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  4. Post Orgasmic Illness Syndrome (POIS)
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Post Orgasmic Illness Syndrome (POIS)

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Offline EDS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11360 on: 30/01/2011 16:28:19 »
Quote from: valtak2610 on 27/01/2011 01:39:22
Hi :
Long term POIS sufferer - avidly following the POIS related news on this Forum.
I'm wondering how a vasectomy would help/hinder.
This is how wikipedia describes it:
"..When the vasectomy is complete, sperm cannot exit the body through the penis. Sperm are still produced by the testicles, but they are broken down and absorbed by the body. Much fluid content is absorbed by membranes in the epididymis, and much solid content is broken down by the responding macrophages and re-absorbed via the blood stream. Sperm is matured in the epididymis for about a month once it leaves the testicles. After vasectomy, the membranes increase in size to absorb and store more fluid; this triggering of the immune system causes more macrophages to be recruited to break down and re-absorb more of the solid content. Within one year after a vasectomy, sixty to seventy percent of vasectomized men develop antisperm antibodies.[6] In some cases, vasitis nodosa, a benign proliferation of the ductular epithelium, can also result.[7][8] The buildup of sperm increases pressure in the vas deferens and epididymis. The entry of the sperm into the scrotum causes sperm granulomas to be formed by the body to contain and absorb the sperm which the body treats as a foreign substance."

Is there a way to measure the antisperm antibody count? Are we suffering from
a lack of these?

Valtak, I had a vasectomy several years back with hopes that it would alleviate some POIS symptoms, but there was zero change/improvement.
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Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11361 on: 30/01/2011 17:15:52 »
Quote from: EDS on 30/01/2011 16:28:19
Valtak, I had a vasectomy several years back with hopes that it would alleviate some POIS symptoms, but there was zero change/improvement.

Interesting!  This could indicate that, if sperm are indeed causing an allergic reaction, the 'gap' at which they come into contact with the blood stream/antibodies may be located prior to the vas deferens, which is severed/tied in a vasectomy.  That is, the vasectomy doesn't stop sperm production--it just stops the sperm from mixing in with the expelled semen.  But the sperm still continue to be 'moved around' in the pre-vas-deferens part of system, and so they could be causing a problem there.

Or, if the 'gap' occurs after the vas deferens, this could indicate that it is not sperm, but rather some other element of the semen that is the allergen. 

To differentiate between these two possibilities, it would be a good to perform a scratch-test on someone who has had a vasectomy--that way, you could see whether the sperm-less semen also creates an allergic welt. 

Likewise, the possibility of using a progesterone/testosterone combination to stop spermatogenesis could provide a good comparison of a different form of sperm-free ejaculate--in this case, there would be no sperm 'moving around' anywhere in the system, whether pre- or post- vas deferens. 
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Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11362 on: 30/01/2011 18:43:55 »
Quote from: Animus on 30/01/2011 07:05:29
I hope the show does some good. Today was the second day of filming. We did a 4 hour interview this morning which was really in-depth and very honest. They asked me all about having POIS, how it affected my life, and did a great job framing the story and asking questions. Whatever the outcome is, I was totally honest and open with them about my experiences. I probably could have said a lot of things better. And my story is kind of extreme, so I hope it still represents the illness well. But at least it's something out there...
The production crew is terrific, and they've been filming me in many common situations to make the story look more familiar and get people to see me as just another person who they could relate to. They've been doing a great job at that.
Tomorrow is the last day of filming, and I'm going to try to include some remarks about dr.Waldinger's recent paper because I haven't mentioned it yet.
Finally, they are going to take all this footage and edit it and turn it into a half-hour show.

Thank you guys so much for your encouragement- it means a lot.

Your story does not represent the illness well.  I hope you clarified and gave a more general impression also.  Yes, you were brave enough to do this, but in doing it, you take on a big responsibility.  You are not just representing yourself, you are representing all of us, whether we like it or not.  I hope you know this.  What you say could affect all of our cases, and how they are handled.  Good luck, and thanks for your efforts.
« Last Edit: 30/01/2011 19:04:06 by Counterpoints »
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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11363 on: 30/01/2011 19:49:05 »
Quote from: Guthrie on 30/01/2011 17:15:52
Quote from: EDS on 30/01/2011 16:28:19
Valtak, I had a vasectomy several years back with hopes that it would alleviate some POIS symptoms, but there was zero change/improvement.

Interesting!  This could indicate that, if sperm are indeed causing an allergic reaction, the 'gap' at which they come into contact with the blood stream/antibodies may be located prior to the vas deferens, which is severed/tied in a vasectomy.  That is, the vasectomy doesn't stop sperm production--it just stops the sperm from mixing in with the expelled semen.  But the sperm still continue to be 'moved around' in the pre-vas-deferens part of system, and so they could be causing a problem there.

Or, if the 'gap' occurs after the vas deferens, this could indicate that it is not sperm, but rather some other element of the semen that is the allergen. 

To differentiate between these two possibilities, it would be a good to perform a scratch-test on someone who has had a vasectomy--that way, you could see whether the sperm-less semen also creates an allergic welt. 

Likewise, the possibility of using a progesterone/testosterone combination to stop spermatogenesis could provide a good comparison of a different form of sperm-free ejaculate--in this case, there would be no sperm 'moving around' anywhere in the system, whether pre- or post- vas deferens. 
Guthrie, you have a top notch research mind.  doing a skinprick test with sperm free semen is probably about they easiest and cheapest thing we can do to collect valuable information about pois.  anyone who wants to try a skinprick test themselves can dip a sterilized needle or pin in their semen and prickk the inside of their forearm.  Monitor it for redness and inflammation, and if you see a reaction on your skin measure it in millimeters.   Everyone should being doing a skin prickk test the next time they have an O, it is not an injection, just a little poke with a pin.  If you have a wife or a girlfriend, see if you can prickk their skin also, this will help tell us if most people without pois will also have a pos or neg reaction to semen.
« Last Edit: 30/01/2011 20:00:43 by lauracostis »
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11364 on: 30/01/2011 20:57:25 »
Laurac, if I do that with my TRT, would mine still be useful data or biased? (I still have POIS symptoms, lasting anywhere from a few hours to 24 vs. 4 days pre-TRT).

Oh, and how do we measure something in millimeters???

Is this safe to do unsupervised?
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11365 on: 30/01/2011 21:08:14 »
Quote from: Guthrie on 30/01/2011 13:05:55
Quote from: lauracostis on 30/01/2011 08:55:13
The only thing is that they probably would have wanted to follow me around while I was doing hospital rotations.  And then later after the show came out my patients would say "aren't you that guy who has pois, I thought they said on the show that while you were in pois you took an IQ test and you were only as smart as a spider money" then I would have to explain that there would only be a small chance that I would kill them with the wrong medication or a lethal dose.

This is one of the single most hilarious statements posted on this forum to date!

I just had a scary thought. What if my heart surgeon had POIS while he was performing my emergency quintuple coronary bypass last year???? [;D] [;D]
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11366 on: 30/01/2011 21:32:46 »
Quote from: demografx on 30/01/2011 21:08:14
Quote from: Guthrie on 30/01/2011 13:05:55
Quote from: lauracostis on 30/01/2011 08:55:13
The only thing is that they probably would have wanted to follow me around while I was doing hospital rotations.  And then later after the show came out my patients would say "aren't you that guy who has pois, I thought they said on the show that while you were in pois you took an IQ test and you were only as smart as a spider money" then I would have to explain that there would only be a small chance that I would kill them with the wrong medication or a lethal dose.

This is one of the single most hilarious statements posted on this forum to date!

I just had a scary thought. What if my heart surgeon had POIS while he was performing my emergency quintuple coronary bypass last year???? [;D] [;D]

I had a scarier thought!!

We can't be sure about doctors, dentists, lawyers, can't trust bridges and buildings designed by engineers, can't take flights on airlines (ooo that's a scary one...)

Women are going to begin getting more jobs that have been traditionally ours.... OMG!!

At least we know that they can't test for POIS still as part of the job interview process, they don't know how!

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11367 on: 30/01/2011 21:36:49 »

Daveman, I heard that semen/skinprick testing will soon be required on all job interviews worldwide. [;D]
« Last Edit: 31/01/2011 03:42:52 by demografx »
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Offline Nightingale

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11368 on: 30/01/2011 21:38:52 »
Quote from: Guthrie on 30/01/2011 17:15:52
Quote from: EDS on 30/01/2011 16:28:19
Valtak, I had a vasectomy several years back with hopes that it would alleviate some POIS symptoms, but there was zero change/improvement.

Interesting!  This could indicate that, if sperm are indeed causing an allergic reaction, the 'gap' at which they come into contact with the blood stream/antibodies may be located prior to the vas deferens, which is severed/tied in a vasectomy.  That is, the vasectomy doesn't stop sperm production--it just stops the sperm from mixing in with the expelled semen.  But the sperm still continue to be 'moved around' in the pre-vas-deferens part of system, and so they could be causing a problem there.

Or, if the 'gap' occurs after the vas deferens, this could indicate that it is not sperm, but rather some other element of the semen that is the allergen. 

To differentiate between these two possibilities, it would be a good to perform a scratch-test on someone who has had a vasectomy--that way, you could see whether the sperm-less semen also creates an allergic welt. 

Likewise, the possibility of using a progesterone/testosterone combination to stop spermatogenesis could provide a good comparison of a different form of sperm-free ejaculate--in this case, there would be no sperm 'moving around' anywhere in the system, whether pre- or post- vas deferens. 

I think this deserves a bump.  Will add more facts to the pile
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11369 on: 30/01/2011 21:40:22 »
Quote from: demografx on 30/01/2011 21:36:49


Daveman, I heard that semen/skinprick testing will soon be required on all job interviews worldwide.

LOL,

It would be a good thing in the long run..... they'd have to understand how to interpret the test. If they can do that, we'd be a long way to the solution!!
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Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11370 on: 30/01/2011 21:47:52 »
Quote from: demografx on 30/01/2011 20:57:25
Laurac, if I do that with my TRT, would mine still be useful data or biased? (I still have POIS symptoms, lasting anywhere from a few hours to 24 vs. 4 days pre-TRT).

Oh, and how do we measure something in millimeters???

Is this safe to do unsupervised?

Regarding safety--from wikipedia, "Skin allergy test":
Quote
   

Consumers who undergo skin testing should know that anaphylaxis can occur anytime. So if any of the following symptoms are experienced, a physician consultation is recommended immediately:

    * Low grade Fever
    * Lightheadedness or dizziness
    * Wheezing or Shortness of breath
    * Extensive skin rash
    * Swelling of face, lips or mouth
    * Difficulty swallowing or speaking

...

Even though skin testing may sound like a benign procedure it does have some risks which include swollen red bumps (hives) may occur after the test. The hives usually disappear in a few hours after the test. In rare cases they can persist for a day or two. These hives may be itchy and are best treated by applying an over the counter hydrocortisone cream. In very rare cases one may develop a full blown allergic reaction. Physicians who perform skin test always have equipment and medications available in case an anaphylaxis reaction occurs. This is the main reason why consumers should not get skin testing performed at corner stores or by people who have no medical training.


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11371 on: 30/01/2011 22:10:11 »
Quote from: daveman on 30/01/2011 21:40:22

If they can do that, we'd be a long way to the solution!!


No pun intended, of course.

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Offline artist

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11372 on: 30/01/2011 23:06:05 »
Hello everyone,

Some months ago I discovered this forum.
My illness being acknowledged as POIS was surprising for me.

I perceived problems for the first time when I was about 40 but the complaints lasted only one day then, so when not having an O early in the morning it didn’t disturb my work.
After one night sleep problems were gone.
Later, being out of work, it caused regularly ‘a lost day’.

But I  ought to be happy not having troubles during more days or even a week like most people on this forum.

My symptoms are (and were) - sometimes a little different from what I read on the forum - but mainly the same:
sweating,
eye irritation, pressure behind (or inside) the eyes, tears
extreme fatigue
brain-fog, not being able to think and concentrate

a symptom I didn’t meet on this forum:
a kind of pressure and beat inside my chest which I assumed was related to my heart;
this symptom perseveres the longest of all.
Very remarkable:
That beat has a frequency about 2 times my heartbeat and is mostly very ‘remote’, and
 ‘deep inside’………………………...

A question crossed my mind reading the forum:
We’re all POIS sufferers and know what will happen to us after an ‘O’.
Do we know what happens after O to a ‘not POIS sufferer’?
I mean this:
Several possibilities I heard from:
After an O falling asleep (and sleep very well)
After an O very tired and a little dizzy for a while
After an O very refreshed up, vividly and full of energy
and more.
In other words: How is life without POIS actually?

As for the Prof. Waldinger report there seems to be a problem with me.

About a 15 years ago I had a prostate surgery.
In my case now my semen disappears right into the bladder and doesn't pass the urethra.
Although my POIS complaints before and after the surgery are the same !
Related to this probem:
I wonder how to get some semen – if I wanted a treatment – as there isn’t an ejaculation?
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11373 on: 31/01/2011 00:49:34 »
Measure in 16ths and divide by 0.63 to get millimeters.
1/16 = 1/0.63 = 1.58mm.
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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11374 on: 31/01/2011 01:00:41 »
Quote from: artist on 30/01/2011 23:06:05
Hello everyone,

........


As for the Prof. Waldinger report there seems to be a problem with me.

About a 15 years ago I had a prostate surgery.
In my case now my semen disappears right into the bladder and doesn't pass the urethra.
Although my POIS complaints before and after the surgery are the same !
Related to this probem:
I wonder how to get some semen – if I wanted a treatment – as there isn’t an ejaculation?


Hi artist,

As I understand it, it doesn't necesarily have to get to the urethra. It can happen any where from the testicles to the urethra. He seems to specifically mention the urethra but seems to refer to the journey to it as well.

Having had a vesectomy, I know that it's possible to extract sperm, but you have to go to the doctor for that. I think it can be an ambulatory procedure, but it's probably not cheap.

They can extract and store frozen.
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Offline Animus

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11375 on: 31/01/2011 01:07:43 »
Quote from: Counterpoints on 30/01/2011 18:43:55
Quote from: Animus on 30/01/2011 07:05:29
I hope the show does some good. Today was the second day of filming. We did a 4 hour interview this morning which was really in-depth and very honest. They asked me all about having POIS, how it affected my life, and did a great job framing the story and asking questions. Whatever the outcome is, I was totally honest and open with them about my experiences. I probably could have said a lot of things better. And my story is kind of extreme, so I hope it still represents the illness well. But at least it's something out there...
The production crew is terrific, and they've been filming me in many common situations to make the story look more familiar and get people to see me as just another person who they could relate to. They've been doing a great job at that.
Tomorrow is the last day of filming, and I'm going to try to include some remarks about dr.Waldinger's recent paper because I haven't mentioned it yet.
Finally, they are going to take all this footage and edit it and turn it into a half-hour show.

Thank you guys so much for your encouragement- it means a lot.

Your story does not represent the illness well.  I hope you clarified and gave a more general impression also.  Yes, you were brave enough to do this, but in doing it, you take on a big responsibility.  You are not just representing yourself, you are representing all of us, whether we like it or not.  I hope you know this.  What you say could affect all of our cases, and how they are handled.  Good luck, and thanks for your efforts.

i know what you are saying. And I think the main sticking point is that I had radical surgeries to combat POIS, including castration. I also feel that this is not representative of the general POIS community. But maybe it takes an extreme example for people to see how serious this illness can be. I just hope that things came across fairly. I'll leave the judgment up to the you. I think it was the right thing to do the show, and apparently no one else wanted to do it. And TLC was very interested in my story so I went ahead with it.
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11376 on: 31/01/2011 02:03:32 »

Thank you Animus, I admire your courage!
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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11377 on: 31/01/2011 02:08:20 »
.

artist, welcome to the POIS thread of The Naked Science Forum!




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


Our POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

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:

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


* Most recent POIS Research Studies, 2011 *

If you will send Prof. dr. Waldinger an e-mail, stating that you have read his message on the Forum, at http://www.thenakedscientists.com/forum/index.php?topic=6576.msg340138#msg340138 and that you are willing to fill in a questionnaire, he will send you the copies of both 2011 research articles by return through email. At a later date, he will send you the questionnaire which, after having filled in, you should send him back by e-mail.
His email:
prof.dr.waldinger.pois@gmail.com

Prof. dr. Marcel D. Waldinger's website:
http://www.post-orgasmic-illness-syndrome.com/en/index.html


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.

  
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


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


There are a couple of ways to get any or all of the above 3 studies: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF.

Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

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

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

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 nearly 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 1,000,000 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 #11378 on: 31/01/2011 02:11:30 »




artist, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: almost 4 years' worth of posts (over  10,000 posts!) from 150+ Forum members, and an additional 150 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#.
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Offline dbfd588

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #11379 on: 31/01/2011 02:26:20 »
I love just settin back and watching the info spill in from everyones comments. Hopefully we'll have some solid news within 2011. But I was just settin here reading and I remebered an unusual symtom. I used to volunteer on the local Fire Dept and Im now a extrication technician with the Rescue Squad. We cut people from car wrecks etc. Anyways rescue work creates alot of addrealine. On my good days I try to do as much as possible with the squad. One day I was feelin good and went on a call. That day after the call its like I was just tire or "burned out". Its like the adrenaline effect made me sick feeling. I had nausea and just crappy feelin. Didnt feel sick, just had a wierd feelin. Sorta like my body was tellin me that its tired of the adrenaline. Hadnt really experineced it lately but I did have a couple episodes. Ofcourse theirs alot of addreline pumping while mastubating/NE is going on so I dont know. Could it be an adverse effect of addrenaline. Maybe exhausted adrenal glands? I heard some foods can cause adrenal gland malfuntions.
« Last Edit: 31/01/2011 02:36:23 by dbfd588 »
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Tags: nicotinamide  / pois  / post-orgasmic illness syndrome  / pois survey 
 
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