[tarkington]

Well if it is somehow related to elevated (or even decreased) prolactin or oxytocin, then what would cause that elevation (or decrease) and how do we fix that?  Maybe the elevation or decrease is related to abundance or scarcity of other chemicals that I don't know about.  I am no professional so I am only speculating.

[demografx]

UPDATE FROM DR. MARCEL WALDINGER


----- Original Message -----


From:      Dr. Marcel Waldinger
To:        [demografx]
Sent:      Wednesday, October 01, 2008 1:55 AM
Subject:   Re: 3 POIS Forum resources [our 3 websites]


Dear [demografx],

First of all my apologies for the delayed reply. I am a very busy person and cannot answer immediately to the many e-mails I daily receive.

I also do not have the solution of POIS.

Today I received an e-mail of an unknown person who wrote me that men are desperate and that one man even removed his testicles. I do understand that POIS is a very serious problem.

It seems to me that your correspondence to me and my delayed reply has been discussed with other men.

I would like you to inform these other men that I try to find out what is causing POIS, but that this research is very very difficult to perform, also because of a total lack of financial support.

I also would like you to inform men that I will do my best to in the next weeks to spend more time to POIS. You should realize that I am very busy with my regular work and other research activities, which I cannot stop in just a few days in order to spend more time to the research of POIS.

Briefly, I do not have so much time to focus daily on our research of POIS and certainly not to focus daily on Internet discussion groups. I just do not have enough time for that.

But I will to my best, starting next week, to visit the internet sites you have mentioned, and try to find out what I can do for the many men you have mentioned.

I am pleased that you have contacted me and I do think that this will stimulate the research of POIS.

We have made progress with our own research but not enough to state that we have found the cause of POIS.

I do have some ideas about what all your men can contribute to the research of POIS. I will contact you later this week or around the weekend to discuss this with you.

But please, stop to think that I am the solution of POIS. I can only contribute, in all modesty, to the research of POIS.

With best regards,

Dr. M.D. Waldinger


===============================================================


----- Original Message -----


From:      [demografx]
To:        Dr. Marcel Waldinger
Sent:      Wednesday, October 01, 2008 11:05 AM
Subject:   Re: 3 POIS Forum resources


Dear Dr. Waldinger,


On behalf of the entire POIS Forum, I thank you very much for all your thoughtful consideration and action!

We look forward to working with you.


Best regards,

[demografx]


[3 websites I gave Dr. Waldinger to which he refers in his email  - demografx]

POIS Forum website
http://www.thenakedscientists.com/forum/index.php?topic=6576.new#new

POIS video

POIS survey form
http://pois.olympe-network.com

=================================================================

[I have also given Dr. Waldinger my home telephone and cellphone numbers]

[demografx]

Can we make it easier for Dr. Waldinger?

B_Jim? Counterpoints? Anyone? As we can see, his time is very limited. B_Jim has created a summary, would that be a useful start? Certainly let's not overload him with information!

[demografx]

I found this on wikipedia.org  - interesting: if oxytocin and prolactin are responsible for the refractory period maybe these chemicals are related to our symptoms....

tarkington, I found your discussion of oxytocin and prolactin very interesting. I wonder if a PET scan during the refractory period could be revealing? Too bad it's so expensive!

[hurray]

Thanks for the update Demografx! I think Dr Waldinger's reaction is actually enormously encouraging. He obviously has long-standing professional committments to his patients and his current research, but he is still willing to make time to look further into POIS. He even has ideas about how the members of this forum can help him with POIS research - very interesting!

[demografx]

yes, hurray, I thought it was very encouraging. Thanks!

And your help in locating Dr. Schweitzer was great; you're a better Googler than me!

[Counterpoints]

If anyone is interested, I know an MD PhD researcher in California who has seen POIS patients, recognizes it as a legitimate condition, and would be willing to see new patients. He is aware of all the present research, and this forum.  He has read Dr. Waldinger's paper.  If you are in or near San Fransisco, and would like to find out more about this person, send me a private message and I will send you his CV.

[Counterpoints]

Interesting thoughts, B_Jim.

I have been trying Bisoprolol 5 mg/day for slightly over a month now.  I am noticing definite improvement.  Recovery time has gone from 12-40 hrs to
4-5 hrs.  This happened gradually -- I needed to take the medication for at least three weeks to notice much difference. (Assuming the difference has anything to do with Bisoprolol! This could be coincidental).

Also note, I tried Zoloft, starting at the beginning of August, and ending mid September.  It slightly decreased sexual urges, which was helpful, but I do not sense it had a profound effect on POIS. 

[Counterpoints]

Remember I was asking about motor control?  For me, motor control isn't noticeably affected during POIS, and it doesn't seem to affect many of those who responded to my question.  But look at this (see bolded text):
From: https://www.neurorelief.com/index.php?option=com_content&task=view&id=149&Itemid=48
"Dopamine is an excitatory and inhibitory neurotransmitter, depending on the dopaminergic receptor it binds to. It is derived from the amino acid tyrosine. Dopamine is the precursor to norepinephrine and epinephrine, which are all catecholamines. The function of dopamine is diverse but plays a large role in the pleasure/reward pathway (addiction and thrills), memory, and motor control. Dopamine, like norepinephrine and epinephrine, is stored in vesicles in the axon terminal. Dopamine plays a significant role in the cardiovascular, renal, hormonal, and central nervous systems. The dopaminergic neurons have dendrites that extend into various regions of the brain, controlling different functions through the stimulation of adrenergic and dopaminergic receptors (D1 –D5). Common symptoms with low dopamine levels are loss of motor control, addictions, cravings, compulsions, and loss of satisfaction. When dopamine levels are elevated symptoms may manifest in the form of anxiety or hyperactivity. Some therapies utilize L-DOPA for parkinsonian symptoms which can also cause elevations in dopamine."

This seems to cast doubt on the dopamine hypothesis.  Though I do certainly experience "(unexplainable) cravings for orgasm, compulsions, and loss of satisfaction" while feeling symptomatic.

[hurray]

Thanks Demografx, your initiative in contacting Dr Schweitzer and Dr Waldinger was the important bit, was glad to be able to help a little!

Interesting view Counterpoints. I have taken selegiline for a long time, it is a dopamine reuptake inhibitor. In laymans terms, it means that your brain has access to lots more dopamine than usual. I have been taking it to avoid alzheimers disease, which sadly runs in my family. I should point out that I had been suffering from POIS for many years before I started taking selegiline.

In theory, all this extra dopamine should help ward off POIS. In practice, it does nothing except make me feel somewhat jittery. When I take it after the POIS has faded, its effects work as they are supposed to (seeing colors more vividly, increased sense of vitality). I have also tried L-Tyrosine supplements (the precursor to dopamine, not to be taken at the same time as selegiline!), with no results during POIS, but a significant effect outside that period.

It feels like I'm trying to penetrate some sort of dense cloud in my mind when I drink coffee or do other things to get rid of POIS, but nothing seems to shift it. If we could somehow find out what was causing the brain fog, we would be so much closer to finding an effective treatment ...

[hurray]

Good news regarding your reaction to Bisoprolol Counterpoints! If it's not too personal to ask, are you taking this drug to help with high blood pressure?

I have high blood pressure myself.

Could there be a link between high blood pressure and POIS?

[longwalkhome]

This may not have too much to do with finding a permanent solution, but how does everyone on here deal with POIS? Without a doubt it's a very frustrating experience for all of us, but what choices do you make in dealing with it, and how do you live with them? As for me, I've been trying to cut down on all kinds of sexual activity, but it's a very hard thing to do. I'm still rather young, and seeing all prospects of any healthy and regular kind of sexuality wither away at this point gets me down very often. Also, I can always only keep myself from being sexually active for so long before giving in to my bodily needs. How does everyone stop themselves from doing it? How's everyone holding up?

[Counterpoints]

Good news regarding your reaction to Bisoprolol Counterpoints! If it's not too personal to ask, are you taking this drug to help with high blood pressure?

I have high blood pressure myself.

Could there be a link between high blood pressure and POIS?

I'm taking it primarily to see how it affects my POIS symptoms.  Before the medication, my blood pressure was fairly good (~120/70).  But sometimes it would go up really high, for an evening (~165/110).  I am not confident, yet, that bisoprolol is helping me. The intensity and duration of my symptoms does vary over a period of months.

There may be a link with blood pressure, but it isn't obvious to me yet. I get symptoms after overheating my head in a hot shower -- they're not exactly the same, but they include expressive dysphasia, etc.  This could have something to do with vasodilation, or a lowered? blood pressure.  ACE inhibitors are now more recommended than beta blockers for blood pressure issues.  It would be very interesting to see the effect of an ACE inhibitor on pois symptoms. 

[demografx]

Dr. Marcel Waldinger: received his acknowledgement today that he received and appreciates my private phone numbers and that he wants to speak soon. More encouragement!

Counterpoints, great going with your San Francisco MD! Do you think he would be amenable to telephone or email consultations if someone is too far to visit?

I assume he would charge a fee in either case? Maybe those with insurance plans will be covered to some extent.

It would be nice if there were a medical code # for POIS, so that insurance companies don't raise their eyebrows.

[demografx]

This may not have too much to do with finding a permanent solution, but how does everyone on here deal with POIS? Without a doubt it's a very frustrating experience for all of us, but what choices do you make in dealing with it, and how do you live with them? As for me, I've been trying to cut down on all kinds of sexual activity, but it's a very hard thing to do. I'm still rather young, and seeing all prospects of any healthy and regular kind of sexuality wither away at this point gets me down very often. Also, I can always only keep myself from being sexually active for so long before giving in to my bodily needs. How does everyone stop themselves from doing it? How's everyone holding up?

longwalkhome, I think you're doing the right things. There is no magic answer. Some treatments we are testing seem to have results, but we're still testing. Stopping or slowing down the sex drive at your age is most difficult. The main thing is to not give up, we are making a lot of progress. Please re-read some of the posts since last year and you will find some answers and progress!

Did you see "girlwind"'s POIS video?

[demografx]

Any news on the Garlic Protocol?

[hurray]

Counterpoints, it will be very interesting to see how your treatment develops. It is too optimistic to hope that a drug will ever be developed that specifically deals with POIS, but it may well be that one of the drugs that already exists could be a safe and effective treatment for POIS.

Hopefully, without endangering ourselves, and with the guidance of a qualified health professional, we can slowly begin to pin down which drugs are most effective at dealing with POIS.
Of course, if we fully understood the mechanism behind POIS, this process of discovery would be very rapidly accelerated!

[John21 (OP)]

No news from me Demo, I'm avoiding testing things out...NEs have been infrequent. I'll keep ya'll informed if I learn anything. I'm too busy watching our financial system fall apart these days to worry about POIS.  [V]

[demografx]

No news from me Demo, I'm avoiding testing things out...NEs have been infrequent. I'll keep ya'll informed if I learn anything. I'm too busy watching our financial system fall apart these days to worry about POIS.  [V]

John, don't watch it. It's too depressing. I'd rather hear about garlic and hormones, and neurotransmitters []

[demografx]

At the moment, i'm looking for another cause of possible adrenal dysfunction and I will have the results in 1 or 2 months.

B_Jim, that sounds very interesting. I look forward to your findings!