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

[Ccconfucius]

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.

The best thing is to try things on here that have helped others and reduce orgasm frequency while we wait for research.  Most docotors only work with known disease they dont attempt mystery cases. I will say dont waste your time and money unless you have something you want to test.
Lately when i go to the doctor i already know what i want to test for or try. I just back myself up with knowledge from research, mention all the doctors that have written about pois and the current research on pois. I also tell them how long have been doing this and how long the forums have been active. By time i do all this they cant say am crazy, they just decide whether to do the test or not.

[poisioq]

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...

To me it works in the opposite way: the stronger is the eyaculation and the more pleasurable is the orgasm, the better I feel afterwards.

[Daveman]

Mee too

[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...

To me it works in the opposite way: the stronger is the eyaculation and the more pleasurable is the orgasm, the better I feel afterwards.

For me happens this way too... But this, when I think in a Pois without threatment... What I'm saying is that my POIS improve, and, after some time, get bad again. And I realize, in this process of getting bad, that my Os was getting more pleasure.

But, for me, also happens the way you describe. The best sex I have, lower symptoms I will have... I think this have relation with tension...

Do you understand??? I don't know If I'm being clear... Sorry for my poor english...

[Prancer]

Me too, stronger orgasm or hotter sex = feel better

[demografx]

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...

To me it works in the opposite way: the stronger is the eyaculation and the more pleasurable is the orgasm, the better I feel afterwards.

For me happens this way too... But this, when I think in a Pois without threatment... What I'm saying is that my POIS improve, and, after some time, get bad again. And I realize, in this process of getting bad, that my Os was getting more pleasure.

But, for me, also happens the way you describe. The best sex I have, lower symptoms I will have... I think this have relation with tension...

Do you understand??? I don't know If I'm being clear... Sorry for my poor english...

Hi fidalgo,

Please do NOT apologize, u r perfectly clear!!

Best regards!
Demo

[Daveman]

For me happens this way too... But this, when I think in a Pois without threatment... What I'm saying is that my POIS improve, and, after some time, get bad again. And I realize, in this process of getting bad, that my Os was getting more pleasure.

But, for me, also happens the way you describe. The best sex I have, lower symptoms I will have... I think this have relation with tension...

Do you understand??? I don't know If I'm being clear... Sorry for my poor english...

What I feel is that it's though GOOD sex "cleans the pipes"! The process is completed. You feel like after a sneeze... complete and cleared.

When sex is not good, it doesn't seem to get completed. You climb for the summit, but the release doesn't fullfill, you are left sort of half empty/full.
Instead of like a sneeze, more like a cough, that still leaves the problem at half mast.

Sorry for the strange comparisons.

Maybe some hormonal cycle is left unterminated. Or in some cases I feel that there is still a little "gunpowder left in the barrel".... which gums up the works!!

[MP412C]

Hi everyone.  I have a few questions related to the Rutger's study.

1. What is the theoretical basis for the vagus nerve hypothesis?  Is it in anyway related to the Vagus Nerve Infection Hypothesis (VNIH) proposed by Tufts neuroscientist, Michael VanElzakker?

2. If the vagus nerve is indeed involved, would the pharmaceutical Ibudilast be a possible treatment?

3. Would electroconvulsive therapy also be a possible treatment?

Thank you.

[Defsync]

Under the topic of "tests, what kind, how assessed" I imagine a good start might be the neuropsychological tests that have been used to determine "chemo brain", cognitive impairment post chemotherapy, descriptions of which have sounded similar to what POISers experience.

Ive also read that PET scans were used to show cognitive impairment in the chemo brain studies, and I wonder what the diff in FMRI and a PET scan is.

[Defsync]

think it would be any good to email local news outlets and tell them this first of its kind research is about to happen? or maybe email the doctors (show that featured a blurb on POIS) ?

[Going less Crazy]

I know this has probably been mentioned before and I should have probably spent more time reading, but I would like to know if we could get tested for all possible hormones released after orgasm and an allergy to them, in my case I would like all possible post-orgasmic pituitary hormones released after sex tested, as this is where my POIS reaction is located.  Mainly because this is what I believe to be the problem.  Many people here have been helped by niacin, antihistamines that reduce histamine production and/or stop some aspect of inflammation which indicates an immune response to some hormone within our own bodies.  Thank you.

[Defsync]

The more Ive been thinking about it, I believe these guys are on the right path. The Vagus nerve can f you up in so many ways, so if an orgasm can send that nerve into some kind of excitatory shock or overdrive, it would be able to cause the majority of POIS symptoms. I have a friend who has been severely epileptic since birth due to hydrocephalus. At one point they removed part or all of her vagus nerve and lo and behold it cut down the frequency of her siezures tremendously.

I personslly have back n neck tendons that are eternally being stretched taught due to some damaged nerve that wont stop firing on my left side. Probably unrelated, but that symptom alone contributes to migrained, sprained neck muscles if i dont regularly exercise, and a strange dialation of my left eye bigger than my right eye at times when im tired or exhausted.

Im not sure how they are going to test the functioning/activation of vagus nerve after a male's orgasm, but im very excited to see the results. I hope they get enough male volunteers with confirmed cases of POIS.

[Daveman]

This is for everybody really.

Lately my POIS comes with heavy digestion issues. Or my POIS is very light (with niacin) or I end up with 3 or 4 days of bad stomach with nausea.

I don't know if I have developed some gastric problem (related or not to POIS), or if my POIS has just changed, and now upsets the gastric system more aggressively.

When it's bad, I can't eat anything. My nausea starts about an hour after eating, and lasts for 4 to 6 hours. It seems worse every other day. day 1 bad, day 2 light, day 3 bad, day 4 lighter... etc.

BUT, and this is why I put this here: I do vagal stimulation, and it helps tremendously. I started scratching my ears, where they would normally put the stimulator. That worked a little bit, but not if the problem was strong, and in any case didn't last long.

Lately, I've taken to scratching (as if I had an itch) the chest bone area. An area about 15 cm in diameter. Then I massage the upper middle part of the muscle that runs under the "clavicle??" on each side. I think that's what it's called. These are the bones that goo from the shoulder to below the adam's apple.

Honestly, it work in about 1 minute and lasts for a good time. And is repeatable. Not even strong medicine helps, but that does!!

I haven't tried it for other symptoms. I took niacin this last time, and probably didn't get a big enough flush. So the niacin seems to have prevented the cognitive symptoms, but has  left this digestive issue behind.

[Nightingale]

Will be trying this! And yes, it seems like digestive issues are going to have to be added to POIS symptoms. Definitely with age. I didn't have any issues as a teen, but now that I'm almost 30 I've been fighting digestive problems HARD

[FloppyBanana]

Interesting. I have to admit I have had my finger twiddling in my left (cybma /conch spot) since I heard about the vagus nerve stimulation via the ear.

BTW -  I had a cough years back for more than 6 months, a deep gut wrenching one. I stopped eating wheat and it went away nearly straight away. From what I understand wheat and gluten have something in them which acts as an anti-nutrient which can prevent the absorption of lots of other good things. I think your body must work out what is the bad boy.

FB

[Habibou]

Did the study start?

[Scary sheep]

Will be trying this! And yes, it seems like digestive issues are going to have to be added to POIS symptoms. Definitely with age. I didn't have any issues as a teen, but now that I'm almost 30 I've been fighting digestive problems HARD

Gah! Stop scaring me, I'm only 18 and my symptoms are hard enough already!

[Bizzy]

Dear Dr Komisaruk

 
Its nice to see that POIS is being recognized and that some research is being done on this condition.
My names Bizzy and I first started posting about this condition on a forum a little over 10 years ago.
I have some strong suspicions has to what might be causing this condition. If we discount possible genetic predispositions, there maybe environmental factors such as child abuse and early life antihistamine use. I experienced both where I was regularly beaten by my parents and given chlorphenramine for dust and pollen allergies.

 
I have had 30+ years to think about this condition, and so am in a good position to provide a hypothesis.
I think that when the brain histamine system is upregulated via either child abuse, antihistamines or even a vaccine. This upregulation then interferes with histamine's normal functional role in orgasm. So rather helping the brain to trigger pleasure, euphoria, then calmness and possible sleepiness. Things get stuck, the constant agonist action of histamine causes a catonoic state and continuous activation of the immune system.

 
The psychological illness's that this condition can cause are vast. I have suffered from 20 years of depression, social anxiety and OCD. A psychiatrist would begin to question your credibility, after all, how can one person suffer from every major class of mental illness, that's unheard of right ?. This is precisely what continuous ongoing full histamine agonist action can do.
Though substances that would help lower histamine's activity such as magnesium or redirection provided by niacin, non of these address the root malfunction at a cellular level.
We are probably referring to a malfunction in a very select area of the brain such as the hypothalamus, so measuring blood or brain histamine levels might not be useful.
As you can imagine 'histamine lock' can cause disease, and one such condition is TILT. Indeed I have developed terrible sensitivity to common substances such as coffee, lemon, cheese and some household chemicals.
I've done a lot of reading and still have no clue as to how normal brain histamine function can be restored.

 

Bizzy (U.K)

 

[demografx]

Bizzy, I forwarded your post to Dr. Komisaruk.

Demo

[Outsider]

"there maybe environmental factors such as child abuse and early life antihistamine use"

Hi bizzy
i had also a difficult childhood
always, nervous, angry, and fighting
And i think, it s important point for understanding the pois

I have also a lot of allergy
diary food, sun, peanuts, and inflammation with hot shower

but, for me i don t think so histamine is the key
i tried for one year 5 differents anti histaminic
it helps for the sun allergy, but only this that