[demografx]

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).

[paul.fr]

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.

[demografx]

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.

[demografx]

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!

[CertainlyPOIS]

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]

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.

[Finally]

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).   

[demografx]

Very interesting, Finally!

[demografx]

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).

[POIS-SUFFERER]

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

[GoingCrazy]

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.

[GoingCrazy]

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?

[Finally]

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.

[mellivora]

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 !

[mellivora]

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.

[mellivora]

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)

[Porke]

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

Anyone else care to share?

Only 2 responses to this so far...

[mellivora]

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.....

[demografx]

Mellivora, many thanks for catching up! Great to have your contributions.

[demografx]

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