[kurtosis]

POIS has been a really unpleasant experience. Not fun at all. But if there's something POIS has thought me it's patience. Another is perseverance.

We may have an illness but that's no reason to treat people cruelly or to lash out at those who we feel do not understand our situation. True grace is knowing that you have a problem but facing the world with courage, kindness and humility. These are what I aspire to and curing POIS will always be secondary to these ideals.

Guess that's my thought for the day.

[Nightingale]

POIS has been a really unpleasant experience. Not fun at all. But if there's something POIS has thought me it's patience. Another is perseverance.

We may have an illness but that's no reason to treat people cruelly or to lash out at those who we feel do not understand our situation. True grace is knowing that you have a problem but facing the world with courage, kindness and humility. These are what I aspire to and curing POIS will always be secondary to these ideals.

Guess that's my thought for the day.

Thanks for the thought kurtosis.  I have developed a radical patience in dealing with these challenges.  This illness has honed my humility into something I rely on as my primary coping tool.

With those connections you make from those papers, I have only to look at my mottled hands to find some supporting evidence.

[Omen 30]

Should we get ourselves checked for brain aneurysm?I think I have one,cause the symptoms I have after orgasm like stiff neck,headache,confusion.I will talk about it to my doc,and I wish I am wrong:(

[Quasar]

BIG NEWS!!!!!

Sorry for not connecting a lot lately, but i wanted to share that i'm 90% cured!! I explain everything on the other Pois forum: http://poiscenter.com/forums/index.php?topic=945.0

I'm so happy; LOL!

[kurtosis]

BIG NEWS!!!!!

Sorry for not connecting a lot lately, but i wanted to share that i'm 90% cured!! I explain everything on the other Pois forum: http://poiscenter.com/forums/index.php?topic=945.0

I'm so happy; LOL!

That's great news. I think your tonsils were probably inflammed and it's interesting that tonsil stones are calcium deposits. Perhaps your cranial calcium levels were too high.

I've had several tests for sleep apnea and they've ruled it out. Any sleeping problems I have are down to sinusitis and there's no obvious allergic cause of the sinusitis. Indeed my IgE is low whether I have POIS or sinus blockage. I've been to 2 allergy specialists so far, trying to connect the sinusitis with POIS. Hence, the belief that it's a mast cell disorder but not due to a specific allergen.

[kurtosis]

BIG NEWS!!!!!

Sorry for not connecting a lot lately, but i wanted to share that i'm 90% cured!! I explain everything on the other Pois forum: http://poiscenter.com/forums/index.php?topic=945.0

I'm so happy; LOL!

I would also urge anyone who is posting here about something on poiscenter.com to repost the information here. This is a separate forum and some people are members of NSF but not poiscenter.
Thanks.

[Quasar]

I would also urge anyone who is posting here about something on poiscenter.com to repost the information here. This is a separate forum and some people are members of NSF but not poiscenter.
Thanks.

Sorry, here is the post i wrote on the Poiscenter forum:

Hi guys! First i'd like to apologize for not connecting more often lately. The reason is that i don't wanted to think about Pois so much. But now i have some good news: I'm 90% cured!!! My biggest symptom was the headache i suffered in all my scalp after having an O. That headache lasted for hours and days and also caused me psychological symptoms. So, how i got cured? You wouldn't guess it: i had a total tonsillectomy. I always had what they call "cryptic tonsils" or "tonsils stones". You can check that on Google. It's kind of disgusting. I told my doctor about it and he says "it's not possible for a tonsillectomy to improve headache symptoms". Look, i don't care what he thinks about it LOL (i still think he is a great doctor). What i know is that now after the O. i don't have that debilitating headache anymore!!! I still have some stomach issues, but my main problem was the headache, and that is gone!

So, here are the hypothesis:

1) Tonsillectomy is good for Pois sufferers who have cryptic tonsils/tonsil stones. ---> this one is very likely
2) Tonsillectomy is good for Pois sufferers even if they have no problems with tonsils. (tonsils are lymphoid tissue)  ---> this one is not so likely
3) The antibiotics they gave me after the tonsillectomy were the reason for the headaches cure. ---> i don't know.
4) I had an underlying Sleep Apnea and I didn't know, and the tonsillectomy improved that ---> i don't know if i had a sleep apnea, but it's a possibility.


Kurtosis, i find very interesting the calcium topic. I think tonsil stones are made of calcium deposits, but also bacteria. Still, the main constituent may be calcium. But i believe if my calcium levels were (i don't know) high before the tonsillectomy, there would be still high afterwards...So i'm more inclined to believe my Tonsils were inflammed or were causing a weird immune reaction. Or maybe they were negatively affecting blood flow to my head/scalp.

[B_Daniel]

How long have you been better for?  I hate to say it, but many of us have improved for a week or two. Im really hoping this continues to work for you.

[Quasar]

How long have you been better for?  I hate to say it, but many of us have improved for a week or two. Im really hoping this continues to work for you.

2 months aprox. I have waited those 2 months before posting it here because i wanted to be sure that the problem was solved. And indeed is. Before, i had instantly that scalp numbness and headache after the O. Now i don't have the scalp numbness and that horrible headache. I also hope it continues the same way!! The only symptom that remains is some stomach bloatness...In fact, last week i tried to have 1 O. per day (for me that is a lot) and i had no problems. It's been years since i was able to have 1 O. per day without symptoms. I'm even thinking about starting to look for a girlfriend, since i didn't want to have one while i had Pois.

[Quasar]

BTW, even if i'm 90% cured, i want to still help on this forum, and to donate to NORD. Do you know if it's possible to pay using Paypal?

[Starsky]

90 %? So whats left?

[Quasar]

90 %? So whats left?

Nothing really as important: just some stomach pain and bloatness, but nothing really serious. My main issue was the headache, fatigue and pshychological symptoms that lasted for days. And all of that is solved

[kurtosis]

90 %? So whats left?

Nothing really as important: just some stomach pain and bloatness, but nothing really serious. My main issue was the headache, fatigue and pshychological symptoms that lasted for days. And all of that is solved

Interesting. Can anyone who has POIS and who still has tonsils let us know?

[Vincent M]

I still have my tonsils, but I haven't had any problems with them that I'm aware of. I haven't been tested for sleep apnea so I suppose it's a possibility.

[Prancer]

That's very good news Quasar! I still have my tonsils. I also don't have any of the symptoms of tonsil stones (but I just read that there sometimes are no noticeable symptoms and it's good to get X-ray to find out for sure).

As a quick side note, I just realized that I do have methylcobalamin B12 (the thorne capsules) that I bought a while back. I completely forgot that I had ordered it! I'll start taking them now as my source of B12, folate & B6.

[LAPOISSE2]

Hi all

Just a report ; I get really good result with ketoprofene (Nsaids) for treating POIS episode ;It's actually the fist drug thats clearly help me and I can say that after 2 month of use.Niacin taken in a daily basis helps also. I'm getting quite convinced that in my case POIS is a problem of brain vessels constriction or lead to this condition ;

Just a question : My doc who knows this condition(for him it's a form of Post coital head haches) want to have a close look to my brain vessels with the MRI  numeric capture(the DVD) to see if there is anomaly ; Has anybody had this kind of precise verification ?

[Quasar]

@Lapoisse2

It's interesting. So, that Nsaid has 2 functions i suppose: 1) reduce headache pain (like any Nsaid) and 2) reduce vessels vasospam or constriction/dilation.  It's interesting because i think both mechanisms could be related. I remember having some success with Nsaids and also Paracetamol. One doctor recommended me once to take Propranolol.

Well, going back to my tonsils topic, i've made a new Poll here: http://poiscenter.com/forums/index.php?topic=946.0

[Nightingale]

Still have my tonsils.  I have been diagnosed with mild sleep apnea, but it subsided with stopping a certain med.

I too will say what B_Daniel said: there have been quite a few people who have cured themselves only to come back later and say it just helped.  I don't want to ruin the party, but put it in perspective.  It could be temporary.

[Quasar]

@Nightingale

Thats true. I'll never know if it will come back (hope not!). It's been 2 months. If it comes back i'll tell this forum ASAP.

[kurtosis]

Just a question : My doc who knows this condition(for him it's a form of Post coital head haches) want to have a close look to my brain vessels with the MRI  numeric capture(the DVD) to see if there is anomaly ; Has anybody had this kind of precise verification ?

I really think this is a great idea. I had an MRI and they didn't find any obvious problem but I guess it may have been more useful to have the MRI immediately after an O. I had allowed 3 hours to elapse for obvious reasons. I was in work that day...

However, I've always felt that part of my POIS was blood vessel related and I sometimes get mild headache symptoms that sometimes develop into migraines. It's rare but I don't think it's completely unrelated to my POIS.

So a question is what of the chemical cocktail that changes during an erection and following an O causes blood vessels to dilate or constrict?
Histamine is one neurotransmitter that does this. The Calcium channel also has an effect. Is POIS related to hypertension? Is there reduced NO production. All interesting questions to be explored with the help of a willing and interested neurologist.

For instance, have a look at supplements that cause vasodilation.
http://www.ehow.com/about_6615780_supplements-dilate-blood-vessels.html
Niacin, Vitamin C, Magnesium, etc. Ring any bells?
You could add ginkgo and l-arginine to this list. These are all things that have brought about some POIS relief for people. It's an interesting thought...