Post Orgasmic Illness Syndrome (POIS)

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

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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 »

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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 »

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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.
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 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! 
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 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. :-)

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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

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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.

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

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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 »

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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 »

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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 »

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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 »

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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!

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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 »

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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.

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

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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.

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Offline Defsync

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

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

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Offline pois1

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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.

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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.

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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.

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

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

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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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Offline Alexander Russian

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« Reply #14775 on: 13/10/2011 06:13:43 »
I think, dear friends, POIS it ANAPHYLACTIC SHOCK by allergic reaction to own semen. It is enough to look at symptoms - they are very similar. At us in Russia is a lot of patients POIS. Thanks for attention!

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Offline victor.kons

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« Reply #14776 on: 13/10/2011 12:31:22 »
Alexander is an active participant of russian Syndrom X blog. Recently he wrote a post where he explains that there are huge similarities in symptoms of POIS and Anaphylactic Shock. He also mentions that his mother had an allergic reaction to the sperm of his father.

The post of Alexander in russian is located here:
http://syndrom-x.blogspot.com/2011/10/blog-post.html

Victor

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Offline Vincent M

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« Reply #14777 on: 13/10/2011 16:34:30 »
POIS being anaphylactic shock is an interesting idea. I wonder if anyone with POIS has tried epinephrine after an orgasm to see if it lessens symptoms since epinephrine is given to people in anaphylactic shock.

EDIT- I did an advanced google search for "epinephrine" in this forum and found a lot of discussion about epinephrine levels in the body possibly triggering POIS or being involved in some way, but I found nothing about anyone taking epinephrine in an effort to reduce symptoms.
« Last Edit: 13/10/2011 17:33:46 by Vincent Marcus »
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline Habibou

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« Reply #14778 on: 13/10/2011 19:05:34 »
Many thanks Demo for this important pledge !!! :)

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Offline demografx

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« Reply #14779 on: 13/10/2011 20:02:02 »
You're welcome, Habibou!

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Offline DrDemasi

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« Reply #14780 on: 14/10/2011 01:51:08 »
Hi John,  I am an Australian medical researcher turned medical journalist with ABC TV and I am doing a documentary about sex/sexual function etc.  I am interviewing Dr Waldinger in the Netherlands about POIS and would like someone to talk about their experience with the condition.  Is that something you would be interested in?  If not, do you know anyone who would be willing to be a part of our science documentary exploring the condition & treatments? Are you based in Europe?
Dr Maryanne Demasi
Producer/Reporter
ABC TV Australia

(After writing this post and registering I noticed that the forum rules specify no sexual content. I was going to stop, but I did a search and found another post about it. I hope this type of discussion won't be deemed inappropriate.)


Hi. I would like to relate my very personal story of an unusual condition that I have been plagued with. Ever since puberty I have had serious problems in the days immediately following ejaculation. My first symptom was acute back pain in the days following, at whatever age it was, perhaps around 14. After a few years it changed to an impaired cognitive condition, which I would describe as definite mental illness, in which thinking becomes very difficult, and it feels horrible in a way that can not be described. I'm sure specific neurotransmitters are depleted or something, but the cause of such a reaction is what I have never been able to understand. This has occurred following both nocturnal emissions and sexual activity. To minimize the problem I am not sexually active and try to avoid nocturnal emissions.


John 


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Offline DrDemasi

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« Reply #14781 on: 14/10/2011 01:54:46 »
Hi,  I am an Australian medical researcher turned medical journalist with ABC TV and I am doing a documentary about sex/sexual function etc.  I am interviewing Dr Waldinger in the Netherlands about POIS and would like someone to talk about their experience with the condition.  Is that something you would be interested in?  If not, do you know anyone who would be willing to be a part of our science documentary exploring the condition & treatments? Are you based in Europe?
Dr Maryanne Demasi
Producer/Reporter
ABC TV Australia
demasi.maryanne@abc.net.au




You're welcome, Habibou!

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Offline GoingCrazy

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« Reply #14782 on: 14/10/2011 02:43:34 »
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

Same as me.  In POIS I get an agitated all night feeling of restlessness and irritability, than usually by the next night it is gone.  My experiences with melatonin is that when I did take it in POIS, I had good results and although I wouldn't say it is the cure, it has definitely helped me.  I didn't take it last night,(I O'd yesterday) and feel a lot worse today than when I did take it.  I know the "sleepy feelings" at night you talk about, I wish I could go back to the days I didn't have this.

My stages in POIS:
1) very hyper, cannot calm down.  (sometimes I skip this phase directly into phase 2)
2) very anxious, high nervousness, terrible mood
3) headache begins in back of head
4) headache moves towards the front of head
5) POIS dissappears sometime during the night (would I dare say entirely? nope)

No success with advil, only success with nutmeg, melatonin, and caffeine.  I still am awaiting to be put on migranal, helps with these headaches after orgasm, supposedly it did last time.

I believe and I hope that POIS is a lot simpler than what we make of it, at least my pois.  Why certain things like caffeine and nutmeg help me?  Possible over-inflammation?  I hope so.  Sounds a lot better than a sperm allergy. 
« Last Edit: 14/10/2011 02:53:53 by GoingCrazy »

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Offline demografx

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« Reply #14783 on: 14/10/2011 05:31:27 »

Why certain things like caffeine...help me?


Caffeine and ADHD-stimulants like Ritalin help me, too. Other people here have reported adverse effects. I can't wait to get my hands on some solid NORD Research to shed more serious light on this pathetic routine of ours called POIS!





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Offline Itsthatskater

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« Reply #14784 on: 14/10/2011 06:10:48 »
Hey guys,
Im doing the best i can research wise and getting the word out there that we have a relatively unknown ilness are we arent messing around!

I just hope that by the time I have kids of my own, This ilness will be cured, I always wondered if this would affect your ability to have kids. Hm.

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Offline demografx

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« Reply #14785 on: 14/10/2011 16:28:11 »

I think, dear friends, POIS [is] ANAPHYLACTIC SHOCK by allergic reaction to own semen. It is enough to look at symptoms - they are very similar. At us in Russia is a lot of patients POIS. Thanks for attention!



Alexander is an active participant of russian Syndrom X blog. Recently he wrote a post where he explains that there are huge similarities in symptoms of POIS and Anaphylactic Shock. He also mentions that his mother had an allergic reaction to the sperm of his father.

The post of Alexander in russian is located here:
http://syndrom-x.blogspot.com/2011/10/blog-post.html

Victor




POIS being anaphylactic shock is an interesting idea. I wonder if anyone with POIS has tried epinephrine after an orgasm to see if it lessens symptoms since epinephrine is given to people in anaphylactic shock.

EDIT- I did an advanced google search for "epinephrine" in this forum and found a lot of discussion about epinephrine levels in the body possibly triggering POIS or being involved in some way, but I found nothing about anyone taking epinephrine in an effort to reduce symptoms.



When I showed this to a friend who practices pharmacology law, he said, "Epinephrine is not something that should be played with. POIS is not anaphylactic shock. Good way to [You can] precipitate a hypertensive or cardiac episode if you take epinephrine and don't need it. Anaphylactic shock is usually fatal if not treated in time. People who are allergic to bee stings carry an epi-pen around with them [epinephrine]. If they're stung and don't get treatment, they could die. If POIS was anaphylactic shock, there wouldn't be too many of you left!!! "

THANK YOU, MY FRIEND!! - demo

mod edit - bold emphases above are mine.

« Last Edit: 14/10/2011 18:32:13 by demografx »

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Offline demografx

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« Reply #14786 on: 14/10/2011 16:48:35 »
Alexander Russian, 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 file for that TV documentary, "Desperate Measures", which can be downloaded and played. The segment starts at about 12:20..
http://www.fileserve.com/file/cUtJa9R/TITLE01.mp4

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'! "

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable 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: 14/10/2011 16:52:45 by demografx »

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Offline Willem

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« Reply #14787 on: 14/10/2011 17:21:11 »
I just hope that by the time I have kids of my own, This ilness will be cured, I always wondered if this would affect your ability to have kids. Hm.
Hi Itsthatskater, Just FYI, a few of us in the community have kids and POIS has not been an issue in that department.  It would be nice to do a more comprehensive survey, but the wife and I have three healthy kids and have not had problems getting pregnant (thankfully!). 

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Offline Willem

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« Reply #14788 on: 14/10/2011 17:22:31 »

I think, dear friends, POIS it ANAPHYLACTIC SHOCK by allergic reaction to own semen. It is enough to look at symptoms - they are very similar. At us in Russia is a lot of patients POIS. Thanks for attention!



Alexander is an active participant of russian Syndrom X blog. Recently he wrote a post where he explains that there are huge similarities in symptoms of POIS and Anaphylactic Shock. He also mentions that his mother had an allergic reaction to the sperm of his father.

The post of Alexander in russian is located here:
http://syndrom-x.blogspot.com/2011/10/blog-post.html [nofollow]

Victor




POIS being anaphylactic shock is an interesting idea. I wonder if anyone with POIS has tried epinephrine after an orgasm to see if it lessens symptoms since epinephrine is given to people in anaphylactic shock.

EDIT- I did an advanced google search for "epinephrine" in this forum and found a lot of discussion about epinephrine levels in the body possibly triggering POIS or being involved in some way, but I found nothing about anyone taking epinephrine in an effort to reduce symptoms.



When I showed this to a friend who practices pharmacology law, he said, "Epinephrine is not something that should be played with. POIS is not anaphylactic shock. Good way to [You can] precipitate a hypertensive or cardiac episode if you take epinephrine and don't need it. Anaphylactic shock is usually fatal if not treated in time. People who are allergic to bee stings carry an epi-pen around with them [epinephrine]. If they're stung and don't get treatment, they could die. If POIS was anaphylactic shock, there wouldn't be too many of you left!!! "

THANK YOU, MY FRIEND!! - demo

mod edit - bold emphases above are mine.



Thanks for researching this Demo!  We appreciate you looking out for the community. 

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Offline Alexander Russian

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« Reply #14789 on: 14/10/2011 17:33:03 »
Demografx, thanks for a greeting and for the helpful information. I will keep you informed if there will be an advancement in treatment. One more my idea why so it is a lot of cases POIS (at your forum 10000 persons and at us not less than 100) in that as cases the ALLERGY TO A SEMEN of the concrete partner among women too are registered much enough and MY MOTHER had an allergy to a semen of my father, which was probably descended to me - with that difference that at me an allergy to my semen. Thanks for attention friends!


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Offline Alexander Russian

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« Reply #14790 on: 14/10/2011 17:54:44 »
Sorry, am necessary the small explanatory: I speak about cases when women can't pregnancy because of that that at them antibodies (on allergen arriving in their organism - a semen) killing spermatozoons of the concrete partner. And pregnancy probably only with the help mechanically methods (this diagnosis was at my mother). It is all.
« Last Edit: 14/10/2011 18:00:15 by Alexander Russian »

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Offline demografx

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« Reply #14791 on: 14/10/2011 18:37:07 »

Demografx, thanks for a greeting and for the helpful information. I will keep you informed if there will be an advancement in treatment. One more my idea why so it is a lot of cases POIS (at your forum 10000 persons and at us not less than 100) in that as cases the ALLERGY TO A SEMEN of the concrete partner among women too are registered much enough and MY MOTHER had an allergy to a semen of my father, which was probably descended to me - with that difference that at me an allergy to my semen. Thanks for attention friends!


Welcome again, Alexander Russian!

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Offline Vincent M

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« Reply #14792 on: 14/10/2011 21:49:15 »
Yeah Demo you're right POIS isn't anaphylactic shock. I was just tryin to to think outside the box cuz I thought perhaps POIS is a mild form of anaphylactic shock, but I was way off target. And yeah epinephrine is extremely dangerous and possibly fatal if you don't need it.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline GoingCrazy

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« Reply #14793 on: 14/10/2011 21:52:03 »

Why certain things like caffeine...help me?


Caffeine and ADHD-stimulants like Ritalin help me, too. Other people here have reported adverse effects. I can't wait to get my hands on some solid NORD Research to shed more serious light on this pathetic routine of ours called POIS!






I actually could not fall asleep at all last night and I took some Goody's headache relief medication found at wal-mart at around 6 in the morning.  It contains caffeine and aspirin.  And what do you know I fell fast asleep and the ache in my head was gone.  I had such a good 3 hours rest after that and actually felt tired and had a pleasant dream, + the fog in my head was gone.  I might try it daily.  I think my body might actually need caffeine to function at full capacity without the aches, pain, anxiousness in my head.  That medication actually really helped my POIS.

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Offline Vincent M

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« Reply #14794 on: 14/10/2011 21:54:29 »
Hi,  I am an Australian medical researcher turned medical journalist with ABC TV and I am doing a documentary about sex/sexual function etc.  I am interviewing Dr Waldinger in the Netherlands about POIS and would like someone to talk about their experience with the condition.  Is that something you would be interested in?  If not, do you know anyone who would be willing to be a part of our science documentary exploring the condition & treatments? Are you based in Europe?
Dr Maryanne Demasi
Producer/Reporter
ABC TV Australia
demasi.maryanne@abc.net.au



Someone should definitely look into this. A documentary would help our cause enormously. When we see a new doctor we could just give them a recording of the documentary to watch if they've never heard of POIS I'm sure it'd be much easier for them than reading through the waldinger lab trials. Unfortunately I thought about it a lot and my social anxiety won't permit me to take part in one. Besides I'm not really an ordinary POIS case since I orgasm multiple times per day.

edit- also a documentary might hold a bit more weight than the tv episode Animus did on Strange Sex although I don't mean to belittle Animus's contribution in any way since it was still a huge step to get POIS on tv.
« Last Edit: 14/10/2011 21:59:48 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 #14795 on: 14/10/2011 21:57:01 »

daveman, nordnurse, and I have made contact, VM. Thank you!

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Offline Vincent M

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« Reply #14796 on: 14/10/2011 22:15:58 »

I believe and I hope that POIS is a lot simpler than what we make of it, at least my pois.  Why certain things like caffeine and nutmeg help me?  Possible over-inflammation?  I hope so.  Sounds a lot better than a sperm allergy. 

I agree that inflammation probably causes most of our symptoms, however I now believe (as many of us here have) this inflammation stems from an allergic reaction to our sperm and semen. This theory makes more sense to me now that all the things that I take to reduce my POIS symptoms are well known for their anti-inflammatory properties.

I drink green tea to reduce my symptoms, but I take fenugreek with it and believe the tea merely enhances the effect of the fenugreek somehow. Perhaps some of the benefit comes from the caffeine, but I used to drink green tea by itself with almost no noticeable effect on my symptoms.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline Vincent M

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« Reply #14797 on: 14/10/2011 23:21:32 »
By the way everyone, thanks to this forum I've been feeling pretty good for the past few months. And today with the help of fenugreek, saw palmetto, and a few other things I felt good enough to apply for a couple jobs for the first time since I developed POIS. I've always believed this forum would save my life and today it may have done just that. I'm still not cured, but I'm far better off than I was before. Thank you everyone.
Taking fenugreek+tea/garlic, saw palmetto, huperzine, niacin, boswellia, and nutmeg.

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Offline Itsthatskater

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« Reply #14798 on: 15/10/2011 00:12:07 »
I honestly think the key to decreasing the amount of Pois or for some people getting rid of it may be O'ing more than once, It seemed to have dramatically helped me and a few other guys on here said it has helped them too.

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Offline GoingCrazy

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« Reply #14799 on: 15/10/2011 02:54:00 »

I believe and I hope that POIS is a lot simpler than what we make of it, at least my pois.  Why certain things like caffeine and nutmeg help me?  Possible over-inflammation?  I hope so.  Sounds a lot better than a sperm allergy. 

I agree that inflammation probably causes most of our symptoms, however I now believe (as many of us here have) this inflammation stems from an allergic reaction to our sperm and semen. This theory makes more sense to me now that all the things that I take to reduce my POIS symptoms are well known for their anti-inflammatory properties.

I drink green tea to reduce my symptoms, but I take fenugreek with it and believe the tea merely enhances the effect of the fenugreek somehow. Perhaps some of the benefit comes from the caffeine, but I used to drink green tea by itself with almost no noticeable effect on my symptoms.

Perhaps you are drinking decaffeinated green tea?  I remember drinking hot chocolate after not drinking it for a while and it had a profound affect.

I personally disagree with the sperm allergy, at least for my POIS, but everybody's entitled to their own opinion.  Just doesn't make sense how my body would be allergic to sperm after having been inside my body for years, and POIS just came in a sudden attack.

"You can see that caffeine also causes the brain's blood vessels to constrict, because it blocks adenosine's ability to open them up. This effect is why some headache medicines like Anacin contain caffeine - if you have a vascular headache, the caffeine will close down the blood vessels and relieve it."

http://www.mcvitamins.com/Health%20Opponents/caffeine.htm

-perhaps my POIS?

And I remember taking excedrin migraine that practically cured my pois, but I was very hyper, perhaps because the caffeine content was 65 mg.  Goody's powder is only 32 mg I believe.
« Last Edit: 15/10/2011 03:00:16 by GoingCrazy »