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Author Topic: Post Orgasmic Illness Syndrome (POIS)  (Read 6454549 times)

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6975 on: 11/03/2010 03:54:29 »


Nice does that mean your doctor agrees you have greatly improved mood wise


The doctor trusts my instincts, CC. It was partly new-insurance-related (January 1 switch necessitated a different med), and my decision to lower the doses of both psych meds because of side effects.

In some ways, the major surgery experience improved mood greatly (e.g., very grateful to be alive, and much more appreciative of the goodwill of so many people that I encounter, here and elsewhere), and in other ways it continues to produce some unavoidable highs and lows following this type of procedure. But it gets better every day, luckily.

Thanks for asking, CC.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6976 on: 11/03/2010 04:09:40 »


Sufferer, how long did you use deoderant before noticing a difference?


I saw a difference in 3-4 days once stopped.

PS.


Not to put a damper on it, but I would like to humbly encourage some cautious optimism for several months. I only say this so as to avoid any crushing disappointment over the long haul. It's happened, not always, but too many times to me and to others. Just one example: the placebo effect unfortunately is all too real. But I am not saying that this will happen here!

I wish you the absolute best with this potential treatment! :)
« Last Edit: 11/03/2010 04:13:43 by demografx »
 

Offline RhythmSpring

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6977 on: 11/03/2010 05:25:27 »
Just one example: the placebo effect unfortunately is all too real.

What's wrong with the placebo effect if it works?
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6978 on: 11/03/2010 06:54:24 »

Because eventually it stops working. It's not real.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6979 on: 11/03/2010 12:16:46 »
I think it something you guys should try, its so easy to do....

I do think from all the reading I do on this forum that yes it might have worked for me, but I think everyones POIS is related but we all have different triggers, so try it and report back, and of course if my condition changes I will let you all know....

PS.

I really hope this continues to work for you POIS-SUFFERER, thanks for posting your findings. I can say that for me it's not a solution since I don't use deodorant! However, like you say, we may all have different 'triggers'.

If your improved state continues and we are to explore all possibilities then perhaps we should also investigate if there is something actually in your new aluminium-free deodorant that helps. I wonder if you and emanmern (who also reported POIS improvement after giving up aluminium deodorant) are by coincidence using the same new deodorant or ones both containing a POIS-killing ingredient that wasn't in your old deodorant?

There is a way to try and test the above if you wanted to. If aluminum deodorant was the problem then if you stop using deodorant altogether one would expect that your POIS improvement would still continue. If its something in the new deodorant that is responsible for the improvement then stopping using deodorant altogether might lead to symtoms coming back and starting to use it again should restore your improved state.
« Last Edit: 11/03/2010 12:18:27 by mellivora »
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6980 on: 11/03/2010 17:27:30 »
So that said what type deorderant are you using?

I'm looking for a permanant placebo effect!
 

Offline Porke

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6981 on: 11/03/2010 17:47:48 »
2nd post relating to Parlodel (Bromocriptine)

Had a try at it again this weekend. This time it did nothing for me, i felt 'hungover' for atleast 3-4 days this time. My first attempt with this drug was very promising, I def thought I had some results there..

Not quite ready to give up on it completely, I will try it for a few more times and post feedback...
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6982 on: 11/03/2010 19:49:30 »
author=neilep

Any suggestions/recommendations for treatments read and shared here are purely just for information purposes and must first be talked about with your GP. Please note that any referrals to treatments are down to peoples own personal opinions and that everybody's bio-chemistry is different...plus, you must consider the reactions with existing medications that you may be on and the possibility of allergic reactions too.

Please note that whilst we hope you find the info here interesting and informative on The Naked Scientists website, it really is just for general information purposes and does not constitute bona-fide authoritative advice and thus no assurances regarding the accuracy or applicability in relation to your own specific situation is given. PLEASE SEE YOUR DOCTOR before commencing a new treatment.
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6983 on: 11/03/2010 21:05:59 »
I got an answer (by email) from an endocrinology professor. He told me to check catecholamine levels by a 24h urine test...
Anybody heard about this before?

Catecholamine tests I have had by 24 hour urine sample have come back normal.

Don't let that disuade you from getting yours checked though as we shouldn't jump to assumptions based on one or two negative results. Despite the fact that we all have similar symptoms, we don't always get the same test results so its important to learn as much as possible about your own body to help you move forward and find a cure. Also, the more of us that get tested (in general, not just for catecholamines), the bigger our sample size of results and the easier it is to spot patterns in our results that might lead to a cure.

Even if no problem is found with catecholamine levels (or indeed in other tests) negative or normal results are still important in helping to narrow down possible mechanisms of POIS.

If possible, its probably a good idea to test yourself both when you are not feeling POIS symptoms and again when you are feeling POIS symptoms to get 'before' and 'after' results.
« Last Edit: 11/03/2010 21:15:56 by mellivora »
 

Offline mellivora

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6984 on: 11/03/2010 21:13:29 »
I had a short synacthen test a while ago and have realised I never found out the result (which probably means the result was normal as usually my doc would get in touch if it wasn't). I'll make an appointment to check the result soon. Has anyone else had this test? It tests adrenal function - mainly cortisol production I think.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6985 on: 12/03/2010 01:55:15 »


I'm looking for a permanant placebo effect!


Well said, Limejuice!

For all of us!

       ;D           ;D
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6986 on: 12/03/2010 16:19:44 »
We've made good progress in 2010. I'm excited for the up coming months!
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6987 on: 12/03/2010 17:59:11 »

I agree! Thanks for saying that, Limejuice. I'm sure that will inspire hope amongst many people here!


                  
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6988 on: 13/03/2010 10:52:07 »
2nd post relating to Parlodel (Bromocriptine)

Had a try at it again this weekend. This time it did nothing for me, i felt 'hungover' for atleast 3-4 days this time. My first attempt with this drug was very promising, I def thought I had some results there..

Not quite ready to give up on it completely, I will try it for a few more times and post feedback...

I took cabergoline.  It has some risks associated with it that bromocriptine doesn't, and if you consider taking it, consult with a physician.  I don't think it's a good option for more than say, 4 months. HOWEVER, I think for many people cabergoline is a much better drug for these types of tests than bromocriptine.  It has an extremely long half-life.  Taking one 0.5 mg tablet of cabergoline is like taking a significant daily dose of bromocriptine for a week.  You only need to take 1 pill a week.  And generally I think there are fewer side effects.

Also, when you experiment with these types of drugs, I don't think you can expect an immediate cure.  Sometimes the neurotransmitters need to build up for months, before, for instance, your physiological response to orgasm is significantly altered.  For example, someone is not going to cure himself of serious depression by trying a couple SSRI pills now and then.  It needs a dedicated trial.

So I don't know how valuable it is doing 3 or 4 isolated experiments.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6989 on: 13/03/2010 20:08:48 »

CP, did you see the post asking you about wiki?
 

Offline ophicus1213

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6990 on: 13/03/2010 21:00:30 »
Hello everyone, It have not posted in a while but I have been checking in on the blog. I have been a self diagnosed Pois sufferer for ten years and until the last year I was convinced the cause of my pois was from excessiveness in my youth.  I thought that I was really messed up, because my pois would last for months even though I was abstaining.  After some thought I realized that there must be something else in my life that was causing this problem, and my pois was just a reflection of an underlying issue.  I started to look at food because that was one thing in my life that remained constant.  Influenced by Edgar Cayce, I fasted around november time frame, around the time of my last post.  I was trying to use it to clear all foods from my body, and isolate a possible food sensitivity.  I did feel much better while fasting, but when I came off, it was much harder to pinpoint.  I suspected cassein and gluten, eliminated them from my diet with no positive results.  I recently sought out a Naturopathic Endocrinologist who speacializes in behavior in my area.  I prefer this route because they choose to look at the whole body and nutrition instead of just medicating symptoms.  I took a full circadian salivary hormone test both sex hormones and adrenals.  As expected, the results of the tests showed that my testosterone levels were extremely low as were my dhea levels.  I was prescibed a custom hormone cream to balance adrenal insufficiency and raise testosterone leves, and a complex of dietary enzymes.  Within the first day using the enzymes I noticed a change in my digestive system and realized how bad it had been, previously unaware.  It was suggested that I take the biofeedback exam, which measures the energy inside your body through resonance.  This test confirmed by blood food antibody test showed that I am allergic to dairy, and egg whites. Which triggered an allergic reaction in my body, inflamed my small intestine, prevented the uptake of any vital nutrients, minerals or amino acids(neurotransmitter precussors), sent my body into an allergic response fight or flight scenario, and with the added stress of orgasm caused my Post orgasmic illness.  This allergy was completly unknown to me which is common.  I paired it with orgasm, and orgasm incorrectly became the cause.  Humans did not evolve consuming the milk of other organisms.  I feel 95% better in a very short amount of time with just the elimination of dairy and eggs.  Twenty five years of poisoning will take time to heal, and hopefully I will reach new levels.  I am in no way saying this is the cause of pois.  It was for me.  I will not mention the products I used because I don't want people running out and buying something that may not work for them.  All I am saying is consider your nutrition, food sensitivities, environmental allergens, vaccine exposure, and heavy metals.  Our symptoms are more suggestive of chronic fatigue and digestive problems, I also had prostate trouble which was relieved in days. 
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6991 on: 13/03/2010 23:37:53 »

ophicus, thanks for sharing that !
« Last Edit: 14/03/2010 16:25:34 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6992 on: 14/03/2010 00:25:41 »
 
Hi, POIS members and newcomers!

I've created an online CHAT ROOM called "POIS".
Please join or start the realtime discussion! This way we can perhaps get to know each other better and facilitate The POIS Cure(s) Of The Century! :)

The best way into the Chat Room is at the following URL:
http://forums.delphiforums.com/POIS/chat

I don't have to be there. Just feel free to use this as your "POIS Lounge"! Whenever you want! Invite or join a co-member(s) from our POIS Forum for a more informal and realtime chat/discussion of your theories, wishes, ideas and thoughts.

In order to provide personalized services and access control, you'll need to go through a quick registration if you've never participated in a Delphi online Chat before. It only takes a minute and it's free!

I'm eager to hear comments and suggestions. Let's get the conversation started!

Best regards,

demografx

ps- Please note: I don't mind paying for this chat room out-of-pocket, but if the room is not used much I will shut it down. I recently started it with a 3-month trial.
« Last Edit: 14/03/2010 16:26:32 by demografx »
 

Offline poised

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6993 on: 14/03/2010 12:43:28 »
Hi all,

First I'm very glad to find people at last who at least will understand me. It is very hard to live on with the problem and keep it inside. Up to now, I didn't find anything that could identify my problem. But now I found this POIS community.

So, I have POIS. I'm 27. It began about 2 years ago with minor symptoms. I got weaker than before after ejaculation. At first I related it to a normal condition after sex. But symptoms got more severe and severe. It began to affect my mind more and more. Affecting the mind.. It's the worst experience I had/have. After ejaculation in several hours it begins: my mind is severely impaired for 4-5 days.  It is so severe impairment that I can't find words in simple commonplace situations, let alone my complex work, it's a torture. It is a great difficulty to remember some simplest facts. I can't communicate as usual. All I think about is not giving signs of my intense stupidity. Lack of basic psychomotor functions like concentration, motivation, etc. As a result, a severe depression.  There are also physiological symptoms like headache, pain in joints, etc. After 4-5 days, a semi-POIS condition longs for a long time. It is very rare that I restore my mind to the full potential.

Now I have two goals:
1. Restore to my normal condition. I started taking antidepressants, as my neurologist advised me, and B-complex vitamins. No ejaculation during this time. It is incredibly hard, but I'm going to try to be asexual for a long time. I don't want my mental dysfunction to affect my life, it's already affected it in some ways.
2. Find out the cause and treat the syndrome, like you all guys.
 
I hope we will find a reliable treatment for this disease.
 

Offline poised

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6994 on: 14/03/2010 13:12:48 »
This test confirmed by blood food antibody test showed that I am allergic to dairy, and egg whites. Which triggered an allergic reaction in my body, inflamed my small intestine, prevented the uptake of any vital nutrients, minerals or amino acids(neurotransmitter precussors), sent my body into an allergic response fight or flight scenario, and with the added stress of orgasm caused my Post orgasmic illness.  This allergy was completly unknown to me which is common. 

A good idea about a diet, ophicus1213. Sometimes, it seems to me that I feel worse after having some diaries. Probably it's one of the causes that this allergy prevents the uptake of vital components.
 

Offline Limejuice

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6995 on: 14/03/2010 16:00:05 »
ophicus1213! This is a great insight.  I've been sensative to 'carbs' ever since the onset of POIS 15yrs ago.  (Wow, 15yrs ago) The sensativities were never life threatning and never produced physical bumps/hives so I didn't take it serious.

After reading your post it sounds like allergies can be subtle.  I now have a suspicion that I might be allergic to wheat, not carbs.  My next step is to schedule an allergy test with doctor.
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6996 on: 14/03/2010 16:32:02 »
poised, welcome to the POIS thread of The Naked Science Forum!




Here are some POIS resources which may be helpful to you:


Our new POIS chatroom (realtime chat!). Invite or visit another member(s) there, ANY TIME! We can all get to know each other better, !
http://forums.delphiforums.com/POIS/chat

Our new POIS Information Website, built by "mat780", is here:
http://sites.google.com/site/POISwebsite/

Please see "B_Jim"'s POIS Summary of All Cases, here as well as others on the Web. This includes remedies that we have tested, and results.
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg149009#msg149009

"Girlwind" has created an excellent POIS Video:

And filling out the POIS survey created by "Counterpoints" will enable you to share POIS information and details with others here. This will also enable us to work more easily with outside researchers by having more organized data available about us:
http://pois.olympe-network.com/

POIS Research Study

We have a copy of the first and only formal medical investigation on POIS by Dr. Marcel Waldinger,MD and Dr. Dave Schweitzer, MD.

There are 2 ways to get it: (1) if you want a PDF copy, send me a Private Message (PM) with your regular email address (use "AT" instead of "@" ) and I'll send you back the PDF. Or, if you prefer, (2) I can simply reply with a Private Message (no regular email needed) and provide you with a simple text version embedded in your PM.

To send a Private Message, click on "Messages" at the top of this page. At the Messages page, click on "New Message". From that point on, it works just like posting a message here, except that it only goes to the person(s) you designate.

Remember to put a quote around my name, i.e., "demografx".


New York Times article,

January 20, 2009
Mind
Sex and Depression: In the Brain, if Not the Mind
By RICHARD A. FRIEDMAN, M.D.
http://www.nytimes.com/2009/01/20/health/views/20mind.html?_r=1&scp=1&sq=friedman%20sexual%20January%2020&st=cse

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition to serving our own informational interests, the resources listed above can be useful for you to show our credibility to the medical world - which often shows little understanding and is sometimes skeptical of our condition: POIS has scientific underpinnings and POIS is not "just another psychological problem" related to sex - to be treated by the psychiatric/psychotherapist community. All of this can greatly help you to fight the immediate reaction of some doctors: so just tell them, "IT'S NOT "ALL IN OUR HEADS"!

Also, it can be helpful when dealing with medical professionals to point out the successful existence of our rapidly growing forum, which has already been referenced in respectable sources such as the British Medical Journal and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For for over 3 years, our POIS forum has attracted over 150 POIS sufferers worldwide who have posted here, plus nearly 600,000 page visits. Not bad for a rare malady!
« Last Edit: 16/03/2010 03:22:22 by demografx »
 

Offline demografx

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6997 on: 14/03/2010 16:35:32 »


poised, this post will help you find information about POIS that we have already discussed, by tailoring a Google search to this forum:


SEARCH THE FORUM WITH GOOGLE

We have an overwhelming amount of data: 3 years' worth of posts (over 7,000 posts!) from 150+ Forum members, and an additional 150 POIS sufferers found elsewhere on the Internet by Member B_Jim.

In the Google search box, type
whatever-it-is-you're-interested-in-finding-out[space]POIS[space]site:http://thenakedscientists.com/

for example, I tried
demografx POIS site:http://thenakedscientists.com/

and 1,000+ results came up for "demografx" within the Forum.

be careful with spaces (you can use them before the word "site") and no-spaces (everything after the word "site")

Google even provides you results with the Message# for each result. But Message #'s do change, so be patient and look for the approximate Message#.
 

Offline Counterpoints

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6998 on: 14/03/2010 20:03:27 »
Welcome Sick.

Can somebody update wiki's Pois article by adding something about Thisisme recent study (progesterone) ? Thank you :)


Counterpoints?

Anyone can update the Wiki.  But if one does so, make sure that the updated text is:
1) Sourced
2) Scientifc

Otherwise there will be a flame war (in the wiki community), and the article could get deleted.

I have just updated the wiki to include the new article.  I have also edited some of the text and referenced our forum. If any
wiki expert could check the references and make sure they are done properly, that would be appreciated!




« Last Edit: 14/03/2010 21:20:22 by Counterpoints »
 

Offline Guthrie

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6999 on: 15/03/2010 00:34:14 »

Anyone can update the Wiki.  But if one does so, make sure that the updated text is:
1) Sourced
2) Scientifc

Otherwise there will be a flame war (in the wiki community), and the article could get deleted.

I have just updated the wiki to include the new article.  I have also edited some of the text and referenced our forum. If any
wiki expert could check the references and make sure they are done properly, that would be appreciated!



Nice updating, Counterpoints!  I especially liked the way that you linked to our forum indirectly, via Dexter's article, which gives our forum an 'official' scientific source!
 

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Re: Post Orgasmic Illness Syndrome (POIS)
« Reply #6999 on: 15/03/2010 00:34:14 »

 

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