Post Orgasmic Illness Syndrome (POIS)

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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?

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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.

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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).

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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.

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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.

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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.

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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 »

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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...

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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:
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 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 »

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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#.

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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 »

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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.

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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 »

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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 »

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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.

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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.

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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 »

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Offline demografx

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

Very interesting, Finally!

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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).

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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

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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.

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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?

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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 »

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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 »

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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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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5275 on: 14/08/2009 15:07:44 »
Apologies for my back-to-back postings...like I said I'm catching up with all that has been going on.....
About probiotics....I saw a tv documentary a few months ago which included interviews with  some well respected authorities in this field. Part of that discussion was that gut flora is something we're only just beginning to grasp. No-one understands it very well and so the claims of probiotic yoghurt manufacturers could be premature and misleading. The conclusion was that for some people the yoghurts were beneficial and for others they were not. They could in some cases even have a negative effect and there is definite variation between brands. There seems to be a bit of variation between individuals in the gut bacteria that they have. However there is growing evidence of positive effects at least for some people.
One person that was interviewed was a Professor Nicholson who at least has demonstrated that probiotics DO influence the relative numbers of different types of bacteria in the gut. I've not researched it much and there's nothing definite I've seen to link to POIS but a couple  of articles mentioning Prof Nicholson's work are here:

http://www.bio-medicine.org/medicine-news-1/Probiotics-affect-metabolism--says-new-study-9545-2/

http://www.scientificblogging.com/news_releases/study_probiotics_impacts_metabolism

http://news.bbc.co.uk/1/hi/health/7243006.stm

Personally I've been eating probiotic yoghurts on and off for years, mostly because I like them and partly because of the initial health hype. I can't say if they have had an effect on my POIS or not but I still have POIS! (my symptoms, although still very significant,  are generally better now than they were when my POIS started over 10 yrs ago but I don't know why)

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Offline Porke

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5276 on: 14/08/2009 16:36:12 »
Just a thought guys.

From the looks of things there arent any blood results that really make a common denominator.

Also, age and health status seems to vary as well.

How about looking for a common denominator in any prescription / recreational drugs usage in the past?

Just a thought?

Its an anon forum so it doesnt matter if youre an ex crackhead :P


Anyone else care to share?

Only 2 responses to this so far...


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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5277 on: 14/08/2009 18:07:23 »
Hi Porke, it's certainly a valid topic to research, thanks for bringing it up. However, I've been pretty clean living. No recreational drugs other than a bit of alcohol and I've never been a big drinker compared to many of my friends. I've never even tried a cigarette!
Can't think of any particular prescription drugs I've had. The only thing I've wondered about in that regard is that I did have quite bad acne for a long time and used a cream pretty much everyday for years. It can't be that good to always be applying stuff to your skin but I checked out the active ingredients and from the little I've read it sounds like they're pretty safe. Didn't come across any references on the interent about them not being safe anyway.....

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5278 on: 14/08/2009 19:28:48 »
Mellivora, many thanks for catching up! Great to have your contributions.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5279 on: 14/08/2009 21:07:14 »

Porke, have you tried Counterpoints'  survey database? That's what it was designed for.

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Offline ajs

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5280 on: 15/08/2009 03:48:36 »
I just decided to check in and see what new ideas are out there and i just had to make a post. I really wish that demo would stop being so combative with certain people! everyone has a right to share any ideas they have..old and new..and i also want to know what new people are trying...please try and check the ego before u turn your computer on because i have noticed you turning alot of people off of this site and that upsets me because i am desperate for a solution!!!

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5281 on: 15/08/2009 04:12:57 »
Lauracostis, your theory on ions and neurosteroids are awesome is there a certain site that u got that from? It's interesting because i was just in the hospital because i have been vomiting and unable to keep food down since january and very dehydrated yet my potassium,sodium and chloride were all high. All my pois and fatigue and vomiting got worse when they put me on prevacid (proton pump inhibitor)that is some dangerous stuff! I have not been the same since they had me try it

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5282 on: 15/08/2009 04:14:41 »
New tests results:
From the same batch I have made few weeks ago :
(POIS day 3, early in the morning, blood test in hospital)
ACTH 16.0 (2.0-11.0) pmol/L ,  I was surprised by this one, I don't know how to interpret this result..
Cortisol : 533 (138-690)nmol/L  

(POIS day 3, 24h urine test in hospital)
Creatinine 17.3  (7.1-15.9) MMOL/D
Cortisol, I'll report.

« Last Edit: 15/08/2009 06:33:02 by martin88 »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5283 on: 15/08/2009 04:24:52 »
Ajs,Lauracostis I agree there is something with sodium and potassium , also adrenals regulate these elements..


« Last Edit: 15/08/2009 04:33:44 by martin88 »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5284 on: 15/08/2009 06:03:36 »
More from our new friend at NORD

Hi [Demo],

That article is attached.  I hope you find it inspirational! (These are just three examples of grass roots efforts to raise awareness and research funds--there are so many others.)

Thank you for your kind words.  If and when you all become interested in forming a formal group, please let me know, so that I can forward your message to the appropriate person here at NORD.

Best wishes to you all!


Sincerely,

Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203.744.0100
Fax: 203.798.2291
email: rn@rarediseases.org
http://www.rarediseases.org

Join our online community
http://nord.clinicahealth.com/

NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions

Attachment: Word doc
RAISING FUNDS FOR NORD’S RESTRICTED RESEARCH FUND
 
“Keep it personal.”  “Find your allies…”
 
These are two quotes from NORD members, expressing some of the repetitive themes echoed by families and/or patient organizations who have successfully raised funds for NORD’s restricted research program.
 
NORD realizes just how daunting it must seem to try to raise the minimum required funds of $35,000 to sponsor a NORD research grant.  But government and corporate financing is often at a bare minimum for rare disease research (for many individual rare disorders, funds are essentially non-existent).  There is a real need for individuals to take the lead in providing the initial seed grant money for researchers.
 
We decided to go straight to the horses’ mouths by contacting some of NORD’s successful family/group research grant fund raisers.  Our aim was to learn, and then to impart to our members and friends, how they took on this challenge. (We wish to point out that none of these individuals are professional fundraisers.)
 
Here, in their own words, are the methods used by some of NORD’s families to raise  money for a research grant.
 
Todd and Heather Talarico, whose 12-year-old daughter, Gabriella, has  APS Type 1 (see NORD Request for Proposal article, page_):
 
"If it's meant to be...it's up to me."   This is a motto that has held significance in our lives but was never more meaningful then when our daughter Gabriella was diagnosed with a rare disorder.  
 
Your first feeling is that of loneliness.   Unlike other challenges that parents face, a rare disorder does not come with tons of literature and a process of treatment clearly defined. You are looking for answers, but then you realize that if you want to get research accomplished, you have to push for it, yourselves.
   
Fortunately for us, we found NORD.   The passion and professionalism of the NORD community helped us to find both the solution and a platform to take action.
   
You'd be surprised to learn what you’re capable of when you get a little direction and have family and friends who care about you.  When we attended our first NORD conference in 2006, we learned invaluable lessons from those who had walked the path before us and who have loved ones with other rare disorders.  
 
We learned the importance of educating the public and raising awareness, and created our website shortly thereafter. We also learned about fundraising and NORD's research program.  It just seemed to be such a great fit for us.  
 
NORD would act as the repository for the grant funds, providing a tax-deductible base for contributors.  Then, after very careful scrutiny, NORD's medical advisory committee (MAC) would choose the best researcher/study, obtained from a pool of carefully screened and reviewed research proposals.
 
We have successfully established a restricted research grant fund at NORD for APS Type 1.  In the process, we learned a lot about fund raising.  Here are a few tips that have worked for us—
 
1. Educate yourselves.  There are books on fundraising.  If you have a local chapter of a nonprofit organization, go in and speak with the director.  You can learn a lot from those people who raise funds for a living.
1. Be tenacious.  Some people may challenge your decision-making, but if your hearts are in the right place and your motivation is high, you can sway the most challenging opponent and get them to help you too!
1. Find events that will raise awareness, raise funds, and that are fun for people to do. Our first golf outing, "Driving for a Cure," was held last year, and turned out to be a great event!   We raised awareness not only about Gabriella’s disorder, but also about rare disorders as a whole.  We had corporate sponsors buying “hole sponsorships,” and also had other events such as a “beat the pro” contest and a “tricky tray auction.”  It was fun for all and we raised over $10,000 dollars!  This year’s event will be held May 16th in Reading, PA. If you want to attend, we have room!
1. Provide flexibility to those wanting to donate. If you create a web site, set up a link to NORD.  Our site, www.apstype1.org, has a direct link to NORD’s website.  This enables people to make a donation with a credit card, on Gabriella’s behalf, to the  APS Type 1 restricted research fund.  All donations are 100% tax deductible.
1. Find your allies...those who share your common bond. By linking up with the few families who are affected by APS Type 1 in the US, we have shared success and found other ways to raise money.   Tim and Paula Muehler have organized donation programs through their local schools.  Paula went to the School Board and gained their support for in- school events, such as  "Pay $5 dollars to wear jeans to school for the day."  It was a great event in support of their daughter, Mackenzie.  Sherri and Dave Seyfort held a raffle basket and auction event in their local town, raising $10,000 dollars!  They also did a great job of getting the local newspaper to write a feature article on their son, Matthew.
1. Ask for help.  And, if someone offers help, take it.  If someone knows more about this subject  than you do, ask for their assistance.  We have no “pride” anymore.  We know what we're good at, but have become aware of where we need advice.  We no longer worry about asking anyone for help.   You'd be surprised at the level of support you will get from people if you just ask.


We've learned so much in just 2 years, and have raised close to $50,000 dollars for NORD’s restricted research fund for APS Type 1!   We know that we still have long road ahead, but are confident that with our faith, family, and friends, we can accomplish anything.
 
Reta Honey Hiers, RN, President, “The Tarlov Cyst Disease Foundation” (see NORD Request for Proposal article, page _)
The Tarlov Cyst Disease Foundation (www.tarlovcystdisease.org)  took a more formal approach to fund raising by incorporating their organization first.  “Our fund raising was preceded by years of organization and preparation,” says Reta Honey Hiers.
 
The Foundation’s Board of Directors felt it was extremely important to have the 501 (c) (3) approval before attempting any fund-raising. The next requirement  we felt  was essential was to have the Foundation’s website online, so that potential donors could read about the Foundation, its mission, specific purposes and objectives, and to learn about Tarlov cysts.
After the website was online, announcement letters were sent to those who the Foundation knew to have Tarlov cysts. “We wanted them to know that  we had laid the groundwork for a non-profit organization that would advocate for them and promote research and education in the future.”
Personal letters written by the organization’s Board of Directors were sent to family and friends to announce the Tarlov Cyst Disease Foundation and to ask for their support.  “We asked them to share the information with their family and friends and perhaps determine any charitable foundations that had grants available for which we might apply.”
They also asked the Tarlov cyst patients to inquire within their family, friends, and co-workers as to potential charitable foundations and grants for which they might qualify.  “As a result, we submitted four grant proposals to Family Foundations that we learned about in communications with family and friends. Unbelievably, we received funds from three of the four!  These grants provided a substantial amount of our fund raising efforts toward initial research...almost half of it!”
The remainder of our initial fund raising efforts came from memberships and donations from Tarlov cyst patients, family, and friends.
“This is only a beginning,” says Ms. Hiers. ” We realize that  we have much more work to do.  A philosophy of  ‘plan, work hard, organize, and ask, believe, and receive’ is one with which we began and will continue to follow. “
The Tarlov Cyst Foundation has just provided NORD with funding for their first organization- sponsored research grant. 

Teri and Mike Holdner, whose son, Joshua, turns 10-years-old this year, has hereditary tyrosinemia, type 1.(See NORD Request for Proposal article, page_)
“We didn’t want to sit around and do nothing,” say Teri and Mike Holdner of North Carolina, after they learned of their son’s diagnosis. “When NORD told us there was no research fund for hereditary tyrosinemia, type 1, we knew that we had to so something.  Becoming proactive helped us to deal with the unknown.
“Our first steps were very small.  Teri came up with the first idea-- to put donation cans out at gas stations.
“Then, we realized that we had to create awareness about tyrosinemia type 1.  So, we told our story to the local paper, and before we knew it, started to receive outside help.  Because of that article, someone contacted us, offering to help us develop a website to raise even greater awareness about Joshua’s disorder.
We posted questions for ideas for a fundraiser on our website, and came up with a golf tournament.  Having never put a fund-raiser together, we contacted Duke University Children’s Hospital & Health Center, and in turn, they put us in touch with someone who had done fund-raising for them.  (Once you have an idea and start working on it, you will be surprised by how many people want to help you!)
With the help of our Duke contact, we raised $5,000, and we then knew that we had to hold more events.  We got invited to speak about tyrosinemia type 1 at a local church, and again, to our surprise, we received a $2,300 donation.  This church, in turn, became our title sponsor for the next golf tournament.
In that church audience was a gentleman who helped us at the next golf tournament, where $15,000 was raised.  This led us to develop our 501(c)3 organization, “Joshua’s Cure.”
If there is anything that we can tell people who want to do fund-raising for NORD’s restricted research program, first and foremost—make this a personal story.  People will feel your passion and dedication, and you will be more successful.
In our case, donations raised by one other family with an afflicted child, and numerous    personal donations through fundraisers, have already helped us to fund three tyrosinemia type 1 grants for NORD’s research program.  
To date we have raised funds by holding seven golf tournaments, six “50’s dances,” two bowling tournaments, a “dating auction” at a local bar, donations of proceeds of the building of a home, one Super Bowl party, and countless personal, individual donations.  All donations have gone to NORD’s restricted research program for tyrosinemia, type 1.
It is very satisfying to us that “Joshua’s Cure” (www.joshuascure.org ) can contribute to research that will help researchers find a cure. In total, we have raised over $80,000, and are still counting!
And it all started in a small town with donation cans in a gas station!
NORD remains amazed and very proud of the tenacity of these and all the other families and patient groups who have been able to raise those precious funds.  They personify the adage that says, “Where there is a will, there is a way.”

Demo,

 This is a huge step in the right direction..

 Congratulations and I wish you all good luck and well wishes, that this will open the doors that need to be opened to get this problem attended to in a timely manner, so that all concerned can know there is hope and answers to so many questions!

None of you are alone there are many of you suffering and thus you all together make a very strong resource! There is strength in numbers and that old saying is certainly true in cases like this where you need to support each other and stand together in one voice to begin to be heard and to get some real help!

Congratulations to you all!

"Life is not measured by the number of Breaths we take, but by the moments that take our breath away."

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Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5285 on: 15/08/2009 13:48:17 »
Lauracostis, your theory on ions and neurosteroids are awesome is there a certain site that u got that from? It's interesting because i was just in the hospital because i have been vomiting and unable to keep food down since january and very dehydrated yet my potassium,sodium and chloride were all high. All my pois and fatigue and vomiting got worse when they put me on prevacid (proton pump inhibitor)that is some dangerous stuff! I have not been the same since they had me try it

http://en.wikipedia.org/wiki/Neuroactive_steroid

DHEA (one kind of neurosteroid) is a supplement I and many others have tried for POIS. For me, it has had zero effect in negating POIS symptoms. Of course oral ingestion of DHEA may be a method of deployment that is ineffective.

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Offline Defsync

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5286 on: 15/08/2009 13:55:16 »
I had a brainstorm this morning. Our medical college has to have a library, and it turns out it is open to the public, along with librarians whose main purpose is to help people find specific literature on the topic they are researching. This is the library I will be checking out:

http://www.utoledo.edu/library/mulford/refdept.html#whatis

I gotta wait till Monday for the librarians to be available. I am thinking I'll tell them I'm looking for "sexual neurological dysfunctions" and "specifics of orgasm".

While I am there I am also going to look around for a general bulletin board where I could post a paper saying "Hey I'm this guy who has POIS. This is what POIS is. If you are doing research or wish to know more about this firsthand from someone who has it, contact so-and-so."

What do you think? Anything I should or shouldn't mention when I post this bulletin? Like maybe I should mention this forum and a link?

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Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5287 on: 15/08/2009 15:07:09 »
Quote
The one I'm planning on trying is called Diphenhydramine which is most often found in "sleep aids" like Benedryl and Nytol nowadays. Obviously this can only be taken shortly before you go to sleep, nobody wants to fall asleep at work or at the wheel of their car ..... 

Will let you know how successful (or not) it turns out to be!

My antihistamine experiment wasn't too successful - oh well, back to the drawing board.

I have been taking 50mg of DHEA every morning for a month or so, it definitely makes me feel more energetic (in and out of POIS), although it doesn't specifically act on the symptoms of POIS. Obviously you should take appropriate medical advice before trying DHEA.

Sounds like a good idea Defsync, hope you have some success with that!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5288 on: 15/08/2009 22:09:51 »

Defsync, sounds good. I would use the link to this forum that I PM'ed you, the shorter one, it's easier to copy/write on paper.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5289 on: 15/08/2009 22:10:30 »

Hurray, the main thing is you're trying (and safely).

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5290 on: 15/08/2009 22:14:26 »

Demo,

 This is a huge step in the right direction..

 Congratulations and I wish you all good luck and well wishes, that this will open the doors that need to be opened to get this problem attended to in a timely manner, so that all concerned can know there is hope and answers to so many questions!

None of you are alone there are many of you suffering and thus you all together make a very strong resource! There is strength in numbers and that old saying is certainly true in cases like this where you need to support each other and stand together in one voice to begin to be heard and to get some real help!

Congratulations to you all!


Karen,

Many thanks! I do hope we can "grow" into an advocacy group as NORD and others suggest. And with well-wishers like you it sure makes this lonely road just a little easier! Thanks again.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5291 on: 15/08/2009 22:19:24 »

please try and check the ego before u turn your computer on because i have noticed you turning alot of people off of this site and that upsets me because i am desperate for a solution!!!


I'm just as desperate as you for a solution and I'll keep your points in mind. Thanks.

Very sorry to hear about your problems with nausea. I've been battling the same, since I quit reglan. Just got an Rx for Zofran, which has been successful for chemotherapy nausea. Haven't tried it yet.

I'd also be happy to explore your 'ego concerns' with you in PM, if you wish.
« Last Edit: 15/08/2009 22:41:59 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5292 on: 15/08/2009 22:30:21 »

Martin, I had similar results with creatinine. Was told to reduce red meat (which I don't eat that much).

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5293 on: 15/08/2009 23:53:44 »
Porke,
Quote
How about looking for a common denominator in any prescription / recreational drugs usage in the past?

On rare occasions I smoked marijuana, but I'm quite sure my problems began earlier than that, I can't imagine there being a connection.

Defsync,
Quote
I had a brainstorm this morning. Our medical college has to have a library, and it turns out it is open to the public, along with librarians whose main purpose is to help people find specific literature on the topic they are researching. This is the library I will be checking out:

http://www.utoledo.edu/library/mulford/refdept.html#whatis

I am reminded of the many many hours I used to spend in the local university medical library, searching and searching through a maze of medicine-speak, watching over my shoulder lest anyone I know see me there, but desperate and so ignoring my shame and embarrassment. Good luck.  [:)]

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5294 on: 16/08/2009 04:36:42 »
Take melatonin 1/2 hour before bed. (I've already been taking this to help fall asleep, and have to say it works very well, it's not like a drug where it forces you to sleep, it just puts me in the mood to sleep.  I recommend trying it if you have difficulty sleeping 1 mg to 3 mg, don't go above 5 mg or you'll regret it)
I'll let everyone know if these changes help me or not.
Sclover, just wanted to add to your melatonin post. I agree with you it can be helpful.
-Some brands contain more melatonin that what is written on the bottle (written in an article but I don't know if it's true), so maybe it can be good to find a reliable source (MD prescription ?)
-I saw supplements as low as 100mcg/caps (0.1mg).

Melatonin doses of 0.1mg can be enough to improve sleep:
http://www.ncbi.nlm.nih.gov/pubmed/11600532

Melatonin use along with certain anti-depressant medications can pose potential health risks and should only be used under direct supervision of a qualified doctor.
Different people will have different responses to its effects. Lower doses appear to work better in people who are especially sensitive. Higher doses may cause anxiety and irritability.
The best approach for any condition is to begin with very low doses of melatonin. Keep the dose close to the amount that our bodies normally produce (< 0.3 mg per day). You should only use the lowest amount possible to achieve the desired effect. Your doctor can help you determine the most appropriate dose for your situation, including how to increase the amount, if needed.

http://www.umm.edu/altmed/articles/melatonin-000315.htm

Melatonin should not be used in most children. Because of its effects on other hormones, it might interfere with development during adolescence.
http://www.rxlist.com/melatonin/supplements.htm
« Last Edit: 16/08/2009 04:49:29 by martin88 »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5295 on: 16/08/2009 05:00:11 »
Martin, I had similar results with creatinine. Was told to reduce red meat (which I don't eat that much).
I was eating a lot of white meat days before the test but no red meat..

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Offline solution

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5296 on: 16/08/2009 21:57:42 »
Im pretty sure that POIS causes are a high body reaction on any of the digestive tube walls after a polution.
Which produces all the anoying simpthoms. Watch out if you ever had hernias, unfailingly that will prove it.
« Last Edit: 16/08/2009 22:03:34 by solution »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5297 on: 16/08/2009 22:05:13 »

Take melatonin 1/2 hour before bed. (I've already been taking this to help fall asleep, and have to say it works very well, it's not like a drug where it forces you to sleep, it just puts me in the mood to sleep.  I recommend trying it if you have difficulty sleeping 1 mg to 3 mg, don't go above 5 mg or you'll regret it)
I'll let everyone know if these changes help me or not.
Sclover, just wanted to add to your melatonin post. I agree with you it can be helpful.
-Some brands contain more melatonin that what is written on the bottle (written in an article but I don't know if it's true), so maybe it can be good to find a reliable source (MD prescription ?)
-I saw supplements as low as 100mcg/caps (0.1mg).

Melatonin doses of 0.1mg can be enough to improve sleep:
http://www.ncbi.nlm.nih.gov/pubmed/11600532

Melatonin use along with certain anti-depressant medications can pose potential health risks and should only be used under direct supervision of a qualified doctor.
Different people will have different responses to its effects. Lower doses appear to work better in people who are especially sensitive. Higher doses may cause anxiety and irritability.
The best approach for any condition is to begin with very low doses of melatonin. Keep the dose close to the amount that our bodies normally produce (< 0.3 mg per day). You should only use the lowest amount possible to achieve the desired effect. Your doctor can help you determine the most appropriate dose for your situation, including how to increase the amount, if needed.

http://www.umm.edu/altmed/articles/melatonin-000315.htm

Melatonin should not be used in most children. Because of its effects on other hormones, it might interfere with development during adolescence.
http://www.rxlist.com/melatonin/supplements.htm


Martin, I have been taking melatonin for many years. Sometimes it works very well, primarily during jet lag periods.

Other times, I wind up with a hangover. Probably because I take it too late in the sleep cycle.

I take 3mg sublingual, usually the first night or two after a long flight, when trouble sleeping is at its peak. Or if I somehow become overstimulated and know that natural sleep is unlikely.

I am very glad you wrote some cautionary notes about melatonin. Most people can tolerate it very well, but there are some people who can react adversely to it. People with heart problems, for example, should check with their physician before taking it.

Overall, I have found it to be beneficial. And I have heard similarly from others.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5298 on: 16/08/2009 22:10:38 »


Martin, I had similar results with creatinine. Was told to reduce red meat (which I don't eat that much).


I was eating a lot of white meat days before the test but no red meat..


Martin, is your overall red meat consumption high? That's what my endo referred to, not just the days before the test.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5299 on: 16/08/2009 22:40:42 »
going crazy i meant adrenal glands. 

martin 88 i am getting my blood test back hopefully this tuesday and i also tested acth hopefully there is a corelation here.

Demographx has you and doctor discuss other possible factors to your pois other than low testertorone.