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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 13/08/2011 15:23:44 »

And that forum seems cluttered too.  Too many categories to look at when there's not enough users/traffic to fill it. 

Yes, that's what I thought too.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 11/08/2011 15:28:38 »

So, it may be that it is OK to take niacin regularly--that is, even if you build up tolerance so that it no longer causes a flush, it might still be able to prevent POIS because it is still 'using up' the histamine.

I don't think POIS is about histamine though.  Have antihistamines worked for anyone? 

Though perhaps it is also depleting other things involved in immune reactions..

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 11/08/2011 15:24:58 »

I had quite a carefully thought out post about a POIS theory, asking for comments, and it seems to have been buried very quickly by intro posts, etc., and forgotten.  And before that I had had asked a question about niacinamide and it was also ignored.  This sort of thing seems to be happening lately as the number of new posters has been increasing, and the welcome posts have been getting longer, etc.

To help with the conversation in this thread, I suggest just linking to the full welcome post. For example, the new welcome could be:

"Welcome <name>,

Please see this link for a full introduction to this thread:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg364636#msg364636

We look forward to your posts!
"

And we could use tinyurl to make the url more manageable.  What do you think Demo (and others)?

Sounds like a good idea to me.

Thanks. I would like a response by Demografx about the solution to the intro post being way too long, which was indeed the main point of my above post. (The solution being a very short intro post, with a link to a longer one).  Any given page may have 3 massive intro posts on it, and very little other content.  The thread is getting very hard to read because of this, and I think we can fix this with a short intro and a link.

Along those lines, I also suggest (to everyone) when responding to a massive post, not quoting the whole post, but just quoting the relevant parts, or the first few sentences.

These two things should greatly help the readability of this thread.

By the way the reason I personally didn't respond to your post about sex/porn addiction is because this topic was recently discussed on the other forum...

Many of us do not read the other forum.... and I am sorry to hear it is hurting the ability to discuss new topics in this thread.  I do agree with CC's point, though, that the other forum is more suited to changes of topic.

Besides I seriously doubt those of us who only have an orgasm once a week are addicted to porn or sex. But anyway I've already put all my thoughts on that topic into the other forum.

I disagree, and I don't think the logic here makes that much sense...  I have orgasm less than once a week, but of course that was not always the case.  Many alcoholics, etc., will not drink alcohol for years.  That does not mean they are no longer addicted. In fact, imagine that an alcoholic DID still have alcohol once a week, rather than quitting entirely.  I am sure that would be quite a terrible experience.  If POIS is like an addiction, a problem is that we are addicted to a natural process in our bodies, which makes it very very hard to escape from.  It's not like we can say, 'OK no more orgasm or sexual stimuli ever'.  It's something that's not as much in our power.

This addiction theory seems to relate to Marnia's theory... The problem, though, is she seems to think this applies to pretty much everyone.  But I don't think POIS is just a more extreme version of what everyone experiences... I think it's something quite different.

It also relates to the neurochemical theories, which in my opinion, intuitively seems more likely than allergy/immune route.

However, I am seeing a real research immunologist soon, so I will be able to report back on that!

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 10/08/2011 01:03:25 »

I had quite a carefully thought out post about a POIS theory, asking for comments, and it seems to have been buried very quickly by intro posts, etc., and forgotten.  And before that I had had asked a question about niacinamide and it was also ignored.  This sort of thing seems to be happening lately as the number of new posters has been increasing, and the welcome posts have been getting longer, etc.

To help with the conversation in this thread, I suggest just linking to the full welcome post. For example, the new welcome could be:

"Welcome <name>,

Please see this link for a full introduction to this thread:
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg364636#msg364636

We look forward to your posts!
"

And we could use tinyurl to make the url more manageable.  What do you think Demo (and others)?

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 08/08/2011 20:22:20 »

Has anyone noticed that POIS affects their metabolism?  When I am OUT of POIS, I get hungry very easily, especially if I eat any sweet food.  When I am IN POIS, my metabolism appears more normal.  I do not get hungry easily, and sweet foods do not make me especially hungry.

This has been noticeable for the past 8 years or so.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 08/08/2011 20:18:36 »

As has been usual this past year, it seems there has been a lot of good progress since my last visit!  I want to bring up a topic that has recurred now and then, but hasn't had a full fledged discussion.

In short, I think POIS (possibly for many of us) is a type of addiction.  It results from unusual connections made in the brain, around the age of puberty, stemming from a pronounced response to sexual stimuli.  This has caused us to be 'addicted' to sexual stimulation, and has disrupted the normal neurochemical response to orgasm.  The susceptibility to this problem is likely genetic, and can be triggered by our environment.  Perhaps it is also a result of a physical brain abnormality (e.g. pituitary adenoma).  Now here's my (longer) observations:

- When I was 12, I first discovered internet pornography.  While I had not achieved orgasm up until that point, and would not for another 1.5 years, I found myself very mentally stimulated by the images.  And since there was the internet, there was a limitless supply.  I was looking at very 'normal' pornography (e.g. playboy type material), but I could tell within months that I was addicted.  I was spending a lot of time looking, and at times when I went on the internet, I would feel the almost uncontrollable urge to look at pornography.  My reasoning, as a 12 year old, was that although I felt addicted, I was not ingesting any dangerous chemical -- it was just a natural response to something -- so I was not going to physically harm myself like a normal drug addict might.  Nonetheless, I felt guilty and basically gave up pornography, with a few notable lapses, until I could achieve orgasm 1.5 years later, at which pointed I resumed my pornography use.

- Now I note that when I see pornography, my response to orgasm is altered, and even if I do not have orgasm, I will feel very stunned after looking at pornography -- poor short term memory, difficult focusing, etc.  It feels like I have been bumped on the head very hard.  I also notice that if I go without orgasm for over 8 days, I end up with similar problems.  And I am still very much addicted.  Though I do not view pornography more than once a week (and usually less than once every couple months), the urge is still there.  I even notice that if I do look at pornography, sometimes I will develop a tremor.

Unfortunately there is a stigma attached to something like pornography addiction.  Probably there is some assumption that anyone who would be 'addicted' is perverted, etc.  This is of course rubbish.  These days younger generations probably look at pornography quite regularly -- much more regularly than I do despite my addiction -- because of its wide accessibility.  I also have reasonably normal sexual tastes.

So please tell me if you relate to this story at all. 

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 27/07/2011 21:41:42 »

Can anyone comment on the important differences between niacin and niacinamide?  I read on wikipedia that niacin, once ingested, is converted to niacinamide.  Niacinamide will not cause a flush, and has some other effects.  I read in a health food store that niacinamide helps with metabolism more than niacin, but I have not been able to find this information elsewhere.  I have not yet had time to take a good look at the wiki pages, but I am curious what people are taking here -- Niacin or Niacinamide?

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 08/07/2011 19:13:51 »

Yes, Waldingers "study" was completely inept.

Ok guys.  I get that we're frustrated with Waldinger, and for good reason.  He's totally unresponsive and seems to play games with people who are pretty desperate for help.  But lets not be too harsh.  His work has really helped our cause gain recognition, and his study was not completely inept.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 08/07/2011 17:19:48 »

We have to stop going from one thing to another, and just dumping them if they don't work. We throw the baby away with the bath-water. When we could be learning from every failure. We just FAIL.

Don't we get tired of just failing?

I don't agree with these sentiments.  Yes, it's good to exercise some discipline when testing a new drug.  But, assuming the person has checked out the associated dangers and is acting responsibly, there is a HUGE amount of value in testing these drugs, even in a disorganised, uncontrolled manner.  I doubt any one drug will help all of us, but there may well be drugs which help many or most of us, and we can learn that through feedback on the forum.  The main thing I worry about is someone trying too little of a drug, or not taking it in the right way, and then dismissing it.  However, on the whole, that risk does not outweigh the benefits of cautious experimentation.  We just have to be especially wary when someone reports a 'negative' result.

I have spent the last 14 years trying various drugs, and seeing whether they have any effect on my POIS.  I assumed that maybe after another 30 years of experimenting, that I may find something that helps me manage my symptoms better.  When I found this forum, many years ago, I was really excited because then it seemed we could communicate our experiments to one another.  It was as if I suddenly had 300 lifetimes of experiments, instead of just one; in this light it seemed like maybe there would be a good treatment in only a few years.  This was partly my motivation to develop the questionnaire.  It was useful to see what everyone had already tried.

Finally, we are not 'just failing'.  People have tried things, like testosterone, fenugreek, etc., told others here about it, and they have also been treated.  Their lives have been saved.  So let us not dramatically undervalue the power of the experimentation that has taken place here, just to make a point.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 05/07/2011 22:05:42 »

Hi POIS1441,

Thanks so much for posting here!!  I am extremely relieved and excited by the idea of a treatment.

Can you please explain your scientific reasoning for why the treatment is effective?  Please, feel free to post it in Russian.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 02/07/2011 09:42:23 »

If this fails, wake yourself (if able to) and intensely contract the pubococcygeus muscle for at least 30 seconds to suppress ejaculation.

I find this makes things much worse....  the symptoms of a suppressed ejaculation are usually much worse than for an actual one, in my case. 

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 29/06/2011 04:14:23 »

Quite interesting reading:

http://yourbrainonporn.com/rebooting

http://yourbrainonporn.com/rebooting-accounts

http://yourbrainonporn.com/what-are-the-symptoms-of-excessive-porn-use

etc. (try to search the site)

Can you see the similarities in symptoms? This is not about porn, it is more likely about attitude, addiction and rewarding behaviour.

YES!!!!!

http://yourbrainonporn.com/what-are-the-symptoms-of-excessive-porn-use

Many of these posts sound EXACTLY like POIS.  I have always thought there was an 'addictive' quality to my POIS (symptoms feeling somewhat like withdrawal, needing to achieve a high, subsequent orgasms helping alleviate symptoms, etc).  I think somehow porn use may have changed the chemistry of my brain, and how I respond to orgasm. .  Hopefully this can be reversed! 

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 16/06/2011 20:04:36 »

Someone without POIS could be injected with his own semen.  That would be a satisfactory control for the purpose of Dr. Waldinger's experiment.  Injecting someone with someone else's semen would be an entirely different and new investigation.

It's a risk. Because healthy people can get new disseases by the 'strange' semen. They don't want to take that risk.
About your question (injecting non poiser and no reaction): It's done by a my allergy doctor.

Yes.  I am saying that injecting someone without pois with his own semen would be good enough as a 'control' for Waldinger's study.  This should not be that hard to do.  I don't know of any published studies where it is done though.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 16/06/2011 19:43:26 »

Research Fund Total: $2,150.00

I'd like to say I intend to donate to this fund and that it seems to be an incredibly worthy investment of money.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 16/06/2011 19:40:47 »

A time ago they injected a person who didn't had POIS, he had no reaction. In the Netherlands it is not allowed to inject a person with semen of another person.

I showed the picture of my hand. The doctor said it is the same reaction of people who have a food allergy. He said that inside the body there are the same red spots.

And the doctor said it is good to have O.'s in a regular basis. So it can trigger the body. It helps the injections.

where did you get that info ( injecting non poiser and no reaction) is there a way to reference it, that is the big question dr waldinger paper didnt answer

the fact that can inject people with other peoples semen the only reason why dr waldinger didnt didnt do test on non poisers.

Someone without POIS could be injected with his own semen.  That would be a satisfactory control for the purpose of Dr. Waldinger's experiment.  Injecting someone with someone else's semen would be an entirely different and new investigation.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 15/06/2011 22:09:03 »

hi vandemolen as i told u today is the 10th morning and last night i had a single O and today i am out of it...i am feeling so good...

Bitu8489 - I don't get it.  I've NEVER relieved myself of POIS by having an O.  Did I understand that correctly - You had multiple Os in a night, which caused a terrible bout.  So 9 days later you had a single O which made you feel better - Is that right?  Anyone else ever experience something similar?  If that's true perhaps that lends credence to the regeneration theory - as maybe with 1 O you're re-dialing some biofeedback mechanism on how the regeneration process takes place.  Just a craaaazy off the wall thought.  Might make no sense.

B_Daniel, this is not that uncommon with POIS. 

Several people, including myself, have noticed that while in POIS, another orgasm (whether it be hours or days after the first orgasm) can SOMETIMES alleviate the symptoms or cause them to improve.  It took me 10 years of having POIS to figure this out.  Obviously it may not work for you or many others with POIS.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 11/06/2011 19:26:15 »

The main consideration in the future: what is the BEST name to attract maximum $$$$ for researching our condition?

It's a good question.  I think POIS is a reasonably good name.  No false assumptions, easy to understand, and relevant papers have already been written using this name.  I can see some people thinking it does not sound technical or specific enough.  But I do not think, at this stage, we have a good enough understanding to be more precise. 

I agree with what Stefanie said about how funding will get progressively easier the more credible research is done.  And it was nice to see an emphasis on scientific rigour in her post.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 11/06/2011 19:00:50 »

A response to something she wrote in that post:

it's unclear whether "post-orgasmic illness syndrome" is the best name for this syndrome, since apparently an ejaculation is not always necessary to go under the spell of POIS. "autologous semen illness," or "autoimmune seminal fluid syndrome," may be a more succint term. Just a thought that I wanted to share.

We have discussed this here at some length.  I think post-orgasmic illness syndrome is a good name, precisely because, as you say, ejaculation is not necessary.  Orgasm does not imply ejaculation.  The Semen illness and autoimmune X would be much worse than POIS, because we don't whether this has anything to do with semen, and we don't know whether it's autoimmune.  The name POIS says broadly what this problem is without making incorrect assumptions.  (Yes, it may not include absolutely everything described here, but it is true that everyone here does suffer from symptoms following orgasm -- they do have some sort of post orgasmic illness -- and often it is exclusively after orgasm).

I am skeptical of the autoimmune hypothesis.  I think it is possible, and even somewhat likely, but no more than 50% likely to be true.  There are other major contenders.  I think it's absolutely critical that hormonal and neurological possibilities are also looked into.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 11/06/2011 18:55:12 »

Many of your NORD-POIS questions can be answered here:
http://poiscenter.com/forums/index.php?PHPSESSID=bdb9f2cf9372f713b754b1a70c9e59fb&topic=125.0

Whatever has not been already answered, I'm sure Stefanie will address here.

You can also write to her at:
rn@rarediseases.org

Thanks for the link.  This answers most of the questions.

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New Theories / Post Orgasmic Illness Syndrome (POIS)

« on: 11/06/2011 18:44:02 »

It's great to see everyone contributing what they can to research. Before contributing I would like to know more about where the money goes, and who decides what to do with it. I searched around on the NORD site but I didn't see this information. Could someone like Waldinger have access to it? Is that determined by NORD?

Yes, this is something that occurred to me also.  How much of this money does NORD get?  How do they decide who to give the money to?  Would the money just go to one person (or group), or multiple researchers?  Will they be specific about how they will spend our money?  Can we specify somewhat how we want the money to be spent, or have a 'veto' if we do not like how a group plans to spend our money?  e.g. ideally we would want to spend it on things like diagnostic tests, functional imaging, and so on, and not on 'administrative costs', etc.  We would also want to make sure that some group who was already doing research on this doesn't just grab the money.  We need our money to make a difference.  We would want it to encourage people to do some really world class research on this rare disorder, which wouldn't have been possible, or would have been really unlikely, without our money.

I am sure some (but not all) of the answers are on the NORD website, but it may be useful to have them addressed in the forum somewhere.