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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6461243 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16050 on: 16/04/2012 00:15:08 »
Doesn't Dr. Goldmeir see that we have good reason to be anxious?  ???

Exactly right!
 

Offline demografx

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« Last Edit: 16/04/2012 09:16:47 by demografx »
 

Offline leo17

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16052 on: 16/04/2012 00:35:32 »
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.
 

Offline Hoping

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16053 on: 16/04/2012 04:28:59 »
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.)
 

Offline kurtosis

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16054 on: 16/04/2012 08:39:21 »

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.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16055 on: 16/04/2012 08:46:10 »

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!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16056 on: 16/04/2012 08:49:25 »

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 exposÚ !
 

Offline nathan123

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16057 on: 16/04/2012 09:21:12 »
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...
 

Offline napkynbass

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16058 on: 16/04/2012 09:36:06 »
Hi,

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

POIS can be considered as a primary sexual headache?
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16059 on: 16/04/2012 09:58:07 »

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!!
« Last Edit: 16/04/2012 10:15:07 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16060 on: 16/04/2012 10:03:25 »

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").
« Last Edit: 16/04/2012 10:08:11 by demografx »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16061 on: 16/04/2012 11:08:42 »
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!
« Last Edit: 16/04/2012 11:52:06 by mellivora »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16062 on: 16/04/2012 11:09:20 »
Caution: Depressing Post

I'm losing it. For some reason my POIS is getting worse. The worsening may be due to a number of things. Most likely Effexor and betaine hcl, but could perhaps be due to my two months use of Klonopin for anxiety. Either way I've waited weeks and the pain in my knees has not gone away. I estimate than in a few years time I will no longer be able to stand on my feet or walk because of POIS. My next step is to see if I can get my testicles surgically removed. I've read it can be done for $3,000 to $4,000 but I'm not sure if my mom has that much money. I need to talk to her about it. If that isn't possible I may resort to self castration. Even if I mess up the surgery and bleed to death or get an infection and die a slow death of gangrene it will still be better than slowly rotting away in this room that has become my world. The treatments I've mentioned previously still work to dull the pain of POIS, but the POIS has become too much even for those treatments to work. My face and eyes are too irritated to even read and participate on this forum much of the time now so this may be my last post here. Thanks to all of you for all the great work you've done together to fight this monster that is POIS.
Vincent Marcus,
Your situation sounds terrible. Please hang in there buddy. You've made some great posts on this forum and are a really valued forum member.  I mean that.

Try not to look too far into the future. It hasn't happened yet. None of us knows what the future holds for us. I had a recent health scare and it was easy to see it as the end of the line for me before a diagnosis was even made. I can understand things are feeling desperate for you right now but try hard not to make assumptions about the future.

By all means look into castration like Animus did but you are worth taking care over. Don't resort to doing it yourself, if you're going to do it, get it done professionally. Do talk to your mom. I know what its like for a room to become your world - I'm sure a lot of sufferers can relate to this although admittedly I haven't had quite the same symptoms of knee pain that you are experiencing now.

When was the last time you saw a doctor? I know they don't understand POIS but perhaps you should present your symptoms as they currently are. Its a long time to have knee pain and perhaps they might be able to pinpoint a physical reason for it this time. I presume you have tried the usual anti-inflammatories and painkillers a long time ago.

Seriously dude, we care about you. Keep talking to us.
« Last Edit: 16/04/2012 11:28:17 by mellivora »
 

Offline acronym

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16063 on: 16/04/2012 11:25:19 »
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. 
A CT scan I assume would only reveal physical aberrations, and they would need to be of a reasonable magnitutude to stick out. I would be surprised if we all had obvious physical brain deformity. I think our problems are more micro level. Most people with epilepsy have normal CAT scans for instance. I believe functional brain imaging (SPECT/PET scans) would be more beneficial in our case. I had a PET scan done the day after an O and it showed obvious blood flow/brain glucose metabolism irregularities. (note I have also been diagnosed with CFS and many CFS patients show abnormal results on brain blood flow scans).

I SPEC scan just after an O + a baseline (2 wks since an O for instance) would assist us in proving this condition is definitely not psychosomatic, and maybe what regions of the brain are effected but I doubt it would likely reveal the cause of the condition.
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16064 on: 16/04/2012 12:01:58 »
I was thinking castration might be a possible way to minimize symptoms for me. Maybe try the chemical route first, anti-androgens.
« Last Edit: 27/06/2013 14:32:46 by Vincent M »
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16065 on: 16/04/2012 12:04:17 »
Another thing I could try is testosterone, but I'm pretty sure my testosterone levels are high since I am constantly desiring sex and masturbate multiple times every day. Maybe that should be my next step. Then there's silodosin, but that's kind of a shot in the dark especially with my ejac frequency.
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16066 on: 16/04/2012 12:08:50 »
I think it would be beneficial to me if I could lower my libido. Even if it doesn't help my POIS directly it will allow me some relief from the constant psychosis of this spiral of self destruction. Being addicted to the thing that is killing you and the addictive substance being as easily obtainable as just a few sexual thoughts or a slight unintended touch to the genitals. The stress of always having to resist is maddening.
« Last Edit: 27/06/2013 14:34:25 by Vincent M »
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16067 on: 16/04/2012 12:37:11 »
Does anyone know where I could get hookworms for helminthic therapy to treat POIS? I live in USA.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16068 on: 16/04/2012 12:39:56 »
Hi Vincent Marcus
Sorry about your mom's reaction. Have you showed her the forum, the reddit post or Dr Waldinger's papers. Maybe that would help convince her if she really doesn't believe POIS is real. You have people here who KNOW its real.

As far as I'm aware helminthic therapy hasn't been tried by any POIS sufferers. I need to read more about it (though did read an article in new scientist a while back). My impression is that this is one of those "latest things" that people are jumping on the bandwagon for without really understanding and I don't think its a good way to go for us, especially as we don't really know the underlying cause of POIS. I'm also wary of trying medications because of side effects, not least because my POIS started after I had radio-active iodine treatment for an overactive thyroid  - that may or may not be coincidence but I don't experiment with treatments without careful consideration now.

Perhaps seeing a different psychologist could be beneficial to you in terms of helping you cope with your situation. If you are feeling suicidal, perhaps call the Samaritans. All I can say is that when you feel you're in the deepest, darkest hole you've ever been in and are feeling helpless and out of all out of hope, its totally possible that something will change and help you out at some point. Although I've never contemplated suicide, in the early years of my POIS I went through some very dark times, the darkest of my life, and it definitely gave me an understanding as to how some people with POIS would feel suicidal. When things improved a bit for me I looked back and was amazed that I made it through that period the way I did. I know from your words that things are desperately hard just now.

Accept that things are really difficult for you right now. Its not what you want but its what's happening right now. Please believe that if you hang in things can improve and you'll be really glad you pulled through. Your efforts to help yourself and others on this forum speak volumes about the type of guy you are. We want you here!
« Last Edit: 16/04/2012 13:00:52 by mellivora »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16069 on: 16/04/2012 12:43:23 »
The way I see it is if achieve castration I will at the very least reduce my freakish sex drive so even if it doesn't help my POIS it will allow me some relief from the constant psychosis of this spiral of self destruction. Being addicted to the thing that is killing you and the addictive substance being as easily obtainable as just a few sexual thoughts or a slight unintended touch to the genitals. The stress of always having to resist is maddening. It's like being allergic to the very air I breathe.

No harm in getting your testosterone tested although it does sound as you say like yours is not low. Maybe you'll find it useful to PM Animus about castration. He probably knows more about it than any of us. I know he still monitors his PM's from time to time as I PM'd him when we were doing the reddit campaign.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16070 on: 16/04/2012 13:06:36 »

As far as I'm aware helminthic therapy hasn't been tried by any POIS sufferers. I need to read more about it (though did read an article in new scientist a while back). My impression is that this is one of those "latest things" that people are jumping on the bandwagon for without really understanding and I don't think its a good way to go for us, especially as we don't really know the underlying cause of POIS.
I may have made too hasty a statement here. It seems there are universities seriously looking at this for autoimmune conditions. Its early days though...
 

Offline Vincent M

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16071 on: 16/04/2012 13:10:27 »
Thanks for your kind words, Mellivora. I've been reading up on helminthic therapy and like you just said there seems to be a lot of logic and science to back it up so there's a good chance I'll try it if I can obtain some hookworms. I have a lot of thinking to do. I will try to check in on the forum still, but it probably won't be as often since I'll most likely now be forced to drown my pain in various electronic entertainment.
 

Offline martin88

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16072 on: 16/04/2012 13:33:25 »
Thanks to the 2 POIS sufferers and doctors who participated in the show.
Good points Mellivora. I wrote that before reading your post:
About the "POIS psychological" debate, I don't understand all of Dr Goldmeier's interview (because of my english) but at 2.45' in the video he's asked if POIS is psychological, his answer is "we don't know". That's all I need to know!
I think POIS is physiologically causing anxiety by affecting the brain or something else. It's not only the situation, that's how I feel it.

At the beginning he's saying there's 40 POIS cases (not sure if he added "officially"), I think we're around 400 cases reported in the forum. Is he informed of that?(for the next interview). Personally I think there are more POIS sufferers. At the beginning of my POIS for at least 6 years I was very tired without knowing why, and it was because I never went into sexual abstinence to feel the big difference. If you asked me if I was tired after orgasm I would have said no!
« Last Edit: 16/04/2012 13:36:07 by martin88 »
 

Offline daveman

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16073 on: 16/04/2012 16:43:41 »
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...

I'm not really sure about doses, but a  bottle that I saw here had much more than your formula. Something like 200mg each of B6 and b12. So if someone could give us an idea of the B-Complex doses that work. I think the SMF forum had a recent post about a successful application of B-Complex.

Niacinimide can also help, but you need about 1000 mg, and also taken before the "O". Perhaps Guthrie can repost his experience, dosage and application of niacinimide. (which is sometimes available when niacin is not)

Niacin is tough to get in Chile too, but I have found B1 B3 Vit C combinations, which should work. $14 for 20 pills!!



Yeah, we can┤t expect much from "regular doctors". Even among experts the diagnosis is often doubtful. We REALLY need research.

 

Offline jferr

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16074 on: 16/04/2012 17:46:09 »
Hey guys. Hope you are all doing well in your endeavors.

Niacin has helped me a great de over the past few months. And with the additions or spirinula, vitamin c, vma and a few minerals I have been able to grt back to work. My POIs is constant and worst within the first few days, but eith these supplements I have been able to work even the day after orgasm. I need about 400 mg niacin to feel a flush without food, I take about 1000 mg of spirulina and 1000 mg of chlorella, and 1000 of vitamin c right after orgasm and the next day.I have been capable of working and working hard for the past few months. Recently, though, I feel as though the symptoms are coming back. The supplements seem to have become less and less effective over time even though I am hardly having an orgasm once a week. The fatigue, confusion, and hot flashes are coming back and I'm not sure what to do. I don't know hownpossible it is to have built a tolerance to these medications. Really having a difficult time. I would be willing to hear any suggestions you guys may have.

Thanks,

Jon.
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16074 on: 16/04/2012 17:46:09 »

 

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