Post Orgasmic Illness Syndrome (POIS)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15900 on: 28/03/2012 15:10:10 »
CCconfucius and mellivora,

We know the incredible effort -- HOURS!! -- that you both spent putting the reddit post together.
http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/

You two have selflessly accomplished this mentally grueling task -- and under a major deadline -- with the sole aim of raising funds for the first-ever POIS research grant.

Regardless of what comes from this in fund donations, you two have gone above and beyond the call of duty!!!

POIS IS NOW ON THE PUBLIC'S RADAR, BECAUSE OF YOU!!!!  POIS IS NO LONGER A DISORDER THAT NO ONE HAS EVER HEARD OF!

Your dedication and fantastic teamwork is/will be more meaningful than any of us can even possibly know at this time.

Gracias! Merci!  Danke Schön! Спасибо! Grazie! Dank u! Hvala! Go raibh maith agat!  Aitäh! Mulţumesc! Dankie! Děkuji!
 
In other words, Thank You -- from all of your international POIS forum members.


Demografx and Daveman

« Last Edit: 29/03/2012 11:49:09 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15901 on: 28/03/2012 20:54:30 »

Thanks, the [reddit] response and and lots people actually understanding was enough for me.


I agree, a good part is pleasant to read and the awareness is increased. There was even new POIS cases who now know what they have.Thanks again.


I agree with Martin.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15902 on: 28/03/2012 21:30:45 »

What I don't understand is why everybody isn't robbing their neighborhood bank in desperation to fund NORD and get rid of POIS ???!!!????


Ditto!! Demo!!

Again, just think of the better life and potential for even more income if we can beat this thing!

More friends, money, security, and just down right feeling better.

Isn't it worth a little sacrifice now to have a better future?

Please commit to give to OUR research fund!
DO IT NOW!
DON'T PROCRASTINATE!

PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!



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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15903 on: 28/03/2012 22:21:21 »
Thanks, the response and and lots people actually understanding was enough for me.
I agree, a good part is pleasant to read and the awareness is increased. There was even new POIS cases who now know what they have.Thanks again.

The whole reddit posting experience has been overwhelmingly positive. We usually only talk about POIS amongst ourselves. Discussing it with non-pois sufferers, hearing their views and just getting POIS out there in the public mind a bit more has been great. As you say we seem to have reached some new POIS sufferers - worth it just for that.  I've also got a lot of PM's from people. One or two are from people with other rare diseases identifying with our situation. We are not the only people in a struggle that's for sure.

I'd like to say a huge thanks to NIGHTINGALE who first suggested posting on reddit. Without him none of this would have happened. This is a forum full of sparks. You just have to catch one and start fanning the flames and who knows what obstacles it'll burn down. If you get inspired by something someone posts on here. SHOUT about it and pursue it. I bet it'll be rewarding for you and it could be hugely beneficial for all of us and future POIS sufferers.

Public thanks to CC who has been great to work with on reddit. Nordnurse gave up a lot of time on this too and made a really important contribution to honing the wording of our post. And thanks to other POIS people who posted comments on reddit to spread the word and inform.

Animus - you're amazing. Your story attracted a lot of attention on reddit. Without life stories like yours and your demonstration of incredible resolve and determination, the reddit post wouldn't have been possible.

Incidentally, although we are no longer a "hot" post on reddit in terms of activity, we are still the "top scoring" post in terms of upvotes and comments. What an amazing community reddit is...

http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/

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Offline JackSparrow

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15904 on: 28/03/2012 23:07:47 »
Hello everyone,
  I spotted the post on reddit and my jaw dropped.  I've been unable to function normaly for many years and over time my understanding of what I have has evolved.  What I always found hard was to describe how I feel.  The way I finally described to my doctor last week instead of explaining the aches and pains I just said I basically feel like I have the flu and I'm 100% convinced it's related to ejaculation.   He was not ready to make the link because he's not aware of any such case.  I quickly browsed some posts here and I'm not sure if all my symptoms match.
Here are my symptoms
-After ejacualation I tend to get dry itchy skin on the inside of my forearms within minutes.  The more ejaculations over the course of a week I get the worst it will get until it's like dermatitis.
-Some times I'll also get itchy eyes.
-I'll crash for 4-5 days.  Day 2 and 3 being the hardest.
-My back feels inflamed and sore and dead tired.
-I get some joint pain in the back/shoulders.
-When I've crashed I dread going to sleep cause sleep is difficult as I'm restless and cant find a relaxing position. 
-I wake up feeling worst. 
-Everything feels like a chore.  I basically dont want to do anything.
-This all started after I got a mono 8 years ago or so.

What do you guys think?

I'm seeing my doctor again in a few weeks and I will definitely bring some documentation on POIS.

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15905 on: 28/03/2012 23:45:08 »
Welcome Jack Sparrow,
I'm glad you found us. Your symptoms definitely sound like POIS to me. Do you have cognitive difficulties (what we call here "brain fog" - ie. difficulty concentrating/thinking clearly as well as the tiredness). you said you feel like you have the flu and its linked to ejaculation. Well...that's us!
I don't think the dry itchy skin is a common symptom but I think there are one or two people here with similar - maybe they can post.
Exact symptoms vary from person to person but tiredness/brain fog applies to just about all of us I think to an extent. Some people don't get joint/muscle pain, others do. It seems to be the case that there could be more than one category of what we call POIS.

Pretty soon I think you'll get a welcome from our moderator Demografx. That'll contain a whole load of links and info that'll give you plenty of rocket fuel to tackle your doctor with..I found that taking some printouts of the few medical papers that have been written on pois to my doc helped convince him of its reality.
« Last Edit: 28/03/2012 23:47:14 by mellivora »

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Offline JackSparrow

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15906 on: 29/03/2012 00:04:33 »
Yes. I get the fog.  I also feel my memory is really bad now.  I also tend to not want to talk much when I'm crashed.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15907 on: 29/03/2012 00:55:46 »



JackSparrow, welcome to the POIS thread of The Naked Science Forum!  We believe that 2012 is POIS' Breakthrough Year! We hope to launch serious POIS Medical Research! A great time to be here!




**(If you have any technical questions, please feel free to PM (private message) Daveman or me -- go towards the end of this welcome message (after the 5 available research articles are described) for instuctions on how to send PM. We'll be happy to explain!)***


If you haven't already done so, but would like to like to join the new forum,  send "daveman" a PM here at the Naked Science Forum -- "daveman".  He'll reply to you.


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

Our new POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click HERE first, and then look for "CHAT" button towards top of page, 6th button to your right!


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


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 suggest 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.


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
:


And in Europe: Orphanet now lists POIS on their website! - Click here!

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 our pages have been read nearly 2,000,000 times! 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#.



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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15908 on: 29/03/2012 01:15:31 »
Yes. I get the fog.  I also feel my memory is really bad now.  I also tend to not want to talk much when I'm crashed.
that back feeling inflammed you get, is it a burning like sensation. If it is i get that, i feel all mine on my lower back.
the back feeling dead tired: in the morning when i wake up i feel all my tiredness is concentrated in my lower back. And when i play sports i get same feeling 1 day into pois.
I also have mono(EBV) infection but 95% of american adults have it to.

you should go to poiscenter.com and check how the treatment list by me and vincentmarcus

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15909 on: 29/03/2012 05:23:16 »
Great to here about the reddit posts and everything.

I'm not totally convinced about a reaction to semen.  But if I do remember a while back, day 1 of POIS, I remember a terrible burning sensation in my groin that lasted about the whole day.  This was only once.  Orgasm is so complex and I'm not so sure if claritin is working for me because it is easing my reaction with sperm or with one of the many different hormones that are released post-orgasm.  I would just like to really know what hormone/hormones or if sperm is responsible for this malady.

After taking claritin my POIS has gone from extremely debilitating to just really really annoying.  I can definitely feel the reaction, it is still there, yet I feel it at a less intense rate. 

I'm thinking that another reason my POIS might have to do with a hormone released by my body is the certain pattern my POIS takes.  Starting in the back of my head going towards the front.  As it migrates towards the front of my head and the feeling slowly leaves, I seem to break out in pimples.  Possible hormone reaction?
« Last Edit: 29/03/2012 05:34:47 by GoingCrazy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15910 on: 29/03/2012 12:32:13 »
Mel (mellivora), your very sensitive, upbeat reply to each and every comment at reddit is ASTOUNDING!

http://www.reddit.com/r/IAmA/comments/rge55/i_am_a_guy_with_a_rare_sexual_illness_its_so/
You guys walk on water in my book!

Mel, CCconfucius, Nightingale, nordnurse, daveman, thank you! Thank you! Thank you!
« Last Edit: 30/03/2012 00:50:03 by demografx »

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Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15911 on: 29/03/2012 13:57:29 »
Last week I had a testosterone test when I was in abstinence from sex for almost a month,and the result was 347...again day before yesterday I got a testosterone test done on the 2nd day of pois,and the result is 658...I don't understand how come such a big fluctuation.but one thing is sure that my body is producing enough testosterone.I am so happy.

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Offline carlitto

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15912 on: 29/03/2012 15:55:50 »
Hello everyone,
  I spotted the post on reddit and my jaw dropped.  I've been unable to function normaly for many years and over time my understanding of what I have has evolved.  What I always found hard was to describe how I feel.  The way I finally described to my doctor last week instead of explaining the aches and pains I just said I basically feel like I have the flu and I'm 100% convinced it's related to ejaculation.   He was not ready to make the link because he's not aware of any such case.  I quickly browsed some posts here and I'm not sure if all my symptoms match.
Here are my symptoms
-After ejacualation I tend to get dry itchy skin on the inside of my forearms within minutes.  The more ejaculations over the course of a week I get the worst it will get until it's like dermatitis.
-Some times I'll also get itchy eyes.
-I'll crash for 4-5 days.  Day 2 and 3 being the hardest.
-My back feels inflamed and sore and dead tired.
-I get some joint pain in the back/shoulders.
-When I've crashed I dread going to sleep cause sleep is difficult as I'm restless and cant find a relaxing position. 
-I wake up feeling worst. 
-Everything feels like a chore.  I basically dont want to do anything.
-This all started after I got a mono 8 years ago or so.

What do you guys think?

I'm seeing my doctor again in a few weeks and I will definitely bring some documentation on POIS.

Funny you mention that POIS started after a mono infection (a.k.a EBV or "the kissing disease") because I have the impression that my misery also started sometime after getting EBV. In most cases ppl do not even get fever but in my case I had fever for months and had to lay in hospital for a couple of weeks. before that incident I can hardly remember having any POIS. Any comments out there?

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Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15913 on: 29/03/2012 17:08:16 »
Today is my day 1 again....day before yesterday I had an O and today again I had one...the first 2 days are always very irritating and lethargiC.I read the pois article on wikipedia.nice to see that.
« Last Edit: 29/03/2012 17:45:59 by Omen 30 »

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15914 on: 29/03/2012 19:04:36 »
Last week I had a testosterone test when I was in abstinence from sex for almost a month,and the result was 347...again day before yesterday I got a testosterone test done on the 2nd day of pois,and the result is 658...I don't understand how come such a big fluctuation.but one thing is sure that my body is producing enough testosterone.I am so happy.

Hi Omen,
Did you have the tests done at the same time of day? Testosterone normally has a daily cycle as I understand it. It peaks in the morning. I had a test later in the day once and mine was low. When I had it at 11am as the doctor recommended, it was in the upper end of the "normal" range. I still wonder a bit if mine gets to low sometimes. If your tests were done at different times of day, that might explain the difference in your results.
« Last Edit: 29/03/2012 19:06:09 by mellivora »

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Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15915 on: 29/03/2012 19:15:11 »
Hi mellivora,
I took care about the time for the tests..both the tests were done in the morning around the same time the first thing I did after I woke up...

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15916 on: 29/03/2012 19:39:17 »
I recently lowered my testosterone dosage by 1/3 and I'm still nearly POIS-free!

My hunch (just a "feeling") is that my body "adjusted" to "POIS control" somehow during my first 2 years of TRT treatment for POIS. That was at a high dose of 15mg/daily (now 10mg/day) of Androderm T-patches (Watson Pharma).

It is possible that I lost sperm count from TRT. I will never know. I should have done Semen Analysis before and after. Future experimenters should do that.

And if you are younger, this treatment means that possibly your own body's natural ability to produce testosterone might shut down if you decide to quit TRT.

Explore important fertility considerations.

If you're interested in exploring/discussing testosterone treatment for your POIS, please find a good endocrinologist.
« Last Edit: 30/03/2012 00:46:25 by demografx »

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15917 on: 30/03/2012 02:54:11 »
"Someone suggested removal of the prostate and seminal glands, wouldn't that combined with a vasectomy completely remove any ejaculate during orgasm while still allowing for orgasm? Seems less extreme than castration.
However, with the guy who did go the castration route, if he didn't not remove the prostate and was still sexually active with hormone replacement therapy, that suggests it's not a protein made in the prostate that causes this, but rather the testicles. So why don't vasectomies work?"

I got this question from someone, i think it is a good question but i dont have an answer, can someone answer it. daveman your alley

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Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15918 on: 30/03/2012 03:03:52 »
CCconfucious, here is a quote directly from Animus that answers the question:

"I speculate that sperm is one of the contributing culprits- based on the observation that my POIS improved by a factor of 20% after I eliminated sperm production.
My POIS went away 100% after I eliminated all Semen production.
It has been over 2 years since the surgery, and holding steady. I can have an O, and completely forget about it the next day.

I think it would work on other people.
However, I don't know if it would be possible to retain the testicles, and remove the other organs, and get the same results."
http://poiscenter.com/forums/index.php?topic=94.msg822#msg822
« Last Edit: 30/03/2012 03:09:07 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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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15919 on: 30/03/2012 07:35:54 »
Great job at reddit, guys. I made a username there and started
replying to comments, but it appears I can only make 1 reply
every like 10 minutes.
« Last Edit: 30/03/2012 10:34:42 by Vincent Marcus »
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15920 on: 30/03/2012 08:07:40 »
The whole Reddit thing was simply amazing (big thanks ccconfucius, mel, nordnurse, and whomever else!).  Besides the money raised and the awareness created, just reading through some of the posts has been so interesting to get perspective from outsiders.  Some of their ideas are worth following up on.
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15921 on: 30/03/2012 08:58:30 »
The whole Reddit thing was simply amazing (big thanks ccconfucius, mel, nordnurse, and whomever else!).  Besides the money raised and the awareness created, just reading through some of the posts has been so interesting to get perspective from outsiders.  Some of their ideas are worth following up on.
Great seeing the reddit post. Well done to everybody involved.

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Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15922 on: 30/03/2012 11:00:16 »
Concerning our post on reddit I think we should add links to the case studies on POIS and also say how reddit readers can find the scientific studies on POIS.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15923 on: 30/03/2012 11:51:12 »
The whole reddit posting experience has been overwhelmingly positive.
Thanks to you and the team!
The Reddit community is really dedicated to help others, we never had such a response while trying to spread the word in other forums over the net, I was pleasantly surprised. It can also be the text (or the choice of section)  because months ago some people already posted about POIS in Reddit and there wasn't a lot of comments.
http://www.reddit.com/search?q=post+orgasmic
 
« Last Edit: 30/03/2012 12:20:11 by martin88 »

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Offline Habibou

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15924 on: 30/03/2012 11:54:36 »
Great job for the Reddit !!! Would it be possible to post a link of Animus video to make it even more real? just a suggestion of course... :)

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Offline victor.kons

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15925 on: 30/03/2012 13:37:39 »
Thanks  :D  Feel all warm and fuzzy inside, and it's actually not POIS!  I actually have a personal announcement to make:  Niacin works for me.  It works WELL.  I said before that it didn't seem to work for me even though I was getting the flush.  But I was not waiting long enough after the flush to O, and for the past two weeks I've been reaping the benefits of HIGHLY reducted POIS symptoms!  It was as simple as that, get the FULL flush (face exploding kind, I need at least 500 mg at fasting to attain this, and i need 4-5 hours fasting), and wait at LEAST 20 minutes for the flush to abate.  It hasn't fully hit me, the implications of this, but it's starting to.  I'm getting a little emotional just write this...!

Near the top of my things to do with the amount of life that I will get back with this is to advocate for treatment of this illness.  I've tasted POIS freedom, and I don't want to have to deal with it ever again!  That means an even better solution than niacin flushing HAS to be found!  AND word has to spread, and it IS spreading virally like a disease! (bad analogy? =p)

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15926 on: 30/03/2012 15:06:32 »
CCconfucious, here is a quote directly from Animus that answers the question:

"I speculate that sperm is one of the contributing culprits- based on the observation that my POIS improved by a factor of 20% after I eliminated sperm production.
My POIS went away 100% after I eliminated all Semen production.
It has been over 2 years since the surgery, and holding steady. I can have an O, and completely forget about it the next day.

I think it would work on other people.
However, I don't know if it would be possible to retain the testicles, and remove the other organs, and get the same results."
http://poiscenter.com/forums/index.php?topic=94.msg822#msg822

thanks perfect answer.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15927 on: 30/03/2012 15:07:45 »
The whole Reddit thing was simply amazing (big thanks ccconfucius, mel, nordnurse, and whomever else!).  Besides the money raised and the awareness created, just reading through some of the posts has been so interesting to get perspective from outsiders.  Some of their ideas are worth following up on.

i collected some of them and will posting, we can decide which is viable.

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15928 on: 30/03/2012 22:35:27 »
The whole Reddit thing was simply amazing (big thanks ccconfucius, mel, nordnurse, and whomever else!).  Besides the money raised and the awareness created, just reading through some of the posts has been so interesting to get perspective from outsiders.  Some of their ideas are worth following up on.
Great seeing the reddit post. Well done to everybody involved.

Ditto!

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Offline silverandcol

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15929 on: 30/03/2012 23:42:47 »
Wow, congrats one the Reddit post guys.  I've been a regular redditor for over a year and I know it will make a huge impact.  It will definitely resound stronger then what we got going here.  Good job!


also if i win the lottery tonight, we will cure pois! ^^
« Last Edit: 31/03/2012 02:30:11 by silverandcol »

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15930 on: 31/03/2012 18:26:59 »
Hi Guys,

I have a question. A question what is not POIS?

In my understanding POIS is complex of weird symptoms following after orgasm and only after orgasm, e.g. you can't get those same symptoms using any different actions.

Now if some person have these symptoms after _any_ heavy physical activity and after the orgasm, will it be the POIS or not?


Victor, I like your question!!

It is a big problem that we have with POIS. We don't KNOW what is POIS and what isn't!!

One thing I've seen, and I think some others of us here, that when something like niacin comes along and you become "POIS free" it is devastatingly clear "what is POIS". Whatever isn't POIS stays behind, and you can see that secondary effects don't happen any more. All that is left is that which is NOT POIS. (More or less).

It is a privileged view. When you are "with POIS", everything is blurred, with brain fog with altered perception, you think that much of what you feel is normal or some other problem like depression or some other psychological problem. But when a simple chemical comes along and wipes it all out you see the reality.

When you have POIS, even though you may be outside of the 5 day POIS cycle, your body is still depleted, so strong exercise can weaken you and bring POIS symptoms back. But once you have had time to "heal", this effect is lesser.

I don't know, I would have to say, if you get POIS symptoms with heavy exercise (for example) and are not effected by post orgasmic cycles, that it is NOT POIS. It MAY be some other etiology that produces similar deficiencies or effects on other systems that can cause similar symptoms, but I would say that it is not POIS.

POIS is an illness caused by some anomaly provoked by an imbalance in the reproductive / ejaculatory system. That would be MY definition.

« Last Edit: 31/03/2012 22:27:58 by daveman »
How does Murphey do it??

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15931 on: 31/03/2012 18:35:10 »
Guys, sometimes I really wonder if taking all the supplements before and after sex is going to hurt us in the long term. Though for a necessary cause, we are putting the supplements in our bodies every day and producing brain chemicals as a result. We need to do this for ourselves but I hope it doesn't end up being more bad than good at the end of the day.

It seems with the niacin, viktor kons have had continuous success for more than 2 years. For me, it´s more than 6 months. I am not taking any other suplement, and of course, i don´t take niacin every day.

Plus, i would want to comment that i could have VERY VERY GOOD NEWS for our cause. I´ll be waiting more days(i am travelling, i did not expect to post during these days, but this exciting development has made me to post) to confirm you about this development, but it seems that a major newspaper in Spain is very interested in this POIS issue, and some prominent doctors are willing to investigate more on this too. I will explain this with more detail on the next days, when i could have more time.

WOW, ObserverCenter. let's hope that it leads to something great.

You never know when you do a simple thing, how it can have repercussions that continue and amplify in the benefit of the POIS community..

There will be great names in the POIS cause. Thank you all.


How does Murphey do it??

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15932 on: 31/03/2012 18:50:02 »
Although I follow in the background (due to heavy work load), getting time to really get to things and read the forum, is emotional. Great work everyone. We are HOT!

Reddit WAS and idea! Nothing more. And for a long time nobody did anything. Then Mel and CC "GOT DOWN". That's all it takes. And their names are NOW "IN THE HISTORY BOOKS" of POIS.

We can all do it. And it takes less than you can imagine for returns that are MORE THAN REAL.

If you haven't done anything, DO IT NOW.

We need you.

Thanks

Daveman
How does Murphey do it??

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15933 on: 31/03/2012 19:27:47 »

also if i win the lottery tonight, we will cure pois! ^^


silverandcol, please don't forget to save some winnings for Our First Annual POIS Retreat!



« Last Edit: 31/03/2012 20:28:01 by demografx »

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Offline lidridop

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15934 on: 01/04/2012 12:33:26 »
Hey Guys,

I log in here now & again to see updates on how everyone is getting on. Nice to see that for some, certain things have worked & they are cured of most, if not all of their symptoms. Just goes to show that it seems like an individual, case by case method might be required in the long run to solve individuals. For example, 20% of POIS cases might be solved by X, 15% by Y, 3% by Z and so on. However it's great that we're pulling together, as a group, to find the cause and solution for all of us!

From a personal point of view, I've reduced my O's to about 1 a week, and for me, that is ok - apart from some tiredness. I'm generally Ok, although I train quite a lot and I do notice a difference in performance after an O. 

However, I've been away from my girlfriend for a while. Next month, we will see each other, and of course we're going to have sex, as normal couple do. This means going from 1 Orgasm per week to perhaps 1 a day or more.  What will be interesting to see is if I will get any POIS sysmptoms, as, we will meet in a hot country for 3 weeks. In the past, being in a hot country & getting plenty of sunshine has reduced my symptons radically. I have a feeling I'm going to be in bits, and that sucks.

Honestly, this POIS thing is a pain in the neck, because it leads me to question the future viability of my relationship - I mean, if I feel like this when we live together and have regular sex, I won't be good to live with (irritable, in pain, a foggy mess, stupid!). Also, telling her how it is and depriving her on sex is not the answer, obviously! It's a bit messed up.

It would make such a difference for most of us on here if we could get this thing solved. I know we've said that hundreds of times, but I think we're going the right direction. Hope all are feeling good and POIS free today  :)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15935 on: 01/04/2012 17:21:50 »

Near the top of my things to do with the amount of life that I will get back with this is to advocate for treatment of this illness.  I've tasted POIS freedom, and I don't want to have to deal with it ever again!  That means an even better solution than niacin flushing HAS to be found!  AND word has to spread, and it IS spreading virally like a disease! (bad analogy? =p)


REALLY WONDERFUL SENTIMENTS, NIGHTINGALE!
« Last Edit: 01/04/2012 17:42:49 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15936 on: 01/04/2012 17:41:33 »
Although I follow in the background (due to heavy work load), getting time to really get to things and read the forum, is emotional. Great work everyone. We are HOT!

Reddit WAS and idea! Nothing more. And for a long time nobody did anything. Then Mel and CC "GOT DOWN". That's all it takes. And their names are NOW "IN THE HISTORY BOOKS" of POIS.

We can all do it. And it takes less than you can imagine for returns that are MORE THAN REAL.

If you haven't done anything, DO IT NOW.

We need you.

Thanks

Daveman

BEAUTIFULLY SAID, DAVE!

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Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15937 on: 01/04/2012 20:54:33 »
Demo, I directed a couple skeptical redditors to pm you for the Waldinger studies. In the future would it be okay for me to send the studies to other non-POISers who are interested in reading them? I'm not sure about the copyright issues.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15938 on: 02/04/2012 00:42:51 »
As long as they're not posted, or mass mailed -  and it's only 1:1 - I think you're ok.
« Last Edit: 02/04/2012 01:19:47 by demografx »

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Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15939 on: 02/04/2012 00:57:51 »
ok. cool.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline B_Daniel

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15940 on: 02/04/2012 03:29:42 »
Hey guys -
I reported a few weeks back that I was getting major relief with Testosterone.  I'd like to follow-up and let ya'll know that the Testosterone benefit, while very real initially, no longer helps me in a major way.  It lasted a couple weeks, or rather, 2 cycles.  I'm still experimenting with larger/smaller doses and also trying it in conjunction with other treatments, such as fish oil and whatnot.  So I haven't completely given up on it, but definitely wanted to update everyone.  My search continues... 
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15941 on: 02/04/2012 09:58:40 »
Thanks for your valor and rigorous reporting, B_Daniel!

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Offline Omen 30

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15942 on: 02/04/2012 10:42:09 »
I experienced that from the 1st day to the 7th after orgasm physical activities like cardio exercise like walking on treadmill or running or climbing lots of stairs also cause pois for me but after the 7th day these cardio exercise and any level of physical activity does not cause pois.I think the first 7 days my energy slowly keeps on increasing but not enough for the body but after the 7 th day spike the energy level is quite enough that physical activities don't drain the energy levels.I just had a month without an orgasm and I witnessed one more thing is that every 7th day after I had stopped orgasming my energy level used to increase more and more and more with no limit to it and I was loving it,but then one fine night I got an erection and I became a victim of my desire and hell broke over me and since then today is the 5 th day I am still not back to normal but everyday I am becoming better and I am waiting for the 7th day when I will be back to normal till then living a lazy life with no joy just anxietY and anxiety.

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Offline demografx

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« Last Edit: 02/04/2012 11:50:35 by demografx »

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15944 on: 02/04/2012 12:11:49 »
Hello,

I shared some of things that bring some pois relief to me (p.660). It is especially stretching, or loosening of pelvic floor and strengthening of deep abdomen muscles. I suppose tail bone is affected too.

Did anyone have similar relief through this? Is it worth exploring further?

Niacin (with flush affect) is not available in my country. Under what name is it distributed in the US?
« Last Edit: 02/04/2012 12:13:24 by Contributor »

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Offline observercenter

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15945 on: 02/04/2012 12:48:24 »
Hello,

I shared some of things that bring some pois relief to me (p.660). It is especially stretching, or loosening of pelvic floor and strengthening of deep abdomen muscles. I suppose tail bone is affected too.

Did anyone have similar relief through this? Is it worth exploring further?

Niacin (with flush affect) is not available in my country. Under what name is it distributed in the US?

Do you live in the U.S.? Then i think it would be easy for you to find niacin in your country. Vincent Marcus could help you, because he lives in the U.S., but i am buying the niacin Solgar 100 mg- A brand from the U.S., representing Nature´s bounty?- in Spain. So you could try in any Wal-mart if you are living in the U.S.

Regards

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Offline Stef

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15946 on: 02/04/2012 13:11:14 »
This quote just came my way online -- at the bottom of a patient's email. It made me immediately think of this forum --

"Alone we can do so little;
together we can do so much."

- Helen Keller

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15947 on: 02/04/2012 17:33:21 »
On reddit, I was approached by a TV producer interested in telling the story of a POIS sufferer on TV. This is not something that feels right for me to participate in at the moment so I personally am not going to do it. I suggested he make a post on our forum about it in case anyone else is interested.

If anyone decides they are interested in a TV appearance, I would advise you to contact Animus and Observercenter to see how they found the experience. Also, if you contact the TV company, ask lots of questions and make sure you are comfortable with the style, aims and audience of the programme and with how you will be portrayed. Obviously this is potentially good publicity for our cause if someone is willing and is happy with the set-up. The producer's email is brenna@trailblazerstudios.com (website: www.trailblazerstudios.com).
« Last Edit: 02/04/2012 17:39:44 by mellivora »

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Offline Contributor

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15948 on: 02/04/2012 17:48:51 »
Hello,

I shared some of things that bring some pois relief to me (p.660). It is especially stretching, or loosening of pelvic floor and strengthening of deep abdomen muscles. I suppose tail bone is affected too.

Did anyone have similar relief through this? Is it worth exploring further?

Niacin (with flush affect) is not available in my country. Under what name is it distributed in the US?

Do you live in the U.S.? Then i think it would be easy for you to find niacin in your country. Vincent Marcus could help you, because he lives in the U.S., but i am buying the niacin Solgar 100 mg- A brand from the U.S., representing Nature´s bounty?- in Spain. So you could try in any Wal-mart if you are living in the U.S.

Regards

Thanks for advice. I actually live in Europe. I will look for Solgar. Any other non time release brands available in Europe?

Someone mentioned that the most effective form of Niacin is nicotinic acid, not the nicotineamid. Does Solgar provide nicotinic acid form?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #15949 on: 03/04/2012 02:00:55 »
This quote just came my way online -- at the bottom of a patient's email. It made me immediately think of this forum --

"Alone we can do so little;
together we can do so much."

- Helen Keller


Perfect! Thanks, nordnurse!