Free Flow Discussion about POIS

[demografx]

German edition of one of Dr. K's books.

[demografx]

edit - I changed the titles of the 2 Rutgers women on the POIS Study Team (see  my previous photo-based posts.  This comes from NORD.

The complete list of members for the POIS investigative team is as follows:

-Barry R. Komisaruk, Ph.D.,                    Principal Investigator

-Pooja Lakshmin, M.D.,                           Co-investigator

-Dr. Eleni Frangos, Ph.D                         Project Collaborator

[demografx]

Available at Amazon. Focus: female orgasm

BOOK REVIEW
Sex fascinates us all and now it seems that everyone has a view. The media abounds with advice about sex from doctors, psychologists and therapists who jostle for recognition. But despite the surfeit of advice there is little science. The problems of taboo and censorship have been replaced by one of validity. This book provides information from the best available evidence. Talk of sex being as strenuous as walking up stairs or walking a mile does not pack the same punch as how many patients have a heart attack ‘in the saddle’. Even in the priapic, post-Viagra age the figure seems low: 1.5% of 1700 cited in the chapter titled ‘are orgasms good for your health’.
The authors are a professor of psychology, of nursing, and the head of a laboratory. They have proceeded from definition to physiology and pathophysiology, and the effect of prescribed and elicit drugs. They review the research into the endocrinology and the neurology of sex in both the intact and damaged brain. The information from imaging is assessed. All the while the authors have not strayed beyond what is in the literature.
The instruction does not crowd out the entertainment. They have an eye for the intimate when a researcher’s erection, induced by a self-administered alpha blockade, ‘is entirely undiminished by concentration on exacting intellectual tasks... I took an urgent and worrying telephone call without losing the erection’. One presumes the caller was unaware.
The authors should be congratulated on taking the trouble to produce a readable comprehensive account of the literature on orgasm. All psychosexual clinics will need to have a copy as well as anyone who advises others about psychosexual problems.
© 2007 Royal College of Psychiatrists
The British Journal of Psychiatry (2007) 191: 369 doi: 10.1192/bjp.

[demografx]

MORE REVIEWS
http://www.amazon.com/gp/aw/d/080188490X/ref=mw_dp_mdsc/186-5422947-8278540?dsc=1

[b_jim]

I must admit I don't know what to think about this attack strategy. It is really surprising.
The draw you posted with multiple connections (throat, heart, intestine...) is comforting and if they chose this point of attack they probably have good reasons. And I CLEARLY have muscles fasciculation after ejaculation, that's a good point. Buzz ear too (easy connection with this theory).

But some connections are very strange. The prevalence of Pois is >99% for men. What about testosterone ?
What about delays ? (some minutes after ejaculation to 2,3,4, 5  .... 10 days.)
What about cold feeling after ejaculation ? What about sugar/insuline sensitivity ?
What about dopamine (and dopamine-family neurotrasmitters) in sperm ?
And mainly what about concentration/derealisation problem, which is the main symptom of lot of Poisers ?
To be clear, up to know I saw the dystonic factor as a consequence and not as a cause.

I'm doubtful, let's see the complete analysis

Anyway, it's really time to follow John's diet (fava beans = L-Dopa)

Some people report a half cup (4 ounces, 112 grams) of fava a day, or even every other day, gives good results.

[Daveman]

I must admit I don't know what to think about this attack strategy. It is really surprising.
The draw you posted with multiple connections (throat, heart, intestine...) is comforting and if they chose this point of attack they probably have good reasons. And I CLEARLY have muscles fasciculation after ejaculation, that's a good point. Buzz ear too (easy connection with this theory).

But some connections are very strange. The prevalence of Pois is >99% for men. What about testosterone ?
What about delays ? (some minutes after ejaculation to 2,3,4, 5  .... 10 days.)
What about cold feeling after ejaculation ? What about sugar/insuline sensitivity ?
What about dopamine (and dopamine-family neurotrasmitters) in sperm ?
And mainly what about concentration/derealisation problem, which is the main symptom of lot of Poisers ?
To be clear, up to know I saw the dystonic factor as a consequence and not as a cause.

I'm doubtful, let's see the complete analysis

Anyway, it's really time to follow John's diet (fava beans = L-Dopa)

Some people report a half cup (4 ounces, 112 grams) of fava a day, or even every other day, gives good results.

I feel much like you b_jim, for me it is almost certain that it is a consequence rather than a cause.

My sense, and we really won't know until we hear from them directly, is that their study goes much beyond the pure dystonia factor.
fMRIs can produce incredible information. It is not necessary to use an fMRI to show vagal dystonia, but the fMRI can bring out deep and far
reaching related information.

At the very least, the study will produce unequivocal information as to cause and effect, in a controlled study (people with and without POIS), which would lead to unfolding the root cause. Nobody will be able to say that POIS is bunk!

My feeling is that brain effects during the study and throughout the differing phases will go a long way to pointing out the likely cause.

I had a short conversation with Dr. Pooja Lakshmin, where she mentioned that they will be posting shortly to the forum, with information about the program and about recruitment of test subjects. From the little that she said, I am confident that they are very interested in knowing all of the details of POIS, symptoms, onset, progression, remedies, histories, everything. So I am much more confident than I was that this program will produce results.

[b_jim]

There are some forms of dystonia like Dopamine-responsive dystonia (or Segawa's disease) which seems to have good improvement with l-dopa.

[Daveman]

There are some forms of dystonia like Dopamine-responsive dystonia (or Segawa's disease) which seems to have good improvement with l-dopa.

We have had a response from the research team, and they hope to write up a general introduction and guide for those who will be interested in being part of the testing. This should happen tomorrow or in the next couple of days.

I expressed concerns for the cognitive aspects, and they indicated that they will incorporate this in their testing.

A note to everyone, they will be reading the thread Things we would like to be able to tell Dr. Komisaruk , so post over there to express your concerns and desires. This is not to say that they can do everything, but it will give a chance to uncover things that may not be presently known.

As in any Dr. patient relationship is is important to know what the patient feels.

 

[icefloe]

Hi dave and demografx, thanks for good news.
I am very keen to help research with my own excperence with POIS. I have many MRI- files with POIS time and I can upload them. Please ask, maybe we can send all information straight to the POIS medical team. English is not my native language, but I am ready to write my personal story, living with 30 years with POIS.

[LAPOISSE]

It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.

As far as I know we can explain very well mechanism of all neurovegetative related diseases  but we dont know how to cure them ; it's more like a symptoms than a disease. All we do is interfering in the mechanism to slow down symptoms ; My doc told me a while ago that I had neurovegetative dystonia and the cure is......benzodiazepine....great...I guess L dopa is neither the kind of meds we want to use long term.

As the described dystonia(POIS) is clearly not motor related(who has motor problem here ?), I guess Dr Komisaruk's is  talking about some form of neurovegetative dystonia :

http://www.ncbi.nlm.nih.gov/pubmed/9394265

The question is what if  the answer to the question : "Is POIS a Case of Vagal Dystonia?" is yes ?

[Daveman]

It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.

As far as I know we can explain very well mechanism of all neurovegetative related diseases  but we dont know how to cure them ; it's more like a symptoms than a disease. All we do is interfering in the mechanism to slow down symptoms ; My doc told me a while ago that I had neurovegetative dystonia and the cure is......benzodiazepine....great...I guess L dopa is neither the kind of meds we want to use long term.

As the described dystonia(POIS) is clearly not motor related(who has motor problem here ?), I guess Dr Komisaruk's is  talking about some form of neurovegetative dystonia :

http://www.ncbi.nlm.nih.gov/pubmed/9394265

The question is what if  the answer to the question : "Is POIS a Case of Vagal Dystonia?" is yes ?

Do you mean what if the answer to the question is "no"?

Anyways, also a concern of mine, but I have been greatly relieved after speaking with them recently. They are very determined to establish a good POIS profile first, and are also interested in taking the many and serious cognitive aspects into account as well.

They should be contacting the forum quite shortly. If not tomorrow, at least before the end of the week... but sooner than later.

Please voice these concerns on the thread to Dr. Komisaruk. The best way of being heard.

[Colm]

[Daveman] They are very determined to establish a good POIS profile first, and are also interested in taking the many and serious cognitive aspects into account as well.

They should be contacting the forum quite shortly. If not tomorrow, at least before the end of the week... but sooner than later.
[/quote]

All eagerly awaiting initial contacts from Dr. Komisaruk's team ?

[demografx]

Daveman and I had a Skype conference today with Barry and Pooja.

Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed

There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.

[Bulbo]

Hello defysync
 You have done a great job by volunteering . I thank you

[lauracostis]

Daveman and I had a Skype conference today with Barry and Pooja.

Went well, I thought. It was an introduction to understanding POIS and how best to study it with Forum Volunteers (Defsync already has his bags packed

There will be a 1-2 month delay to get Rutgers' official approval to do fMRI's on POISers.

I think FMRI is a good first step, if we can prove that there are physiological changes in the brain of poisers, than trying to find the cause can be the next step.

[Chris]

Has anybody here done fMRI in the past ? What was his results ? With so intense cognitive symptoms wasnt it obvious to have an fMRI scan ?
Unless someone did and the results showed no significant changes compared to normals..

[LAPOISSE]

I did 2 regular MRI showing nothing particular. fMRI detect correlation between brain activity and changes in blood flow ; Definitely interesting to explore that as orgasm(and stress/anxiety) are connected to blood flow in particular through mediation of parasypathetique nervous system and other part of CNS.

I guess that researcher want to prove that there is an abnormally high nervous response of the CNS to orgasm(and probably stress).


 

It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.

As far as I know we can explain very well mechanism of all neurovegetative related diseases  but we dont know how to cure them ; it's more like a symptoms than a disease. All we do is interfering in the mechanism to slow down symptoms ; My doc told me a while ago that I had neurovegetative dystonia and the cure is......benzodiazepine....great...I guess L dopa is neither the kind of meds we want to use long term.

As the described dystonia(POIS) is clearly not motor related(who has motor problem here ?), I guess Dr Komisaruk's is  talking about some form of neurovegetative dystonia :

http://www.ncbi.nlm.nih.gov/pubmed/9394265

The question is what if  the answer to the question : "Is POIS a Case of Vagal Dystonia?" is yes ?

 


Actually, I meant "yes" ;

From my limited medical knowledges, my understanding is there is no cure at all for this kind of disease and it's actually considered as secondary to an underlining cause(auto immune disease, lyme, parkinson, genetic related disease, generalized anxiety, etc, etc) ; I believe answering yes to the research interrogation would be like knowing that POIS is a case of migraine or a case of CFS.

Hope I'm wrong

[demografx]

LAPOISSE, your post is perfect for posting at the thread Daveman created for Dr Komisaruk.

[Chris]

Yes, at least there will be evidence that there really is a disorder and change in the brain activity.
But couldnt these changes be just symptoms of the underlying cause, our real problem ?
FOR ME, stess/anxiety definetely affects POIS, meaning that its like a sub-cause of orgasm that can cause symptoms or make your current symptoms worse.However, this increase intensity of symptoms is only temporary and after some time you return to the state before the stress hit.

[Nightingale]

It's interesting how the title of the study already give some kind of conclusion ; I didn't know researcher already had a theory to verify even before starting the research ; In my opinion there is pro and cons ; pro is that it's more go forward and I guess with limited fund they need to go straight to the point but if the theory is untrue we go back to 0. For exemple if Waldinger is right(remember, our 2011 POIS hero) and POIS is auto immune, not sure we see something in the MRI.

This is the scientific method:



When you refer to "some kind of conclusion," I think you are confusing this with their hypothesis. There is no title of the study, I don't see why they would need one?? There will be a title to their paper, that they publish once they, test, experiment, analyze then communicate the results. And, they have the freedom to change their hypothesis during testing! If the hypothesis is not being backed up, they can definitely change approaches in this study!

I don't see how fMRI has much of any chance of gettting us 0 progress... this is one of the most knowledgeable researchers in the field.  We might know a lot ourselves, but we havn't been able to fix each other. I think an outside, expert evaluation is needed, and that's exactly what we are getting.

Waldinger may be a hero is some respects, but who is to say this is autoimmune? It is still inconclusive. You are right in suspecting that Komisurak is looking to find out if there is pathology in our nervous system, but I am puzzled why there is so much worry that looking at fMRI will be a waste. The brain is the one best place to look to find out what is going on throughout the body. The brain responds and depends on feedback from the nerves.

There are many possibilities here, and I think the waste would be to rush. We are all wanting this fixed. Now. Right now. But the research that we have "bought" with all our money doesn't care about "right now."  It is careful, methodical, and evidence based. We have very little evidence that any of our own pet theories work, but Dr Komisurak has LOTS of evidence to back up his hypothesis. Now, he should know we have a lot of knowledge ourselves, and should listen carefully to us. But we should listen carefully to him. And be patient! We already have a doctor doing research on the autoimmune side of things with Waldinger, and he has not delivered. Let him keep trying. But we have a world class neurologist now, and that gives us a new weapon against POIS.

The brain is the most complicated thing in the known universe, and now we have an expert who studies it. I think we should give him our attention! He may not find "the cure", but I have a STRONG suspicion he will find something important. And that is what we should expect. If each of us wants to find the cure our own way, we should raise our own money and find our own NORD, so we can do exactly what we want. But I'm glad it didn't happen this way! NORD spent most of a YEAR deciding who would best help us, looking at a variety of specialist and scientists. I think they have set us up for success.

It's too early to start criticizing... please, lets give the Dr. a chance, and PLEASE give him a warm welcome when he starts posting.  Last thing I'd want to see is a bunch of critics critiquing his hypothesis before he even gets to talk to us directly... I hope I'm saying the obvious here!