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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6451652 times)

Offline Vincent M

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« Reply #14750 on: 08/10/2011 01:34:24 »
I spotted a case report in the BMJ - http://casereports.bmj.com/content/2010/bcr.10.2009.2359.abstract - about a guy whose sex headaches go away whenever his wife gets pregnant, so his doc gives him a progestogen pill & it works in between pregnancies. I start using progesterone cream - it seems to work, but I've been here before...
 I bought the full text, it makes very interesting reading. His headache relief matches up with typical female progesterone (P4) production during pregnancy, ie from 8 weeks after conception until delivery - so it seems it's definitely the P4 that's helping.

in between two pregnancies, he persuades his doc to prescribe him  P4 pills after trying 8% progesterone cream rubbed into the top lip and nostrils - which doesn't work - and another drug, the dopamine agonist bromocriptine, which also fails. The actual drug he gets is norethisterone, used in contraceptive pills. He takes one (5mg) about 30 mins before sex, and gets 95% relief from pain. Sometimes he waits, and takes 10mg a few minutes after sex, ie in the 20-minute window before the headache starts, and gets 100% relief!

 He took the oral norethisterone for about 9-10 months, seemed to tolerate it well, didn't seem to suffer side-effects and had relief from his other symptoms as well as the headaches. They tested his progesterone levels during his wife's second pregnancy - ie while he wasn't taking the pills - but didn't find them raised above the normal range for a male.

I'm still working out the implications of this, but one thing seems clear: the cream doesn't necessarily work, at least not for everyone. But the finger of causation - or at least, a finger - is still pointed squarely at the body's endocrine functions.

Progesterone looks interesting: I looked through the forum history a bit and found that Limejuice(a member here) at one time claimed to be about 50% cured with progesterone(Norethisterone). However he said it only helped with his headaches and also that when he took it everyday he gained lots of weight. Also that it didn't resolve his food sensitivity to carbohydrates while in POIS. I believe he was taking .35mg when he took it once per day and 10mg to 15mg when he was taking it per orgasm.
« Last Edit: 08/10/2011 01:37:17 by Vincent Marcus »
 

Offline GoingCrazy

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« Reply #14751 on: 09/10/2011 00:53:11 »
Can someone please explain Niacin is it just a B-complex vitamin being taken?

Niacin is a single b-vitamin. It is vitamin B3. It appears that there are various forms which have been working to reduce POIS symptoms and you can read this thread on the other forum for that information:

http://poiscenter.com/forums/index.php?topic=174.0

The bottle of pills that I bought is simply labeled "Niacin 100mg". Taking two of these pills does the trick for me.

ok so you are basically getting a dose of 200mg

I have a b complex vitamin that contains 50 mg of B3, but only am taking two, I've experimented with B's before and the overall impact it had on me was positive, although lasting for a relatively short duration.  I believe it increases the circulation and production of a certain neurochemical that makes us feel better.
« Last Edit: 09/10/2011 00:55:15 by GoingCrazy »
 

Offline GoingCrazy

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« Reply #14752 on: 09/10/2011 01:10:39 »
I've recently been experimenting with melatonin, the chemical your brain naturally produces to help you fall asleep, and have had surprisingly good results.

http://www.walmart.com/ip/Natrol-Melatonin-Fast-Dissolve-Flavor-5-Mg-Tablets-Dietary-Supplement-90-Ct/15136704

^ the product I am using

After O'ing three times the previous night, I took just one pill of melatonin and had some deeply restful sleep.  Usually I have nightmares on day 0 of POIS.  Funny my last dream I had in POIS some guy was telling me that I should O 3 times per 2 weeks.  Lol really weird.  But today I could say I really haven't been in a better mood. Very productive at work (I work saturdays, college student). 

Also, I can say that I recently took two lexapro over two days that were prescribed to me a while ago by my doctor.  All I can say is that didn't work at all and did not help sleep.  This is definitely not depression.  I thought it would help me sleep because I had good experience with nutmeg (not recommended and potentially harmful) known for it's "antidepressant" affects and help with sleep, I wouldn't be surprised if my post is edited for just bringing that up.
« Last Edit: 09/10/2011 16:57:33 by demografx »
 

Offline B_Daniel

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« Reply #14753 on: 10/10/2011 02:58:54 »
I don't donate because even with all the hard core POIS advocates donating/knowing about it, we're only in about 10%.  I also am wary of NORD and people asking me for money but I'm paranoid.  If we were a lot closer I'd consider it. 

However if someone did come up with a cure and charged 20 grand for it, I'd sign up tomorrow.

If you're willing to pay $20K for a cure, what are you willing to pay for a chance for a cure, a guaranteed step towards the cure, and a significant increase in awareness about this syndrome in the medical community? 

Look, we're in a tough position.  We've got to raise $33K and if we don't raise it by March we've got to wait another YEAR for the next grant cycle.  It would be a tragedy to have to wait another year.  Apostate, what if you were willing to donate, I was willing to donate, and another 75 people were willing to donate, but none of us did bc we all thought nobody else was going to.  It'd be very unfortunate.  We've got a lot of serious donators here.  I'm going to put up $5,000 myself, and Demografx, Daveman, Limejuice, Rock27, Green, EDS, Habibou, Counterpoints, Jivetalk, Ccconfucius, rjmlr, devastated, rob58, Observer, and Mellivora have also made large pledges to donate.  We've got some serious fire-power here, but we've got to get rid of this minor roadblock.   

What I would like is for everyone that would donate if not for the $33K roadblock to please search within yourself and put a price on what you think this research is worth to you in terms of what you can afford.  And make a conditional pledge to the group for that amount.  For instance, EDS has said he will pledge $100 for every $3350 that is donated (perhaps even more now).  I've set a similar schedule for myself.  Others have said that they will donate their pledge as soon as the total pledge amount reaches $33.5K. 

We can either work together to defeat pois, or we can waste away the rest of our lives struggling at work and at social events, and never living up to our full potential.  I look at the great things that Steve Jobs did over his lifetime, and how he was the absolute master of his time here.  We're simply not in control of our lives, and in many aspects we live lives of mediocrity.  It sucks to be so blunt but saying it any other way is just beating around the bush.  If you're not willing to make the leap of faith on the fund, atleast give the fund some faith, and make a conditional pledge.  By now it should be clear that every individual pledge goes a long way.  Thank you all.
 

Offline B_Daniel

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« Reply #14754 on: 10/10/2011 03:06:41 »
Apostate, to clarify, my post wasn't meant to single you out at all.  In fact, i greatly appreciate your condor! 
 

Offline Stef

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« Reply #14755 on: 10/10/2011 12:43:27 »
Hi All,

There are more than a few ways to raise funds for your grant, that will also allow for anonymity.

The first one that comes to mind is selling on Ebay -- people will buy almost anything!  There would be no need to mention POIS -- you can just sell -- then donate it to your fund.

Perhaps a thread on SMF (Daveman??) for fund raising ideas might be helpful. The anonymity makes it all more challenging -- but not impossible.

There are several other rare disorders with a major personal element to them. I know that those afflicted would rather not go public with this disorder. Yet the groups have successfully raised the funds.
 
Trimethylaminuria is a perfect example (you'll need to google it). This relatively small group of individuals has done what they set out to do in one year's time. NORD is in the middle of our current research cycle and there they are in there, full force ahead.  They will soon be one step closer to finding a treatment (or a cure)!  This group does not even have a website or a forum site.  You men have TWO forums, with ultra-dedicated moderators!

FYI, trimethylaminuria is an intensely personal disorder. I'll send one of my contacts there an email to ask how they raised their funds.  If there is something to relay back to you, I definitely will.

Think positive -- raising these funds is a 100% realistic goal. :-)
 

Offline Quasar

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« Reply #14756 on: 10/10/2011 14:40:57 »
I've recently been experimenting with melatonin, the chemical your brain naturally produces to help you fall asleep, and have had surprisingly good results.

http://www.walmart.com/ip/Natrol-Melatonin-Fast-Dissolve-Flavor-5-Mg-Tablets-Dietary-Supplement-90-Ct/15136704

^ the product I am using

After O'ing three times the previous night, I took just one pill of melatonin and had some deeply restful sleep.  Usually I have nightmares on day 0 of POIS.  Funny my last dream I had in POIS some guy was telling me that I should O 3 times per 2 weeks.  Lol really weird.  But today I could say I really haven't been in a better mood. Very productive at work (I work saturdays, college student). 

Also, I can say that I recently took two lexapro over two days that were prescribed to me a while ago by my doctor.  All I can say is that didn't work at all and did not help sleep.  This is definitely not depression.  I thought it would help me sleep because I had good experience with nutmeg (not recommended and potentially harmful) known for it's "antidepressant" affects and help with sleep, I wouldn't be surprised if my post is edited for just bringing that up.


GoingCrazy, have you tried taking it before having an O?

Have you tried melatonin more than once?

I find it interesting, because when i'm under Pois, i lose the "sleepy feeling" i should feel at night. I mean, under Pois i always feel tired, but i don't feel that -sometimes pleasant- sleepy feeling at nights.

So, does melatonin help you to recover that feeling? Or does it just help sleeping better?

thx
 

Offline Itsthatskater

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« Reply #14757 on: 10/10/2011 21:32:22 »
Hello again everyone, Sorry for the inactivity in the past week

Doctors appointment went good,
They said Niacin is a good way to attempt to treat this illness, I gave them the name of the Ilness and they said they will research and let me know if the upcoming months ahead. I will be sure to let you all know whatever is figured out.
 

Offline Vincent M

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« Reply #14758 on: 10/10/2011 23:52:12 »
that's good news, Itsthatskater. At least they didn't accuse you of it all being in your head like a lot of doctors do.
 

Offline demografx

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« Reply #14759 on: 11/10/2011 02:53:55 »
The POIS Research Fund For 2012 Progress CURE!



[B_Daniel is] going to put up $5,000, and Demografx, Daveman, Limejuice, Rock27, Green, EDS, Habibou, Counterpoints, Jivetalk, Ccconfucius, rjmlr, devastated, rob58, Observer, and Mellivora have also made large pledges to donate. 







Great going, guys!!!



« Last Edit: 11/10/2011 03:14:04 by demografx »
 

Offline demografx

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« Reply #14760 on: 11/10/2011 03:18:44 »

I don't donate because even with all the hard core POIS advocates donating/knowing about it, we're only in about 10%.  I also am wary of NORD and people asking me for money but I'm paranoid.  If we were a lot closer I'd consider it. 

However if someone did come up with a cure and charged 20 grand for it, I'd sign up tomorrow.



Apostate801,

I think this is the cure of which you speak!
And for a lot less than $20,000 out of your pocket!
That is the great thing about this opportunity - we can collectively donate a fraction of that amount and have world class scientists working on OUR specific illness.

WE MUST DO THIS!!

This is our self test. Our moment in time. Our time to have some faith in people that are trained to help people like us.
You know the old saying "It's time to stop talking and take action".
I am not advocating that we stop talking, but certainly, it IS time to take action!!

Also, if I remember correctly, NORD did not solicit money from us in the beginning... we asked them for help.

I know there may be some of us that cannot afford to contribute, but looking at the list of professions, it seems to me that most of us are fairly well compensated and could spare $50 or more.
Can we not forgo a dinner out, a sitting at a casino, one concert, one fishing trip, etc, (you get the point), to greatly improve our odds of managing this malady?
It may be something very simple, but we will never know if we don't get professional help!

Sorry for the rambling, but this seems like such a no brainer! A small sacrifice when approached collectively!

I feel so strongly about this opportunity, I am willing to donate more than my original pledge of $1000 to help offset the few that truly cannot afford to give.

Everyone here - please take a leap of faith and donate!!!!!



red emphasis mine - demo
« Last Edit: 11/10/2011 03:25:10 by demografx »
 

Offline demografx

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« Reply #14761 on: 11/10/2011 03:30:26 »

I don't donate because even with all the hard core POIS advocates donating/knowing about it, we're only in about 10%.  I also am wary of NORD and people asking me for money but I'm paranoid.  If we were a lot closer I'd consider it. 

However if someone did come up with a cure and charged 20 grand for it, I'd sign up tomorrow.



If you're willing to pay $20K for a cure, what are you willing to pay for a chance for a cure, a guaranteed step towards the cure, and a significant increase in awareness about this syndrome in the medical community? 

Look, we're in a tough position.  We've got to raise $33K and if we don't raise it by March we've got to wait another YEAR for the next grant cycle.  It would be a tragedy to have to wait another year.  Apostate, what if you were willing to donate, I was willing to donate, and another 75 people were willing to donate, but none of us did bc we all thought nobody else was going to.  It'd be very unfortunate.  We've got a lot of serious donators here.  I'm going to put up $5,000 myself, and Demografx, Daveman, Limejuice, Rock27, Green, EDS, Habibou, Counterpoints, Jivetalk, Ccconfucius, rjmlr, devastated, rob58, Observer, and Mellivora have also made large pledges to donate.  We've got some serious fire-power here, but we've got to get rid of this minor roadblock.   

What I would like is for everyone that would donate if not for the $33K roadblock to please search within yourself and put a price on what you think this research is worth to you in terms of what you can afford.  And make a conditional pledge to the group for that amount.  For instance, EDS has said he will pledge $100 for every $3350 that is donated (perhaps even more now).  I've set a similar schedule for myself.  Others have said that they will donate their pledge as soon as the total pledge amount reaches $33.5K. 

We can either work together to defeat pois, or we can waste away the rest of our lives struggling at work and at social events, and never living up to our full potential.  I look at the great things that Steve Jobs did over his lifetime, and how he was the absolute master of his time here.  We're simply not in control of our lives, and in many aspects we live lives of mediocrity.  It sucks to be so blunt but saying it any other way is just beating around the bush.  If you're not willing to make the leap of faith on the fund, atleast give the fund some faith, and make a conditional pledge.  By now it should be clear that every individual pledge goes a long way.  Thank you all.


« Last Edit: 11/10/2011 04:15:34 by demografx »
 

Offline demografx

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« Reply #14762 on: 11/10/2011 04:09:18 »
I hereby now pledge another $750 $1,000.

It is my personal acknowledgement to EDS' and to B_Daniel's pleas.

To those still reluctant but capable: if POIS took the "social" out of you, like it did to me for many years, come on and join in with us just this once....FOR YOURSELF!! (This is your BEST shot at....a NEW LIFE!!!! Come on!!!)

« Last Edit: 13/10/2011 03:13:39 by demografx »
 

Offline demografx

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« Reply #14763 on: 11/10/2011 04:27:29 »

Hi All,

There are more than a few ways to raise funds for your grant, that will also allow for anonymity.

The first one that comes to mind is selling on Ebay -- people will buy almost anything!  There would be no need to mention POIS -- you can just sell -- then donate it to your fund.

Perhaps a thread on SMF (Daveman??) for fund raising ideas might be helpful. The anonymity makes it all more challenging -- but not impossible.

There are several other rare disorders with a major personal element to them. I know that those afflicted would rather not go public with this disorder. Yet the groups have successfully raised the funds.
 
Trimethylaminuria is a perfect example (you'll need to google it). This relatively small group of individuals has done what they set out to do in one year's time. NORD is in the middle of our current research cycle and there they are in there, full force ahead.  They will soon be one step closer to finding a treatment (or a cure)!  This group does not even have a website or a forum site.  You men have TWO forums, with ultra-dedicated moderators!

FYI, trimethylaminuria is an intensely personal disorder. I'll send one of my contacts there an email to ask how they raised their funds.  If there is something to relay back to you, I definitely will.

Think positive -- raising these funds is a 100% realistic goal. :-)



Stefanie (aka "nordnurse"), you have inspired The POIS Community far more and better than if we had had Mother Theresa as a contributing forum member!
 

Offline prister

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« Reply #14764 on: 11/10/2011 10:14:09 »
What about rejuneuron?
Isn't that helping people?
I feel, isn't fatigue and brainfog due to deficiency in vitamin-B complex?
Also might be due to decrease in zinc level?
Memory loss and nocturnal emissions due to increase in cortisol levels in blood?
I am sure now that i might not have brain aneurysm or hematoma..!
I don't think i have migraine too but POIS itself creates headache and brainfog and causes numbness in my head..!
Nowadays i get blurred vision too..!
Hasn't Doctor Waldinger found out medication for it?
« Last Edit: 12/10/2011 00:02:44 by demografx »
 

Offline Vincent M

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« Reply #14765 on: 11/10/2011 13:00:54 »

Hasnt doctor waldinger found out medication for it????

Nothing concrete it seems, but we've found multiple things that help to reduce our POIS symptoms. Have you tried niacin, fenugreek, garlic, saw palmetto, or relora for example?

Here is a site we made to record the most beneficial treatments we've found:

https://sites.google.com/site/poiswebsite/test-page/successful-methods

It is also located in the welcome email demo sent you. You should read through the info in that email because there is other helpful info as well including which of our members have been cured and how and which members have reduced their symptoms and how.

 

Offline CertainlyPOIS

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« Reply #14766 on: 11/10/2011 17:26:47 »
I have created a thread in other forum under fundraising for bringing ideas together for raising money. Everyone is welcomed to come share their ideas.
 

Offline Defsync

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« Reply #14767 on: 12/10/2011 08:45:42 »
 

Offline Vincent M

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« Reply #14768 on: 12/10/2011 17:39:36 »
interesting Defsync. I found another interesting link off of the one you gave. It's about a condition where a person gets amnesia after sex:

http://io9.com/5848936/the-strange-case-of-the-woman-who-lost-her-memory-after-sex
 

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« Reply #14769 on: 12/10/2011 19:04:17 »
I did speak with Dr. Waldinger and he said he is not taking any patients.  He has a backlog of potential patients for new studies and didn't want to put me on the list (I'm in the U.S.)  He suggested keep trying to find someone in the U.S. 

I've also tried getting an appointment with Dr. Bewtra, but I've not been successful.  I was told by the office today that there has been some discussion about POIS among the physicians but it seems they're still not sure what they will do with the patients interested in getting diagnosed/treated.

Has anyone here had ANY luck with finding someone to perform a diagnosis (particularly allergy skin testing) and treatment?  I'm having a really hard time finding anyone.  I talked to the heads of Johns Hopkins rheumatology and allergy departments and they've never heard of POIS and aren't offering diagnosis or treatment.  Maybe we should all start reaching out to the heads of allergy of each of the major medical schools.  I'm sure we'll find someone who will be interested.
 

Offline Quasar

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« Reply #14770 on: 12/10/2011 22:23:47 »
interesting Defsync. I found another interesting link off of the one you gave. It's about a condition where a person gets amnesia after sex:

http://io9.com/5848936/the-strange-case-of-the-woman-who-lost-her-memory-after-sex

Very interesting. In fact, i'm quite surprised that nearly nobody of us have been undergone to a carotid ultrasonography, I mean, we have gone to lots of neurologists, presenting quite severe symptoms. I wonder why, even if some of us are young people, those neurologists haven't done this test with more frequency.

It's quite deceiving that i wanted they to give a check to my temporal artery, because many times it looks inflamed, and they told me to go to a cardiologist!! And the cardiologist told me to go to the neurologist...

I think they don't take us seriously.
 

Offline Quasar

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« Reply #14771 on: 12/10/2011 22:28:43 »
the cure you seek may lay with this research:

http://io9.com/5848745/scientists-figure-out-how-to-switch-off-peanut-allergy

We should send this to Waldinger. It looks more effective and faster that the classic desensitization.
 

Offline B_Daniel

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« Reply #14772 on: 13/10/2011 03:05:00 »
Demo - Haha, if you could just cut your concert budget by another $20,315 we'd be there!
 

Offline demografx

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« Reply #14773 on: 13/10/2011 03:16:49 »

B_Daniel!.....hmmmm!......never thought of it THAT way! Brilliant!!  ;D
 

Offline demografx

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« Reply #14774 on: 13/10/2011 03:19:05 »
BTW, see what power my little 250 boost had! It pushed the pledges from 4-figures to 5!

Every little bit counts!!
 

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