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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6461276 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4050 on: 07/04/2009 01:15:18 »
TESTOSTERONE CAUTION

Please keep in mind that testosterone is not a universal POIS healer. It works for me. And for at least one other sufferer (Dave23 on Page 4). Labwork in conjunction with seeing a physician, preferably an endocrinologist, is the best way to find out if it's right for you.

This forum is not intended for POIS medical treatment advice, it only puts forth the theories and treatments of the individual poster.
« Last Edit: 07/04/2009 21:11:04 by demografx »
 

Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4051 on: 07/04/2009 01:36:16 »
For POIS-SUFFERER and others: there are some variations of opinion about what to test, here at the forum, so you may wish to ask others as well.

MY ENDOCRINOLOGIST'S LABWORK ORDERED FOR POIS

-PROLACTIN

-TESTOSTERONE(Bioavailable Testosterone, Free Testosterone, Total Testosterone, [SHGB] Sex Hormone Globulin Binding)

-DHEA-SULFATE

-FSH (Follicle Stimulating Hormone)

-LH (Luteinizing Hormone)

-TSH (Thyroid-Stimulating Hormone)

-CORTISOL AM

Wonder what my doctor is going to say about this.... :-) I guess I then post the results and others can comment on what they see....

Need to find an ENDO...

Thanks.
 

Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4052 on: 07/04/2009 01:38:10 »
Hello everyone! I wanted to let you know that I tried Relora and it was a disaster for me. It made my fingers tingle and I felt like I was in POIS - especially mentally. I'm glad it seems to be working for some, but I did not have a good first experience. I will wait a few days and give it one more attempt to make sure it wasn't something else. I see where some others are are trying it as well.... I will be curious if they experience any of the same symptoms.

Just today I took 250x2 in the morning and by noon I was feeling off and very odd.... it made me have a bad panic attack and ended in me taking a BENZO! But it could be other thinks.... so I will continue also.....
 

Offline Deniseamonalisa

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4053 on: 07/04/2009 01:38:56 »
Are there any females with this syndrome in this forum? I need help and answers :( I am just body slammed after intercourse, usually within 6-12 hours. Fever, with all of it's associated pain. Misery! I have been evaluated in the ER with NO explanation for the fever $5000 bill (thank god for ins, but still?) My husband finally made the connection that these episodes coincide with our lovemaking. We have limited the activity and it is absolutely the cause. AHHHH! I have racked my brain & found this forum, but it seems to be mostly men. (I feel your pain, guys!) Any help would be greatly appreciated!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4054 on: 07/04/2009 01:48:14 »

Hello everyone! I wanted to let you know that I tried Relora and it was a disaster for me. It made my fingers tingle and I felt like I was in POIS - especially mentally. I'm glad it seems to be working for some, but I did not have a good first experience. I will wait a few days and give it one more attempt to make sure it wasn't something else. I see where some others are are trying it as well.... I will be curious if they experience any of the same symptoms.


EDS, very sorry to hear about the bad experience! I hope that somehow this leads you to the right path for you.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4055 on: 07/04/2009 02:03:57 »

Are there any females with this syndrome in this forum? I need help and answers :( I am just body slammed after intercourse, usually within 6-12 hours. Fever, with all of it's associated pain. Misery! I have been evaluated in the ER with NO explanation for the fever $5000 bill (thank god for ins, but still?) My husband finally made the connection that these episodes coincide with our lovemaking. We have limited the activity and it is absolutely the cause. AHHHH! I have racked my brain & found this forum, but it seems to be mostly men. (I feel your pain, guys!) Any help would be greatly appreciated!


Denise, a few women have been here or represented by their partners. The most recent is ajs:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg243338#msg243338

You can also try to send a Private Message to "Girlwind". She created our POIS video.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4056 on: 07/04/2009 02:05:48 »

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



The consensus at this forum to heal your POIS, is to start with hormonal bloodtesting, preferably with an endocrinologist.

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

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:

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 "Pyropeach" a Private Message with your regular email address and he'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 the recipient's name, e.g., "pyropeach".

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 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.

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 250,000 page visits. Not bad for a rare malady!
 

Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4057 on: 07/04/2009 07:27:55 »
Hello everyone! I wanted to let you know that I tried Relora and it was a disaster for me. It made my fingers tingle and I felt like I was in POIS - especially mentally. I'm glad it seems to be working for some, but I did not have a good first experience. I will wait a few days and give it one more attempt to make sure it wasn't something else. I see where some others are are trying it as well.... I will be curious if they experience any of the same symptoms.

Just today I took 250x2 in the morning and by noon I was feeling off and very odd.... it made me have a bad panic attack and ended in me taking a BENZO! But it could be other thinks.... so I will continue also.....

Wait... you took  2 pills 250 milligrams? shouldn't you be taking one at a time... I have to say this is a strange herb, as soon as i took it I felt calm, almost a little too calm to the point where I was feeling almost feminine lol... but after taking it for a few days you seem to experience it better.  At least for me.
 

Offline POIS-SUFFERER

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4058 on: 07/04/2009 10:28:43 »
I will try one at a time now and see (RELORA), it was an odd feeling, and anything odd for too long triggers my anxiety! Its a vicious battle, even feeling too calm can trigger it! Its only been a couple days on it so its hard to tell at this point.....

Thanks.
 

Offline pyropeach

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4059 on: 08/04/2009 08:01:15 »
Congrats Demo on your continued success.  I can only wish your solution could work for me, except getting T patches would be crazy for me since my last blood test showed I have a sky-soaring 164 pg/mL of free T.  (My actual reported number was 16.4 ng/dL with a range of 9-30 ng/dL).  Since I haven't posted in a long time, I felt it was time to give a brief update.  I'm sorry to say that Relora and PS just don't cut it.  Yes, they do help reduce the symptoms after a couple orgasms.  But after subsequent orgasms, they don't do much, if not just make me feel worse.  Don't get me wrong though, I'm definitely better off with Relora and PS, but its still no cure.

Have those who have had success with Relora continuously take it?  or only after orgasm?  I only take it afterwards in addition to PS. 

Seeing that different things are working on different people seems to show that they don't really fix the problem, but just mask the symptoms. 
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4060 on: 08/04/2009 16:50:33 »
pyropeach, I'm wondering if the pituitary adenoma is causing this problem.  Everyone here who gets their pituitary scanned seems to find something abnormal.  If more people had pituitary scans, and verified a (micro)-adenoma, I think we could be quite sure that this is the cause of POIS.  If some of you are considering various scans with a physician, it might be worthwhile considering a pituitary MRI (with contrast), based on the results we have been seeing so far in this forum, and the fact that the pituitary largely regulates sexual function. (The one other scan I might consider is an abdomen MRI, to look at the adrenals).

My endocrinologist thinks there is a 50% chance I have cyclical Cushings, which would probably be caused by the adenoma.  Unfortunately this means months of testing before we can be sure.  With cyclical Cushings, you can get normal test results.  You have to catch cortisol when it is high, and then quickly follow up with more tests.

I think this basically means there is a 50% chance my POIS is caused by this adenoma.
« Last Edit: 08/04/2009 17:00:49 by Counterpoints »
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4061 on: 08/04/2009 16:54:59 »
I've also tried Relora, in high doses (1000 mg/day) and smaller doses.  It didn't have enough of an effect for me to even know whether it was making a difference.  PS was the same.

Pyropeach, if the range for free T is 9-30, and yours is 16.4, I don't think your free T is "sky soaring"; it seems mid-range.  It's high enough that it would be hard to justify using testosterone, but it's not abnormally high.

« Last Edit: 08/04/2009 16:57:06 by Counterpoints »
 

Offline rock27

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4062 on: 08/04/2009 18:12:25 »
POIS puzzle..

I posted my too low Testosterone on day 3. But now I get a result of the first morning after release, with Testosterone so high it is out-of-range. Also cortisol elevated, rest of the day cortisol normal. However this was a saliva-test so don't know if doc will rely on it. It does make sense however, as the first day I feel strange, but usually POIS doesn't really hit me till afternoon. It seems now my pois-case is overproduction of testosteron and cortisol, and then so fatigued it can't produce enough of testosterone anymore. Tomorrow I'll be back testing so I'll be fully prepared for doc's visit. I support all scans.

 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4063 on: 08/04/2009 18:32:23 »
POIS puzzle..

I posted my too low Testosterone on day 3. But now I get a result of the first morning after release, with Testosterone so high it is out-of-range. Also cortisol elevated, rest of the day cortisol normal. However this was a saliva-test so don't know if doc will rely on it. It does make sense however, as the first day I feel strange, but usually POIS doesn't really hit me till afternoon. It seems now my pois-case is overproduction of testosteron and cortisol, and then so fatigued it can't produce enough of testosterone anymore. Tomorrow I'll be back testing so I'll be fully prepared for doc's visit. I support all scans.




Very interesting rock.  I just finished talking to a very prominent neuroscientist (who is a physician and professor), who said it was IMPERATIVE that I get my hormone levels checked when normal, just before orgasm, and just after orgasm.  He said I would probably have to go to a hospital to do this.  He also seemed to think this was a very serious problem, and should be taken seriously.... he said I needed to find a physician who would help me get these hormone tests.  He said that orgasm causes immense activations and de-activations in the brain that could cause hormone fluctuations.  He also thought that my symptoms probably set in within seconds of ejaculation.  He said that the brain-fog and anxiety could be caused by a markedly decreased level of alertness, brought on by de-activation following orgasm.

Can you give readings on how elevated your testosterone and cortisol are, immediately following orgasm?
« Last Edit: 08/04/2009 18:35:50 by Counterpoints »
 

Offline rock27

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4064 on: 08/04/2009 18:46:24 »
Counterpoints,

testosterone 197  pg/ml (44-148)
cortisol 8 am: 13.1 ng/ml (3.7-9.5)
 
I took the test at 8 o'clock , about 9 hours after release. I never really sleep after orgasm, I now know why.

I don't know (if possible) how to compare this saliva value to blood value I mentioned earlier. I'll be in for full blood testing in the hospital tomorrow, to validate the saliva result and to do the before and after release tests (I think an hour later will do) and some hours later. I have to do this to fill in the puzzle.


« Last Edit: 08/04/2009 18:55:09 by rock27 »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4065 on: 08/04/2009 21:27:08 »
POIS DIARY

 If I take a long hot shower I get a very flushed feeling and mouth ulcers for the day's remainder. So I try to avoid long hot ones. Sunday was an exception and so I hot-shower-indulged. Coincidentally it was also Day Zero. But the flushed feeling lasted till Tuesday pm! I haven't had prolonged hot showers in a long, long time.  Was the prolonged flushing from testosterone? I hate this because it makes me wonder if my POIS cure is off this time around. At least there were no mouth ulcers. 

Apart from the above, I can happily confirm that in the last 8x activity, POIS symptoms did not show beyond Day Zero, and were very tolerable even then. Frequency and satisfaction increased tremendously over pre-treatment.
« Last Edit: 08/04/2009 22:13:53 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4066 on: 08/04/2009 21:31:41 »
Counterpoints, I'm sorry to hear about the complexity of your required testing!
« Last Edit: 08/04/2009 21:37:32 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4067 on: 08/04/2009 21:36:24 »
Rocky, best wishes with your new test. It seems that you're progressing in depth!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4068 on: 08/04/2009 22:21:25 »
Pyro, I wish you the best in finding a permanent treatment!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4069 on: 08/04/2009 22:50:37 »
Counterpoints, I dug deeper into old forum posts to see if I could understand better what happened with Levitra vs. testosterone.  I couldn't find anything that would better explain my last post reply to you. My early testosterone injections, every 2 weeks, must have laid a foundation of POIS cure which I erroneously attributed to Levitra, and later, when I quit injections, a foundation of POIS-improvement because T was still in my system. Again, I attributed the improvement erroneously to Levitra. Even at the very end, prior to T-patch treatment, I was somewhat improved over my 30 year POIS history, presumably because of the extended T-injections. Further recent testing without Levitra only seemed to confirm this.

Levitra has a nitric oxide action which I think plays a role  in orgasm,  so if you can think of something that is missing from my reasoning above, I will gladly adjust my thinking to give Levitra some more credit.
 

Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4070 on: 09/04/2009 01:46:33 »
I seem to remember several posts far back in the thread that theorised that the quality of orgasm affected the severity of POIS symptoms. One poster I think was in a new relationship, and being madly in love reduced his symptoms greatly.

A more recent theory was that Levitra helped the brain generate oxytocin, and the oxytocin significantly lessened the symptoms of POIS

http://www.sciencedaily.com/releases/2007/08/070823161930.htm

What I am getting at is that the whole "quality of orgasm/being in love" situation would also involve lots of naturally produced oxytocin, and so could have an effect similar to what you experienced with Levitra (less POIS).

Has something changed in your life Demo that would increase either your "in love" status, or just the general quality of your orgasms? Of course I am not asking for an answer to that very personal question, but could this be a possibility?

If your natural stock of oxytocin is temporarily elevated, the Levitra may have become temporarily less important to you.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4071 on: 09/04/2009 02:12:24 »
Hurray, thanks! I am just amazed at the slow building of feeling powerful with T-therapy. Nothing has changed as you would suggest with oxytocin and love life. Recently celebrated 30+ year marriage. I feel a vitality that I haven't felt in decades.
« Last Edit: 09/04/2009 02:15:22 by demografx »
 

Offline hurray

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4072 on: 09/04/2009 02:51:47 »
Glad it's working so well for you!

Ah well, just a theory! The only other thing that occurred to me was that Levitra may have had a semi-permanent effect on you which means that you do not need to take it as much, or at all, to achieve the benefits that you previously felt from it.

The link below suggests that Viagra (chemically similar to Levitra) can produce an effect that carries on for 6 months or more after treatment is stopped:

http://www.webmd.com/erectile-dysfunction/news/20040513/nightly-viagra-may-restore-normal-erections

Finally, clutching at straws, is it possible that you've greatly increased the consumption of Arginine in your diet? As it is the precursor of Nitric Acid in the human body, lots of extra NO could make Levitra's role in your recovery redundant.

http://en.wikipedia.org/wiki/Arginine
« Last Edit: 09/04/2009 02:55:24 by hurray »
 

Offline Ambient123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4073 on: 09/04/2009 03:16:11 »
Hey guys

Was just wondering if a theory regarding a deficiency of serotonin had ever been discussed on this forum as a cause of POIS?

I noticed that one or more people had improvements in POIS with SSRIs

Thanks

Ambient
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #4074 on: 09/04/2009 08:16:19 »
Hurray, very interesting report about the 6-month continuing effect of Viagra! Yes, Viagra is similar, my GP just thought that Levitra has a safer side-effect profile.

My 2-year POIS treatment history is now somewhat of an enigma in explaining the role of Levitra.

The last thing in the world that I want to do is to unintentionally mislead anyone as to what works for me and why. But 100% accurate reporting has gotten tricky! Most of us still rely on self-reported and subjective research. Which opens us up to more error than, say, a clinical trial study with scientific measurement.

Right now I have great hopes that testosterone can help many POIS sufferers who can benefit by boosting themselves into mid-range testosterone levels. With physician supervision. With increasing acceptance of testing, remedies like Relora being tested with positive results, and many other positive reports here, I think we're seeing light at the end of the tunnel for most POIS sufferers. None of this was true when this forum started just 2 years ago.
« Last Edit: 09/04/2009 08:34:17 by demografx »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
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