Author Topic: My "cure"  (Read 20301 times)

sameer7777

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Re: My "cure"
« Reply #20 on: October 14, 2012, 05:00:01 AM »
Thankyou JOHN !!!
You sound just like me I also have the thing started at 18 after masterbation !!
Since than I am 43 now and raised a family but could not grow my business and lost all my friends and have really bad relations just because of this deadly disease POIS , which I think is worse than cancer and all out symptoms mental and physical are all hidden and people don't take it seriously !!!
Any way JOHN could you please tell me in detail what are the supplements u taking before and after O !!
I am currently taking B1 200 mg (100*2)
B6 50 mg (25*2)
Normally after Food !!
JOHN I am surprised I am also my best at late night so what should we do work at night !!!
Yes I also get hot flushes what are these

Any way guys may God help us !!!
I am breaking many hearts I know of my family but it's not me it's my disease Thankyou stef !!!
Take care all !!!
And thanks everyone !!!
pls don't expose me.
AFTER SEX/MASTERBATION (FLU LIKE SYMPTOMS)
1)BACK NECK PAIN GOES TO DOWN SPINE
2)NERVES LIKE SQUEEZED OUT
3)MORNING FEET NERVES PAIN
4)NASAL INFLAMMATION
5)BRAIN FOG
6)DEPRESSION
7)HIGH SUGAR LEVELS (TRIED INSULIN FOR 1 YEAR MAKE ME MORE SICK

B_Daniel

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Re: My "cure"
« Reply #21 on: October 28, 2012, 01:25:49 AM »
Very moving post, Jon.  Thanks for the update on what you're going through.  I also have constant pois, but I don't think my pois is as severe as yours, bc i don't get the schizophrenia like you do.  Kurtosis' supplements have also helped me a good deal.  I take a crapton of different supplements, but I think the main ones which are helping are protein shake (does the same as your spirulina, but provides a stronger kick than your spirulina, I believe), ginkgo biloba, and Active B Vitamins.  Another thing I'll add is that I have gotten days where these supplements have substantially balanced my body and kicked out my pois.  I also get days where the supplements do very little.  I'm still trying to figure out why that is, through a process of elimination to figure out what's going on.  I could be competely off, but my hunch is that we have a dopamine clearing problem, and that after a few days of new dopaminergic activity, we build up dopamine which then isn't being cleared out and our symptoms return.  I take wellbutrin which helps me, but I have to take it 2 days on 2 days off to get the benefit.  wacky, right?  Anyway, I don't think the reason your supplements stopped working was something as arbitrary as a change of the seasons.  You're right, something must be getting used up or burnt out or the body has adjusted to the new supplements, etc.  Something definitely shifted out of your favor.  What this means to me is that your fish oil/ Vitamin C/ Spirulina supplements did was fix a problem in a pathway that touches upon our POIS problem.  But it didn't FIX the pois itself.  I think the more supplements that you find that work, the more clues you'll have to the puzzle.  I'm excited you're taking TRT.  Please keep us posted on that.  Also, please try Active B Vitamins and Ginkgo Biloba - 1 pill twice a day of each.  And get some good quality protein too.  Since we both have constant pois, I'm curious whether that helps you.   
« Last Edit: October 28, 2012, 01:28:50 AM by B_Daniel »

himanshu

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Re: My "cure"
« Reply #22 on: September 22, 2013, 04:16:07 AM »
Hi everyone,

I was contacted by someone anonymously asking if I would share my experience and my "cure" with this forum. I'll try to be brief about a complex problem in exchange for being open to answering any questions.

I have been officially diagnosed with bipolar type II and (atypical) gender identity dysphoria. Additionally, I have had intermittent problems with what might be considered POIS. I have always had stronger climaxes than others. In fact, most partners that saw me climax for the first time thought that someone was wrong and became very concerned! But whenever I had an excessively strong orgasm, even by my own standards, I would feel absolutely horrible physically and emotionally. It is hard to articulate those moments and I never understood what caused it. It would acutely last anywhere from 30 minutes to a couple of hours and have a hangover like feeling for a day or two. Sometimes it was so bad that I would find myself crying in the shower trying to hide it from from my other half. I never talked about it with anyone because it didn't seem like that big of a problem compared to the other issues I was experiencing in life. Sometimes I felt anxious about getting an excessively strong orgasm because I could never predict when they would occur. I only knew that it was more likely to occur when I experienced hypersexuality. (Hypersexuality can occur during mania, which are both symptoms of bipolar.) When I read about POIS online, I had an "ah hah" moment and wondered if I had a milder form of it compared to others.

Now to the cure part.. I have struggled with atypical gender identity dysphoria since puberty. I never felt like a guy, but I sure as heck didn't identify as a woman either! I felt alone because I didn't identity with anyone! I felt unique in a bad way. And even worse the gender incongruity caused self destructive and risky behavior. When I felt that serious injury was imminent, I acquired and used depo provera. It is used as birth control in women, but it works equally well to lower testosterone levels in men. For a few months it was effective at alleviating the dysphoria and self destructive behavior. I was never willing to continue taking it on my own without some kind of professional supervision. Eventually I worked up the courage to work with a therapist. I didn't find success immediately because it took several years to find the right one. If you get anything out of this post, please don't give up!

With the right therapist and when I couldn't take the dysphoria any longer, I worked with my family doctor and endocrinologist to lower my testosterone levels. Everyone agreed that depo provera was a bad choice because of the mood instability that it caused when I stopped taking it. So instead they prescribed leuprolide acetate, which is a GnRH antagonist. It is very effective at lowering testosterone to castrate levels. The irony is that for about a week or less, it can significantly raise natural testosterone levels.

When I initially started the leuprolide acetate something amazing happened--I felt like a guy for the first time in my life! It was a short 4 days, but I went on to take the leuprolide acetate for a month. I stopped after a while because the castrate levels of testosterone was just too much. The leuprolide acetate was a LOT stronger compared to the depo provera. I spent the next 6 months talking to my therapist, my mom, and my other half about those 4 short days. Eventually everyone agreed that if it was physiologically reasonable to raise my testosterone levels within the normal range and to a level that would allow me to feel like a guy, it was worth seeking out an endocrinologist that was willing to work with me and give it a try. After finding an endocrinologist and running some blood work, I was given that opportunity. To make a long story short, the androgel worked far more effectively than the first few days of the leuprolide acetate! It was so strong, it was intellectually shocking. We decided to go more slowly and work up to a target dosage. I was at the lower end of the normal range and it was decided that I should try the middle of the normal range.

I would describe this experience akin to walking into someone else's body! Many surprising things have changed since starting androgel. The one that most of you may be interested in is my moderate symptoms with POIS. I have had a number of very strong climaxes since starting the Androgel and I have not experienced ANY bad symptoms after strong climaxes. The first several times I had a strong orgasm, I just knew that something was going to happen. But it never did!

I have no idea if this could work for anyone else with POIS. I can hardly believe that putting on Androgel every 3 days could make such a HUGE difference in my life. I don't understand many aspects of this. So far as I can tell there are no documented cases on PubMed of someone  increasingly their natural level of sex hormones and having it alleviating their gender dysphoria. I have talked with male to female transexuals that were given the opportunity to raise their testosterone levels. For them, it just made their gender dysphoria worse. At this point, I refuse to believe that I am unique but I have also given up on trying to come up with how or why Androgel works for me.

On a side note, Androgel has also greatly reduced my bipolar symptoms. It has reduced it to such a degree that I haven't had any significant instability since starting the Androgel. Others have called this a miracle. I, however, continue to be cautiously optimistic.

If you have any question, feel free to ask away. I'm open and honest. :)
hi guys.. im a doctor ..jst like u i have sufferred from pois for past 4 years.. i have lost very gud career opportuniti​es,friends and even gud grades because of this...to cure it i tried nicotine..d​idnt work then i tried ginko biloba..did​nt work...then i tried norethreste​rone...it wrked a littlle bt i was not sure about the right dosage..i starded with higher doses..taki​ng 200mg perday it used to decrease the symptops but they would cm back again...fin​ally i have found a regime that works here it is.....take 10mg of norethreste​rone within minutes of orgasm...th​en keep urself on a mainatainan​ce dose of 5 mg every 2 to 3 hrs for 2 days...for those who have cognitive dysfunction during pois like me...u will feel way better...be​lieve me..my theory is that we jst have to prevent the sharp fall in progesteron​e levels afet aorgasm...i​f the brain does not fall short of progesteron​e supply....n​othng happens..:D:D:D

LegatoMan

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Re: My "cure"
« Reply #23 on: April 07, 2014, 02:58:45 PM »
guy26: This is FASCINATING and RINGS SO TRUE to me. First of all, congratulations on finding a cure for your ailments. It's wonderful to read.

In the last one or two years, I've felt increasingly "genderless". No sexual fantasies or urges, except the simple stimulation from masturbation, and a lack of "manliness".

I know EXACTLY the feelings you're talking about. I used to be a very "manly" person, emotionally stable, confident, very attracted to women, had a low voice, etc. All of these traits have slowly left me over the past 5 years. Now I'm not interested in girls at all really, and I don't relate to women any differently than men. They just seem like "people". And when I close my eyes, I might as well be male or female. It's very disconcerting.

This further reinforces my theory that low testosterone is my problem!
« Last Edit: April 07, 2014, 03:02:58 PM by LegatoMan »
Affected since Sept 2008. Very gradual onset of symptoms: Testicular atrophy, low libido, brain fog, lethargy, depression, digestion issues. Worsening of all symptoms the 3-4 days post orgasm.

ve-to

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Re: My "cure"
« Reply #24 on: May 05, 2014, 07:54:15 AM »
hello Jon , your story is also the same as mine .. ! I started to have serious problems at 16 years old, with the feeling that everything changed after orgasm (thoughts, emotions, sense of reality, goals, energy etc etc) is like going back to childhood and suddenly very tired , even now that I am 34 years old. I call it : the effect of returning from vacation : go back to your house but it is as if everything was new and you had to get used to , there is not the same feeling of when you leaved and it takes a few days to get it yet ... unfortunately all this happens within seconds after orgasm and it happens in the same place .. there is no need to leave for the holidays :/

As I wrote a few months ago , I tried a bit ' all .. but only niacin did something for the brain fog , the rest of the symptoms remained .. including the holiday effect , lethargy , no memory , difficulty concentrating . .. basically a zombie !  b6 induce me to a neuropathy

To write these few lines took about 1 hour.

I think it is right to try an alternative name for the disease, because post- orgasmic syndrome scares people and then laughing at this .. including doctors ! Not a good deal for us if the doctors laugh , and I assure you that in Italy has happened to me many times .. what do you think ?
« Last Edit: May 05, 2014, 08:50:55 AM by vetro79 »

POISrival

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Re: My "cure"
« Reply #25 on: May 05, 2014, 03:37:31 PM »
Quote
(When I have orgasms I do not use my hands as much as I want to, the less touching and pleasure, the less symptoms for some reason. Sometimes I do not use my hands until the moment of climax.)

I thought I was the only who experiences this.


hello Jon , your story is also the same as mine .. ! I started to have serious problems at 16 years old, with the feeling that everything changed after orgasm (thoughts, emotions, sense of reality, goals, energy etc etc) is like going back to childhood and suddenly very tired , even now that I am 34 years old. I call it : the effect of returning from vacation : go back to your house but it is as if everything was new and you had to get used to , there is not the same feeling of when you leaved and it takes a few days to get it yet ... unfortunately all this happens within seconds after orgasm and it happens in the same place .. there is no need to leave for the holidays :/

As I wrote a few months ago , I tried a bit ' all .. but only niacin did something for the brain fog , the rest of the symptoms remained .. including the holiday effect , lethargy , no memory , difficulty concentrating . .. basically a zombie !  b6 induce me to a neuropathy

To write these few lines took about 1 hour.

I think it is right to try an alternative name for the disease, because post- orgasmic syndrome scares people and then laughing at this .. including doctors ! Not a good deal for us if the doctors laugh , and I assure you that in Italy has happened to me many times .. what do you think ?

It is always frustrating to hear about doctors who laugh at their patients' complaints. The problem is not the name, Its their way of thinking.
POIS is my worst enemy