Things we would like to be able to tell Dr. Komisaruk

[demografx]

I'm 3,000+ miles away from Newark, but I'm considering volunteering myself.

Even with all the testosterone I'm taking (successfully), if that will help another POISer like me (some of us have different reactions, as Defsync points out), it might help!

Demo, if I go, you go. Team effort brohem. We need your brains, and my loudmouthed capacity for asking tough questions.

Looks like I'm gonna listen up to Defsync after all!!!

 

[Vandemolen]

Maybe for POIS-patients with PE? Or maybe put semen on an arm? I don't know, I am not a doctor.

Desens is ok. Still 70% less symptoms. But I have a big UTI problem. Maybe the desens made it worse.

Hi Vandemolen,

I'm not sure what the point of doing an fMRFI while sleeping would be when the trigger is orgasm.
How's the desensitisation going? I see the last update on your footer is April 2013.
FloppyB

[demografx]

FROM STEF RE TRAVEL TO NEWARK!

Hi All,

The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult. 

It takes ~ three weeks for them to make arrangements, FYI.

They've been around for years and are a reliable, trustworthy non-profit organization --

National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767

I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.

Stef

[Daveman]

Maybe for POIS-patients with PE? Or maybe put semen on an arm? I don't know, I am not a doctor.

Desens is ok. Still 70% less symptoms. But I have a big UTI problem. Maybe the desens made it worse.

Hi Vandemolen,

I'm not sure what the point of doing an fMRFI while sleeping would be when the trigger is orgasm.
How's the desensitisation going? I see the last update on your footer is April 2013.
FloppyB

While sleeping?? Don't think so.

[demografx]

FROM STEF RE TRAVEL TO NEWARK!

Hi All,

The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult. 

It takes ~ three weeks for them to make arrangements, FYI.

They've been around for years and are a reliable, trustworthy non-profit organization --

National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767

I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.

Stef

[Outsider]

Hi guys,
i m new in tjis forum.
I m 36 years old
and have the pois since i have 14 years.


About the mri and the vagus nerve,
that interesting
I have typical way to cure my pois
for many years.
In fact a self massage on the head
for begining the side and i felt better

but strangly after Orgasm just massage
a little bit a few second behind my neck

or just put my hand on the neck, or behind the neck and
the symptoms were gone !!!!?
It worked well,...

This is perhaps a link with the vagus nerve


I already took a lot of psychotrop, especialy neuroleptics
and now my pois is badly strong ...

[Colm]

POIS for me has caused memory and cognitive dysfunction. Best way to describe it is this:

say a problem is before me. normally i would take into account everything i know about the problem to solve it. Under POIS, my ability at memory recall and remembrance is severely affected, to where I might only remember half of what i should know to solve the problem. And also believe that that half is ALL I know (no acknowledgement of missing memory).

another example ive had would be driving. I see the light is red. I know that it means something specific, but I do not remember that it means stop. So, in an open intersection I would drive right through not realizing until someone started honking that red means stop.

i might study for an exam for weeks, have a nocturnal emission the night before, then fail the exam the next day unable to recall the majority of the memorization over the last couple weeks. this would from the beginning of puberty around 11 until 18 when I graduated from high school.

I may have worked at a job for years, know procedures to follow like the "back of my hand", yet post orgasm the following days, POIS has caused me to forget procedures that I have done EVERY DAY since starting that job. And have fun trying to explain to a manager why you forgot procedures you know you know and have never failed to follow EXCEPT when under POIS symptoms.

in the marine corps infantry I might train for a live fire exercise for a couple days. have a nocturnal emission the night before the live fire exercise. during said exercise I am to control half a squad of marines using hand signals and judging visual distance to ensure no marine is too far ahead or behind (to avoid friendly fire). instead i forget hand signals and my ability to judge distance is greatly skewed, putting marines in the line of fire.

cognitive reasoning seems to be affected, for the main reason that memory recall is greatly stunted, IN ADDITION to the ability to REALIZE that memory is missing. This leads one to respond to situations or communication irrationally because in one's mind "i think i know everything there is to know about what im responding too" when in reality under POIS "im missing many pieces of the information that I know but am unable to recall and unable to remember that  I am missing"

I believe it might be of interest in looking at the histamine that is released from the mast cells during orgasm. Note below in this dissertation the affect of Niacin on histamine, Niacin being one of "helpful" therapies to POISers. The hippocamus has histamine receptors. I wonder if the histamine released during orgasm can affect teh hippocampus ability to modulate memory functions.

So to this I would suggest, during fMRIs, that if possible some focus be concentrated on the hippocampal region of the brain.

"Research has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia ( histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histimine."

I can see looking at the Vagus nerve since it would explain more the additional physical symptoms of POIS. I personally have had no physical symptoms, except perhaps a greater sensitivity to pain, tho I think that might be from the depletion of dopamine during orgasm.

I notice the longer I go without an O the harder it becomes to sleep, to the point of near insomnia for a day. Maybe in POISers we have brains that cannot modulate dopmine and pre-O our brains get too much dopamine because the brain has a hard time regulating it down, and post Orgasm levels stay low for too long because the brain has a hard time regulating it up.

Another theory is the release of excessive glutamate during Orgasm, and a brain unable to regulate that chemical down properly. 3 glutamate receptors have been shown to affect memory transmission and retention. A drug that does seem to significantly affect the memory dysfunction is Lyrica (pregabalin). This drug decreases the release of glutamate as one of its functions. Perhaps in a POISed brain this helps regulate down the glutamate that may be there in too great an amount, helping to relieve some of the memory dysfunction.

In short: I believe it may be worth looking at the levels of histamine and glutamate released during orgasm, and the ability of a POISers brain to regulate those chemicals back to normal levels, in case the hippocampus and associated memory structures are affected by high levels of these bio chemicals. I also believe that it may be worth looking at the hippocampus during fMRI studies (fMRI during orgasm, at 3 hours, 6 hours, 12 hours, and every other 12 hours for 5 days) to see if the hippocampus functioning is affected during POIS.

One major point I would like to note: Men seem to be more affected with POIS than women. Note, men are prone to nocturnal emissisions (unscheduled orgasms) on a regular basis, where women are not. Also, POIS may not be an all or nothing illness, it may be a % of the brain inability to regulate post Orgasm. To this I say that there may be more people out there with some level of POIS but at lower levels. Some of us even after years of POIS had no idea what POIS was doing to us, so for someone who may have much lesser symptoms, they certainly may not even realize they are being affected so. I also propose that considering the vast majority of homeless in america are men, I wonder if a percentage of these homeless men have struggled because they have POIS (unrealizing their unscheduled nocturnal emissions are causing them cognitive dysfunction).

Make no mistake, a job that requires a fast response time and huge amounts of memorization can be gravely affected by the memory dysfunction from POIS. It is severe enough to take the lead from several mental disorders that citizens of the united states currently get disability SSI from. To me that merits that this condition should absolutely be looked into far more than it is.


~Defsync

Maybe related to this partial text from post above from Defsync....

Since taking Niacin, I am experiencing the return of Nocturnal Emissions ! Maybe Niacin opens up something at a subconscious level of the brain / mind.

I had nearly trained my subconscious for this NOT to happen for the last few years, as it allows me no control over days I have to be at my best possible energy for work.  Age was making it less of an issue, but back on the POIS agenda for me now. The pros and cons of treatments I guess, and worth exploring areas mentioned by Defsync. Anyone else had this experience?

This is maybe something of interest to anyone researching Niacin and whether it opens us up more?

[LAPOISSE]

Any news?

I understand we have had maybe 10 words in 2 month from Dr K team...Did I miss something ?

[demografx]

RUTGERS'  STATUS


Demo,

It takes about a month to get IRB approval, if all goes well.

Barry


Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102

phone (office): 973 353 3941
phone (mobile): 973 462 0178

On Fri, February 28, 2014 2:49 pm, Demo wrote:

Thanks, Barry,

I thought the delay was caused by getting the official NORD letter which
we pushed for. We thought it was a month from your receipt. Am I just
nitpicking "days"?

Best,
Demo

ps - is everything on hold for Rutgers' formal approval?

Anything we can do to help initiate this long-awaited study would be
appreciated.


On Feb 28, 2014, at 11:06 AM, Barry Komisaruk <brk@psychology.rutgers.edu>
wrote:

Dear Demo,

Hopefully in about a month.

Barry

Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102

phone:  973-462-0178 (mobile)
      973-353-3941(work)
fax:    973-353-1171

On 2/27/2014 5:09 PM, Demo wrote:

Hi Barry,

Just curious if there is an ETA for Rutgers' formal approval of fMRI
for POISers?

Best regards,

Demo

[vetrofragile79]

I read with great pleasure your sotier of POIS but I would say (I do not want to sound rude) if you could not go off-topic comments and feedback.
just the answer "Things we would like to be Able to tell Dr. Komisaruk and Lakshmin."

It would all be easier to read for the doctor and us, what do you think?
 

[Jimmy]

Hi all,

I wish we all can find a cure soon.

I want to highlight that POIS does not hit instantly after orgasm instead it gradually increase in effect. For me, I don't feel any symptoms in the first 4 hrs after orgasm, pois starts after 4 hrs and it reaches the maximum in the second day, and gradually decreases then.

I think this may guide the researchers to take measurements or fmri scans in different time periods after orgasm and not directly at orgasm. This may help to figure out the hormonal, blood or even nero changes that lead to the miserable symptoms of POIS.

Thanks,

[demografx]

I read with great pleasure your sotier of POIS but I would say (I do not want to sound rude) if you could not go off-topic comments and feedback.
just the answer "Things we would like to be Able to tell Dr. Komisaruk and Lakshmin."

It would all be easier to read for the doctor and us, what do you think?
 

Both Dr K and Dr Lakshmin prefer reading their own mail directly:
http://poiscenter.com/forums/index.php?topic=1220.msg11541#msg11541

[fidalgo]

I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).

I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...

Sorry for my poor english...

[Nightingale]

I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).

I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...

Sorry for my poor english...

Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!

I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.

Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?

[fidalgo]

I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).

I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...

Sorry for my poor english...

Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!

I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.

Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?

I'm not sure if the second ejaculation is more pleasureful with me, but maybe it is...

[Going less Crazy]

I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).

I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...

Sorry for my poor english...

Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!

I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.

Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?

I believe are ejaculation is so strong because we wait so long in between orgasms.  If I wait a day after the last "o" than had an orgasm, the ejaculate won't be as forceful.  But if I wait 2 weeks from my last ejaculation my ejaculate will be extra forceful.

[fidalgo]

I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).

I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...

Sorry for my poor english...

Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!

I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.

Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?

I believe are ejaculation is so strong because we wait so long in between orgasms.  If I wait a day after the last "o" than had an orgasm, the ejaculate won't be as forceful.  But if I wait 2 weeks from my last ejaculation my ejaculate will be extra forceful.

I disagree with you. In my case, at least, doesn't have relation with the time I wait between the orgasms. I didn't wait too long because I didn't see a lor of difference, but my ejaculation is to strong. If I wait a long time, the volume of sperm increase, but I don't see difference in the distance of ejaculation... And, despite with the abstinence, my ejaculation is a lot abnormal... A normal person don't have that...

[Jmari]

What is the best way to seek medical intervention or assistance? I have seen my general doctor before and he responded with skepticism and did not know what else to think. He said that he has never had someone complain of these symptoms before and that it may be "psychosomatic." I consulted an allergist and he said this whole concept was absurd. Luckily he did not charge me as he thought I was being misled. I then saw a urologist believing that this was somehow related to some dysfunction of my vas deferens or prostate. He checked things out and said everything was normal. When I told him about the symptoms hew as skeptical and when I told him about "POIS" he began to smirk and say that doesn't exist. I saw another urologist who said that I should speak to a psychologist. I tried to make an appointment with a neurologist nearby and found out that I would have to go back to my general doctor, who hasn't got back to me. Where should I go from here?

[Colm]

Hi Jmari,

I would like to just echo all that Prancer says here as I share the frustration.

Within the POIS community share forums, there are some potential symptom reduction things to try. Of course, everyone is different so it takes patience and some research within the posts, to see what will help you.

We have to remain hopeful that some day soon, a guy can go to his GP and not be so dismissed or that hopefully specialist treatment will emerge out of the focus that this condition will - with our support - attract in the immediate future.

GP's don't know everything and it would appear in the modern health system, much  education for GP's may take precedence, when there is a drug to be prescribed.  It isn't the GP's fault of course.

[Jmari]

Thanks, keeping the faith!!