Author Topic: Taking VNS trials into our own hands  (Read 5772 times)

Curepois

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Taking VNS trials into our own hands
« on: May 03, 2016, 12:01:52 PM »
Hey POIS forum, this is my first post, although I have been keeping up with this forum and POIS developments for well over a year now.  Haven't had anything to contribute to the discussion until now, thanks to the hard work of Quantum and many others who were way ahead of me in terms of understanding POIS.

The reason I decided to join POIS forum is out of disbelief with the 3rd interim report for the POIS study.  It's like they set us up on a cliffhanger with the potential of VNS in the 2nd report, and then just spectacular failed in following it up with anything meaningful in the 3rd report.  Seriously, a survey of POIS symptoms that took a month to peer review?  POIS forum could have done that in a week.  I trust that Dr. Komisaruk is making progress on understanding and treating POIS, but I think many of us find the pace of the study and the reporting of the results very disappointing.

The final interim report will likely not be released for 6 months to a year, and then probably a couple months to peer review, and I know that timeframe is unsatisfactory for everyone on this forum, especially when we have a promising treatment for POIS that is becoming more and more accessible.  There is one VNS stimulator that I am particularly interested in, and was surprised to see zero posts about it on this forum.

From the "Nervana" VNS stimulators website
http://experiencenervana.com/technology-vagus-nerve-stimulation/
NERVANA combines science and technology to make an ordinary experience extraordinary. NERVANA has the potential to revolutionize the music industry by being the only company offering a non-invasive, consumer Vagus nerve stimulator that synchronizes with music.

Until you read into the device, this doesn't sound exactly like what we're looking for, but it performs the job of stimulating the VNS and has several advantages that come from it not being specifically designed for medical use.  The biggest advantage is accessibility; it is available for preorder now and will ship in a month, and while it is too expensive for me right now, the $300 price tag is very reasonable.  While it is designed to synchronize the vns stimulation with music, it can be programmed to stimulate at other frequencies.  Since we do not have a procedure for treatment with vns yet, this could prove to be a benefit, since long periods of vns stimulation may be required.  If this is the case, this device would be perfect because it is small, portable, and to the outside world using it would just look like you are listening to music.  It is safe and has been used on hundreds of adults.  If anyone has the money to preorder it, it could significantly reduce POIS symptoms and your experiences with it would greatly help out everyone on POIS forum.




FloppyBanana

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Re: Taking VNS trials into our own hands
« Reply #1 on: May 03, 2016, 03:20:44 PM »
I already seen this. I wonder why the device does not need FDA approval. They can't sell the cerbomed tVNS device in the US yet because it doesn't have that approval. To be frank this seems too good to be true. Great of you can prove me wrong!
30 years of POIS. Mytelase after O with Iceman breathing technique.

demografx

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Re: Taking VNS trials into our own hands
« Reply #2 on: May 03, 2016, 03:40:54 PM »
Curepois, welcome to our POIS forum!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

certainlypois2

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Re: Taking VNS trials into our own hands
« Reply #3 on: May 03, 2016, 07:21:08 PM »
Hey POIS forum, this is my first post, although I have been keeping up with this forum and POIS developments for well over a year now.  Haven't had anything to contribute to the discussion until now, thanks to the hard work of Quantum and many others who were way ahead of me in terms of understanding POIS.

The reason I decided to join POIS forum is out of disbelief with the 3rd interim report for the POIS study.  It's like they set us up on a cliffhanger with the potential of VNS in the 2nd report, and then just spectacular failed in following it up with anything meaningful in the 3rd report.  Seriously, a survey of POIS symptoms that took a month to peer review?  POIS forum could have done that in a week.  I trust that Dr. Komisaruk is making progress on understanding and treating POIS, but I think many of us find the pace of the study and the reporting of the results very disappointing.

The final interim report will likely not be released for 6 months to a year, and then probably a couple months to peer review, and I know that timeframe is unsatisfactory for everyone on this forum, especially when we have a promising treatment for POIS that is becoming more and more accessible.  There is one VNS stimulator that I am particularly interested in, and was surprised to see zero posts about it on this forum.

From the "Nervana" VNS stimulators website
http://experiencenervana.com/technology-vagus-nerve-stimulation/
NERVANA combines science and technology to make an ordinary experience extraordinary. NERVANA has the potential to revolutionize the music industry by being the only company offering a non-invasive, consumer Vagus nerve stimulator that synchronizes with music.

Until you read into the device, this doesn't sound exactly like what we're looking for, but it performs the job of stimulating the VNS and has several advantages that come from it not being specifically designed for medical use.  The biggest advantage is accessibility; it is available for preorder now and will ship in a month, and while it is too expensive for me right now, the $300 price tag is very reasonable.  While it is designed to synchronize the vns stimulation with music, it can be programmed to stimulate at other frequencies.  Since we do not have a procedure for treatment with vns yet, this could prove to be a benefit, since long periods of vns stimulation may be required.  If this is the case, this device would be perfect because it is small, portable, and to the outside world using it would just look like you are listening to music.  It is safe and has been used on hundreds of adults.  If anyone has the money to preorder it, it could significantly reduce POIS symptoms and your experiences with it would greatly help out everyone on POIS forum.

Lets wait, we are not 100% sure about if it helps or not. If it does help we don't know the proper procedure.

demografx

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Re: Taking VNS trials into our own hands
« Reply #4 on: May 03, 2016, 07:26:23 PM »


Good point, CP2!

Also I might owe u an apology about disagreeing w/your prediction that the final report [publication actually] will reveal most of the goodies, prolly not before!

:( <<<<<<<<<<<< naive??


« Last Edit: May 03, 2016, 08:15:16 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Quantum

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Re: Taking VNS trials into our own hands
« Reply #5 on: May 04, 2016, 06:53:26 AM »
Thanks for you good words, Curepois, and welcome to the forum.

About the 3rd interim report, do not forget that NORD has received much more data and results than we had through the public section of the report.  It is my opinion that they keep the best for the final article.   There is this kind of keeping the secret, in the research field, I think.  They do not won't anybody else mentioning anything about their results in another article that would be out before their own.

If you do decide to buy the device, let us know what results you get with it.  Hopefully, the final article will give detailed instructions about the exact VNS method that has been used in the study so it will be a good starting point for those who will buy VNS devices.

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

certainlypois2

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Re: Taking VNS trials into our own hands
« Reply #6 on: May 04, 2016, 12:35:50 PM »


Good point, CP2!

Also I might owe u an apology about disagreeing w/your prediction that the final report [publication actually] will reveal most of the goodies, prolly not before!

:( <<<<<<<<<<<< naive??

definitely no apologies needed, you made a good point

demografx

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Re: Taking VNS trials into our own hands
« Reply #7 on: May 04, 2016, 04:54:52 PM »
Just-an-example scenario:

Maybe POISCenter can contract with (someone like) Radio Shack - before they go under - to makes us a customized TENS unit (cheap!!) and then we can all share it by...POISmail! [POISer #1 snail mails device to POISer #2 - after using it :) - then #2 goes to #3, etc.]

Let's just all not have POIS at the same time! ;D


https://consumerist.com/2015/10/01/judge-approves-final-plan-for-radioshack-bankruptcy/

http://appadvice.com/appnn/2015/12/radio-shack-offers-steep-discount-on-apple-tv-and-hdmi-cable

More current Radio Shack news:
http://bizbeatblog.dallasnews.com/2016/04/radioshack-names-second-ceo-since-scaled-down-chain-plucked-from-bankruptcy-year-ago.html/


WARNING: let's wait for final Rutgers publication of our POIS study to see if & how tVNS works!





« Last Edit: May 05, 2016, 11:27:46 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Taking VNS trials into our own hands
« Reply #8 on: May 04, 2016, 05:58:07 PM »
Also, if tVNS works for POIS, why not lobby to have regional medical centers buy the unit?

Mat780's POIS Worldwide map (needs updating!) would help convince local hospitals/urgent care centers/doctors, etc.:

https://sites.google.com/site/poiswebsite/pois-map


« Last Edit: May 04, 2016, 09:33:50 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Taking VNS trials into our own hands
« Reply #9 on: May 04, 2016, 09:07:16 PM »

Or build our own???
http://m.instructables.com/id/Build-A-TENS-Machine-to-Remove-Pain/

WARNING: let's wait for final Rutgers publication of our POIS study to see if & how tVNS works!



« Last Edit: May 05, 2016, 11:27:24 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Taking VNS trials into our own hands
« Reply #10 on: May 04, 2016, 10:22:09 PM »
And we can investigate all kinds of odd devices (example below).

I know, guinea pigging is a tough job, but somebody's gotta do it. :)




WARNING: let's wait for final Rutgers publication of our POIS study to see if & how tVNS works!






« Last Edit: May 05, 2016, 11:25:43 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Taking VNS trials into our own hands
« Reply #11 on: July 22, 2016, 12:15:32 AM »



I just snapped this while at my pharmacy checkout counter today.

I bet that Quantum knows more about this.

This one's $49.95.

Wouldn't it be great if at some time in the future, a POIS treatment could be this easy??

Just dreaming :)


WARNING: let's wait for final Rutgers publication of our POIS study to see if & how tVNS works!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Quantum

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Re: Taking VNS trials into our own hands
« Reply #12 on: July 22, 2016, 09:29:23 AM »



I just snapped this while at my pharmacy checkout counter today.

I bet that Quantum knows more about this.

This one's $49.95.

Wouldn't it be great if at some time in the future, a POIS treatment could be this easy??

Just dreaming :)


WARNING: let's wait for final Rutgers publication of our POIS study to see if & how tVNS works!

Hi Demo,

TENS have been sold in pharmacies for over 10 to 15 years at the least.  They are mostly used for back pain, as seen on the box of the one you have posted a snapshot of.

Ten years ago, only people that have been introduced to TENS via physiotherapy were searching for a one.  Nowadays, people are more aware of their existence.

However, the adjustment of the 2 to 3 control knobs of a TENS is a kind of art... usually people use the setting their physiotherapist has given them.  In the case of POIS, I hope the study report will give precisions on the settings and duration that have been used in the study, as well as the trigger points used. 

We will have to see, anyway, if the range and power of what they have used in the study can be reproduced by a standard TENS device.  I guess we will have to wait until sometime in 2017 to know more about this.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: Taking VNS trials into our own hands
« Reply #13 on: July 22, 2016, 01:34:26 PM »
Thank you, Quantum!

It's an exciting, 2-pronged hope:

•that there is potential POIS relief

•that a cheap unit can be modified


« Last Edit: July 22, 2016, 01:46:23 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

mike_sweden

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Re: Taking VNS trials into our own hands
« Reply #14 on: December 30, 2021, 02:53:59 PM »
https://pubmed.ncbi.nlm.nih.gov/23790471/

about that

have you heard about pois?

https://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

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

Yes, I have heard of it and yes I do think it is related to vagus function (it sort of has to be)

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Michael VanElzakker, PhD
Instructor, Neuroscience & Neurotherapeutics
Harvard Medical School & Massachusetts General Hospital
Instructor, Tufts University

demografx

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Re: Taking VNS trials into our own hands
« Reply #15 on: December 30, 2021, 03:05:22 PM »
https://pubmed.ncbi.nlm.nih.gov/23790471/

about that

have you heard about pois?

https://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

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

Yes, I have heard of it and yes I do think it is related to vagus function (it sort of has to be)

-=-=-=-=-=-=-=-=-=
Michael VanElzakker, PhD
Instructor, Neuroscience & Neurotherapeutics
Harvard Medical School & Massachusetts General Hospital
Instructor, Tufts University


Interesting, mike_sweden!!

That’s exactly where some of our outside POIS research has been headed!!

I think we should keep it alive.
« Last Edit: December 31, 2021, 11:50:28 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: Taking VNS trials into our own hands
« Reply #16 on: December 30, 2021, 04:44:10 PM »
Yes I’ve informed VanElzakker about POIS, POIScenter and some forum threads a while ago.

Journey

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Re: Taking VNS trials into our own hands
« Reply #17 on: January 01, 2022, 09:25:30 AM »
https://pubmed.ncbi.nlm.nih.gov/23790471/

about that

have you heard about pois?

https://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

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

Yes, I have heard of it and yes I do think it is related to vagus function (it sort of has to be)

-=-=-=-=-=-=-=-=-=
Michael VanElzakker, PhD
Instructor, Neuroscience & Neurotherapeutics
Harvard Medical School & Massachusetts General Hospital
Instructor, Tufts University


Interesting, mike_sweden!!

That’s exactly where some of our outside POIS research has been headed!!

I think we should keep it alive.
We should inform about POIS medical youtubers, sexuality/health websites, sexuality education organizations all over the world and so on

It is one of the best ways to rise POIS awareness which increases interest of researchers + crowdfunding potential + amounts of POISers testing stuff

Alongside with making posts about POIS on Semen retention/nofap/masturbation/sex related communities/videos/articles/etc.

mike_sweden

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Re: Taking VNS trials into our own hands
« Reply #18 on: January 03, 2022, 05:51:22 AM »
https://pubmed.ncbi.nlm.nih.gov/23790471/

about that

have you heard about pois?

https://en.wikipedia.org/wiki/Postorgasmic_illness_syndrome

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

Yes, I have heard of it and yes I do think it is related to vagus function (it sort of has to be)

-=-=-=-=-=-=-=-=-=
Michael VanElzakker, PhD
Instructor, Neuroscience & Neurotherapeutics
Harvard Medical School & Massachusetts General Hospital
Instructor, Tufts University


Interesting, mike_sweden!!

That’s exactly where some of our outside POIS research has been headed!!

I think we should keep it alive.
We should inform about POIS medical youtubers, sexuality/health websites, sexuality education organizations all over the world and so on

It is one of the best ways to rise POIS awareness which increases interest of researchers + crowdfunding potential + amounts of POISers testing stuff

Alongside with making posts about POIS on Semen retention/nofap/masturbation/sex related communities/videos/articles/etc.

sounds good