Post Orgasmic Illness Syndrome (POIS)

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Offline mat780

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5150 on: 02/08/2009 04:08:26 »
Dear Pronobis,

Of course it's possible. But bear in mind that, to do that, we need people with knowledge in languages as well as science and medicine. If you can translate it to any other language, your help will be much welcomed!  [:)]

I already offered myself to do the Spanish translation... but I think it will be on a second stage. Lets finish first with the first part of the English website, then we will add more options.

Is it possible to build this site in different languages?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5151 on: 02/08/2009 07:06:02 »

Thanks Demo,

I just wanted to know if it's same with you (or some of you).

I don't think that my endoc is well informed about pois )))


Pronobis, at this point in POIS history, it's not realistic to expect that an endo or other health practitioner will be "well informed about POIS". Unfortunately, it's up to us to educate endo's and other physicians and healthcare workers about POIS! We can't expect them to know much; just the opposite, sometimes they will simply dismiss us and send us to psychiatrists! We need to explain POIS, the Forum, Dr Waldinger's study, show them the website and the Compendium, etc.

It's not easy, but it is most certainly achievable!
« Last Edit: 02/08/2009 07:09:02 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5152 on: 02/08/2009 07:13:59 »

I think the translation will be more like a "copy" and "paste" thing.  Getting this forum professionally translated would cost over our heads.  Good luck to anyone who wants to try.


This is unnecessarily pessimistic! We have friends right here who will help out, including Mat in Spanish. B_Jim, Pronobis, and Martin know French, etc. and many people who have simply expressed a desire to help us. Known as friends of friends.

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5153 on: 02/08/2009 16:26:08 »
Hi,
I've completed the survey questions offline and just tried to paste in my answers to the online form. However I was then greeted with a message in french apparently detailing an interuption to the service (the survey form was working the day after I last posted that it wasn't working. The new message is different to the last one I got). Again I'll try again later.

Because I can't always get online and have a lot of catching up to do, I've saved and converted the entire contents of the forum to a pdf document and also to a word document (up to and including page 218). Even in small font size the pdf is 1056 pages long! If anyone else feels it would be useful to have a copy of the forum contents in this format (the Word format document is the most useful I think), please send me a private message with an email address I can use. The pdf is 4.9 megabytes and the Word document is 26Mb! These are too large to send via normal email so I'd have to use a service such as yousendit.com or transferbigfiles.com. Perhaps in future on the website we could have a word or pdf  version of the naked scientists forum that is downloadable. Any downloadable copy would have to be updated periodically to keep up with new content being added to the NS forum.

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Offline mat780

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5154 on: 02/08/2009 16:57:10 »
Hi,
I've completed the survey questions offline and just tried to paste in my answers to the online form. However I was then greeted with a message in french apparently detailing an interuption to the service (the survey form was working the day after I last posted that it wasn't working. The new message is different to the last one I got). Again I'll try again later.

Because I can't always get online and have a lot of catching up to do, I've saved and converted the entire contents of the forum to a pdf document and also to a word document (up to and including page 218). Even in small font size the pdf is 1056 pages long! If anyone else feels it would be useful to have a copy of the forum contents in this format (the Word format document is the most useful I think), please send me a private message with an email address I can use. The pdf is 4.9 megabytes and the Word document is 26Mb! These are too large to send via normal email so I'd have to use a service such as yousendit.com or transferbigfiles.com. Perhaps in future on the website we could have a word or pdf  version of the naked scientists forum that is downloadable. Any downloadable copy would have to be updated periodically to keep up with new content being added to the NS forum.

Dear Mellivora,

Good idea!
This could be some kind of backup. We should see how we implement it, one possibility could be to separate the content in semesters (e.g. 2007_1, 2007_2, 2008_1, 2008_2, etc) this way files won’t be so big. And we could update just the last part.



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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5155 on: 02/08/2009 18:36:29 »
B_Jim, the herb Shilajit sounds interesting.

There was a Romanian news story about this I found in Google News, but when I tried to translate it, I received an antiphihishing warning about it,  so I stopped.

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5156 on: 02/08/2009 18:43:04 »
Slowly catching up with some previous posts... Demo I see you were asking for a show of hands for who would take part in a research study. I'd definitely be willing to do that, so count me in. Thanks.

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Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5157 on: 02/08/2009 18:57:18 »
The website is coming together nicely - well done Mat and everyone else involved.
Pyropeach the compendium looks excellent - well done and thanks!
I understand that both of the above are still evolving so I'll read through more thoroughly and chip in ideas that I have.
Great stuff.

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Offline El Stonio

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5158 on: 02/08/2009 19:39:26 »
Hello All,
It's been a while since I've been here.  In the past I've had some moderate success with going to a mostly vegan diet etc.  Buy recently I had a sleep study done and found I had sleep apnea.  Last week I started wearing a TAP, an oral appliance that prevents your tongue from closing off air to your lungs.  Guess what?  My symptoms of POIS are gone, no exaggerating.  (I've been testing, haha.  I had sex Friday and Saturday nite and this Sunday morning jogged/hiked 10 miles.)  In the past I'd be flat on my back craving carbs, feeling depressed and sick.  This may not be everybody's solution but I urge anyone who hasnt had a sleep study to DO IT!  I tried the CPAP but that was so intrusive I laughed it off.  The TAP is aggreeable with me.  Good luck everyone.  Keep searching. Your bodies if they get the right stuff, will work correctly.  I just may get to start dating again  [::)
El Stonio

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5159 on: 02/08/2009 20:22:14 »
Dear martin88,

I urge you to find some real information on hormones (preferably at http://forums.realthyroidhelp.com/viewforum.php?f=5). If your doctor tells you, that you are fine because you´re "in the norm" and you trust him/her, you are making a mistake. There is a difference between normal and healthy ranges. Let me tell you, how "normal" is being constructed. You take, say, 150 people, take their blood, measure their hormones and design the range so that X% of those 150 people lie in that range. Obviously, this works fine, when the those sample people are healthy. When they are not and their hormonal levels are out of whack, you get a much wider range than you would get with healthy people. This is how it can happen, that 25 years ago a man was considered infertile when he had less than 100M spermia per ml of juice. Today, since the fertility rates are going down and the above described method is flawed, anybody having more  than 25M spermia per ml of juice is considered FERTILE! People suffering from thyroid disease are often told, that a TSH of, say, 2 is good, since the normal range is 0.XX - 4 (roughly). However, thyroid sufferers only feel good, when their TSH gets under 1.5 or so! When TSH is larger than that, they feel miserable independently on the type or quantity of medication. So, to sum this long article up..all of your testo is LOW! I didn´t see your thyroid labs, but FT4 should be in the upper third/quarter of the range to be healthy, TSH should be as low as possible (anything under 1 is superb). If you are from US, you are a lucky guy:) Contact Dr. John Crisler (http://www.allthingsmale.com/index.htm). He knows the difference between normal and healthy and has helped many men fighting testosterone deficiency.

For informational completeness´ sake, I should add my personal experience with dieting. Low sugar, high protein, high fat diet is what keeps me going and strong. When I eat high carbo, not to mention vegetarian, diet, I get weak, tired, sleepy and depressed. Maybe, it all has something to do with high insulin (again don´t confuse normal and healthy), which is driven down by aerobic excercise that helps many folks here, including me.

I have read some discussions here on B vitamins. If you have homocystein above 6, you are probably low on B6 and or B12 and or folic acid. When it comes to good mood, which many people are fighting here to get, nothing helped me more, than the metabolized form of B6, namely P5P. A three month supply from Swanson´s costs $5. This is making me a very positive, funny and social type of person. Got me rid of depression in a week, when nothing helped (L-Thryptophan, 5-HTP..you name it).

I was wondering, what might have predetermined me to suffer from POIS and I would like to ask you guys, when you were babies, were you breastfed? I was prematurely born and I didn´t receive a single breast-feeding my entire life. BF makes the immune system strong (catching un on Coreman´s success with Alpha 20C for immunity), so maybe it is somehow involved in our problem. To test whether immunity has any effect on POIS, I will try two immune support products (EPICOR and Immunity essentials from Swanson´s) soon and report back with results.

All of you take care,
D.
Danny, thanks for all your suggestions. I was only reporting what my doc said, I have no opinion made yet on my tests results. I'll check this. It's very possible that it's because I'm not taking enough iodine (because it's too aphrodisiac for me and cause a more severe POIS, I feel that all the energy given by this is wasted in orgasm.) So I'll now take the right amount of iodine and I'll see. I think it's a big decision to start hormonal therapy with thyroid, specially in my case. About ranges, they should take only healthy people or it doesn't make sense.. If you take a lot of b6, in a book I have it's said that b6 should always be taken with the same amount of b2 (called the energy vitamin)..don't know if it's true.
I don't know if I was breastfed for enough time but I was.

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5160 on: 03/08/2009 03:38:35 »
El Stonio, what prompted you to do a sleep study?

Did you snore?

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5161 on: 03/08/2009 04:58:20 »

I think the translation will be more like a "copy" and "paste" thing.  Getting this forum professionally translated would cost over our heads.  Good luck to anyone who wants to try.


This is unnecessarily pessimistic! We have friends right here who will help out, including Mat in Spanish. B_Jim, Pronobis, and Martin know French, etc. and many people who have simply expressed a desire to help us. Known as friends of friends.

Lol, I'm just saying that 220 pages may take some time

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5162 on: 03/08/2009 05:03:16 »
Hello All,
It's been a while since I've been here.  In the past I've had some moderate success with going to a mostly vegan diet etc.  Buy recently I had a sleep study done and found I had sleep apnea.  Last week I started wearing a TAP, an oral appliance that prevents your tongue from closing off air to your lungs.  Guess what?  My symptoms of POIS are gone, no exaggerating.  (I've been testing, haha.  I had sex Friday and Saturday nite and this Sunday morning jogged/hiked 10 miles.)  In the past I'd be flat on my back craving carbs, feeling depressed and sick.  This may not be everybody's solution but I urge anyone who hasnt had a sleep study to DO IT!  I tried the CPAP but that was so intrusive I laughed it off.  The TAP is aggreeable with me.  Good luck everyone.  Keep searching. Your bodies if they get the right stuff, will work correctly.  I just may get to start dating again  [::)
El Stonio

I sort of notice the same thing Stonio.  I rarely go to sleep before 12am.  Maybe I should start giving that a try for my overall mood

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Offline thoufklg5

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5163 on: 03/08/2009 06:13:10 »
I have suffering from hormone problem. I have a question about a medicine its Levitra. My friend has suggest me this for treatment. He has tried this and he has got it by online from http://www.levitrabliss.com/ Is it effective medicine or can be side effects by using this medicine. Should i use it?

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5164 on: 03/08/2009 09:19:24 »

Slowly catching up with some previous posts... Demo I see you were asking for a show of hands for who would take part in a research study. I'd definitely be willing to do that, so count me in. Thanks.


Thanks, mellivora. Hey, you ARE catching up on the posts!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5165 on: 03/08/2009 09:30:59 »

I have suffering from hormone problem. I have a question about a medicine its Levitra. My friend has suggest me this for treatment. He has tried this and he has got it by online from http://www.levitrabliss.com/ Is it effective medicine or can be side effects by using this medicine. Should i use it?


Some people have reported good results. There are side effects, and some people (although rarely) have reported some serious ones, for example, side effects involving vision, arthritis, and diarrhea. I wouldn't recommend taking it without a doctor's supervision and after a discussion of the risks and your specific medical condition, including possible interaction with other prescription drugs.

thoufklg5, do you have POIS?
« Last Edit: 03/08/2009 09:50:40 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5166 on: 03/08/2009 09:36:19 »

Hello All,
It's been a while since I've been here.  In the past I've had some moderate success with going to a mostly vegan diet etc.  Buy recently I had a sleep study done and found I had sleep apnea.  Last week I started wearing a TAP, an oral appliance that prevents your tongue from closing off air to your lungs.  Guess what?  My symptoms of POIS are gone, no exaggerating.  (I've been testing, haha.  I had sex Friday and Saturday nite and this Sunday morning jogged/hiked 10 miles.)  In the past I'd be flat on my back craving carbs, feeling depressed and sick.  This may not be everybody's solution but I urge anyone who hasnt had a sleep study to DO IT!  I tried the CPAP but that was so intrusive I laughed it off.  The TAP is aggreeable with me.  Good luck everyone.  Keep searching. Your bodies if they get the right stuff, will work correctly.  I just may get to start dating again  [::)
El Stonio


Welcome back, El Stonio, and congratulations!! I really hope it sticks! Will you please come back and report to us again?

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5167 on: 03/08/2009 12:43:45 »
Hello All,
It's been a while since I've been here.  In the past I've had some moderate success with going to a mostly vegan diet etc.  Buy recently I had a sleep study done and found I had sleep apnea.  Last week I started wearing a TAP, an oral appliance that prevents your tongue from closing off air to your lungs.  Guess what?  My symptoms of POIS are gone, no exaggerating.  (I've been testing, haha.  I had sex Friday and Saturday nite and this Sunday morning jogged/hiked 10 miles.)  In the past I'd be flat on my back craving carbs, feeling depressed and sick.  This may not be everybody's solution but I urge anyone who hasnt had a sleep study to DO IT!  I tried the CPAP but that was so intrusive I laughed it off.  The TAP is aggreeable with me.  Good luck everyone.  Keep searching. Your bodies if they get the right stuff, will work correctly.  I just may get to start dating again  [::)
El Stonio

(Nice to see you Girlwind, Mellivora, El Stonio old POIS sufferers!!)

Sleep is necessary to produce sexual hormones so maybe it's why. I thought you were already cured in the past with other treatments (If I remember well you're in B_Jim's highlights.) It's regrettable that it's temporary each time.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5168 on: 03/08/2009 23:37:14 »

GC, my ex-psychiatrist (retired) who is a friend, said to me that, "You're a good candidate for probiotics like Align". Not for my POIS, but I think you also wrote positively about probiotics.

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Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5169 on: 04/08/2009 01:37:09 »
With regards to the new website, whom is involved in its creation?

I am sure I can be of some help.... I know guys who (for a small fee) could write a script that could "suck" this whole forum our of here and put it in say a phpBB type environment so we could carry on.... each user would have to have an account on the new system them we could send it over.....

I do not know anyone with time to do it for free at this point.... so its just a thought.... I know its hard for everyone to agree to these type things and I am sure there will be lots of people who like the new site and others will not.... :-( can't please em all!

Is there a place to peek at the new site :-)

Let me know, will help when I can, but I am busy too with my work....

PS.

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Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5170 on: 04/08/2009 01:50:33 »
OK now a post with regard to my current POIS....

I was able to stay O'free for 10 days.... longest time ever! I find it very very hard! At day 7 I felt great, no brain fog, no anxiety.... wow... amazing... Then I got a little over excited, no O yet... but it brought on the POIS symptoms maybe 40-50%! And it did that within 30-60 minutes!

Also I just started seeing a homeopathic Dr. and she explained to me that this POIS thing which she has heard about, but not called POIS, she called it something else which I need her to remind me the name of... but it was with regards to Kidney Chi in Chinese medicine.... and she says its related to Adrenal exhaustion.... I am now having an ASI (Adrenal Stress Index) test done and she said she will know more when the results are in... and thats not till approx. Aug 14th! (bummer)

If nothing shows on it, her next step was hormones.

BTW any Canadians out there? Can you explain more how to get things covered under OHIP? Like test etc...?

PS.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5171 on: 04/08/2009 02:46:19 »


With regards to the new website, whom is involved in its creation?

I am sure I can be of some help.... I know guys who (for a small fee) could write a script that could "suck" this whole forum our of here and put it in say a phpBB type environment so we could carry on.... each user would have to have an account on the new system them we could send it over.....

I do not know anyone with time to do it for free at this point.... so its just a thought.... I know its hard for everyone to agree to these type things and I am sure there will be lots of people who like the new site and others will not.... :-( can't please em all!

Is there a place to peek at the new site :-)

Let me know, will help when I can, but I am busy too with my work....

PS.


Mat and I are working on the site. The budget is shoestring (i.e., zero).
http://sites.google.com/site/poiswebsite/

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5172 on: 04/08/2009 02:54:44 »

HI, POIS-SUFFERER, glad to hear of your testing progress.

I'm not Canadian, but maybe this will help: my health plan covers a goodly portion of the endocrinologist fees and the labwork (including a pituitary/brain scan). Since I'm not using the approved list of health care providers it covers less. I'm following someone's advice that a University medical facility would work better for POIS diagnosis and treatment. And so far, he was right. My hospital diagnosis is hypogonadism.
« Last Edit: 04/08/2009 02:56:20 by demografx »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5173 on: 04/08/2009 06:19:22 »
Demo, I deleted my last post because I really do not want to argue over a post I made that I disagree on too.  Yes I realized I've misunderstood.  I just think you might over-exaggerate on it a little bit.

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5174 on: 04/08/2009 13:45:40 »
This is just a reminder for the email list:
Please follow this link :  http://pois.vndv.com
(You'll see some new emails with some links.)
If we contact a list of organizations we should get between 1 and 10% response so it's good to have as many email addresses as possible..
If everyone would be willing to enter at least one, the process will go faster..
To reduce the cost of a study we can benefit from governement funds for research, or from directors of large hospitals/universities and famous researchers who may have an influence on the financial aspect..
We can look for
-articles/studies about sexuality
-big hospitals/universities involved in research
-organizations for rare or sexual disorders
-(national) institutes for research
-heath organizations from government
-...
Teamwork can really pay off here!
Thank you for your cooperation!
http://pois.vndv.com

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5175 on: 04/08/2009 21:58:15 »

Martin, great work on that Email Form! As you mentioned, if everyone here can just add 1-2 or more email addresses, we can "get the word of POIS out there"!

I'll check your form periodically and then I'll send out the same appeal that I sent to NORD and WHO.

Thanks again!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5176 on: 04/08/2009 22:00:42 »

Demo, I deleted my last post because I really do not want to argue over a post I made that I disagree on too.  Yes I realized I've misunderstood.  I just think you might over-exaggerate on it a little bit.


Thanks, GC!

And I'm sorry if I overdid it.

In good faith, I'll delete my posts, as you did.

I do appreciate your cooperation and your contributions here.
« Last Edit: 04/08/2009 22:05:22 by demografx »

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5177 on: 05/08/2009 01:53:00 »
just found website on (POIS),i have i bad, started to think of possible physiological problems after completing a year of anatomy and physiology.  i am 28, have suffered from adrenal fatigue and severe insomnia for as long as i can remember.  i have restless leg syndrome and get severe leg cramps, opiates make me feel normal, so i have suspected dopamine for a long time.  what about follicle stimulating hormone (fsh)as a colprate,it is released after ejaculation to produce more sperm?.  can anyone get me up to speed by telling me where i can get more sumerized info on POIS and treament.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5178 on: 05/08/2009 17:02:31 »
lauracostis and Bill12, welcome to the POIS thread of The Naked Science Forum!




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

Our new POIS Information Website is here:
http://sites.google.com/site/poiswebsite/

Please see "B_Jim"'s POIS Forum 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

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only study on POIS by Dr. Marcel Waldinger,MD and Dr. David Schweitzer, MD.

If you want a copy (PDF), send me a Private Message with your regular email address and I'll send you back the PDF.

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 my name, i.e., "demografx".


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

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In addition to serving our own informational interests, the resources listed above can be useful for you to show the medical world - which often shows little understanding and is sometimes skeptical of our condition - that POIS has scientific underpinnings and that POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. This can help fight the immediate reaction of some: 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 for over 2 years, which has attracted over 100 POIS sufferers worldwide who have posted here, plus more than 350,000 page visits. Not bad for a rare malady!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5179 on: 05/08/2009 17:08:20 »

lauracostis and Bill12, this post might help you find information about POIS that we have already discussed, by tailoring a Google search to this POIS forum:


SEARCH POIS FORUM WITH GOOGLE

We have an overwhelming amount of data: over 2 years' worth of posts from 150+ Forum members, and an additional 150 POIS sufferers found on the Internet, but not on this forum.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]site:http://www.thenakedscientists.com/

for example, I tried
demografx site:http://www.thenakedscientists.com/

and 1,000+ results came up for "demografx" within POIS Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.

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Offline johnl3

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5180 on: 05/08/2009 17:16:12 »
Hi from John
I am a new member to P.O.I.S and Naked Science
I just wanted to be included in knowing more about the problem others are having with p.o.i.s and possibly sharing if I find anything that might help others.
I can't believe I have found so many that have my symptoms.
I have had my symptoms coming on for 25 years.
I am 62 now I been getting cold and nervous at the start of all this.
 After having greenlight surgery 18 months ago for enlarged prostate, my neck has been getting more stiff after orgasm.
Now I am holding off as long as I can before I have sex,  because I will have a stiff neck for about 4 days and get slight chills.I have read that Dhea might help, I am buying some today.Tak care John (jlkoontz2@comcast.net)


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Offline sclover49

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5181 on: 05/08/2009 20:29:59 »
Hi everybody, I've been reading this forum for the past month (there is a lot of pages) and I too think I suffer from POIS.  A little about myself; I'm 23 y.o. male and have been suffering from this mystery illness on and off since about age 14. I eat extremely healthy; no processed foods, mostly organic fruits and vegetables (some of which I grow myself.), raw milk, and a little meat. I exercise daily and try and avoid synthetic cosmetics, and household cleaners.  I take a multivitamin (New Chapter Only One), and Fish Oil or Cod liver Oil daily.  I suffer from Social Anxiety and depression.

Symptoms I get after O (within 1 to 4 hours last 1-3 days)

Almost always: Fatigue, Jet lag feeling, Brain fog, depressed feelings, anti social feelings
Sometimes: Muscle aches, headaches, sinus pressure, irritability, difficulty sleeping
Rarely: no symptoms at all  [???] I wish I knew why this happens

Sometimes my fatigue is so bad I won't drive a vehicle because I fear I won't be able to concentrate and might get in a crash.

Remedies I've tried:

Antidepressants: Zoloft, Wellbutrin (might be spelled wrong), Paxil: No effect (I no longer take any prescription drugs)

Herbs and supplements I've tried

ZMA: (Zinc, Magnesium, b vitamin): made it worst (no longer take)

Ashwaghanda: helped a little at first but later caused difficulty sleeping (no longer take)

Rhodiola Rosea: slight increase in energy, but caused difficulty sleeping (no longer take)

Fish and Cod Liver Oil: helps with mood and I seem to get less headaches, and muscle aches possibly due to the anti inflammatory nature of Omega 3s (still take regularly)

Curcumin: (turmeric extract):  Helped with mood a little, and had less headaches, sinus problems and muscle and joint pain.  (I'm not currently taking, but am planning restart soon)

Tyrosine: the first time I took it, it gave me a boost of energy but now it makes my stomach hurt and gives me bad headaches (no longer take)

ReiShi mushroom tea:  Works really well sometimes, clears my brainfog, makes me happy and social helps me sleep at night.  However it takes over an hour to make and sometimes it has no effect ??? (occasionally take) I'm planning on trying ReiShi extract sometime in the future.  If you try Reishi (mycellium or mushroom) make it into tea by boiling in water for 1 hour or use an extract. Reishi that hasn't been extracted or boiled doesn't have an effect on me.

A supplement called Mind Boosters Rx by physicians formulas:  clears brainfog pretty well and gives me energy, but causes insomnia which will make my POIS worse the next day. (no longer take)

I've tried some other supplements but can't think of them right now.(brain fog)

hopes this information helps, I have a new theory about POIS which I'll post later.

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5182 on: 06/08/2009 03:03:36 »
---   I have to say that either one of two things are helping me have non-POIS orgasms.  Either my candida treatment/diet or my prolonged celibacy.  I did have one episode though after too many orgasms.  I say that I had about 5 orgasms <-- over a period of 3 days,  and on the fifth orgasm I had some slight POIS symptoms that bothered me for about 2 days.  The yogurt may be helping too.  Today I ate pasta and actually did not become tired afterwards, hopefully caused by either POIS or candida and not something mysterious.
---   But I am becoming less sensitive to different kinds of foods.  Even last saturday I went to the movies and had a huge bag of sour patch kids and popcorn and had no sensitivities too that.  I can still notice my brain fog slowly lifting<- Feels like its all in my frontal lobe for some reason.  Anybody else experience this??  The fog seems like it "lingers" longer after days when I do orgasm.  Even sexual stimulation keeps the brain fog put, and may even add to the brain fog.  But I still feel this fog in my head... I am going to try to be celibate for as long as it takes until all the fog is gone.

I think we all could agree that celibacy is beneficial, as long as you don't intend on orgasm-ing  [:P]  after too long a time

I'm trying not to be too excited for success and get the feeling like I can orgasm whenever I want, it'll just probably lead me into my worst era of pois.  But I will remain celibate until I wake up one day when all of this fog is gone.
« Last Edit: 06/08/2009 03:13:33 by goingcrazy »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5183 on: 06/08/2009 03:11:44 »

ZMA: (Zinc, Magnesium, b vitamin): made it worst (no longer take)

Ashwaghanda: helped a little at first but later caused difficulty sleeping (no longer take)

Rhodiola Rosea: slight increase in energy, but caused difficulty sleeping (no longer take)

Fish and Cod Liver Oil: helps with mood and I seem to get less headaches, and muscle aches possibly due to the anti inflammatory nature of Omega 3s (still take regularly)


I've also noticed an anti-B-vitamin affect when taking it.  It makes me tired instead of claiming to boost my energy.

Rhodiola Rosea seemed to help me sleep more than if I didn't take it.  2 Nyquil can't put me to sleep.  (in POIS)

I also take Omega 3's, but I don't notice anything at all, do you?
« Last Edit: 06/08/2009 04:44:07 by goingcrazy »

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Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5184 on: 06/08/2009 10:20:45 »
goingcrazy,
Quote
I also take Omega 3's, but I don't notice anything at all, do you?

I am taking fish oil and it does indeed improve my mood. I think that it has to have enough DHA in it, I take one with 400mg DHA twice a day. This is unrelated to my recent lack-of-POIS, as I just started taking it last week.

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5185 on: 06/08/2009 12:50:36 »
OK now a post with regard to my current POIS....

I was able to stay O'free for 10 days.... longest time ever! I find it very very hard! At day 7 I felt great, no brain fog, no anxiety.... wow... amazing... Then I got a little over excited, no O yet... but it brought on the POIS symptoms maybe 40-50%! And it did that within 30-60 minutes!

Also I just started seeing a homeopathic Dr. and she explained to me that this POIS thing which she has heard about, but not called POIS, she called it something else which I need her to remind me the name of... but it was with regards to Kidney Chi in Chinese medicine.... and she says its related to Adrenal exhaustion.... I am now having an ASI (Adrenal Stress Index) test done and she said she will know more when the results are in... and thats not till approx. Aug 14th! (bummer)

If nothing shows on it, her next step was hormones.

PS.
I hope you'll tell us more PS!
Maybe it's difficult to stay sane while sexually abstinent if you don't find a way to replace the endorphins. Exercise and work help me a lot.


Martin, great work on that Email Form! As you mentioned, if everyone here can just add 1-2 or more email addresses, we can "get the word of POIS out there"!

I'll check your form periodically and then I'll send out the same appeal that I sent to NORD and WHO.

Thanks again!
Thank you very much Demo! I'm not sure it will be used a lot.. I was thinking about changing slightly the text of the letter for some cases but it's more work. (ex:avoid asking for contact name when we already have it). Tell me if you need help to send letters.

goingcrazy,
Quote
I also take Omega 3's, but I don't notice anything at all, do you?
I am taking fish oil and it does indeed improve my mood. I think that it has to have enough DHA in it, I take one with 400mg DHA twice a day. This is unrelated to my recent lack-of-POIS, as I just started taking it last week.

I tried fish oil with very slight improvement but I can't say if it came from the vitamin e in it.. I was reading that fish oil with high ratio EPA/DHA is effective for depression. DHA has probably other benefits (ADHD? http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1971271 )


« Last Edit: 17/08/2009 22:35:02 by martin88 »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5186 on: 06/08/2009 13:07:12 »
Hi everybody, I've been reading this forum for the past month (there is a lot of pages) and I too think I suffer from POIS. hopes this information helps, I have a new theory about POIS which I'll post later.
Hi Sclover , hope to hear from you soon. If all these antidepressants didn't work it's a good idea to keep the same MD who gave all this. He'll eventually be interested in your case to find an other solution (sleep monitoring, endocrine tests ...)

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Offline Pronobis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5187 on: 06/08/2009 15:19:05 »
This is just a reminder for the email list:
Please follow this link :  http://pois.vndv.com
(You'll see some new emails with some links.)
If we contact a list of organizations we should get between 1 and 10% response so it's good to have as many email addresses as possible..
If everyone would be willing to enter at least one, the process will go faster..
To reduce the cost of a study we can benefit from governement funds for research, or from directors of large hospitals/universities and famous researchers who may have an influence on the financial aspect..
We can look for
-articles/studies about sexuality
-big hospitals/universities involved in research
-organizations for rare or sexual disorders
-(national) institutes for research
-heath organizations from government
-...
Teamwork can really pay off here!
Thank you for your cooperation!
http://pois.vndv.com

Hi Martin,

should we only fill in this form?

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Offline sclover49

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5188 on: 06/08/2009 18:45:26 »
Goingcrazy I mainly take fish and cod liver oil for overall health, EPA and DHA are essential fatty acids. I find it improves my mood but it's not dramatic.

Martin88 I know longer see the doctor that gave me the antidepressants, I never liked him much, as for endocrine test and other blood work my insurance company sucks and won't cover it, and I can't afford the test. (I'm not even sure why I pay for insurance when they don't cover most things)

Here is my new theory on why I get POIS

I recently read an article on sleep http://www.nytimes.com/2009/08/04/health/04real.html?_r=1&partner=rss&emc=rss

Now I've always notice that my POIS is at it's worst in the summer late July, August and Late January and February. 

I've notice my sleep is extremely poor in July and August due to the heat generated in my bedroom (room temp is around 75 + degrees F at bedtime), my room faces the west making it the hottest part of the house.  I've always had difficulty sleeping in warm rooms and this article confirms what I've suspected for years, that a person needs a cool room in order to get proper sleep.  I often wake up in the summer month and drink lots of water because I'm thirsty and hot, causing me to wake up later to use the bathroom (more disrupted sleep).  I still manage to get to sleep, but I believe the excess heat, and waking up to drink and pee, prevents my brain from completing proper sleep cycles needed to restore my bodies chemistry.

So you might be wondering why in January and February I also have trouble sleeping, it's this time of year I spend most of the day indoors, with poor lighting. Proper light exposure (the sun) is needed to set a persons internal clock, but during January and February the days are so short, and the weather is usually bad, that I don't get a chance to get normal sun/light exposure messing up my internal clock, making sleep difficult.

Also I tend to wake up early in the mornings even though I'm still tired due to morning wood.

I believe a deep restful sleep is needed (within a day) in order to restore the hormones in the body and neurochemicals in the brain after orgasm.  I believe that my poor sleep disrupts my ability to re-balance my bodies chemistry, leading to POIS and other problems.  I think people with POIS have difficulty restore the bodies chemistry due to chronic poor sleep.  Poor sleep or lack of sleep been linked to all sorts of problems like blood sugar disorders, brain fog, fatigue, IQ drop, poor athletic performance, disturbs hormones, and I'm sure a dozen other things if you due a search.

I know if I get a good nights sleep I usually don't have near the level of POIS symptom (90% cure).
So here is what I'm going to try:

Get an A/C unit for my room to cool it below 68 F (yes my home already has A/C but it doesn't work well on the second floor)
Avoid all electronic screens at least 1 hour before bed (computer and television screens can disrupt your internal clock and effect your melatonin (a sleeping hormone) production.
Make sure my bed made (I get lazy)
Start a sleep schelude
No fluids 2 hours before bed.  (if your wondering I had my prostate checked and its normal size)
Take melatonin 1/2 hour before bed. (I've already been taking this to help fall asleep, and have to say it works very well, it's not like a drug where it forces you to sleep, it just puts me in the mood to sleep.  I recommend trying it if you have difficulty sleeping 1 mg to 3 mg, don't go above 5 mg or you'll regret it)

I'll let everyone know if these changes help me or not.

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Offline Porke

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5189 on: 06/08/2009 20:12:09 »
Just a thought guys.

From the looks of things there arent any blood results that really make a common denominator.

Also, age and health status seems to vary as well.

How about looking for a common denominator in any prescription / recreational drugs usage in the past?

Just a thought?

Its an anon forum so it doesnt matter if youre an ex crackhead :P

Mine are:
RoAccutane x 2 courses
Ventolin for asthma as a child
Quite heavy ecstasy usage 6 years ago.

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Offline Dean93

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5190 on: 06/08/2009 22:37:19 »

Also I tend to wake up early in the mornings even though I'm still tired due to morning wood.


Good to know that's normal. After getting out of the fatigue of POIS, I still get a little tired everyday of summer after prolonged morning erections.



I'm planning to try probiotics next. Does anyone know any specifics? For example, what specific probiotics are effective. Are there any specific probiotics in the yogurts/supplements that have been effective that cross over?

Great job on the website!

Thank you.

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Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5191 on: 06/08/2009 23:40:54 »
I used Ventolin for asthma in my teens.

A common denominator I see is that all of us were chronic/addicted to masterbating during early teens.
« Last Edit: 06/08/2009 23:44:49 by Limejuice »

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5192 on: 06/08/2009 23:42:34 »
Hi Martin,should we only fill in this form?
Sure, if you know someone we can contact just enter it :)

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Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5193 on: 07/08/2009 00:31:07 »
Sclover, what you're saying is a good reason to make some sleep monitoring tests. Thanks for your report.
I always noticed that in POIS I tend to go to bed later (12-1am) than when I'm out of POIS (10-11pm). This can make the difference if you wake up early for any reason.

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Offline sclover49

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5194 on: 07/08/2009 00:52:28 »
Porke: I've had POIS before any drug use, and the only drug I've use is Marijuana about only a dozen times, since turning 21.  I rarely drink alcohol, I would say maybe once a month I'm really sensitive to alcohol.

I have exercise induced asthma but have never taken any drugs for it.

I probably masturbated once everyday since age 12 till 22, but I didn't think masturbating once a day was a lot. I do it a lot less now due to POIS.  I believe porn makes POIS worse and I've given it up.

Dean93:  I've never taken pro-biotic supplements but I have consume pro-biotic rich foods regularly like yogurt, raw sauerkraut, kimchi, raw milk, and Kefir (Homemade with Raw Organic Grassfed Milk, everyday for 2 years until I accidentally killed my Kefir Grain) I don't think they really helped my POIS, but they did improve my digestion and immune system, never got sick while drinking Kefir.

If you want a cheap pro-biotic try obtaining a Kefir grain either from an online store, or a web forum.  I got mine for free, from a nice lady, on a yahoo forum about Kefir. Store bought Kefir isn't the same as homemade Kefir, which contains like 30 strains of friendly bacteria, most probiotic supplements have less than 12 strains.
Check this website out for more http://users.sa.chariot.net.au/~dna/kefirpage.html#composition-of-KG

If you try a pro-biotic let me know if you have any luck.

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Offline sclover49

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5195 on: 07/08/2009 01:49:09 »
martin88: I'll have to look into getting some sort of sleep monitoring test if my new sleep programs doesn't work.

Also I was curious if anyone else with POIS, feels that they are physically weaker than the average person their age. 

I've notice my whole life (not just when experiencing POIS) that I'm just not as strong, athletic, or have as good endurance for physical activities as the average male.  I exercise regularly lifting, running, stretching, walking, but compared to most of my friends I'm weaker than they are.  [???]

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5196 on: 07/08/2009 02:40:44 »
LABWORK/ENDOCRINOLOGIST UPDATE

Visited endocrinologist yesterday to review my 8th month of POIS treatment (TRT - testosterone replacement therapy).

Last week's lab results, shown to me yesterday, indicate that my hyperprolactinemia is gone! [:)] My prolactin count was abnormally high since I started treatment 8 months ago. Yesterday was normal! The count went from 90 to 19.

In all modesty, I take most of the credit for this! As I learned from this forum, and from others' experiences, we often need to do our own homework in medicine - not just POIS - because no one health professional can keep up with everything. From my reading about high prolactin (prolactin, in males, is not well understood), I read in wikipedia that the Rx reglan was one of the main culprits in high prolactin. With the endo's agreement, I quit reglan. This had been very effective for nausea, but too risky, so I am now finding new ways to deal with the nausea.

Testosterone readings, because of the patches I use daily, continue to read in healthy ranges across different measures.

TESTOSTERONE, TOTAL       383      ng/dL       250-1100(ref range)

Also measured, and normal:

TESTOSTERONE, BIOAVAILABLE
TESTOSTERONE, FREE
TESTOSTERONE, FREE AND TOTAL
SEX HORMONE GLOBULIN BINDING (SHGB)

BASIC METABOLIC PANEL
HEPATIC FUNCTION PANEL
COMPLETE BLOOD COUNT (CBC) & PLT & DIFF

Glucose continues to be high (pre-diabetic), so I'm seeing the University medical center's nutritionist. Creatinine is high, so I need to cut back on red meat.

CONCLUSION: With daily T-patches of 10mg, POIS is nearly eliminated Days 1-3. "Day Zero" continues to be uncomfortable, but improved.

Yesterday, Day Zero, was inexplicably POIS-free, which has not been true for my POIS history. I was involved in a challenging situation (confronting my bank with their incompetence), plus I was seeing the endo and getting lab results. The combination of "heightened emotional activities" - is a weak explanation...but my only one!
« Last Edit: 07/08/2009 02:51:30 by demografx »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5197 on: 07/08/2009 02:43:59 »
Sclover49


--  For my personal experiences, I was in college all last year and I would say I got about 12 hours of sleep each night for half of a year.  What I didn't do was go to bed before 12.  My sleep hours would honestly be from 2 am to about 2 pm, because I took night classes.  I honestly feel better sleeping before 12, and waking up as the sun wakes me up.  I try not to "sleep in" as I did in college because it didn't help me.  But what I did not do in college was combine a lot of sleep with celibacy.

--  I think sleeping before 12 pm is the serotonin/dopamine/melatonin  <-- I really don't know but--- something with chemicals in your head.  In POIS I never get tired.  Out of POIS I can actually feel my body getting tired... Maybe a buildup of some kind of chemical depleted after orgasm?

--  As for being weaker than my friends... it all depends on who to compare it too.  I believe POIS has no affect on your size, but definitely your strength and ability to perform.  <-- POIS mental affects.  I experience about double the brain fog I normally do after a long workout for some reason.  I had that thought in my head too, I think it's more of a depressed POIS thing, thinking I am worse than others around me.

--  Even now with sleep I would have to say I wake up about 3-4 times each night, and I also sleep with a fan blowing in my face which helps me fall asleep, but maybe that's not such a good idea for deep sleep.

Does anybody experience a bad reaction after viewing porn, not after masturbating.. just viewing porn?  Maybe it is a guilt thing.

I have quit sexual stimulation "non-orgasmic" sex, masturbation and viewing porn...a complete laissez-faire "hands off" type of personality      [:P]

« Last Edit: 07/08/2009 02:59:50 by goingcrazy »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5198 on: 07/08/2009 02:47:30 »
Demo

You're saying Reglan was the cause for your high prolactin rate?

I'm guessing you combined the -getting off of that drug with -celibacy?

« Last Edit: 07/08/2009 02:51:31 by goingcrazy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #5199 on: 07/08/2009 02:56:34 »

Demo


You're saying Reglan was the cause for your high prolactin rate?

I'm guessing you combined the -getting off of that drug with -celibacy?


Celibacy?? No way!  [;D]