Post Orgasmic Illness Syndrome (POIS)

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5500 on: 07/09/2009 13:14:46 »
Hey, I'm back (sort of).  Just have time for a short post.... I haven't had time to read everything that's gone on in the last few weeks but...
- GoingCrazy seems to be describing the 'subsequent orgasm' effect I've noted
- I am quite sure that I have (severe?) reactive hypoglycemia, and I think there is a strong connection with my POIS.  I was travelling with a physician friend, and I realized, more clearly than I had before, that whenever I eat any food with a moderately high glycemic index, I get really hungry (unless I have a LOT of it, in which case I just feel strange).  I also get a mild headache, and have trouble concentrating.  This is alleviated by having something like cheese.  This connects alot of the POIS dots in my case (feeling weird after caffeine, alcohol, certain foods, high sugars, etc).  I described my symptoms to the physician friend who had been observing me, and he suggested that I have hypoglycemia; he was quit ecertain of it.  (Hypoglycemia not hyperglycemia).

Hypoglycemia, it seems, can often be a side effect of a different problem.... and it can also sometimes be hard to test for.  The most standard test in the US is the 4 hour glucose tolerance test, and it is probably the test I will try first. 
« Last Edit: 07/09/2009 13:48:51 by Counterpoints »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5501 on: 07/09/2009 15:24:53 »
that is confusing if you are hypoglycemic, shouldnt that mean glycemic foods to help you, or those hypoglycemia mean inabillity to digest glucose or break it down.

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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5502 on: 07/09/2009 16:03:04 »
that is confusing if you are hypoglycemic, shouldnt that mean glycemic foods to help you, or those hypoglycemia mean inabillity to digest glucose or break it down.

This may be related to something called 'dumping syndrome' also.

Basically, if I eat something with a high glycemic index, my body overcompensates by producing too much insulin.  This drives my blood sugar way down.  The process of my blood sugar shooting down would cause me to have bad symptoms (at least as much as low blood sugar itself). 

So, for example, if I am hungry, and I eat some creme brulee, I'll get REALLY hungry, and a mild headache, and have difficulty focusing.  In order to feel better, I'll have to have a cheese sandwich or something like that.

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5503 on: 07/09/2009 20:04:40 »
As BJim commented, pure cran really impacts blood sugar. I've tested for several weeks now. It feels like regulation of card sensativity.

I'm waiting for the next NE. I've been on the juice for 3 weeks :)

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5504 on: 07/09/2009 21:15:49 »
As BJim commented, pure cran really impacts blood sugar. I've tested for several weeks now. It feels like regulation of card sensativity.

I'm waiting for the next NE. I've been on the juice for 3 weeks :)

good luck, what brand of cranberry juice are you drinking?
« Last Edit: 07/09/2009 21:21:18 by goingcrazy »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5505 on: 07/09/2009 21:22:46 »
I think its about time for me to join the NE group, it's just so hard for me to wait that long.

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5506 on: 07/09/2009 22:35:08 »
L&A

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5507 on: 08/09/2009 18:41:26 »
After a carb rich meal I feel glycemic symptoms. If I drink cran thoughs symptoms reduce wihin 30 minutes.

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Offline demografx

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5509 on: 09/09/2009 03:53:24 »

I've been on the juice for 3 weeks :)


LJ, have you tried Cranberries Anonymous? [:)]

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5510 on: 09/09/2009 03:59:06 »
Drunk on cranberry?

Now I've heard it all. They make cranberry cocktails with all types of liquor/liqueur...and even cranberry and beer!
http://www.in-the-spirit.co.uk/cranberry_cocktails.html

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Offline THISFORUMROCKS!

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5511 on: 09/09/2009 04:56:56 »
Cranberrry liqueur? Good find demografx  [O8)]

These connections to glycemia look very interesting, but as far as Chi goes I'm not convinced till I see a good argument for it.

Is anyone looking into taking a prescription antimicrobial after/around POIS?

I'm seeing a strong connection between Relora/Fenugreek/Garlic/Cranberry. I think that they all have antimicrobial properties. More to come...

 

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Offline THISFORUMROCKS!

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5512 on: 09/09/2009 05:55:58 »
So I was reading about Encephalitis on the merck site and found the article very informative. I hope some people take time to read it with an open mind and see if you make the same connections below that I see.

http://www.merck.com/mmpe/sec16/ch217/ch217c.html

Some things that caught my attention from this article regarding Encephalitis:

-RELATED FEVER/HEADACHE/ALTERED MENTAL STATUS "often accompanied by seizures and focal neurologic DEFICITS"
-inflammation of the parenchyma of the brain
-related spinal cord inflamation
-a preceding GI symptom
-"Encephalitis is suspected in patients with unexplained alterations in mental status."
- "CSF abnormalities may not develop until 8 to 24 h after onset of symptoms." A delayed onset of symptoms possibly related to back pain?
-"Hemorrhagic necrosis can introduce many RBCs and some neutrophils into CSF, elevate protein, and modestly lower glucose."
-diagnostic testing techniques for encephalitis related conditions
-An ANTIMICROBIAL drug is mentioned as a possibility for treatment(they are probably trying to sell it).


And here is the real kicker! Right at the end of the article after supportive therapy like proper hydration is listed: "Euvolemia should be maintained." Or, the presence of the proper amount of blood in the body. Could the big "O" somehow release/trigger microbes/activating a dormant virus like chicken pox(but something else of course) with subsequent autoimmune reaction at a point when the immune system is especially weak. Could the "O" simulate euvolemia by a change in blood pressure or a reallocation of blood supply away from certain areas like the brain and into certain other places like the prostate etc and end up being a trigger for the whole POIS reaction? Or why is maintaining euvolemia important? Maybe I'm way off base; what do you think? I'm really interested to know what others think about this...Thanks in advance for your consideration!



   
« Last Edit: 09/09/2009 17:04:32 by THISFORUMROCKS! »

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5513 on: 09/09/2009 06:15:30 »
Cranberrry liqueur? Good find demografx  [O8)]

These connections to glycemia look very interesting, but as far as Chi goes I'm not convinced till I see a good argument for it.

Is anyone looking into taking a prescription antimicrobial after/around POIS?

I'm seeing a strong connection between Relora/Fenugreek/Garlic/Cranberry. I think that they all have antimicrobial properties. More to come...

 

Do I sense another emerging theory for the compendium??


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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5514 on: 09/09/2009 15:00:07 »
Has anyone else had their blood tests done for any type of virus, lyme disease, etc?

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Offline pauliebaby61

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5515 on: 09/09/2009 16:50:46 »
I have had this problem for at least 10 years, and its always the same. After orgasm, the fatigue starts and is followed by phy and emotional weakness and just feeling so horrible that it makes sex a negative experience. It takes about a week before i feel like a normal person again. UGH i hate it so much!
My wife is great about it, and basically i never have orgasms unless i cant take it anymore[ 1x every 2-4 months]
I take care of her needs and have lots of foreplay but wont climax because its just not worth feeling this bad.

I have had lyme disease and was treated via i.v for 1 1/2 yrs and they say i dont have it now. I am on injectable testosterone, prednisone, and an estrogen blocker.
I was Very interested when 'goingcrazy' said he took benadryl and felt no symtoms. Can you please ELBORATE on that? The testicles release hisamine at orgasm, and benadryl is a hisamine blocker.
I need some help, its so hard living with this problem........thx
« Last Edit: 10/09/2009 05:13:19 by demografx »

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Offline THISFORUMROCKS!

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5516 on: 09/09/2009 17:25:40 »
Has anyone else had their blood tests done for any type of virus, lyme disease, etc?

I was tested for lyme, result negative- I'm not sure I agree with the result of the single test by a local lab... There are very few good lyme specialists and clinics that do thorough, knowledgeable, proper testing for lime. There are several lyme tests, some more accurate than others, with a high incidence of false negative results. There is strong evidence for chronic lyme which some doctors do not believe in or choose to ignore.

The most informative site I have found regarding lyme is from the Columbia University Medical Center, NY. I figure this could be relevant as one of many potential underlying facilitators/drivers of pois.

http://www.columbia-lyme.org/
« Last Edit: 09/09/2009 17:30:23 by THISFORUMROCKS! »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5517 on: 09/09/2009 17:28:35 »
Benadryl made me calm and relaxed.  But I was also drinking cranberry juice around the same time.  I really do not know right now.  I'm about to take another benadryl just to see because right now I am definitely POIS'ing.  I orgasmed about 5 times this weekend (haha went crazy) and felt no symptoms, but now they are definitely catching up with me.  I feel very very bad.  I'm going to a behavioral therapist in a few days.  All I can say is orgasm-ing more than once is definitely a LOT worse...  I'm going to take some benadryl right now and see what happens.

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Offline pauliebaby61

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5518 on: 09/09/2009 17:56:17 »
thx going crazy. You seem to be in better shape than me...there is no way i could have 5 O's in a weekend without being bedridden for probably 6mo. I agree, more orgasms or O's too close together is really bad.
Hope you feel better and the benadryl works! I wonder if if matters if you take it even after orgasm?
Keep us posted.

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5519 on: 09/09/2009 17:56:49 »
John21, have you orgasmed without NE to see if you are cured?  You don't have to if your really not ready I don't want to stunt your progress.  I'm really thinking long term celibacy is the key.  Maybe our brain chemicals are imbalanced and doing this leads to this type of reaction.  I was reading and it said it takes about 6-12 months to fully balance brain chemicals, and an out of balance brain seeks for short thrills that pay badly in the long term (orgasm).  If one thing helps us, it sure is staying away from orgasm.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5520 on: 09/09/2009 18:04:33 »
Interesting new book

Marnia Robinson, aka "reuniting" has been a POIS Forum member for quite some time and has contributed quite a bit to us. She and her husband are world-class experts in sexual relationships. Her new book looks like it might give us some more insight into POIS:
http://www.reuniting.info/cupids_poisoned_arrow


                        
« Last Edit: 10/09/2009 04:56:29 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5521 on: 09/09/2009 18:19:19 »

In our discussion of "reuniting"'s new book, she wrote: "One bit of research we put in our latest book is that androgen (nerve cell) receptors decline in male rats after copulation...and more so the more times they copulate. (Their pattern is 7-8 copulations before they lose interest in *that* mate.) Androgen receptors are what react to testosterone. So even if testosterone is circulating, the animal is not feeling as "manly." See how sneaky biology is? "The more (or more intense) the merrier" doesn't necessarily apply if you take into account the days following."

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5522 on: 09/09/2009 19:00:08 »

John21, have you orgasmed without NE to see if you are cured?  You don't have to if your really not ready I don't want to stunt your progress.  I'm really thinking long term celibacy is the key.  Maybe our brain chemicals are imbalanced and doing this leads to this type of reaction.  I was reading and it said it takes about 6-12 months to fully balance brain chemicals, and an out of balance brain seeks for short thrills that pay badly in the long term (orgasm).  If one thing helps us, it sure is staying away from orgasm.


I agree. But personally, I have simply been unable to pull it off (no pun intended)in 30+ years of trying. 60 days max. And then POIS is just as bad, and often much worse.
« Last Edit: 09/09/2009 19:02:03 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5523 on: 09/09/2009 19:08:00 »

In our discussion of "reuniting"'s new book, she wrote: "One bit of research we put in our latest book is that androgen (nerve cell) receptors decline in male rats after copulation...and more so the more times they copulate. (Their pattern is 7-8 copulations before they lose interest in *that* mate.) Androgen receptors are what react to testosterone. So even if testosterone is circulating, the animal is not feeling as "manly." See how sneaky biology is? "The more (or more intense) the merrier" doesn't necessarily apply if you take into account the days following."


For people like me with POIS, I wonder if this ties in to my theory of more POIS-relief when: (1) I increase my testosterone when POIS begins, and (2) I increase testosterone treatment to higher than average levels 24/7.

My endo has approved both. Let's see what happens.

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5524 on: 09/09/2009 19:58:37 »
i have been keeping up with the post since i first found it, and i have seen some good ideas come about. but i think these are all secondary illness's caused by a primary problem which is most likely the theory about hormones.  from peoples endocrine test, it appears that all the levels are pretty much with in normal range.  this suggests that we have normal homeostasis of hormones but, one is an antigen(antagonist of the body) in are body and is causing massive havoc. the best method i can think of is to test the hormones released after orgasm one at a time.  if one of the hormones causes pois, than we have found the problem and can start to solve it. that's if a doctor lets someone experiment with hormones.manually putting the "poison" in our body will give us concrete evidence if one causes pois.  this will be just like a allergy test, where they ***** your back with a possible allergen, and then wait for a reaction.

also, to the people who test the various methods of pois cures, by having 5 o's in a row, i applaud you.  5 o's in a row would most likely send me into shock, i would be airlifted to Harborview Hospital, where i would most certainly die a most torturous death.

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5525 on: 09/09/2009 20:01:45 »
the part that say's ***** is poke

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Offline THISFORUMROCKS!

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5526 on: 09/09/2009 21:14:43 »
Good eye pyropeach; my new theory for the compendium has emerged and here it is:

POIS is a form of Encephalitis or Encephalomyelitis. It is only the cause of what triggers this form of Encephalitis or Encephalomyelitis that differentiates it from other more common or recognized forms of this problem.


P.S. Any efforts to debunk or applaud this theory are welcomed

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5527 on: 09/09/2009 21:22:50 »
why does orgasm trigger the symptoms Encephalitis

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5528 on: 09/09/2009 21:42:22 »
i guess a immune response from an antigen released during orgasm could cause inflammation of the brain(Encephalitis)
 

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5529 on: 09/09/2009 22:46:56 »
GC
Quote
John21, have you orgasmed without NE to see if you are cured?

Due to my faith I became chaste in obedience to the Catholic Church. My chastity could be contributing to my lack of symptoms post-NE, but I am not convinced of that. I have been (normally) chaste for a few years now during which I have definitely experienced POIS following both NE and O, but whether time has recently made things well remains to be seen. I too would like to have more insight into my current condition but I am reluctant to go there. I have confessed masturbation enough already. [:D]

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5530 on: 09/09/2009 23:07:35 »
Good eye pyropeach; my new theory for the compendium has emerged and here it is:

POIS is a form of Encephalitis or Encephalomyelitis. It is only the cause of what triggers this form of Encephalitis or Encephalomyelitis that differentiates it from other more common or recognized forms of this problem.


P.S. Any efforts to debunk or applaud this theory are welcomed

I think we really just need some thorough scientific research done, we can go on theorizing for eons.  I think I have been just digging myself a deeper hole self-diagnosing myself.  I read about encephalitis and it says symptoms may last about 2-3 weeks.  It also says symptoms such as fever and/or paralysis, which I don't have.  Have you been tested for Encephalitis?

also, to the people who test the various methods of pois cures, by having 5 o's in a row, i applaud you.  5 o's in a row would most likely send me into shock, i would be airlifted to Harborview Hospital, where i would most certainly die a most torturous death.

Haha, well those 5 O's did come at a price.  I'm dealing with the late POIS right now.  Weird how my symptoms were delayed a few days.
« Last Edit: 09/09/2009 23:10:45 by goingcrazy »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5531 on: 09/09/2009 23:14:56 »

John21, have you orgasmed without NE to see if you are cured?  You don't have to if your really not ready I don't want to stunt your progress.  I'm really thinking long term celibacy is the key.  Maybe our brain chemicals are imbalanced and doing this leads to this type of reaction.  I was reading and it said it takes about 6-12 months to fully balance brain chemicals, and an out of balance brain seeks for short thrills that pay badly in the long term (orgasm).  If one thing helps us, it sure is staying away from orgasm.


I agree. But personally, I have simply been unable to pull it off (no pun intended)in 30+ years of trying. 60 days max. And then POIS is just as bad, and often much worse.

POIS tends to be better after I wait at least 2 weeks, than I can handle about 1 orgasm.  I'm strictly only O'ing on NE's now.  But my current theory is that my body is in down-production of neurotransmitters, making me feel terrible after orgasm and having to replace these neurotransmitters is just a hassle for it.  30+ years does make me feel skeptical of this idea but maybe its either that idea or we need to rewire our brains by exercise, eating healthy, etc.  Maybe one day all will be fine.

http://evenstaronline.com/articles/top10brainop.html


# 10 is interesting

"When the baseline brain chemistry changes you are less subject to day to day drastic swings." <-- 6-12 months, day to day drastic swings meaning orgasm?
« Last Edit: 10/09/2009 02:05:35 by goingcrazy »

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5532 on: 10/09/2009 05:14:02 »
As a child I has encephilitus.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5533 on: 10/09/2009 05:27:00 »

30+ years does make me feel skeptical of this idea [of celibacy]


GC, that's just me and my body chemistry. Maybe others are different. SteveD claimed he was celibate for 18 years. And I think John has been successful over long periods.

One of our forum members PM'ed me and wrote that my problem is...being a musician. Too much passion...who knows? [:)]

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Offline Taz

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5534 on: 10/09/2009 06:20:01 »
Hi I'm new, I was very interested in testing specific hormones one at a time after O'ing. How do I go about organising this? Thanks Lauracostis your approach is narrowing down the variables, this is what is really needed.
I've just started my cranberry trial and I think it has some real positive effects. After O'ing in the weekend I have taken cranberry juice, cranberry pills, cranberry's and a men's multi every day. I have felt confidence, semi social, alert similar to coffee without bad sleep side effects. I still had a very bad head ache and still felt some dizziness how ever not as bad as normal. I'm also feeling very calm which is very different to my high anxiety after POIS. For me I normally am very angry and frustrated because I just cant function effectively after POIS how ever I'm now calm and very rational. I have no understanding of the science behind POIS but cranberry's seem to be positive.    

Quote Lauracostis

i have been keeping up with the post since i first found it, and i have seen some good ideas come about. but i think these are all secondary illness's caused by a primary problem which is most likely the theory about hormones.  from peoples endocrine test, it appears that all the levels are pretty much with in normal range.  this suggests that we have normal homeostasis of hormones but, one is an antigen(antagonist of the body) in are body and is causing massive havoc. the best method i can think of is to test the hormones released after orgasm one at a time.  if one of the hormones causes pois, than we have found the problem and can start to solve it. that's if a doctor lets someone experiment with hormones.manually putting the "poison" in our body will give us concrete evidence if one causes pois.  this will be just like a allergy test, where they ***** your back with a possible allergen, and then wait for a reaction[/i][/i][/i]n.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5535 on: 10/09/2009 06:25:44 »

pauliebaby61 and Taz, 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:
http://www.youtube.com/watch?v=UWBxAUC9k1g

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 150 POIS sufferers worldwide who have posted here, plus more than 350,000 page visits. Not bad for a rare malady!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5536 on: 10/09/2009 06:27:02 »

pauliebaby61 and Taz, this post might 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#.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5537 on: 10/09/2009 06:41:00 »


From peoples endocrine test, it appears that all the levels are pretty much with in normal range.  this suggests that we have normal homeostasis of hormones but, one is an antigen(antagonist of the body) in are body and is causing massive havoc.


My "T" was not in normal range. Endocrine tests showed low testosterone levels, so my endo put me on TRT (daily 15mg patches).

Over eight months into treatment, I now have 75% to 90% relief of POIS symptoms per episode.
« Last Edit: 10/09/2009 08:02:29 by demografx »

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Offline pauliebaby61

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5538 on: 10/09/2009 14:32:46 »
Testosterone does not help my pois. im on shots 2x a wk and my level is 789 but still have the symptoms after orgasms. I also take an estradoil blocker now, becuase T converts rapidly into estrogen. my level was 105 a year ago, so i assumed thats why i felt so bad after orgasm. It wasnt the answer. Im a 47 yr old male.
« Last Edit: 11/09/2009 01:56:27 by demografx »

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5539 on: 10/09/2009 14:45:36 »
The testicles release hisamine at orgasm

Where did you find this out?! Please let me know as it may lead to another theory and shed light on another piece to this puzzle.

As for the Encephalitis thing...it seems more raw data is needed before we could declare it another one of our theories.


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Offline pauliebaby61

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5540 on: 10/09/2009 16:27:23 »
My lyme dr, [Dr. Domminck Braccia, D.O. from Haverford, Pa. ph # 610-924-0600] was trying to help me with this'fatigue after orgasm' problem [thats what i called it] and told me he felt it could be neurotransmitter related, because the body releases hisamine at orgasm.  You can google it and will find this to be accurate. He ordered several neurotransmitter tests, via stool sample from Doctors Data. The results did show some deficiencies, most being Dopamine and seratonin.
My dr has put me on 5HTP[ precurser that makes Dopamine and seratonin  to see if it helps. So far, no difference, but his idea is worth exploring. It could be the release confuses the brain, and instead of sex being a good experience, it shuts down function and makes it a very negative one. Sounds like a nuerotransmitter imbalance of some kind to me. Ive been trying to figure this out on my own for 10yrs, because all the doctors look at me like im nuts, and tell me they never heard of this.
This is why i asked 'goingcrazy' about him feeling good after taking benadryl. If this is true, perhaps the benadryl[or any anti-histamine] blocks the hisamine from confusing the brain???
For years, I assumed this was an adrenal problem, due to low function, because adrenal insuffiency has very similar symptoms, but i have been on hydrocortisone for 10 yrs and prednisone for a month and it does NOT help this issue. Also have been on thyroid to no avail. Ativan helps the anxiety greatly.
I had undiagnosed Lyme for 25yrs before i got treatment, so it could be in my case the lyme has really screwed up my body, because my hormones are so wacked out....

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5541 on: 10/09/2009 18:58:47 »
The histamine release is a very good starting point to explain Pois.

I tried it (benadryl) yesterday in POIS and it had no effect, maybe if you take it beforehand it might do something.

Benadryl prevents release of histamine but doesn't effect it if its already there?

I had undiagnosed Lyme for 25yrs before i got treatment, so it could be in my case the lyme has really screwed up my body, because my hormones are so wacked out....

How do you manage to find that it was in your body for 25 years?
« Last Edit: 10/09/2009 19:04:59 by goingcrazy »

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Offline pauliebaby61

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5542 on: 10/09/2009 18:59:55 »
just re-looked at my neuro-tests from 4 months ago, and my histamine was high....mmmmm   ...and when the test was done, i hadnt had an orgasm for a long time. could it be orgasm and the release of histamine sends the level so high it is screwing with my brain.....?

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5543 on: 10/09/2009 19:03:30 »
Weird, I find the more I have POIS, the more I am on this website.  What's good news is I definitely feel at least twice as better than last year before finding this site,  I feel POIS is greatly reduced in pain and time, especially just after one "O" which may last about 2 days for me, especially after an NE which tends to be less harmful than a normal "O".  Once you've hit rock bottom there is nowhere to go but up, so I keep on telling myself it's always going to get better and better.

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Offline pauliebaby61

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5544 on: 10/09/2009 19:05:52 »
The lyme was found by a PCR[dna] test, and i was treated based upon that and symptoms. Chronic lyme many times doesnt show up in blood tests, and western blot test isnt reliable.
I was treated with I.V. roecephin, about 150 treatments. My health has improved, but the pois stuff never has gone away.
I am determined to solve this puzzle....

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5545 on: 10/09/2009 19:13:47 »

I am determined to solve this puzzle....

I always think if we can get ourselves into this, we can get ourselves out.  I think if I exercise every other day, and stay away from the downstairs, I can make great progress.  I remember back in the day when I used to "O", but I used to feel tiredness instead of anxiety, it gradually came on... Now I think I can gradually make it go off.  Hopefully, I just need to fully stay away for at least a year.

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Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5546 on: 11/09/2009 00:20:46 »

Benadryl prevents release of histamine but doesn't effect it if its already there?


Just to be clear here, antihistamines do not prevent the release of histamine, but rather block the histamine receptor sites.  This is why antihistamines work best when taken a few hours before exposure to allergens so it has a chance to bind to the histamine receptor sites before histamine binds. 

The histamine release is a very good starting point to explain Pois.

Yes, I completely agree!!

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Offline THISFORUMROCKS!

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5547 on: 11/09/2009 01:37:21 »
The histamine release is a very good starting point to explain Pois.

I also agree.

So far it has been easy for me to assume that histamine release, possibly leading to excess could be a problem. Along these lines, a diet low in histamines/histidine could be investigated on the intake side of the equation while factors that inhibit Diamine Oxidase (histamine breakdown) could be investigated on the other side. Apparently an unhealthy digestive tract can lead to high levels of bacteria produced histamine from the histidine in food.  

Conversely, after reading about the positive attributes of L-Histadine and histamines produced from it, I am also seriously considering if a lack of these substances could be a problem in our case; potentially caused by a bad immune reaction to them or by their lack of metabolization/utilization, or histamine receptor site issues for example. Maybe histamine does not have to be only helpful OR harmful in POIS cases but could be both depending on which processes are considered.

Notably cheese and therefore CHEESE SANDWICHES :) tend to be a food high in histamines which could explain why one furum member likes cheese sandwiches..

Here is one interesting article relating to food and histamines.

http://whfoods.org/genpage.php?tname=dailytip&dbid=246

 
« Last Edit: 11/09/2009 01:41:54 by THISFORUMROCKS! »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5548 on: 11/09/2009 01:53:28 »

My lyme dr, [Dr. Domminck Braccia, D.O. from Haverford, Pa. ph # 610-924-0600]


That was very generous of you! Thank you for sharing the contact info!


Ive been trying to figure this out on my own for 10yrs, because all the doctors look at me like im nuts, and tell me they never heard of this.


If it's any consolation, I've been grappling with the same thing for 30+ years (could be 40+, but like most people here, I just didn't connect POIS symptoms to sex for a long time).

Doctors without a clue (and blaming us) - what a rude awakening THAT was!!!

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5549 on: 11/09/2009 03:31:45 »
I've been changing theories A LOT over the past few months and I would just like to know what people think about hormones being the cause of this... could it really create all of this mental confusion and mood?  Weird how something your body makes could be so detrimental for you.

When I POIS I feel like the first few seconds after orgasm is fine, then suddenly it's like almost too much is released, I get a very tense feeling in the back of my head.  Than POIS follows...

My new theory is the overactive gland theory

and... I posted the question on yahoo answers and somebody said it is because my brain grey matter is low?  Really?? [???]