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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6448180 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5250 on: 11/08/2009 05:56:18 »

JonJen99 : Welcome, thanks for rodiola rosea.
Are you a Pois sufferer :) ?
Can you give more details ?


Jim, I've lurked here for some time. I don't feel comfortable discussing my condition, but yes -- I've had pois since college, and that was MANY years ago. I've had some relief from pharma, but mostly from herbs.


Can you say which herbs?
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5251 on: 11/08/2009 06:33:59 »
the last entry had to do with active transport and diffusion facilitated ions between the cell membrains which is similar to the hyperpolarization of axon membrains in neurons.  the two previous posts before that had to do with: gonadocorticoid steroids converting to neurosteroids, which act on gaba a receptors which cause benzo like effects such as tiredness, sleepyness, impaired cognition, weekness.
the hyperpolarization of neurons prevents signals from reaching axon terminals and releasing neurotransmiters like dopamine in to synapse.  for this reason it is likly why antidepressents do not work well for people suffering from syndroms like fibromyalgia and pois, it seems likely to me that the cause preceedes neurotransmiters release, and that low amounts of neurotramiters are a secondary outcome.

sorry demografx if i dont make any sence.  just trying to throw some ideas around to people with medical or biochem backgrounds.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5252 on: 11/08/2009 20:03:10 »

Laurac, if not neurotransmitter release, do you have an idea what might be more primary in POIS? (I don't know if fibromyalgia has any parallel to POIS).
 

Offline JonJen99

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5253 on: 11/08/2009 21:37:09 »

JonJen99 : Welcome, thanks for rodiola rosea.
Are you a Pois sufferer :) ?
Can you give more details ?


Jim, I've lurked here for some time. I don't feel comfortable discussing my condition, but yes -- I've had pois since college, and that was MANY years ago. I've had some relief from pharma, but mostly from herbs.


Can you say which herbs?

Hi, I've already mentioned that Rhodiola has been very important to me. Two other herbs that I've found that have successfully worked on my energy issues are Eleutherococcus and Schizandra. One is a root from Siberia and the other a berry. They were first given to me by a Naturopath when discussing POIS, in a formula where they were combined. I found them invigorating, but not stimulating. I don't do well with caffeine, but I can handle these. Still, the Rhodiola is my favorite. Once again, I used the higher priced products, typically from Verde Botanica, because I keep finding that the cheaper varieties all come from China and don't seem to do much. - J.
 

Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5254 on: 11/08/2009 23:19:41 »
demografx, besides severe muscle pains, the core symptoms are: "debilitating fatigue, sleep disturbance, and joint stiffness. Some patients may also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling (paresthesia), and cognitive dysfunction".  patientes who have no symptems of muscles pains are often thrown into the broad category of fibromyalgia because of the wide variety of symptems the syndrom encompases.  the symptems listed above in "" are copied and pasted with out any editing or manipulation from the discription of fibromyalgia symptoms   (http://en.wikipedia.org/wiki/Fibromyalgia).  these symptoms seem quite similar to those of pois sufferes.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5255 on: 12/08/2009 04:37:09 »

Thanks, JonJen, that was really helpful.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5256 on: 12/08/2009 04:44:47 »
laurac, but the genesis and/or triggers for POIS vs. fibromyalgia are different, aren't they? And the length of time in/out of the system (typically, POIS lasts a few days and then nonsymptomatic normalcy returns). Aren't fibromyalgia symptoms always there?

Or maybe orgasm, in some people, triggers a "temporary fibromyalgia"?

This discussion reminds me of my post about hypogonadism, i.e., is that what I have or POIS?
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg249794#msg249794
« Last Edit: 12/08/2009 19:47:09 by demografx »
 

Offline tazdas

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5257 on: 12/08/2009 08:03:39 »
To demografx

I was just trying to share information and no intention of spam or any product advertisement. That is why I said 'do our own research' and 'read' in my original post. I had reasonable results from one of his products so that's why I mentioned it in my post. Since every body's physiology is different so for some they may work and for some it wont..   

I still have my POIS issues so I am still doing research and that's how I landed up in this forum. To be honest I forgot to search this site thoroughly before posting and never realized Lin was discussed here...
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5258 on: 12/08/2009 19:32:56 »

To demografx

I was just trying to share information and no intention of spam or any product advertisement. That is why I said 'do our own research' and 'read' in my original post. I had reasonable results from one of his products so that's why I mentioned it in my post. Since every body's physiology is different so for some they may work and for some it wont..   

I still have my POIS issues so I am still doing research and that's how I landed up in this forum. To be honest I forgot to search this site thoroughly before posting and never realized Lin was discussed here...


tazdas, thank you for writing. I left the remainder of your post up because I realized that your actionlove.com recommendation was "borderline" as far as spam. First time posters who promote something and don't bother to first engage in some sort of dialogue or give-and-take are viewed suspiciously.

So, thank you very much for clarifying your post and I apologize for judging you too quickly. Please understand that many have been here before you, and the intent in jumping right into "the solution for POIS" was not always benign. Often, people come here and simply want to promote their own agenda and not engage in any form of discussion, which as you know, is not what a forum is all about. So, it's very hard to judge sometimes.


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




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

Our new POIS Information Website is here:
http://sites.google.com/site/poiswebsite/

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 350,000 page visits. Not bad for a rare malady!
« Last Edit: 12/08/2009 19:41:46 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5259 on: 12/08/2009 19:33:48 »
tazdas, this post might help you find information about POIS that we have already discussed, by tailoring a Google search to this POIS forum:


SEARCH POIS 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]site:http://www.thenakedscientists.com/

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

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

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5260 on: 12/08/2009 20:21:25 »
From a New Theories thread, today:
(Our POIS thread is also housed in Naked Science Forum's "New Theories" section)




I always had the impression that New Theories was not so much a place for New Theories, but more of a place to house the nutters and way out there people.


Hey, Paul, I wish to protest, "foul"! My little "nutter group and way out people" has been going strong for over 2 years now, and has attracted interest from Harvard (biophysics), and other dead-serious researchers and institutions (no, not that kind) worldwide. And it's helped a number of people with suicidal ideation, and depression, and has also given great hope to hundreds of sufferers that all the new theories discussed will some day become concrete treatment reality (it has for me already).

« Last Edit: 12/08/2009 20:51:21 by demografx »
 

paul.fr

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5261 on: 12/08/2009 23:26:11 »
Demo, with respect, you are barking up the wrong tree. My comment was said in jest, although there is truth in it.

Take a look around "new theories", how many of the posts are new theories? Not many, this is a dumping ground for the wackier topics and wackier posters. Most of them know it, but are happy to be able to post and be left alone.

At no point have I mentioned your pois topic, so an apology would be nice.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5262 on: 13/08/2009 01:43:07 »
Isn't POIS part of the New Theories "family" you dismiss, Paul? You made no distinction at all.


I always had the impression that New Theories was not so much a place for New Theories, but more of a place to house the nutters and way out there people.


The above still reads to me like a wholesale dismissal of New Theories, which includes POIS.

From your last post, however, it seems that it's not what you meant to convey, and I appreciate that.
« Last Edit: 13/08/2009 03:58:07 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5263 on: 13/08/2009 03:52:49 »
I think it's time to "downgrade" my TRT cure from 90% to 75%.

As I'm sure everyone knows, it's difficult to quantify improvement. I'm basing this on the fact that Day Zero is still troublesome, but Days 1 through 4 are almost POIS-free.

8 months' consistency is very encouraging. And I look forward to the day it's 100% !

For everyone!
« Last Edit: 13/08/2009 04:47:10 by demografx »
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5264 on: 13/08/2009 06:19:12 »
BJim
"don't remember you have this symptoms (Pois-Olympe is down now). Can you give more details ?
I'm reading your old posts... You have improvement with fenugreek and
Alpha20C. What about now ? Alpha20C, fenugreek and low sugar isn't enough to heal you"

I think i have mentioned it before that after eating my pois symptoms gets worse ( but those are big meals)Most of the food i eat are high in carbo but i just started working reducing and braking my meals down into several times a day.  I know these because i get fatigue and get that disturbing pois memory.

I also notice even after healing. When I dont sleep enough i feel pois memory kick in and some fatigue but not as bad as pois. But it was never like this, before when i dont sleep enough i get hyper.

I tried fenugreek and alpha 20 c again it didnt work. so i stoped.

what helped was relora and lots of chicken. It helped me by giving me more energy and got me more social but pois memory and cognition was in background.  but that only worked for two days. I stoped because i dont really trust relora and makes me to sleepy.

did low sugar help you

also when i took 5 hour energy during pois, it did nothing.   

and these are reason why i believe it is connected to adrenaling.
 

paul.fr

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5265 on: 13/08/2009 08:38:06 »
Demo, do you really want to continue this in the pois topic? Isn't it distracting from the point of the topic?
If anyone wishes to read what I wrote and any replies then they can easily click this link
http://www.thenakedscientists.com/forum/index.php?topic=24790.25

and scroll down to the bottom of the page.
I don't see a need to cross post or distract from the point and purpose of those posts.
 

Offline Finally

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5266 on: 13/08/2009 17:43:16 »
laurac, but the genesis and/or triggers for POIS vs. fibromyalgia are different, aren't they? And the length of time in/out of the system (typically, POIS lasts a few days and then nonsymptomatic normalcy returns). Aren't fibromyalgia symptoms always there?

Or maybe orgasm, in some people, triggers a "temporary fibromyalgia"?

This discussion reminds me of my post about hypogonadism, i.e., is that what I have or POIS?
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg249794#msg249794


I am not sure what the connection, but I have been diagnosed with Fibromyalgia  and the symptoms are brought on and elevated by orgasm.  Since I originally had some relief from salt(especially sea salt) I had thought the problem came from an imbalance( low on sodium). Blood tests did not indicate low sodium but it could invovle transport at the cellular level.
Someone mentioned heat and both POIs and fibro symptoms are worse during summer heat waves. My entire body can become paiful when I move.
The Rheumatologist who identified the fibromyalgia mentioned a possibilty of poor sleep(quality not time).   
« Last Edit: 14/08/2009 06:22:27 by Finally »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5267 on: 13/08/2009 21:46:04 »

Very interesting, Finally!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5268 on: 13/08/2009 21:50:25 »

I hope our probiotics testers will confirm effect on Pois soon ;)


Me, too. My retired-psychiatrist friend, struggling with strange digestive symptoms, suggested probiotics to me, but my GI doc completely disagrees with it (for me).
 

Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5269 on: 14/08/2009 05:46:24 »

I hope our probiotics testers will confirm effect on Pois soon ;)


Me, too. My retired-psychiatrist friend, struggling with strange digestive symptoms, suggested probiotics to me, but my GI doc completely disagrees with it (for me).

My info on probiotics is everyone should be on them.... are there people that should not?

PS
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5270 on: 14/08/2009 06:06:40 »

I hope our probiotics testers will confirm effect on Pois soon ;)


Me, too. My retired-psychiatrist friend, struggling with strange digestive symptoms, suggested probiotics to me, but my GI doc completely disagrees with it (for me).

         From probiotic tester Goingcrazy here, I'm doing pretty good.  Haven't O'd since the 31st of July though so can't really "confirm" much.  Except that (as seen in my last posts) I had about 5 orgasms on the 30th-31st (my b-day so i had to lol), I took the first 4 really well and normally, the fifth one is what threw me off... I can't say I really was in POIS though... but something similar.
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5271 on: 14/08/2009 06:11:26 »

I also notice even after healing. When I dont sleep enough i feel pois memory kick in and some fatigue but not as bad as pois. But it was never like this, before when i dont sleep enough i get hyper.



.........and these are reason why i believe it is connected to adrenaling.

              Weird,  I stayed up to about 7 am the previous night and I felt better than if I had gone to sleep.  I slept til about 10 am, woke up and just felt relaxed, no bad moods, etc. for the whole day.  What do you mean by adrenaling?  CCconfucius?
 

Offline Finally

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5272 on: 14/08/2009 06:32:56 »

I hope our pro biotics testers will confirm effect on Pois soon ;)


Me, too. My retired-psychiatrist friend, struggling with strange digestive symptoms, suggested probiotics to me, but my GI doc completely disagrees with it (for me).

I have taken Probiotics since 2002.  I had very encouraging results initially then the effect seemed to level off to a general main tenace type result.  I take Primal Defense Ultra 3x/day. Don't know why but it Seems to work best if you include a lot of fruit, particularly berries in your diet.
Not a cure but it seams to improve energy level.
P.S. if new to pro biotics expect some diarrhea.
« Last Edit: 14/08/2009 06:35:38 by Finally »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5273 on: 14/08/2009 14:23:26 »
Hi people,
After downloading this thread to my computer (via “print” and then saving as a pdf and word document) I’ve spent days and days reading it and catching up - it really does take that long to read it all and even then I had to scan over a few bits. I keep saying it but well done again to everyone who has kept it going.

I’m pleased to say I’m back in the BALLpark (is there a pun there? sorry!). After a few years of ‘just getting on with life in spite of POIS, research into my POIS is underway again. I've just been to my local doctor. He was very good in that he quickly admitted he’d never heard of the condition and recognised it was important to do something but that there was nothing he could directly do. He asked me what I wanted him to do and I asked him to refer me to an endocrinologist as a starting point - he agreed. I also asked for a blood test for: Testosterone, SHBG, FSH, LH, Prolactin, Cortisol, DHEA-S, Thyroid function (thyroid is a routine check up for me as I’ve had an underactive thyroid since having radio-iodine treatment for an over-active thyroid many years ago – infact as I’ve mentioned elsewhere on the forum my POIS started after my thyroid treatment which I believe may be a very important clue) - he agreed to the tests and I should have the results in about a week.

As others have found, it certainly did help in the meeting with my doctor to have the print-out of Dr Waldinger’s paper with me. I also had a letter from a leading psychosexual therapist I saw 4 years ago saying that she believed I had POIS and coming from a very experienced and well – qualified psychologist, that effectively  dismisses any notion of ‘it’s all in your headness’.

My appointment with the endocrinologist will likely be some weeks in coming. I’ll report back any significant blood results in the meantime.

There's  been a bit of debate here about when to have blood tests done. I had my blood test out of POIS symptoms. I firmly believe that it is important to have tests before orgasm when symptoms are not felt AND after orgasm when you are feeling most symptomatic (often day 3 for me).  I also think that if there is any hint of a significant result (eg. if you are in normal range of a test but only just) then its important to repeat the test if possible. Ideally the before and after tests should be done quite close together to help the comparison. One needs to know your resting/normal levels out of pois to properly realise what has changed in pois. I realise though that there is a financial aspect to this if you are paying for testing and forced into only being able to afford one test or other but ideally I'd say get both. This has been much discussed elsewhere on the forum so I don't want to say much more. I intend to do a test after orgasm when I am feeling symptomatic to compare with the one I've just had. However, I have too many social events coming up that I am looking forward to to do it now !

« Last Edit: 14/08/2009 14:33:31 by mellivora »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5274 on: 14/08/2009 14:30:06 »
This might be stating the obvious but its important:

A few things make testing tricky for us I think. There is natural variation in hormone levels within any one individual anyway which could depend on any number of things like whether you’ve just been engaged in activities/ exercise, socialising, time of day, seasons etc. I do sometimes wonder whether, if a healthy person was tested frequently enough, there would be certain times that they might be out of range of certain hormones depending on their mood, what they've been doing, time of day, sexual activity etc. Likewise, if someone is often out-of-range, they might occassionally test within-range due to natural hormone fluctuations. There seems to be an awful lot about hormones and the balance between them that science has yet to find out.

Also, without knowing why, there is some variation in the severity of a given individual’s POIS symptoms - some of my POIS episodes are more severe than others. This makes testing remedies difficult and many trials are needed before conclusions can be drawn. Having said that, no-one knows your body as well as you do so, especially in the cases of people who have had POIS for years, its possible to filter out and recognises beneficial effects of treatment to some extent.
And then there's the placebo effect which is frequently referred to on the forum.

I haven't tried relora yet, my doc agreed I should probably give it a go when I told him it had helped some (I realise not all) fellow sufferers so I think I'll get some.
« Last Edit: 14/08/2009 14:36:53 by mellivora »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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