Author Topic: The Polyvagal Theory  (Read 46165 times)

joelawerence

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Re: The Polyvagal Theory
« Reply #20 on: February 02, 2016, 09:47:31 AM »
Has anyone in the US tried this? It seems to activate the vagus nerve to release dopamine.

http://futurism.com/this-startup-gets-you-high-on-dopamine-no-exercise-required/
33 years old, POIS for around 12 years with increasing severity.
Major symptoms - Severe fatigue, back pain, unrefreshed even after 9+ hours sleep, pain behind eyes, very dry face, bald head with inflamed scalp, digestion issues and constipation. Very low testosterone and high glucose in blood tests

joelawerence

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Re: The Polyvagal Theory
« Reply #21 on: February 02, 2016, 10:39:51 AM »
Quantum, that is incorrect. First off CAP is a very new finding and not very established. It's a very general finding that links the autonomic system with the immune system. Dysautonomia illness has the most autonomic dysfunction out of all illnesses combined. I know thousand with the disease and they don't all have immune problems of any kind. Some have very severe parasympathetic dysfunction too. Cholinergic means acetycholine or parasympathetic chemical transmitter. In many people with dysautonomia they have co existing autoimmune illnesses. And dysautonomia currently is being studied right now as a stand alone autoimmune illness that affects autonmic receptors.

In any case you can't have vagus problems and only have pois symptoms. It woldn't make sense at all in any way no matter what crack pot scientist tries to explain it. The vagal nerve interacts with the heart, veins, lungs and would cause symptoms that pois people are simply not reporting at all.

Does POIS cause autonomic dysfunction? In my case not directly, yet I have severe autonmic dysfunction. Does POIS cause autoimmune type of problem, I believe so. Can autoimmune inflammation type of probems affect the autonomic nervous system. I believe I am living lroof of that. I think after year of inflammation it eventually got into my autonomic nerves. Do all pois people get dysautonomia, I dont know any! Do all dysautonomia people get pois, out of the thousands I know none else have pois.

Most likeley pois is an autoimmune illness of sorts in that the allergic response we get to O is triggerring autoimmune type of inflammation or attacks. Possibly it is a vasculitis inflamming our veins which reach into our brains and throughout all our organs. Or through another pathway like the lymphatic sysmptom.. The Poly Vagal Theory is a classic case of twist reality to conform whatever a person wants. They mix in some real stuff and it sounds terrific but in reality that is only to an untrained person. I wish it was true but it's not. Sorry

The truth is no one knows what exactly causes POIS symptoms. All we are doing is trying to view it through different lenses from a layman perspective with whatever information is out there in the internet. From what I have read in the internet the Vagus nerve is a large part of the autonomic nervous system (especially the parasympathetic path), so what let?s you believe that the vagus nerve is not involved in your Dysautonomia condition? Also your symptoms seem to be different to typical POIS categories and you also have pretty bad symptoms, which suggests to me that there is more than POIS in play in your case?

The allergic reaction to ejaculation/semen is the biggest BS out there. I have no allergy to any allegens and still have a bad case of POIS.

There could still be a case of this being an auto-immune condition but the reaction would not be to the semen but to some other enzyme produced by the body.
33 years old, POIS for around 12 years with increasing severity.
Major symptoms - Severe fatigue, back pain, unrefreshed even after 9+ hours sleep, pain behind eyes, very dry face, bald head with inflamed scalp, digestion issues and constipation. Very low testosterone and high glucose in blood tests

Quantum

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Re: The Polyvagal Theory
« Reply #22 on: February 02, 2016, 01:09:36 PM »
Quantum, that is incorrect. First off CAP is a very new finding and not very established. It's a very general finding that links the autonomic system with the immune system. Dysautonomia illness has the most autonomic dysfunction out of all illnesses combined. I know thousand with the disease and they don't all have immune problems of any kind. Some have very severe parasympathetic dysfunction too. Cholinergic means acetycholine or parasympathetic chemical transmitter. In many people with dysautonomia they have co existing autoimmune illnesses. And dysautonomia currently is being studied right now as a stand alone autoimmune illness that affects autonmic receptors.

In any case you can't have vagus problems and only have pois symptoms. It woldn't make sense at all in any way no matter what crack pot scientist tries to explain it. The vagal nerve interacts with the heart, veins, lungs and would cause symptoms that pois people are simply not reporting at all.

Does POIS cause autonomic dysfunction? In my case not directly, yet I have severe autonmic dysfunction. Does POIS cause autoimmune type of problem, I believe so. Can autoimmune inflammation type of probems affect the autonomic nervous system. I believe I am living lroof of that. I think after year of inflammation it eventually got into my autonomic nerves. Do all pois people get dysautonomia, I dont know any! Do all dysautonomia people get pois, out of the thousands I know none else have pois.

Most likeley pois is an autoimmune illness of sorts in that the allergic response we get to O is triggerring autoimmune type of inflammation or attacks. Possibly it is a vasculitis inflamming our veins which reach into our brains and throughout all our organs. Or through another pathway like the lymphatic sysmptom.. The Poly Vagal Theory is a classic case of twist reality to conform whatever a person wants. They mix in some real stuff and it sounds terrific but in reality that is only to an untrained person. I wish it was true but it's not. Sorry

Hi Disaster,

I am sorry to have read in other threads that you have a very severe case of POIS, as well as two auto-immune illnesses on top of that.  I wish you to find relief for all of your conditions, as soon as possible.  Also, iI is totally ok that you do not agree with the Polyvagal theory and the new findings about the CAP.  However, even if you experience much pain, and that it can make you edgy, and even if you do not agree with the Polyvagal Theory and about CAP, that does not justify you saying things like " It woldn't make sense at all in any way no matter what crack pot scientist tries to explain it." and "The Poly Vagal Theory is a classic case of twist reality to conform whatever a person wants. They mix in some real stuff and it sounds terrific but in reality that is only to an untrained person" . Let me remind you of the first community guideline of the poiscenter forum:  " Be nice and supportive: POISCenter works because we support and care for one another. Be nice, and be supportive. Do your best to respect  differing points of view."  ( (http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259 ). All members here are suffering from POIS.  They have gathered $33 000 in order to found a study on POIS, which is a great accomplishment in itself.  It happens that the ongoing Rutgers study, the one you wanted to be part of, is partly based on the Polyvagal theory and the role of the vagal nerve in POIS, and the researchers leading it have a positive perception of the Polyvagal theory, and part of the study experimental design is based on it.  NORD, a very respectable organization, have chosen the Rutgers team study among the all the POIS study projects they have received, as the most valuable one. So, even if your do not agree with this, I invite to voice your opinions with more respect, as they are not facts, but opinions. Simply explain that you do not agree, and why, and what is your own opinion.  And, keep an open mind, and a friendly attitude, being aware of the potential emotional and relational effects of what you express, and, importantly, of the words you choose to express it.

As Jowlawerence have just written in his post to you, the truth is no one knows what exactly causes POIS symptoms.  I have no problems that you have clear ideas about what POIS is not and what it may be.  We share our ideas, whatever they are.  No one here can claim to be an authority on POIS, and it is better to share what you think about POIS for what it is, that is, hypothesis.  You can also share what has been working - or not - for you. That's ok if you know a lot about neurology and immunology, and it is of great value if you share here what you know and how it relate to POIS. 

As I said in the first post of this thread, I have opened it so all members can get at least a minimum of knowledge about the Polyvagal Theory, so we all have a better understanding of the results of the study, when they will be out.  I, personally, knew almost nothing about this theory up to a few weeks ago, it didn't know neither about the Cholinergic Auto-Immune Pathway  ( but I did know for a long time about HRV).  So, this is a thread to get familiar with PVT, CAP, and all things related, and, hopefully, share our ideas on how they can help understand POIS pathophysiology. It is in no way an attempt of mine to prove - or not - that the Polyvagal theory or the CAP are THE way to go in order to solve the POIS problem.   We are only in the process of getting to know more about it, and see what it can bring as a benefit for us POIS sufferers, and, prepare to get the most out of the study results the members have paid for.

This thread is neutral, as I am, about the value of PVT and CAP.  As a matter of fact, my current take on the pathophysiology of POIS does not include PVT elements or CAP, as I am just currently getting to know these better.  I have already express my views elsewhere on this forum, and my hypotheses about POIS are still a "work in progress" (If interested, see http://poiscenter.com/forums/index.php?topic=2078.msg16431#msg16431  for more info of my personal, current views on POIS pathophysiology ) .    You can go ahead and do the same and start your own thread, where you can propose your own hypothesis about the pathophysiology and treatment of POIS.

We are all here, together, to do our best with the information we have, and from our empirical successes and fails.  Slowly but surely, I am sure we will solve the POIS puzzle.  In the meantime, I wish you will find ways to get some relief for your POIS symptoms, Disaster.
« Last Edit: February 02, 2016, 01:24:23 PM by Quantum »
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

Stef

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Re: The Polyvagal Theory
« Reply #23 on: February 02, 2016, 08:47:21 PM »
Disaster,

It's obvious that you're suffering, but so is every other forum member here.

As Quantum stated, this forum has rules that must be followed. Those rules make this a valuable, safe, respectful and RESPECTED forum.

So, to repeat Quantum's recommendation, please review the forum rules. Especially note:
"Be supportive. Poiscenter works because we support and care for one another. Be nice, and be supportive. Do your best to respect differing points of view."

The general rule of thumb about posts on this forum is -- if your comment generates more heat than light, don't post it. Offensive comments will be removed by the moderators.

Stef

Disaster

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Re: The Polyvagal Theory
« Reply #24 on: February 03, 2016, 03:31:19 AM »
Let me just say this is a forum and as such words can get interpreted as more offensive then they were meant to be, Notice my wording was generalized and not attacking any particular memeber. Poly Vagal is not a theory created by anyone in this group. People might believe in it but my words can only be directed to the theory and it's creators. Its a problem I see that sick people are prayed upon all the time with new theories. Half of snopes are crack pot health and illness theories. Once the creators convice a person of it's validity it's almost impossible to convince you otherwise.

I never meant that vagal problems were not the root of my dysautonomia. What I meant and I thought I said it clearly was that with vagal dysfunction there are proven symptoms and none of which are associated with the symptoms of POIS. It's as simple as that. Oesn't matter if it was chosen by NORD, NIH or any other group. There are a million studies on a million illnesses that sometimes go down the wrong path. I'm happy to test out Vagal Nerve Stimulation because they are currently testing it for dysautonomia at one of the best autonomic labs in the country Vanderbilt University https://clinicaltrials.gov/ct2/show/NCT02281097  Infact years ago I was the first person to mention the idea on a dysautonomia forum that Vanderbilt monitors. So I know what the vagus nerve controls, I know what the effects of stimulations does it is just not possible it is the main problem in pois. I wish it was. If it offers any jind of relief that is awesome and like I said I am willing to try almost anything and I have. I have also taken Mestinon which is a Muscarinic parasympathic medicine. I have alos take Choline and other acetycholine supplements. They don't help not even a little.

Stef do you have POIS. How did you become a moderator of this forum? Is it just an administrative this for you? Just curious? I haven't met any women with POIS yet. Having this illness and sufferring like we do creates a passion for dealing with this illness. I am the most supportive person you will ever meet. This wasn't any issue of being supportive, this was a debatable issue. i was debating it. Simply voicing my opinion which happened to be different. So I could say the same about "doing your best to support differing views" mine is also differing...i did not say anything offensive about Quantum. No adjectives were directed toward anyone on the forum.
POIS sufferer for over 3 decades. Has progressively gotten worse over the years and I became completely disabled around 2011. My case of POIS is very severe.

demografx

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Re: The Polyvagal Theory
« Reply #25 on: February 03, 2016, 11:42:26 AM »
It woldn't [sic] make sense at all in any way no matter what
crack pot scientist tries to explain it. The vagal nerve...
To whom are you referring?


Edit>>>From our Community Guidelines:

"[Prohibited behavior]...includes derogatory remarks, attacks, or threats against POISCenter or POISCenter partners. "


« Last Edit: February 07, 2016, 07:20:25 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: The Polyvagal Theory
« Reply #26 on: February 03, 2016, 12:10:53 PM »
Stef do you have POIS. How did you become a moderator of this forum? Is it just an administrative this [sic] for you? Just curious? I haven't met any women with POIS yet.

Having this illness and sufferring like we do creates a passion for dealing with this illness.
This is borderline *ad hominem ! After years of intimate involvement with POIS research, Stef was very warmly INVITED here because of her incredible passion as a medical practitioner and researcher who SINGLEHANDEDLY moved us from The Dark Ages of POIS into the world of scientific research on rare disorders! Without her, we would still be debating whether or not arugula can cure POIS!

You just might owe her an apology, Disaster.


*prohibited here, per forum rules, as Quantum & Stef already pointed out to you:
http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259


« Last Edit: February 07, 2016, 10:42:56 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

Daveman

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Re: The Polyvagal Theory
« Reply #27 on: February 03, 2016, 01:12:08 PM »
The main reason for this forum was to move away from conjecture and begin solid expert medical research.

One may think that an afflicted individual of any rare disease (or condition)  would be the best to analyze and evaluate its inner workings:
"it feels like such and such so the remedy must be the same". NOT!

An afflicted individual, likely even an expert afflicted individual could well be improperly swayed by "how he feels".

There are just too many medical anomolies that feel alike but have completely differing solutions. Unless the specific controlled tests  are done no-one can say "it's not possible that..." or "you can't have a vagal problem and only have POIS" etc.

Has such been proven? It may "feel like it", but what underlying elements may exist that "could" produce the just POIS result.

No one here has the credentials to make outright declarations about POIS.

We "hired" a highly qualified professional to study POIS. Is he on the right path? We still don't know, but his professionalism will produce results which should shed deeper light on the subject.

If he says it is vagal such will be supported by medical fact, whether it's direct or indirect, or not at all. Of course we hope that his results show as much positive potential as possible, but as far as I'm concerned, anything that he produces will be better than ANY of our guesswork.

I invite the member to understand that noone knows what POIS is or isn't. Take what you hear with a grain of salt, and remember, how it feels isn't necesarily how it is. Noone here has the knowledge or facts enough to make outright afirmations.

Well maybe you could get away with saying POIS doesn't effect the color of the sky.... although sometimes it seems like it. :)

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: The Polyvagal Theory
« Reply #28 on: February 03, 2016, 03:11:57 PM »
Well said, Daveman!
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: The Polyvagal Theory
« Reply #29 on: February 04, 2016, 12:39:11 AM »

Has anyone in the US tried this? It seems to activate the vagus nerve to release dopamine.

http://futurism.com/this-startup-gets-you-high-on-dopamine-no-exercise-required/
Interesting, joelawerence!

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

b_jim

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Re: The Polyvagal Theory
« Reply #30 on: February 04, 2016, 03:39:01 AM »
I have not read all yet but the picture with the electric battery makes me think to something.

It's like if we have an abnormal residual activity after ejaculation in the vagus nerve. Maybe this activity use neurotransmitters  like dopamine/acetylcholine ant it may cause a deficiency after day 2 (which is often the worst for many Poisers).
We have problem to TURN OFF the nerve after ejaculation. And the multiple "remedies" we try are more or less solutions to turn off more quickly.
I say this because I sleep much better with taurine, I feel less nervous activity like restless legs after orgasm.


I have another idea but its not easy to explain. Ejaculation and orgasm are two different things. And I wonder which is the culprit. I think it's possible to have powerful orgasm or on the contrary, mechanical/automatical ejaculation.

Taurine = Anti-Pois
Suffering from lyme disease

demografx

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Re: The Polyvagal Theory
« Reply #31 on: February 05, 2016, 01:04:46 PM »

We have a problem to TURN OFF the [vagus] nerve...



Interesting perspective, b_jim!!






« Last Edit: February 06, 2016, 02:05:23 AM 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

Prancer

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Re: The Polyvagal Theory
« Reply #32 on: February 07, 2016, 02:16:10 AM »
Good idea b_jim, all the info involving the vagus nerve really does seem very promising, and it feels like the best we've come so far in figuring this out. :) I always read something new about the vagus nerve that surprises me, and I'm always amazed and excited about the potential implications it has for us! It's really a great position we're in right now with vagus nerve being the big focus.

demografx

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Re: The Polyvagal Theory
« Reply #33 on: February 07, 2016, 02:11:22 PM »


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: The Polyvagal Theory
« Reply #34 on: February 07, 2016, 02:15:20 PM »
Good idea b_jim, all the info involving the vagus nerve really does seem very promising, and it feels like the best we've come so far in figuring this out. :) I always read something new about the vagus nerve that surprises me, and I'm always amazed and excited about the potential implications it has for us! It's really a great position we're in right now with vagus nerve being the big focus.
Well said, Prancer!
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: The Polyvagal Theory
« Reply #35 on: February 07, 2016, 06:31:54 PM »
Article: "Transcutaneous Vagal Nerve Stimulation (tVNS): a new neuromodulation tool in healthy humans?"
February, 2015
Frontiers in Psychology
Cognition
http://journal.frontiersin.org/article/10.3389/fpsyg.2015.00102/full

Mentions Cerbomed tVNS device we discussed extensively in another thread. If you know the link please post :)


« Last Edit: February 07, 2016, 09:11:35 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: The Polyvagal Theory
« Reply #36 on: February 07, 2016, 06:53:12 PM »



http://www.redpilllife.com/blog/holy-vagus-this-nerve-does-what/


Interesting read, but skip the advertising!

- demo :)


« Last Edit: February 09, 2016, 03:29:30 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: The Polyvagal Theory
« Reply #37 on: February 08, 2016, 09:49:00 PM »


Just another ad...:)


« Last Edit: February 08, 2016, 10:06:55 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: The Polyvagal Theory
« Reply #38 on: February 08, 2016, 10:16:02 PM »
mp3 audio & transcript: Stephen Porges: The Polyvagal Theory & The Vagal Nerve –


https://www.bulletproofexec.com/stephen-porges-the-polyvagal-theory-the-vagal-nerve-264/


« Last Edit: February 08, 2016, 10:20:16 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

demografx

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Re: The Polyvagal Theory
« Reply #39 on: February 09, 2016, 12:20:24 AM »
Quantum, I hope the above doesn't duplicate anything you've already presented on Stephen Porges.


« Last Edit: February 09, 2016, 02:22:12 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