Free Flow Discussion about POIS

[demografx]

Thanks for the pics demografx! It feels amazing finally being so close to some bona fide POIS analysis. It's a deeply welcomed switch from all the charlatans and their delusional, non-scientific & quack schemes we've seen so much of in the past.

We've been seeing at the forum "all the charlatans and their delusional, non-scientific & quack schemes," ever since Day 1 of the forums in February, 2007! They never stop, they just go away (temporarily) and then are replaced by the next charlatan

8 years of wading through nonsense.

But we're still lucky; many other rare disorder groups are still struggling with the Paleolithic Era of Research. Like we did.

[Bulbo]

andy451,i thank you for participating in the research

[demografx]

I'm still excited at the possibility of that ear stimulator working on POIS!

As per Dr. Komisaruk's recent email to me: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."

[demografx]

I could not upload a PDF and I got an error message. Would be best to put it on a site and post the link to this forum if possible.
FB

Try this? http://www.scribd.com/upload-document

I hear good things about this site

Thanks , guys !

But I finally got my old standby to work: photobucket. com

It converts PDF 's to links/URL's pretty easily.

Colm also deserves praise for trying to help via PM. Thanks, Colm !

[daropac]

I'm still excited at the possibility of that ear stimulator working on POIS!

As per Dr. Komisaruk's recent email to me: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."

Is the hypothesis that this would be worn during orgasm?   For a limited time after?  For an extended period after?  Completely understand this is all speculation at this point, just curious if this has been discussed at all

[demografx]

I'm still excited at the possibility of that ear stimulator working on POIS!

As per Dr. Komisaruk's recent email to me: "The device stimulates the vagus nerve projections to the brain, thus activating the brain regions to which the visceral organs normally send their information. Thus the stimulation may interact beneficially with the visceral input to the brain, which may have become disrupted, as represented by the POIS symptoms."

Is the hypothesis that this would be worn during orgasm?   For a limited time after?  For an extended period after?  Completely understand this is all speculation at this point, just curious if this has been discussed at all

All depends on how participant trials go !   

[demografx]

edit to above: Dr K or Dr Lakshmin would be the ones to ask. They probably have some idea how they will ask us to "trial the device" -- but when I saw Dr K my impression was that he wanted to try different things.

Their email addresses can be found above on this page.

[demografx]

Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html

[FloppyBanana]

Hi Demo,

Is the Nemos devise the one that will be used in the study or is that just one example of a tVNS device?

Thanks FloppyB

[demografx]

I haven't seen the device. But I'm sure the concept of the hardware is the same. The trials will be adjusted strictly to the participant's POIS reactions throughout the procedure.

[demografx]

Bookmark your POISCenter RSS for

your iPhone:


http://reader.mac.com/mobile/v1/http%3A%2F%2Fpoiscenter.com%2Fforums%2F%3Faction=.xml;type=atom


OR


http://tinyurl.com/kxtbx6a

[demografx]

Welcome to POISCenter!
 



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

We are proud to announce our first POIS research grant, awarded in December, 2013, to be managed for us by the National Organization for Rare Disorders (NORD). Grant awarded to:

Barry Komisaruk, PhD (Principal Investigator), Distinguished Professor of Psychology
Rutgers University
Newark, New Jersey, USA
Study title: Is POIS a Case of Vagal Dystonia? -- An fMRI Brain Activity Analysis

More about our Grant:
You can start here, continue reading following pages and other forum threads:
http://poiscenter.com/forums/index.php?topic=426.msg11042#msg11042

Click here to see Mat780's excellent YouTube POIS Channel.   Mat's YouTube videos include (1) our great new April 12 POIS TV Documentary. A must-see. And (2) The Learning Channel documentary, featuring our forum member "Animus".

Click here to see The POIS reddit post.  Outsiders (non-POISers) spontaneously gifted NORD's POIS Research Grant $1,000+ from this reddit post. Thanks to "mellivora" and "CertainlyPOIS"!

Our POIS chatroom (realtime chat). Invite or visit another member(s) there, ANY TIME. We can all get to know each other better:
Just click here first, and then look for "CHAT" button towards top of page, 6th button to your right!

Our POIS Forum - architectural genius: "Daveman" - for detailed subject-by-subject discussion.
http://www.POISCenter.com/forums/index.php

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

The POIS Information Website is home to the POIS Forum Compendium, written by "Pyropeach", and contains theories already discussed here and treatments that have both worked and failed.

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:
http://www.youtube.com/watch?v=UWBxAUC9k1g


Post Orgasmic Illness Syndrome "POIS": Case report

Authors:
Abdalla M Attia*, Magda H Al-Ziny, Hossam A Yasien
*Corresponding author: Andrology Unit, Minoufiya University, Shibin El Kom, Eygpt

For more info, check out emi_b's  SMF POIS thread:
http://poiscenter.com/forums/index.php?topic=191.0;topicseen


POIS Research Studies available Upon Request:

1. and 2. POIS Research Studies, 2011

These 2 papers reveal Dr. Waldinger's POIS autoimmune hypothesis and suggest one possible avenue of treatment.

3. First POIS Research Study, 2002

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

   
4. 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


5. 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


How to get any or all of the above 5 studies: send the Administrators "demografx" or "daveman" a Private Message (PM) with your regular email address (e.g., jim@abc.com) and we'll send you back the PDF(s).

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


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 YOUR HEAD'! "





It can be very  helpful to you when dealing with medical professionals to point this out. Click to see

POIS' official listing, as recognized by the
National Institutes for Health (NIH), Office of Rare Diseases Research:

And in Europe: Orphanet now lists POIS on their website. - Click here.

The Post Orgasmic Illness Syndrome (P.O.I.S.) Forum is listed in the organization database of the National Organization for Rare Disorders (NORD) -- http://poiscenter.com/forums/index.php.  The link for this, through their home page, is --
http://rarediseases.org/rare-disease-information/organizations/byID/3136/viewDetail.


POIS also appears in credible medical sources such as the Journal of Sexual Medicine (Dr. Waldinger's study), British Medical Journal (Dr. Selwyn Dexter's study), and wikipedia:
http://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

For over 5 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 our pages have been read nearly 2,000,000 times. Not bad for a rare malady.

Show some of this to your doctor - with pride. Chances are, you know far more about POIS than s/he does. Don't be intimidated by fancy diplomas. It's almost impossible for any one doctor to know much about POIS before you walk into his/her office. Unfortunately, it's up to you to educate them. And if you happen to find yourself with a disagreeable "student"-doctor (you're the teacher), find another doctor. Quickly!

SEARCH THE NSF FORUM ARCHIVES WITH GOOGLE

We have an overwhelming amount of NSF data: more than 5 years' worth of posts (over  10,000 posts!) from 200+ Forum members, and an additional 200 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]

https://www.rarediseases.org/about/medical-advisory-committee

MAC -- a powerful reminder of why "vagus nerve" is our next step in POIS investigation

These are the people who voted Komisaruk over anyone (incl groups) over Dr K.

demografx

ps - we all PAID $2,500+ for this recommendation

[Stef]

https://www.rarediseases.org/about/medical-advisory-committee

MAC -- a powerful reminder of why "vagus nerve" is our next step in POIS investigation

These are the [people] who voted Komisaruk over anyone (incl groups) over Dr K.

demografx

ps - we all PAID $2,500+ for this recommendation

Just to make sure it's clear to everyone, the Medical Advisory Committee (MAC) receives no payment for their HOURS of review and discussion about each application. Their
participation is purely voluntary -- 5 men, 3 women -- each a scientist and an experienced researcher.

NORD charges a $3,500 administration fee for each grant that gets awarded. That translates to 0.90 cents of each $1.00 going directly to your research.

Stef

[demografx]

Thanks for clarifying, Stef !

MAC selection is sooooooo important to  the objective next steps needed for a rare disorder to take !

[Myers6609]

I don't know if anyone's seen the Verizon Math Fail video, but I just read .90 cents as .90 dollars and freaked out a bit. 🙀

[demografx]

Vagus Nerve presentation on YouTube:
https://m.youtube.com/watch?v=5d6e_Un6dv8







Presented by Dacher Keltner
http://psychology.berkeley.edu/people/dacher-keltner

[demografx]

https://www.rarediseases.org/about/medical-advisory-committee

MAC -- a powerful reminder of why "vagus nerve" is our next step in POIS investigation

These are the [people] who voted Komisaruk over anyone (incl groups) over Dr K.

demografx

ps - we all PAID $2,500+ for this recommendation

Just to make sure it's clear to everyone, the Medical Advisory Committee (MAC) receives no payment for their HOURS of review and discussion about each application. Their
participation is purely voluntary -- 5 men, 3 women -- each a scientist and an experienced researcher.

NORD charges a $3,500 administration fee for each grant that gets awarded. That translates to 0.90 cents of each $1.00 going directly to your research.

Stef

Stef, you know I spent time in the fundraising field.

90% funding going to research (vs. Admin, overhead, salaries, etc)...is unheard of!

We got a Real Home Run for our money. I'm so glad we met!!

[lauracostis]

Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html

Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit.  The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014).  This is simply done by placing the TENS electrode on the tragus of the ear.  The electrical signal given to participants was (200 microseconds @ 30 Hz).  Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States.  I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.

Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death.  Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.

Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:

1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.

ANDS ALSO the original study below by Clancy et al. 2014

2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract

Article by Dr. Lauracostis

[Andy451]

Vagus Nerve Stimulator
http://www.cerbomed.com/transcutaneous-Vagus-Nerve-Stimulation-88.html

Anyone looking into transcutaneous Vagus Nerve Stimulation devices (tVNS) such as Nemos by Cerbomed should consider that this devices is simply an expensive TENS unit.  The 4000 dollar device is based off of studies that used a standard TENS unit($150 on Amazon) to stimulate the auricular branch of the vagus nerve distributed to the skin of the ear(Clancy et al., 2014).  This is simply done by placing the TENS electrode on the tragus of the ear.  The electrical signal given to participants was (200 microseconds @ 30 Hz).  Besides that fact that Nemos is expensive, it is also only approved in 3 European countries and is not available in the United States.  I think it is unlikely that our POIS study will use Nemos, most likely they will just be using a modified TENS unit that fits and stays on the tragus.

Although Cerbomed states that Nemos is safe(this is a non-invasive device), invasive surgically implantable vagus nerve stimulation devices have been associated with much higher rates of cardiac death.  Stimulating the vagus nerve causes a change in heart rate variability, this not recommended without supervision by a medical professional.

Anybody interested in learning more about TENS units to stimulate the Vagus nerve should read these articles:

1) University of Leeds. "'Tickling' your ear could be good for your heart." ScienceDaily. ScienceDaily, 19 August 2014. <www.sciencedaily.com/releases/2014/08/140819200211.htm>.

ANDS ALSO the original study below by Clancy et al. 2014

2) Jennifer A. Clancy, David A. Mary, Klaus K. Witte, John P. Greenwood, Susan A. Deuchars, Jim Deuchars. Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity. Brain Stimulation, 2014; DOI: 10.1016/j.brs.2014.07.031
http://www.brainstimjrnl.com/article/S1935-861X%2814%2900260-5/abstract

Article by Dr. Lauracostis

Very interesting! Thank you for that.

Upon thinking about this new research and vagus-nerve dystonia, I realized that I have always had issues with my ears and wonder what the connection may be... As a child, at age four I spiked 3 fevers above 104 degrees from ear infections! Also, I was diagnosed with auditory processing issues in school as a child. I have also had hypersensitive ears my whole life and wonder if there is connection to the research being done..