Vagus Nerve Implant

[paul80]

I am going to speak to my Neurologist about getting a vagus nerve implant for my epilepsy, and was wondering if there was any chance it might help my M.E as well.

Has anyone here used one and can tell me if it helped them?

Or does anyone know of any good studies on these implants used on people with M.E? if so can you give me links please?

I tried to find some, but there is so much on the internet about it and my vision has got so bad and blurry i can't read a lot, I found websites saying it could help but the neurologist will probably not care what i say about that unless there is proper evidence.

 

[wabi-sabi]

I think there was a recent article on a vagus nerve implant on Healthrising.

 

[Diwi9]

I have dysautonomia that can be triggered by random things. I am interested to learn how stimulating the vagus nerve might affect signals. I can get super cold appendages, but going into a hot bath then exacerbates POTS. Hopefully someone with experience with a vagus nerve stimulator can give some insight. I'm hopeful for interventions outside of pharmaceuticals.

 

[paul80]

I could only find an article on health rising in 2016. No completed studies though from that article. But it says:
"
Reduced heart rate variability findings suggest that reduced parasympthetic nervous system functioning is present in both ME/CFS and FM. Reduced HRV has been associated with increased sympathetic nervous system activity, pain and sleep and cognitive problems in ME/CFS and/or FM.

Because VNS increases heart rate variability it’s possible that besides reducing pain it could also improve sleep and cognition.
"
I could really do with help with sleep and cognition so this gives me hope.

 

[Hipsman]

You could try non-invasive VNS device first, check out 4th and 5th page of this thread.

 

[Jyoti]

Kevin Tracey, MD, (Feinstein Institute) was the keynote speaker at the recent Dysautonomia International conference. He did NOT speak to dysautonomia or ME/CFS much if at all, so I was a bit confused about why his presentation was given such precedence.

He did discuss some wildly successful uses of an implanted vagus nerve stimulator -- a couple of case studies only as I recall--for treating rheumatoid arthritis and IBD or Crohn's.

His company is working on developing approved devices for wider use, as are a number of other outfits. I found the idea of non-pharmaceutical interventions fascinating, and hope that his participation in the DI conference might have sparked his interest in looking at how to apply bioelectronics for those of us with other likely vagus-nerve related challenges.

Here is a link to Cort's coverage of his talk: https://www.healthrising.org

 

[paul80]

You could try non-invasive VNS device first, check out 4th and 5th page of this thread.

Thanks, i'll have a look, or a listen, i started using an addon for firefox that reads the text out it's great if you have trouble reading.

 

[paul80]

I spoke to my neuro, she doesn't have a clue about the VNI but she has referred me to an Epilepsy expert, so i'll speak to him in about 3 weeks.

 

[paul80]

I went off the idea of getting the implant. Seems too risky to have an operation. I decided to buy a tVNS called Parasym. Just started it a few days ago but need to find the correct settings and when to use etc. Going to be hard to determine what works when i already have such fluctuating symptoms.

 

[Aurelius]

I would love to read an update on this every now and then from you if it would be possible

 

[paul80]

I'll try and remember my memory is so bad at the moment, feel almost senile on the anti epilepsy pills. I'm going to start on the default settings for a few weeks, maybe a month and see how it goes. Feel free to tag me if i don't post back here.

 

[Aurelius]

@paul80

 

[paul80]

Not noticed anything significant so far but hard to tell as i've going through a lot of changes. Stopped epilepsy pills which has had big impact. But i'm going to keep using it, think it'll take longer tell. Also i use it once a day and i know someone who uses it 3 times a day and finds it very helpful, so i may try using it more often.