[prism]

I have always said the NHS is great if you fall out of a tree or something but inept when it comes to dealing with chronic issues.

But to answer the question fully; i'd rather have an alexander session in the emergency room than take a batch of drugs for being ill (of course unlikely). this would give me more easier breathing, more bloodflow to the head, more natural movement to my neck, waking of my senses and sineses etc. etc

last year if had a migraine, i got it instantly sorted via an alexander lesson, as drugs never seemed to work at all. drugs never get to the true cause, at best they only temporarily dampen the symptoms, for me dont seem to even do that.

Contrary to popular belief, people dont get randomly ill anyway, it takes years and years of bad use, which they havent properly dealt with because they are probably unaware of it, most likely unaware how to.

[demografx]

Chronic issues like cancer? Kidding aside, I do agree that there is vast ineptness on many issues. But I'm not so sure that the alternative world can reliably point to huge, replicatable successes either.

[demografx]

@DemoGrafx - do you realise that testosterone also boosts dopamine in the brain. Something I have read on a few occasions. Just throwing it out there as a possible 2ndary effect.

Very interesting. If you run across a reference again, please post a link!

[prism]

Daveyboy,
[I didn't know that it had a name, Paruresis.

Hey!,
since we're listing embarrassing problems we've all got/had, here's an interesting one.
for all the years ive had pois, since teenager, i've also had something known as 'ppp's - perily penile papules'. They are little white spots on the head on the penis, under the foreskin, on the sort of back edge (feel free to google it!). luckily they have never been that bad but still something that lingers on the mind. To my surprise, i know now, they are linked with the pois because they have dramatically reduced in recent months during my recovery period, virtually unnoticable now.
Just curious!

Another thing also, my penis, although totally straight once totally erect and never crooked, when in the process of getting arused or going back down, in the past would 'want' to lean, sometimes quite forceably, towards one side- towards the tight/operation side of my body- this too is correcting itself (believe it or not)! It doesnt do this anymore, now I have finally released the muscles/nerves on the tight side of body causing the pois, it has straightened things there too!

[EDS]

EDS, with your new POIS treatment, do you find that some episodes are inexplicably...not so good?

This one right now is that way for me. And it's inexplicable because I thought if I did this...did that...well, this time, I thought I allowed enough time to lapse between episodes. But it's now Day 2 and it's lingering. Most of the time, it's 90% - 95% POIS-free, but now and then....

Mood-and-events might be an explanation. I might have to go back to the ol' diary.

Strange!

During my relatively short time of using T patches, I have noticed one episode that was worse than others. I didn't know what to think of it, though, because of my lack of experience. Makes you wonder if we still need an additional treatment of some sort.

I am still thankful for this partial remedy!

[greg44]

neurologist I saw said I have stiff person syndrome. He said my GABA levels are low in my brain because immune system attacks them. GABA supposed to inhibit muscles and allow rest but if it is very low then muscles will be unable to rest in a constant state of activation that results in severe tightness, muscle knots, muscle spasms.

After I orgasm it releases a ton of tension that built up in all my muscles. However, I start to experience a huge spike in the amount of muscle spasms, random shocks, random pains. My brain seems to go out of control trying to tighten the muscles back up. Same thing happens if I try to stretch any the tight muscles. Symptoms are at their best when I just leave the muscles be and let them be super tight.

He recommends that I take high dose of valium(Diazepam) to enhance GABA.

[acronym]

I am looking into boosting dopamine again. The whole, low dopamine, high prolactin makes sense to me. I am going to try some Mucuna first, but I dont have any faith in the herbal/natural products. I am checking out parkinson related meds - which specifically boost dopamine. Not for long term use, but only the day after maybe. Something like Deprenyl, or Sinemet.
[/quote]

Porke
I think the path you are going down is well worth trying. I have made a post in the past regarding Kaunch. This is the Ayurveda (indian medicine) name for Mucuna. I have mixed feelings regarding this herb. I took it a number of years back for precisely the same reason you are going to try it and I had mixed results. I did not think it did much for the first few months I took it, but then I had a good spell of health during winter (I always feel better in winter for my chronic fatigue syndrome) and I noticed my POIS symptoms were better than normal + I had stronger erections, stronger orgasms, more horny, was more motivated, did better in the gym, and was more positive mentally. It seemed to wear off after a while but I also ran out of Kaunch around the same time. The supplier I used was not selling it anymore. I found another local source and took it again the following year but was disappointed. I then ordered some more a year later direct from India and tried it at varying doses but again was disappointed. If you read about its supposed benefits in Ayurvedic medicine it sounds like a very promising herb for us to try, so it was such a shame I did not get consistent results. Earlier this year I read a Parkinsons forum that discussed Mucuna where a number of people critisised it for its variable quality. Nearly all supplies come from India, where there is no standardization in terms of quality. The herb is sourced from many different farmers in different regions at different times of the year and who knows how long it sits on the shelf or in bags. Just be mindful of this. Can you please post your results, even if they disappoint. Deprenyl could be worth trying as well. I took the smart drug Hydergine (for blood flow not dopamine) and I found it did help with cognition but nothing to get really excited about. Good Luck.

[acronym]

Greg44
I don't really experience stiff muscles to the degree you described. I do however get tender (to touch) muscles. If you are not crazy about taking valium, especially at high dose, you might want to suggest muscle relaxants to your doc. A drug like Baclofen I believe helps with GABA and would not make you so drowsey like valium. Just a thought.

[prism]

Greg44 - I totally relate to your description of your muscles.

[RhythmSpring]

Once again, has anyone tried cabergoline? It's made for people with hyperprolactinemia. It reduces prolactin and increases dopamine. Seriously, it sounds worth a try.

[Z_one]

Z_one, if you want to see more testing data from my pre-and-post-POIS-treatment results, just let me know. I got lazy on my last post, but I now have more energy since this is Day 2 []

Demo,
 
Heard you loud and clear.....by the way having trouble on more than one occasion sending more than two PMs or more....I'll try again for what concerns inquiries and replies....Meanwhile your tests results are more than enough for me as posted.....

Many thx. 

[sweden]

Hi,
(I'm no native English writer, there might be some spelling/gramtic errors below)

This is my first post and I found this thread when searching for anything that could explain the symptoms I have.
The description of POIS is not a 100% match of my symptoms, but the closest I have found.
I have had problems with chronic headache and tiredness for 10+ years and have tried countless of drugs and talk to several doctors, physicans, sexual advisers, etc. and done every test/examination they could think of. No one has been able to find what's wrong with me or find any relief from my symptoms.

The thing that has confused me (and the doctors I have talked to most) is that my symptoms get's A LOT worse by having orgasms. It takes about 14-18 hours after orgasms before I get quite bad headache, problems concentrating, tiredness, and basically just want to sleep. This (worse) condition usually last for up to 8 hours, but the chronic headache is quite permanent. This is so problematic for me that it's hard to work and I really try to minimize orgasms.
Having sugar makes my headache/tiredness worse and this (worse state) last for a couple of hours.
Mornings are also problematic with increased headache (and extreme tiredness/sleepiness).

Is it possible that someone with POIS actually get a lot worse not directly after orgasm, but after 12+ hours?

ANY help/input on my condition would be of HUGE value for me. My condition is pretty much destroying my life.

[demografx]

EDS, with your new POIS treatment, do you find that some episodes are inexplicably...not so good?

This one right now is that way for me. And it's inexplicable because I thought if I did this...did that...well, this time, I thought I allowed enough time to lapse between episodes. But it's now Day 2 and it's lingering. Most of the time, it's 90% - 95% POIS-free, but now and then....

Mood-and-events might be an explanation. I might have to go back to the ol' diary.

Strange!

During my relatively short time of using T patches, I have noticed one episode that was worse than others. I didn't know what to think of it, though, because of my lack of experience. Makes you wonder if we still need an additional treatment of some sort.

I am still thankful for this partial remedy!

Me, too!

[demografx]

Once again, has anyone tried cabergoline? It's made for people with hyperprolactinemia. It reduces prolactin and increases dopamine. Seriously, it sounds worth a try.

RhythmSpring, someone here on the forum is about to try it for POIS (told me via confidential Private Message).

I wrote to a friend who is a pharmacologist/attorney for a major State health agency. Here's what he said about cabergoline:

" [Demo], the drug has a side effect of increased libido and hypersexuality [see below]. But it also has some potentially dangerous cardiac and pulmonary [side effects] as well. Here's info from the FDA:

'Physicians should use the lowest effective dose of Cabergoline for the treatment of hyperprolactinemia

[Hyperprolactinemia is the most common endocrine disorder of the hypothalamic-pituitary axis]

and should periodically reassess the need for continuing therapy with Cabergoline. In addition, patients receiving long term treatment with Cabergoline should undergo periodic reassessment of their cardiac status, and echocardiography should be considered. Any patient who develops signs or symptoms of cardiac disease, including dyspnea, edema, congestive heart failure, or a new cardiac murmur, while being treated with Cabergoline should be evaluated for possible valvulopathy

As with other ergot derivatives, pleural effusion or pulmonary fibrosis have been reported following long-term administration of Cabergoline.

Some reports were in patients previously treated with ergotinic dopamine agonists. Cabergoline should not be used in patients
with a history of, or current signs and or clinical symptoms of, respiratory or cardiac disorders linked to fibrotic tissue.

Pathological gambling, increased libido, and hypersexuality have been reported in patients treated with dopamine agonists including Cabergoline. This has been generally reversible upon reduction of the dose or treatment discontinuation.' "

[demografx]

Is it possible that someone with POIS actually get a lot worse not directly after orgasm, but after 12+ hours?

Yes, sweden, this is a VERY common pattern with POIS.

sweden, welcome to the POIS thread of The Naked Science Forum.




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

Our new POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

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.

There are 2 ways to get it: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF. Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

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 nearly 3 years, which has attracted over 150 POIS sufferers worldwide who have posted here, plus nearly 500,000 page visits. Not bad for a rare malady!

[demografx]

sweden, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: almost 3 years' worth of posts from 150+ Forum members, and an additional 150 POIS sufferers found on the Internet, but not on this forum.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://www.thenakedscientists.com/

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

and 1,000+ results came up for "demografx" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

[demografx]

having trouble on more than one occasion sending more than two PMs or more....I'll try again for what concerns inquiries and replies.

Z_one, thanks for reporting that. Please let me know if it continues, we've been having some tech difficulties. That way I can report it to tech admin. Thanks!

[GoingCrazy]

I've been sick the past few days and i find it really weird that I no longer wake up with brain fog and derealization, which usually fades later in the day.  I've been excreting tons of yellow mucus indicating an infection of some kind.  Can this all be some sort of infection or sinus inflammation causing weird mental symptoms?  I don't know but I have been feeling 100% the past few days besides the coughing and stuffy nose.

[Z_one]

Dear fellow members,

This is to report that Iam thx God 100% cured.



Iam currently down from 14 days to 1.....using Rhodiola, Damiana and Sasparilla & Nigella sativa (SEPARATELY)

Main properties of the herbs are the anti-depressant effects of both Rhodiola & Damiana (Increase in Dopamine & Serotinin thx to MAOI properties as well as general tonics)

Natural corticosteroid benefits of Sasparilla....while Nigella sativa boosts both the endo & immuno systems....


Plz read carefully side effects of the herbs & contradictions if u wanna try... special precautions & warnings with regard to using MAOIs

Though everyone is different.....Wishing success to all....


Special thx to Demografx that has really contributed alot & initiators of this forum that really assisted me alot in pinpointing down a cure for myself....Will surely remain an active member as a mean to deepen my knowledge and assist other sufferers...


After years and years of agony and misery....today is hopefully a new dawn for me....a fresh breath...a new life....


P:S Will certainly report the consistency of my formula as well as post any additional helpful info.... 

....though now is time for me to get back to the gym... [] [8D]



Kind regards.

[sweden]

Thanks a lot for feedback!!!  []  []
 I have just ordered a package of Relora and will try this since this seems to be what has helped most people. Unfortunally I have not yet found a place in Sweden that sells fenugreek, but I will continue to look.
I'm very sure that I will get back with updates and questions. Right now I have a lot of information to digest and in my personal life I have a new girlfriend that make life in general great, but my condition a lot worse  []

Best Regards from Sweden.