[Counterpoints]

Great work again!

I think before we send out 3 or so letters, it would be good to make as big as list as possible of potential places to send things to.  If anyone has any ideas about who would be good to contact, please share.

[demografx]

Fascinating study, Martin. But I don't see where the emails are.

Martin, I found it! You didn't tell me I had to open my eyes and look!!  []

[martin88]

You didn't tell me I had to open my eyes and look!!  []

[]

There is an other nice study from the same person :
If a letter will be sent there I think we'd like to ask for the details of these studies (lab values)

Department of Medical Psychology, University of Essen, 45122 Essen, Germany
Recent studies from our laboratory have investigated the hormonal response to various forms of sexual stimulation, including film, masturbation, and coitus in both men and women. This series of studies clearly demonstrated that plasma prolactin (PRL) concentrations are substantially increased for over 1h following orgasm (masturbation and coitus conditions) in both men and women, but unchanged following sexual arousal without orgasm. Here we discuss evidence suggesting that the PRL response to orgasm may play an important role in the control of acute sexual arousal following orgasm. Supporting this position, chronic elevations of PRL (hyperprolactinemia) produce pronounced reductions in animal sexual activity, and significant reduction of libido and gonadal function in both men and women. These data suggest that PRL may represent a peripheral regulatory factor for reproductive function, and/or a feedback mechanism that signals CNS centres controlling sexual arousal and behaviour. Thus, we propose a theoretical model of the role of PRL as a neuroendocrine reproductive reflex.

[demografx]

We just hit 200 Pages! There must be a significance to that somewhere!!! []

[martin88]

I just wanted to respond to this because it was something that looked like it could go into the compendium...but excessive conversion to dopamine to norepinephrine to epinephrine, based on my biochemistry classes, doesn't make too much scientific sense.  Although I suppose it is possible (by a super long shot) that we overexpress the enzyme between dopamine and norepineprine and underexpress the enzyme between norepinephrine and epinephrine, which might cause a buildup of norepinephrine to abnormal levels and cause POIS. 

Thanks Pyropeach ,
I'm convinced norepinephrine is involved in pois. You can read Deloun's posts about this.

[demografx]

This is the worst first-24 hours' early POIS period since starting treatment. If I report the excitement, I should report this. The only reason I can come up with for this is just like the last bad event: more stress/anxiety than usual. Endocrinologist believes hormones can be thrown out of whack when that happens.

 []

[demografx]

Martin, the prolactin article is interesting. My endo says that we don't really understand the role of prolactin in men. In women, it's obvious (lactation).

[NakedDynamo]

Demografx: I'll have to take you up on that Airfare to appear on Oprah   []

I agree entirely with Counterpoints. By Making this condition more known to the general public will really help this cause. (Counterpoints - Really also Love the Summary of all efforts to date as well.)
Like I said, I think that a lot more people suffer from this (Where did the 1/10,000 come from ?) Many just never think they can do anything about it and accept it as normal.

I would again like to Thank you all for your efforts so far. If it wasn't for you, I would have never realised this condition myself (I fit into the thinking it was normal category).

Here is another Suggestion more (possibly) down to earth suggestion as a starting point, which you may already have contemplated....

What about Registering a Domain Name, and setting up a website specifically dedicated to POIS and moving this Forum onto the new site?
Here could be a place to consolidate all the fantastic information over these last 200 pages.
1. The YouTube Video could be shown on the site.
2.  Links to Articles
3. Provide References provided in an organised manner.
4. Host the Survey on the server also...(perhaps with a Quick Questionnaire for newcomers to determine if persons could have POIS.)
4. Provide an Status and updates of all attempts to make POIS more known (Like the one Counterpoints has put together)
5. A FAQ page
6. Possible Treatements page
7. Most importantly....an Open Invitation for researchers....

I think this would certainly Co-ordinate the efforts a lot more, and provide . Yes, it will probably cost a little -- (Fundraiser for Website as a starting point?)  But I think the effort/cost/return ratio on something like this would be worth it, especially if someone on this forum already has the know how to do this and would be willing to assist set this up.

Counterpoints: This could be a way of Rounding up the ideas and Organising them - Setting Some specific Actions and asking for volunteers on this site to do them..Which is already happening!

Finding this site was great. But was Very tiresome to read through 200 pages of Comments just to find information. User friendliness would greatly assist in spreading this information - especially if we are asking researchers  to visit a website with 200 pages!

So in Summary ....More Ideas, Organisation, Volunteers and then Action.

[demografx]

ND, a few things can help with sifting thru 200 pp. You can tailor Google searches to this forum, (several posts on that), B_Jim's p 11 summation, and Pyropeach is compiling a compendium.

Sorry for brevity, off to a meeting, but hope that helps you somewhat, as well as others reading this.

We have explored most of what you suggest, but as CP asked, what is your level of commitment to make this all happen?It's taken some of us a week or more to get a simple question answered amongst us, and the little that we have achieved has at times felt like a Herculean effort. Not being negative, but I've watched 2 years of reality here.

Many thanks for contributing all these terrific ideas!

[demografx]

ND, I'd like to add that the web-infrastructure here as part of Naked Science Forum, with 24/7 tech assistance from the NSF staff has been excellent. I shudder to think how/who would/could implement that effort independently at our own site! But it is a great idea!

I'm all for change, and I realize that we need to move on from "survival" stage MO, but I don't want to put a whole lot of thinking into trying to makeover Switzerland into a world-class nuclear power. []

[martin88]

Martin, the prolactin article is interesting. My endo says that we don't really understand the role of prolactin in men. In women, it's obvious (lactation).

About women they also have prolactin increased after orgasm, but no pois..(97% of pois cases are men).

[martin88]

Hi Nakeddynamo, you have good ideas but like Demo said it was explored before and what you're saying is already in progress for a part. Unfortunately we don't always have the time/energy to be fully involved in this.
I think the best is simply to start working on what you're able to do, like Pyropeach is doing now with his compendium, or like other people did before. You don't seem to be bothered by the idea of giving your identity (Oprah, domain name) but I think many people here won't want to tell their family or boss etc  that they are suffering from pois. However I saw a (cured) pois case explaining his condition on tv,  so maybe you're right

[POIS-SUFFERER]

We just hit 200 Pages! There must be a significance to that somewhere!!! []

There is... 25 posts per page 200 pages or... 5000 posts!

PS.

[martin88]

[Just in case my precedent post was misinterpreted (it was edited also), I'd like to add that I'm not for any form of censure here. I think that anyone without exception is welcome here to express whatever he thinks to be  relevant ]

For those who had been diagnosed with hypothyroidism,there is a possibility of hyperprolactinemia:
The article include an email address for the email list (with a name of an endo from a university).
http://www.cmaj.ca/cgi/content/full/169/6/575

I saw the site for rare diseases. There is a nice list of email addresses there!

Pois Sufferer,
5000 posts is a lot! Maybe when we'll be to 50000 posts we'll finally find a reason and a cure for pois !
If possible I wanted to know more about your Ativan experience, does this work everytime ? And are you taking this immediately after release? Thanks

[POIS-SUFFERER]

Pois Sufferer,
5000 posts is a lot! Maybe when we'll be to 50000 posts we'll finally find a reason and a cure for pois !
If possible I wanted to know more about your Ativan experience, does this work everytime ? And are you taking this immediately after release? Thanks

I take it when I can not stand the effects of POIS, once taken 10-15 minutes and I am a new person..... when it wears off 8-16 hours later I hope the effects are less at that point. I get really bad sometimes with very scary inability to talk.... and also very odd dizzy, sort of a head ache, very hard to describe feeling in my brain! its very troubling, but once on ATIVAN I am good to go.

I orignally was introduced to ATIVAN though my first depression and later anxiety issues.... and its good to note, I think, that a lot of POIS suffers are also anxiety suffers.... and stress disorders. I think my POIS is stress and anxiety related and somehow some system in my body is not working well due to that.

PS

[martin88]

I get really bad sometimes with very scary inability to talk.... and also very odd dizzy, sort of a head ache, very hard to describe feeling in my brain!

PS,
I can certainly identify myself to all the awful smptoms you mention, except that I don't have any positive effect with Ativan... Maybe I should try again.
When I know I'm in this state I have to do things where people are not involved which is not always easy. Anyway I'm not very productive at this moment.
For sure this inability to talk is also causing a part of the anxiety.
Hope you'll be better soon!

[POIS-SUFFERER]

martin88,

What dosage of ATIVAN? Is it the type you swallow or the one you put under your tongue? I use the under the tongue type it only takes 10-20 minutes to kick in, and 1mg, I jave tried the swallowing type at at 1mg for that type I do not get the same results, not as good. (I weigh 200lbs if that makes a difference to dosage)

If I take 2mg all at once I can start to not remember things that happened for the next 8-10 hours! So its rare for me to go above 1mg.

PS

[Counterpoints]

martin88,

What dosage of ATIVAN? Is it the type you swallow or the one you put under your tongue? I use the under the tongue type it only takes 10-20 minutes to kick in, and 1mg, I jave tried the swallowing type at at 1mg for that type I do not get the same results, not as good. (I weigh 200lbs if that makes a difference to dosage)

If I take 2mg all at once I can start to not remember things that happened for the next 8-10 hours! So its rare for me to go above 1mg.

PS

I've used 0.5 mg sub-lingual Ativan pills... I think I've at least tested 1.5-2 mg at once.  It doesn't help me with POIS. 

[martin88]

martin88,

What dosage of ATIVAN? Is it the type you swallow or the one you put under your tongue? I use the under the tongue type it only takes 10-20 minutes to kick in, and 1mg, I jave tried the swallowing type at at 1mg for that type I do not get the same results, not as good. (I weigh 200lbs if that makes a difference to dosage)

If I take 2mg all at once I can start to not remember things that happened for the next 8-10 hours! So its rare for me to go above 1mg.

PS

PS,
I'll know this for next time.
Unfortunately I can't remember this information (maybe I took too much of it!) and I couldn't find the prescription in my files. It was more than 15 years ago ... (It was some very small round and white pills..). Since I was feeling an effect I suppose it was enough.
Usually in pois I feel a lack of tension in the nerves for action (like if I need a stimulant to move) and I remember this was aggravated by Ativan.
It seems there are differents type of pois if we compare our 3 experiences.

[demografx]

We just hit 200 Pages! There must be a significance to that somewhere!!! []

There is... 25 posts per page 200 pages or... 5000 posts!

PS.

Thanks, PS!