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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6440362 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7225 on: 03/04/2010 19:42:45 »
.
« Last Edit: 03/04/2010 23:08:29 by demografx »
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7226 on: 03/04/2010 20:49:24 »
I'd like to ask everyone about the subject of "derealization":
Would I assume "derealization" is what I call "brain fog"?

In that case,
1) Sneaks up, but not immediate, other symptoms appear first like hot flush ringing in ears.
2) Lasts for first part of POIS, day after & 2nd day strongest.
3) Not constant 24/7 Can diminish on 3rd and 4th, and hump again on 5th for instance. But goes away until next "event"
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7227 on: 03/04/2010 20:53:09 »
In general I have a more physical experience, although I have been realizing now that I have more feedback and am more aware, that sometimes the brain fog (because it effects the brain) disguises itself. I see that it's there when I'm paying attention, and that it is also responsible for heightening/worsening my physical sensations. I see the physical sensations more strongly "through" the brain fog.

 

Offline John21

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7228 on: 03/04/2010 22:47:23 »
Today is day 2 from Thursday night's NE. So far I have zero symptoms, but I am hesitant to say I'm out of the woods until a week or so has passed, as the dead-headedness of my phase B often hammers me. I have been eating wheat and even drinking milk, something that I had long ago cut out due to a belief that it made my symptoms worse, but this time I have had no apparent negative effect from it (so far).

Also in my diet I have been consuming foods that I believe are anti-inflammatory. Instead of potatoes I have been eating sweet potatoes. I also have spinach as a staple in my diet now, along with the blueberry/cranberry yogurt dessert every night. I have also been taking Bilberry supplements. (I also picked up some Devil's Claw today (B_Jim's suggestion), and I might take it if I get symptoms.) Overall I think my diet should reduce inflammation, so that might be what is helping me.

The other significant change is that yesterday I fasted (as per my Catholic requirement). All day long until supper I ate minimal food, mainly small pieces of homemade bread. I would only eat enough to keep me from getting a headache. There were times I was feeling quite woozy, maybe I went further than I had to. During this time of fasting I was tired, and dozed off quite often as I relaxed, listening to an audiobook. The reason I think this fasting might be significant is that Friday night I slept very well, which is unusual for me. I got 7 continuous hours of sleep and then fell back for another hour. This is far from my regular pattern of waking through the night. It is possible that the good sleep had nothing to do with fasting but resulted from relaxing and the NE, coupled with the anti-inflammatory diet. But it is a possibility to consider.

And again today I felt completely normal. It felt great to be out in public without any distress or self conciousness that would typically be with me if I was feeling unwell. Hoping it continues...
« Last Edit: 04/04/2010 12:07:25 by John21 »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7229 on: 03/04/2010 23:07:13 »


Chat Room

C'mon over, let's chat...the water's fine!
http://forums.delphiforums.com/POIS/chat

(It's 11:42 AM Saturday, April 3, PST)


Great chat today, guys! Thanx for showing up!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7230 on: 03/04/2010 23:11:55 »

Today is day 2 from Thursday night's NE. So far I have zero symptoms...today I felt completely normal. It felt great to be out in public without any distress or self conciousness that would typically be with me if I was feeling unwell. Hoping it continues...


John, we're all pulling for ya!!!!!!! Best wishes!!!!!
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7231 on: 04/04/2010 01:08:44 »
Today is day 2 from Thursday night's NE. So far I have zero symptoms, but I am hesitant to say I'm out of the woods until a week or so has passed,....

Yeah, what you say gives me great hope. I am sure that it's a double edged thing.
1) that some imbalance is causing the body to beat the hell out of itself, causing inflation and sensitivity.
2) that certain foods/chemical additives/hormonal modifiers can exagerate the sensitivities, while others can reduce them (anti-inflamatries etc.).

I have noticed that I am 10 times more sensitive to certain drugs or chemicals than would be other normal people... for instance we recently bought a natural tranquilizer made from about 5 different plant extracts. It's mild and most people hardly feel anything. Half the normal dosage knocked me out for the whole night.

Other things like MSG; we eat so much more of that crap than we realize, so we are not even aware that it effects us. When you think you are eating healthy you expect to get better, until you find out that this healthy food had something in it that twangs you off the chart.

I sort of feel it's like that. TWANG, we are sort of resonant, like a taught guitar string. When something comes along, that resonates, TWANG, yet it doesn't effect anyone else and maybe don't even know that it's hidden in what we are eating.

So I'm sure we are all rooting for you. Thanks for the feedback.
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7232 on: 04/04/2010 01:41:11 »
Wanted to share something....

Libido! There are so many things involved. And I'm sort of confused.

Earlier on, when I didn't know what POIS was, I was afraid to have sex. It felt as though it was killing me, literally. With luck I would have sex once every six weeks. And when I did, I was ready and willing, but often couldn't "get it up".  But even so, I would orgasm, barely knocking at the door! So this didn't help to create enthusiasm for the next time.

I came to realize though that much of the resistence in having sex didn't necesarily come from hormone imbalance, but from fear.

But lately I'm even more confused. Lack of libido, caused by hormones or caused by fear? After getting over the fear of going back into pain, I seemed to have a series of better sessions, at least as far as libido goes (still feel like hell for a week or so). More fuller errections, getting "horny" sooner, even when I was with symptoms. I could have sex often enough that I didn't have an orgasm before 20 seconds or so.

But this last time, and maybe a few others that I can think of, and knowing that fear isn't the problem anymore, I had a session that produced few symptoms, on day 3 I felt pretty good, but the libido was on the ground. No interest. Even cuddling with the wifey, nothing.

Finally on day 7, 2 or 3 days symptom free and I'm thinking about another cuddle.... but THIS time....
 

Offline robb23

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7233 on: 04/04/2010 06:12:36 »
Hi everyone,

I've been following this forum for a long time. I'm 25 and also suffer from POIS. Following ejaculation my mind goes blank for several days, I become badly fatigued, my body feels like it's completely drained of all nervous energy. I turn into a zombie and it usually takes me 7-8 days to recover. 

I suspect this was caused by excessive masturbation starting at 13 and done excessively for 10 years. Looking back, I probably started to develop POIS around 14 or 15, I started losing my mental concentration around this time and I went from being active and extroverted to becoming anxious, nervous, and absentminded all the time. I also ate lots of junk and processed food, spent most of my time sitting and studying, exercised very little and never slept regularly. Also sat in front of the computer studying for long hours.

I have generally stopped ejaculating for two years now in order to heal my body but have seen very little improvement. I've also improved my diet and avoid eating anything unhealthy. Right now I'm taking royal jelly powder and olive leaf extract to treat my condition but haven't seen any effects so far.

These days, even when I don't have full blown POIS, I'm still constantly fatigued, especially in the mornings, with daily brain fog, stiff joints, low energy/drive, and a slow mind. When I try to exercise I get fatigued very quickly.

Other problems that I have include indigestion/low appetite, constant thirst/urination, chest pains, weakened heart function, hair loss, and other problems. I don't know if they could be related to some thyroid or adrenal disorder that causes POIS.

I took some blood tests last year and discovered I had low total testosterone, 407 ng/dl on a scale of 400-1080 ng/dl. Results from two later tests were even lower, 9.056 nmol/L and 9.682 nmol/L (on a scale of 6.07-27.1 nmol/L). Doctors said these levels were all "within normal range" but they look very low to me. Also low were SHBG (19 nmol/L scale 11-80 nmol/L), E2 (68.00 pmol/L scale 73.40-275.25 pmol/L), and my white blood cell count (4.5 x10^3/uL on a scale of 4.8-10.0 x10^3/uL). Prolactin was high (261.59 mIU/L scale 55.97-278.36 mIU/L). TSH was 2.5 uIU/ML (scale 0.35-6.00 uIU/ML) and later 1.780 uIU/ML (scale 0.27-4.2 uIU/ML).

This condition has been debilitating, I've wasted a good part of my life because of it, but I'm hoping I can find some answers to cure it. I hope a solution eventually comes to us.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7234 on: 04/04/2010 07:10:25 »

robb23, welcome to the POIS thread of The Naked Science Forum!




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


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

Our new 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:

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 formal medical investigation on POIS by Dr. Marcel Waldinger,MD and Dr. Dave Schweitzer, MD.

There are 2 ways to get it: (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 British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For for over 3 years, our POIS forum has attracted over 150 POIS sufferers worldwide who have posted here, plus over 600,000 page visits. Not bad for a rare malady!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7235 on: 04/04/2010 07:11:41 »

robb23, 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: 3 years' worth of posts (over 7,000 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
demografx POIS site:http://thenakedscientists.com/

and 1,000+ results came up for "demografx" 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#.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7236 on: 04/04/2010 07:16:54 »

I took some blood tests last year and discovered I had low total testosterone, 407 ng/dl on a scale of 400-1080 ng/dl. Results from two later tests were even lower, 9.056 nmol/L and 9.682 nmol/L (on a scale of 6.07-27.1 nmol/L). Doctors said these levels were all "within normal range" but they look very low to me.


Robb, my testosterone treatment has been very successful against POIS. My theory is that for those who testosterone can help with POIS, higher-than-average levels of testosterone are needed. Here are some posts relating to my treatment:
http://www.google.com/#hl=en&source=hp&q=demografx+testosterone+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&rlz=1W1DAUS_en&aq=f&aqi=&aql=&oq=&gs_rfai=&fp=467c3568f2eec009

Best wishes and welcome again!
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7237 on: 04/04/2010 13:21:27 »
Doctors said these levels were all "within normal range" but they look very low to me.

Seems that's not surprising at all from what I've heard here.... I still have to take my tests, but when I do, I'm going to bring them straight here, much more apt to get a better diagmostic than most doctors will give.

Personally this hormone stuff is way over my head, almost scarey to me, not to be able to get my mind around it. But I feel a lot of good support and knowledge (and SYMPATHY) here.

So good luck.

 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7238 on: 04/04/2010 13:34:04 »
Made it to the chat room last night. Demo was there. It's a great parallel to the forum, we were talking about how deceiving internet interactions can be. You can "know" someone for years on internet, and not really KNOW them.

The chat opens a depth to the personality, and also permits a more fluid interchange of spontaneous feelings and understanding. You see things that you don't see on the forum.

It was fun too!
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7239 on: 04/04/2010 13:48:00 »
Finally on day 7, 2 or 3 days symptom free and I'm thinking about another cuddle.... but THIS time....

I looked it up, it had been about 10 days since the last.

That is, this time it took 10 days to get the libido back, and yet other times when I have felt a lot worse, I had super strong libido on the third day.

Anyways I'm on day 1 again... but it's not all that strong. I followed the rule that seems to help me a lot. Put force behind the contractions. So far it's been pretty reliable. I don't understand it much, but it helps a lot.

 

Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7240 on: 04/04/2010 18:29:40 »
demo,
have you ever been tested for 'hypogonadism'?
(appologises if this has been talked prev on forum)

"Men in their 30s and 40s also fall prey to low testosterone counts. It's a disorder called hypogonadism, and it can be caused by an undescended testicle, a testicular injury, a pituitary gland disorder or even prescription drugs."

http://www.timinvermont.com/fitness/boosttes.htm
http://www.nowloss.com/ways-to-increase-testosterone-levels-naturally-without-using-steroids.htm
« Last Edit: 04/04/2010 21:56:00 by daveyboy »
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7241 on: 04/04/2010 19:38:29 »

Men in their 30s and 40s also fall prey to low testosterone counts. It's a disorder called hypogonadism, and it can be caused by an undescended testicle, a testicular injury, a pituitary gland disorder or even prescription drugs.


Hmmm, made me wonder. It seems then, that there must be others out there with low testosterone, but that don't have POIS...

So then is the low T a side effect of something else?

Interesting point Daveboy.
 

Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7242 on: 04/04/2010 21:25:55 »
Rob


"I have generally stopped ejaculating for two years now in order to heal my body but have seen very little improvement. I've also improved my diet and avoid eating anything unhealthy. Right now I'm taking royal jelly powder and olive leaf extract to treat my condition but haven't seen any effects so far."

Welcome.
How much olive leaf extract do  you use and  how long hav you been using it.
I calculated pablo's 50ml per day is equal to 250 mg of pure olive leaf extract and
the extra 30ml is equal to 150mg of pure olive extract tablet wise.

« Last Edit: 04/04/2010 21:28:11 by CCconfucius »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7243 on: 05/04/2010 01:18:52 »
Hypogonadism and POIS


demo,

have you ever been tested for 'hypogonadism'?
(appologises if this has been talked prev on forum)

"Men in their 30s and 40s also fall prey to low testosterone counts. It's a disorder called hypogonadism, and it can be caused by an undescended testicle, a testicular injury, a pituitary gland disorder or even prescription drugs."

http://www.timinvermont.com/fitness/boosttes.htm
http://www.nowloss.com/ways-to-increase-testosterone-levels-naturally-without-using-steroids.htm



Hmmm, made me wonder. It seems then, that there must be others out there with low testosterone, but that don't have POIS...

So then is the low T a side effect of something else?

Interesting point Daveboy.


Written below, this might answer some questions, from an old post of mine:


Do I have Hypogonadism or POIS?

My endocrinologist writes "hypogonadism" in his labwork orders for my bloodtests. (If he wrote "POIS" - an unrecognized malady - I'm sure that would create undesirable questions in the lab).

Hypogonadism means that the body produces insufficient levels of testosterone. Which is exactly what they found in my blood testing: low testosterone (along with very high prolactin).

I was prescribed testosterone relacement therapy (TRT), which, most happily, cures my POIS 90%+.

What is confusing to me is that TRT is also the treatment for hypogonadism. But my symptoms are clearly POIS, and I don't see a symptom-similarity between POIS and hypogonadism.

Does this make sense?

ps - About 2 hours after writing the above, I found John's old post below. Now my question is "Do hypogonadism symptoms sometimes last for DAYS or weeks after orgasm?" If they do, maybe this is a new discovery! Do I (and others "with POIS" who are primarily affected by low testosterone) simply have a form of hypogonadism and not POIS?


Some interesting discussions we've had here about hypogonadism and POIS!
http://www.google.com/#hl=en&rlz=1W1DAUS_en&q=hypogonadism+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&aq=f&aqi=&aql=&oq=&gs_rfai=&fp=467c3568f2eec009

And I'll repeat my mantra: I believe, starting with my POIS-and-testosterone talks with Dr Petr Weiss in the Czech Republic 10 years ago (I found him through 2 top U.S. sex researchers, one who was interviewed on Larry King Live and referred me to the the 2nd one) that higher-than-average levels of testosterone are needed for the drug to work on POIS (which is my personal theory from my own personal testing - for those who respond to that form of treatment). But if you're tempted to test that theory, work closely with a physician to monitor your blood levels, preferably an endocrinologist.
« Last Edit: 05/04/2010 01:28:33 by demografx »
 

Offline robb23

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7244 on: 05/04/2010 03:45:46 »
Rob


"I have generally stopped ejaculating for two years now in order to heal my body but have seen very little improvement. I've also improved my diet and avoid eating anything unhealthy. Right now I'm taking royal jelly powder and olive leaf extract to treat my condition but haven't seen any effects so far."

Welcome.
How much olive leaf extract do  you use and  how long hav you been using it.
I calculated pablo's 50ml per day is equal to 250 mg of pure olive leaf extract and
the extra 30ml is equal to 150mg of pure olive extract tablet wise.



Hi CCconfucius,

I'm following his recommendation and taking 50 ml each day mixed with 500 ml water. I've taken it for a week so far but seen no effects.
 

Offline robb23

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7245 on: 05/04/2010 04:02:50 »

I took some blood tests last year and discovered I had low total testosterone, 407 ng/dl on a scale of 400-1080 ng/dl. Results from two later tests were even lower, 9.056 nmol/L and 9.682 nmol/L (on a scale of 6.07-27.1 nmol/L). Doctors said these levels were all "within normal range" but they look very low to me.


Robb, my testosterone treatment has been very successful against POIS. My theory is that for those who testosterone can help with POIS, higher-than-average levels of testosterone are needed. Here are some posts relating to my treatment:
newbielink:http://www.google.com/#hl=en&source=hp&q=demografx+testosterone+POIS+site%3Ahttp%3A%2F%2Fthenakedscientists.com&rlz=1W1DAUS_en&aq=f&aqi=&aql=&oq=&gs_rfai=&fp=467c3568f2eec009 [nonactive]

Best wishes and welcome again!

Hi demo,

I'm considering testosterone treatment but don't know if it would shut down my body's own testosterone production. Would it be too early to start treatment at 25?

I've been looking at herbs that might increase testosterone naturally and I found this website with several listed; this guy claims he raised his testosterone from 240 to 800 by cycling these herbs

newbielink:http://www.boost-your-low-testosterone.com/testosterone-herbal.html [nonactive]

has anyone here tried these with positive results?
 

Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7246 on: 05/04/2010 04:04:43 »

I'm following his recommendation and taking 50 ml each day mixed with 500 ml water. I've taken it for a week so far but seen no effects.

Hi robb23,

Just so we're all on the same page here, when you say that you're taking 50 ml per day, doesn't that basically come out to a whole 2-ounce bottle per day?  That seems expensive--how much does that cost you per day?
 

Offline robb23

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7247 on: 05/04/2010 04:22:06 »

I'm following his recommendation and taking 50 ml each day mixed with 500 ml water. I've taken it for a week so far but seen no effects.

Hi robb23,

Just so we're all on the same page here, when you say that you're taking 50 ml per day, doesn't that basically come out to a whole 2-ounce bottle per day?  That seems expensive--how much does that cost you per day?

It was expensive, I purchased 4 bottles together for $147 including the shipping

Each bottle contains 500 ml so this would last for 40 days
« Last Edit: 05/04/2010 04:26:46 by robb23 »
 

Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7248 on: 05/04/2010 04:36:52 »
demo,
no i just it was interesting that undescended testicle was listed as a possible cause for hypogonadism.

Robb,
Can you put your low testosterone to any of these (from the article):
undescended testicle, a testicular injury, a pituitary gland disorder or even prescription drugs?

"Would it be too early to start treatment at 25?"
difficult to answer, remember we're not doctors...

but there's 307 pages of good advice and stories.

« Last Edit: 05/04/2010 04:42:28 by daveyboy »
 

Offline robb23

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7249 on: 05/04/2010 04:49:09 »
Doctors said these levels were all "within normal range" but they look very low to me.

Seems that's not surprising at all from what I've heard here.... I still have to take my tests, but when I do, I'm going to bring them straight here, much more apt to get a better diagmostic than most doctors will give.

Personally this hormone stuff is way over my head, almost scarey to me, not to be able to get my mind around it. But I feel a lot of good support and knowledge (and SYMPATHY) here.

So good luck.



Yes, you almost have to self diagnose yourself because the doctors won't do it properly. Going to see doctors for POIS has been unsuccessful and frustrating, when they simply blow you off and tell you there's nothing wrong with you. It's also difficult to see a specialist or an endocrinologist without a GP referring you first.

The hormone stuff is confusing at first, but I got a better understanding of it from following this forum and doing some research on my own. 
« Last Edit: 05/04/2010 04:50:50 by robb23 »
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7249 on: 05/04/2010 04:49:09 »

 

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