Free Flow Discussion about POIS

[demografx]

Awaiting Stef's reply, Fidalgo.

Thank you for your patience.

[Vandemolen]

I think I know why I am bad-tempered on day 1 of POIS. I think in my case it's because of lack of sleep. The POIS makes the sleep apnea worse. Most of people who have sleep apnea are bad-tempered because of the lack of sleep.
About a few weeks my tonsils are going to be removed. I hope that I will no longer have sleep apnea. So then I hope to lose that irritability.

[demografx]

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?

Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"

[demografx]

I'd like to go in some desert island for a year and come back when we have some result from the Nord research ; )

OK BUT NOT THIS ONE!
 

[demografx]

Here's to us, to NORD and to medics who want to help us.

Thank you, guys, for being incredible teammates!

[lauracostis]

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?

Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"

We are going to need another research grant some time in the near future, one probably wont be enough

[Daveman]

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?

Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"

We are going to need another research grant some time in the near future, one probably wont be enough

Yes, and I don't think that's such a bad thing.

This first one should set us on a true road, one that should reduce or stop the widespread shooting in the dark in all directions.
I think it should also establish POIS as a real condition and give it credibility if not a solution in the eyes of the medical profession.

Much more ammunition for us to take into the doctor's office.

[Stef]

I think I know why I am bad-tempered on day 1 of POIS. I think in my case it's because of lack of sleep. The POIS makes the sleep apnea worse. Most of people who have sleep apnea are bad-tempered because of the lack of sleep.
About a few weeks my tonsils are going to be removed. I hope that I will no longer have sleep apnea. So then I hope to lose that irritability.

Hi VM (and Everyone!)

Van -- I'm sorry to hear about this sleep apnea that you're experiencing.  It's so true -- sleep apnea causes interrupted sleep -->fatigue and irritability would be natural consequences.

Also, despite the current lack of basic knowledge about POIS -- which affects people in different (and also similar) ways -- it sort of makes sense to me that POIS could worsen sinusitis.  There seems to be such an inflammatory reaction, or maybe it's an allergic one -- or a combination of both (not known yet!) --and  that if one is prone to sinusitis -- POIS would worsen it.

We're all wishing you the best with the tonsillectomy!!!!  I think you'll feel pretty sore and miserable the first week due to the surgery -- but will then start to feel much better.  Please let us know when you're going to have it done. If you've already had it done, let us know how you're doing when you feel up to it.

Most of all -- I hope it helps with the sleep apnea!!  

POIS or no POIS -- sleep apnea is a serious condition on its own, and affects general health. But fortunately it's common and can be treated.

Stef

[Vandemolen]

Thankyou Stef. I will. But al lot of people have sleep apnea but they don't know they have it. And it takes a long time before a doctor gives the diagnosis sleep apnea.

[idrink211]

Hello all, new member here.  So I just learned this syndrome this morning after make a post on Reddit that described my symptoms.  I'm rather relieved to learn that I'm not alone.  Here is the text of the post I made yesterday on Reddit for all of you to see:

I was hoping someone could help me understand what's going on chemically in my body that affects me so much after an orgasm.  These phenomena didn't happen when I was younger, but for the past few years it's been driving me nuts.

Whenever I have an orgasm the following things plague me for about 24 hours:

• A huge drop in motivation. I'll literally won't want to do anything and just want to feel normal again.  I want to stay away from people.  I don't want to talk or think.
• Trouble falling to sleep.  This might be the worst of it all.  I'll feel extremely restless.  Having an orgasm right before falling asleep is the worst.  I'm either not able to sleep or I'll have sleep starts (hypnic jerks) that wake me up in a terrifying manner.  Speaking of terrifying, my dreams are other worldly and disturbing, and when I wake up in the morning I don't feel well rested.
• Clumsiness. In addition to my lack of motivation, my coordination becomes very off.  I knock things over.  I find it more difficult to plan the sequence of physical things, like making cereal for breakfast.  You know, get the bowl, pour in milk, put milk away.  Which hand do I carry what in?  I don't know!
• Panic attacks. This kind of goes hand in hand with the inability to sleep.  I'll feel my heart beating hard in my chest.  I have to keep moving.  I feel cold and detached from my body.

Within an hour after an orgasm they're at their worst and slowly wear off after 24 hours.  Then I'm my normal self again... confident, focused, witty and relaxed with pretty much none of the problems above.

It's gotten to the point where I only want to have sex with my wife or masturbate on the weekend because I don't want to feel like this at work.

Just this past Sunday my wife and I had really good sex before bed.  We cleaned up and passed out quickly.  Then I had this sleep start that shook the bed.  My wife asked if I was OK.  Our one year old had trouble sleeping through a lot of the night.  So I ended up getting only a few hours sleep and they were not good ones (bad dreams).  The following day (yesterday) I was a wreck at work.  A lack of sleep makes these symptoms even worse.

Like I said, this didn't happen in my teens and twenties, which happened to be a time when I masturbated a lot and had sex whenever I could.  In my 30s though, I've had to cut back because it really fucks me up.

Can anyone shed some light?

TL;DR - After having an orgasm I feel unmotivated, clumsy, nervous and have trouble sleeping for about a day.  WTF is going on with my body?

After learning that this is an actual syndrome I'm totally abstaining from sex and masturbation until further notice.  I've never had a true nocturnal emission in my life because I've always masturbated regularly.  So I'm not sure if I should be worried about that.  I am worried about how my wife will react to this though.

I'm amazed that some of you deal with these symptoms for multiple days.  For me, I'm the worst for about 24 hours and then pretty much normal but not 100%.  After two full days I'm cured for sure.

Well, nice to meet you all.

[Vincent M]

It's a pleasure to have you with us, idrink211.

The things that I've found to help my cognitive problems during POIS the most are fenugreek+tea/garlic, huperzine, and ginkgo biloba. Niacin seems to have been effective for more of us though(flush required).

[demografx]

Welcome, idrink211! Please see our Welcome Post for resources for you:
http://poiscenter.com/forums/index.php?topic=1.msg1#msg1

[demografx]

Fidalgo and others!

Donations are still good thru March 22, 2013!!

It will help!

And after that?

Fidalgo: from our correspondence about your question:

Daveman: "They go into into a continuing fund right? We'd have to go for a 2nd $33.5K"

nordnurse: "Yes.  If they want to continue donating [after March 22, 2013], their donations could go toward a second grant for next March (unless someone comes up with $33.5K next week).

Stef"

We are going to need another research grant some time in the near future, one probably wont be enough

Yes, and I don't think that's such a bad thing.

This first one should set us on a true road, one that should reduce or stop the widespread shooting in the dark in all directions.
I think it should also establish POIS as a real condition and give it credibility if not a solution in the eyes of the medical profession.

Much more ammunition for us to take into the doctor's office.

Yes. And so far, we have accomplished the HARDest part:

Getting the very FIRST Grant!!

[demografx]

Just donated $250...Plan to do it again.

Thank you, bjameshill!

[Clycos]

Hello! I would like to know where I can go to donate money; and also if someone can tell me how come Post Orgasmic Illness Sydnrome is not in the rare diseases database in the rarediseases.org website? Thank you.

[LAPOISSE]

There is 640 members here. The community is growing up. I think we need to keep communicate about POIS. The more we are, the most we have chance to get attention on our condition.

[Daveman]

There is 640 members here. The community is growing up. I think we need to keep communicate about POIS. The more we are, the most we have chance to get attention on our condition.

Especially as the research activity starts to develop.

I'm sure that our forum would have to be one of the principal places researchers go to find information that would be difficult to get other places. Of course it is not controlled information, but it is very good referential information.

And at the same time, new members just finding out about POIS for the first time, may find benefit and can start connecting to a real direction.

[Daveman]

Hello! I would like to know where I can go to donate money; and also if someone can tell me how come Post Orgasmic Illness Sydnrome is not in the rare diseases database in the rarediseases.org website? Thank you.

Here is the link for donating!

http://poiscenter.com/forums/index.php?topic=173.msg1750#msg1750

And we are on the NORD Database I'll have to find you the link....

[demografx]

[Clycos], we are on the NORD Database I'll have to find you the link....

http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail

[demografx]

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