[girlwind]

Guthrie, I'm curious. You're the first person I've heard mention a partner in the two weeks I've been posting. How does your partner respond to your illness?

Hey Steve--Guthrie's not the only one with a partner. There are a few married people on this forum, and I too have a long-term
partner. In my situation, I am very grateful to be with a truly compassionate male human, who is not attached to the "standard
model" of sexual intercourse--with the standard beginning, middle and orgasmic end. Because my libido tends to be rather low
(a common issue with those who have CFS), and I also have POIS my partner and I have had to redefine sex to make it work for
us. This is an ongoing negotiation, sometimes easier than others. What has made it possible is that we are really good friends,
who love each other a lot and who want to support each other in getting each of our needs met. Everything else, including honest
communications and patience and empathic understanding, is secondary.

[Guthrie]

Guthrie,

I get away , scott-free, 10-15% of the time. That was the most perplexing part of the disease , for me. Also for EM's there's an even higher percentage.

I realize that some people may get away scot-free a certain percentage of the time--I simply wanted to emphasize that it had never happened to me before, so I was trying to figure out what could have been the cause in this exceptional instance.

[Guthrie]

Guthrie, I'm curious. You're the first person I've heard mention a partner in the two weeks I've been posting. How does your partner respond to your illness?

Steve, my partner is very understanding and compassionate with regard to my POIS.  We are able to talk about it openly, which definitely helps me to worry less about it with regard to our relationship.  She is understanding of the fact that my inclination to limit the frequency of my orgasms with her does not mean that I am any less attracted to her.  I'm extremely grateful to have her support, and I just want to reassure others out there that it is possible to have a good relationship despite POIS.

[underwater]

I've been married 30 years. POIS is just one issue in a lifetime of many issues.
It all works out okay. As Steve has so eloquently observed, there are many dimensions to this existence. However, to be honest, POIS for me thankfully was "tolerable" all the way to age 50 or so; I'd call it an uncomfortable nuisance that drove me batty for 2 days. Since then 3-5 days. The last 10 years have been the worst. My wife deals with it, thinks I'm a little nuts, which I am. Right now, I'd just take peace of mind and tranquility 24/7----------------

[rock27]

Thanks for your post Guthrie. I have a working hypothesis that actually your experience supports.

After having an orgasm, in most men the body produces comforting hormones. So most men feel good after sex and fall asleep. Some men though,  after orgasm start producing hormones that leave them feel very strange. For example, I feel anxious and in some perspective very alert after orgasm.  Instead of feeling relaxed, the body gets into overdrive.  I actually don’t really fall asleep anymore, just trying to. 

Because the body works very hard producing these hormones, you get exhausted. These hormones also make your immune system weak, so you easily get colds or other injuries, you’re allergic to stuff you otherwise can stand easily, or get inflammation in stomach area. After a while though, your body doesn’t produce the excess-amount of these hormones anymore.

In early stage of your POIS experiences, your body then returns to producing the normal amount of these hormones, so you feel good again. In the start of my POIS, this was just after one day. After a few years, this turned to 2 days. In later phases of your POIS adventures, in my case after 7 years, there is another dimension. After the overdrive phase, instead of returning to producing the normal amount of this hormone, the body is now just not capable of doing this anymore. It is exhausted. So then (in my case in day 2 or 3) you get different symptoms as well, like dry mouth, night sweats, thirst, dizziness, ringing in the ears. It might also be a subtle deficit you won’t notice so you don’t get the symptoms. After a few days your body is again capable of producing the right amount of this hormone and you feel good again.

Let’s hit back to your case now. You had orgasm, POIS started. Then at some point your body is producing too little of the hormone we’re talking about. You also then have started taking Fenugreek, which is also responsible for lowerering this hormone. Then you have an orgasm. The body starts producing this hormone again, however at this time your body is not producing an excess amount of this hormone, because it actually had a deficit remaining from your first orgasm (remember?). So you won’t reach the state of anxiety, fatigue etcetera.

I have not had any tests done yet. They need to be done before POIS, a short while after orgasm and then repeated. The hormone I think it is, is cortisol. In Traditional Chinese Medicin terms: I think your body is too much kidney yang first, too much kidney yin then and then if possible returns to equilibrium. Please search these terms on the internet and look at the symptoms associated.

I wanted to do the tests  and then report on this forum, but then I read your story and felt I had to give it out now. This theory is also supported by my experience with multiple orgasms and with herbs I have been taken to boost and to lower cortisol. Remember it’s just a theory, everyone’s POIS might be different and everyone has the right to his/her opinion. I will also get the Girlwind’s  thyroid tests, ‘cos after all these years this part might be affected as well.

I had this theory worked out during Christmas Holidays. I am not a merry-Christmas guy,
but I wish you all a very blessed 2009! Thank you.

[underwater]

Rock--
Our POIS symptoms are nearly identical: Anxiety--Overdrive/Hyper--Dry Mouth--Night Sweats--Thirst-- Dizziness--Ringing in Ears--I also get muscle tension and depression-
I agree that Cortisol may be responsible for the symptoms we share (elevated). I also think basic epinephrine may be involved. However, since my POIS symptoms are identical to my panic/anxiety symptoms, I logically consider that there may be a serious imblance (deficit) of inhibitory neurotransmitters that should come into play after orgasm, but don't. Like my anxiety, there may be a lack of serotonin, gaba, dopamine or some other neurotransmitter that fails to balance out the intensity of orgasm and the cascade of high energy and excitation that follows.

[Finally]

My current program of Herbs/enzymes has worked remarkably well in breaking up the "cement" and restoring muscle fleibility.  I am being as abstinent as possible to prevent any setbacks.  It seems as if by restoring the energy levels, the body begins to heal itself?   
I avoid Calcium supplements as the last time I took them I could barely stand up.

I know you took a lotof supplements at the same time. Do you have an idea which one was the best to achieve these results. It's great that you have some success !

Sorry for taking so long to get back to you on this.  Been quite busy

It seems that FenuGreek and Maca which I take 3x/day along with Garden of life Restore(FYI Ultra also works ) has the greatest effect on the CFS/Fibromyalgia symptoms. 
Yohimbe and Horney goat weed seem to be more of a secondary help in the formula.  Works good taken with fruit juice(berries Pomegranite etc)   
I also take about 50mg. od DHEA.  When I took it alone there wasn't a great effect. 

I haven't had an orgasm in 2 months. The physical desire goes down as long as there isn't too much stress to deal with.  Kind of keeping my mind on other things as much as possible.  Having good results and progress keeps positive mental energy.   

[underwater]

Demo--
Thanks for your report-- Glad you're basically fine--
Interesting that high prolactin may be treated with dopamine receptor agonists--
I've always wondered that if prolactin shoots up to high levels at orgasm (along with dopamine), does dopamine then take a quick, steep drop? And we don't recover for a few days. Maybe some POIS sufferes have prolactin/dopamine imbalances, other cortisol/dopamine imbalances, others basic epinephrine/serotonin imbalances, others defferent combinations? I wonder if a DRI could be taken? I believe I've read about them, like an SSRI---How does Levitra fit into this? Does it affect neurotransmitters? 

[SteveD]

Guthrie,

I get away , scott-free, 10-15% of the time. That was the most perplexing part of the disease , for me. Also for EM's there's an even higher percentage.

I realize that some people may get away scot-free a certain percentage of the time--I simply wanted to emphasize that it had never happened to me before, so I was trying to figure out what could have been the cause in this exceptional instance.

Guthrie,

No clue. Sometimes wish it were 100% since it would then be a black and white issue, for me. There is someone else on this blog site, I recall. who reports a 30% escape ratio as well.

[SteveD]

Guthrie, I'm curious. You're the first person I've heard mention a partner in the two weeks I've been posting. How does your partner respond to your illness?

Hey Steve--Guthrie's not the only one with a partner. There are a few married people on this forum, and I too have a long-term
partner. In my situation, I am very grateful to be with a truly compassionate male human, This is an ongoing negotiation, sometimes easier than others.

Girlwind,

Sounds like many of us are blessed with very loving, compassionate partners

[SteveD]

I've been married 30 years. POIS is just one issue in a lifetime of many issues.
It all works out okay. As Steve has so eloquently observed, there are many dimensions to this existence. My wife deals with it, thinks I'm a little nuts, which I am.

Underwater,

Thanks for the compliment. I, too, believe that it all works out...I like your humility and humor.

[SteveD]

I haven't had an orgasm in 2 months. The physical desire goes down as long as there isn't too much stress to deal with.  Kind of keeping my mind on other things as much as possible.  Having good results and progress keeps positive mental energy.   

Finally,

I haven't had an intentional orgasm in 20 months and I'm fine with that. I actually feel at peace, like when I gave up alcohol 20 years ago. I was really ready to 'let go'. No grief, just the simple joy of freedom. I , too,  find that I do have 'control' over my attitude and I choose to be positive , simply because I feel better when I do.

[SteveD]

It seems there is an interesting link between Iron metabolism and immunity, Pois and dopamine. I'm not sure, it is just a start of theory...

- Orgasm seems to cause autoimmune disorder for us (especially if flulike symptoms).
- Then it causes inflammation and increases IL-6.
 (Demo's physician friend thinks IL6 are linked to Pois)
- IL-6 increases hepcidin Here and here. 
- Hepcidin decreases iron levels (its job)
- Low Iron level decreases catecholamines metabolism (Iron is cofactor of tyrosine hydroxylase (th). Th regulates the metabolism of L-Tyrosine to Dopamine). B3 is a cofactor too.

I'm convinced we can reduce IL-6 with good diet. I think to iron because Guthrie's link gives me this idea of "post-orgasm anemia" and because i said you I wait infos from another case. He has possible deletion of flulike symptoms with iron supplement. Everybody must check his iron level. But it's not enough because there are a lot of biological factors linked to iron. We talked with SteveD and he said he had Pois even when his iron level was good. But i remember even a low-limit level of iron can have effect on Dopamine (restless legs syndrome for example). Another problem is the role of iron on immunity. It seems to be a very complex problem because iron can be anti-inflammatory or pro-inflammatory, depending its form or its association with other molecules. Excessive iron can increase problems and be dangerous for body : No self-medication with iron! only doctors choose to try supplement or not . When Iron is "free" it might be used in pro-inflammation reaction too. Maybe the solution is to improve the absorption of iron instead of iron supplement. Lactoferrin can do the job .
And why not heal the autimmune disorder itself  ?  
Beside anti-inflammatory properties, LF was found to inhibit some autoimmune disorders.
It seems safe but i prefer to have opinion of the doctor.

Jim,

I'm iron anemic, at the moment, and taking iron supplements for the last 22 days but am not experiencing POIS symptoms.I'm not being orgasmic now. When my iron levels were good, and I was orgasmic , I experienced the symptoms. This is a very frustrating illness.

At my doctor's and acupuncturist's okay I have experimented with Relora and Fenugreek recently. I don't know how physically impactful POIS is to most everyone on the blog site, but I know that, for me, there is no way these supplements are strong enough to counteract the sheer, massive, physical force of the loss of neurochemicals from my brain brought on by simple orgasm.

[Guthrie]

Thanks for your post Guthrie. I have a working hypothesis that actually your experience supports.

Rock27, your hypothesis sounds quite plausible.  After reading your hypothesis, I was struck by an idea which is similar to yours, but perhaps a little different.

In a normal (i.e. non-POIS) person, it could be that a certain hormone rises after orgasm from its baseline state, and then shortly thereafter returns to baseline.  This person experiences no negative symptoms in connection with orgasm. 

 [ Invalid Attachment ]

Diagram 1: Normal person.   The arrow marked “R” represents orgasm, at which point the hormone rises from its baseline value (the zero-mark on this graph) to a peak (3 on this graph) and then back to baseline.


In a person with POIS, when orgasm occurs, too much of the hormone is produced, so that its level rises too high.  In compensation, when it falls again, instead of falling back to the baseline, it falls below the baseline.  It then takes a long time to rise again to the baseline value.  During the time that it is below the baseline, the person experiences POIS.


 [ Invalid Attachment ]

Diagram 2: POIS individual in red (with normal individual in blue).   The arrow marked “R” represents orgasm, at which point the hormone rises from its baseline value, not to the normal peak (3 on this graph) to a higher peak (6 on this graph).  Consequently, it drops below the baseline (-3 on this graph), and then gradually rises again.  While it is below baseline, the individual suffers POIS symptoms, whereas the normal person never falls below baseline, and so feels fine.



 [ Invalid Attachment ]

Diagram 3: Given this structure, one could account for the relief I mysteriously experienced after the second orgasm as follows: After the first orgasm (R1 on the graph), the hormone is over-produced and rises too high, then falls below baseline, causing POIS.  After the second orgasm (R2 on the graph), the POIS-person still produces an excess of the hormone.   That is, on the scale of these graphs, the hormone level rises by 6 (as opposed to a rise of 3 in a normal person).  However, because now the hormone level is starting from the POIS-level of -3, as opposed to the baseline level of the zero-line, the rise of 6 puts the hormone at a peak of 3.  But, this is equivalent to the peak level for a normal person’s orgasm.  Because, in the second orgasm, the hormone never hits the usual "too high" level, the compensation factor does not occur, so that the level can simply return to the baseline level, and no POIS-symptoms are produced.

I think this is pretty similar to Rock27’s theory.  One thing about the my hypothesis, though, it is that it allows for the possibility that the second orgasm is still overproducing the hormone—the ‘relief’ comes from the fact that starting point is different, so that the same excessive amount of rise results in a different high-point.

Incidentally, the graphs on these pages are somewhat similar, but (unsurprisingly) don’t have a double-orgasm graph:
http://www.uphs.upenn.edu/addiction/berman/neuro/dopamine.html
http://www.reuniting.info/science/sex_and_addiction


In general, it could be the case that POIS is a compensation mechanism to an over-production.  If other agents (e.g. fenugreek, relora) could keep the post-orgasm peak-level within normal bounds, they could also prevent the reaction-compensation from occurring.

[demografx]

Demo, I'm glad to hear there is no tumor! Hopefully the "partially empty sella" finding will lead to some possibilities for you.

Empty Sella Syndrome

John, many thanks for the well-wishing and..the interesting link! Next endo visit/labwork is 1/13.

And sometimes, I feel like I have Empty Brain Syndrome....

[demografx]

...the sheer, massive, physical force of the loss of neurochemicals from my brain brought on by simple orgasm.

I like that powerful statement about POIS. It does make one wonder whether the benign fenugreek or relora is up to the job for the majority of cases! In my Levitra experiments, it does feel like that drug is strong enough...scarily so! (e.g., some people have had vision loss from Levitra)

[demografx]

In a normal (i.e. non-POIS) person, it could be that a certain hormone rises after orgasm from its baseline state, and then shortly thereafter returns to baseline.  This person experiences no negative symptoms in connection with orgasm...

Guthrie, very interesting theory and visuals to understand it better!

[demografx]

DR, WALDINGER'S POIS PAPER 2002 AVAILABLE

Just a reminder that the PDF of this classic (and only study ever) of POIS is available from "Pyropeach". Just send him a Private Message with your email address.

Thanks again, Pyro!

[SteveD]

It was through nocturnal emissions I realized that I was having physical loss (semen) with absolutely no physical contact (manual, oral, penile/vaginal sexuality). This concretized, for me, the connection between the brain and semen. While some people experience a greater sense of connectedness, warmth, emotional safety and physical closeness upon orgasm, I am, if I am honest with myself, not one of them. This is why the Hindu-esque or Taoist-esque expositions around semen retention always, sort of, appealed to me, but even that explanation was insufficient. While I don't experience 'flu-like symptoms' there is an 'allergic' quality, upon orgasm, extremely similar, identical actually, to what the alcoholics describe in their literature as 'hangovers'. The 'allergy' I feel on the one extreme, compared to the magic I feel from 'semen retention' make this a slam dunk, for me.

[girlwind]

While some people experience a greater sense of connectedness, warmth, emotional safety and physical closeness upon orgasm, I am, if
I am honest with myself, not one of them. This is why the Hindu-esque or Taoist-esque expositions around semen retention always, sort
of, appealed to me, but even that explanation was insufficient. While I don't experience 'flu-like symptoms' there is an 'allergic' quality,
upon orgasm, extremely similar, identical actually, to what the alcoholics describe in their literature as 'hangovers'. The 'allergy' I feel on
the one extreme, compared to the magic I feel from 'semen retention' make this a slam dunk, for me.

I also do not feel a greater sense of emotional connectednesss upon orgasm. ESPECIALLY because of that "hangover aspect"
that is the unfortunate result of orgasm, due to POIS. But even before I had POIS symptoms, the orgasm just wasn't the end
all and be all for me. The closeness that I feel usually comes more from cuddling and affectionate foreplay, and even intimate
and soulful conversations shared in bed. (I thought this was a "female thing.") The orgasm can be a nice stress releaser, pro-
vided you're not totally wasted afterwards, but with POIS why bother taking that risk.