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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6431585 times)

Offline Vincent M

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« Reply #14875 on: 02/11/2011 16:56:15 »
This was just added to the Newcomer's Welcome post:

" It can be very  helpful to you when dealing with medical professionals to point out the POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research
:
http://rarediseases.info.nih.gov/RareDiseaseList.aspx?StartsWith=P, then scroll down until you reach Postorgasmic illness syndrome. "

I recently added the following statement to our POIS wikipedia article: "POIS is listed as a rare disorder by the Office of Rare Diseases Research(GARD).[13]It is also listed in the organizational database of the National Organization for Rare Disorders(NORD)[14]"

I just changed it to read as follows: "POIS is recognized as a rare disorder by the National Institutes for Health (NIH), Office of Rare Diseases Research[13]. It is also listed in the organizational database of the National Organization for Rare Disorders(NORD)[14]"
« Last Edit: 02/11/2011 17:08:53 by Vincent Marcus »
 

Offline demografx

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« Reply #14876 on: 02/11/2011 19:14:22 »


THANKS, Vincent Marcus!!
« Last Edit: 02/11/2011 19:46:38 by demografx »
 

Offline demografx

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« Reply #14877 on: 02/11/2011 19:34:45 »
POIS chat on a bulletin board:

http://www.godlikeproductions.com/forum1/message1687583/pg1


Interesting. I wrote a little post there to try to provide a better description of POIS.



Vincent Marcus, Teriffic Reply you wrote!!


Posted by "Anonymous Coward":

"I feel like being punished by God when I have sex or masturbation. After 1 week, teh symptons go away and everything get better in my life.

No bullshit....this really happen with me.

You need to recognize (hopefully) that sexual feelings are normal. And that if you feel that God is against you having normal human feelings, then I sincerely hope that you have a one-on-one with God, and tell him to either allow you to feel good about your human sexual feelings, or ask him how you are supposed to ignore them. "


Vincent Marcus' reply:

"I don't want to hijack your thread here, but I just want to clarify that Post Orgasmic Illness Syndrome(POIS) is a real disease and has nothing to do with feelings of religious or moral guilt or some kind of psychological unhealthy view of sexuality.

I've been an atheist all my life and watched porn with no problem no guilt at all and I still developed POIS. Every time I ejaculate whether it be from masturbation, sexual intercourse, or nocturnal emission I get painful and debilitating symptoms lasting for about a week that leave me almost completely bed ridden. These symptoms include eye burning, extreme physical and mental exhaustion, anxiety, back pain, muscle weakness, joint pain, dry skin, facial irritation, thinning hair, bloating, and painful urination and painful bowel movements.

Official studies have been done on POIS. We're on wikipedia and are listed officially as a rare disease by a couple organizations. We also have an active online forum of 283 members with POIS. Again I just wanted to clarify."



« Last Edit: 02/11/2011 19:39:28 by demografx »
 

Offline Stef

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« Reply #14878 on: 02/11/2011 20:44:42 »
Hi, Habibou and Everyone --

Rituxan (aka rituximab) is an extremely powerful immune suppressor.  It's used for certain cancers and I think for some horrifically severe (potentially fatal) autoimmune disorders. In my humble opinion -- it's absolutely not worth the risk for POIS!!

Rituxan contains a major warning ("black box warning") about the risk of a specific deadly infection that is rare but happens.  I've know the families of some of those patients -- the infection cannot be treated -- the patient usually dies a miserable, drawn out death if they develop the infection.

The infection is from a virus that 90% of us carry, and is harmless under normal conditions. But if the immune system becomes suppressed in a very specific way (like with cancer medications, Rituxan, AIDS), this ordinarily harmless virus can take off and multiply rapidly. It's one and only target is the white matter (the lining of the nerve cells) in the brain.  The result is "progressive multifocal leukoencephalopathy (PML)".

Please be very careful, Habibou.  Chronic fatigue syndrome is a gray area -- you may or may not actually have it.  I truly don't think that Rituxan is worth the risk.

Will check the latest data on this -- if there is something to report back about it, I'll report back.

 


Stef




Does anybody heard of Mabthera (rituximab)?
 
It improved a lot CFS symptoms and it is explained by the following link:
http://www.psychomedia.qc.ca/syndrome-de-fatigue-chronique/2011-10-20/efficacite-mabthera-rituximab-cause

It destroys B cells, antibodies...
20 th of october 2011.

« Last Edit: 03/11/2011 20:04:09 by demografx »
 

Offline demografx

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« Reply #14879 on: 02/11/2011 20:57:46 »



THANK YOU, STEFANIE!!
 

Offline Habibou

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« Reply #14880 on: 03/11/2011 13:30:01 »
Thank you for warning me Stéphanie :) I had no idea of that, I just got the info and it feels safe to have someone who can tell us the risks !
 

Offline Vincent M

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« Reply #14881 on: 04/11/2011 00:17:19 »


THANKS, Vincent Marcus!!

No problem. Anything to help our cause :)
 

Offline GoingCrazy

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« Reply #14882 on: 04/11/2011 04:04:05 »
Has anybody ever tried colloidal silver?

update:  nevermind, i just answered my own question by searching google on this site
« Last Edit: 04/11/2011 04:15:21 by GoingCrazy »
 

Offline GoingCrazy

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« Reply #14883 on: 04/11/2011 04:24:40 »
Posted by "Anonymous Coward":

"I feel like being punished by God when I have sex or masturbation. After 1 week, teh symptons go away and everything get better in my life.

No bullshit....this really happen with me.

You need to recognize (hopefully) that sexual feelings are normal. And that if you feel that God is against you having normal human feelings, then I sincerely hope that you have a one-on-one with God, and tell him to either allow you to feel good about your human sexual feelings, or ask him how you are supposed to ignore them. "



This really needs to be posted again and again.  The guilt associated with this is just rediculous.  We are humans that live on planet earth and in order for us to continue existing, we need to have sex on the regular.  No matter how many times.  50 times a day even sounds normal.  I used to have guilty feelings like I was being punished but the reality is that sex is completely normal, as normal as eating and sleeping.  Lets post that again.




You need to recognize (hopefully) that sexual feelings are normal. And that if you feel that God is against you having normal human feelings, then I sincerely hope that you have a one-on-one with God, and tell him to either allow you to feel good about your human sexual feelings, or ask him how you are supposed to ignore them. "
 

Offline POIS-SUFFERER

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« Reply #14884 on: 04/11/2011 17:52:34 »
Has anybody ever tried colloidal silver?

update:  nevermind, i just answered my own question by searching google on this site

I tried and it made me feel odd... so I stopped.....

PS.
 

Offline Itsthatskater

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« Reply #14885 on: 07/11/2011 18:04:17 »
So I feel like a big idiot today, Every night before i go to bed i have anxiety of a nocturnal emission happens and gives me POIS.

So i went to sleep eventually and woke up pretty early, I used the bathroom and was worried on wheter to fall back asleep or not, So i figured only for a little while, I went to sleep, And I woke up to find out i had a nocturnal emission in that short period of time.

I really cant figure out how this is possibly happening, so All i can do is take my multivitamins and niacin pills and eat yogurt all day trying to revitalize myself.
 

Offline POIS-SUFFERER

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« Reply #14886 on: 07/11/2011 21:52:32 »
So I feel like a big idiot today, Every night before i go to bed i have anxiety of a nocturnal emission happens and gives me POIS.

So i went to sleep eventually and woke up pretty early, I used the bathroom and was worried on wheter to fall back asleep or not, So i figured only for a little while, I went to sleep, And I woke up to find out i had a nocturnal emission in that short period of time.

I really cant figure out how this is possibly happening, so All i can do is take my multivitamins and niacin pills and eat yogurt all day trying to revitalize myself.

I am so glad NE's are not my issue, that would really really suck. Sorry some of you guys go through that....

On a brighter note I have started also taking some pills that help reguvinate the adrenals.... and I feel a little better since, 2 weeks now, between these and the niacin POIS still is there but not like it used to be!

We seem to all suffer also stress and anxiety so adrenals could be pretty run down.

PS.
 

Offline bastianb

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« Reply #14887 on: 08/11/2011 04:54:32 »
Hey everyone!

I just registered now to post, and may I say I'm very pleased that there is actually somewhere with some people recognizing this condition which no doctor around me believes it exists and also makes my life miserable EVERY WEEK!

I asked about these symptoms on Yahoo! Answers several times, several other online Q&A sites with health departments, even went to 3 different doctors for diagnosis and I got NOTHING. That was until I searched Google differently one time and I discovered this post.

To introduce myself, let's start with a little background info.

I'm 20, currently playing lower division professional Soccer in Europe and my POIS case has made me miserable in life and what I love to do: playing Soccer.

I first started playing Soccer at 6 and been training on and off since then, I have never really been obese and always exercised throughout my life. So all of these were just enough to get any doctor to do an ultrasound and then look at it and tell me "Oh come on, that's just stress. Relax and enjoy life."

But of course all of you fellow POIS sufferers know that what I just quoted is a bunch of crap.
There's no stress involved in POIS - other than the stress after suffering it - so I've learned in the 3+ years of me having this illness.

I started having nocturnal emissions at 16. At first they felt very strange but I got used to having them once or twice a month. Then it seemed my body suddenly got into a cycle of having to automatically empty my semen every 7 days.
About the same time that happened, I think it was when my POIS got started. 

For the first year of me having this aweful illness, I was just shocked at what's happening to me, fearing the worst I tested for everything. Kidney disease, diabetes (strong family history), thyroid diseases (family history, so I thought maybe it's this one?), heart disease (I initially thought it's heart failure) and all came back negative. Phew, but nothing's changed, still got SOMETHING wrong.

I tried to ignore the issue and find foods that help me recover, but nope, no help.

And if there's anyone here who played competitive Soccer would know how HARD it is to play under POIS conditions.
It's like everyone got a 5 minute head start in front of you and that's NOT GOOD in a sprinting sport like Soccer.

Needless to say I never stopped playing Soccer, I just have to sleep more in the day that I get POIS or what I would like to call, Nocturnal Emission day! if I don't get 12+ hours of sleep that day, I'm screwed. Literally.

Yes, I don't masturbate or have sex for a long while now!
I just let whatever it is do its work every 7 days and then proceed to suffer on the 7th day for anything from 12-18 hours.

If there's a game in that 7th day, I'm screwed big time.

I've changed my lifestyle according to this condition already, but it's not going away at all.

So I registered here to share ideas and get ideas on how to fight this... THING!

Here are other technical info about my case:

-Gets back to normal after 12-18 hours. If I do any sports earlier in the day that I have the nocturnal emission, it speeds up the process to as early as 12 hours. But the 'healing' almost always comes in the last half hour of exercise/game.

-Serious brain fog and tiredness,
--my muscles are sore and feel like not capable of lifting anything!
--In the day that I have the orgasm, it's like I don't even know how to play Soccer. It's like I lose some abilities and then regain them whenever I heal again.

-Extreme hunger starting right after orgasm, like I haven't eaten in a day or something.

-Extreme thirst starting right after orgasm, again self-explanatory, except it's followed by a lot of urine so I don't think the water really goes anywhere!

-Not being able to run and breath normally. In the days with orgasm I can't go on the treadmill with more than 13 km/h while without it I can do 15 km/h with 4.0 incline.

-More sweating during the orgasm day, followed by catching cold easier and feeling warmer in general.

-Automatically get 100x shy after orgasm (imagine that! along with not being able to breath and think and playing pro Soccer!). definitely a testosterone issue in my own opinion, not studied this in detail.

-Automatically feel the need to tell the truth to anything anyone asks after orgasm (again, this is a known effect of normal sex but this is in extreme! It's like I'm hooked to a machine that MAKES me say the truth!)

-SOME foods SOMETIMES bring immediate or sped up relief.



Great job to all those working hard for a research on this and woah what a first post huh?! needed to get that off my chest in somewhere others would understand my sufferings.

I'll be reading these forums frequently now until we have a cure!
« Last Edit: 08/11/2011 05:00:08 by bastianb »
 

Offline Vincent M

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« Reply #14888 on: 08/11/2011 10:02:54 »
welcome to our forums, bastianb. The things I've found most helpful to reduce my POIS symptoms are claritin, fenugreek with tea or garlic, and saw palmetto. I saw you mentioned testosterone - some members here including our moderator, Demo, have found relief of symptoms with testosterone replacement therapy.
 

Offline bastianb

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« Reply #14889 on: 08/11/2011 14:59:13 »
Thanks Vincent!

I've been browsing this forum for a while now and noticed that I can get almost all of those remedies in here but the testosterone therapy is not an option for me since I'm in a team sport, shame because I seriously think I'm full of testosterone on the last day before the nocturnal emission and then get depleted off of it and the cycle goes on again.

Now that you mentioned the symptom relievers, I'd like to share some of my own:

-Pistachio Nuts (Always Helps, but to a certain degree and depends on the amount I eat)
-Hot Chocolate (Helped once or twice but stopped helping at all or significantly a year ago)
-Cheddar Cheese (Used to help frequently but looks like it doesn't do much anymore)
-This is probably the most ridiculous remedy ever, but maybe a breakthrough? Everytime I'm at a barbecue or somewhere they're burning something on fire with smoke coming out of it, I get %50 relief of symptoms after 5-10 minutes of exposure. During that 5-10 minutes it's worth mentioning that my eyes get very watery looking like I'm grieving something and I can't stop it! But it's worth it once it does its job. I've subsequently done research on 'Smoke' or 'Vapor' relieving a patient's symptoms and there have been real cases where such smoke or vapor has helped symptoms (I'm not talking about cigarettes or drugs).
-Peanuts (sometimes, not sure how much and how frequent)

It would be great to see if others respond the same or not, to these.
 

Offline Willem

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« Reply #14890 on: 08/11/2011 17:07:14 »
Now that you mentioned the symptom relievers, I'd like to share some of my own:

-Pistachio Nuts (Always Helps, but to a certain degree and depends on the amount I eat)
-Hot Chocolate (Helped once or twice but stopped helping at all or significantly a year ago)
-Cheddar Cheese (Used to help frequently but looks like it doesn't do much anymore)
-This is probably the most ridiculous remedy ever, but maybe a breakthrough? Everytime I'm at a barbecue or somewhere they're burning something on fire with smoke coming out of it, I get %50 relief of symptoms after 5-10 minutes of exposure. During that 5-10 minutes it's worth mentioning that my eyes get very watery looking like I'm grieving something and I can't stop it! But it's worth it once it does its job. I've subsequently done research on 'Smoke' or 'Vapor' relieving a patient's symptoms and there have been real cases where such smoke or vapor has helped symptoms (I'm not talking about cigarettes or drugs).
-Peanuts (sometimes, not sure how much and how frequent)

It would be great to see if others respond the same or not, to these.

Welcome Bastian!!  Boy, I could not imagine trying to play a professional sport AND having POIS.  Sounds like you've done a great job of keeping it under control which is very commendable.  It took me quite a while to figure out that I had it, and during that period of ignorance I'm afraid I did irreparable damage to muscles and nerves.

Regarding the Pistachio nuts and Peanuts, I noticed one effective treatment for me was MgCl + Ca supplements.  For me, it was similar to what people describe as the niacin flush.  Nuts are high in Mg and other nutrients and may help what was depleted.  You probably already know this, but we have a number of discussion threads going on here:
http://poiscenter.com/forums/index.php [nofollow]
 

Offline bastianb

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« Reply #14891 on: 09/11/2011 00:20:46 »
Now that you mentioned the symptom relievers, I'd like to share some of my own:

-Pistachio Nuts (Always Helps, but to a certain degree and depends on the amount I eat)
-Hot Chocolate (Helped once or twice but stopped helping at all or significantly a year ago)
-Cheddar Cheese (Used to help frequently but looks like it doesn't do much anymore)
-This is probably the most ridiculous remedy ever, but maybe a breakthrough? Everytime I'm at a barbecue or somewhere they're burning something on fire with smoke coming out of it, I get %50 relief of symptoms after 5-10 minutes of exposure. During that 5-10 minutes it's worth mentioning that my eyes get very watery looking like I'm grieving something and I can't stop it! But it's worth it once it does its job. I've subsequently done research on 'Smoke' or 'Vapor' relieving a patient's symptoms and there have been real cases where such smoke or vapor has helped symptoms (I'm not talking about cigarettes or drugs).
-Peanuts (sometimes, not sure how much and how frequent)

It would be great to see if others respond the same or not, to these.

Welcome Bastian!!  Boy, I could not imagine trying to play a professional sport AND having POIS.  Sounds like you've done a great job of keeping it under control which is very commendable.  It took me quite a while to figure out that I had it, and during that period of ignorance I'm afraid I did irreparable damage to muscles and nerves.

Regarding the Pistachio nuts and Peanuts, I noticed one effective treatment for me was MgCl + Ca supplements.  For me, it was similar to what people describe as the niacin flush.  Nuts are high in Mg and other nutrients and may help what was depleted.  You probably already know this, but we have a number of discussion threads going on here:
newbielink:http://poiscenter.com/forums/index.php [nonactive]


Actually I registered there, still pending approval I think.

And I'm actually in the lowest division pro Soccer and coping with this has even allowed me to stay in this current position, otherwise if I continued ignoring and not fighting it, I would have been sitting watching TV and eating until I pass out.

It's very hard to even find the remedies around, I'll be sure to check out all the suggested ones if I manage to find them.

Thanks for the welcome!
 

Offline bastianb

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« Reply #14892 on: 09/11/2011 00:28:11 »
Thanks demografx for the welcome and the info, I'm very interested to know whether you guys did any tests with surveys like for example 10 POIS patients take something and report back or maybe fill a questionaire about daily behavior to cross reference the info and see what things are really shared by us POIS sufferers?

I've seen similar procedures being done to first evaluate the patients of a new disease and then test them in the lab.
Of course as I've read, there's not yet an actual research being done because of lack of funds but maybe we can do the self evaluation part until then? Might help, perhaps. Just giving ideas, because I'm DESPERATE to get a cure for this, like any other sufferer is I'm sure.

Once again, awesome job on this forum and POIS Center as well. Keep on doing it guys!
 

Offline demografx

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« Reply #14893 on: 09/11/2011 04:55:18 »

bastianb, interesting what you say about surveys. I sent you some historical forum information via PM as a reply.
 

Offline jacksonsean

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« Reply #14894 on: 09/11/2011 14:20:43 »
Hi, Im really interested to know how many of us have been circumcised?

Also, does anybody know of anyone who lives in a hot country and has POIS. I dont mean who decended from a tropical country, just those that live there now.

Would love to hear feedback on both questions

Thanks
 

Offline demografx

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« Reply #14895 on: 09/11/2011 16:01:31 »



Hi, Im really interested to know how many of us have...


jacksonsean, feel free to ask away at our POIS Poll Center!
http://poiscenter.com/forums/index.php?board=15.0


 

Offline daveman

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« Reply #14896 on: 09/11/2011 17:00:00 »
Hello all,

Haven't been around here in a while, sorry, very busy!

If anyone is waiting to be approved over at SMF, please let us know here so that I can pick you name out of the 30 or so SPAM intents that I recieve and have to filter every day.

Bastian, I've OK'd yours thanks
.
 

Offline bastianb

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« Reply #14897 on: 09/11/2011 21:15:00 »
Thanks demografx and Daveman!

The most interesting article I read from those you linked to, was the New York Times article.
I think it stands out more from the others because of the writing style and in-depth info.
 

Offline tatvamasi

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« Reply #14898 on: 09/11/2011 21:35:32 »
Thanks Vincent and Demografx.... for fenu greek idea....was taking since last 10 days... last week i had 'O' and felt eyes burning was not there after wards.. which consequently decreased my pois effects by 60%... I felt brain fog ...on second and third day..

folk's can you suggest me a idea ...to get rid or decrease my sexual hankering or craving coz am trying to be in spiritual path..for which it is absolutely neccessary to control my senses.

God Bless You All!
 

Offline Suppertime

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« Reply #14899 on: 10/11/2011 01:52:09 »
Hi all, I'm new here. Just wanted to verify if anyone is having similar symptoms.

Whenever I ejaculate, sex or masturbation...

- I feel really nauseous, almost about to throw up
- My stomach area (probably my prostate) feels sore and bloated.
- I get small migraines, but this doesn't happen all the time
- My speech becomes impaired, and I start to slur/mumble words
- On top of that, I have trouble thinking of words to say, my mind becomes very blurred

Because of the above, I tend to go into anti-social mode, trying to avoid people as much as possible, which has ruined a lot of my relationships, with friends and more. I've seen a urologist just a month ago. He suggested that I had an inflamed Prostate (Prostatis), prescribing me ciprofloxacin. I took it for 3 weeks, but no positive results. I stopped taking it before the schedule monthly dosage, and had a minor two day depression.

Going back to the urologist next week, will keep you guys updated. But is there anything I should say to the urologist that might lead him to a correct diagnosis?

Thanks and goodluck everyone. 
 

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