[B_Daniel]

....... POIS is pretty much over for me, I've almost cured it, I'll do a write up on the other forum just incase it's against the rules on a site like this.

Take care all.

Everyone- posting on NSF about what's helped you is ALWAYS welcome!!!  The Dimitry thing was only an issue because he was lying, he had an alterior motive trying to sell us stuff, and he promoted irresponsible behavior.  Unless you are trying to lie, cheat, or steal, PLEASE SPEAK FREELY!

And if you do 'accidentally' tell us to shoot up our butt cheeks with a formula from a guy in Russia,  Demo will happily delete your post before it does us any harm  []

[daveman]

Victor, can you apply to the other forum too? We have a thread specifically dedicated to XN where we would like to get into detail for the good of everyone.

http://poiscenter.com/forums/index.php

[demografx]

....... POIS is pretty much over for me, I've almost cured it, I'll do a write up on the other forum just incase it's against the rules on a site like this.

Take care all.

Everyone- posting on NSF about what's helped you is ALWAYS welcome!!!  The Dimitry thing was only an issue because he was lying, he had an alterior motive trying to sell us stuff, and he promoted irresponsible behavior.  Unless you are trying to lie, cheat, or steal, PLEASE SPEAK FREELY!

And if you do 'accidentally' tell us to shoot up our butt cheeks with a formula from a guy in Russia,  Demo will happily delete your post before it does us any harm  []

Yes, Green, PLEASE post your exciting experiences at both forums. You are a very important, longstanding contributor to these forums!

And we all promise not to take a lethal overdose of opium - hourly - for POIS...as someone might have accidentally suggested! [] [] []

[jivetalk]

Guys, did I miss a post from Dmitry trying to sell us something? Last I read, Dmitry was simply advising what had worked for him, and it is a substance that can be purchased from numerous sources. I'm wondering why he seems shady given that I had not seen him try to profit from this advice.

You may have missed the posts and the PM's that I deleted. He was getting VERY aggressive about posting his email (spamming) and getting injectable XN samples into all your hands, after collecting some information from you. At least 4 people here were "ready to go", and I just hope to hell that they haven't done so!

You asked: Universally available injectable XN? Profit motive? Please see my reply above to silverandcol.

I was NOT about to wait for him to kill someone here with his destructive quackery!

Demo, Great Call. It is a Good thing we've got you here to screen out people like this.

At least this little episode has got us talking about XN......which according to Victor has worked for him and at least two others..(There's hope)

And in fact, this little episode has fired up the forum a little bit as well, i've gone AWOL for a day, and there's two pages full of POSTS! Fantastic.

[jivetalk]

....... POIS is pretty much over for me, I've almost cured it, I'll do a write up on the other forum just incase it's against the rules on a site like this.

Take care all.

Everyone- posting on NSF about what's helped you is ALWAYS welcome!!!  The Dimitry thing was only an issue because he was lying, he had an alterior motive trying to sell us stuff, and he promoted irresponsible behavior.  Unless you are trying to lie, cheat, or steal, PLEASE SPEAK FREELY!

And if you do 'accidentally' tell us to shoot up our butt cheeks with a formula from a guy in Russia,  Demo will happily delete your post before it does us any harm  []

HAHAHAHAHA ROFL

[demografx]

GREEN, special thanks again to you for your writeup.

We are all very excited!!

[victor.kons]

Victor, can you apply to the other forum too? We have a thread specifically dedicated to XN where we would like to get into detail for the good of everyone.

http://poiscenter.com/forums/index.php

Already applied, waiting for admin's approval

Victor

[Counterpoints]

We have to stop going from one thing to another, and just dumping them if they don't work. We throw the baby away with the bath-water. When we could be learning from every failure. We just FAIL.

Don't we get tired of just failing?

I don't agree with these sentiments.  Yes, it's good to exercise some discipline when testing a new drug.  But, assuming the person has checked out the associated dangers and is acting responsibly, there is a HUGE amount of value in testing these drugs, even in a disorganised, uncontrolled manner.  I doubt any one drug will help all of us, but there may well be drugs which help many or most of us, and we can learn that through feedback on the forum.  The main thing I worry about is someone trying too little of a drug, or not taking it in the right way, and then dismissing it.  However, on the whole, that risk does not outweigh the benefits of cautious experimentation.  We just have to be especially wary when someone reports a 'negative' result.

I have spent the last 14 years trying various drugs, and seeing whether they have any effect on my POIS.  I assumed that maybe after another 30 years of experimenting, that I may find something that helps me manage my symptoms better.  When I found this forum, many years ago, I was really excited because then it seemed we could communicate our experiments to one another.  It was as if I suddenly had 300 lifetimes of experiments, instead of just one; in this light it seemed like maybe there would be a good treatment in only a few years.  This was partly my motivation to develop the questionnaire.  It was useful to see what everyone had already tried.

Finally, we are not 'just failing'.  People have tried things, like testosterone, fenugreek, etc., told others here about it, and they have also been treated.  Their lives have been saved.  So let us not dramatically undervalue the power of the experimentation that has taken place here, just to make a point.

[demografx]

Demo, Great Call. It is a Good thing we've got you here to screen out people like this.

JT, I REALLY appreciate the sentiment because...it was painful for me!

I saw many people's hopes being raised (including mine), plus the guy is a Supreme Manipulator, so...I had to rely on my potentially unpopular and seemingly (to me at the time) risky decision.

I'm thrilled it worked out well, and we have even gained another possibly useful arrow (XN) in our quiver!

[Counterpoints]

Yes, Waldingers "study" was completely inept.

Ok guys.  I get that we're frustrated with Waldinger, and for good reason.  He's totally unresponsive and seems to play games with people who are pretty desperate for help.  But lets not be too harsh.  His work has really helped our cause gain recognition, and his study was not completely inept.

[Limejuice]

I think it's interesting that XN is a vasodilator just like Levitra.  Demo, what are your thoughts?

[demografx]

Limejuice, I'm really no longer certain what to think about Levitra and POIS.

[horizon]

Yes, Waldingers "study" was completely inept.

Ok guys.  I get that we're frustrated with Waldinger, and for good reason.  He's totally unresponsive and seems to play games with people who are pretty desperate for help.  But lets not be too harsh.  His work has really helped our cause gain recognition, and his study was not completely inept.

ok, partially inept...

whats in september i wonder? ha a new russian forum?

[daveman]

Victor, can you apply to the other forum too? We have a thread specifically dedicated to XN where we would like to get into detail for the good of everyone.

http://poiscenter.com/forums/index.php

Already applied, waiting for admin's approval

Victor

OK, you're on.

[Habibou]

It would have been fun if our lifes were as fun as a comedy show, but it isn t the case  []
Well, I arrive at a point that :
-We have to pay attention everywhere (doctors, fakers, cheaters)
-We are by our own to treat a health, which is supposed to be the most important for each one.
-My doctors discredits the "forums on internet where you can find crazy things" but in the same time the doctors never found something... kind of normal we are focused on finding the cure we are waiting for so long.
And yes, for a doctor who stated "we have found semen allergy" , got many adverts on his name through internet to work on our cause... a little bit more contact with the main forum dealing with it would have been a minimum.

[John21 (OP)]

My neurologist also suggested that it would be interesting to see how my brain reacts under functional MRI. He gave an impression that it might somehow even be possible to have it done, as he mentioned that an esteemed fMRI researcher would be doing some work locally. Believe me, if that happens I will keep you all posted!

John, I think fMRI on POIS is a most exciting prospect for us!

I have been hoping to see this done for several years.

I second Demo's enthusiasm.  That would be amazing if you could get that done!  John, would the fMRI tell resolutely whether you suffer from a migraine or not?  I did a quick forum search of "migraine" and it seems as if GoingCrazy, defsync, vandemolen3 and others have thought about this connection before.  Maybe there's something to it.   

I got the impression that a fMRI would indeed show if POIS was similar to migraine imaging. I don't know how possible he thinks it is to have this happen.  Maybe in their meetings he will discuss this curious case and be able to "supply" me for testing if the researcher get excited about the prospect.

[demografx]

And yes, for a doctor who stated "we have found semen allergy" , got many adverts on his name through internet to work on our cause... a little bit more contact with the main forum dealing with it would have been a minimum.

Sad, but we take what is good from this and build strength.

[POIS-SUFFERER]

My 2 cents worth :-)

XN seems to be very B3 related (Niacin), and my DR after much talking of my condition had stated that I should try taking B3. There are 2 kinds, one will make you very flush and one will not, he said to find the non-flush type.....

I had read someone talking about the Niacin and 5 hour energy giving someone an allergic reaction, this was not allergies, this is what the one form of Niacin does....

Anyway thought it was an interesting coincidence.

I am going to start taking my B3 and see....

PS.

[Habibou]

I have to underline that my pois got worse in April 2010 since i lost my sleeping time and now (late but at least it comes back to my mind...) i realize that at this time my GP gave me a vasoconstrictor since i complained about hypotension when i stood up! so i feel for my case, there is an important link between vessel constriction and my Pois...

like i feel my heartbeat 24h/24
in my brain as when i did sport and when i got angry when i didn't have Pois. i am sure the vessels blood flow tests from your neurologist could explain the cognitive part! i am very enthusiastic about it. when could you have a chance to get it ?! thank you!

[connor]

The main symptoms i'm experiancing are a complete lack of motivation and energy to the point where i stopped working and dropped any and all of my hobbies.  I've been attempting to do some digging and it seems that those 3 fit fairly well with low testosterone which i know some people here have had issues with as well but my blood tests have all come back normal so my doctor disregarded my concern.

over the past 3 years i've attempted about 6 different types of anti-depressants as well as many different types of therapy and seen many psychologists but nothing has helped even in the slightest.  I've been given a clean mental bill of health multiple times and am concerned its a physical/hormone issue but my family doctor has pretty much given up at this point

about 3 times in the last 3 years i've had complete relief from these new symptoms but its only been for 24 hours and i can never find a connection, any suggestions would be be greatly appreciated, thanks.

what antidepressants have you tried? wellbutrin is the closests i've gotten to curing this nightmare. i've tried all the ssris pretty much and they made things worse. i think my problem stems from low dopamine

I'd have to check my exact list but the 4 i can remember now are Pristiq(desvenlafaxine),  paroxetine, Prozzac and Wellbrutrin.  The first day or 2 of trying the welbutrin gave me complete relief of those new symptoms, i felt 100% better, was a night to day comparison.  Unfortunately that left after 24 hours and never came back in my next 10 weeks on the drug regardless of doubling and 2.5x the dose.  

Honestly i'm no expert but after trying these various anti depressants for over a year i've convinced myself its not standard depression, i've had depression in the past many years ago and this just doesn't feel the same.  Not only that but from i understand about antidepressants is they work over a period of time so for me to be relieved 100% within an hour or so of taking it makes me feel it was more likely some sort of other chemical reaction unrelated to depression.

were you on wellbutrin by itself? or was it anadjunct to another antidepressant?

I just wanted to chime in that I've been taking 150mg wellbutrin for the past two or three years. This is a fairly low dosage. I feel like I have more energy while on the drug. I feel like my "lows" aren't quite as low. POIS-induced depression and mood swings are still a big problem for me, but the wellbutrin may have lessend them -- it's difficult to remember my pre-wellbutrin self.
Connor and Spence --> what dosage did you try?

i'm on 200. i think it's helping. i seem to recover faster at least.