[demografx]

I had a really good connection with Lindsey Savino from TLC today. I was really impressed. We spoke at length and she asked many questions and went into details. I felt really comfortable with her and hope to go forward on her project. We covered a lot of ground and I'm quite tired now! but just wanted to share the news... I think she may be still looking for more people...

Animus, thanks for filling us in! Lindsey is very dedicated and I am very impressed how quickly she picked up on the true nature of POIS ! Hopefully that will eventually be communicated to the rest of the world that insists "it's all in our heads"!

[daveman]

some news from the last time  []
I have done a "physioscann" yesterday and it is really impressive ! For people who don't know it,
It is a machine which forecast some frequencies to the body to see the reaction and look into a lot of strandards in the body (thanks to a helmet, and a computer... it is russian [])
Thanks to that, i checked my last blood results and it gave almost the same results []
I have checked many other standards and we found out some disorders :

-My Immune system is working a lot for no reason
doctor comment" it seems like a auto-immune disorder"

I asked him to value my dopamine level but unfortunatly, it didn't exist !
He prescribed me a "dopamine and DHEA test" (under my hints)

Dopamine is linked to a auto-immune reaction.

He also told me : "perhaps, you have the normal level of dopamine... but your dopamine isn't working normally... let's see the results! In this case, a dopamine disorder could explain many weird disorders playing on the immun system and the exhaution"

He said he knew a lot of natural treatments to balance the dopamine function  []

Just a little investigation before the real answer of Dr Waldinger we all are looking forward !

Very interesting. I worked with a biofeedback expert several years back on a project; she had been a PhD in the area for 20 some years. One of her interests was similar to what you mention, stimulation and evaluation of muscular and organ tissues to measure their repsonses. I hadn't given it much attention as I was more interested in EEG, and really didn't understand where she was going. Sounds like your doctor has some pretty advanced stuff. Mustn't be too many in the world working on this technology at that level ... or no?

[Green]

-My Immune system is working a lot for no reason
doctor comment" it seems like a auto-immune disorder"

I'm probably the same, never once I have got the cold outside of POIS, not even as a child, I asked my parents about it. Yet in POIS if I go outside on day 0-5 of POIS I'm always likely to get the sniffles or a runny nose, after day 7-10 it always dissapears, I suppose I've got a pretty strong immune system but in days of POIS it's impared?

[Nightingale]

Myself, my endocrinologist, my 3 psychiatrists, my psychologist, my urologist, my primary care physician, and my parents anxiously await the new study's release []

[demografx]

Nightingale, 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

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

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!

[demografx]

Nightingale, 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#.

[connor]

anyone know how smoking (cigerattes) interacts with this condition? sometimes i smoke and it elevates my mood, other times i get really depressed. i think  a "release" depletes all my nuerotransmitters and smoking eats them up even more. so i have to abstain for some time for smoking to be beneficial in mood elevation. I'm also wondering if this is the case with medications that work on nuerotransmitters. I take adderall, and I have this theory that it doesen't work as well after a release because all of my nuerotransmitters are at a low state. has anyone else noticed anything like this? other examples would be not getting as drunk after sexual activity.    my situation is a bit more complicated then people here, since ssris really completely screwed up my response to drugs, like i barely respond to alcohol or other medications anymore at all since going off them, so it could just be that. i also have pssd from ssris which is loss of normal sexual functioning after quitting antidepressants. another rare condition not really acknowledged, so i am just all sorts of fucked up right now

[Animus]

anyone know how smoking (cigerattes) interacts with this condition? sometimes i smoke and it elevates my mood, other times i get really depressed. i think  a "release" depletes all my nuerotransmitters and smoking eats them up even more. so i have to abstain for some time for smoking to be beneficial in mood elevation. I'm also wondering if this is the case with medications that work on nuerotransmitters. I take adderall, and I have this theory that it doesen't work as well after a release because all of my nuerotransmitters are at a low state. has anyone else noticed anything like this? other examples would be not getting as drunk after sexual activity.    my situation is a bit more complicated then people here, since ssris really completely screwed up my response to drugs, like i barely respond to alcohol or other medications anymore at all since going off them, so it could just be that. i also have pssd from ssris which is loss of normal sexual functioning after quitting antidepressants. another rare condition not really acknowledged, so i am just all sorts of fucked up right now

Oh, man! sorry to hear that! I quit smoking a couple years ago, and, you know, whether or not it help POIS is one thing, but it definitely helped in my overall health.

[Animus]

Well, I'm in a weird situation myself. I'm in a situation where I want to be a part of the POIS show on TLC, but my family is too conservative to appear on the show as support and providing context. They seem to think I'll be seen as too weird or strange. I tried to tell them that they will let my story guide the segment, and I'll basically be presenting the illness myself. So I'm not really worried about being weird, strange, or different for that matter. All I really want to do is open up this conversation to a wider audience maybe. I could care less what people think of me! Honestly!! I've been in front of a public group of 20 doctors or more, telling them my experience and situation, and I got lots of support and sincere offers of help and admiration for dealing with it. Some people will reject the story or think it's weird, but I'm focusing on the folks who can help.
Oh well.

[demografx]

Animus, I admire your courage. And all others who are volunteering or will volunteer for TLC.

[Habibou]

some news from the last time  []
I have done a "physioscann" yesterday and it is really impressive ! For people who don't know it,
It is a machine which forecast some frequencies to the body to see the reaction and look into a lot of strandards in the body (thanks to a helmet, and a computer... it is russian [])
Thanks to that, i checked my last blood results and it gave almost the same results []
I have checked many other standards and we found out some disorders :

-My Immune system is working a lot for no reason
doctor comment" it seems like a auto-immune disorder"

I asked him to value my dopamine level but unfortunatly, it didn't exist !
He prescribed me a "dopamine and DHEA test" (under my hints)

Dopamine is linked to a auto-immune reaction.

He also told me : "perhaps, you have the normal level of dopamine... but your dopamine isn't working normally... let's see the results! In this case, a dopamine disorder could explain many weird disorders playing on the immun system and the exhaution"

He said he knew a lot of natural treatments to balance the dopamine function  []

Just a little investigation before the real answer of Dr Waldinger we all are looking forward !

Very interesting. I worked with a biofeedback expert several years back on a project; she had been a PhD in the area for 20 some years. One of her interests was similar to what you mention, stimulation and evaluation of muscular and organ tissues to measure their repsonses. I hadn't given it much attention as I was more interested in EEG, and really didn't understand where she was going. Sounds like your doctor has some pretty advanced stuff. Mustn't be too many in the world working on this technology at that level ... or no?

Ja, it is very new and the "science of tomorrow"
It has been created by the russina centers for persons in spaceship and so on !
Ja, it will have time to arrive in USA since it is russian (i joke^^)
I will tell you my dopamine and DHEA results soon
it will arrive same as Dr Waldinder's own investiagtions !

[Animus]

Hi, Quick note to all:
How many American volunteers do we have now for the TLC show? Remember it's $1,000!
I'd like to get a feel for what the general feeling is out there, and discuss any concerns people may have if you're open to sharing them with me. Feel free to private message me as well. Remember that this is a great opportunity... We have been hoping for something like this for a long time!!

And remember- we don't know what the Waldinger study says yet! It's best to keep a few logs in the fire!

Thanks,
Animus

[CertainlyPOIS]

Hi, Quick note to all:
How many American volunteers do we have now for the TLC show? Remember it's $1,000!
I'd like to get a feel for what the general feeling is out there, and discuss any concerns people may have if you're open to sharing them with me. Feel free to private message me as well. Remember that this is a great opportunity... We have been hoping for something like this for a long time!!

And remember- we don't know what the Waldinger study says yet! It's best to keep a few logs in the fire!

Thanks,
Animus

i  am interested in sharing my story but my life is kinda boring but i think it would interestion to do senario test of in and out of pois so people can see difference. Example like IQ test in out of pois. Or maybe things audience can associate with

[nick2k22]

Hi,
My names Nick.  I have had this for many many years. 
Its not like Im tired becuase I have mental energy. I can write code forever. It's just like I'm burnt out emotionally and have terrible trouble with people. I have kind of a flat affect after an O and I can't get exicited about anything and I have no intense feelings of pleasure. The unreality is also a pretty big issue.  Also zero libido for days after.
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?

I've thought POIS has to be endocrine related or immune related, something, because this is not psychological when there is direct cause and direct effect.  It has really impacted my life. I got a degree in Biology to try to understand it. However, one things for sure, it makes life interesting.

Nobody else believed me so you guys have no idea how great it is to see you all here!
You probably do actually, it's like hope in the face of chaos.

I've tried naltrexone which had no effect, I've tried SSRI's, welbutrin, tons of anti depressants but with no results.
I've gotten blood tests with nothing abnormal.
Two things looked interesting, parkinson drugs: dopamine agonists based on the idea of dopamine depletion. Could they restore our dopamine levels and let us function again. 

Also, the progesterone seems like a great idea. 
Are there any people in the forum that have tried progesterone? If you have a GF you can get her to get you some in the form of birth control.
Thank for being here. It's great to see yall.

[Animus]

Hi, Quick note to all:
How many American volunteers do we have now for the TLC show? Remember it's $1,000!
I'd like to get a feel for what the general feeling is out there, and discuss any concerns people may have if you're open to sharing them with me. Feel free to private message me as well. Remember that this is a great opportunity... We have been hoping for something like this for a long time!!

And remember- we don't know what the Waldinger study says yet! It's best to keep a few logs in the fire!

Thanks,
Animus

i  am interested in sharing my story but my life is kinda boring but i think it would interestion to do senario test of in and out of pois so people can see difference. Example like IQ test in out of pois. Or maybe things audience can associate with

Thanks, CC. You should let Lindsey decide if your story is boring or not. don't count yourself out.
Is there anyone else?

[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 ?

[Zoop]

poised, very sorry to hear of the difficulties! For what it's worth, testosterone has helped me _enormously_ with POIS. 5 other members here as well.

Like you, I tested low for testosterone.

You've probably ever said it somewhere on this forum, but I wonder how do you feel exactly with T ? Do you still have slight brain fog, difficulties with people... Or do you feel close to be healed ??

[Habibou]

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?

[gabin]

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.

[demografx]

poised, very sorry to hear of the difficulties! For what it's worth, testosterone has helped me _enormously_ with POIS. 5 other members here as well.

Like you, I tested low for testosterone.

You've probably ever said it somewhere on this forum, but I wonder how do you feel exactly with T ? Do you still have slight brain fog, difficulties with people... Or do you feel close to be healed ??

I still get POIS, but it lasts maximum 24 hours. Previous to TRT, it was an average 4 days' misery.