[Counterpoints]

Counterpoints, I am leaning toward not showing responses immediately to the university rainmaker, but saying we have it. At this stage I just want to get him interested in us at a "warm and fuzzy" level. If he shows interest, then my thinking is to show him the summaries, etc. on the second round, as we did with the first set of researchers. Do you agree?

Your call. I think it would be helpful to show him the group 1, 2, 3 symptom lists we made, though.  It's great that your endocrinologist seems interested in helping.

[John21 (OP)]

Demo,

Question to us from the endocrinologist:
"Does anyone here have experience with tricyclic antidepressants, such as Tofranil, and POIS?"

No, I have never been on these.

PS Nice work with the endocrinologist. 

[demografx]

I think the direct link between Pois and neurotransmitters is maybe not the good way.
The indirect effect of anti-depressant is much more interesting for example : some ssri's => oxytocin.

B_Jim, does the "indirect effect...some ssri's => oxytocin" mean that some ssri's affect oxytocin, and then oxytocin affects depression?

[demografx]

Nice work with the endocrinologist. 

John, many thanks!

[demografx]

LETTER TO UNIVERSITY ENDOCRINOLOGY GROUP

Re: PATIENT OF/RECOMMENDED BY DR. X

Dear Dr Y,
(cc: Dr X)

I am a patient of Dr. X. When I mentioned to Dr X that a study of my illness on a larger scale is desperately needed, he recommended me to you to see if a medical research study could possibly be conducted - and perhaps initiated by you.

I, and many other people, are afflicted by a syndrome called Postorgasmic Illness Syndrome (POIS), which is characterized by a number of symptoms immediately following orgasm that can last up to 2 weeks. It causes much agony and because of the recurring symptomatic period as well as the constant anxious anticipation of the next inevitable episode - normal lives are disrupted severely. Mine certainly has been. The only surefire relief is to abstain from sex.

As an example, below are my symptoms following orgasm,
which last 3-4 days:

moderate to severe exhaustion
all fingertips "dry/burning", "numb", dermatitis
emotional numbness
brain fog (poor concentration)
excessive yet nonrefreshing sleep
depression
irritability
anxiety
impaired creativity
impaired memory

Very little research has been done on POIS. The only formal paper that I know of has been written by Dr Marcel Waldinger and Dr Dave Schweitzer of The Netherlands, in 2002, which I have attached.

For about the past two years I have been moderator of a forum on the Internet
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new
that has rapidly grown to 150 known POIS sufferers.

The forum members are constantly organizing and updating our database, representing many background experiences of sufferers around the globe, and forum discussions regarding experiments of relief medicines and supplements, and profile similarities and differences among members of the forum.

I have attached a sample questionnaire that has been filled out.

An excellent Video summary of our condition was made by one of our forum members:

Dr. Y, I sincerely hope that you can help us. I am available to get together at your convenience and would like to call your office next week to see when might be a good time to discuss this, in person or by telephone.

Thank you and
Best regards,
[demografx]

[girlwind]

I am leaning toward not showing responses immediately to the university rainmaker, but saying we have it. At this stage I just want to get him
interested in us at a "warm and fuzzy" level. If he shows interest, then my thinking is to show him the summaries, etc. on the second round, as
we did with the first set of researchers. Do you agree?

Great letter Demo--

I definitely support your modus operandi regarding the "warm and fuzzy" thing. It will depend, of course, on the
afore mentioned doctor's capacity for warm fuzziness... Also, it will probably take some time to get him interested
in us as a forum of free thinkers, not all allopathically oriented, and all the many NATURAL remedies that we have
found to be effective. That's in addition to the Levitra that you use.

It really is like a poker game.  [8D] [8D] [8D] The warm fuzzy cards followed by the big (and depleted) royal flush.   [:0]

[demografx]

Great letter Demo--

Girlwind, thank you very much. You helped to make it all happen sooner by helping me make my initial visit more efficient/productive so that I could help myself and the forum in one meeting. Medical consultation yesterday, and already today waiting for callback on lab results plus initial proposal for research study out the door!

[demografx]

It's great that your endocrinologist seems interested in helping.

Many thanks, Counterpoints! Got my fingers and toes crossed.

[demografx]

Re: Counterpoints' POIS questionnaire survey

To all those who have just started reading, the form can be found at:
http://pois.olympe-network.com

Just to clarify for everyone: my questions are in no way intended to discourage anyone from participating in Counterpoints' survey.

My background is in consumer research, so my questions simply reflect my learning the differences between consumer and medical research. They are different.

[underwater]

Hello, I'm new here

I've read over sixty pages of this forum, and am incredibly impressed by the dedication and sincerity of the participants. This is obviously an extremely sensitive and complex topic. I too am a member of this cast of "Les Miserables", having these horrendous and debilitating experiences for at least 20 years, and yet not going insane. I also have had general anxiety disorder for over 30 years and, to top it off, chronic pelvic pain syndrome for the last two years. [I assume they are all connected somehow?] Yet, life goes on. This is the first time I have ever posted on any forum as I don't like groups. However, POIS is too important not to contribute something. The onset of POIS seems to be the catayst that get my whole "being" out of whack, and it takes a while for clear windows to return. Historically its gone from two days to a week. But the POIS I just got out of only lasted 1 day--STRANGE--
I have most symptoms that are common, but I don't get serious brain fog. My rational mind just sits there and laments it has to be captive to this chemical circus. My depression causes the angst more than a specific brain fog. However I do get more tired. The last 18 months seem to be about 50/50, feeling just fine about half the time (avoiding "O" as much as I could), and the other half feeling depressed and anxious with a myriad of other common maladies. Ne is the cause of most of my POIS now. I agree with those here who have concluded that Cortisol, Prolactin, Dopamine, Serotonin, Epinephrine etc. play a big part in our problem, However, I think that neuromuscular conditions must also be considered. I believe there is a dynamic feedback loop that operates between the ejaculation muscles and the lumber region of the spine (and of course the transmissions of impulses to the adrenal glands, hypothalmus and pituitary with accompanying biochemical changes) In this feedback loop that runs through the pelvic floor muscles (which are compromised of nerves, the pundendal nerve being one of them), there are complex patterns of muscular contractions, the Initial Organsmic contraction being the triger of the later rhythmic cascade of contractions. Rhythmic signals are flying all over along with fluids, hormones and neurtransmitters affecting the entire body. I'm certain these signals are different for each person. I've been thinking lately that some people may have a feedback loop that transmsits signals longer than others, that the ability to relax those contractions intiated by the Initial "O" takes much, much longer. We may not sense this, but it may continue to affect our biochemistry by driving up Cortisol for a longer period, as an example. Perhaps the electrochemical triggers just don't shut off soon enough. I don't know what molecules these may be. I'm not a biochemist. My background is Law and Education. The problem  may be compounded by small tears and adhesions in critical muscle groups that prolong this activity. The nerves would be affected also. We must remember that powerful contraction take place in "O" and the related muscles get quite a workout during life. Everybody's physiology is different.
Anyhow, this is where my thinking is right now. I also believe that psychology plays a part, because everybody knows that stress can cause muscle tension and tightening.
With respect to POIS: a little valium helps at bed 1-2 mg.  Long distance swimming helps with good deep breaths ( I load up on endorphins, but it dissipates in 2 hours)
Sometimes at Chriopractor, electro stimulation of sacrum helps. 
Added note: even if I have anxiety and pain in groin area from my other issues, POIS makes the whole thing worse. This makes me feel like **it. I know when POIS ends, even if my GAD remains. I guess I'm lucky that I'm just fine 50% of time. My conditions never affected by career or family life, or at least I kept them hidden enough to get by. I had to and have to try like hell sometimes to overcome in social situations. I'm retired now thank heavens.
BEST WISHES UNDERWATER

[Counterpoints]

Re: Counterpoints' POIS questionnaire survey

To all those who have just started reading, the form can be found at:
http://pois.olympe-network.com

Just to clarify for everyone: my questions are in no way intended to discourage anyone from participating in Counterpoints' survey.

Thanks for your clarification. 
Also: If the Dr. is aware of this forum, (in my opinion) it would help for him to see the questionnaire responses; after all, the questionnaire was partly designed to summarize important details on the forum.

Also, one very important symptom you may have forgotten about.  (I'm not sure if you have this).  But difficulty of expression -- difficulty finding the words to express thoughts.  This is something I've heard almost everyone describe.

[demografx]

If the Dr. is aware of this forum, (in my opinion) it would help for him to see the questionnaire responses; after all, the questionnaire was partly designed to summarize important details on the forum.

Counterpoints, I went with your suggestion and sent both doctors the full set of responses.

[demografx]

Underwater, welcome!

60 pages!!

Off to sleep for now, will read more tomorrow.

Great to have you here.

Two things of interest for you:

A POIS video by our member Girlwind:

A questionnaire, by Counterpoints, for data sharing amongst us and for outside research professionals:
http://pois.olympe-network.com/

[Counterpoints]

If the Dr. is aware of this forum, (in my opinion) it would help for him to see the questionnaire responses; after all, the questionnaire was partly designed to summarize important details on the forum.

Counterpoints, I went with your suggestion and sent both doctors the full set of responses.

Good luck with everything.

[CertainlyPOIS]

underwater
Newbie

Posts: 1


   

MessageID: 209222
Today at 04:20:06 »   

Hello, I'm new here

I've read over sixty pages of this forum, and am incredibly impressed by the dedication and sincerity of the participants. This is obviously an extremely sensitive and complex topic. I too am a member of this cast of "Les Miserables", having these horrendous and debilitating experiences for at least 20 years, and yet not going insane. I also have had general anxiety disorder for over 30 years and, to top it off, chronic pelvic pain syndrome for the 



Hey i have those freakis pois only lasting one day twice.  Once after NE. And other after Orgasm.
I would really love to know why. When it happend to you did you notice any difference that could hav caused it.

[underwater]

CCconfucius--

YES, there appears to be a possible cause:
I had 3 NE's in a two week period (the worst in my life)--
Then, for the first time in my life I had a dry, nocturnal "O"
contraction--
My assumption is that the cascade of muscle contractions were shortened,
thus reducing the time frame that neurotransmitters were firing---
As I mentioned in my previous post, I don't know what "signal molecules" these may be.
After so many years, I keep trying to come up with some theory or another---
However, I do agree that ULTIMATELY Cortisol and other hormones and neurtransmitters cause the lousy feelings. Yet those molecules need to be signaled in order to initiate their interactions, such as the possible Cortisol spike and Dopamine reduction?
Underwater

[Limejuice]

Demo: great work and great strides with the endo.  The letter looks fantastic.

Great things come from great work and passion.

[demografx]

When we hit PAGE 100, to
celebrate.................I propose
that we get Counterpoints to fly us
all to this fine POIS Retreat!!!

[demografx]

Demo: great work and great strides with the endo.  The letter looks fantastic.

Great things come from great work and passion.

Limejuice, thank you!!

[demografx]

...one very important symptom you may have forgotten about.  (I'm not sure if you have this).  But difficulty of expression -- difficulty finding the words to express thoughts.  This is something I've heard almost everyone describe.

Thanks for that, CP. Nice exotic symptom to have included! Unfortunately, my letter said, "As an example, below are my symptoms following orgasm,
which last 3-4 days:"

When writing to "Dr. Y", (the Grant expert, whom I have yet to meet) I chose to make it personal rather than statistical, so it would have been inappropriate to generalize.

Besides, "difficulty of expression"..hmm..I'm often tongue-tied, POIS or no []