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Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?
Quote from: GoingCrazy on 18/09/2011 03:09:52Quote from: pois1 on 17/09/2011 23:54:17Had 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.
Quote from: pois1 on 17/09/2011 23:54:17Had 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.
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.
Quote from: Guthrie on 18/09/2011 22:50:54Has 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.
Quote from: Quasar on 18/09/2011 22:37:47I'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?
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?
Quote from: Guthrie on 18/09/2011 22:50:54Quote from: Quasar on 18/09/2011 22:37:47I'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.
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
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=598537344Dr. 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,DemografxDaveman
Quote from: daveman on 20/09/2011 22:51:36There 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=598537344Dr. 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,DemografxDavemanwe 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.
Quote from: Itsthatskater on 20/09/2011 21:14:09Well 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.
Quote from: POIS-SUFFERER on 19/09/2011 02:15:56Quote from: Guthrie on 18/09/2011 22:50:54Has 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...