Free Flow Discussion about POIS

[FloppyBanana]

Hi Lauracostis,

Are you able to obtain the full report for the study:

Non-invasive Vagus Nerve Stimulation in Healthy Humans Reduces Sympathetic Nerve Activity

I can only view the abstract and if you want to get the full report you have to try one of these options:

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Thanks! FloppyB

[FloppyBanana]

This one's cheap and it's got an earplug electrode:

http://www.amazon.co.uk/Acupuncture-Medicomat-10-Electroacupuncture-Alternative-Hypertension/dp/B00EBCCU24/ref=sr_1_sc_1?s=drugstore&ie=UTF8&qid=1412854638&sr=1-1-spell&keywords=earplug+electrode

However the electrode looks the same as this one below. It looks like it's one electrode input point only and not bi-polar (positive and negative). So I don;t get how that could work unless you put one in each and the current goes between(?!)

http://www.alibaba.com/product-detail/Medical-tens-accessories-ear-acupoint-electrode_2023184165.html

I think we need pos and neg electrodes. I found this one which can be used for "electro sex" (so when you done with it you can clamp it on your partners nipples. That sounds like great value to me!:-)

http://www.ebay.co.uk/itm/Bi-Polar-clip-electrode-for-fetish-CBT-electro-play-TENS-ErosTek-E-Stim-/331341465888?pt=UK_HealthBeauty_Other_RL&var=&hash=item4d257d8920

Goodness me, you wouldn't believe (or perhaps you would) what else I cam across looking for "ear electrodes". BDSM electro stuff!
FloppyB

[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

Hi Dr L,

I am curious know how come you got a price in USD? That works out at about 2.5K GBP, ouch!

It seems your first link doesn't work for me so I repost this one:

http://www.leeds.ac.uk/news/article/3572/tickling_your_ear_could_be_good_for_your_heart

Thanks FloppyB

Hi Floppy B, sorry the price is in Euros not the US dollar.  4000 Euros is what I heard it costs, I cant confirm this because the price is not listed on companies website. 

[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

There is a reason that Dr, Komisaruk has been approved by the IRB. and that it took so long. These approvals aren't taken lightly, and they have, more than anything, our safety in mind.

Approved TENS devices are approved for specific applications. I imagine it could be very dangerous to use a device that is used for pain mitigation in joints and muscles for a delicate procedure like vagus nerve stimulation. Most TENS devices have "programs" and protocols, and specific electrode configurations. Some applications are "simple", others are very complex.

What make the TENS unit useful for any application, is the combination of factors that make it up. Most of these are controlled by firmware (internal software), but ultimatley come from medical expertise, research and knowledge.

I really don't care which unit Dr. Komisarul will use. If he uses the cheapest he can find, I don't have a problem, it's his knowledge in the choice and application, that I trust.

He has been doing this work and using devices like this for longer than any of us here. He is doing it in combination with careful study of the supposed patient (subject) and careful follow-through, which even includes an fMRI. Most cheap units don't come with an fMRI.

It's Dr. Komisuruk's protocol and follow-through that interest me.

Sorry Daveman, my post was not an attack on Dr. Komisuruk's protocol for the study.  The Nemos is what I would use if I was doing the study and could get them.  I just posted this because the Nemos is only available in 3 countries, and if using the Nemos in Dr. Komisuruk's study turns out to be beneficial to POIS, you won't be able to get one.  If in the future, Nemos is approved for use in the U.S., you will have to pay cash for it unless you have refractory seizures.  Daveman, you are correct that it is not a good idea to use the back or shoulder massage setting on a TENS device to stick on your ear.  You have to research the device to make sure it has a manual settings besides automatic programs.  Furthermore, the standard 2X2 inch electrode pads used for TENS units won't be very useful.  I was simply trying to find an alternative to Nemos if this study proves vagal stimulation successful in the study.

[Andy451]

Totally unrelated-

I was thinking of my situation w/ my girlfriend right now, and this is what it is like for a POIS afflicted man to try to successfully mate sometimes: Must watch this nature video...

https://www.youtube.com/watch?v=KYp_Xi4AtAQ

It seems to be true. We would sacrifice our health for women; where does it end? Love this video.

[demografx]

For those of you who have long-suspected thoughts of oxytocin and it's role in POIS:
http://www.capitalotc.com/oxytocin-the-love-hormone-controls-sexual-behavior-through-brain-cells/24004/

[FloppyBanana]

I thought the below link interesting. It says: "In Hippocrates? time, around 450 BC, bleeding points on the posterior (mastoid) surface of the ear were used to facilitate ejaculation, reduce impotency problem, and treat leg pain"

http://www.hindawi.com/journals/ecam/2012/786839/

FloppyB

[Nightingale]

I thought the below link interesting. It says: "In Hippocrates? time, around 450 BC, bleeding points on the posterior (mastoid) surface of the ear were used to facilitate ejaculation, reduce impotency problem, and treat leg pain"

http://www.hindawi.com/journals/ecam/2012/786839/

FloppyB

This is a really interesting article. All this about the ear is blowing my mind! So bizarre, yet well researched!

[demografx]

Nightingale, my sentiments exactly!

[FloppyBanana]

Guys,

I know this is only a speculative comment but my curiosity and my patients is running a but wild. On the Cerbomed website I found the below study. Thus Prof. Komisaruk knows the Nemos devise very well. The interesting point for me was that the sham subjects had the ear lobe stimulated and it turned out it had reverse effect: "That is, concha stimulation strongly deactivated hippocampal activity, whereas earlobe stimulation activated it."

http://www.cerbomed.com/upload/Poster_fMRI_evidence_Komisaruk.pdf

I bought a tragus electrode and advised my Doctor. Its the same one as below article"tickling_your_ear_could_be_good_for_your_heart" . From what I can see from pictures the auricular branch of the vagus nerve splits into two when it gets to the ear (tragus and concha) http://www.leeds.ac.uk/news/article/3572/tickling_your_ear_could_be_good_for_your_heart

It didn't relieve my POIS though on the first time I tried it. Actually feel quite disappointed about that. Will continue to do some testing in the future (under safe parameters!)

FloppyB

[demografx]

I'm sure you agree that no one has promised that any tVNS - Cerbomed or otherwise - will work on POIS.

[FloppyBanana]

Agreed!

[Daveman]

Guys,

I know this is only a speculative comment but my curiosity and my patients is running a but wild. On the Cerbomed website I found the below study. Thus Prof. Komisaruk knows the Nemos devise very well. The interesting point for me was that the sham subjects had the ear lobe stimulated and it turned out it had reverse effect: "That is, concha stimulation strongly deactivated hippocampal activity, whereas earlobe stimulation activated it."

http://www.cerbomed.com/upload/Poster_fMRI_evidence_Komisaruk.pdf

I bought a tragus electrode and advised my Doctor. Its the same one as below article"tickling_your_ear_could_be_good_for_your_heart" . From what I can see from pictures the auricular branch of the vagus nerve splits into two when it gets to the ear (tragus and concha) http://www.leeds.ac.uk/news/article/3572/tickling_your_ear_could_be_good_for_your_heart

It didn't relieve my POIS though on the first time I tried it. Actually feel quite disappointed about that. Will continue to do some testing in the future (under safe parameters!)

FloppyB

Hi Floppy,

I have played around a little bit, although of course, nothing any where near scientific! Since I don't have time to go looking for a TENS unit, and actually, probably wouldn't feel comfortable using one without medical scrutiny, I've used manual methods.

I've always had success controlling arrythmias with vagus stimulation around the carotid artery.

In the first instance, I attempted scratching the "concha" with a small piece of stick, like an extended fingernail shape. Both individual ear and stereo. The stimulation period was short, (1 min), so maybe not enough to really do much. I didn't notice any immediate effect, but it did seem to kick in after about 5 minutes. Doesn't seem to last too long however.

The effect, not being immediate, I dropped it, forgot about it, But after those 5 min or so, I realized that the POIS symptoms wee almost gone. As I said, didn't really last too long. Further testing had similar results, and to produce anything worthwhile, required a LOT of stimulation. Realize of course nothing like optimum conditions.

But I tried something that seemed to work a fair bit better. If I look at pictures of the vagus nerve, they don't seem to go exactly where I stimulated, but there is definately an effect. Similar to that which I get with vagus stimulation for arrythmias.

First when I stimulate for arrythmias, I message arround the carotid/jugular and inner clavicle. This is almost instantaneous and levels out heart rythms immediately.

So my stimulation for POIS is in the center of the chest a circle of about 15 to 20 cm. I just scratch the area starting from the inner clavicle and down to the base of the hollow in the chest. There's sort of a warm calming feeling the radiates out and through the upper torso. I further massage along and below each clavicle.

I swear it gives me at least a temporary relief from several of the symptoms. It takes away the sickly feeling, stabilizes the heart and lends an overall feeling of calming feeling. The calming feeling seems to reduce tension and stress over the whole POIS situation. The effect is about 15 minutes from a short 1 minute stimulation.

In both instances further stimulation extends the relief, but perhaps to a lesser degree. To have constant relief, I don't know. one might feel more bother from stimulation than from POIS.... I haven't taken it to that level, and perhaps there are techniques that optimze the stimulation etc. etc.

Nothing very scientific, and really perhaps not enough "testing" to be anywhere near conclusive.

BTW, I think that if it can be shown that this stimulation has effect in the brain, and produces "some" albeit temporary relief, that this could be a major breakthrough in highlighting, directing further studies. It would be something medically concrete.

[FloppyBanana]

Thanks for sharing that Daveman.
FB

[Colm]

Thanks Daveman,

It seems like the vagal nerve stimulation might have something in common with the (Dr.) Callaghan technique, also known as thought field therapy, emotional freedom technique or tapping therapy.

What you are suggesting has been giving you some relief is a part of the tapping sequence technique that I have found beneficial also for quite a long time, using it to reduce stress, feelings of depression and to dissolve some negative emotion.

A little bit about it here for anyone interested http://en.m.wikipedia.org/wiki/Thought_Field_Therapy

[Mike1234]

Hello all,

I am new to this blog and to blogging in general.  I am so glad I found this site after many years of not knowing where to turn with symptoms similar to most that have posted here.  I have tried naturalists, neurologists, urologists and general doctors and no one has ever heard of the symptoms we face!  At this point I just don't know where to turn and what to even try.  I would be open hopefully getting this group together for a phone call or something of that nature too.  I am glad we can support each other and would like to have some ideas/suggestions on where to even begin.  This is my first post so thank you all in advance for the help and most of all support.  I am glad to know that there are others who can empathize with what we all are going through.

Thanks!

[demografx]

I am glad to know that there are others who can empathize with what we all are going through.

Our MAIN strength over the years , Mike!!

[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#.

[Mike1234]

Thanks Demografx,
I appreciate your response here.  Are there any plans to get a group together on the phone or in person?  I see that daily testosterone patches have helped you out.  Did they do testing for you with that?  Just wondering where I should start with all of this. 
All the best!
Mike

[demografx]

Please look for a thread or sub-thread started here at poiscenter about people starting local POIS support groups.

***Does anyone else here remember where that was posted??***

I asked a university endocrinologist to do a full hormonal workup, which revealed significantly low free testosterone. That seemed to be the main culprit in my POIS.