[demografx]

I wouldn't put too much credence on what Dr. Goldmeir and Dr. Kocsis say about Pois being a mental condition.

Excellent.

We need to FIGHT the "POIS = mental condition/origin" thinking wherever we can!!

This one stupid prejudice has hurt all of us enormously.

No one should ever accept a psychological/psychiatric diagnosis for POIS from anyone!

[victor.kons]

I wouldn't put too much credence on what Dr. Goldmeir and Dr. Kocsis say about Pois being a mental condition.

Excellent.

We need to FIGHT the "POIS = mental condition/origin" thinking wherever we can!!

This one stupid prejudice has hurt all of us enormously.

No one should ever accept a psychological/psychiatric diagnosis for POIS from anyone!

Totally agree, demo! We have suffered too much already when doctors treated us as "anxious" people, this lead us to nowhere. We don't need to put up with this anymore!

Victor

[daveman]

Hi guys!

This is for Davemen,

Since when you feel totally cured? I live with POIS since 2003 :/:/!!

Any secondary effect? can you see sex related scenes and not feel a little dizzy?

Thanks!

I've been taking niacin before orgasm now for about 6 months, and for the most part, I have only about 10% symptoms that come through a couple of times in the first two days and then nothing more.

I never had symptoms with sexual arousal without orgasm, some do. My POIS went from 5 to 10 days with 2 or 3 days of more intense brain fog. To just parts of the first two days and extremely light.

The biggest problem with this "cure" is the strictness of the remedy. Having to fast, which means you have to plan each sexual encounter. Sometimes if you don't take quite enough niacin or ar too horny to wait for the flush to subside, the POIS can be heavier too.

But compared to what it was I consider myself "cured".

[mat780]

Hello everybody!

For the ones who still haven't seen the excellent ABC Documentary, I've just uploaded the POIS part to our YouTube POIS Channel.

Follow the link:
http://www.youtube.com/user/POISchannel/videos [nofollow]

[John21 (OP)]

Doesn't Dr. Goldmeir see that we have good reason to be anxious? 

[daveman]

ObserverCenter,

Great job. Just saw the show! They treated the niacin solution wonderfully. Actually brought tears to my eyes, to see, that we are and will be helping POIS sufferers get through this.

Thanks for this too Victor K. who brought it to us through your forum.

The brief exposure of the forum(s) is SO great. Builds a hope brings pride to know that we are among the fore-front in the solution for POIS.

And MAN that restless genital syndrome is terrible too. Wish there was something we could do.

[napkynbass]

I ordered niacin and I'll try, but still did not realize what constitutes "flush", someone can explain me?

thank you

[daveman]

I ordered niacin and I'll try, but still did not realize what constitutes "flush", someone can explain me?

thank you

Over at our other forum there are several threads on niacin

The first talks about a sort of "super niacin", but in the end, only regular niacin is required.

also do a search on that same forum, there's lots on niacin.
http://poiscenter.com/forums/index.php?topic=174.msg4403#new

This second link probably has more direct instructions on how to take niacin.
http://poiscenter.com/forums/index.php?topic=319.0

[demografx]

Doesn't Dr. Goldmeir see that we have good reason to be anxious? 

Exactly right!

[demografx]

Click here to see Mat780's excellent YouTube POIS Channel!

[leo17]

Hey all, I just want to add from my experiences that for me playing video games (usually exciting video games like fighters or anything else intense) for long time also brings on the same mental effects I get from POIS, just not as severe. IMO I think this brain fog (which is the worst part) I get in my head could be a dopamine crash of a sort or a chemical imbalance in the brain related to excessive dopamine levels.

[Hoping]

Just watched the newest video. Well done!! It gives me a lot of hope. (I was surprised to see NSF actually make a brief appearance.)

[kurtosis]

I wouldn't put too much credence on what Dr. Goldmeir and Dr. Kocsis say about Pois being a mental condition.

Excellent.

We need to FIGHT the "POIS = mental condition/origin" thinking wherever we can!!

This one stupid prejudice has hurt all of us enormously.

No one should ever accept a psychological/psychiatric diagnosis for POIS from anyone!

Totally agree, demo! We have suffered too much already when doctors treated us as "anxious" people, this lead us to nowhere. We don't need to put up with this anymore!

Victor

The 'anxious person' treatment is easy for lazy and arrogant doctors. You mention sex and cognitive symptoms to them and their eyes light up. It must be psychosomatic they think. The wonderful thing for a doctor's ego in diagnosing a psychosomatic illness is that they can't really cure you. Any failure on their part to make things better is based on your psychological defences, unwillingness to go through months/years of CBT etc. Any relapse is related to your psychological illnesses and treatment may encompass catch all anti-depressives or anti-anxiety drugs. Now, here's the funny thing. If POIS causes fluctuations of neuro-chemicals rather than physical trauma (which it didn't on my MRI) then some of these drugs might work, specifically Bupropion. But that's not a cure for POIS as it wouldn't' address how after an O, it feels like our brains are "switched off".

Also, diagnosing a condition (POIS) based on considering interviews with 1 or 2 people with that condition is medically irresponsible. Imagine if a pathologist stated in court that they hadn't actually examined the body but they're confident in a diagnosis of "heart failure". Very smug but utterly useless.

[demografx]

I wouldn't put too much credence on what Dr. Goldmeir and Dr. Kocsis say about Pois being a mental condition.

Excellent.

We need to FIGHT the "POIS = mental condition/origin" thinking wherever we can!!

This one stupid prejudice has hurt all of us enormously.

No one should ever accept a psychological/psychiatric diagnosis for POIS from anyone!

Totally agree, demo! We have suffered too much already when doctors treated us as "anxious" people, this lead us to nowhere. We don't need to put up with this anymore!

Victor

Thank you, Victor!

[demografx]

The 'anxious person' treatment is easy for lazy and arrogant doctors. You mention sex and cognitive symptoms to them and their eyes light up. It must be psychosomatic they think. The wonderful thing for a doctor's ego in diagnosing a psychosomatic illness is that they can't really cure you. Any failure on their part to make things better is based on your psychological defences, unwillingness to go through months/years of CBT etc. Any relapse is related to your psychological illnesses and treatment may encompass catch all anti-depressives or anti-anxiety drugs. Now, here's the funny thing. If POIS causes fluctuations of neuro-chemicals rather than physical trauma (which it didn't on my MRI) then some of these drugs might work, specifically Bupropion. But that's not a cure for POIS as it wouldn't' address how after an O, it feels like our brains are "switched off".

Also, diagnosing a condition (POIS) based on considering interviews with 1 or 2 people with that condition is medically irresponsible. Imagine if a pathologist stated in court that they hadn't actually examined the body but they're confident in a diagnosis of "heart failure". Very smug but utterly useless.

Excellent exposé !

[nathan123]

Hi,

Today I got my report of CT SCAN of BRAIN.  I undergone for CT SCAN of Brain test in 2nd day of POIS and as per the report everything is normal.  Further, I also got blood test and Nutrition level test which is also a normal. But POIS is still exist.  Now my doctor advising me to go to a psychologist and he is telling that it is a psychological problem rather than physical. 

Further, in our country, Niacin tablets is not available.  I find B.complex tablet which is of following composition.
Each Capsule contain:
Vitamin B1 10mg
Vitamin B2 10mg
Vitamin B6 3mg
Nicotinamide 50mg
Folic acid 1000mcg
calcium pantothenate 20mg
L-lysine mono hydrochloride 150 mg
Vitamin B12 5 mcg.

Whether this tablet is appropriate and does it contain Flushing effect? Please help...

[napkynbass]

Hi,

Anyone try propanolol, indometacin, diltaziem or ergotamine before the "O"?

POIS can be considered as a primary sexual headache?

[demografx]

After an O, it feels like our brains are "switched off".

Yes. I would often imagine my horrific POIS impact as if my brain had undergone a temporary lobotomy!!

[demografx]

POIS can be considered as a primary sexual headache?

Dr Selwyn Dexter wrote about a POIS patient treated for headache as a primary symptom.

I can email you the paper if you PM me your regular email address. Meanwhile, here's a short synopsis:
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1

Personally, I did not have a good reaction to progesterone (I quit after 4 days), which is a treatment some of us here were very interested in exploring, in combination with testosterone ("T + P").

[mellivora]

Hi everyone,

Sorry I've been a while posting on here due to work and family commitments.

Wow Wow WOW!. Great job in the documentary observercenter! You've done us all a great service. 'Michael' the Australian guy was also excellent. This really helps all of us. Thank you, thank you, thank you And thanks to Dr Demasi and all the production team too.

There's been understandably quite a lot of backlash here against the interviews with Dr Goldmeier and Dr Kocsis. On the face of it these interviews appear to be unhelpful to us and can be interpreted as supporting the much maligned "all in your head" camp. As a patient of Dr Goldmeier's I've been asked by email to  put my opinion forward and in any case I feel like just a little more balance is needed.

First of all, let me make it clear that  if I were to guess at the most likely root cause of my POIS I would opt for a  physical theory - ie autoimmune / hormonal.  I have also, like many of you, battled with doctors unhelpfully dismissing this as "just a phase" or 'all in the head'.

Is Dr. Goldmeier a psychiatrist??? He's referred to as a psychiatrist on the show.

(I was under the impression that he was either an allergist or a urologist.)

Nordnurse, it was a surprise to me to see Dr Goldmeier labelled as a psychiatrist.  As far as I am aware, this is incorrect but I'll check with him. Via google, I found that there is a Dr David Goldmeier in the States who IS a psychiatrist. It could be that this is where the confusion arose. As far as I am aware, Dr Goldmeier in the UK (the one in the interview) is a specialist in genito-urinary medicine and is the "Clinical Lead" at Jane Wadsworth Sexual Function Clinic at St Mary's Hospital in London.

Also, for clarification, Dr Kocsis is a colleague of Dr Goldmeier and I have seen them both. This post is not intended as a defence of either of them. It is just my thoughts on the matter.

Firstly, neither Dr Goldmeier or Dr Kocsis say that POIS is actually psychosomatic although this is one theory they are investigating or "exploring" as Dr Kocsis puts it. Dr Kocsis is a psychologist so it is natural for her to consider POIS from a psychological perspective. Dr Goldmeier has openly admitted to me and in the ABC interview that he doesn't know what POIS is.  He clearly is looking at the psychology of it with Dr Kocsis but has also consulted with immunologist colleagues about POIS and prescribed me both diclofenac to test (anti-inflammatory) and levocitirizine (antihistamine). Joe Burger on the poiscenter forum found that levocitirizine (also prescribed to him by Dr G.) helped him. I have some but am yet to test it as I want to wait for a non-POIS health issue that I currently have to clear up first. My impression from discussions with Dr G. is that he is not dismissive of Dr Waldinger's theories but equally has a few reservations about them owing to the lack of controls in his studies (something Dr W has acknowledged himself).

It is normal in science to have more than one hypothesis about something and to test the hypotheses until the correct one or a better one is found. As long as it is done from a scientifically rigorous perspective, I don't think we should be angry, especially at this early stage, if someone wants to examine POIS from a psychological perspective. Its something that hasn't been done in a scientific way before and in fact this could end up helping to permanently eliminate a psychological explanation if the medical literature ends up concluding that this is not psychological. Of course Dr Waldinger has already gone some way to publishing that POIS  is not psychosomatic and if his future studies are more widely accepted as being carried out in a rigorous way (eg. with better controls) then this could do the job for us. What IS potentially damaging is if people see interviews by Dr Goldmeier and Dr Kocsis and interpret them as concrete factual explanations rather than theoretical ones. That is where the danger lies for us. In that regard it is also not that helpful to us that after Dr Waldinger's 2011 papers the media appeared to report that the cause of POIS had definitely been found. I was conscious of this during our reddit campaign. I was afraid people might read the news reports on the internet and conclude that actually the solution to POIS has been found. As we know, that isn't definitely the case.

As has been said in the past, there may be more than one cause of POIS. We all have symptoms that are broadly similar but there is variation within that and at this early stage of research we should be open to there being more than one explanation of POIS. Cornelius on the poiscenter forum states that he is now POIS free and believes his symptoms were a result of clinical depression. So one could interpret that in his case perhaps the cause was psychosomatic. The remarkable and repeatable results that others have been having with niacin are an example of cases that would definitely appear NOT to be psychosomatic.

I think it most likely that my POIS is not psychosomatic. Also, when I look around at other people, I would say that I am not generally an anxious person. I have stated here that I am trying an 8 week course of mindfulness based cognitive therapy (MBCT) - ie a meditation course. I realise that this could come across as  a wishy-washy limp and pointless exercise akin to throwing a wet flannel at an angry Kraken. So I wanted to clarify my thinking on this.

The course was a suggestion to me by Dr Kocsis. She didn't say I should try it, just that she thought it was a good book after I told her about another I'd read. I'm trying it partly out of curiosity as I've never known what meditation is all about and wanted to experience it first hand. I'm also trying it because I have heard good things from scientific sources about the benefits meditation can have. I'm actually NOT trying it as a cure for POIS. I'm also not depressed and feel that generally I have a good perspective on life - to some extent I think POIS gives one a good perspective on life where smaller everyday obstacles are seen as relatively insignificant. The meditation is just something I fancied trying for a few reasons.  We all go through difficult times coping with POIS and some people here do indeed report that they are anxious and depressed.  Perhaps an MBCT course which has been proven to help both those things could be beneficial to these people. Certainly I've found in the past that stress seems to make my symptoms worse. I don't think MBCT is a POIS cure but it might help some people cope with POIS and life generally. Anyway I'm on my 5th week and will report back on it at some point.

This has turned into a long post. And all this emphasises the need for more research. The NORD grant is not forgotten!