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  4. Post Orgasmic Illness Syndrome (POIS)
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Post Orgasmic Illness Syndrome (POIS)

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Offline horizon

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14660 on: 18/09/2011 23:07:18 »
Quote from: Guthrie on 18/09/2011 22:50:54
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

Or also compare Niacin with L-Histidine.

http://psychology.wikia.com/wiki/Histamine
Sexual response
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-histidine.



if L-histidine works too (prior, like niacin) then it could point towards low histamine at orgasm as a feature of POIS, if you get my drift.
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Offline POIS-SUFFERER

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« Reply #14661 on: 19/09/2011 02:15:56 »
Quote from: Guthrie on 18/09/2011 22:50:54
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.
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Offline GoingCrazy

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14662 on: 19/09/2011 05:52:01 »
Quote from: Quasar on 18/09/2011 13:27:08
Quote from: GoingCrazy on 18/09/2011 03:09:52
Quote from: pois1 on 17/09/2011 23:54:17
Had another O and this time I immediately took Benadryl and aspirin.  I feel surprisingly good given two Os so close to each other.  I'll have to try the green tea/fenugreek.

I took a Benadryl last time I had POIS.  It made me really tired and I could tell it stayed in my system for about 2 days, I just took one pill.

Is there anybody here that has heavy heartbeats at night?  Seems that especially right before bed I experience heavy heartbeats.  It will beat and than stop for a moment longer than beat again but much heavier, than return to a normal heavy heartbeat.

I also get that. I think it's called PVC's. It's usually a benign condition. People get them when they are nervous, or sometimes if you are low in some minerals (magnesium, potasium...).

I get more PVC's when i'm under Pois. I also get more orthostatic hypotension when i'm under Pois.

Thanks for the response, I always wondered if I was alone with this.  Maybe I am nervous and just need to relax and not always worry about this condition.
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Offline GoingCrazy

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« Reply #14663 on: 19/09/2011 06:00:51 »
Quote from: POIS-SUFFERER on 19/09/2011 02:15:56
Quote from: Guthrie on 18/09/2011 22:50:54
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

Regarding the anger part, I think its just really frustrating not "O'ing" so we cannot get rid of our testosterone.  I have built up anger throughout almost all of these days and try to keep it inside.  Any little thing will tick me off.  My brain fog seems a lot better, to the point where it's probably not even there anymore.  It is pretty much gone besides sometimes while I am sleeping.
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Offline Guthrie

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« Reply #14664 on: 19/09/2011 10:01:51 »
Quote from: POIS-SUFFERER on 19/09/2011 02:15:56
Quote from: Guthrie on 18/09/2011 22:50:54
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

Niacinamide is a synonym for nicotinamide -- so if it is effective for you, this could further indicate that it is not necessarily the flush per se that is the indicator.  It would be good for someone to test both the flushing and non-flushing varieties comparatively.
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Offline Quasar

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« Reply #14665 on: 19/09/2011 12:36:03 »
Quote from: Guthrie on 18/09/2011 22:50:54
Quote from: Quasar on 18/09/2011 22:37:47
I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex.  However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS. 

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

But on the other hand, i have read that B vitamins compete with each other for absorption. I mean, if you take too much Niacin, you may downregulate another B vitamin. So, i'm still not sure if it's the same to take 100 mg of Niacin alone, or take a B-complex which includes 100mg Niacin, supposing i could find one with the flushing-type.

So, now we can count at least 3 theories about Niacin:

A) It helps in cases of Histapenia (low histamine). Could be proved if L-Histidine also works for us.

B) It helps because it causes cerebral vasodilation (the same reason XN works).

C) It helps because it helps energy mitochondrial metabolism. This last theory can be proved if we try for a long enough period the two other agents that help energy: riboflavin and coenzyme Q10.

The two last theories (B and C) are the main reasons why Niacin is considered a migraine/headache preventive/abortive.
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Offline lauracostis

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« Reply #14666 on: 20/09/2011 04:12:10 »
Quote from: Quasar on 19/09/2011 12:36:03
Quote from: Guthrie on 18/09/2011 22:50:54
Quote from: Quasar on 18/09/2011 22:37:47
I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex.  However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS. 

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

But on the other hand, i have read that B vitamins compete with each other for absorption. I mean, if you take too much Niacin, you may downregulate another B vitamin. So, i'm still not sure if it's the same to take 100 mg of Niacin alone, or take a B-complex which includes 100mg Niacin, supposing i could find one with the flushing-type.

So, now we can count at least 3 theories about Niacin:

A) It helps in cases of Histapenia (low histamine). Could be proved if L-Histidine also works for us.

B) It helps because it causes cerebral vasodilation (the same reason XN works).

C) It helps because it helps energy mitochondrial metabolism. This last theory can be proved if we try for a long enough period the two other agents that help energy: riboflavin and coenzyme Q10.

The two last theories (B and C) are the main reasons why Niacin is considered a migraine/headache preventive/abortive.
I think L-Histadine would be a good test to try.  It seems counter intuitive in regards to our auto-immune theory, but I have been thinking about trying it for a couple years now after I felt bad all day after taking claritin one time.
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Offline lauracostis

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« Reply #14667 on: 20/09/2011 04:38:26 »
Here is something interesting to read about L-Histadine.


"Researchers are aware of the effects of increased levels of L-histidine, a precursor to Histamine, which can produce sensations of intense warmth that quickly spreads throughout the body. This warming effect is secondary to a release of the histamine that produces a dilation of blood vessels and capillaries, which results in subsequent increase in blood flow. The vasodilatation of the blood vessel is very similar to the flush felt instantaneously during sexual excitement. Orgasm is triggered when histamine is released in the body from the mast cells. These cells function as part of the immune system, but also cause the sexual flush experienced during arousal. For both functions, the active ingredient is histamine. When there is insufficient histamine in the body, histamine production is low and women find it difficult, sometimes even impossible to achieve orgasm. Individuals who release Histamine easily generally do not have difficulty in achieving an orgasm.         Pfeiffer, C. 1975. Mental and Elemental Nutrients: A Physician\rquote s Guide to Nutrition and Health Care. Keats. New Canaan:Connecticut."
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Offline Quasar

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« Reply #14668 on: 20/09/2011 11:25:41 »
I'm not sure if i had an allergic reaction to Niacin. The few times i've taken it, i feel something rare in my breathing. It's not severe, as i only took 100mg. Do you also feel something different in your breathing? It's like it's a little more difficult to inhale air. But not by much. Maybe it's just the flush  [???]
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Offline Guthrie

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« Reply #14669 on: 20/09/2011 12:30:47 »
Quote from: lauracostis on 20/09/2011 04:12:10
I think L-Histadine would be a good test to try.  It seems counter intuitive in regards to our auto-immune theory, but I have been thinking about trying it for a couple years now after I felt bad all day after taking claritin one time.

Yes, it seems that, even if POIS is related in some way to the autoimmune system, it could potentially be a matter of TOO MUCH histamine or NOT ENOUGH histamine. 

And with the niacin, it seems like it could potentially be doing either as well: either using up excess histamine, so that it isn't over-released in a negative way during POIS, or providing extra histamine, so that POIS doesn't cause a negative depletion of histamine.

But, testing L-histamine could potentially help to determine whether one of these possibilities seems more likely.  (Although it could also be that neither of them turns out to be the case -- but we'll only know through testing!)
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Offline Itsthatskater

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« Reply #14670 on: 20/09/2011 21:14:09 »
Well guys, this is kinda sad, Pois is ruining my life, Im missing school because im so sick from it and im too embarrassed to tell the nurse whats wrong. This is ruining my life. It really sucks
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Offline daveman

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« Reply #14671 on: 20/09/2011 22:51:36 »
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman

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Offline Quasar

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« Reply #14672 on: 20/09/2011 23:58:03 »
Quote from: Itsthatskater on 20/09/2011 21:14:09
Well guys, this is kinda sad, Pois is ruining my life, Im missing school because im so sick from it and im too embarrassed to tell the nurse whats wrong. This is ruining my life. It really sucks

I know...I also had problems with school. And now i have problems at work because of Pois. And i'm afraid to get a girlfriend because:

A) My sexual potency is very poor when i'm under Pois, nearly impotent. Does this also happen to you?

B) If she wants to have sex regulargy, i would be always in Pois.
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Offline lauracostis

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« Reply #14673 on: 21/09/2011 01:01:42 »
Quote from: daveman on 20/09/2011 22:51:36
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.
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Offline Guthrie

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« Reply #14674 on: 21/09/2011 02:22:32 »
Quote from: POIS-SUFFERER on 19/09/2011 02:15:56
Quote from: Guthrie on 18/09/2011 22:50:54
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

A new and enouraging development: when I read POIS-SUFFERER's response, I was somewhat surprised.  Niacinamide (= Nicotinamide) is a non-flushing form of niacin.  So, since we had generally had been attributing the success of both niacin and XN to its flushing properties, then one would think that the non-flushing form wouldn't be effective for POIS.  But, it apparently *was* working for POIS-SUFFERER.  So, what to make of this seeming contradiction?

I said to myself, "Hmmm, what would Galileo do?"  So, I went out and got a bottle of Niacinamide (which is a non-flushing form -- not the same as 'slow release niacin', which *is* flushing, but has a spread-out, rather than concentrated effect).  Last night, I took two 550 mg capsules, for a total of 1100 mg.  There was no flush whatsoever.  Two and a half hours after taking the capsules, I had an O.  The next day: essentially 90% POIS-free!!!  Possibly even 95%! And, this was in terms of basically all of my normal POIS symptoms: brain fog, mood, concentration, energy.  Definitely a noticeable difference even from the effect of my last trial, with 300 mg of the regular (flushing) variety of niacin, and which had worked pretty well (80-85%).  It may be that the overall amount (1100 mg vs. 300 mg) had something to do with it as well.

So, while I'll have to test it again to rule out one-time effect or placebo, the non-flushing Niacinamide seems pretty clearly to have worked *very* well.  This seems to reconfigure our basic hypotheses about why niacin works: from this result, it would seem that it is not the flushing that makes a difference at all!  Rather, it would seem to have to be some property that regular (flushing) niacin also shares with the non-flushing variety.

So, what is that property?  Not sure at this point, but even just this result can help point us in the proper direction.  I will certainly be testing it again, and others may want to try Niacinamide/Nicotinamide to see how your results compare to the flushing variety.  In my case, it was also an added bonus not to have to experience the flush, which was often pretty uncomfortable for me with the itching/heat.

We shall see...
« Last Edit: 21/09/2011 02:25:41 by Guthrie »
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Offline helloworld

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14675 on: 21/09/2011 02:38:42 »
Without reiterating all the affects everyone else has that I also experience, what I've found that works consistently to speed up feeling "normal" again is blending (not juicing) the following: kale (about a cereal bowl full,) blueberries (about one handful), strawberries(4-6), 2 bananas, Hershey's cocoa (non-alkalized -- about two teaspoons,) 1 celery stalk, baby leaf spinach (about half a cereal bowl,) red globe grapes (seeded, including the seeds, about 10-15 grapes) and a half red bell pepper. I generally make about 4 full mugs full and drink it in one sitting. If you try this, be warned, your stool will be quite unpleasant the first one or two days. I had two experiment with the kale dosage, as I was feeling very nauseated/dizzy using more than one bowl the next day when I was experimenting (still doing so, but so far, this blend is working for me.) Also be careful if you're on a low-oxalic diet, spinach and kale, and the berries do have a lot of oxalic acid. Hope this helps some people.
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Offline demografx

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14676 on: 21/09/2011 04:11:13 »
Quote from: lauracostis on 21/09/2011 01:01:42
Quote from: daveman on 20/09/2011 22:51:36
There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?  

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns.  We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth. 

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.”  Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle.  Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.”  Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry.  Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him. 

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry.  He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death.  They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago.  He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).


Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW!  Our group focus must dramatically change – from speculation to ACTION. 

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012.  That gives us six moths to raise ~$30,655.  Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge.  This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

An individual thread has been opened on the SMF forum for a brief discussion of  the details of this program at http://poiscenter.com/forums/index.php?topic=213.0 Thanks for your input. The database will be generated as soon as possible.

Your friendly POIS Forum Moderators,
Demografx
Daveman


we should be sending requests for donations to organizations and private donors who give money.  One or two outside donors could easily fund the minimum amount we need to get started.  I know somewhere there are lists of organizations that allocate money to charities and medical research to people who request and solicit them.  We should start soliciting these entities ASP.

Laurac, excellent idea! Can you take that on as a project as we pursue our own constituency?
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Offline Itsthatskater

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14677 on: 21/09/2011 04:38:14 »
Quote from: Quasar on 20/09/2011 23:58:03
Quote from: Itsthatskater on 20/09/2011 21:14:09
Well guys, this is kinda sad, Pois is ruining my life, Im missing school because im so sick from it and im too embarrassed to tell the nurse whats wrong. This is ruining my life. It really sucks

I know...I also had problems with school. And now i have problems at work because of Pois. And i'm afraid to get a girlfriend because:

A) My sexual potency is very poor when i'm under Pois, nearly impotent. Does this also happen to you?

B) If she wants to have sex regulargy, i would be always in Pois.


Yeah, when im with a girl its really hard for me to last because i put myself on a dry spell because of POIS. I have a doctors appointment coming up and im going to tell her all bout Pois and what she thinks can help, its worth a shot.

It sucks, I suffer from Pois for about 48 hours and then im good. So i mean i dont think I would have to worry that much but i definitly think Allergy medicines and stuff like that helps.
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Offline POIS-SUFFERER

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14678 on: 21/09/2011 06:24:06 »
Quote from: Guthrie on 21/09/2011 02:22:32
Quote from: POIS-SUFFERER on 19/09/2011 02:15:56
Quote from: Guthrie on 18/09/2011 22:50:54
Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

A new and enouraging development: when I read POIS-SUFFERER's response, I was somewhat surprised.  Niacinamide (= Nicotinamide) is a non-flushing form of niacin.  So, since we had generally had been attributing the success of both niacin and XN to its flushing properties, then one would think that the non-flushing form wouldn't be effective for POIS.  But, it apparently *was* working for POIS-SUFFERER.  So, what to make of this seeming contradiction?

I said to myself, "Hmmm, what would Galileo do?"  So, I went out and got a bottle of Niacinamide (which is a non-flushing form -- not the same as 'slow release niacin', which *is* flushing, but has a spread-out, rather than concentrated effect).  Last night, I took two 550 mg capsules, for a total of 1100 mg.  There was no flush whatsoever.  Two and a half hours after taking the capsules, I had an O.  The next day: essentially 90% POIS-free!!!  Possibly even 95%! And, this was in terms of basically all of my normal POIS symptoms: brain fog, mood, concentration, energy.  Definitely a noticeable difference even from the effect of my last trial, with 300 mg of the regular (flushing) variety of niacin, and which had worked pretty well (80-85%).  It may be that the overall amount (1100 mg vs. 300 mg) had something to do with it as well.

So, while I'll have to test it again to rule out one-time effect or placebo, the non-flushing Niacinamide seems pretty clearly to have worked *very* well.  This seems to reconfigure our basic hypotheses about why niacin works: from this result, it would seem that it is not the flushing that makes a difference at all!  Rather, it would seem to have to be some property that regular (flushing) niacin also shares with the non-flushing variety.

So, what is that property?  Not sure at this point, but even just this result can help point us in the proper direction.  I will certainly be testing it again, and others may want to try Niacinamide/Nicotinamide to see how your results compare to the flushing variety.  In my case, it was also an added bonus not to have to experience the flush, which was often pretty uncomfortable for me with the itching/heat.

We shall see...

Yep was not lying :-) I have clearly demonstrated with myself that it is not placedo, I do not get 90-95% however, more maybe 75%, but I have never up'd the dose to 1500mg, always 1000mg. 500mg per capsule.
I have been using it for many many months, my doctor told me to try it after I described all my
"issues", I spoke of it also months ago, but no one was on the XN/B3 path yet.......

PS.
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Offline daveman

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Post Orgasmic Illness Syndrome (POIS)
« Reply #14679 on: 21/09/2011 11:36:36 »
That's interesting about your doctor suggesting it!!! He must be very astute.

What type of doctor is he? Did he have any suggestions as to why you should try Niacin(amide)?

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