[demografx]

nick2k22, welcome to the POIS thread of The Naked Science Forum!



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


Our 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:

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

First POIS Research Study, 2002

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

  
Recent POIS Research Study, 2010

CASE REPORT
Postorgasm Illness Syndrome - A Spectrum of Illnesses
Jane Ashby, MRCP, and David Goldmeier, MRCP
http://www.thenakedscientists.com/forum/index.php?topic=6576.msg316781#msg316781


British Medical Journal Case Report, 2010

Case study by Dr. Selwyn Dexter of a patient with a headache-featured POIS symptom treated with progesterone/norethisterone.
http://casereports.bmj.com/content/2010/bcr.10.2009.2359.short?rss=1


There are a couple of ways to get any or all of the above 3 studies: (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

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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/psychotherapeutic community. All of this information 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 over 3 years, our POIS forum has attracted over 200 POIS sufferers worldwide who have posted here, research on an additional 200 sufferers elsewhere on the internet, plus nearly 1,000,000 page visits. Not bad for a rare malady!

[Zoop]

Hi guys,
I've taken fenugreek a few week ago and I got immediate good results. But that didn't last long, a little bit more than a week. Then all the symptoms got back, it was so disappointed. I tried to raise doses but nothing to do.
Two days ago I took some ginseng, my state improved a bit. Then I took fenugreek again and I felt as good as first time I took fenugreek. I think maybe fenugreek helps but it could consume another essential substance that ginseng bring back. If yes I got back my energy, I mean mental and physical, I'll see how it evolves. But I'm always strange with people, and I found Nick's description of his POIS. Actually I currently feel like this. It's a strange condition but at least I can study normally.
I didn't tried this on O, but when I took fenugreek for the first time it worked so I'm quite optimitic. However I'm not hurried to try. I hope Waldinger will shed light on all that.

Habibou, what about gingko ? I saw you have normal levels of dopamine but do you feel better with it ?

I stopped ginkgo cause the track of dopamine is really serious !
Let's explain
I have some urina and blood tests on monday and i need to stop it for the "science truth" ^^
but it seemed to be so much better when i took ginkgo (for cognitive symptoms!)
Now, i have some O and i stoped ginkgo and my brain forg is terrible !
there is a huge link i guess but i need confirmation..
So, either it is dopamine level, or dopamine dysfunction accroding to me.
And i work on this track as never before!

To answer for progesterone, mine was normal !
but it can be different for others?

Very interesting.
Actually dopamine is involved in two different things.
Your level of dopamine is normal, that means that the >hormonal< function of dopamine is achieved (hormones let cells of differents organs to communicate though blood). But that doesn't means that its function of >neurotransmitter< is achieved : dopamine could not to be produce enough by neurons and thus not let some neurons to communicate (those which normally communicate through dopamine). This because dopamine used to transfer information from a neurone to another doesn't go through blood. It mean that if your blood level of dopamine you can anyway have disfunctions with dopamine in your brain. I hope your doctor has understood it.
But I think dopamine is not the only one defaulting neurotransmitter in our brain. For example : I noticed that the more I see light during a day, the less problems of cognition I have. In parallel, light influences the serotonin production, another neurotransmitter. So there are probably several neurotransmitter involved
We are probably on a thread.

[demografx]

nick2k22, 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  10,000 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
nocturnal emission POIS site:http://thenakedscientists.com/

and 740 results came up for "nocturnal emission" 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#.

[demografx]

Zoop, very interesting observations and knowledge you bring to this forum!

[Hoping]

A really interesting symptom, I'm not sure if anyone else has,  is tons of earwax.  When I have an O I have tons of earwax for the entire week or two during the post O hell.
What triggers earwax to be formed?

Confirm, same for me. Seems also like it affects nose vessels and causes kind of nasal congestion that in turn makes ears compressed.

I definitely agree with this nasal swelling in POIS. It hurts my entire face and seems to compress my ear canals. My head starts pounding, and it feels like (and SOUNDS like) I'm "underwater."

[Animus]

A really interesting symptom, I'm not sure if anyone else has,  is tons of earwax.  When I have an O I have tons of earwax for the entire week or two during the post O hell.
What triggers earwax to be formed?

Confirm, same for me. Seems also like it affects nose vessels and causes kind of nasal congestion that in turn makes ears compressed.

I definitely agree with this nasal swelling in POIS. It hurts my entire face and seems to compress my ear canals. My head starts pounding, and it feels like (and SOUNDS like) I'm "underwater."

Yes, I also developed tons of earwax during POIS. It's one of the many strange symptoms I developed. But not only earwax, but also oily skin, and stronger secretions such as strong foot odour and underarm odour and oily hair. did you notice any of those too?

[nick2k22]

Yes. I too have much stronger underarm odor and oily skin and hair. Its like some hormonal system is in overdrive.
I also have the excessive thirst that someone mentioned earlier.
I really think theres alot to go on if we could just find one or several medical scientists to do a thorough study.
I would really like to do a hormone blood panel on myself at the day before and the day after O and compare the two for clues. I just dont have the money at this time.
I also had another theory about adrenaline synthesis. Alot of
our symptoms are similar to.adrenal insuffencieny.

http://www.diagnose-me.com/cond/C17669.html

Anyone had adrenaline tested or tried cortisol?

[Zoop]

I just found that sebum, compound of earwax and oil of skin was stimulated by some androgens hormones (particulary progesterone) and by some pituatary hormones (STH, LPH, MSH). So this is probably due to the hormone disorder. I guess I'll by a book about hormones ans all that, there are lots of things to illuminate, I'm convinced there are a lot of answers hiden in books.
How good is it to be able to think and seek, I love fenugreek and ginseng

[Finally]

I turned down the offer from TLC.  Since I haven't had a relationship in a while I told Lyndsay I wouldn't be right for the show. I felt it would be better for someone married as the public would be sympathetic.  Otherwise no matter who you package it there are plenty out there who love to point fingers  and decide you are an uncontrollable addict to sex or porn.  People who don't have it don't understand it as a medical condition not a lack of self control.  We've had idiots who came on this site and pretty much said that same thing(Of course what were they googling that they found us?).
I mentioned that the show's title didn't help but apparently the network wants it  for ratings.   

I have found that sea  salt immediately after seems to greatly reduce the effects and shorten  the duration from days to hours.  It is mainlty the irritating  stiffness around the spinal area that I deal with now

[Counterpoints]

Animus,
I am really happy that you are wanting to help our group, but I am concerned that you are not representative of our problems here.  You complained of symptoms after a genital enlarging pill -- you are the only case where this is true.  Also, many of your symptoms are unique to your case: thick coating of plaque on tongue, ejaculation of twice as much semen as usual, development of large amounts of earwax, excessive spine curvature, walking with your feet turned inwards....etc.  Some of these could be important, but they may also be red herrings.

I am not saying that you can't be helped or that your case is not a real case of POIS, or that your personal symptoms do not say something about POIS at large, but I am really afraid that if you go on this program you will severely misrepresent POIS.

There are only a few core symptoms that people tend to have:
- fatigue
- cognitive dysfunction (fluency of speech, difficulty focusing, remembering,... etc.)
- severe nervous system distress, anxiety, etc.

Also, most people have had this condition since shortly after puberty. 

[Dean93]

Hey Nick,

I recently had my cortisol levels tested, they were in range, but low. Tried a cortisol supplement and I don't feel anything. Perhaps it's not the problem, but I agree, many of the symptoms sound very similar. But, at least so far, It just hasn't worked for me.

For the record, the supplement I took wasn't prescription hydrocortisone (standard bioidentical hormone supplement), it was Isocort, a supplement that is said to contain some, albeit less, active cortisol than Rx hydrocortisone. Again, I don't feel any improvement. I don't know if that's because cortisol isn't the problem, or because the Isocort was ineffective.

Yes. I too have much stronger underarm odor and oily skin and hair. Its like some hormonal system is in overdrive.
I also have the excessive thirst that someone mentioned earlier.
I really think theres alot to go on if we could just find one or several medical scientists to do a thorough study.
I would really like to do a hormone blood panel on myself at the day before and the day after O and compare the two for clues. I just dont have the money at this time.
I also had another theory about adrenaline synthesis. Alot of
our symptoms are similar to.adrenal insuffencieny.

http://www.diagnose-me.com/cond/C17669.html

Anyone had adrenaline tested or tried cortisol?

[Animus]

Animus,
I am really happy that you are wanting to help our group, but I am extremely concerned that you are not representative of our problems here.  You complained of symptoms after a genital enlarging pill -- you are the only case where this is true.  Also, about 90-95% of your symptoms are unique to your case: thick coating of plaque on tongue, ejaculation of twice as much semen as usual, development of large amounts of earwax, excessive spine curvature, walking with your feet turned inwards....etc.  These could all be red herrings.

I am not saying that you can't be helped or that your case is not a real case of POIS, or that your personal symptoms do not say something about POIS at large, but I am really afraid that if you go on this program you will severely misrepresent POIS.

There are only a few *core* symptoms that people tend to have:
- FATIGUE
- COGNITIVE DYSFUNCTION (fluency of speech, difficulty focusing, remembering,... etc.)
- SEVERE NERVOUS SYSTEM DISTRESS, ANXIETY, etc.

Also, most people have had this condition since shortly after puberty.  That is a really important fact.    Also your symptom duration of 1/2 a day is not typical.

Imagine the TLC headline being 'genital enlargement pill causes excessive earwax....'  This could be a disaster for our cause!

Counterpoints:
I appreciate your points and agree that I am different in the way I got POIS, and in some of the symptoms that I had.
But I would not at all say that 90-95% of my symptoms are unique to my case. That is grossly incorrect.

I am also aware of your concern in representing this case of mine to the public. I am also concerned about the same issues that you are, and feel it is the responsibility of the interviewee to present this illness in a way that takes into consideration the overall illness and problem.

I am completely aware of the "core" symptoms and I feel it is necessary to emphasize that we all do share these core symptoms. That is the basis for this illness as it stands, and the basis for my claim of suffering from POIS.
 
I have never had a symptom duration of 1/2 a day.
My symptoms were for 3 to 7 days after orgasm depending on severity.

I had severe Fatigue, Exhaustion- which I would say is the primary thing that I suffered from. As well, I had severe Cognitive dysfunction- depression, social awkwardness- not wanting to see people. In addition I would have problems with cognitive tasks such as writing and speaking.

I also had severe "Nervous system distress" as you put it- which manifested itself in severe spinal pain along the spinal cord- which is the center of the nervous system, and episodes of blacking out and having minor seizures.

I have had a very severe case of POIS as I understand it, true there may be some variations, and I am not the typical sufferer.

[Animus]

To be honest, I am not completely comfortable sharing my story with TLC. I have concerns for my privacy.

[Counterpoints]

Hi Animus,
I know your symptoms are severe, and I sympathize with your situation.  I am also sorry for my mistake about the 1/2 day duration, I misread something you wrote earlier -- you said it takes about 1/2 a day to fully feel the symptoms.  And it is great that you want to help, I genuinely appreciate it.  I am just sincerely concerned that you would not represent the typical POIS sufferer.  Many of your symptoms are not representative -- earwax, plaque, walking with feet turned inwards, spinal curvature, more semen volume, etc.  Also, the way you say your symptoms started is unique.  I do not want to be harsh or judgemental, I am just concerned.  I hope everyone can discuss their concerns openly.

I do not live in the US so I am not a candidate for TLC.  But I join you in encouraging as many people as possible to consider it and at least talk to Lindsay.

[kristy]

Hello all

I found this forum about a week ago and it feels like a huge weight has been lifted off my shoulders.

I've been suffering from POIS (if it is that) for over ten years, not knowing anything about it or the term it's self up until I found this thread and spent some (alot) of time reading through the posts, I had read of sexual exhaustion about 6 weeks ago but until then I saw no correlation between my sexual activities and my problems.

Up until around 7 months ago the symptoms came and went regulary with varying degree's of severity (I had no idea what was causing them), when I was really bad I'd go to the Doctor have bloods taken, be examined etc etc and would always be given a clean bill of health, they would then tell me to come back to them if the symptoms persist but they would always fade away gradually and flair up at a later date.

Thinking back after reading about this condition everything seems to fall into place and starts to make sense, I havent felt 'right' in my head (or physicaly) since I was about 17.

My symptoms comprise of

Depression
Anxiety  
Lack of motivation
Difficulty thinking
Unsociable
Quite introverted
Severe muscle tremors all over from the soles of my feet up to my eyelids
Legs burning
Testicular pains/aching
Pains in penis, enlarged veins in gland
Shooting pains in Anus
Painfull urination
Pains either side of Groin
Kidneys aching
Lower back pain rising gradually and dulling midway up my spine  
Enlarged Lymph nodes in my neck and groin (been enlarged in my neck since I was 17 dont know about groin)
Severe aching in neck where the glands are enlarged  
Occasional high blood pressure
Various joint pains
Diahorea
Headaches

I may have missed some from the above but can't think of anything else at the moment.

After finding information about the condition I have not had an 'o' for 3 days and many of the symptoms have alleviated slightly others have stopped completely Diahorea and headaches for example.

Anyway, beggining of last summer June/July time I felt worse than I ever have before and after having 2 weeks off work decided enough was enough, I went to the Doctors and insisted that some thing was wrong and needed to be investigated.

Between my Doctor and a consultant (Professor of Medicine) at the Hospital I was reffered to I have had the following procedures.

Ultrasound of a Testical - feel I need to elaborate on this one, when I was around 21 I was diagnosed with a 'Hydroseal' (Google is your friend) but it was relativley small so I left it alone rather than have an operation to correct it, my Doctor thought it prudent to have it checked again just incase anything had developed, it hadn't but I was strongly advised to have the operation so that any lumps or bumps would be easily found in the future.
I had the operation, developed a blood clot and spent a week in Hospital but thats another story.

Two chest X-Rays
Echocardiogram (ultrasound of the heart)
Ultrasound of the abdomen and neck
CT scan of chest and neck
Flexible sigmoidoscopy (5 biopsy's taken)
24 hour blood pressure monitor
2 ECG's
Many blood tests checking for Thyroid, liver, Kidney's etc

All of the above came back clear.

I don't want to sound dramatic but I got to the point where I was genuinely hoping they would find Cancer.

When I had my last consultation with the Professor at the Hospital and he told me they couldn't find anything wrong with me my heart sank I felt completely helpless, he made an appointment for me in six months if the symptoms persist!!!!!!

In all I had seen 3 different Doctors over this period two saying I had an enlarged Prostate, Liver, Glands and Kidneys the other not.

After I had been given the all clear I spent many hours on the net looking at hormone imbalances and what they can cause, I went to my Doctor and went through with him some of the things I'd found, he agreed to run a blood test on my Testosterone, Cortisol and Prolactin levels.

Cortisol and Test came back within the acceptable range, Prolactin came back as 816, the normal range is 85-315. He told me he was writing the Consultant at the Hospital to inform them and see what they want to do, I've had no letters through the post so am going to see my Doctor again next week.

Now some background info

I started doing drugs from the age of 14 (occasional Cannabis) up until around 19 when I was taking everything from Cannabis to Cocaine (would this have caused/have anything to do with the problem).
I have been going to the Gym (bodybuilding) from the age of 14, I have never taken steroids but have used legal supplements over the years including

Branch chain Amino acids
Glutamin
Creatine
Nitric Oxide
Bulgarian Tribulus

The Creatine seems to have no effect either way on my health, the Amino acids and Glutamin I feel consistantly better when taking.Initially when taking Nitric Oxide and Tribulus I would feel fantastic for maybe a week or so then they would seem to have no effect so I would stop taking them, then for the following two weeks I would feel like death warmed up.

Also if it is of any relevance the symptoms are always far worse after an 'o' but looking back they also seem to aleviate with any kind of 'natural' buzz or excitment ie I went to Alton towers early last year and whilst on the rides I felt fantactic but after a couple of minutes of it finishing I felt really bad, I just wanted to sit down and go to sleep, then Id go on another ride and again I'd feel fantastic each time feeling slightly worse afterwards.

The same with driving, I own a reasonably nippy car and in the right place at the right time like to put my foot down and whilst driving like this physically and mentaly I feel great then after a few minutes of stopping it's like my mind and body go into melt down.

Sorry for the long winded post but I wanted to give as much info as possible, no doubt I've missed off some relevant and not so relevant points but hopefully it may be some help if not to the regulars then at least to the people in my position who felt they had no where to turn to.

P.S over this time my Doctor has been insisting on me taking Amitriptyline just to see if it helps, I took it for two weeks and stopped as again for the first week yes I felt much better, second week it had no effect (I felt the same as before I started taking it) and after I stopped I felt worse than before for a couple of weeks.

PPS thanks to Demografx for sending me the PDF files

Sorry if its all a bit messy and maybe difficult to read

Regards Chris

Also does anyone know when Doctor Waldingers report is going to be published      





        

[Animus]

Hi Animus,
I know your symptoms are severe, and I sympathize with your situation.  I am also sorry for my mistake about the 1/2 day duration, I misread something you wrote earlier -- you said it takes about 1/2 a day to fully feel the symptoms.  And it is great that you want to help, I genuinely appreciate it.  I am just sincerely concerned that you would not represent the typical POIS sufferer.  Many of your symptoms are not representative -- earwax, plaque, walking with feet turned inwards, spinal curvature, more semen volume, etc.  Also, the way you say your symptoms started is unique.  I do not want to be harsh or judgemental, I am just concerned.  I hope everyone can discuss their concerns openly.

I do not live in the US so I am not a candidate for TLC.  But I join you in encouraging as many people as possible to consider it and at least talk to Lindsay.

Just to respond to your points: I believe you are picking out a few odd symptoms from an exhaustive list which I once published. I repeat: My core symptoms are the same as what defines POIS for all of us.

I see your point about finding a "typical" sufferer.  The fact that POIS usually emerges during puberty is important to note because that is when there is most growth occurring in the genitals. By taking herbal sexual stimulants, one also causes a growth spurt in the genitals. However, agreed that this is not the way most of us developed the problem. From my recollection though, not everyone here developed it at puberty either.

I would also like to see a more typical case if there is one.

[Green]

Hello all

Also does anyone know when Doctor Waldingers report is going to be published      
   

Hi Chris!

Thank you for posting your experience with POIS, it was pretty good to read your experience with this debilitating illnes. It won't be long now till there is some sort of treatment for this.

Did you manage to get someone to look into your health on the NHS or was it private?

[nick2k22]

Chris,

Your prolactin levels were higher than normal?

Nick

[Counterpoints]

I would also like to see a more typical case if there is one.

There are more typical cases and that was my point...  John21 and Demografx would be examples.  But there is no point in arguing over this. You seem to have a sense of what the common symptoms are, which is good.  Also, I don't think the onset of POIS being near puberty has as much to do with 'genital development'.  Rather, it is because they are able to achieve orgasm.

Edit: I am sorry for somewhat misrepresenting your situation in my haste to 'make things right'.

[kristy]

Hello all

Also does anyone know when Doctor Waldingers report is going to be published      
   

Hi Chris!

Thank you for posting your experience with POIS, it was pretty good to read your experience with this debilitating illnes. It won't be long now till there is some sort of treatment for this.

Did you manage to get someone to look into your health on the NHS or was it private?

Hello Green, everything was done on the NHS except a consultation and a couple of blood tests which I paid for privatly.