[Counterpoints]

I am wondering if anyone has had a functional MRI scan, or a PET scan?  I am very worried about damage.  My guess is that there is very little damage, although I find even when POIS free my lexical recall (my ability to remember the words I want to use in a description) is getting worse.  For example, the word for 'bench' might slip my mind, or 'shelf', or other simple words I obviously know, but just can't recall. 

I am a pianist, and I have noticed that while POIS affects the quality of my playing, it does not affect my motor control.  So I am not 'impaired' in the same sense I would be after drinking or taking most drugs, for example.

[pyropeach]

I am wondering if anyone has had a functional MRI scan, or a PET scan? 

I've had an MRI of my brain.  Everything checked out except for a very small growth (about 2mm) on my pituitary was found.  It seemed to coincide with my prolactin levels being slightly too high.  But no damage was reported.  Difficulty in recalling words is defiantly one of my top symptoms; in fact it is only now, a few days after my last orgasm, I can finally think and find words to finally write my term papers X_X

[Counterpoints]

I am wondering if anyone has had a functional MRI scan, or a PET scan? 

I've had an MRI of my brain.  Everything checked out except for a very small growth (about 2mm) on my pituitary was found.  It seemed to coincide with my prolactin levels being slightly too high.  But no damage was reported.  Difficulty in recalling words is defiantly one of my top symptoms; in fact it is only now, a few days after my last orgasm, I can finally think and find words to finally write my term papers X_X

Good luck on your papers! I hope you continue to feel well.

I meant "functional" MRI (abbreviated as fMRI).  Rather than producing anatomical pictures, this type of MRI allows one to see functional activity.  So we could see which parts of the brain are active, for example.  This could also show damage.  And Positron Emission Tomography (PET) also gives us these kinds of pictures. 

These types of scans can even be used to diagnose schizophrenia, alzheimers, bipolar disorder, and other psychiatric conditions, based on pictures of brain metabolism.

Regardless of what specific type of condition POIS is (even if it is completely psychological, which I find very very unlikely), I think a PET scan would point us in the right direction, so long as it were taken while we were feeling POIS symptoms.

[John21 (OP)]

Counterpoints, often times on the initial day of POIS I would feel mildly euphoric, perhaps closer to what is typical of "normal" people post orgasm, but these mental states could not be held for long and any positive sensation would eventually nosedive as I had to deal with the "mental change" that had occurred.  In my POIS state the difficulty in communicating verbally with others in this state was most distressing. I don't recall ever having an improvement from further ejaculation, rather it would amplify the problem. 

I have had only a basic MRI and nothing was found.  []

[demografx]

Counterpoints, often times on the initial day of POIS I would feel mildly euphoric, perhaps closer to what is typical of "normal" people post orgasm, but these mental states could not be held for long and any positive sensation would eventually nosedive as I had to deal with the "mental change" that had occurred.  In my POIS state the difficulty in communicating verbally with others in this state was most distressing. I don't recall ever having an improvement from further ejaculation, rather it would amplify the problem. 

I have had only a basic MRI and nothing was found.  []

No MRI here, but you reminded me of my earlier years' POIS, in which the first day's mild euphoria eventually nosedives. In recent years, I seem to go directly to nosedive [] - "do not pass GO, do not collect $200"

How did we all end up with this crazy, cruel malady?

By the way, I noticed that eating pasta or piza sometimes provides minor POIS relief. Anyone else experience certain foods/drink helping? (Caffeine helped, and now I'm quitting that, I simply can't moderate it successfully which leads to all sorts of probs)

[demografx]

...how could the *severe* symptoms that follow one orgasm be alleviated by a subsequent orgasm? 

When successful, is it permanent (for the current POIS cycle only) or temporary relief?

Our outside researcher will certainly have some interesting work cut out for him/her! Too bad it's unlikely we'll ever find an endocrinologist  _with_  POIS  []

[girlwind]

demografx--You mentioned carbos (like pizza and pasta) being helpful. In my case I find that it's something rich
and oily like avocados or coconut creme or almond butter on a cracker that helps calm my system down, along with
my handful of vitamins--post orgasm. I'm glad my partner has a sense of humor about that. He teases me about my
orgasmic "supplementation," and also sympathizes with the issue. He has no POIS problems, but supports and partici-
pates in a non orgasmic sex life, that he calls "riding the pleasure peak." He's happy I found a name for this weird
exhausting condition, but I know he can't comprehend the level of exhaustion that comes with it. You have to have it
to really understand how debilitating it is. I'm very relieved that this group exists and that we are all so determined
to find answers.

[Counterpoints]

When successful, is it permanent (for the current POIS cycle only) or temporary relief?

It is permanent.  I also notice that when I have a "bad" orgasm, I feel it within 10 to 40 minutes -- the symptoms hit pretty quickly.  Likewise, a "good" orgasm alleviates symptoms within the same time frame (10 to 40 minutes). 

Also, in general, I don't seem to be continously "improving" when I wait out POIS.  I will have POIS for a certain number of days, and then the symptoms improve to the point where I am POIS free within a relatively short time period (hours..).

One thing I've noticed, that I haven't seen mentioned here, is that during POIS physical exertion appears to aggravate my symptoms.

fMRI and PET are very expensive tests, so doctors are hesitant to order them without what appears to be a very strong justification.  Unfortunately our symptoms are unknown and vague enough that most doctors would not order these tests.  I think the case to have them conducted is VERY strong, however, especially with this number of people complaining of similar symptoms and the degree to which these symptoms affect us.
 

[Guthrie]

I second Counterpoints' observation that the POIS period often ends relatively 'suddenly.'  I'll be feeling pretty bad throughout it, but then often I'll just be walking along and feel the symptoms draining away pretty much all of a sudden (maybe over a period of twenty minutes or so), and then I have a feeling of relief, with a bit of a lingering aftereffect--sort of similar to what it feel like when a headache or a fever 'breaks'.  It definitely seems to be a non-continuous, non-linear recovery gradient.

[demografx]

You have to have it [POIS] to really understand how debilitating it is.

Right, girlwind! And what drives me nuts, and probably most of you as well, is that DOCTORS, who should be our knights in shining armor, fail us miserably with their blank stares and "Gee, never heard that one before...next patient, please!"

[demografx]

SUGGESTION

If anyone is in contact with a University or Medical/Research facility, if you can just obtain an EMAIL ADDRESS of "Chief of Endocrinology" or somesuch, please post it here and we can get going with an email letter from Counterpoints, B_Jim and my templates! Thank you! Or just send it yourself and post the contact here so we don't overlap one another! Thanks again!

[demografx]

...I think the case to have them [fMRI/PET scans]conducted is VERY strong, however, especially with this number of people complaining of similar symptoms and the degree to which these symptoms affect us.

Do you think that pointing to this forum + 30 pages is also good evidence? Maybe it would help to document our case with a complaint submitted to doctors and/or health plan?

Why, oh why, does our life have to be so complicated??Arrrggghhh! []

[Counterpoints]

Do you think that pointing to this forum + 30 pages is also good evidence? Maybe it would help to document our case with a complaint submitted to doctors and/or health plan?

I think it is OK, although it would be most effective to have a bunch of viewable files for each of us, which could be generated by an online submission form.  I'll work on it this weekend; I've been pretty busy at work this week.   I'll look into hosting (I have some friends who could host a web-page), but I am still hoping that someone here might be able to host it.

[demografx]

Do you think that pointing to this forum + 30 pages is also good evidence? Maybe it would help to document our case with a complaint submitted to doctors and/or health plan?

I think it is OK, although it would be most effective to have a bunch of viewable files for each of us, which could be generated by an online submission form.  I'll work on it this weekend; I've been pretty busy at work this week.   I'll look into hosting (I have some friends who could host a web-page), but I am still hoping that someone here might be able to host it.

Counterpoints, I passed along your post above to TNS as well as sending in my earlier email request. Hopefully they will host.

[Porke]

Seems we havent really made much progress

I have posted here before

What does seem interesting to me is that alot of members also describe CFS. I find this interesting because ive been suffering from CFS for some time now as well. I think somehow adrenal fatigue / Chronic Fatigue Syndrome / Heavy Metals tie into this. The symptoms for all of these problems overlap in many areas, and are difficult to tell apart

Recently ive been doing some reading on adrenal fatigue and mercury (heavy metal) poisoning or overload. It seems they are linked. My question for those with POIS is this: Have any of you had dental fillings(amalgams) with mercury in them (they are usually silver / shiny)

Im just trying to see a common pattern here....

On a side note, I have had limited success with herbal/vitamin supplements. Last weekend i tried a handful of whatever I could find in the cupboard (B vitamins, Zinc, Rhodiola... etc etc etc) and although recovery was shortened to a day or two less, I felt very weird on all stuff.

[Counterpoints]

Seems we havent really made much progress

I have posted here before

What does seem interesting to me is that alot of members also describe CFS. I find this interesting because ive been suffering from CFS for some time now as well. I think somehow adrenal fatigue / Chronic Fatigue Syndrome / Heavy Metals tie into this. The symptoms for all of these problems overlap in many areas, and are difficult to tell apart

Recently ive been doing some reading on adrenal fatigue and mercury (heavy metal) poisoning or overload. It seems they are linked. My question for those with POIS is this: Have any of you had dental fillings(amalgams) with mercury in them (they are usually silver / shiny)

Im just trying to see a common pattern here....

On a side note, I have had limited success with herbal/vitamin supplements. Last weekend i tried a handful of whatever I could find in the cupboard (B vitamins, Zinc, Rhodiola... etc etc etc) and although recovery was shortened to a day or two less, I felt very weird on all stuff.

A day or two less without POIS symptoms seems like a *really* good thing..  It definitely seems worth any side effects from vitamins you might be feeling.  I am guessing that whatever you are feeling (from vitamins) is psychological: you are taking something that is, in almost all cases, good for you.  However, I have a few suggestions.  Be extra careful with Zinc and certain elements -- it can be quite dangerous to take too much of these.  The same goes for vitamins which are stored in fat (e.g. vitamins A and D).

I am confident that POIS has very little to do with mercury poisoning.  You can get a blood test for mercury if you are worried, but my guess is that nothing worrying would show up in the results.  As far as I know, the symptoms described here are not indicative of heavy-metal poisoning.  And I can't see why orgasm would aggravate heavy metal poisoning either.  (To answer your question, I have no mercury fillings).

I also don't think POIS has any connection to chronic fatigue syndrome.

[John21 (OP)]

Porke, a couple of years ago I had all my amalgams replaced with white filling on the fear that it might be responsible. It cost me thousands and lots of physical pain as well. The anti-amalgam theories sounded plausible at the time, but now I'm doubting that mercury is the culprit, as I have had POIS symptoms since then.

[girlwind]

I also don't think POIS has any connection to chronic fatigue syndrome.

In my situation, CFS and POIS are CLEARLY related. I also know of several other people with CFS (all men) who have both low libido and POIS symptoms.
I don't assume that everyone who has POIS has CFS, but I have read and witnessed that CFS usually does affect both hormonal levels and libido.

As for the heavy metals, I have had several toxic metals show up at very high levels in hair analysis. After a round of oral chelation last year, the levels were
much lower, but not completely gone. I was planning on doing another round of chelation next month and will keep you posted on that.

Heavy metals have definite well documented adverse affects on neurological functioning, especially for the significant percentage of us who are genetically
deficient in the enzymes to effectively eliminate them from our systems. Lead poisoning in children is one cause of learning disabilities, and mercury removal
via chelation has helped some children recover from autism. In addition, heavy metal toxins are considered hormonal disruptors, and since we've all been
subjected to the "wonders of modern chemistry" since the 1950's (via exposure to pesticides, PCB's, dioxin, heavy metals, etc.), it shouldn't be a big surprise
that we've been seriously hormonal disrupted. The xeno-estrogenic effects of these substances have reeked havoc on our entire environment--from fish to
frogs to humans, from huge increases in breast and prostate cancer to astronomical increases in autism. It seems absolutely logical and highly likely for there
to be some correlation between the effects of heavy metal toxins and POIS, and I don't think we should dismiss that possibility.   

[Counterpoints]

I also don't think POIS has any connection to chronic fatigue syndrome.

In my situation, CFS and POIS are CLEARLY related. I also know of several other people with CFS (all men) who have both low libido and POIS symptoms.

Where are these people?  I don't think they are generally connected.  A majority of POIS cases do not involve CFS.

Again, I am quite confident heavy metal poisoning has little to do with POIS.  If we were to have mercury poisoning, for instance, there is no good reason the symptoms would be aggravated by orgasm, and there is also no good reason the people here would fully recover after several days.  Also, even if we  ignore both stimuli and recovery, I don't think the symptoms quite fit what have been described here.  In any case, it is quite easy to test for these things, and I would guess that a large majority of people here would not have toxic heavy metal levels.

There are a lot of things like CFS, heavy metal poisoning, diet, exercise, and so on, which affect how we feel in a way that concerns POIS symptoms, but they are not causes or cures.

In any case, I'll let the data speak for itself.  But my scientific background and intuition suggests that these things are mostly separate issues from POIS.

[Porke]

You cant view these issues separately. The reason why I brought up the mercury issue is because ive done tons of research where it not only ties in with adrenal fatigue, but ESPECIALLY with brain chemicals. Mercury accumulates in the brain. Here it disrupts neuro chemicals such as dopamine, seratonin etc etc. So my thought was everyone mentioning dopamine being too low or too high with POIS for several days. The connection comes with mercury then delaying these chemicals replenishing to their 'normal' levels.

Im no doctor, but the adrenal/pituitary/hormonal systems are all linked. If one is out of whack, it affects a bunch of other systems. I keep coming back to CFS and adrenal issues because the side effects of POIS very closely mirror the side effects of when im really under stress / not much sleep, and my adrenals are taking a whack.

Somehow I do think there is a link between these (maybe not even directly, but indirectly) and Mercury could very definitely tie into all of this

Someone on the board mentioned seeing a endocrinologist and ask him about all of this. I think its an excellent idea. Maybe just mention these other issues to him and see what he says. The body is a complex machine...