[jferr]

demografx, I too, learned a long time ago not to be too 'nice'. I'm 24 now but from 16 or so up until about 20 I was forced out of many offices. I then got too aggressive for my own good. Finally a couple of years ago I learned how to approach doctors in the right now, Being aggressive when need be. I was able to convince my doctor to do a full range of testing of everything including complete thyroid, prolactin, progesterone, free T, and catecholamines.

If the sophisticated testing you did includes things I somehow haven't tested for it would be greatly appreciated to get a list of the items to present to my doctor, If you wouldn't mind.

I have consistently been weight training since about 18 or 19 years old. Not only because I like to play sports but because it helps my situation. I've only taken a few weeks off in about 6 years because I feel worse without it. I do wonder if it affects my testing levels..

jferr, I can relate to what you said about being paranoid around people.  I guess you can call this social anxiety.  I believe it is probably some guilt-type reaction that your subconscious sets off after orgasm.  Sort of like you sense that people know what you did.  I usually get this after having orgasmed, especially to porn.  That is why I try to stay away from porn.  I don't really get the effects if i just masturbate without any material.  You don't have to look at porn to masturbate, but you can masturbate without looking at porn.  If i do get this feeling,I will have the anxious feeling for that day and maybe the next, the day after that it goes away.  After discovering Niacin I am a lot better too, but I also make the mistake of taking niacin after O because I really do not plan my orgasms.

GoingCrazy, thank you for your response..

My paranoia is part of my constant symptoms.. I explained my issue as best I could a few posts above. I understand what your saying and I'm glad you've conquered it, but my paranoia is not a guilt thing or anything like that. Its really unexplained and I suspect its from a lack of certain neurotransmitters resulting from this problem. My symptoms have been constant with a POIS on top of them making them worse for a few days and the paranoia jumped on the train about  ayear ago after trouble thinking, slurred words, confusion, dulled emotions, fog, and physical symptoms such as short breath, pains, sluggish, and fatigue. These things are always present for me. I am thinking the paranoia has something to do with somewhere in the dopamine or norepinephrine range but I really don't know where to start.

The Niacin has made me a little more alert and has helped everything including the paranoia but not nearly enough. I have been able to think enough for small talk but nothing more than that, but it has given me more energy. I've just recently ordered a bunch of supplements like vma and such to experiment with them. I can only experiment once every couple of weeks because thats how bad my POIS affects me, I always recover different but never fully.

I am also currently seeing a neuropsychiatrist that I may ask for Wellbutrin or Strattera, I tried celexa and it did nothing for me but dull me even further. Everything has felt like an engine 'turn off' from day one so I've always felt like I needed some type of core stimulant, I dont know if that makes sense to those reading this.

Regaurdless, progress is being made. Less than a year ago we found fenugreek and now we are past niacin looking for something better. We will beat this.

Thanks guys,

Jon.

[badgerstripe]

I just spoke on the phone with the center at Harvard.

http://alzheimersweekly.com/content/alzheimers-disease-research-center-harvard-medical-school [nofollow]

They want me to put together an email describing the correlation between POIS, relatives who have Alzheimers, and the similarity in mental symptoms one gets from POIS to the symptoms one gets from Alzheimers.

This is who I am to send the email to:

http://madrc.mgh.harvard.edu/liang-yap-phd [nofollow]


So I am going to ask one last time, just in case, do any of your relatives, for those who have POIS, have or had Alzheimer's? If you dont know for sure, please check and post here if so. After a few days I will compose the email and send it out.

My paternal grandfather and his daughter, my auntie, had Alzheimers in the couple of years before their deaths, they were both in their 80s. My father died at 57, an age before which Alzheimers is less likely to develop.

[badgerstripe]

jferr, I can relate to what you said about being paranoid around people.  I guess you can call this social anxiety.  I believe it is probably some guilt-type reaction that your subconscious sets off after orgasm.  Sort of like you sense that people know what you did.  I usually get this after having orgasmed, especially to porn.  That is why I try to stay away from porn.  I don't really get the effects if i just masturbate without any material.  You don't have to look at porn to masturbate, but you can masturbate without looking at porn.  If i do get this feeling,I will have the anxious feeling for that day and maybe the next, the day after that it goes away.  After discovering Niacin I am a lot better too, but I also make the mistake of taking niacin after O because I really do not plan my orgasms.

I too have noticed a mild paranoia that seems to corresponds with the POIS period, most severe the day after O, then fading gradually in the next two or three days. This is nothing like in the psychotic range but it does make me feel more inclined to think people might be talking about me or looking at me strangely and make me defensive. A couple of people close to me have noticed this as well. This could be hormonal but could also be linked to guilt feelings about sex, though i can't really say i have many of those nowadays.

[badgerstripe]

There is no doubt that zinc supplements have hastened the recovery period from pois but hasn't prevented it. The best results have come from recent use of niacin. Hope everyone had happy holidays.

They're relatively cheap so I take both. 2 ZMA supps at night and the niacin first thing in the morning to get a good flush. Throw in a high strength multi-vitamin & mineral (I use the Quest one if that isn't breaking forum rules) for all my other vit needs and 4g of Vit C during the day and I feel almost bouncy. Actually, I'm still remembering quite vivid dreams and waking up much happier. And that's in a 7 day period where for various reasons, all of them good , I ended up having 3 O's. So I broke my own rules & still feel good.

Sounds great kurtosis. Do you (and others who take it) take Niacin every day or just before an O?

[GoingCrazy]

jferr, how long have you been battling POIS?  For me the paranoia was also there mostly all the time, but the longer I have battled POIS the less severe my symptoms have been and the shorter duration they have lasted.  I also believe it to be some neurochemical hangover or imbalance.  Over just about 3 years I've managed to bring my POIS down from lasting about a week, to just about a day.  I am saying that maybe if you just realized about POIS that you may need to wait some time before your "constant symptoms" gradually lessen in severity.

[GoingCrazy]

There is no doubt that zinc supplements have hastened the recovery period from pois but hasn't prevented it. The best results have come from recent use of niacin. Hope everyone had happy holidays.

They're relatively cheap so I take both. 2 ZMA supps at night and the niacin first thing in the morning to get a good flush. Throw in a high strength multi-vitamin & mineral (I use the Quest one if that isn't breaking forum rules) for all my other vit needs and 4g of Vit C during the day and I feel almost bouncy. Actually, I'm still remembering quite vivid dreams and waking up much happier. And that's in a 7 day period where for various reasons, all of them good , I ended up having 3 O's. So I broke my own rules & still feel good.

Sounds great kurtosis. Do you (and others who take it) take Niacin every day or just before an O?

I've been taking Niacin about twice every week, once on Sunday, and once on Wednesday or Thursday.  I still need to see the difference between taking it pre-O versus post-O.  I've only been taking it post-O and that does not do as much as I would like.  I'm pretty sure I have taken it pre-O maybe once on a Thursday morning and I O'd on a Thursday night.  I remember experiencing no symptoms.  But my question is why does the Niacin really only work pre-O as opposed to post-O?

[observercenter]

I remember experiencing no symptoms.  But my question is why does the Niacin really only work pre-O as opposed to post-O?

GoingCrazy, stop taking the niacin after the O. It is useless. You could get relief for 2-3-4 hours - but you are going to get symptoms again after this time passes by.
Niacin pre-O *-1-2-3hour before or 15-20 min after you get the flush* and better in non-full stomach has COMPLETELY blocked my POIS symptoms(No digestive problems, no brain fog, no straw berry shaped hair, no fatigue, no lethargy...). We could discuss why is the reason that it is working, it could be that the histamine release is blocking the later inmune response against semen -misleading your organism- or maybe it is producing the necesary histamine to fight against POIS. We really do not know.
I have found that if i take an anti-histamine(H1) during the day and i take the niacin on this same day and have an Orgasm, it is not going to work completely, maybe i could have a very mild brain fog and slighty fatigue. I think this could be discussed here.
I suggest you to CRUSH the niacin into powder before taking it. It will be more effective*fast.

Oh... and i nearly forgot:
Happy new year for all of you!! O8)

[jferr]

jferr, how long have you been battling POIS?  For me the paranoia was also there mostly all the time, but the longer I have battled POIS the less severe my symptoms have been and the shorter duration they have lasted.  I also believe it to be some neurochemical hangover or imbalance.  Over just about 3 years I've managed to bring my POIS down from lasting about a week, to just about a day.  I am saying that maybe if you just realized about POIS that you may need to wait some time before your "constant symptoms" gradually lessen in severity.

GoingCrazy, I have been battling POIS for 8 years. It started suddenly with dulled emotions one day at orgasm when I was 16 and has not since lifed. Only has gotten worse. Paranoia came about around 2 years ago. I have waited months without orgasm before but only recover to a certain level which has gotten less and less over time. When this suddenly started at that moment when I was 16 it physically felt like an engine turned off in my head, I then developed my POIS on top of it not long after. It has been hell. The symptoms have just become more wide spread. Thankfully since the niacin I have had some minor relief but I am desperately searching for more.

Best wishes.

[demografx]

If the sophisticated testing you did includes things I somehow haven't tested for it would be greatly appreciated to get a list of the items to present to my doctor, If you wouldn't mind.

MY ENDOCRINOLOGIST'S LABWORK ORDERED FOR POIS


Out of reference range

-PROLACTIN

Extremely high (reason for MRI of the pituitary gland - all turned out ok)

-TESTOSTERONE(Bioavailable Testosterone, Free Testosterone, Total Testosterone, Sex Hormone Globulin Binding)

"Free T" is low; others I don't have reference range on summary.

In reference range
-DHEA-SULFATE

-FSH (Follicle Stimulating Hormone)

-LH (Luteinizing Hormone)

-TSH (Thyroid-Stimulating Hormone)

jferr, the "sophisticated testing" meant two things to me: 1. a major university research laboratory vs. my GP's local lab and 2. Working with an endocrinologist vs. urologist or GP.

You probably have covered much of this testing, yours sounds very thorough.

[demografx]

Best wishes, everyone, for a POIS-free 2012!

  daveman                                   demografx

[badgerstripe]

There is no doubt that zinc supplements have hastened the recovery period from pois but hasn't prevented it. The best results have come from recent use of niacin. Hope everyone had happy holidays.

They're relatively cheap so I take both. 2 ZMA supps at night and the niacin first thing in the morning to get a good flush. Throw in a high strength multi-vitamin & mineral (I use the Quest one if that isn't breaking forum rules) for all my other vit needs and 4g of Vit C during the day and I feel almost bouncy. Actually, I'm still remembering quite vivid dreams and waking up much happier. And that's in a 7 day period where for various reasons, all of them good , I ended up having 3 O's. So I broke my own rules & still feel good.

Sounds great kurtosis. Do you (and others who take it) take Niacin every day or just before an O?

I've been taking Niacin about twice every week, once on Sunday, and once on Wednesday or Thursday.  I still need to see the difference between taking it pre-O versus post-O.  I've only been taking it post-O and that does not do as much as I would like.  I'm pretty sure I have taken it pre-O maybe once on a Thursday morning and I O'd on a Thursday night.  I remember experiencing no symptoms.  But my question is why does the Niacin really only work pre-O as opposed to post-O?

My recent experimentation in the last 3 weeks or so has shown me the following.

Niacin:
Post O has made my symptoms worse than ever
1.5 hours before O on an empty stomach with a flush - no symptoms at all!
1 hour before O with a full stomach, barely noticeable flush. Symptoms which were probably half as severe as normal.

There were no other circumstances i can spot which would have effected my symptoms and clearly longer-term experimentation is needed with this but so far it looks promising. I can only speculate on *why* this appears to work and the answers must lie with the sort of testing that demografx and others on this forum have undergone.

The explanation that the Niacin-induced flush is producing the necesary histamine release for an orgasm makes sense to me, especially as my symptoms were so much worse when taking Niacin after an orgasm which suggests over-depletion of histamine but i imagine the process is much more complex than this.

Thankyou for the suggestion of crushing of the Niacin tab observercenter!

[John21]

I just spoke on the phone with the center at Harvard.

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So I am going to ask one last time, just in case, do any of your relatives, for those who have POIS, have or had Alzheimer's? If you dont know for sure, please check and post here if so. After a few days I will compose the email and send it out.

My grandmother died with Alzheimers, but a connection to POIS seems improbable to me.

[kurtosis]

POISers who had parents/grandparents/close family members with Alzheimers:

Kurtosis
martin88
hurray
Defsync

Is there anyone else? This is enough for me to contact an Alzheimers research center at Harvard about this "coincidence" in hopes that some correlation may bring insight to either condition.

Interesting joint study on the testosterone levels of older men with Alzheimers. University of Hong Kong and St. Louis University in Missouri.
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So saying there might be a relationship between a disease with a set of sexual / hormonal symptoms and alzheimers isn't that much of a stretch. Someone should want to publish about this!

While you're asking the question about Alzheimers, then could you ask the question about Parkisons also?
I'm not aware of any relatives who have had it but it's interesting given some of the treatments people have suggested boost dopamine levels, in theory.

[martin88]

We never know what we can get from having POIS cases studied at Harvard, if it goes till there.
Alzheimer is very frequent with aging so we would have to prove it's more frequent in POIS families.

My experience with niacin months ago was not very long so what I'll say about it might be wrong.
I took 25mg after orgasm --> no effect on POIS but I had a good sleep during the afternoon wich is unusual for me.
I took 100mg before orgasm --> I had premature ejaculation (I usually have a feeling of PE but there it was real PE). This time niacin helped my POIS but not all symptoms. I definitely had improved thinking and focus, less brain fog. However I still had full physical fatigue and exhaustion.

Happy new year to everyone!!!
Hope we'll make some new progress.

[Starsky]

READ THIS ARTICLE: http://jpet.aspetjournals.org/content/327/3/665.full.pdf [nofollow]

ABOUT HISTAMINE: Methylnicotinate had a weak effect on inducing histamine release from human mast cells,
whereas niacin did not increase rat plasma histamine levels. Moreover, the H1-receptor antagonists brompheniramine,
chlorpheniramine, diphenylhydramine, and ketotifen did not block niacin-induced skin temperature increases. Combined,
these results suggest that histamine is not involved in niacininduced flush


I think Demografx was taking Aspirine to reduce the flush. Aspirie inhibits the effect of prostaglandins, but taking aspirine and niacin didnt make a difference for him so i think prostaglandins are not important. What is left is SEROTONIN. The effect of serotonin can be blocked by taking antihistamines, so i think thats the explanation of Observers case. What my allergist said, histamine and serotonin have the same group of receptors and serotonin can bind to histamine receptors(dont know to which ones) and could work as an antihistamine.

[demografx]

Happy new year !



(Inappropriate    ? )

Perfect, B_Jim! 

[Omen 30]

Hi kurtosis, my grandmother,her two brothers all are having alczimers and I have always had the feeling that the alczimers has got something to do with my pois...my granny is around 90 years age...

[daveman]

Happy new year !



(Inappropriate    ? )

Perfect, B_Jim! 

If we can make as much advance this coming year as we have this year, I'll be a happy man. If we can actually reach our donations goal, I'd have to take niacin all year!!

Have a POIS free New Year. I "celebrated" last night, and thanks to niacin, I'll even be enjoying a late New Years party tonight!!

[demografx]

Happy new year !



(Inappropriate    ? )

Perfect, B_Jim! 

If we can make as much advance this coming year as we have this year, I'll be a happy man. If we can actually reach our donations goal, I'd have to take niacin all year!!

Have a POIS free New Year. I "celebrated" last night, and thanks to niacin, I'll even be enjoying a late New Years party tonight!!

And I second THAT!!

[rock27]

HAPPY HAPPY NEW YEAR TO ALL POIS-ERS!

May 2012 bring happiness and health to all. That we will conquer.
I wish all to have a (normal) life and (normal sexual) relations in 2012.

[demografx]

Rock, wonderful New Year's POIS sentiment!!

[kurtosis]

Happy new year to you and your families. I haven't been on this forum long but I'm very excited about the progress and the energy displayed by all. If we can do this much with POIS, just imagine how much we can achieve without it.  Let's make that our goal for 2012.

[B_Daniel]

READ THIS ARTICLE: ...sorry, you cannot view external links. To see them, please REGISTER or LOGIN

ABOUT HISTAMINE: Methylnicotinate had a weak effect on inducing histamine release from human mast cells,
whereas niacin did not increase rat plasma histamine levels. Moreover, the H1-receptor antagonists brompheniramine,
chlorpheniramine, diphenylhydramine, and ketotifen did not block niacin-induced skin temperature increases. Combined,
these results suggest that histamine is not involved in niacininduced flush


I think Demografx was taking Aspirine to reduce the flush. Aspirie inhibits the effect of prostaglandins, but taking aspirine and niacin didnt make a difference for him so i think prostaglandins are not important. What is left is SEROTONIN. The effect of serotonin can be blocked by taking antihistamines, so i think thats the explanation of Observers case. What my allergist said, histamine and serotonin have the same group of receptors and serotonin can bind to histamine receptors(dont know to which ones) and could work as an antihistamine.

That's quite interesting, and you could be on to something.  I may be stating the obvious here, but ultimately we need data like this to lead to explanation of why Niacin helps us more than the average anti-histamine.     

[demografx]

Happy new year to you and your families. I haven't been on this forum long but I'm very excited about the progress and the energy displayed by all. If we can do this much with POIS, just imagine how much we can achieve without it.  Let's make that our goal for 2012.

kurtosis, many thanks for that upbeat New Year's message!

[GoingCrazy]

Happy new year to everybody also...  I drank last night and usually alcohol makes me feel somewhat better and helps me not to think of symptoms I had a pretty bad headache last night leading into this morning.  Sometimes I feel better the next day after drinking but today I did not.  Perhaps it was because I was drinking hard liquor and not beer.  Probably something in the beer that makes me feel better the next day.

And about Alzheimer's, I have had no family members diagnosed with it, actually most of them seem to have their mind in tact and living late into their 80's and 90's... I only have cancer as a problem within my family.  I also have a close relative that is working in the Alzheimer's field, maybe I could tell him about POIS.

[demografx]

Curious if there is a link between marijuana (neurotransmitter depletion) and pois for some people

I think it would be worthwhile to study marijuana's effect on POIS in a responsible research study.

Medicinal marijuana research has been deemed worthy of study of other illnesses, why not POIS?

It has been classed by some as an "active placebo", highly susceptible to the participant's mood as well as the setting or environment he is in.

So there's a possibility it could work on some people, and backfire on others. But worth studying, I think.

From Marijuana thread at POIS Center forum:
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[jferr]

Hey guys, nocturnal emissions are something we all struggle with, mostly because we cannot prepare for them. Does anyone know of an optimum supplement combination to take?

[acronym]

Hi Acronym,
Are you taking Niacin also? For me, that seems to be making a big difference. I'm guessing niacin in the morning releases serotonin which has an anti-depressant effect. I'm also walking more as I've more energy. Perhaps the combination of the pyroluric treatment at night and the niacin in the morning and increased exercise is producing a kind of positive feedback loop.

All I can say is that I feel much better since I started taking the niacin and the ZMA.
There are 2 other factors I can think of. 1) I never have more than 1 O a week anymore. Too much hassle and I rarely get NE's so that's not a problem for me. 2) I drink chlorella most days which I'm told is good at chelating copper out of the body. The first few days felt a bit odd and
this makes me very "regular" but I think it may have helped me make progress with the pyroluric treatment this time. The other sign that something is working is a fungal infection has cleared up. I remembered at the time that the "holistic doctor" had said such infections thrived in bodies where there was a poor copper balance. She seemed to suggest that some people store copper in the tissues but their blood plasma copper was low due to some misfiring enzymatic reaction. I must download a few papers on this as I thought it sounded like crap at the time. I guess sometimes we dismiss good advice if we don't like the packaging
There's no doubt these supplements have made a difference to my clarity of thought and level of energy.

Yes I am. I initially tried the nicotinic acid (150mg) and I thought it helped reduce POIS symptoms but just a bit, it was no cure for me. (I have been reading here though that timing makes a big difference)
When I started to experience anxiousness on the pyroluric treatment, I started to take a much higher dose of niacin (2500mg in 3 doses daily) after reading up on it in relation to anxiety. With such higher doses I took the niacinamide form of niacin, because it is easier to get and comes in higher strength. I feel it helped me with the anxiety but not it was nothing to rave about in relation to pois.
Niacin's ability to increase vasodilatation, I found was also able to be achieved with chilli peppers, which I mentioned in an old post. I have used hot chilli sauce mixed in water (VERY hot variety) in past the morning after to help reduce pois symptoms. It upsets by stomach if I take it regularly and is part of the 'Nightshade' family which I have intolerance to, but I really recommend it along with a cold shower to help brain fog the next few days.

As regards Niacin & serotonin, I am currently taking trytophan. Since the pyroluric treatment, kicked in I am having trouble getting a decent nights sleep so I started with that. It helps a bit with sleep but cant say it reduces pois symptoms to any great degree for me and that should be boosting my serotonin levels.
Like you, reducing Os to one a week definitely helps. If you are in a relationship this is hard, especially if the woman is sexy and has a good libido. Wanting to cut back on sex really damaged my last two relationships.

Also chlorella helps me. I have always had stomach/bowel troubles (started same time as pois). The brand that was the best for me is no longer on the market, and all the other brands are not as potent and are mixed with spearmint which I hate. I take the suisse brand now, but I just don't get the boost I used to. In relation to the stomach/bowel aspect to pois, I have for many years taken a product called Blooms Herb-a-lax, once every 2 weeks on and off over periods when I felt rotten, and I would have a boost in health for the next week afterwards, greatly reduced pois for any O within the next 3 days. Having had fecal tests at Melb Uni Bio21 institute that showed high levels of a number of undesirable bacteria, I am sure this is the reason why it helps. I don't think this issue causes pois, but the toxic load aggravates the tiredness, brain fog & nuero symptoms. Something others here who have bowel/digestive problems might want to give a go, though its not a solution just a remedy. Resolving the 'undesirable bacteria' issue has was not so straight forward unfortunately, and I am about to push a follow up program with a new doctor on this in a month.

[acronym]

That's interesting as the ZMA supplement is supposed to boost testosterone levels and I find that other activities that are supposed to boost testosterone production, such as lifting weights, also reduce the symptoms. It always struck me as odd as boosting testosterone makes me more inclined to want to have an O but then seems to reduce the effects of one. But what worried me about that was adrenal fatigue. Eventually, the aggressive exercise regime made me feel burnt out.

Have you ever had tests for vitamin and mineral deficiencies. Hair analysis for example?

I also recommnd Zinc as well, and it is one of my primary supplements. I was taking a liquid ionic form, but now take it (high mg) in a powder as part of the pyroluria treatment. I remember when I first got pois in my teens I had white spots all over my fingernails and this is uspposed to be a sign of zinc deficiency. I do weight lifting and am on TRT too and both are a double edged sword so to speak.
Pushing myself at the gym definitely leads to adrenal fatigue. My stress levels go through the roof, until I back off. I take herbs like licorice, ginseng, schizandra, rhodiola + high dose multi-B, Vit-C, vit-E + protein powder. Early on when starting a gym program my health improves + my libdio also improves, but as the weeks progress and I push myself (lift to failure) so I can bulk up, both decline.

As for TRT, it also has variable effects on my libdio. When I increase the dose, my libido jumps up and I do have a better sense of wellbeing, but then I have period after that where my libido slumps, maybe as my testes shut down my own production and it has flow on effects with other hormones. Just pumping in more T does not make my libido suddenly spring back. Its a delicate balance of many factors.
Higher libido definitely gives me a better sense of wellbeing, but it also makes it harder to cut back on the Os. which compounds this see saw effect. I take injectable T which I split into weekly shots. I tried transdermal T, but I did not feel the same benefit, and had higher hair loss.

[acronym]

I just spoke on the phone with the center at Harvard.

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So I am going to ask one last time, just in case, do any of your relatives, for those who have POIS, have or had Alzheimer's? If you dont know for sure, please check and post here if so. After a few days I will compose the email and send it out.

No history of Alzheimers in my family thank goodness. I do worry about this though, given how I used to be a very bright student before pois/cfs and how I struggle now in my early 40s. A previous doctor given my medical profile said I was a candidate for dementia, which was depressing.

[badgerstripe]

Hey guys, nocturnal emissions are something we all struggle with, mostly because we cannot prepare for them. Does anyone know of an optimum supplement combination to take?

I've only once had a NE (when i was 17). I've tried to abstain from sex for periods of time but my temper gets very short. I once did a six month celibacy period and didnt get a NE then, although i was expecting one.

[daveman]

I don't have NEs but I could make the following suggestion:

NEs begin about 4 days after the last orgasm, for each one this may be a little different. Try to determine for yourself when you are becoming more sensitive. NEs usually also come in the later hours of the night, from4 AM and on.

So on the 4th night after your last orgasm, set an alarm at 4AM and take 100mg niacin. Waking up for a short period like that might also make the NE more likely, and besides niacin is a sort of dream stimulator. But don't worry, the niacin will "protect you". If you have an O, the niacin will keep the symptoms at a minimum, in many cases even prevent them.

If you don't have an NE that night, do the same every night until the NE comes. Once the NE comes you can stop taking niacin at night for about 4 days.

It sounds like a hassle, but it would be worth doing to give yourself a break. It's hard enough to avoid voluntary "O"s enough to find some peace, until along comes an NE to make it all come crashing down.

[kurtosis]

Also chlorella helps me. I have always had stomach/bowel troubles (started same time as pois). The brand that was the best for me is no longer on the market, and all the other brands are not as potent and are mixed with spearmint which I hate. I take the suisse brand now, but I just don't get the boost I used to. In relation to the stomach/bowel aspect to pois, I have for many years taken a product called Blooms Herb-a-lax, once every 2 weeks on and off over periods when I felt rotten, and I would have a boost in health for the next week afterwards, greatly reduced pois for any O within the next 3 days. Having had fecal tests at Melb Uni Bio21 institute that showed high levels of a number of undesirable bacteria, I am sure this is the reason why it helps. I don't think this issue causes pois, but the toxic load aggravates the tiredness, brain fog & nuero symptoms. Something others here who have bowel/digestive problems might want to give a go, though its not a solution just a remedy. Resolving the 'undesirable bacteria' issue has was not so straight forward unfortunately, and I am about to push a follow up program with a new doctor on this in a month.

I use synergy. I can't stand spearmint and it actually upsets my stomach even though others suggest it improves their digestion. I find that ZMA improves my sleep. It's interesting that pyroluric supplementation seems to worsen yours.
I think it was jferr who posted about tests to find stomach bacteria which showed high helicobacter pylori levels. I've had persistent digestion issues over the years and "sluggish" BM's. I've found spirulina and chlorella help with that but the 2 are related. I didn't have any of the digestive discomfort and bowel problems I have before the age of about 15. I don't remember any POIS symptoms before then either. The 2 things coincide but, as I said before, I also had that gastric poisoning thing and all bets are off as to what problems that created. I don't remember any POIS symtpoms before then.

[Vincent M]

I read about this herb called Tripterygium wilfordii that apparently has been found to relieve symptoms of rheumatoid arthritis by suppressing the immune system, but I looked for it on amazon and on vitacost and can't find it. Does anyone know a site that might have it in stock?

[daveman]

Hi demografx

I sorted through most of the messages on the link to the other fourm and just wanted to clarify something as there was a lot to sort though...
When the  funding goal is reached will it be directed towards cause or cure or is that still to be decided along the way? Not that the former excludes the latter of course. A precis of the situation would be good to encourage donations.

Badgerstripe,

Very good question!

The whole research process, not only at NORD but throughout the medical industry, goes through several stages. In our case, we are at the very first stage. POIS is new and for the most part little  known, so this first phase, the seed phase, is required to establish POIS as something real!

Although to us $33,500 sounds like a LOT of money, in terms of research, it's peanuts. Normally it wouldn't be enough to do hardly anything, but thanks to NORD, with their whole infrastructure built to manage rare disorders, they are in a position to get the best for the money, where administration costs and management boards of the highest level are shared between all of the projects at all levels.

Research is very complex, and must follow a very strict protocol. Controlling a project must be done within the strictest of ethics and must guarantee, true and real dedication to the actual cause. This seems logical, but very often research projects with lesser ethics and guidelines may try to cut corners and dedicate potentially to parallel anomalies of a condition because it better suits the investigator's needs.

So one of the greatest restrictions in working with NORD is that the MAC, a highly experienced board of medical researchers creates the research project and makes the final selection of investigators based on what they see as the best solution to the cause. We cannot specify preferences or even what we feel to be the best approaches. THEY are the experienced ones in doing medical research, and know what is best for the cause.

The curricula  of the members of the MAC are extraordinary.

At the seed level, it will probably be necesary to establish as a minimum "what is POIS". If nothing else is found, and I feel that we will see much more than that, the answer to this question will very valuable to us. In this moment, we don't know what it is. We fight even between ourselves because of this. We can be lead off far too easily into some dead end street because of this.

POIS symptoms parallel many other maladies, and at least two times a month we have new members saying, "because of our symptoms maybe we have so-and-so and not POIS". We desperately need the answer to the question, "what is POIS". Without knowing what it is, we won't know the cause, without knowing the cause, we won't know the cure.

BUT, there's nothing that says that finding "what it is" won't directly lead us to what causes it and maybe what even cures it.

We are the only POIS group in the world raising funds for research. We are a BIG group of POIS sufferers and have more potential for gathering information and knowledge about POIS than anyone else in the world. NO researcher, not one in the world, has as much access to information on POIS as we do. Not one of them has a collective feel for POIS as we do, we just don't know how to put it all in real and researched medical perspective.

So what we want to do, is involve our group in the provision of solid information about POIS. We can't sway or influence them, nor do we wish to. None of us would want to take the responsibility of directing a serious investigation down a mistaken path based on only a gut feeling. But what we can do is show them more information than they may have access to, tell them how POIS feels, how and when it shows it's ugly face, basically give them a very good starting base.

As we've seen, no POIS researcher knew about niacin before us. Most still don't, and those that do have found out from us. We can't tell them that niacin is the solution, but we can make them aware of it and how it seems to work. they can take it from there.

In this way, we hope to cut years off of the investigation.

We will be puting together a format for the recompilation of this information. The more thorough and professional it is the better. It would need medical back up, reliable internet sources, perhaps blood test and controls. We will look for a format that is common in the medical industry and open threads on SMF to produce these "reports". A true investigation cannot overlook this kind of information during it's formative phases.

So to make a story short. We don't know exactly the form the investigation will take, except that the best approach will be taken. We can inform and provide input, I think this will be of tremendous value in our case to give the investigation the best kickstart possible.

[Hoping]

I just spoke on the phone with the center at Harvard.

http://alzheimersweekly.com/content/alzheimers-disease-research-center-harvard-medical-school [nofollow]

They want me to put together an email describing the correlation between POIS, relatives who have Alzheimers, and the similarity in mental symptoms one gets from POIS to the symptoms one gets from Alzheimers.

This is who I am to send the email to:

http://madrc.mgh.harvard.edu/liang-yap-phd [nofollow]


So I am going to ask one last time, just in case, do any of your relatives, for those who have POIS, have or had Alzheimer's? If you dont know for sure, please check and post here if so. After a few days I will compose the email and send it out.

My great grandma (on my dad's side) had Alzheimers

[jferr]

I tend to try and stay active in the gym and such. After activity like basketball I usually feel weak and shake, Jittery.. Feels like it could be hypoglycemia type symptoms but I'm not sure. Does anyone else feel this and what can be done about it?

Thanks all.

Jon.

[badgerstripe]

Hi demografx

I sorted through most of the messages on the link to the other fourm and just wanted to clarify something as there was a lot to sort though...
When the  funding goal is reached will it be directed towards cause or cure or is that still to be decided along the way? Not that the former excludes the latter of course. A precis of the situation would be good to encourage donations.

Badgerstripe,

Very good question!

The whole research process, not only at NORD but throughout the medical industry, goes through several stages. In our case, we are at the very first stage. POIS is new and for the most part little  known, so this first phase, the seed phase, is required to establish POIS as something real!

Although to us $33,500 sounds like a LOT of money, in terms of research, it's peanuts. Normally it wouldn't be enough to do hardly anything, but thanks to NORD, with their whole infrastructure built to manage rare disorders, they are in a position to get the best for the money, where administration costs and management boards of the highest level are shared between all of the projects at all levels.

Research is very complex, and must follow a very strict protocol. Controlling a project must be done within the strictest of ethics and must guarantee, true and real dedication to the actual cause. This seems logical, but very often research projects with lesser ethics and guidelines may try to cut corners and dedicate potentially to parallel anomalies of a condition because it better suits the investigator's needs.

So one of the greatest restrictions in working with NORD is that the MAC, a highly experienced board of medical researchers creates the research project and makes the final selection of investigators based on what they see as the best solution to the cause. We cannot specify preferences or even what we feel to be the best approaches. THEY are the experienced ones in doing medical research, and know what is best for the cause.

The curricula  of the members of the MAC are extraordinary.

At the seed level, it will probably be necesary to establish as a minimum "what is POIS". If nothing else is found, and I feel that we will see much more than that, the answer to this question will very valuable to us. In this moment, we don't know what it is. We fight even between ourselves because of this. We can be lead off far too easily into some dead end street because of this.

POIS symptoms parallel many other maladies, and at least two times a month we have new members saying, "because of our symptoms maybe we have so-and-so and not POIS". We desperately need the answer to the question, "what is POIS". Without knowing what it is, we won't know the cause, without knowing the cause, we won't know the cure.

BUT, there's nothing that says that finding "what it is" won't directly lead us to what causes it and maybe what even cures it.

We are the only POIS group in the world raising funds for research. We are a BIG group of POIS sufferers and have more potential for gathering information and knowledge about POIS than anyone else in the world. NO researcher, not one in the world, has as much access to information on POIS as we do. Not one of them has a collective feel for POIS as we do, we just don't know how to put it all in real and researched medical perspective.

So what we want to do, is involve our group in the provision of solid information about POIS. We can't sway or influence them, nor do we wish to. None of us would want to take the responsibility of directing a serious investigation down a mistaken path based on only a gut feeling. But what we can do is show them more information than they may have access to, tell them how POIS feels, how and when it shows it's ugly face, basically give them a very good starting base.

As we've seen, no POIS researcher knew about niacin before us. Most still don't, and those that do have found out from us. We can't tell them that niacin is the solution, but we can make them aware of it and how it seems to work. they can take it from there.

In this way, we hope to cut years off of the investigation.

We will be puting together a format for the recompilation of this information. The more thorough and professional it is the better. It would need medical back up, reliable internet sources, perhaps blood test and controls. We will look for a format that is common in the medical industry and open threads on SMF to produce these "reports". A true investigation cannot overlook this kind of information during it's formative phases.

So to make a story short. We don't know exactly the form the investigation will take, except that the best approach will be taken. We can inform and provide input, I think this will be of tremendous value in our case to give the investigation the best kickstart possible.

Thanks Daveman

That was the kind of update and summary i was looking for and makes me much more comfortable about donating (though it won't be this month, maybe in a month or so!)

My understanding of what you say is that *the end goal of the research IS to find a solution to POIS* but there are steps along the way, the first of which is to establish scientifically that the condition really exists. Is that right?

I have looked at the NORD website and it seems like a really solid scientific and ethical organisation. I agree that our forum  can't steer the investigation but i hope, as you say, that they look closely at our experiences of POIS and remedies to get to solutions more quickly than without our experiences.

I am still experimenting with the Niacin and results are mixed, i will post some more of my experimenting when i have a few more Os under it's influence.

[Quasar]

I tend to try and stay active in the gym and such. After activity like basketball I usually feel weak and shake, Jittery.. Feels like it could be hypoglycemia type symptoms but I'm not sure. Does anyone else feel this and what can be done about it?

Thanks all.

Jon.

Nope. In fact, it is the contrary with me. Sports are one of the very few activities that improve my condition. After having played a basketball match i feel SO good! At the beginning of the sport activity i can feel i'm not 100% because of the Pois symptoms, but after a few minutes of getting the blood flowing i feel great.

About the alzheimer topic, i'm sorry but nobody in my family has ever had alzheimer or memory issues. In fact, i have a very good memory, specially long-term memory. My family has no history of any mental diseases, or any type on disease in particular. I guess i'm the member with the worst health issues in my family.

[Willem]

I tend to try and stay active in the gym and such. After activity like basketball I usually feel weak and shake, Jittery.. Feels like it could be hypoglycemia type symptoms but I'm not sure. Does anyone else feel this and what can be done about it?

Thanks all.

Jon.

That's interesting.  I feel the same way when I play basketball in the morning and haven't eaten.  If I play at 7AM and don't get food by 9AM I start shaking and get the chills.  So it's a type of hypoglycemic response.  I impose a three game limit on myself.  If I play a fourth game it's like I'm running on low glucose and I get much sorer.  I also drink Gatorade which helps...

[daveman]

Thanks Daveman

That was the kind of update and summary i was looking for and makes me much more comfortable about donating (though it won't be this month, maybe in a month or so!)

My understanding of what you say is that *the end goal of the research IS to find a solution to POIS* but there are steps along the way, the first of which is to establish scientifically that the condition really exists. Is that right?

I have looked at the NORD website and it seems like a really solid scientific and ethical organisation. I agree that our forum  can't steer the investigation but i hope, as you say, that they look closely at our experiences of POIS and remedies to get to solutions more quickly than without our experiences.

I am still experimenting with the Niacin and results are mixed, i will post some more of my experimenting when i have a few more Os under it's influence.

Yes for sure, the end goal is to find a solution, and we will!

As far as us establishing scientifically that the condition exists, really more important is to have a specific medical definition of WHAT it is.

But I'm certain that if we put together as a group written support in a series of reports that summarize the strongest body of
information which we have gathered here on these forums, we can advance the status of the investigation and set it on a truer initial path.

As I said, there are maybe 6 principal investigators of POIS in the world. Maybe a few others in the woodwork who haven't shown their faces yet. But among those, still the information easily lacks several things that only we can share. We are a huge base of POIS specific information.

All of the researchers together have studied, albeit in detail, less individual cases than our total here. The NORD MAC also will benefit greatly to have our information in order to be able to make a more specifically directed program and educated revision of the grant prospects. I don't mean to say at all that the NORD MAC doesn't have a clue, just that POIS is not well known or understood and nobody has as much information as we do.

Withing the next couple of weeks we will set up the infrastructure to begin generating the reports for NORD. These reports will summarize our test results, theories and collect medical backup for them. We don't propose to find the solution ourselves, or we wouldn't be creating a research program.

With our input, the grant program will help assure that POIS has a real definition. It's my guess that the definition will point strongly to a cause and cure.

We as a group, have shown that even when partly directed in a specific direction we can do wonders. With a real definition and majority concordance, we'll be well on our way.

[B_Daniel]

Question - Has anyone entered "Advanced POIS" (POIS that no longer goes away at day 4+) and gotten OUT of it?  How?!?  Constant pois is awful.

I have a new theory that my Advanced POIS is caused by miniature NE's every night.  I've never found evidence of a NE, but I feel by far the worst in the mornings, indicating that something might be going on while sleeping.  I'm going to try to wake up midway through the night and pop some Niacin. as Dave suggested.

[mellivora]

Hi demografx

I sorted through most of the messages on the link to the other fourm and just wanted to clarify something as there was a lot to sort though...
When the  funding goal is reached will it be directed towards cause or cure or is that still to be decided along the way? Not that the former excludes the latter of course. A precis of the situation would be good to encourage donations.

Badgerstripe,

Very good question!

The whole research process, not only at NORD but throughout the medical industry, goes through several stages. In our case, we are at the very first stage. POIS is new and for the most part little  known, so this first phase, the seed phase, is required to establish POIS as something real!

Although to us $33,500 sounds like a LOT of money, in terms of research, it's peanuts. Normally it wouldn't be enough to do hardly anything, but thanks to NORD, with their whole infrastructure built to manage rare disorders, they are in a position to get the best for the money, where administration costs and management boards of the highest level are shared between all of the projects at all levels.

Research is very complex, and must follow a very strict protocol. Controlling a project must be done within the strictest of ethics and must guarantee, true and real dedication to the actual cause. This seems logical, but very often research projects with lesser ethics and guidelines may try to cut corners and dedicate potentially to parallel anomalies of a condition because it better suits the investigator's needs.

So one of the greatest restrictions in working with NORD is that the MAC, a highly experienced board of medical researchers creates the research project and makes the final selection of investigators based on what they see as the best solution to the cause. We cannot specify preferences or even what we feel to be the best approaches. THEY are the experienced ones in doing medical research, and know what is best for the cause.

The curricula  of the members of the MAC are extraordinary.

At the seed level, it will probably be necesary to establish as a minimum "what is POIS". If nothing else is found, and I feel that we will see much more than that, the answer to this question will very valuable to us. In this moment, we don't know what it is. We fight even between ourselves because of this. We can be lead off far too easily into some dead end street because of this.

POIS symptoms parallel many other maladies, and at least two times a month we have new members saying, "because of our symptoms maybe we have so-and-so and not POIS". We desperately need the answer to the question, "what is POIS". Without knowing what it is, we won't know the cause, without knowing the cause, we won't know the cure.

BUT, there's nothing that says that finding "what it is" won't directly lead us to what causes it and maybe what even cures it.

We are the only POIS group in the world raising funds for research. We are a BIG group of POIS sufferers and have more potential for gathering information and knowledge about POIS than anyone else in the world. NO researcher, not one in the world, has as much access to information on POIS as we do. Not one of them has a collective feel for POIS as we do, we just don't know how to put it all in real and researched medical perspective.

So what we want to do, is involve our group in the provision of solid information about POIS. We can't sway or influence them, nor do we wish to. None of us would want to take the responsibility of directing a serious investigation down a mistaken path based on only a gut feeling. But what we can do is show them more information than they may have access to, tell them how POIS feels, how and when it shows it's ugly face, basically give them a very good starting base.

As we've seen, no POIS researcher knew about niacin before us. Most still don't, and those that do have found out from us. We can't tell them that niacin is the solution, but we can make them aware of it and how it seems to work. they can take it from there.

In this way, we hope to cut years off of the investigation.

We will be puting together a format for the recompilation of this information. The more thorough and professional it is the better. It would need medical back up, reliable internet sources, perhaps blood test and controls. We will look for a format that is common in the medical industry and open threads on SMF to produce these "reports". A true investigation cannot overlook this kind of information during it's formative phases.

So to make a story short. We don't know exactly the form the investigation will take, except that the best approach will be taken. We can inform and provide input, I think this will be of tremendous value in our case to give the investigation the best kickstart possible.

Thanks Daveman

That was the kind of update and summary i was looking for and makes me much more comfortable about donating (though it won't be this month, maybe in a month or so!)

My understanding of what you say is that *the end goal of the research IS to find a solution to POIS* but there are steps along the way, the first of which is to establish scientifically that the condition really exists. Is that right?

I have looked at the NORD website and it seems like a really solid scientific and ethical organisation. I agree that our forum  can't steer the investigation but i hope, as you say, that they look closely at our experiences of POIS and remedies to get to solutions more quickly than without our experiences.

I am still experimenting with the Niacin and results are mixed, i will post some more of my experimenting when i have a few more Os under it's influence.

Really nice description of the process Daveman

Badgerstripe, I'm glad you are thinking of donating. Don't forget you can make a pledge (promise to donate) now and cough up the cash later. As I understand it, the deadline for getting a NORD research grant this year is March (funds will still go towards a grant next year if we don't make one this year). By making a pledge now, you can make it known how much you can contribute and help us know how close we are to our target. When the pledged amount reaches our target, we all hand over our promised donations and away we go...Of course if you do want to make an actual donation direct to the NORD fund now that's even better. We have had some big pledges. I hope this doesn't stop anyone who can only afford a very small donation from coming forward through feeling their contribution would seem inadequate. Any and every contribution adds to the total and is much appreciated whether its $5 or $10000

[Mer]

Hi everyone!

Yesterday I bought a bottle of Niacin 500 mg capsules. On the bottle it says NO FLUSH. I am wondering if this also works for you guys? Does the FLUSHING one works better than NO FLUSH one for you?

Please let me know.


Thank you!

[jferr]

Question - Has anyone entered "Advanced POIS" (POIS that no longer goes away at day 4+) and gotten OUT of it?  How?!?  Constant pois is awful.

I have a new theory that my Advanced POIS is caused by miniature NE's every night.  I've never found evidence of a NE, but I feel by far the worst in the mornings, indicating that something might be going on while sleeping.  I'm going to try to wake up midway through the night and pop some Niacin. as Dave suggested.

B_Daniel,

Yes, My POIS is constant. It does not go away and NE's only hurt it further. You are nit alone.

[kurtosis]

I tend to try and stay active in the gym and such. After activity like basketball I usually feel weak and shake, Jittery.. Feels like it could be hypoglycemia type symptoms but I'm not sure. Does anyone else feel this and what can be done about it?

Thanks all.

Jon.

Nope. In fact, it is the contrary with me. Sports are one of the very few activities that improve my condition. After having played a basketball match i feel SO good! At the beginning of the sport activity i can feel i'm not 100% because of the Pois symptoms, but after a few minutes of getting the blood flowing i feel great.

About the alzheimer topic, i'm sorry but nobody in my family has ever had alzheimer or memory issues. In fact, i have a very good memory, specially long-term memory. My family has no history of any mental diseases, or any type on disease in particular. I guess i'm the member with the worst health issues in my family.

Exercise such as lifting weights and playing soccer tends to give me a boost and helps me recover from POIS.

[kurtosis]

Hi everyone!

Yesterday I bought a bottle of Niacin 500 mg capsules. On the bottle it says NO FLUSH. I am wondering if this also works for you guys? Does the FLUSHING one works better than NO FLUSH one for you?

Please let me know.


Thank you!

Flush works best for me. Also discourages me from taking too much by giving me a nice obvious feedback within about 10 minutes of taking it.

[badgerstripe]

I tend to try and stay active in the gym and such. After activity like basketball I usually feel weak and shake, Jittery.. Feels like it could be hypoglycemia type symptoms but I'm not sure. Does anyone else feel this and what can be done about it?

Thanks all.

Jon.

Hi

i get hypoglycaemic at times and get that jittery feling. I've never seen a relationship with POIS and think its something separate. The way i avoid it is to eat a lot of complex carbs like brown rice and root vegetables and avoid too much of the quick burn carbs like potatoes. I avoid too much simple sugar apart from maybe eating an apple or a banana not long before any strenuous exercise like swimming or surfing.

 I find moderate exercise helps my POIS as well, like I'm slowly re-charging a battery - the hard part is *starting* when i'm in POIS! I ALWAYS feel better after a swim on my POIS days, the cold water seems to help that unpleasant warmth and numbness and get the blood moving.

[daveman]

Hi everyone!

Yesterday I bought a bottle of Niacin 500 mg capsules. On the bottle it says NO FLUSH. I am wondering if this also works for you guys? Does the FLUSHING one works better than NO FLUSH one for you?

Please let me know.


Thank you!

Flush works best for me. Also discourages me from taking too much by giving me a nice obvious feedback within about 10 minutes of taking it.

Guthrie has had success with the no flush niacinamide, although he takes about 1000mg. As Kurtosis says the flush is a great guideline that you have taken enough. Several times I have gotten close to the flsuh, but not quite reached it, and still have had effective POIS relief. But achieving the flush is a guarantee.

I personally don't find the flush a big problem, although I guess you can't really be in public with a beet red face.

I guess the problem with the n

[daveman]

Really nice description of the process Daveman

Badgerstripe, I'm glad you are thinking of donating. Don't forget you can make a pledge (promise to donate) now and cough up the cash later. As I understand it, the deadline for getting a NORD research grant this year is March (funds will still go towards a grant next year if we don't make one this year). By making a pledge now, you can make it known how much you can contribute and help us know how close we are to our target. When the pledged amount reaches our target, we all hand over our promised donations and away we go...Of course if you do want to make an actual donation direct to the NORD fund now that's even better. We have had some big pledges. I hope this doesn't stop anyone who can only afford a very small donation from coming forward through feeling their contribution would seem inadequate. Any and every contribution adds to the total and is much appreciated whether its $5 or $10000

For personal reasons I haven't had the time I'd like to have, but I'm getting fired up again.

I'm presently working on a more formal online "Pledges Database Manager". We will be able to add/edit our pledges and see those of the others. Of course it will show totals and pledge dates. One can pledge on the condition of "meeting the minimum", or just making a pledge, single pledges or periodic.

It will send out automatic reminder of payment when dates or pledge criteria have been met.

A pledge status for each member will also be shown.

The main idea of the pledge manager is to show our commitment, to show if we CAN or not. We will be able to feel more confident in having the backing of the rest of the group.

We will be striving to make the pledges REAL. This of course if best for all.