Post Orgasmic Illness Syndrome (POIS)

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7150 on: 28/03/2010 19:14:16 »

omerbasket, 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#.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7151 on: 28/03/2010 19:18:15 »

Something else that could be a productive exercise, if we would all test our minerals (at least magnesium, zinc, calcium, copper, selenium) and report the result as a percentile, as I did above. Suppose that we all happen to be above 70% for copper, or below 30% for zinc, or for magnesium, then we could gain a lot of informations. As I wrote above, Adding ZMA or some mineral to your diet for a month or two and not noticing results doesnt mean much. It can be bound to phytates if you eat lots of nuts or grains, or it could not be so well absorbed. For example on top of this page someone talks about dairy intolerance, lots of people have subclinical lactose intolerance, which cause some inflammation in the bowel but they never know. thats one way not to absorb minerals. there are many others of course

It's very reasonable to me that our body could go into a much deeper refractory period as an evolutionary mechanism to avoid depletion of something. It could be avoiding depletion of the precursors of a neurotransmetter or an hormone that is produced heavily during sexual encounters, or some ingredients of sperm, or a combination. 


Looking_for, thank you! Who would we go to for mineral testing?

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7152 on: 28/03/2010 20:25:27 »
If we have any hope to fix this is by stepping up our game to the next level. One experiment could be if several of us would do a full hormonal, cortisol, neurotransmetters test at some point, then have a few orgasms during the next 24h and then come back for another round of the same tests. Maybe also a third round of testing 2-4 days later. We could then compare with what is predicted in the litterature and see where we overreact. I know this would be expansive, but if your insurance wont pay for it i think there are pretty good test available online (for example the life extension foundation).

Neurotransmetters are hard to test, but if we each understand better the effects of serotonin, dopamine, acetylcholine, GABA, etc just by writing down how we feel for the next hours and days after orgasms, we can probably deduce a lot about how they behave.

If anyone has tried or wants to try a prolactin inhibitor like the ones I suggested, and after a few weeks of abstinence try an orgasm or two to see if the response is different. But even if that was highly successful I wouldnot ignore pregnenolone.

I could be up for both of these... obviously not both at a time, but wouldn't have a clues as to how to enterpret the tests! You could help right?

There are a couple of good urologists in Chile and likewise labs. It may be expensive, but what other way is there?

For the first test it would be best just before the orgasm, and I suppose best after a good week or two of abstention? Then the second the day after and third 2-4 days later?
How does Murphey do it??

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Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7153 on: 28/03/2010 20:44:25 »

Something else that could be a productive exercise, if we would all test our minerals (at least magnesium, zinc, calcium, copper, selenium) and report the result as a percentile, as I did above. Suppose that we all happen to be above 70% for copper, or below 30% for zinc, or for magnesium, then we could gain a lot of informations. As I wrote above, Adding ZMA or some mineral to your diet for a month or two and not noticing results doesnt mean much. It can be bound to phytates if you eat lots of nuts or grains, or it could not be so well absorbed. For example on top of this page someone talks about dairy intolerance, lots of people have subclinical lactose intolerance, which cause some inflammation in the bowel but they never know. thats one way not to absorb minerals. there are many others of course

It's very reasonable to me that our body could go into a much deeper refractory period as an evolutionary mechanism to avoid depletion of something. It could be avoiding depletion of the precursors of a neurotransmetter or an hormone that is produced heavily during sexual encounters, or some ingredients of sperm, or a combination. 


Looking_for, thank you! Who would we go to for mineral testing?
I did mine with the lab Quest Diagnostics but I read Spectracells Lab might be better for minerals. If you just want plasma levels I think this is fairly standard in any lab. RBC levels probably also not a big difference. I think some more sophisticated labs use loading methods or other dynamic testing. For example you load magnesium one morning and collect urine for 24h. that tells you how much your body wants it. I have only try a loading test for iodine so far.

Btw labs wont give you the percentile. For those whose math ir rusty, you let mu = (lower bound of the normal range + upper bound of normal range)/2. Then sigma = (upper bound - lower bound )/4. Then let z= (your personal concentration - mu) / sigma. This is your z-score. You can find the probability P(Z<z) in any normal distribution table. Be careful with signs, with a z<0 you have to do a little "reflection" to get the probability from the table.

This of course assumes that the concentration are normally distributed. For something like TSH (the thyroid stimulating hormone) you would probably expect a fat tailed on the right, not normally distributed. But for minerals i think this is a good assumption.

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Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7154 on: 28/03/2010 20:51:38 »
If we have any hope to fix this is by stepping up our game to the next level. One experiment could be if several of us would do a full hormonal, cortisol, neurotransmetters test at some point, then have a few orgasms during the next 24h and then come back for another round of the same tests. Maybe also a third round of testing 2-4 days later. We could then compare with what is predicted in the litterature and see where we overreact. I know this would be expansive, but if your insurance wont pay for it i think there are pretty good test available online (for example the life extension foundation).

Neurotransmetters are hard to test, but if we each understand better the effects of serotonin, dopamine, acetylcholine, GABA, etc just by writing down how we feel for the next hours and days after orgasms, we can probably deduce a lot about how they behave.

If anyone has tried or wants to try a prolactin inhibitor like the ones I suggested, and after a few weeks of abstinence try an orgasm or two to see if the response is different. But even if that was highly successful I wouldnot ignore pregnenolone.

I could be up for both of these... obviously not both at a time, but wouldn't have a clues as to how to enterpret the tests! You could help right?

There are a couple of good urologists in Chile and likewise labs. It may be expensive, but what other way is there?

For the first test it would be best just before the orgasm, and I suppose best after a good week or two of abstention? Then the second the day after and third 2-4 days later?

hola senor,

yes i think that would be a good plan. say 2 weeks of abstinence, then first test, then few orgasm, then 2nd test as soon as possible after. then 3rd 2-4 days. If we were part of an official study they would probably make us masturbate and take blood samples every 10 minutes to see the precise response that we have to orgasms, to compare it others in the population. But that probably wont happen. But these 3 test plus writing down your observation about your mental status (euphoric, down, clever, confused, tired, etc) should give a lot of info. For example if many others have a pregnenolone that plummets to almost zero, like it happened to me, then we could start thinking about at least why this happens or how we can fix it.

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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7155 on: 29/03/2010 02:16:33 »
Im sure there's lots that would study orgasms of pois sufferer

this guy currently (dec 09) is doing something with orgasms for example http://psychology.rutgers.edu/~brk/ [nofollow]
http://www.dintz.com/scientists-study-mental-orgasms-through-mris/ [nofollow]
« Last Edit: 29/03/2010 02:36:13 by daveyboy »

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Offline GoingCrazy

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7156 on: 29/03/2010 04:17:09 »

goingcrazy, congrats on the 5 weeks!

That's really longtime for you isn't it?

Yes thank you it was my longest so far.

Right now, day 2, I am Perfect...No bad mood and no brain fog.  The only thing I have changed was not touch my man part all day, and I slept in a different room last night.  I also ate sugar, french vanilla tea and experience no sensitivities.

I noticed that when I am POIS, I am unusually mad at everything and take everything personally.

I also agree about this hormone/prolactin/dopamine issue.  In the center of my head after "O", I notice a terrible feeling that comes on.  This is eventually relieved by spurts of "good feeling" chemicals that eventually balance the mood chemicals in my head. This all takes place over about a day for me. 
« Last Edit: 29/03/2010 04:21:46 by goingcrazy »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7157 on: 29/03/2010 04:42:22 »

Im sure there's lots that would study orgasms of pois sufferer


Sure, there are many. But they need funding.


this guy currently (dec 09) is doing something with orgasms for example
http://psychology.rutgers.edu/~brk/

http://www.dintz.com/scientists-study-mental-orgasms-through-mris/


I'll write to him and ask.

In 2009, I wrote to Beyer-Flores, his co-author of "Science of Orgasm" (no reply).

Nice find, daveyboy! (I just saw in your 2nd link above: "Dr. Komisaruk has just been offered a grant to study the male orgasm." Wow! Too good to be true. Now let us all scientifically...............cross our fingers [:)]
« Last Edit: 29/03/2010 05:16:36 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7158 on: 29/03/2010 05:02:17 »
Here's the email I sent just now, largely authored by Counterpoints and with assistance from Martin88:

Subject: Seeking help through research for a serious orgasmic-medical condition

In a message dated 3/28/2010 8:56:55 P.M. Pacific Daylight Time, [demografx] writes:

Dear Dr. Komisaruk,

                    Re: Postorgasmic Illness Syndrome (POIS)

We are asking for your precious help concerning a serious new medical condition (described below). The smallest suggestion, idea, opinion or ideally a proposition from you to initiate some research, would be very welcome and appreciated. We already have a group of sufferers who would be willing to participate in a study.

The first cases were officially described in 2002, by Dr. Marcel Waldinger (MD PhD) and endocrinologist Dr. Dave Schweitzer, MD.(http://www.ncbi.nlm.nih.gov/pubmed/11995603).  He referred to the condition as "Postorgasmic Illness Syndrome" (POIS). His study is attached.

Essentially, those with POIS usually suffer debilitating symptoms that follow within minutes of orgasm, and last for many days. The symptoms include severe fatigue/exhaustion, anxiety, severe cognitive impairment, word finding difficulty, and irritability, but there are also other notable symptoms.   Some with this condition have reported increased cortisol levels (e.g. over 200% of the upper reference for 24 hr urine cortisol).  Others have increased prolactin (over 400% of the upper reference), increased ACTH, or decreased testosterone.  Pituitary abnormalities have been found in those who have had pituitary MRI scans.  One sufferer was found to have adrenocortical carcinoma.  Over 97% of the reported cases have been from men.

Quite alarmingly, the number of reported cases is increasing at a rapidly increasing rate.  Presently, about 300 cases can be found directly (or are linked) on a UK Science forum, "The Naked Scientists", which is administrated by a Cambridge medic.  Other cases are being increasingly described by the ISSM (International Society for Sexual Medicine).

Please consider this carefully.  A helpful response could save many lives.  If you have any questions, or need more information, please ask.  Several prominent scientists with reputable university affiliations feel that this condition is in urgent need of research attention.


Best regards,
"demografx"
Moderator
POIS Forum  (representing 300 POIS cases reported, and over 600,000 + page views (visitors)
http://www.thenakedscientists.com/forum/index.php?topic=6576.0

POIS website:
http://sites.google.com/site/POISwebsite/

attached: Dr Waldinger's 2002 Research Study PDF

(Also sent a 2nd email to Dr Komisaruk, with our wikipedia entry and my cellphone number, plus all the resources from our newcomer-Welcome letter).
« Last Edit: 29/03/2010 05:33:03 by demografx »

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Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7159 on: 29/03/2010 05:34:40 »

Several sentences (including the title) sound awkward to me but English isnt my first language so maybe I'm wrong. The last paragraph sounds exaggerated, unless I missed a lot of action. I'm a researcher myself (in science, but not medical field), and I can tell you that the general feeling is that when you see an exaggeration you immediately start to wonder if any information you just read is reliable.

Also we have to understand that studies take a lot of time. You have to develop a proposal, get it approved by an ethics committee, apply for funding, plan the technicalities, run it, analyze, publish, etc. I know it would be tremendously cool to have an high tech analysis of what goes on and what is happening different for us. But if we go that route, it will take years before we can get something out of it. This is not going to be a priority for governmental funds, and private research wont tell you much until perhaps they come up with a pill and start running trials. I'm gonna try to find whats wrong with me without waiting for that. but still I should say thanks for sending the email, the more we raise awareness the more likely at some point research starts for it. We could end up on an endocrinologist who likes the idea and want to investigate more about it. Its good to have a plan B, if my plan A fails.   
« Last Edit: 29/03/2010 05:56:48 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7160 on: 29/03/2010 06:04:22 »


The last paragraph sounds exaggerated, unless I missed a lot of action. 


Which number(s) are exaggerated? Hmm, If it's the very last paragraph, maybe you're right. Thank you very much for bringing that up, I'll re-consider it on the next letter, maybe stop at "this could save lives" (we have had extremely distraught people here). And we have had some empathy expressed from researchers, but I do see what you're saying, Looking_for, so thanks again!


I'm gonna try to find whats wrong with me without waiting for [proposals, clinical trials, etc.]


Absolutely agreed. That's what I and mostly everyone here has been doing for the last 3 years.


studies take a lot of time. You have to develop a proposal, get it approved by an ethics committee, apply for funding, plan the technicalities, run it, analyze, publish, etc.


NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.


We could end up [with] an endocrinologist who likes the idea and wants to investigate more about it. Its good to have a plan B, if my plan A fails.   


I thought I had a shot with my endocrinologist, who is senior medical staff and faculty at a major (multi-billion-dollar) medical research university and hospital complex. Alas, no go.

I think we're already on Plan Z [;D]
« Last Edit: 29/03/2010 06:25:23 by demografx »

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7161 on: 29/03/2010 08:03:46 »
Looking_for_answ, i like your energy about solving pois, if you can get a prolactin antagonist  and take it before an orgasm, that would be the biggest help in drug experimentation since limejuice and i ran out to our doctors and got progesterone.  i need to let my doctors have a few months off before i push another drug on them.

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Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7162 on: 29/03/2010 17:31:26 »


NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.


interesting. ill have to read that post. if its for a high quality study i bet we can find 30 person with 1000$. 1000$ is nothing for a high quality study..

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Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7163 on: 29/03/2010 17:38:51 »
Looking_for_answ, i like your energy about solving pois, if you can get a prolactin antagonist  and take it before an orgasm, that would be the biggest help in drug experimentation since limejuice and i ran out to our doctors and got progesterone.  i need to let my doctors have a few months off before i push another drug on them.
Vitex is OTC newbielink:http://www.iherb.com/Chaste-Berry-Vitex [nonactive]
Cabergoline (dostinex) not OTC but one of those substance that people get without a script all the time. There is always online pharmacies in Mexico, India, etc that sell the same products, for cheaper, with no Rx. I used some before, never saw any quality issues. I think the same goes for bromo, but I think carbergoline might be more efficient at reducing prolactin.

besides that, your doctor's job is to get you back to health. If he doesnt know how, his job is to prescribe to you what you tell him. just look on pubmed, find a study that suits you, print it and show it to your doc and say this is what i want. if you know what u r talking about and present a study, he will feel more or less protected and will write you a script. else just change dr

edit: another route we could try (still to reduce prolactin) to see if it helps is to increase dopamine right from the start instead of just after orgasm as i had suggested. most likely less effective than the first plan, but still worth a try. l-tyrosine, niacin and P5P should help. l-DOPA (also OTC) even stronger
« Last Edit: 29/03/2010 20:22:07 by Looking_for_answer »

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Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7164 on: 29/03/2010 18:47:40 »
Has anyone ever tried Piracetam (a nootropic) for their POIS symptoms?

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Offline Looking_for_answer

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7165 on: 29/03/2010 21:53:46 »

would toco-8 be tocopherol aka vitamin E ?

Yes your right.


mister_z, your guess is as good as mine! Unless "anonymous sufferer" comes forward we won't know. But don't worry, mister_z, this is the first time in 2 years since the forum started that this type of anonymous posting has occurred.
 

Hi all,

I report back now after several months of no symptoms of POIS that I have fully cured my POIS by reimbalancing my hormone  and neurotransmitter levels.No more depression, mood swings, headaches/mirgraines/foggy brain/muscle and joints pain, exhaustion, inflammation of the eyes, stomach bloating, indigestion, diaheera, stomach pain & cold,flu like symptoms after an orgasm.

You can check in my last few posts that I said I was getting furthur hormone bloodwork,  saliva and urine neurotransmitter tests done and would take the action necessary to reach optimal hormone levels.

The short version :

Low total+Free/Bio testosterone levels
Low Cortisol & Dhea levels = Adrenal fatigue
Low-Mid range Thyroid (Free T3)
Very High prolactin levels
High Estriol+Estrone levels
High Progesterone levels
Low Dht levels

Very Low Serotonin levels
Very Low Gaba levels

I made a big mistake by going on testosterone cypionate shots but i was lucky I did not completely shut down my HPTA and desensitise my testes Lh signals as I was shooting HCG* E2D to keep the natural production of T from completely shutting down.

I then had to use HCG+HMG/FSH+Toco8 to fully restart natural t production to optimal levels as I did not want to stay on T shots for life.I found that by eating more red meats, eggs and in general more protein and less carbs helped with the restart.It was not a easy process though alot of ups and downs.

I burnt my adrenals out in my late teens by overtraining in boxing and mixing that with overdrinking spirits(straight bottles of vodka, brandy etc) and taking too many stimulants and partying with very little sleep for a few years.I didnt notice the adrenal fatigue till around age 21 in my trip to New York.

Iam using 6mg of Medrol, 5mg Dhea sublingual+15mg dhea cream, Maca, Pantothenic Acid and Vitamin C to heal my adrenals. I also had a period where I would sleep in for 10-12 hours and take naps often in the day.

The cortisol from the medrol is used from the body and that shuts down the bodies own production of cortisol which gives the adrenal glands time to recover.

After starting on Medrol for around 4-6 weeks, I then started
on Armour 1/2 grain and increased 1/4 to 1/2 grain every 2 weeks too 2 grains.

I understand I will need to wean of both Medrol and Armour after 6-24 months depending on the individual.

I had very high prolactin levels which is the cause of crap libido and very slow refractory periods after an orgasm and also can cause headaches/migraines and an overall foggy, drained feeling.

I used Cabaser/Dostinex/Cabergoline(All same drug) to lower to 1/4 of the lower range which is perfect.Now I sometimes use the USP supplement Powerfull when I want to go more than once which has scientifically been proven to reduce prolactin levels and increase testosterone and dopamine levels.

I improved my good to bad estrogen ratio by taking calcium glutarate and Broccoli extract to lower the high estrone and estriol.

The very low serotonin and gaba levels which caused me anxiety, depression, mood swings and often in the past heart palpitations was cured easily by taking gaba and 5htp.

I had to drink a glass of orange juice everytime I took a 5htp tablet to make sure the 5htp would pass the brain barrier and also I found that gaba sublingually was more effective than standard oral tablets.

I was stumped on the high progesterone levels and low dht levels for a while. I looked everywhere on how to lower progesterone directly but the only sources I found proven to lower progesterone was to increase dht levels.

Luckily for me that by increasing my testosterone levels, some of the increased testosterone converted to dihydrotestosterone and then lowered my progesterone levels
 :)

I guess when you sort one thing out it will reach to the rest.

Once my DHT+Test levels were near the top of the range, E2 mid range and Prolactin was within 1/4 of the lower range this is when I feel my best for libido, overall physically feeling a hell of a lot stronger and very confident mentally.

I do still monitor my hormone levels every month or 2 as sometimes I get lazy with supplements and diet or I have a period of eating crap junk food .. lol

oh ... I solved my stomach bloating and indigestion by taking Hydrochloride Betaine, Q-Zyme Digestive Enzyeme blend and primal defense Ultra probiotic formula.

I recommend everyone to have their hormones and neurotransmitter checked either through their local gp/dr or through an independant lab, ZRT, Quest etc

Hormones:

Total+Free/Bio Test, LH+FSH, Estradiol(E2), SHBG, Prolactin, Cortisol(Saliva, morning, noon, evening, night), Dhea, IGF-1, Progetesterone, Dht, Free T3 (Free T4,TSH if possible),

You will know exactly what is wrong and there would be no more second guessing :)

Remember even if you have already had hormone tests done and your doctor says you are fine or normal. It usually isnt the case as they do go by ranges only and not age to range.For example :

A 70 year old male could have a Total testosterone level of

350 with ranges of 250-850

but a 21 yr old could have the same level yet most drs will say you are normal because you are within range.

The dont tell you that 250-350 test level is normal for a 70-80 yr old and the upper range 800+ is normal for a late teenager or early 20s. Obviously we feel the best when our t levels are higher than lower.

A good doc would do furthur tests like E2, Prolactin, Cortisol, Free T3, SHBG and others to check what is causing the low t levels even if it is within "range".

It happened to me and I let it go for years thinking there was nothing wrong with my hormone levels until I started to do my own research and studying many Anti Aging Specialists posts on the anabolic and metaphorsis forums.


I did all my tests at home even the blood tests (just a simple pr.ick of the finger) and did them the morning after an ejaculation. This way it showed me exactly what was going wrong in my body during the symptoms of POIS.

I kind of knew I had low testosterone as I had no drive for life, no libido and felt like sh1t in general and lost a ton of strength and muscle and gained alot of weight in fat.

I also guessed I had adrenal fatigue due to having no energy all day and night dispite sleeping 10-12 hours. I didnt want to speak to people and even had social anxiety due to the crap adrenal fatigue but the good thing is that I have it no more :)

I had no idea about the high prolactin, low DHT, high Progesterone, High estrone & Estriol(Bad estrogens) so it is best to get everything checked as much as possible.

hmmm ... i think thats all for now, any questions please fire away.

Michael




*HCG

Benefits of HCG supplementation:
1. Aesthetic maintenance of testicular size
2. Maintaining activity of testicular Leydig cells - promoting natural testosterone production - preventing primary hypogonadism
3. Improving sex drive greatly (perhaps more so than just with testosterone replacement

HCG acts like LH (Luteinizing Hormone).

LH has several actions, such as:
1. It stimulates testosterone production from the testes
2. It stimulates the production of aromatase enzyme
3. It stimulates the production of Cytochrome P450sc enzyme

Written by a Physician, Psychiatrist, Behavioral Neuroendocrinology, Immunology, and Nutrition = Psychiatry in Dr Romeo B. Mariano.

The above was taking from my posts made several months back.

**** this board logged me out im not rewriting my whole answer, anyway my basic point was good job buddy, your starting hormonal/neurotransmetters profile is very similar to mine right now and i think its probably the case for many people here. you took control, i love it.

If Michael still drops by, how are you now? can you remain well without medication or have you cured permanently? how was your pregnenolone before you start and now? what about your LDL/HDL cholesterol before and after?

the only thing i dont like with that procedure is that it brings you artificially back to an hypothalamic-pituitary-adrenal-gonadotropic axis equilibrium, and I fear that I will not stay at that equilibrium forever if i dont do more. i mean i think there is a reason why we were more prone to develop POIS, and its not genetic. so im trying to fix my hormonal/.. profile as you did, but only using orthomolecular medicine principles, change of diet, exercise, much of the right, high quality OTC supplements to rebalance all minerals, vitamins, amino acids, etc its so much work.  if that hasnt worked within a year or two ill go for the pharma route as you did. but fixing everything artificially is nearly impossible. for example i suspect my bad copper/zinc ratio to also make me prone to ADHD type symptoms. my iodine levels are too low, etc. i think fixing every single thing with medicines is probably possible, but not permanently (ie without some medecines for life).

btw for everyone reading this, pregnenolone is OTC if you want to try. some people claim it stimulate its own production, i dont know if its true
if i was gonna have an orgasm soon i would take vitex for a while before, to see if it helps, but for now i prefer abstinence
ill drop by in a month or so
i suggest we do a wiki page, say pois.pbworks.com where we could document what pathways were experimented with (and with what) in a wiki manner, formally, with links. etc  for for now its likely irrelevant to me cauz im gonna run the program i wrote above first. but i suppose i could modify it along the way if something great comes out of the wiki
« Last Edit: 30/03/2010 08:30:22 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7166 on: 30/03/2010 01:55:14 »
NORD

On Jul 17, 2009, at 11:18 AM, Stefanie Putkowski wrote:


Hi [demo],
 
We do not know of an organization or individual who has the resources to research this specific condition.
 
However--one strong possibility would be for you (and others struggling with POIS) to form a formal patient organization dedicated to raising awareness and raising research funds for this debilitating disorder. As NORD's research program administrator, I can assure you that the researchers are there--they just don't have the funds.
 
NORD can provide guidance to you on forming a patient resource organization.  We have helped countless groups of people suffering from rare disorders to form patient organizations, many of which have taken off with fabulous success!  It can't be done by one person--you would need help from your fellow sufferers. It does not matter if they are overseas or across the USA--all you would need is the will to form a true patient resource group and the ability to use a computer.
 
NORD printed an article on raising funds for research, and published it in our Spring 2008 newsletter.  The three individuals/families who were at the heart of the article had no experience, whatsoever, in forming groups or fundraising.  I can send you that article if you'd like to read it, and you could feel free to forward it to your group.
 
That's just some food for thought--but it is very realistic, I can assure you from our experience here at NORD.
 

Sincerely,

Stefanie Putkowski, RN, BSN
Clinical Information Specialist
Research Program Administrator
National Organization for Rare Disorders

Join our online community
http://nord.clinicahealth.com/

NORD Subscription Service
http://www.rarediseases.org/programs/subscriptions


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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7167 on: 30/03/2010 01:59:09 »

The idea above is for us to raise $30,000 by hosting neighborhood barbecues and the like. Difficult, I explained to Stefanie, since this is a sensitive subject, and not something we wish to broadcast about ourselves, e.g., "Come on over to our barbeque so we can ask you for money to help our problems with orgasm."

But I re-printed the email to show you that they are friendly to us. Much more than I can say than ANYONE or any other organization that we have contacted

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7168 on: 30/03/2010 02:50:33 »
i got results back for progesteorne it was .9ng/ml range <1.4ng/ml no starting range
and converted to nmol/l which equaled 2.862nmol/l
looking at dr.dexter's article the in range for progesterone
.7 - 4.3nmol/l.

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7169 on: 30/03/2010 03:12:54 »
my progesterone was high, i am going to do a bunch more tests on Friday.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7170 on: 30/03/2010 03:33:16 »
my progesterone was high, i am going to do a bunch more tests on Friday.

could ldn affect your results..

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Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7171 on: 30/03/2010 15:00:20 »
Has anyone ever tried Piracetam (a nootropic) for POIS?

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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7172 on: 30/03/2010 19:39:22 »
Hello to you all!
My name is Omer, I'm 21 year-old and I'm from Israel. Excuse me if I have some mistakes in English... It's not my primar language.
I have both fibromyalgia an Crohn's Disease, and they both started about 2.5 years ago. It was around that time (or perhaps just a few months later, not sure) that I started to feel more pain -  like my fibromyalgia pain, which is and all-over-the-body pain and itch - but more severely, after masturbating. Today I have absoulutely no doubt that the pain becomes more strong after masturbating. And also, my body is more itchy. About things such as concentration and fatigue - which are also common for people with fibromyalgia, wnd which I also feel - I can't tell for sure if they are worsening after masturbation.
Anyway, it's not a known fibromyalgia symptom (although this feels just like my fibromylagia physical symptoms - just more severe), I started seeing doctors for this just lately. I had only one experience with a drug prescribed to me in order to try and ease my pain: Seroxat (SSRI). The doctor told me to take it about 4 hours before masturbating. I also take, for my fibromyalgia, Cymbalta (SNRI), So at first I took those two drugs almost at the same hour. In the first few times I felt better than I used to feel after masturbating. But after those times, taking the drug had no effect on me (I think it was a time or two after having dissapointment with Seroxat that I stopped taking Cymbalta in the same hour, because usually I take it wround 19:00, and I thought it might have negative effects on my pain when I took it around 13:00 on one day, taking it about 19:00 on the other day). Anyway, as I said, it was after Seroxat begun not-to-work for me. Perhaps the effect of Seroxat was a placebo effect (and anyway, I still had pain after masturbating in those first few times, just a less sever pain than the usual post-masturbating pain), and perhaps the lighter pain in those times was just a coincedence.

Anyway, there are two tests I had in the past (not realted to this issue) that I'd like to share with you, see if you have any insights about them. The first was taken in february 2008:
1) TESTOSTERONE - TOTAL 12.5 nmol/L (usual numbers are 8.4-28.7)
2) FSH - 0.9IU/L (Which is a bit low, because as far as I know the normal is at least 1IU/L)
3) LH - 3.3IU/L (Which is normal, but close to being too low, as LH should be between 1 to 20 IU/L).

A test from September 2008:
1) FSH - 0.8IU/L (Again, low. By the way, this test as well as the one from febuary were taken in the morning).
2) DHEA SULPHATE - 4.42 (Normal, suppose to be between 2.17 to 15.2)
3) CORTISOL-BLOOD - 421nmol/L (Normal, suppose to be between 138nmol/L to 690 nmol/L).

I tell you this because I know one of the medications that did succeed for some of us is testosterone.

I also have my eye on dopamine, and a few days ago I was diagnosed as having adult ADD, so soon I'm suppose to start treatment with Ritalin LA or Concerta - and if I'm not mistaken, they sholuld elevate my dopamine levels, at least temprorarily, so I shell see if that would make me feel better also after orgasm.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7173 on: 30/03/2010 21:17:09 »
on sudden hike of prolactin being the problem.
demographx used to use adderall - which is a potent dopamine stimulator, and he sill has symptoms. This suggest prolactin is not the problem since dopamine and antagonist of prolactin.

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Offline CertainlyPOIS

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7174 on: 30/03/2010 21:19:17 »
Has anyone ever tried Piracetam (a nootropic) for POIS?

no, but it seems has powerfull as using cerebrolysin. Do you think it is something almost all neurologist will know about.

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Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7175 on: 30/03/2010 23:25:01 »
The semen would literally pour out when no contractions (orgasm) occur,
quite odd to watch!
I still could keep going (erection) and feel fairly energetic.

In terms of POIS, this had no severe effects anymore than if I had not ejaculated (some tiredness but simply being turned on had always previously caused some pois anyway).
It was the contractions of the orgasms that caused the real fatigue problems.

I'm still confused about which way around is which, but in my experience, for me, ejaculation with minimal contractions makes me feel a lot worse than if I exagerate the contrations. Don't have a clue as to why, but alas....
How does Murphey do it??

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7176 on: 30/03/2010 23:37:02 »
Has anyone ever tried Piracetam (a nootropic) for POIS?

no, but it seems has powerfull as using cerebrolysin. Do you think it is something almost all neurologist will know about.
Piracetam looks like it might be interesting to try, it looks like it is an otc supplement in the united states, and helps get oxygen to the brain.  cerebrolysin is considered the best nootropic medication .  i have a prescription for modafinil(provigil) which is a prescription nootropic, they give it to astronauts now instead of amphetamines.

here is some good info about nootropics that are otc supplements
http://www.imminst.org/forum/index.php?showtopic=36691&st=0&start=0

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Offline lauracostis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7177 on: 31/03/2010 01:26:07 »
my progesterone was high, i am going to do a bunch more tests on Friday.

could ldn affect your results..
its possible, i dont have any progesterone tests before i started ldn,so i cant really say.  i dont know of any physiological affects that ldn would have on progesterone.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7178 on: 31/03/2010 02:01:16 »
Piracetam and other "smart drugs"
'A friendly word of caution'


http://www.deuceofclubs.com/write/drugs.htm
« Last Edit: 31/03/2010 02:14:23 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7179 on: 31/03/2010 02:05:14 »

Oxygen Bars

I have recently become intrigued with the postings here on oxygen, so I've been looking for an "oxygen bar", a place where you can walk in, sit down and order a drink...er, I mean...some oxygen.

So far, most "oxygen bars" seem to be places that sell the equipment, though.

               

                          POIS Bar & Grill???
« Last Edit: 31/03/2010 02:12:56 by demografx »

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Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7180 on: 31/03/2010 04:43:15 »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7181 on: 31/03/2010 06:41:13 »

http://www.erowid.org/smarts/piracetam/


RhythmSpring, I don't understand, what's your conclusion with erowid? How does it relate to my posting 'friendly concern' about piracetam? Please don't just randomly post links here as reply to others' links without explaining. This is a forum. A discussion. Thank you.

Example of conclusion, below: This study shows that "piracetam is not better than placebo in the recovery from cognitive deficiency."
Journal of Postgraduate Medicine
http://www.jpgmonline.com/text.asp?1980/26/2/116/985
« Last Edit: 31/03/2010 09:03:33 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7182 on: 31/03/2010 06:57:08 »
omerbasket, 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:
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 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!
« Last Edit: 31/03/2010 19:50:46 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7183 on: 31/03/2010 06:58:36 »

omerbasket, 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#.

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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7184 on: 31/03/2010 11:20:58 »
Thank you all!  [:)]

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Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7185 on: 31/03/2010 13:46:06 »
Porke:
Yea man, doctors will only admit there is a problem if you are COMPLETELY out of range in a blood test. This goes especially for hormonal levels. The level of testosterone is like 200 - 800. So if your @ 205 they consider you normal, but you are def not at your OPTIMAL level of function.

With regards to Porke's comments, in my experiences with doctors over the years, this is spot on. It is something that annoyed me in regards to my test and GH readings. At least these days you can get copies of your results. In the past (>20yrs) you generally would not be shown your results so you would never know. In decades past there used to be this mindset that the doctor knew all and you were a medical illiterate patient who wouldn't have the capacity to interpret any test result. Things are a lot better at least in that respect.
« Last Edit: 31/03/2010 13:47:56 by acronym »

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Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7186 on: 31/03/2010 14:14:53 »
hey everyone,

Ive been thinking about what/or if there could be a conventional scientific therapy for POIS with the technology currently available which could help people recover quicker.
Im pretty sure during the days of POIS there's a lack of Oxygen in the blood and to the head.

Daveyboy - I think there is merit is this interpretation of a major aspect of pois. I have never tried oxygen treatment because it always seemed an expensive option.
I can relate to it from the foggy mind aspect (frontal lobe congestion). I have also had a blood test that measured the oxygen to carbon monoxide ratio in my blood and got a poor result. (No treatment option was provided to assist in reversing this). I also had a brain spect scan (day after an O) and it came back marked as being not noraml in relation to blood flow. It was clear to see the RHS did not match the LHS in the scans I saw. Many CFS patients have poor brain scan results as regards blood flow.
I was initially offered an alzheimer drug, but because I did not suffer from the condition it was not subsidised and I think it was going to cost me near couple hundred dollars a week with no end point. (I did not notice any benefit while on it, but I took lower dose to make the drug last longer). I also have very low IGF-1 and this effects brain metabolism and I am pushing my doc to deal with this.
As regards the piracetam post...I have not tried this, but I did try the nootropic drug hydergine. I did notice an improvement in alertness but it was nothing too dramatic. A Red Bull drink would match it.

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Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7187 on: 31/03/2010 14:42:48 »
daveyBoy wrote:
"Because of this, I dont feel POIS has much to do with semen."

I've oscillated on the seamen vs orgasm concept over the years. I notice pois is not as bad with vigorous sex as it is with masterbation for me. I tend to agree with you, but then why aren't there a lot more women logging on here if it was simply the orgasm. Even theories that link pois to candida and diet or prolactin or pregnenalone should still encompass women as sufferers. What is it about the male physiology that makes us suffer so. Testosterone is not the complete answer.

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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7188 on: 31/03/2010 14:58:05 »
Ok, so I saw that you were talking here about prolactin (I didn't yet read what you said about it - you know, I have more than 300 pages here to read...) and I have some kind of a theory about it (I don't know if that's my leading theory about the cause of POIS, it's just one theory):
I read that Prolactin reduces LH and FSH levels. Since, as I wrote in my previous message, both my FSH (which is under the normal values) and my LH (which is in normal values, but in those normal values it's pretty low) are low, It might make sense. Also, if I'm not mistaken (and please, correct me if I am) one of the things that might have an effect on us is drugs that increases the level of dopamine in the brain. Prolcatin, as far as I read, regulates or perhaps decreases levels of dopamine, and dopamine regulates levels of prolactin. These are two intersting lines I've read on the internet:
1) "Dopamine. Prolactin inhibits dopamine release, such as after orgasm, and is chiefly responsible for the refractory period".
2) "Dopamine gives you that feeling of wanting. One of the greatest dopamine blasts are from orgasms. But after the dopamine kicks in at the peak of the orgasm, a different chemical is release. Prolactin. Prolactin regulates dopamine levels, keeping them from getting to high. It also puts a damper on romantic affairs. Prolactin is what causes men to want to roll over after sex instead of cuddling. Womens reactions are usually later. This causes alternations in the couples dopamine levels".

So... Let's say this: perhaps the cause for our syndrome is dopamine (or even something else), but the cause for the problem with dopamine is prolactin? And this too, goes in two ways:
1) It might be that we have insufficient amounts of dopamine in our brains - and that after orgasm, due to prolactin, we have even less? (But, shouldn't the amounts of dopamine return to what they were before orgasm? And if we felt good before orgasm, and we have now the same amounts of dopamine, why don't we feel good now, after orgasm?).
2) It also might be, that we have sufficient amounts of dopamine in our brains, but for some reason after orgasm there is too much of prolactin which is releases, and the prolactin reduces too much of the dopamine amounts.
(and the third option should be a combination of the two first options).

So, I see here at least two ways that prolactin might cause this, or at least be involved: By decreasing hormones such as FSH and LH, and by decreasing the level of dopamine.


However, there are things that might contradict that. For exapmle, in the two case reports by Dr. Waldinger and Dr. Schweitzer, which demo kindly sent to me, the patients did have normal levels of FSH (I mean, one had normal levels and another had too high values of FSH - but definitley not too low as I suggested) and of LH (even though the one with regular levels of FSH did have a LH level which is similar to mine - he had 3.2 U/L, which is a bit low on a scale between 1.5 t 12 U/L, and I know of a scale between 1-20 U/L). Also, one of these patients - the one with high levels of FSH - was tested for prolactin, and he had a normal prolactin level (210 mU/L, while the scale is between 75-275 mU/L).
 
I would very very much like to here your opinion about it. I'm not a scientist and I might be missing things here. Also, excuse me if such things or responses to these things were written here before. This is a 304 pages thread (EDIT: now 305... and counting :-) ), and even with searching tools I think it would be very difficult to get answers.
« Last Edit: 31/03/2010 15:06:34 by omerbasket »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7189 on: 31/03/2010 17:48:51 »

Thank you all!  [:)]


Omer, stick around, I'm sure we'll be thanking you as well for sharing all your experience with us! And thank you for all your contribution and trusting us so early in your participation at the forum [:)]

ps - Omer, I would highly recommend that you also test for "free testosterone", in addition to total. My endocrinologist and GP both feel that this is important. I think others here agree as well.
« Last Edit: 31/03/2010 17:58:50 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7190 on: 31/03/2010 18:04:11 »
Chat Room

I just wanted to report that I had a wonderful time chatting at length with another POIS forum member yesterday at the Chat Room.

When you go, keep in mind that some Delphi Forums (our host) people "wander" in to the Chat Room who do not have POIS. But they are generally friendly, and if you have confidential things to say to others about POIS with other people in the room, you can always use the "Whisper" function, which will keep it private between you and your chat partner(s).
http://forums.delphiforums.com/POIS/chat

ps - if other (non-POIS) visitors become too distracting, let me know and we can make the Chat Room more private (by not posting the name "POIS Forum" in the public directory).
« Last Edit: 31/03/2010 19:45:29 by demografx »

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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7191 on: 31/03/2010 18:20:32 »

Thank you all!  [:)]


Omer, stick around, I'm sure we'll be thanking you as well for sharing all your experience with us! And thank you for all your contribution and trusting us so early in your participation at the forum [:)]

ps - Omer, I would highly recommend that you also test for "free testosterone", in addition to total. My endocrinologist and GP both feel that this is important. I think others here agree as well.
Actually, yesterday I wrote the same stuff in my notebook (to remind myself to do that).

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7192 on: 31/03/2010 18:37:31 »

Omer, someone recently said it well about testosterone. I agree: for those of us whose POIS can be helped with T-treatment, MORE T than the average person needs is important, just in my opinion. I don't think we can be satisfied with just normal to low ranges. Of course this treatment should be administered and monitored very carefully, preferable with an endocrinologist.

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7193 on: 31/03/2010 18:41:47 »

Omer, if you're around, come on over to the chat room and we can.......chat [;D]
http://forums.delphiforums.com/POIS/chat

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7194 on: 31/03/2010 20:02:12 »

Yea man, doctors will only admit there is a problem if you are COMPLETELY out of range in a blood test. This goes especially for hormonal levels. The level of testosterone is like 200 - 800. So if your @ 205 they consider you normal, but you are def not at your OPTIMAL level of function.



With regards to Porke's comments, in my experiences with doctors over the years, this is spot on. It is something that annoyed me in regards to my test and GH readings. At least these days you can get copies of your results. In the past (>20yrs) you generally would not be shown your results so you would never know. In decades past there used to be this mindset that the doctor knew all and you were a medical illiterate patient who wouldn't have the capacity to interpret any test result. Things are a lot better at least in that respect.


Hi, Porke, and acronym, I certainly agree with Porke's "barely normal is not OPTIMAL" conclusion, but please allow me to disagree with the FIRST part of Porke's post - about doctors not willing to admit to a problem.

When I was tested "normal" a few years back, I screamed and shouted to my GP and my urologist about needing testosterone for POIS. (I quoted 2 specialists, Dr Waldinger and a highly regarded Czech sex researcher). It worked (they probably just wanted to get rid of me, finally  [:D]), and they gave me T-injections with monitoring. They did put me through hoops trying to discourage me (I had to buy the stuff myself, running back and forth to the MD's and arranging shots with the GP's nurse), but I still got my way.

I'm now on T-patches and they work very well for my POIS. For that, I was tested in a much more sophisticated lab and with a highly regarded endocrinologist who is sympathetic to POIS.

CONCLUSION: we simply have to be more aggressive and take charge with physicians. If they balk, move on until you find a doc willing to "play ball"............with YOU! The fact is, when it comes to POIS: WE KNOW MORE THAN THEY DO!
« Last Edit: 31/03/2010 20:22:19 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7195 on: 31/03/2010 20:06:33 »

NORD (National Organization of Rare Disorders) is willing to take that on for us (see previous posts on NORD). But they want $30,000 minimum, which we don't have.


interesting. ill have to read that post. if its for a high quality study i bet we can find 30 person with 1000$. 1000$ is nothing for a high quality study..


Looking_for, as I mentioned, people at this forum have committed to about $4,000. If you have any ideas how to raise more, please say!!!
« Last Edit: 31/03/2010 20:17:07 by demografx »

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Offline omerbasket

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7196 on: 31/03/2010 20:45:27 »

Omer, someone recently said it well about testosterone. I agree: for those of us whose POIS can be helped with T-treatment, MORE T than the average person needs is important, just in my opinion. I don't think we can be satisfied with just normal to low ranges. Of course this treatment should be administered and monitored very carefully, preferable with an endocrinologist.
Thanks for the advice. As you mentioned later, I think it would be hard to get it. Anyway, I don't know yet what I want. I guess I'll wait until I start usin Concerta/Ritalin LA, than try again, and than go to the doctor treating me for this POIS issue (He is a psychiatrist and sexologist) and see what he thinks we should do next, according to the results under Concerta/Ritalin LA. In my mind, other treatments might be Weullbutrin (or other drugs that increase the level of dopamine in the brain), Testosterone or Bromocriptine (inhibits production of prolactin), but perhaps there would be other treatments that might fit as well.
« Last Edit: 31/03/2010 20:47:48 by omerbasket »

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Offline prism

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7197 on: 31/03/2010 20:53:11 »
ok, Price of Oxygen:

1) Oximeters - measure Oxygen Sp02 levels (saturation) in blood and pulse rate.
from $40 (25) from ebay
to $300.

2) Oxygen cylinders like on oxyfit.co.uk
20 for 8 litres, 100 for 110 litres for 55mins.
(they dont sell to US, but there maybe similar companys in US)

3) Home Oxygen Concentrators - provides as much direct-to-mouth 90% oxygen as you want (no refilling, converts air to oxygen).
from 450.00 US dollars (230) from ebay from China or Australia. (certainly affordable).
to around $3000 for more sophisticated models.

4) Home-use Hyperbaric chambers
$5000-$30,000.
(it would certainly be an "eccentric" type purchase!... but I know friends who spend double that on new cars)

First, please be careful
I HAVE NO IDEA IF THESE WORK, WILL WORK, WILL HELP, OR ARE EVEN SAFE!!!
dont waste your money (I'll feel very guilty!)
without doing your research
AND SEE A GP FIRST

It was just a suggestion oxygen might help.

It would be good if someone could get some research done to see if the POIS effects are similar to/or a lesser version of the
'the bends' or Decompression Illness.
If it is, POIS symptoms could be potentially instantly treated.
Hyperbaric chambers are used to treat 'the bends' but I dont know if the home use ones do this!
'Decompression Chambers' maybe slightly different.
I really dont know.

Doctors who specialise in 'the bends' or (even top divers) will know what to measure in the body.
Im sure a doctor like this will be willing to help and carry out tests either way, even if you have to pay to use their hyperbaric chambers + get the expert monitoring.
If the hyperbaric chamber makes you instantly well and diffuses POIS then, i guess, its decision time on what to do about it, whether to get one.

Again, dont get your hopes up too much, all this is pure speculation.

There may be more simple local 'Oxygen therapy' specialists who can give you oxygen at a therapy type hour rate and expert analysis.
There may be local divers who have the more full-on chambers who can help.

http://en.wikipedia.org/wiki/Decompression_sickness [nofollow]
« Last Edit: 13/11/2014 08:45:36 by chris »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7198 on: 31/03/2010 22:14:18 »

I guess I'll wait until I start usin Concerta/Ritalin LA


In addition to the testosterone, stimulants such as the above have helped my POIS, as well as my overall ability to concentrate/focus.

I have just had major, open heart surgery, so I'm concerned about the stimulants, but my team of doctors, including my surgeon, my cardiologist, my psychiatrist and my GP are all ok with it. I have nevertheless continually reduced the doses.

Low doses are one of the secrets to making stimulants work for those who respond. The low dosage prevents addiction and maintains effectiveness because the body's tolerance doesn't increase.
« Last Edit: 31/03/2010 22:43:50 by demografx »

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Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #7199 on: 31/03/2010 22:16:41 »

daveyboy, thank you for your oxygen post AND for expressing safety concerns!

I'm still looking for a good, old fashioned neighborhood bar [;D]
« Last Edit: 31/03/2010 22:18:52 by demografx »