Post Orgasmic Illness Syndrome (POIS)

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Offline Shahnameh

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« Reply #14850 on: 27/10/2011 01:46:02 »

New possible solution: WASH THE SEMEN OFF YOUR PENIS.


I always wipe the semen off after masturbating and I've done it in the shower a few times and rinsed it off completely after and I still get the same severity of POIS symptoms. I find it very odd that you don't get POIS from sexual intercourse and I'm not aware of any cases like that here at this forum.

edit: I see you haven't posted in a couple years so welcome back to the discussion. Are you still taking fenugreek?

Nope, not taking Fenugreek anymore. It started to be less effective as time went on. I think its efficacy might be a result of the placebo effect. I was a little annoyed since I had endorsed it so strongly here. I'm also a little concerned that my current practice of washing the semen off is also just a result of the placebo effect. That's why I was looking to see if it worked for anyone else.

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Offline Itsthatskater

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« Reply #14851 on: 27/10/2011 04:28:47 »
I take a very large dosage of niacin the morning after O'ing (3080 percent of your daily value) and i feel fantastic. Dont forget i gave the name POIS to my doctor and basically summarized our problems and told her about all of us on the forum and stuff like that. She understands it most likely is not a mental thing. And also i take flush free niacin , but i get flush like symptoms immediatley after O'ing without taking Niacin, Some weird stuff my body does.

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Offline Green

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« Reply #14852 on: 27/10/2011 19:30:46 »
Does anybody else here find the their symptoms changing over time (years I mean)? I used to get hit with instant severity - very debilitating for a few days. Now (I am 47) I can feel pretty much fine same day (just a hint of POIS), and also pretty good next day - almost enough to make me feel like I have been cured. But day 3 (right now) I have been struck down with all the usual symptoms of POIS - sweats, nausea, aching eyes, swimming headache, sense of body temperature being all over the place (but on checking it is fine) some disorientation and cognitive grind. Hell last night I was skating - today (3 days after O) I am struggling to type this.

I am at a loss on this, apart from the fact that everything seems different after a nights sleep (not sure if that is of significance), yesterday reasonable - today awful. Anybody else evolved into this delayed reaction?

POIS is very odd illness, I have also found my symptom complex varies throughout the year and times, in summer POIS is much less, winter POIS is much harder to deal with and requires much more down time.

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Offline Willem

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« Reply #14853 on: 27/10/2011 19:48:28 »
Does anybody else here find the their symptoms changing over time (years I mean)? I used to get hit with instant severity - very debilitating for a few days. Now (I am 47) I can feel pretty much fine same day (just a hint of POIS), and also pretty good next day - almost enough to make me feel like I have been cured. But day 3 (right now) I have been struck down with all the usual symptoms of POIS - sweats, nausea, aching eyes, swimming headache, sense of body temperature being all over the place (but on checking it is fine) some disorientation and cognitive grind. Hell last night I was skating - today (3 days after O) I am struggling to type this.

I am at a loss on this, apart from the fact that everything seems different after a nights sleep (not sure if that is of significance), yesterday reasonable - today awful. Anybody else evolved into this delayed reaction?

POIS is very odd illness, I have also found my symptom complex varies throughout the year and times, in summer POIS is much less, winter POIS is much harder to deal with and requires much more down time.

I agree that it is very complex.  Before I knew I had POIS I kept looking at different factors.  For instance, I've moved every couple of years and every time my POIS got a lot worse for months.  In retrospect, I think it was the fact that each place has a different set of allergens and my immune system was always recalibrating.  Also noticed a correlation with stress and lack of sleep, but I personally notice no difference with respect to seasons, temperatures, or amounts of sunshine. 

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Offline Vincent M

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« Reply #14854 on: 28/10/2011 03:21:27 »

Nope, not taking Fenugreek anymore. It started to be less effective as time went on. I think its efficacy might be a result of the placebo effect. I was a little annoyed since I had endorsed it so strongly here. I'm also a little concerned that my current practice of washing the semen off is also just a result of the placebo effect. That's why I was looking to see if it worked for anyone else.

Hmm well I've been taking fenugreek for about 3 months now and I haven't noticed any decrease in it's effect on my POIS. I do take it with garlic or tea as i find this enhances the effect. How long did you take fenugreek for before it stopped working for you? I am 100% sure it's not a placebo effect for me because my eye burning goes away almost entirely every time i take fenugreek and that is not something that can be influenced by my state of mind.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline mellivora

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« Reply #14855 on: 28/10/2011 08:46:36 »
I take a very large dosage of niacin the morning after O'ing (3080 percent of your daily value) and i feel fantastic. Dont forget i gave the name POIS to my doctor and basically summarized our problems and told her about all of us on the forum and stuff like that. She understands it most likely is not a mental thing. And also i take flush free niacin , but i get flush like symptoms immediatley after O'ing without taking Niacin, Some weird stuff my body does.
Hi Itsthatskater,
Do you take Niacin only after O or do you take regular doses (eg. daily) anyway? You are the first person I remember reading about for whom Niacin taken AFTER O has really helped (everyone else seems to have found they only get beneficial effects if taken BEFORE O, although some find if they've taken some before then doses in the days after can help a bit if they still have symptoms..). I assume if you are taking such high doses and it is a non-flushing Niacin that it is Nicotinamide/Niacinamide that you have. Could you tell us more about your Niacin routine and what type of tablets (look on the ingredients) you have. Thanks.
And well done for talking to your doctor. Its great that she accepts the reality of the condition.

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Offline Itsthatskater

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« Reply #14856 on: 28/10/2011 12:48:30 »
I take a very large dosage of niacin the morning after O'ing (3080 percent of your daily value) and i feel fantastic. Dont forget i gave the name POIS to my doctor and basically summarized our problems and told her about all of us on the forum and stuff like that. She understands it most likely is not a mental thing. And also i take flush free niacin , but i get flush like symptoms immediatley after O'ing without taking Niacin, Some weird stuff my body does.
Hi Itsthatskater,
Do you take Niacin only after O or do you take regular doses (eg. daily) anyway? You are the first person I remember reading about for whom Niacin taken AFTER O has really helped (everyone else seems to have found they only get beneficial effects if taken BEFORE O, although some find if they've taken some before then doses in the days after can help a bit if they still have symptoms..). I assume if you are taking such high doses and it is a non-flushing Niacin that it is Nicotinamide/Niacinamide that you have. Could you tell us more about your Niacin routine and what type of tablets (look on the ingredients) you have. Thanks.
And well done for talking to your doctor. Its great that she accepts the reality of the condition.

Actually this is Niacin as Inositol Nicotinate (400 mg)

and Inositol as Inositol Nicotinate (100 mg)

and the Niacin from the multivitamin


I woke up with my first day of POIS Today via Nocturnal Emission  and i knew from the start it was going to be terrible...and so far that is how it is.....

I had Eggwhites, Whey protein shake, Niacin, Multivitamin, and 2 advil.

Im not sure how this is going to work as i just took this less than a half hour ago but i will let you know how it works...

Right now My eyes are itching but thats about it..

And another thing I dont understand why they would take it before O...I take it after to get rid of my symptoms... And i dont see how taking niacin before could help...
« Last Edit: 28/10/2011 12:50:19 by Itsthatskater »

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Offline apostate801

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« Reply #14857 on: 29/10/2011 01:27:22 »
I take a very large dosage of niacin the morning after O'ing (3080 percent of your daily value) and i feel fantastic. Dont forget i gave the name POIS to my doctor and basically summarized our problems and told her about all of us on the forum and stuff like that. She understands it most likely is not a mental thing. And also i take flush free niacin , but i get flush like symptoms immediatley after O'ing without taking Niacin, Some weird stuff my body does.
Hi Itsthatskater,
Do you take Niacin only after O or do you take regular doses (eg. daily) anyway? You are the first person I remember reading about for whom Niacin taken AFTER O has really helped (everyone else seems to have found they only get beneficial effects if taken BEFORE O, although some find if they've taken some before then doses in the days after can help a bit if they still have symptoms..). I assume if you are taking such high doses and it is a non-flushing Niacin that it is Nicotinamide/Niacinamide that you have. Could you tell us more about your Niacin routine and what type of tablets (look on the ingredients) you have. Thanks.
And well done for talking to your doctor. Its great that she accepts the reality of the condition.

I've had good results taking Niacin before bed everynight for almost a month while having an O through sex 1-2 times a week.  I was close to posting my result but then masturbated 2 weeks ago and I got hit with a harsh dose of POIS so I'm not sure if it was the Niacin, O through sex or neither.  Sigh!

I've also thought of washing off my penis/skin after, usually do it in one form or another.  Doesn't get rid of it but it may help
« Last Edit: 29/10/2011 01:31:19 by apostate801 »

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Offline tatvamasi

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« Reply #14858 on: 30/10/2011 04:03:05 »
Hi Everyone .. I cant believe it gives so much relief after hearing about this syndrome and am not the only one.. as I have been with this effect for almost 14 years now. I was constantly speaking about it even with my mom but in vain, no one or nothing solved.  I tried and try a lot of affirmation, but it wouldnt give me focus or motivation or confidence and inturn weakens my will power drastically in what I am doing. I feel like my eyes are burning after ejaculation. It takes me 5-7 days for me to get back to normal state.

With the above symptom, and I came out this morning again and went to gym immediately and ran for 1 mile . Probably because of endorphins..pois effect was not so intense. but is there.
So if anyone of you can suggest me a way or drug which helps me to get out of this mental state would be much greatful. Thanks for this forum and support each of you giving each other is awesome really feel like cure for this dire disease is in near future hopefully.....

Is there anybody who is in U.S number where I can call and discuss. I was and really desperate to share and discuss. After 14 years of confusion and suffering I found out today about this forum.

God Bless you All

I came out
« Last Edit: 30/10/2011 04:07:26 by tatvamasi »

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Offline Vincent M

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« Reply #14859 on: 30/10/2011 12:43:35 »
I feel like my eyes are burning after ejaculation. It takes me 5-7 days for me to get back to normal state.

With the above symptom, and I came out this morning again and went to gym immediately and ran for 1 mile . Probably because of endorphins..pois effect was not so intense. but is there.

welcome, tatvamasi. My eyes also burn while in POIS. I've found that fenugreek capsules taken with raw garlic or tea will relieve my burning eyes almost completely. Others in our group also take fenugreek to relieve a number of other POIS symptoms. The brands I've tried so far are Solaray and Nature's Way. Both of those brands work for me, but I believe some here have said that the Solgar brand is the best. Fenugreek helps the best if taken about an hour or 30min before having an orgasm.

Keep in mind that as with all alternative medications there may be drug interactions or other unwanted side effects so do some research before taking anything. However I've had no negative side effects from it and I've been taking it for 3 months so far. Shortly Demo will welcome you officially to the forum and give you a bunch of info to look through. I highly suggest you look through that info as it summarizes a lot of the work we've done here. I'm pretty sure you'll find something here to relieve your symptoms to at least some extent.
« Last Edit: 30/10/2011 12:52:17 by Vincent Marcus »
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline demografx

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« Reply #14860 on: 30/10/2011 18:56:53 »
POIS Video

h t t p : / / t i n y u r l . c o m / 3 w x 5 3 z 2

(remove spaces in the link directly above)
« Last Edit: 30/10/2011 18:58:35 by demografx »

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Offline demografx

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« Reply #14861 on: 30/10/2011 19:01:40 »

tatvamasi, welcome to the POIS thread of The Naked Science Forum!




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

Our new POIS Forum - architectural genius: "daveman" - for detailed subject-by-subject discussion!
http://www.POISCenter.com/forums/index.php
Our 4-year-old POIS thread here at Naked Science Forum will also always remain open for newcomers, for general unstructured discussion, and historical research of the 10,000+ postings here since 2007.

The Learning Channel's (TLC)  feature TV presentation on POIS, featuring our member here at this forum, "Animus". It was aired on May 22, 2011. Here is a link to the YouTube file for the POIS  TV documentary, "Desperate Measures":
http://www.youtube.com/watch?v=6sdaR18vw1s

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

The POIS Information Website is home to the famous POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

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:
http://www.youtube.com/watch?v=UWBxAUC9k1g

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
http://forums.delphiforums.com/POIS/chat

Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


Available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggests one possible avenue of treatment.

3. First POIS Research Study, 2002

We have a copy of the first formal medical investigation on POIS by Prof. dr. Marcel D. Waldinger,MD,PhD, and Dr. Dave Schweitzer, MD.

  
4. Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


5. British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


How to get any or all of the above 5 studies: send me or "daveman" a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and we'll send you back the PDF(s).

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 the recipient's name, i.e., "demografx", or "daveman".


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 our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapeutic community. All of this information can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT 'ALL IN OUR HEADS'! "

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. 

POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 4 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus nearly 1,500,000 page visits. Not bad for a rare malady!



SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: more than 4 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 POIS sufferers found elsewhere on the Internet by Member B_Jim.

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

for example, I tried
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" 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#.








« Last Edit: 02/11/2011 16:25:29 by demografx »

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Offline Vincent M

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« Reply #14862 on: 30/10/2011 23:39:58 »
Update on my latest experiment: Claritin

I decided to try Claritin for my POIS symptoms because a few POIS members tried it with very positive results. Since it is an anti-histamine it seems to coincide with the autoimmune theory behind POIS. I bought the generic, Loratadine, because it's cheaper.

Day Zero: Followed my usual protocol but with double the dose of fenugreek and saw palmetto and 4 thera tears omega 3 caps for a boost for my job interview which I went to at 2pm. City driving added a lot of stress to an already stressful day.
12:30am- Before going to bed I took a 10mg Loratadine pill. Didn't take my usual saw palmetto.
12:52- Had an "o" then promptly fell asleep.

Day One:
9:17am- Woke up well rested. I didn't expect to get any results the first day because I generally feel okay if I took my usual regimen of fenugreek & saw palmetto the previous day. Felt fine all day and did a fair amount of POIS research.
11:42pm- Took 1 loratadine
12:18am- had an "o" then fell asleep.

Day Two:
~9am- woke up well rested.
9:50am- Wrote in my journal: "Have a slight headache, but otherwise feel fine." The headache went away, but came back later in the day and at one point was bad enough to cause me to stop researching and just rest for a bit. I felt that the Loratadine had built up in my system too much so I decided to go a night without it. Despite the headache I had a good feeling about the Claritin(Loratadine) because normally on this day my post orgasm symptoms would begin to return, but I felt fine all day except for the headache.
~11pm- Masturbated to orgasm. Didn't take Loratadine. Went to bed, but had an additional 1 or 2 orgasms before I got to sleep.

Day Three:
8:17am- Woke up well rested and the headache was gone.
10:59am- Still felt fine. By this time my symptoms should have returned since I hadn't taken any fenugreek in more than two days so I was getting a bit excited that Claritin might be more effective than I thought.
1:22pm- Felt good enough to go outside and chop wood. I never would've been able to do this without fenugreek. Normally my joint pain would be too intense and my muscles too weak. The fact that I was able to do this provides strong evidence to me that Loratadine is effective in preventing my post orgasm symptoms and it stays in my system remaining effective for at least an additional day after taking one 10mg pill.
7:28pm- This current moment lol. Been reading up on POIS for 2 hours now and my mental energy, focus, and concentration remain strong. 

Conclusion so far: Claritin(Loratadin) reduced my symptoms by at least 50%, perhaps more, for two full days now with roughly 3 to 4 orgasms in that time. It has made me a tad drowsy and it gives me a headache if I take too much, but these side-effects are nothing compared to my usual POIS pain. I won't be able to take a Claritin every other day for the rest of my life, but I think I'll be able to switch on and off between it and my herbal supplements to help ensure my body doesn't develop a tolerance to either. I'll update on Loratadine after a longer period of testing.
« Last Edit: 31/10/2011 00:06:44 by Vincent Marcus »
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline tatvamasi

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« Reply #14863 on: 31/10/2011 00:33:28 »
I feel like my eyes are burning after ejaculation. It takes me 5-7 days for me to get back to normal state.

With the above symptom, and I came out this morning again and went to gym immediately and ran for 1 mile . Probably because of endorphins..pois effect was not so intense. but is there.

welcome, tatvamasi. My eyes also burn while in POIS. I've found that fenugreek capsules taken with raw garlic or tea will relieve my burning eyes almost completely. Others in our group also take fenugreek to relieve a number of other POIS symptoms. The brands I've tried so far are Solaray and Nature's Way. Both of those brands work for me, but I believe some here have said that the Solgar brand is the best. Fenugreek helps the best if taken about an hour or 30min before having an orgasm.

Keep in mind that as with all alternative medications there may be drug interactions or other unwanted side effects so do some research before taking anything. However I've had no negative side effects from it and I've been taking it for 3 months so far. Shortly Demo will welcome you officially to the forum and give you a bunch of info to look through. I highly suggest you look through that info as it summarizes a lot of the work we've done here. I'm pretty sure you'll find something here to relieve your symptoms to at least some extent.

Thanks for reply ... how long have u been suffering ... can I know ur email so that I can contact you

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Offline tatvamasi

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« Reply #14864 on: 31/10/2011 00:48:36 »
Thanks Vincent and Demografx


thank you Demografx...much appreciated.. am trying with fenugreek and garlic from tomorrow ... but I came out yesterday.. would it still help?


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Offline demografx

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« Reply #14865 on: 31/10/2011 01:36:47 »

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Offline Vincent M

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« Reply #14866 on: 31/10/2011 14:58:36 »
Thanks Vincent and Demografx

thank you Demografx...much appreciated.. am trying with fenugreek and garlic from tomorrow ... but I came out yesterday.. would it still help?


It does help me if I take fenugreek and garlic after an "o", but it helps me more if I take it before. I need to chew one clove of garlic raw and eat it in order to get the effect. To do this I chew it with milk to stop the burn. I did try a garlic pill a couple of times and I believe this worked as well but I don't remember what kind of garlic pill it was.

and if you have a problem with garlic then just drink some tea instead of garlic after you take the fenugreek because this works just as well for me.
« Last Edit: 31/10/2011 15:35:48 by Vincent Marcus »
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline Vincent M

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« Reply #14867 on: 31/10/2011 15:20:55 »
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.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline Vincent M

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« Reply #14868 on: 31/10/2011 16:33:18 »

Thanks for reply ... how long have u been suffering ... can I know ur email so that I can contact you

I've had POIS for 6 years now. Just send me a private message here and I should get back to you within a day.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline Habibou

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« Reply #14869 on: 01/11/2011 00:08:05 »
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.

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Offline ophicus1213

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« Reply #14870 on: 01/11/2011 02:26:06 »
Demo...this might be a crazy suggestion, but we have a massive sample and given the right survey and data collection techniques, we may be able to do some internal research.   Sifting through some co relational data generated from surveys could be beneficial to future research.  Has there ever been talk about putting a team together within the forum.  Are there any PhD sufferers?

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Offline Willem

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« Reply #14871 on: 01/11/2011 04:14:28 »
Running a survey over here to see what you think about changing the name POIS, or at least coming up with an alternative/synonym:
http://poiscenter.com/forums/index.php?topic=241.0

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Offline Willem

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« Reply #14872 on: 01/11/2011 04:17:54 »
Demo...this might be a crazy suggestion, but we have a massive sample and given the right survey and data collection techniques, we may be able to do some internal research.   Sifting through some co relational data generated from surveys could be beneficial to future research.  Has there ever been talk about putting a team together within the forum.  Are there any PhD sufferers?

Ophicus, I think that's a fantastic idea.  It looks like it will be a while before we can sponsor our own grant, but that shouldn't stop us from doing our own internal research. 

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Offline demografx

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« Reply #14873 on: 02/11/2011 06:19:26 »
Demo...this might be a crazy suggestion, but we have a massive sample and given the right survey and data collection techniques, we may be able to do some internal research.   Sifting through some co relational data generated from surveys could be beneficial to future research.  Has there ever been talk about putting a team together within the forum.  Are there any PhD sufferers?

We have a survey database of approximately 100 POIS sufferers. A couple PhD's offered assistance but maybe the timing was earlier than the data compilation.

Send me your email and I'll send you more info about what we have compiled.

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Offline demografx

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« Reply #14874 on: 02/11/2011 16:50:48 »
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 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 - - - scroll down until you reach Postorgasmic illness syndrome. "
« Last Edit: 02/11/2011 16:55:31 by demografx »

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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 »
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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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 »

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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 »

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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 »

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Offline demografx

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



THANK YOU, STEFANIE!!

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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 !

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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 :)
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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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 »

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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. "

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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.

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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.

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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.

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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 »

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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.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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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.

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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

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


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!

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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!

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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.

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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

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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



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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
.
How does Murphey do it??

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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.

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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!

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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.