? He used to say: I AM TRYING TO THINK, BUT NOTHING HAPPENS!!!

Now I believe he was suffering from POIS.

Have a nice Sunday!

[Defsync]

Dear all,

I kindly urge all POIS sufferers that are active on this forum...and particularly those of you that are living in the US, to seriously bring up this matter to the MEDIA. We have all been speculating going & back forth and turning in circles and back to spirals into vicious circles. Some of us claim to be cured others not....some believe some don't...all that while unfortunately most of us are not even specialists!!....Well yes brain storming, sharing ideas & experiences, and speaking out are all healthy at times....but I think it's time to call it game over,,,,before our lives are over!!

I was thinking someone who has a decent amount of charisma ( i do not ) might throw up a  respectable POIS Facebook account, and start friend requesting every damn person in Facebook, especially doctors, med students, psychiatrists, media personnel, etc.

But yes, media personnel email addresses can be found everywhere, maybe we could start a post here for the collection of all those email addresses, then once we have a few hundred each and everyone one of us email them a good form letter detailing POIS (short and to the point, demografx came up with a good one), then for the personal touch at the end each of us add a few lines of how POIS has affected our own life personally.

[demografx]

Has there been any contact from Dr. Waldinger or Dr Schweitzer lately?

I wonder if they would think differently if they knew we were willing to sponsor POIS research personally.

Limejuice, thank you! I was thinking about this, but honestly wonder if they are the best bet for us. They have not been responsive to date. This is not necessarily disparaging because they have other priorities. But we have also come a long way since their 2002 study of two (2) POIS patients. We now have over 300 POIS sufferer's cases reported and summarized by B_Jim.

Perhaps we should all think first what qualifications do we really want? I think we should all decide that quickly so we can agree who to approach.

I am all for approaching Waldinger and Schweitzer if we give that a little thought. Limejuice, if you still think I should send out preliminary feelers right now, let me know, it can't hurt. I'll be glad to tell them we're considering a few candidates. Let me know and again, many thanks for bringing them up!

[demografx]

...email them a good form letter detailing POIS (short and to the point, demografx came up with a good one)

It was mostly Counterpoints' words. Martin also contributed.

[Coreman]

I'd like to greet all the fellows, and sum up my last 6 months (me, myself, and my POIS  []):

My present regime (based on an evening O, 2 times a week):

Right after:
-Relora, 750 mg (Cortisol)
-Valerian (GABA)
-Klonopin (0,25 mg, GABA again) - Benzo...
-Calcium-Magnesium caps (600/300 mg)

In the morning:
-1500 mg Tribulus
-Klonopin (0,25 mg, GABA) - Benzo...
-St John's Wort tea per 2 hrs, during the day
-Chocolate (craving for sugar/choc...)

This is my best practice. It may sound weird, but i don't care, it makes me feel much better.

Which is for what:
-No Tribulus - little motivation
-No Klonopin (or considering the past without that) - strong    anxiety blocks my thinking
-No St'John's or Chocholate: having bad mood, feeling small, being irritable, having strong brain fog..

As you can see, this pile o' drugs are for the GABA, Serotonine and Dopamine systems. My method is experimenting, testing - which helps, what sucks.

Interestingly, in contrast to others, refined sugar helps me (it makes my mind clear) (aware of its "health benefits")
 
More interestingly, if i miss Tribulus, sexually I feel like I was 10 years' old, without any sexual orientation..., feeling completely empty.. (? -Testo imbalance... surely)

Thanks for listening. Nice, isn't it?!

Good night

Coreman
 

P.S: Demografx: happy to hear you feel much better, you really deserve it!

[Pablo445]

I just read the POIS research study from 2002 by Waldinger and Schweitzer.

Thank you Demografx for sending it. I appreciate all the great work you do for us.

This "study" really is just a very basic starting point. At least they offer a clear statement: "POIS typically is a postsexual disorder, suggesting that a factor associated with ejaculation or orgasm serves as a trigger for the induction of a cascade of biological reactions." But that's about it! The complaints are just reframed in medical words.

I think the sentence that caught my attention the most just because it resonates so clearly with me is "He remarked that one ejaculation made him more tired and ill than walking that many kilometers." How sadly true! When I am "out-of-POIS" I swim, bicycle, cross-country ski, hike, etc. and it feels just great. But then one single ejaculation makes me drag my body for a week or more as if I had run 2 marathons during the same day. But not even quite like that - it is more like a mental, emotional, life energy emptiness. It is way beyond just tired. Or even beyond exhaustion. It feels more like dying inside. Very creepy in fact. Fortunately, like a mythical phoenix, I come back to life after 7 to 9 days. That is the only positive thing about this disorder.

A quick question: I have noticed that the surface my tongue becomes whitish (not candida like) on POIS day 2-3-4-5 and then it clears up. Do you have the same observation? Although a seemingly small symptom it could actually mean a lot if it is a common observation.

[Limejuice]

Thanks Demo.  I trust your intuition.

Defsync, I agree.  I agree with everyone about media publicity.  I also think Craigslist is another avenue.