0 Members and 6 Guests are viewing this topic.
Perhaps I misunderstood an earlier post, but do you have POIS? I only ask because you said something about a contact at another Forum, so I wasn't sure if you are interested as a researcher, a sufferer or both. Thank you.
I would'nt worry about Imre1 folks. I find that he is a good guy but often confused, probably POIS overdrive and the valium he is taking.
Demografx--a definite yes to the research endocrinologist.I'm not finding the "posted results of the data form B_Jim compiled." Where is that?
If anyone can provide some modest web-hosting, I will put up my form for this.
I would like to add to the questions on the list: "do the symptoms occur after a wet dream as well? (so to exclude the possibility of psychological causes).
Here is a letter I wrote, similar to demografx, that people here are free to use or combine with demografx' and B_jim's thoughtful letter. I *strongly recommend* we compile everything in an organized manner though; we will want to do it sooner or later, so we should probably do it before we talk to very many researchers. If anyone can provide some modest web-hosting, I will put up my form for this.To whom this concerns,I am writing on behalf of a group of a least a hundred people who suffer from crippling symptoms following orgasm. We are referring to it as Post Orgasmic Illness Syndrome (POIS). These symptoms include exhaustion, difficulty concentrating, anxiety, loss of speech fluency, and cloudy mindedness; they are often severe, and can take up to a week to dissipate. These symptoms are preventing a large group of otherwise intelligent and motivated people from functioning properly. We are desperately hoping that you would be interested in studying our condition. Each of us have written about our medical history, which medications we have attempted, which tests we have taken, and our particular symptoms. Could you please read this information and provide us with some feedback? We could discuss re-reimbursement although we do not have a great deal of money. However, your research into these cases would certainly provide for interesting journal publications. There was much interest when Dr. Marcel Waldinger published some research in regards to this ailment (unfortunately he is no longer available for contact). Further, any insights you have into our condition could likely lead to groundbreaking developments towards treating connected but more well known conditions that are the focus of much current research. And any time you invest in helping us will collectively salvage hundreds of years worth of our time, which would otherwise be spent conducting amateur investigations and suffering alongside our families who are also deeply affected by association.Thanks, and please give this some sincere consideration; we are all desperately hoping for your help.
You want the posts related to what i wrote in letter ?- agjchs and DHEA other good posts :-Bizzy's theory - Dave23 protocol
For most of the year, I had completely treated "POIS" by having orgasm to sexually stimulating images when feeling affected. If I felt bad, I would have another orgasm; I would try again and again until the "good orgasm" undid the affects of the other ones. On average, I masturbated once a day to sexually stimulating images. Sometimes I would do it twice if the first one didn't work.
having more orgasms brings about even more severe symptoms.
Counterpoints writes, "The most phenomenal aspect of my case of "POIS", is that orgasm was not only the source of some of the problems, but also the cure. It took me 8 years of experimentation to find this out."
I am wondering if anyone has had a functional MRI scan, or a PET scan?
Quote from: Counterpoints on 04/06/2008 05:12:17I 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, 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. 
...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?
You have to have it [POIS] to really understand how debilitating it is.
...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?
Quote from: demografx on 05/06/2008 17:49:05Do 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.
Seems we havent really made much progressI have posted here beforeWhat 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 apartRecently 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.
QuoteI 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.
Someone on the board mentioned seeing a endocrinologist and ask him about all of this. I think its an excellent idea.