Post Orgasmic Illness Syndrome (POIS)

  • 20075 Replies
  • 6559913 Views

0 Members and 6 Guests are viewing this topic.

*

Offline badgerstripe

  • Jr. Member
  • **
  • 49
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16700 on: 06/06/2012 09:09:23 »
We need a brain Functional MRI  before, while exciting with an O, and during POIS to understand what is wrong with the brain functions.

The past stuctural brain MRI only could show " the pituitary adenoma" some POIS patients got, but nothing more.

When Dr Goldmeier told me I should practice meditation last august, I thought it was a joke...But he made me done the Own semen allergic tests and it was positive (2 cm).
Since, I started a desensibilization but it is hard to know if it helps because I am in Chronical Fatigue state!

oops, that previous empty post was a mistake.

I agree that brain MRI and blood tests before, during and after O would be necessary to detect what is really going on with the brain in relation to POIS. Since i have had just one appointment with Dr Goldmeier I didnt really expect all that quite yet. He has referred me to an allergist which seems to me to be the next step.

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8199
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16701 on: 06/06/2012 09:30:30 »
The Rutgers Brain (f)MRI people have not followed up. I will check back with them. I just now sent an email to Dr Barry Komisaruk, who has conducted brain fMRI's on women's orgasms (study posted here earlier).
« Last Edit: 06/06/2012 09:38:51 by demografx »

*

Offline badgerstripe

  • Jr. Member
  • **
  • 49
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16702 on: 06/06/2012 09:56:30 »
Badgerstripe,

The blood tests that Dr. Goldmeier ordered are very basic tests.  So, it isn't surprising that nothing showed up that could potentially point to an immunological problem, a hormonal imbalance, or an inflammatory condition (these are just some examples).

He may be a wonderful psychiatrist -- I have no idea if he is or isn't -- and may even have some worthwhile techniques to offer that could help lower a bit of the stress that POIS induces. But his work-up from a medical standpoint sounds far from complete, especially in a condition as complicated (and, to date, mysterious) as POIS.

Is Dr. Goldmeier a psychiatrist? Does he have any other specialty?

I ask because I'm trying to understand his involvement with POIS and why is he referenced so frequently on this forum.  I've found him on the databases that we use, but could not determine why he's considered by some of the forum members as a POIS expert.  This is not to cast any aspersions -- I really don't know his background.  Input would be appreciated!

(The fact that his office lost your first set of blood tests is not a good sign, just FYI.)

I wish you the best of luck with the allergist that you'll be seeing.  However, keep in mind that POIS might not be an allergy (it might be, but nobody knows yet!).

It's all very frustrating, and I can only imagine what it's like to try to go through a POIS workup without any basic, scientific research having been undertaken.

Best wishes to you!

Stef   




Thanks Stef for your feedback, Dave and Demo and all others who have commented on my post.

Lots to say and not sure i can cover it all!

I went to Dr Goldmeier because several people recommended him on this forum and he happens to operate 2 miles from my house..and being on the NHS its free...!

Firstly, if I thought Dr Goldmeier was saying that POIS was purely psychosomatic or just "in my head" I would have been out of there quite quickly believe me! I have had previous experience of that with food allergies and a childhood physical defect that was not discovered until i was 7, involving extreme pain, so that attitude is guaranteed to anger me.


I didnt get that impression from him however, rather that he owned the fact that no-one really knew what causes POIS and that it may have more than one cause, maybe different for different people. His professional background is
as a clinical lead in a Uk. National Health Service Sexual Health Function clinic, see:
http://www1.imperial.ac.uk/medicine/people/d.goldmeier/ [nofollow]
He does not seem to be a psychiatrist and other papers he has written seem to have a strong biochemical content.

In this initial appointment I didnt really expect more than the basic blood tests to be done, i hope there will be more. As this is a large NHS clinic I dont think its a reflection of him personally that the first lot of blood samples got lost.

It seems fairly obvious to me that the overwhelming nature of the mental "low" and brain fog of the first day or so of POIS has a brain chemistry cause so I am willing to try options like mindfulness to tackle this, it has had some positive effect on my anxiety and the depressed feeling of POIS but at the moment it is minimal, partly because i am not practicing it very avidly.

To determine what is really going on I believe brain MRI scans before, during and after O plus blood tests for hormone levels would need to be conducted plus more investigation into the physical aspects of POIS. At this stage I appreciate that on the NHS this not all going to happen immediately, it also seems logical that an experimental approach would be helpful. Therefore it seemed appropriate when Dr G and I discussed it that I should try 8 weeks or so of mindfulness before an appointmnt with an allergist became available with the option of trying a strong antihistamine after that.

So that's where i am.. open minded yet with i think a healthy scepticism of the medical profession where there can sometimes be an over adherence to established medical dogma or pet theories.

it's all very complicated!!! I wish myself and all of us good luck in navigating POIS and discovering its cure.

*

Offline Porke

  • Jr. Member
  • **
  • 25
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16703 on: 06/06/2012 12:07:32 »
Hey guys,

Its been a while since I've posted.

I recently watched this TED talk on pornography and the effect it has on the brain

newbielink:http://www.youtube.com/watch?v=wSF82AwSDiU&feature=youtu.be [nonactive]

Dopamine is mentioned several times, and its a neuro transmitter we have discussed quite often in this forum (eluding to the fact that dopamine might play a part in POIS).

Admittedly, I do have quite a long history of watching porn (normal for most guys i guess). The points raised do make sense to me. The presenter says that watching online pornography has a reward seeking effect, and doing this repeatedly over many years has adverse affects on the brain - just like an alcoholic or drug user.  Our primitive brains aren't wired for it.

There is even a reddit group called 'No Fap 90 days' - a bunch of guys trying to stop watching online pornography.

Its all very interesting, and I think that if it has such a big affect on people, POIS could also fit in in some way.

Because I'm so desperate for a lifestyle change, I reckon im going to give it a go and delete all pr0n off my PC, and not watch it at all for a few months and see what happens. My brain might just rewire itself...

*

Offline nathan123

  • Sr. Member
  • ****
  • 106
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16704 on: 06/06/2012 16:04:15 »
Hi Friends,

Today I consulted new GP.  I explained all my symptoms. He inquired my health history from my childhood.  I explained all.

He suspect one of medicines  / treatment taken by me might resulted in POIS.  It is I have taken 4 months Homeopathic medicine for asthama just before 8 months from my POIS started.  As per his understanding, the homeopathic medicine for asthama deals with Immune system. He asked me to enquire in this forum, about any of you has taken Homeopahtic medicine before your POIS started.  So, Please give your feedback on this.     


*

Offline Habibou

  • Sr. Member
  • ****
  • 196
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16705 on: 06/06/2012 17:51:46 »
Yes Nathan !  I took "staphysagria" 3 months before my POIS started one day after an O randomly...

*

Offline Vasian1980

  • Jr. Member
  • **
  • 13
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16706 on: 06/06/2012 17:52:53 »
I took up the first attack Psorinoheel
« Last Edit: 06/06/2012 17:54:54 by Vasian1980 »

*

Offline daveman

  • Neilep Level Member
  • ******
  • 1002
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16707 on: 06/06/2012 19:55:07 »
Hey guys,

Its been a while since I've posted.

I recently watched this TED talk on pornography and the effect it has on the brain

http://www.youtube.com/watch?v=wSF82AwSDiU&feature=youtu.be

Dopamine is mentioned several times, and its a neuro transmitter we have discussed quite often in this forum (eluding to the fact that dopamine might play a part in POIS).

Admittedly, I do have quite a long history of watching porn (normal for most guys i guess). The points raised do make sense to me. The presenter says that watching online pornography has a reward seeking effect, and doing this repeatedly over many years has adverse affects on the brain - just like an alcoholic or drug user.  Our primitive brains aren't wired for it.

There is even a reddit group called 'No Fap 90 days' - a bunch of guys trying to stop watching online pornography.

Its all very interesting, and I think that if it has such a big affect on people, POIS could also fit in in some way.

Because I'm so desperate for a lifestyle change, I reckon im going to give it a go and delete all pr0n off my PC, and not watch it at all for a few months and see what happens. My brain might just rewire itself...

Good Luck!

Man do we need research!
How does Murphey do it??

*

Offline daveman

  • Neilep Level Member
  • ******
  • 1002
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16708 on: 06/06/2012 19:56:37 »
Badgerstripe,
I have had a lot of experience with mindfulness and meditation. Not as practiced now as I used to be, it's sort of like sports in that way, but with more than 5 or 6 years of intense study and practice, something stays with you.

There was a time when I believed that meditation could help cure anything. It gives you highly focused access to normally subconscious aspects of your mind. You can feel things happing inside of you, that can actually be verified physically, and as such you also have access to methods to change them.

Alas, there are just some things that you cannot modify, like altered or damaged brain circuitry whether external or hereditary for instance. I have seen depressive people on meditation programs seemingly get better, but short times after stopping their medicines they are back down in the  grunge again.

Do their mindfulness if you wish. The only way to understand. It may lighten the load for a little while.

But is it a lifestyle, to battle an uphill battle against a physical ailment? My impression is that one can drive themselves to the same level of stress by trying to ďcure the uncurableĒ with mindfulness, as the original failure of sex to relieve your anxieties is supposedly causing you right now. Whatís more, the practice of ďmindfulnessĒ IS like sports. It doesnít come easy nor have much benefit until you begin to master it.

It drives me crazy to see someone dedicate, months, following a lead like this, just to realizeÖÖ. That he has POIS.
How does Murphey do it??

*

Offline Balourd

  • First timers
  • *
  • 2
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16709 on: 06/06/2012 22:22:49 »
Hello again.. I dont know what i have exactly but i followed some advices . I used to masturbate more than 5 times per day. Now i dont .Only sex  2-3 times per week trying not to prolong orgasm. I take B complex daily,and niacin sometimes before O and after each orgasm i feel somehow better. I noticed that it took me less to feel better.
I have more energy now , i started doing excersice ,something that was really exhausting and i started to feel  willing to do things again...
I took half pill thyromax as i had high tsh in past  but i think that although it gave me some energy it made me feel nervous maybe i should try again as i felt more desire and happyness excersining.

Concentration was really difficult and imposible sometimes but now it seems stabilized and better. I dont know if i have POIS or sexual exhaustion or whatever.... but maybe i felt better because i quit that habbit of more than 5 ejacuations per day...During the abstinence period i had severe mood swings...

I noticed that  i cant sleep more than 6 hours.. Before i needed 10 . However i had trouble sleeping but the last days it is easier..
Speech  fluency is somehow easier now i feel that brain fog is diminished...
I am going to visit some TCM and homeopathy doctors and have some exams to see if they can help me further.

I didnt have exactly porn addiction as i watched little porn but i was m* while  looking at random hot girls photos (spent hours searching) ,naked or not.

To sum up having been in that bad state for long time, i cant tell if how i feel now is normal. I feel that i am not 100% ok but i dont know.At least i feel better..
Although not cured feeling better and more active is something good...
« Last Edit: 06/06/2012 22:29:12 by Balourd »

*

Offline CertainlyPOIS

  • Hero Member
  • *****
  • 727
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16710 on: 07/06/2012 05:12:23 »
It is ccconfucius just changed my name to CertainlyPois
just some inspiration from demo and forum.

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8199
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16711 on: 07/06/2012 14:53:08 »
CertainlyPOIS, formerly known as CCconfucious, welcome BACK to the POIS thread of The Naked Science Forum!  We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here!
   


Please check your mail inbox from about 3 years ago.
(click on "My Messages" at the top of this page)

Welcome BACK aboard!
daveman and demografx
Your forum moderators

(I'll miss the name "CC")


« Last Edit: 07/06/2012 14:56:56 by demografx »

*

Offline daveman

  • Neilep Level Member
  • ******
  • 1002
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16712 on: 07/06/2012 17:07:30 »
Itís often mentioned that Niacin doesnít work for everyone, and it could well be, BUT I have worked recently with at least 3 people on a one to one basis to help with the use of niacin, and it is a VERY precise process. If itís not done JUST RIGHT, it doesnít work. So Iím certain that many who have tried it and failed have just not applied the ďrulesĒ correctly and given up too soon.

Itís really worth trying to make it work, because when it works itís amazing. I suggest that if you are one of those for which it hasnít worked, that you get in contact with one of us on a one on one to try to see if you canít make it work. I havenít spoken to any of the others yet about this, but Iím sure ObserverCenter for instance would be glad to help out.

If you are one for which it works, perhaps you can volunteer here to receive PMs to help guide someone through. They are just simple things that one might miss or ďdo wrongĒ, but they make all the difference in the world.

It would be a shame to be suffering when it isnít necessary.

Besides, if it is just a procedural thing, then we can move one step closer to understanding the mechanisms. If itís just procedural but we think itís a non-compatibility, then we understand the mechanism improperly. We misunderstand the reason for it not working in some.
How does Murphey do it??

*

Offline victor.kons

  • Sr. Member
  • ****
  • 100
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16713 on: 07/06/2012 18:04:44 »
Itís often mentioned that Niacin doesnít work for everyone, and it could well be, BUT I have worked recently with at least 3 people on a one to one basis to help with the use of niacin, and it is a VERY precise process. If itís not done JUST RIGHT, it doesnít work. So Iím certain that many who have tried it and failed have just not applied the ďrulesĒ correctly and given up too soon.

Itís really worth trying to make it work, because when it works itís amazing. I suggest that if you are one of those for which it hasnít worked, that you get in contact with one of us on a one on one to try to see if you canít make it work. I havenít spoken to any of the others yet about this, but Iím sure ObserverCenter for instance would be glad to help out.

If you are one for which it works, perhaps you can volunteer here to receive PMs to help guide someone through. They are just simple things that one might miss or ďdo wrongĒ, but they make all the difference in the world.

It would be a shame to be suffering when it isnít necessary.

Besides, if it is just a procedural thing, then we can move one step closer to understanding the mechanisms. If itís just procedural but we think itís a non-compatibility, then we understand the mechanism improperly. We misunderstand the reason for it not working in some.
Yeah, you are right Dave. The procedure should be followed VERY precisely, otherwise it won't work. This was the reason I thought that Niacin injection doesn't help me, when I have tried it very first time. But it helped me when I attempted to try it second time, in a month, because of despair. Also body needs to adapt to Niacin, very first intakes results in discomfort feelings in various areas, like area of stomach, heart or head.

I think there is also a possibility that tablets won't work for some, because of insufficient digestion. Flush effect is a good marker to determine whether Niacin digested good or not so good.

Anyone please feel free to send me a PM if you want a one to one guidance and support in trying Niacin.

Victor
« Last Edit: 07/06/2012 20:07:50 by victor.kons »

*

Offline observercenter

  • Full Member
  • ***
  • 87
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16714 on: 07/06/2012 19:31:33 »
Please check your mail inbox from about 3 years ago.

Lol.

Yep, you could send me too a PM if you want good advice with the niacin. Regards.

*

Offline victor.kons

  • Sr. Member
  • ****
  • 100
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16715 on: 07/06/2012 20:15:32 »
Another thing came up to my mind. Pretty much anyone here complains about very low socialization abilities while in POIS, at the same time math abilities are pretty much okay or even greater and math concentration is better. This must point to the areas of brain affected and not affected by POIS and to the fact that POIS is localized to particular areas of brain.

I remember that I have struggled with POIS in my teens by learning rhymes by heart and this way my POIS symptoms disappeared very very quickly. E.g. I have stimulated areas of brain that are responsible to speech and this helped to clear out POIS symptoms.

Victor

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8199
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16716 on: 07/06/2012 21:15:10 »
Very interesting, Victor.

*

Offline badgerstripe

  • Jr. Member
  • **
  • 49
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16717 on: 07/06/2012 22:01:06 »
Badgerstripe,
I have had a lot of experience with mindfulness and meditation. Not as practiced now as I used to be, it's sort of like sports in that way, but with more than 5 or 6 years of intense study and practice, something stays with you.

There was a time when I believed that meditation could help cure anything. It gives you highly focused access to normally subconscious aspects of your mind. You can feel things happing inside of you, that can actually be verified physically, and as such you also have access to methods to change them.

Alas, there are just some things that you cannot modify, like altered or damaged brain circuitry whether external or hereditary for instance. I have seen depressive people on meditation programs seemingly get better, but short times after stopping their medicines they are back down in the  grunge again.

Do their mindfulness if you wish. The only way to understand. It may lighten the load for a little while.

But is it a lifestyle, to battle an uphill battle against a physical ailment? My impression is that one can drive themselves to the same level of stress by trying to ďcure the uncurableĒ with mindfulness, as the original failure of sex to relieve your anxieties is supposedly causing you right now. Whatís more, the practice of ďmindfulnessĒ IS like sports. It doesnít come easy nor have much benefit until you begin to master it.

It drives me crazy to see someone dedicate, months, following a lead like this, just to realizeÖÖ. That he has POIS.


daveman

i know i have POIS - no doubt about that!

Mindfulness can be useful i think, it already has been, i've done other types of meditation before to good effect.

i really dont think it will cure POIS, it may help me generally, it may help me with POIS.

As i have said before the best results have come from Niacin  when i get the timing and flush right! Even on the days i do have POIS I only seem to be really badly affected for about 2 hours or so after the O for another couple of hours, mostly in depressed mood, muscle weakness and brain fog. Maybe its because i have taken so much Niacin in the last few months, i dont know.




*

Offline Nightingale

  • Full Member
  • ***
  • 92
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16718 on: 07/06/2012 23:30:46 »
It’s often mentioned that Niacin doesn’t work for everyone, and it could well be, BUT I have worked recently with at least 3 people on a one to one basis to help with the use of niacin, and it is a VERY precise process. If it’s not done JUST RIGHT, it doesn’t work. So I’m certain that many who have tried it and failed have just not applied the “rules” correctly and given up too soon.

I have to emphasize this!  I thought niacin did not work for me for 3 months after first trying it, I had given up.  But I tried waiting 40-60 minutes after flushing, and YES IT WORKED!

*

Offline Nightingale

  • Full Member
  • ***
  • 92
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16719 on: 08/06/2012 01:04:18 »
OK I'm posting this to get some brainstorming going on our next major post on Reddit, this time to r/askscience.  The following is written as if it were to be posted there.  That's scary, as there is so much information in this!  But anyways, this has to do with a man's notes about his son's Tourette's Syndrome and vitamin B6.  There is a strong possibilty from my reading that this has something to do with POIS.  The pathophisiology is incredibly complicated, so I hope that those in r/askscience can help us!  Please add to this, come up with more, etc.  Check out the source here: http://poiscenter.com/forums/index.php?topic=197.0 [nofollow]  - (I will probably remove much of this quoted material and just put this link in the Reddit post)

Here goes:

Niacin works.  It seems to work for everyone once they understand the precise procedure they must follow in order to get relief. 

But why does it work?  This does not get immediately explained by the immunologic theory that we have now.  If it's possible that their is another factor involved that can be
manipulted, we want to know.  Now.  This disease is awful.

The main thing this is of interest to us: This man believes his son benefits from vitamin B3 (Niacin) due to tryptophan's inability to be broken down to nicotinic acid without
adequate B6.

The material of interest:

We are interested in a document written by a man whose son has TS (Tourette's Syndrome), and has graduate level education in biochemistry.  I have divided his points by paragraph

Quote
Jason (13 yrs old) has TS with OCD.
ADD has not been formally diagnosed, although he has problems
with organization, distractibility, and the ability to switch gears.
My son has had allergies since he was a baby.  He
is sensitive to red dye #40 with tired splitting headaches which
make him scream until he is exhausted and sleeps.  This, of course,
hasn't happened in several years since he has avoided the dye.
He also is allergic to sulfa, molds, dust, grass, trees, and most airborn
allergens.  He has been on the vitamins below for 1.5 months and the
teachers
have said that he is a different kid.

This is obviously a strong motivation for this man.  Let's continue:

Quote
He has had a set back this week due to a new
semester with a new schedule, plus a very moldy, rainy few days.  We
gave him a little extra calcium-magnesium and one extra vitamin B3.
He said that this gave him relief from his symptoms (he has never
said this before with anything else)

His postulate:

Quote
I solidified my theory on the premise that Jason
is probably mildly vitamin B6 dependent.  He was either born requiring
high amounts of B6, and/or B6 antagonists attacked early in his first year
of life.  B6 antagonists are hydrazines (plant growth regulators,
tartrazine, etc), DOPA found in certain beans, penicillinamine, antioxidants in
petroleum, many drugs including penicillin, erythromycin, phenobarbital,
tetracycline, corticosteroids, sulfamethoxazole, etc.

He explains what knowledge he has gained about this problem:

Quote
Amino acids began building up in his system, from decreased transamination, etc.
Serotonin became decreased from tryptophan not being able to
be utilized. Allergies developed (which is in association with low B6),
I believe allergy produces swings in histamine levels which causes
a constant fluctuation in neurotransmitters capable of producing mood
swings and rages.

The conservation of vitamin B6 (when not abundantly
available) causes it to be used by the prevailing neurotransmitter system
at any given time, leaving other neurotransmitter systems less than
optimally functional.  Histamine receptors have been found to trigger
dopamine receptors directly.
Histamine is also a neurotransmitter affected by deficient vitamin B6.

Its receptor sites are probably increased to compensate.  Kinins released
into the body's tissues in response to immune complexes can damage
the blood brain barrier, thus altering the sensitivity of brain cells to
acetylcholine, serotonin, dopamine, histamine, epineprine and
norepineprine.

L-dopa doesn't readily form dopamine in B6 deficiency,
so probably dopamine is reduced causing an increase in
dopamine receptor sites along with an increase in the norepinephrine
and epinephrine (which are formed from dopamine) receptors sites.

Quote
These increased receptor sites make the nerves more excitable and
false transmitters or true neurotransmitters can set them off with
explosive qualities.   These false transmitters can
be phenolic substances, such as food additives, drugs, etc. 


(Not for Reddit) OMG guys, this hit home.  I have had serious, bizarre neurologic complications (less than 1% chance for these reactions) with medications that directly effected norepinephrine and dopamine transmitters that I took for depression and schizo-affective disorder...

Quote
The B3 is needed due to tryptophan's inability to be broken down to nicotinic acid without
adequate B6.

.....

So, if Vitamins B3 and B6 are being used for histamine production, then
serotonin production suffers. - this implicates the immune system in the problem


That's what I have now.  The note is long.  I stopped after the bolded part at the link.  I feel we need more short sentences to summarize what is being said so as to get the most amount of people to read thru this as possible.  I am beginning to wrap my head around the theory.  I believe there is something significant here!

*

Offline badgerstripe

  • Jr. Member
  • **
  • 49
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16720 on: 08/06/2012 07:10:47 »
OK I'm posting this to get some brainstorming going on our next major post on Reddit, this time to r/askscience.  The following is written as if it were to be posted there.  That's scary, as there is so much information in this!  But anyways, this has to do with a man's notes about his son's Tourette's Syndrome and vitamin B6.  There is a strong possibilty from my reading that this has something to do with POIS.  The pathophisiology is incredibly complicated, so I hope that those in r/askscience can help us!  Please add to this, come up with more, etc.  Check out the source here: http://poiscenter.com/forums/index.php?topic=197.0 [nofollow]  - (I will probably remove much of this quoted material and just put this link in the Reddit post)

Here goes:

Niacin works.  It seems to work for everyone once they understand the precise procedure they must follow in order to get relief. 

But why does it work?  This does not get immediately explained by the immunologic theory that we have now.  If it's possible that their is another factor involved that can be
manipulted, we want to know.  Now.  This disease is awful.

The main thing this is of interest to us: This man believes his son benefits from vitamin B3 (Niacin) due to tryptophan's inability to be broken down to nicotinic acid without
adequate B6.

The material of interest:

We are interested in a document written by a man whose son has TS (Tourette's Syndrome), and has graduate level education in biochemistry.  I have divided his points by paragraph

Quote
Jason (13 yrs old) has TS with OCD.
ADD has not been formally diagnosed, although he has problems
with organization, distractibility, and the ability to switch gears.
My son has had allergies since he was a baby.  He
is sensitive to red dye #40 with tired splitting headaches which
make him scream until he is exhausted and sleeps.  This, of course,
hasn't happened in several years since he has avoided the dye.
He also is allergic to sulfa, molds, dust, grass, trees, and most airborn
allergens.  He has been on the vitamins below for 1.5 months and the
teachers
have said that he is a different kid.

This is obviously a strong motivation for this man.  Let's continue:

Quote
He has had a set back this week due to a new
semester with a new schedule, plus a very moldy, rainy few days.  We
gave him a little extra calcium-magnesium and one extra vitamin B3.
He said that this gave him relief from his symptoms (he has never
said this before with anything else)

His postulate:

Quote
I solidified my theory on the premise that Jason
is probably mildly vitamin B6 dependent.  He was either born requiring
high amounts of B6, and/or B6 antagonists attacked early in his first year
of life.  B6 antagonists are hydrazines (plant growth regulators,
tartrazine, etc), DOPA found in certain beans, penicillinamine, antioxidants in
petroleum, many drugs including penicillin, erythromycin, phenobarbital,
tetracycline, corticosteroids, sulfamethoxazole, etc.

He explains what knowledge he has gained about this problem:

Quote
Amino acids began building up in his system, from decreased transamination, etc.
Serotonin became decreased from tryptophan not being able to
be utilized. Allergies developed (which is in association with low B6),
I believe allergy produces swings in histamine levels which causes
a constant fluctuation in neurotransmitters capable of producing mood
swings and rages.

The conservation of vitamin B6 (when not abundantly
available) causes it to be used by the prevailing neurotransmitter system
at any given time, leaving other neurotransmitter systems less than
optimally functional.  Histamine receptors have been found to trigger
dopamine receptors directly.
Histamine is also a neurotransmitter affected by deficient vitamin B6.

Its receptor sites are probably increased to compensate.  Kinins released
into the body's tissues in response to immune complexes can damage
the blood brain barrier, thus altering the sensitivity of brain cells to
acetylcholine, serotonin, dopamine, histamine, epineprine and
norepineprine.

L-dopa doesn't readily form dopamine in B6 deficiency,
so probably dopamine is reduced causing an increase in
dopamine receptor sites along with an increase in the norepinephrine
and epinephrine (which are formed from dopamine) receptors sites.

Quote
These increased receptor sites make the nerves more excitable and
false transmitters or true neurotransmitters can set them off with
explosive qualities.   These false transmitters can
be phenolic substances, such as food additives, drugs, etc. 


(Not for Reddit) OMG guys, this hit home.  I have had serious, bizarre neurologic complications (less than 1% chance for these reactions) with medications that directly effected norepinephrine and dopamine transmitters that I took for depression and schizo-affective disorder...

Quote
The B3 is needed due to tryptophan's inability to be broken down to nicotinic acid without
adequate B6.

.....

So, if Vitamins B3 and B6 are being used for histamine production, then
serotonin production suffers. - this implicates the immune system in the problem


That's what I have now.  The note is long.  I stopped after the bolded part at the link.  I feel we need more short sentences to summarize what is being said so as to get the most amount of people to read thru this as possible.  I am beginning to wrap my head around the theory.  I believe there is something significant here!

This is all very interesting to me as i have been using niacin for the last few months with some success.

Furthermore, all the seasonal allergies i have from February - May have not affected me this year AT ALL since i have been taking Niacin, this is unheard of. Also i have previously had a strong allergic reaction to tartrazine - blotchy purple upper torso and head with dizziness and heat. I also seem to react badly to plants containing phenols.

Does this make sense given what you have posted above?

*

Offline kurtosis

  • Sr. Member
  • ****
  • 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16721 on: 08/06/2012 12:21:55 »

That's what I have now.  The note is long.  I stopped after the bolded part at the link.  I feel we need more short sentences to summarize what is being said so as to get the most amount of people to read thru this as possible.  I am beginning to wrap my head around the theory.  I believe there is something significant here!
If you follow this hypothesis to its natural conclusion then the allergic and cognitive POIS symptoms are related. The allergic ones are caused by deficiencies in B6 (C and B3 are also possibilities) which may cause an overproduction of eosinophils. The allergic reaction causes the overproduction of histamine which uses up b6 in its production and reduces the amount that can be used for catecholamine and monoamines like serotonin. Therefore the POIS sufferer becomes deficient in neurotransmitters required for memory, focus and dealing with anxiety. They end up with cognitive impairment. Serotonin has been implicated in digestive disorders such as IBS as  the majority of the body's supply is located in the enterochromaffin cells in our guts. So the POIS sufferer will experience allergies and digestive issues, perhaps compounded by more allergies.

However, allergic reactions in one's gut may cause a negative feedback loop by reducing the body's ability to absorb nutrients from food, including the B3 and B6 that could help correct the problem.
 
The POIS sufferer may not be allergic to seminal fluid, per se, but it's more likely under this hypothesis that they're allergic to a range of things but the neurochemical reaction triggered by an O makes things much worse. My allergies resemble Marlon Brando's character in "On the Waterfront". What am I allergic to? What have you got :)

Also, the POIS sufferer with exhibit symptoms of an anxiety disorder specifically because their body is not generating sufficient dopamine and their CNS is increasing receptor sites to compensate. Any dopamine agonist may produce odd effects. So your first "hit" of a catecholamine increasing phenolic substance (e.g. something like tyrosine) or drug may make a POIS sufferer very agitated (and then perhaps very tired when you've used up available b3+b6 as part of a balancing reaction). There may also be reactions with food additives.

I did a little experiment a few weeks ago.  My doctor had prescribed me an NaSSA antidepressant but I'd only taken it once, noticing that I felt an initial giddiness and then a lethargy that eclipsed even the worst of my POIS symptoms. Similar to what Nightingale says, my doctor said this was very rare. Some tiredness was to be expected but "zombification" wasn't :) It was very similar to POIS. So I took it again one afternoon 2 weeks ago. The next morning I was still lethargic and unable to function. I was still zombified by lunchtime. So I took niacin. I got a flush and I could think more clearly. Later that day, I took another niacin and I felt great. My theory is that the sulfation of these neurotransmitters which the NaSSA relies on to normalise the amounts of serotonin (for example) given the amount of receptor sites is impaired if there's not adequate amounts of b6 which is used in the sulfation process. i.e. the POIS sufferer would be a very rare group where the drug actually makes them worse. Perhaps over time the amount of dopamine receptors would decrease dramatically BUT they would abnormally decrease due to the lack of b6.

I rarely take niacin as I was trying to get around the flush by supplementing with the P5P variant of b6. I did this because when I read Starsky's post months ago I saw that P5P is part of the enzyme that makes b3 from tryptophan. i.e. in a b3 deficient state, your body can convert this amino acid into b3 (but only if it has an active coenzyme form of b6 - p5p). However, I'm not sure this is absorbed effectively if there's a digestive issue and it's more expensive than just taking niacin. It's also interesting to note that the orthomolecular psychiatry researchers may have been on the right path as this enzyme is an inefficient way of making b3 and one of the signs of a b3 deficiency would be the presence of kynurenine in the urine. (or so it appears)

Anyway, if the b6 deficiency theory is correct then the average POIS sufferer should exhibit most of the symptoms below:
- multiple allergies including food allergies
- digestive discomfort, possible IBS
- fatigue
- cognitive impairment including difficulties in remembering and concentration.
- anxious and/or compulsive behaviour

The average POIS sufferer may simply be unlucky to be both suffering from b6 deficiency and male i.e. there may be a female analogue to POIS but, perhaps, due to the greater attention to (or acceptance of) hormonal and neurological issues caused by menstruation, pregnancy etc. it is not understood as POIS. For example, I have a sister who turned out to have b vitamin deficiencies during her pregnancy that were treated. If she was male, it's possible that those issues would have gone undiscovered as doctor's sometimes prescribe batteries of tests "on autopilot".

*

Offline stevenoc

  • First timers
  • *
  • 4
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16722 on: 08/06/2012 13:28:07 »
Hi kurtosis,

What youve written makes a lot of sence. Ive suffered with POIS for 16 years.
I have allergy to metals, IBS, Fatigue a lot of the time, remembering and concentration are absolutely dire at times.
I also have an anxiety disorder.

So glad i found this forum. I will be going to my doctor soon to see about it, maybe not just for a cure but also to make her aware of this condition.

Anyway keep up the good work!  :D

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8199
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16723 on: 08/06/2012 14:06:52 »
stevenoc,, welcome to the POIS thread of The Naked Science Forum!  We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here!
   


Please check your mail inbox for a complete list of POIS resources.
(click on "My Messages" at the top of this page)

Welcome aboard!
daveman and demografx
Your forum moderators

« Last Edit: 08/06/2012 14:24:25 by demografx »

*

Offline observercenter

  • Full Member
  • ***
  • 87
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16724 on: 08/06/2012 15:06:58 »
Is there any way to be tested for Vitamin B-6 deficiency or high dependency? Does anybody knows?

Some background:

To synthesize 1 mg of niacin, you must consume approximately 60 mg of tryptophan. The conversion of tryptophan to niacin requires several chemical reactions, some of which are regulated by enzymatic activity. One of these enzymes, called kynureninase, uses vitamin B-6 as a cofactor to shuttle kynurenine to the next step in the niacin pathway. If sufficient amounts of vitamin B-6 are not available, kynurenine is shunted into a different metabolic pathway that does not produce niacin.

Read more: http://www.livestrong.com/article/478047-does-vitamin-b6-help-convert-tryptophan-to-niacin-in-the-body/#ixzz1xD8HMM00 [nofollow]

The article that Starky has provided to us is describing how this niacin is used for making serotonine and histamine. If a severe allergy strikes, nicotinic acid prioritizes the histamine conversion and serotonine(and other neuro-transmissors) are drained(cognitive symptoms?), and nic. acid would need to be converted from tryptophan to build up more serotonin, but this does not happen if Vit. B-6 defficiency exists.
So, what is happening with Daniel? Has he achieved to regain normal Vitamin B-6 levels with the supplement, and is his body now able to convert tryptophan into niacin, so the chain is not disrupted anymore(for some time) when he has an Orgasm? This is what Daniel told us several months ago:


Hey guys,

I think that I am cured. The last eight weeks I had orgasms 99% free of symptoms.

(...) This winter I took vitamine B pills (B1, B6 and B12). Every day one for 3 weeks. These pills made me feel much better, I felt much more clear in my head. Additionally, I took every day one fenugreek capsule.

After 3 weeks I quited with the vitamine B (you can get an overdose of B6, so I thought to take care with this) and I also quited with the fenugreek. I did not get orgasms in this period, simply because I had so much work to do at my job, I could not afford to have one.
Then, after one or one and half week I started vitamine B again, every week 2 or 3 pills. So every second day. Some weeks after that I addionally started my fenugreek again. I now take two capsules every morning after my breakfast. I was following this for about 4 or 5 weeks.

First I could get every week an orgasm without any problem. And now I can get two orgasms in two days without any problem! More orgasms induced some symptoms which disappeared during the day. But I think, I will improve more so this will also be possible in the future.
I also avoid stressful situations as much as possible, I think this is important.
My life improved a lot, having an orgasm without any problem, it is really great. I hope that everybody with this disease will be cured, because it is pretty much like hell.


http://poiscenter.com/forums/index.php?topic=346.0 [nofollow]
« Last Edit: 08/06/2012 15:18:18 by observercenter »

*

Offline Habibou

  • Sr. Member
  • ****
  • 196
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16725 on: 08/06/2012 15:15:44 »
I tested the Vitamin B6 level and it was the upper average ! I did  not check neither the B3 nor the C.

*

Offline Nightingale

  • Full Member
  • ***
  • 92
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16726 on: 08/06/2012 15:57:08 »

This is all very interesting to me as i have been using niacin for the last few months with some success.

Furthermore, all the seasonal allergies i have from February - May have not affected me this year AT ALL since i have been taking Niacin, this is unheard of. Also i have previously had a strong allergic reaction to tartrazine - blotchy purple upper torso and head with dizziness and heat. I also seem to react badly to plants containing phenols.

Does this make sense given what you have posted above?

Absolutely.  The man who wrote the post i quote from has a son with allergy to Red 5, and suffers from the vitamin B6 issues explained here.  This deficiency causes entire bodily systems to have problems.

*

Offline kurtosis

  • Sr. Member
  • ****
  • 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16727 on: 08/06/2012 15:58:38 »
I tested the Vitamin B6 level and it was the upper average ! I did  not check neither the B3 nor the C.
Were you taking b3 (niacin) at the time? Also, these "levels" are difficult to determine as far as I understand it as someone can have blood serum levels which are above the threshold for a deficiency to be diagnosed but they can still be deficient. See the following article on b12 deficiency for example. http://www.aafp.org/afp/2003/0301/p979.html
A quote from this article is useful to illustrate the point.
Quote
If increased homocysteine or methylmalonic acid levels and a normalization of these metabolites in response to replacement therapy are used as diagnostic criteria for vitamin B12 deficiency, approximately 50 percent of these patients have serum vitamin B12 levels above 200 pg per mL.1 This observation suggests that use of a low serum vitamin B12 level as the sole means of diagnosis may miss up to one half of patients with actual tissue B12 deficiency. Other studies have shown similar findings, with the rate of missed diagnosis ranging from 10 to 26 percent when diagnosis is based on low serum vitamin B12 levels alone.
i.e. there's a complex system of chemical reactions that need to be in balance and a simple threshold score doesn't tell you enough. It's a pity that most family doctor's don't appear to know this

*

Offline Nightingale

  • Full Member
  • ***
  • 92
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16728 on: 08/06/2012 16:06:54 »
kurtosis, you have the highest level of comprehension I have come across re: pathology of vit. B6 deficiency here.  Would you be willing to help write this r/askscience post I am helping start, as well as perhaps answer questions that people at r/askscience will ask?  I have some education in this stuff, but I am struggling with cognition from PIOS AND transitioning between antipsychotics.  Come to the poiscenter.com forums if you are going to help, it's a more organized format for this.  Find our Vitamin B6 topic under "General Alternative Causes"

Thanks!

*

Offline daveman

  • Neilep Level Member
  • ******
  • 1002
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16729 on: 08/06/2012 18:46:27 »
All I can say on this V B6 issue is WOW you guys.

Gives me goosebumps!

I KNOW we're on to something!

It would also be great if we could somehow reduce what has just been said down into something we can get our mind around (for the less technical of us), although you've already gone a long way to helping digest it all.

It's important that we can see that "SOMEBODY" understands at least, so THANKS you guys.

We could split off a couple of threads over on poiscenter as work areas and summary areas. Of course we will be sure that there's access here too.

How does Murphey do it??

*

Offline kurtosis

  • Sr. Member
  • ****
  • 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16730 on: 08/06/2012 20:05:02 »
kurtosis, you have the highest level of comprehension I have come across re: pathology of vit. B6 deficiency here.  Would you be willing to help write this r/askscience post I am helping start, as well as perhaps answer questions that people at r/askscience will ask?  I have some education in this stuff, but I am struggling with cognition from PIOS AND transitioning between antipsychotics.  Come to the poiscenter.com forums if you are going to help, it's a more organized format for this.  Find our Vitamin B6 topic under "General Alternative Causes"

Thanks!
Thanks Nightingale. I'll check poiscenter and that thread out. Won't be today but I will do it!

Things I'd like to understand about b6 deficiencies are
- how common are they?
- theories as to how b6 deficiencies arise? (congenital / developed due to disease / other possibilities)
- what are the tests to diagnose it and how reliable are they?
- has anyone else observed sexual health issues due to b6 deficiency?
- how do we find the guy who wrote the original piece about niacin and tourettes? What happened to his son?

BTW Daveman, I can summarise it quickly. The things that people have said help them with POIS either supplement 2 b vitamins (b3 and b6) or have an anti-histamine effects (e.g. Vitamin C, H1 histamine agonists like Clarityn). So the original b3 & tourettes article is compatible with our experience of POIS.

*

Offline Lapanique

  • First timers
  • *
  • 4
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16731 on: 08/06/2012 21:04:12 »
Dang!  I just set up a monthly recurring donation on the NORD site and got an error.  I will try again later. Waiting for the site administrators to check out the error.

Anyway, I've been a silent reader of this forum for the past year.  I was overjoyed to see that I wasn't the only one with this crazy illness.  To keep things short:

My age: 30 yrs
Start of POIS: Age 11 (19 years living with it, worsened as I got older)
Symptoms: Dermatitis, Acute back pain (like acid flowing through my spine), brain fog, severe irritability and anger, anxiety, severe fatigue,
                   digestive issues (tightness in the lower left side of my abdomen, like a knot), fingers and toes get really cold also.
Duration of symptoms: 3-4 weeks (no joke, I wish it only lasted a few days)

When I was 11 and O'ed the first time, I started getting dermatitis, and had to start taking claritine to reduce the itching all over my body.  This still happens everytime I have an O.
Two months ago, I abstained for 5 weeks (don't know how the heck I did it, especially with having my wife in bed every night).  I was determined to try it.  Then I couldn't hold it any longer, I was going out of my mind.  I took 250 mg of niacin and had sex while I was having a flush.  I felt like I was having sex on a bed full of broken glass, wasn't pleasant at all.  The next 2 days were the best days of my life, I was clear headed, had so much energy, I was very happy and just didn't know how to handle all that energy.  I'm too used to having low motivation to do anything.  Anyway, the symptoms started coming back again after the 2 amazing days, so I tried some more niacin, but it didn't work that time.  I'm now seeing a Urologist that has some knowledge of this illness.  He told me I have low testosterone levels (~202, normal is above 300 I think).  He also recommended I see an endocrinologist to check out my adrenal gland since I apparently have low cortisol levels.  He prescribed some Clomiphene (clomiphene citrate) which is supposed to raise my testosterone levels slowly, even though it clearly states that this medication is for women.  I will see him again in 6 weeks and will give an update if anything great comes out of this. I will try niacin again, but this time I'll give it 45 minutes AFTER the flush, like someone mentioned on this post. 
By the way, I live in Atlanta.  If anyone else lives in Atlanta, the Urologist's name is Dr Wayland Hsiao at the Emory University.  He's a really enthusiastic person.

*

Offline daveman

  • Neilep Level Member
  • ******
  • 1002
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16732 on: 08/06/2012 21:16:34 »
Dang!  I just set up a monthly recurring donation on the NORD site and got an error.  I will try again later. Waiting for the site administrators to check out the error.

Anyway, I've been a silent reader of this forum for the past year.  I was overjoyed to see that I wasn't the only one with this crazy illness.  To keep things short:

My age: 30 yrs
Start of POIS: Age 11 (19 years living with it, worsened as I got older)
Symptoms: Dermatitis, Acute back pain (like acid flowing through my spine), brain fog, severe irritability and anger, anxiety, severe fatigue,
                   digestive issues (tightness in the lower left side of my abdomen, like a knot), fingers and toes get really cold also.
Duration of symptoms: 3-4 weeks (no joke, I wish it only lasted a few days)

When I was 11 and O'ed the first time, I started getting dermatitis, and had to start taking claritine to reduce the itching all over my body.  This still happens everytime I have an O.
Two months ago, I abstained for 5 weeks (don't know how the heck I did it, especially with having my wife in bed every night).  I was determined to try it.  Then I couldn't hold it any longer, I was going out of my mind.  I took 250 mg of niacin and had sex while I was having a flush.  I felt like I was having sex on a bed full of broken glass, wasn't pleasant at all.  The next 2 days were the best days of my life, I was clear headed, had so much energy, I was very happy and just didn't know how to handle all that energy.  I'm too used to having low motivation to do anything.  Anyway, the symptoms started coming back again after the 2 amazing days, so I tried some more niacin, but it didn't work that time.  I'm now seeing a Urologist that has some knowledge of this illness.  He told me I have low testosterone levels (~202, normal is above 300 I think).  He also recommended I see an endocrinologist to check out my adrenal gland since I apparently have low cortisol levels.  He prescribed some Clomiphene (clomiphene citrate) which is supposed to raise my testosterone levels slowly, even though it clearly states that this medication is for women.  I will see him again in 6 weeks and will give an update if anything great comes out of this. I will try niacin again, but this time I'll give it 45 minutes AFTER the flush, like someone mentioned on this post. 
By the way, I live in Atlanta.  If anyone else lives in Atlanta, the Urologist's name is Dr Wayland Hsiao at the Emory University.  He's a really enthusiastic person.


BTW Lapanique,
It helps a lot to wait until the flush passes a bit, not only so you donít feel like you are doing it on broken glass, but for some reason the effectively against POIS is several fold better.

Itís like the niacin integrates into the system more completely as the peak of the flush unfolds.
How does Murphey do it??

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8199
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16733 on: 08/06/2012 21:31:53 »
stevenoc, and Lapanique, welcome to the POIS thread of The Naked Science Forum!  We believe that 2012 is POIS' Breakthrough Year. We hope to launch serious POIS Medical Research. A great time to be here!
   


Please check your mail inbox for a complete list of POIS resources.
(click on "My Messages" at the top of this page)

Welcome aboard!
daveman and demografx
Your forum moderators


« Last Edit: 08/06/2012 21:35:41 by demografx »

*

Offline Lapanique

  • First timers
  • *
  • 4
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16734 on: 08/06/2012 21:48:39 »
Thx Daveman,

Glad to hear I still have a change at Niacin.

Does anyone else have shallow breathing and heart pain the days following an O?  I do, but these symptoms disappear completely
once I abstain for a week or two.  I sometimes get prostate spams (not often) while in POIS mode and once in a while I'll get a very sharp pain in that area, one that'll make a man scream like Mariah Carey. 

*

Offline mellivora

  • Sr. Member
  • ****
  • 152
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16735 on: 08/06/2012 22:58:16 »
Hi all,
Sorry for my long absence. Owing to work, it'll be at least July before I'm a regular here again but I'm no less motivated. Just a quick note to say I did one trial of levocitirizine (antihistamine suggested by a colleague of Dr Goldmeier). I took 10mg 5.5 hours before O and then once daily thereafter. It did not seem to improve my POIS symptoms. This is the same antihistamine that Joe Burger (poiscenter forum) used with good results (he reported symptoms were reduced by 80%). I'm one of those for whom Niacin hasn't worked well either. Levocetirizine might still work for others. Hope to catch up properly with the forums soon. When I'm not here it doesn't mean I'm not thinking of you guys and about tackling POIS! I am! Thanks to all those who are stoically active, moving us closer to the research grant and increasing our understanding of POIS. We've never been nearer to a brighter, healthier future than we are now. Its up to us to make it happen. Take care all.

*

Offline demografx

  • Moderator
  • Neilep Level Member
  • *****
  • 8199
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16736 on: 09/06/2012 00:40:09 »
THANK YOU, MELLIVORA!

*

Offline Stef

  • Full Member
  • ***
  • 72
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16737 on: 09/06/2012 01:17:51 »
Dang!  I just set up a monthly recurring donation on the NORD site and got an error.  I will try again later. Waiting for the site administrators to check out the error.

Anyway, I've been a silent reader of this forum for the past year.  I was overjoyed to see that I wasn't the only one with this crazy illness.  To keep things short:

My age: 30 yrs
Start of POIS: Age 11 (19 years living with it, worsened as I got older)
Symptoms: Dermatitis, Acute back pain (like acid flowing through my spine), brain fog, severe irritability and anger, anxiety, severe fatigue,
                   digestive issues (tightness in the lower left side of my abdomen, like a knot), fingers and toes get really cold also.
Duration of symptoms: 3-4 weeks (no joke, I wish it only lasted a few days)

When I was 11 and O'ed the first time, I started getting dermatitis, and had to start taking claritine to reduce the itching all over my body.  This still happens everytime I have an O.
Two months ago, I abstained for 5 weeks (don't know how the heck I did it, especially with having my wife in bed every night).  I was determined to try it.  Then I couldn't hold it any longer, I was going out of my mind.  I took 250 mg of niacin and had sex while I was having a flush.  I felt like I was having sex on a bed full of broken glass, wasn't pleasant at all.  The next 2 days were the best days of my life, I was clear headed, had so much energy, I was very happy and just didn't know how to handle all that energy.  I'm too used to having low motivation to do anything.  Anyway, the symptoms started coming back again after the 2 amazing days, so I tried some more niacin, but it didn't work that time.  I'm now seeing a Urologist that has some knowledge of this illness.  He told me I have low testosterone levels (~202, normal is above 300 I think).  He also recommended I see an endocrinologist to check out my adrenal gland since I apparently have low cortisol levels.  He prescribed some Clomiphene (clomiphene citrate) which is supposed to raise my testosterone levels slowly, even though it clearly states that this medication is for women.  I will see him again in 6 weeks and will give an update if anything great comes out of this. I will try niacin again, but this time I'll give it 45 minutes AFTER the flush, like someone mentioned on this post. 
By the way, I live in Atlanta.  If anyone else lives in Atlanta, the Urologist's name is Dr Wayland Hsiao at the Emory University.  He's a really enthusiastic person.

Hello, Lapanique!

I will make sure that everything is straightened out regarding your donation -- and will get back to you personally about it next week.

In the meantime, thank you for providing the name of your urologist,
Dr Hsiao. He's got great credentials and will definitely be added to our POIS researcher list!!

Learning of docs who are open-minded and enthusiastic about POIS -- and NOT referring you for cognitive testing -- is refreshing, to say the least!

Stef


*

Offline badgerstripe

  • Jr. Member
  • **
  • 49
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16738 on: 09/06/2012 08:40:44 »
All I can say on this V B6 issue is WOW you guys.

Gives me goosebumps!

I KNOW we're on to something!

It would also be great if we could somehow reduce what has just been said down into something we can get our mind around (for the less technical of us), although you've already gone a long way to helping digest it all.

It's important that we can see that "SOMEBODY" understands at least, so THANKS you guys.

We could split off a couple of threads over on poiscenter as work areas and summary areas. Of course we will be sure that there's access here too.

I think we are on to something too, it seems to make a lot of sense, its complex to understand but food allergies and previous iBS and the fact that my seasonal allergies seem to have disappeared and POIS improvement
with niacin supplements all point to this negative feedback loop and B3 and B6 deficiency causing POIS.



*

Offline badgerstripe

  • Jr. Member
  • **
  • 49
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16739 on: 09/06/2012 08:43:26 »
The final paragraph on what appears to be davemans
quote is my post... Done on a smartphone...

*

Offline kurtosis

  • Sr. Member
  • ****
  • 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16740 on: 09/06/2012 12:19:44 »
So, what is happening with Daniel? Has he achieved to regain normal Vitamin B-6 levels with the supplement, and is his body now able to convert tryptophan into niacin, so the chain is not disrupted anymore(for some time) when he has an Orgasm? This is what Daniel told us several months ago:


Hey guys,

I think that I am cured. The last eight weeks I had orgasms 99% free of symptoms.

(...) This winter I took vitamine B pills (B1, B6 and B12). Every day one for 3 weeks. These pills made me feel much better, I felt much more clear in my head. Additionally, I took every day one fenugreek capsule.

After 3 weeks I quited with the vitamine B (you can get an overdose of B6, so I thought to take care with this) and I also quited with the fenugreek. I did not get orgasms in this period, simply because I had so much work to do at my job, I could not afford to have one.
Then, after one or one and half week I started vitamine B again, every week 2 or 3 pills. So every second day. Some weeks after that I addionally started my fenugreek again. I now take two capsules every morning after my breakfast. I was following this for about 4 or 5 weeks.

First I could get every week an orgasm without any problem. And now I can get two orgasms in two days without any problem! More orgasms induced some symptoms which disappeared during the day. But I think, I will improve more so this will also be possible in the future.
I also avoid stressful situations as much as possible, I think this is important.
My life improved a lot, having an orgasm without any problem, it is really great. I hope that everybody with this disease will be cured, because it is pretty much like hell.


http://poiscenter.com/forums/index.php?topic=346.0
That would make sense. Once b6 and b3 levels were high enough to reduce the number of allergic reactions, his body could balance the amount of neurotransmitters it made and, perhaps, reduce the amount of receptors for catecholamines such that he's less "jumpy".
However, the b1, b6, b12 combination seems a bit specific. Did he say what pills he was taking and what amounts of these b vitamins were in each? I know Merck pharmaceutical produce(d?) a b-complex called neurobion forte with the specific ratio of B1 100mg, B6 200 mg, B12 200mcg. This pill is/was sold in Asia and was sometimes prescribed to people with b vitamin deficiencies by family doctors. It would be interesting to learn more from Daniel about how he ended up taking this specific combination.

*

Offline questforlife

  • Jr. Member
  • **
  • 27
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16741 on: 09/06/2012 17:51:32 »
Hello Everyone.

Its been a long time since I was on here.  The last time I was here I was talking about deficiencies and problems with gut absorption.  Nobody really took to my suggestions at the time which was disappointing.  Anyway, nonone of us are here to score points and we all have one common goal - to find out what is causing these symptoms - and how to heal us.

Mineral/vitamin Deficiencies, gut absorption problem with some form of auto-immune reaction.  In my view, a lot of nutrients in the body are lost through semen.  A lot of nutrients are used in the production of semen.   In particular b vitamins.  These are one of the most important group of vitamins for a healthy functioning body.

Deficiencies are not always caused by poor diet.  B12 deficiencies in particular can be caused by a lack of intrinsic factor in the gut.  Deficiencies also arise from poor absorption in the gut.   Some vitamins need to be used by the body in their active form (B6 is P5P) which needs the help of the liver to make the conversion.

As you can see the process is complex. 

One vitamin I think is very important in kick starting our energy levels is b12.  No amount of oral supplementation is going to get your levels of b12 back on track.  There are other ways this can be done - transdermal, intramuscular shots, sublingual. 

How many of you have had b12 levels measured? Anyone of you had b12 shots? 

See an extract below related to b12 where this person mentions the relationship between sperm and b12

"In a vegetarian society all of the above problems would be prominant as the majority of people are literally starved nearly to death for b12. Semen contains a good dollop of b12 so in a person who is literally starving for b12 because they don't eat any meat the amount of b12 lost in an ejaculation might be significant, might be enough to weaken them further, to weaken their sexual functioning further. Interestingly, a "tantric" meal in a vegetarian society often contains beef steak and fish, giving a healthy dose of active b12s, omega3 fishoils and l-carnitine, needed for b12 to burn fat in the mitochondria for energy production."

"All sorts of theories get made up when real facts are lacking. The right vitamins make all the difference in the world. If a teaspoon of semen contains as much b12 as a steak it might seem rather magical revitalizing in effect, a powerful sacrement, in a society literally starving for b12."

Scroll to the bottom of the page:
newbielink:http://forums.bettermedicine.com/showthread.php/7610-headache-after-ejaculation/page4 [nonactive]
« Last Edit: 09/06/2012 17:54:59 by questforlife »

*

Offline 0002ppdnuos

  • Jr. Member
  • **
  • 26
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16742 on: 09/06/2012 18:14:45 »
That would make sense. Once b6 and b3 levels were high enough to reduce the number of allergic reactions, his body could balance the amount of neurotransmitters it made and, perhaps, reduce the amount of receptors for catecholamines such that he's less "jumpy".
However, the b1, b6, b12 combination seems a bit specific. Did he say what pills he was taking and what amounts of these b vitamins were in each? I know Merck pharmaceutical produce(d?) a b-complex called neurobion forte with the specific ratio of B1 100mg, B6 200 mg, B12 200mcg. This pill is/was sold in Asia and was sometimes prescribed to people with b vitamin deficiencies by family doctors. It would be interesting to learn more from Daniel about how he ended up taking this specific combination.
The name of the pill he takes is Hidroxil.
I can't remember the ratio of the ingredient, but it can be easily found online.

*

Offline kurtosis

  • Sr. Member
  • ****
  • 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16743 on: 09/06/2012 18:48:29 »
That would make sense. Once b6 and b3 levels were high enough to reduce the number of allergic reactions, his body could balance the amount of neurotransmitters it made and, perhaps, reduce the amount of receptors for catecholamines such that he's less "jumpy".
However, the b1, b6, b12 combination seems a bit specific. Did he say what pills he was taking and what amounts of these b vitamins were in each? I know Merck pharmaceutical produce(d?) a b-complex called neurobion forte with the specific ratio of B1 100mg, B6 200 mg, B12 200mcg. This pill is/was sold in Asia and was sometimes prescribed to people with b vitamin deficiencies by family doctors. It would be interesting to learn more from Daniel about how he ended up taking this specific combination.
The name of the pill he takes is Hidroxil.
I can't remember the ratio of the ingredient, but it can be easily found online.
Found it, thanks.
250 mg Vitamin B1 (thiamine hydrochloride)
250 mg Vitamin B6 (pyridoxine hydrochloride)
0.5 mg vitamin B12 (hydroxocobalamin)

That's a big dose. Many 1000% above RDA I think.

*

Offline Starsky

  • Full Member
  • ***
  • 99
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16744 on: 09/06/2012 19:24:50 »
What about B1? Is tihis vitamin important in sexual reactions?

*

Offline B_Daniel

  • Sr. Member
  • ****
  • 288
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16745 on: 09/06/2012 19:35:37 »

Symptoms: ..... fingers and toes get really cold also......


Take 1000mg pills of fish oil, 2-3 times a day for 6wks and u should see great improvement on the cold fingers/toes.  At least I did.
2-5 days, 80% cognitive, tongue-tied, brain fog, lose track of thoughts mid conversation, anxiety, dry eyes, irritable, fatigue.  Believer of both auto-immune AND regeneration theories.  My sessions are much shorter when I've gone 2 wks without.

*

Offline Lapanique

  • First timers
  • *
  • 4
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16746 on: 09/06/2012 21:40:18 »

Symptoms: ..... fingers and toes get really cold also......


Take 1000mg pills of fish oil, 2-3 times a day for 6wks and u should see great improvement on the cold fingers/toes.  At least I did.
Thanks B_Daniel, I'll give that a try once I'm done testing some other vitamins/medicine: niacin, saw palmetto, vitamin B-complex, claritine (this one is a must for me because of my dermatitis/allergic reaction from having an O).  I'm trying not to take too many at once.  It's kinda crazy the number of pills/medication that we take just to try to find even a slight relief. 

*

Offline daveman

  • Neilep Level Member
  • ******
  • 1002
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16747 on: 09/06/2012 21:57:15 »
So, what is happening with Daniel? Has he achieved to regain normal Vitamin B-6 levels with the supplement, and is his body now able to convert tryptophan into niacin, so the chain is not disrupted anymore(for some time) when he has an Orgasm? This is what Daniel told us several months ago:


Hey guys,

I think that I am cured. The last eight weeks I had orgasms 99% free of symptoms.

(...) This winter I took vitamine B pills (B1, B6 and B12). Every day one for 3 weeks. These pills made me feel much better, I felt much more clear in my head. Additionally, I took every day one fenugreek capsule.

After 3 weeks I quited with the vitamine B (you can get an overdose of B6, so I thought to take care with this) and I also quited with the fenugreek. I did not get orgasms in this period, simply because I had so much work to do at my job, I could not afford to have one.
Then, after one or one and half week I started vitamine B again, every week 2 or 3 pills. So every second day. Some weeks after that I addionally started my fenugreek again. I now take two capsules every morning after my breakfast. I was following this for about 4 or 5 weeks.

First I could get every week an orgasm without any problem. And now I can get two orgasms in two days without any problem! More orgasms induced some symptoms which disappeared during the day. But I think, I will improve more so this will also be possible in the future.
I also avoid stressful situations as much as possible, I think this is important.
My life improved a lot, having an orgasm without any problem, it is really great. I hope that everybody with this disease will be cured, because it is pretty much like hell.


http://poiscenter.com/forums/index.php?topic=346.0
That would make sense. Once b6 and b3 levels were high enough to reduce the number of allergic reactions, his body could balance the amount of neurotransmitters it made and, perhaps, reduce the amount of receptors for catecholamines such that he's less "jumpy".
However, the b1, b6, b12 combination seems a bit specific. Did he say what pills he was taking and what amounts of these b vitamins were in each? I know Merck pharmaceutical produce(d?) a b-complex called neurobion forte with the specific ratio of B1 100mg, B6 200 mg, B12 200mcg. This pill is/was sold in Asia and was sometimes prescribed to people with b vitamin deficiencies by family doctors. It would be interesting to learn more from Daniel about how he ended up taking this specific combination.

The only problem that I have, is that pretty much everything fits, except that I don't have allergies. (Other than a reaction to whatever *down there* when I orgasm).

My whole "package" swells afterwards. I might say prostate, but it's more. Everything from the empididymis (that soft tissue on the testicles) up through the tubes leading upwards, through the prostate to the lower bladder area all swell up. With niacin the swelling is less, but no POIS.
How does Murphey do it??

*

Offline lauracostis

  • Sr. Member
  • ****
  • 257
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16748 on: 10/06/2012 00:37:56 »
Itís often mentioned that Niacin doesnít work for everyone, and it could well be, BUT I have worked recently with at least 3 people on a one to one basis to help with the use of niacin, and it is a VERY precise process. If itís not done JUST RIGHT, it doesnít work. So Iím certain that many who have tried it and failed have just not applied the ďrulesĒ correctly and given up too soon.

Itís really worth trying to make it work, because when it works itís amazing. I suggest that if you are one of those for which it hasnít worked, that you get in contact with one of us on a one on one to try to see if you canít make it work. I havenít spoken to any of the others yet about this, but Iím sure ObserverCenter for instance would be glad to help out.

If you are one for which it works, perhaps you can volunteer here to receive PMs to help guide someone through. They are just simple things that one might miss or ďdo wrongĒ, but they make all the difference in the world.

It would be a shame to be suffering when it isnít necessary.

Besides, if it is just a procedural thing, then we can move one step closer to understanding the mechanisms. If itís just procedural but we think itís a non-compatibility, then we understand the mechanism improperly. We misunderstand the reason for it not working in some.
Yeah, you are right Dave. The procedure should be followed VERY precisely, otherwise it won't work. This was the reason I thought that Niacin injection doesn't help me, when I have tried it very first time. But it helped me when I attempted to try it second time, in a month, because of despair. Also body needs to adapt to Niacin, very first intakes results in discomfort feelings in various areas, like area of stomach, heart or head.

I think there is also a possibility that tablets won't work for some, because of insufficient digestion. Flush effect is a good marker to determine whether Niacin digested good or not so good.

Anyone please feel free to send me a PM if you want a one to one guidance and support in trying Niacin.

Victor
You can purchase injectable nicotinic acid with a doctors prescription from any compounding pharmacy in the united states.  I had my doctor write an order for 100mg/1ml concentration.  If injected into the correct subcutaneous site, I have had a flush in less than 2 minutes. 

*

Offline kurtosis

  • Sr. Member
  • ****
  • 360
    • View Profile
Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #16749 on: 10/06/2012 12:19:50 »
So, what is happening with Daniel? Has he achieved to regain normal Vitamin B-6 levels with the supplement, and is his body now able to convert tryptophan into niacin, so the chain is not disrupted anymore(for some time) when he has an Orgasm? This is what Daniel told us several months ago:


Hey guys,

I think that I am cured. The last eight weeks I had orgasms 99% free of symptoms.

(...) This winter I took vitamine B pills (B1, B6 and B12). Every day one for 3 weeks. These pills made me feel much better, I felt much more clear in my head. Additionally, I took every day one fenugreek capsule.

After 3 weeks I quited with the vitamine B (you can get an overdose of B6, so I thought to take care with this) and I also quited with the fenugreek. I did not get orgasms in this period, simply because I had so much work to do at my job, I could not afford to have one.
Then, after one or one and half week I started vitamine B again, every week 2 or 3 pills. So every second day. Some weeks after that I addionally started my fenugreek again. I now take two capsules every morning after my breakfast. I was following this for about 4 or 5 weeks.

First I could get every week an orgasm without any problem. And now I can get two orgasms in two days without any problem! More orgasms induced some symptoms which disappeared during the day. But I think, I will improve more so this will also be possible in the future.
I also avoid stressful situations as much as possible, I think this is important.
My life improved a lot, having an orgasm without any problem, it is really great. I hope that everybody with this disease will be cured, because it is pretty much like hell.


http://poiscenter.com/forums/index.php?topic=346.0
That would make sense. Once b6 and b3 levels were high enough to reduce the number of allergic reactions, his body could balance the amount of neurotransmitters it made and, perhaps, reduce the amount of receptors for catecholamines such that he's less "jumpy".
However, the b1, b6, b12 combination seems a bit specific. Did he say what pills he was taking and what amounts of these b vitamins were in each? I know Merck pharmaceutical produce(d?) a b-complex called neurobion forte with the specific ratio of B1 100mg, B6 200 mg, B12 200mcg. This pill is/was sold in Asia and was sometimes prescribed to people with b vitamin deficiencies by family doctors. It would be interesting to learn more from Daniel about how he ended up taking this specific combination.

The only problem that I have, is that pretty much everything fits, except that I don't have allergies. (Other than a reaction to whatever *down there* when I orgasm).

My whole "package" swells afterwards. I might say prostate, but it's more. Everything from the empididymis (that soft tissue on the testicles) up through the tubes leading upwards, through the prostate to the lower bladder area all swell up. With niacin the swelling is less, but no POIS.

What you're describing could be an allergy. 
There have been many posts about people suffering allergy-like symptoms. Sometimes these are described as flu-like symptoms but it can be very difficult to distinguish between fatigue, runny nose and streaming eyes caused by flu and an allergy. Indeed, if the immune system is weakened and you come in contact with the flu virus, you might develop a flu.

I think there were some questions in the survey about allergies but it might be work a recap. It would be useful if posters could say whether they have experienced allergy symptoms in the past and whether they fit into the following categories?

- pollen / hay fever
- respiratory condition such as asthma
- sinusitis
- food allergy
- medication allergy
- animal hair allergy
- dust allergy
- insect bite / sting allergy
- mould allergy
- dermatitis or adult acne.

Also mention if you have digestive discomfort or a diagnosed condition such as IBS.

It would be good to know when did the allergy start?