Vagus Nerve Stimulation in Fibromyalgia and ME/CFS: A Trial of One

[Steve]

Thanks, Remy. I have no effect so I am going to wrap it up tomorrow also. Wonder what % returns they get? Must work for some with normal nervous systems. I haven't tried gargling, have nothing to lose. Cheap!

 

[mono]

Hey Remy sorry to hear that it didn't work for you. Did you try cleaning your ear first with alcohol. Men have thicker skin on their ears than women and so we need higher amounts of voltage. The software update for the next nervana will have a higher amplitude you can feel.

 

[Remy]

Hey Remy sorry to hear that it didn't work for you. Did you try cleaning your ear first with alcohol. Men have thicker skin on their ears than women and so we need higher amounts of voltage. The software update for the next nervana will have a higher amplitude you can feel.

I'm a woman! I suppose I need to put a pink bow on my profile. Hahaha!

I put alcohol in my ears several times a week because I'm paranoid about ear infections after I got one last summer.

How do you know about the software update? Do you have some inside information? Can you update the software on the unit or do you have to get a total new one? Please, do share! And welcome to the forums too!

 

[mono]

I'm a woman! I suppose I need to put a pink bow on my profile. Hahaha!

I put alcohol in my ears several times a week because I'm paranoid about ear infections after I got one last summer.

How do you know about the software update? Do you have some inside information? Can you update the software on the unit or do you have to get a total new one? Please, do share! And welcome to the forums too!

a pink bow would help lol

I pm'd you btw

 

[Cort]

Update - the VNS is not producing as tremendous results as it did at first. I expected that as that is how it usually goes with me.

It is still producing significant results though. I got lost in the desert and stumbled around for three hours in the dark. Ordinarily that would have utterly wiped me out but because I did the VNS that day it didn't that day or the next. That's the only explanation I can come up with.

Some other things - better tolerance for alcohol, better tolerance of foods, deeper breathing, calmer, remembering my dreams again for the first time in decades.


Doing it a couple of times a week for 30 minutes a shot.

 

[Grandma]

Update - the VNS is not producing as tremendous results as it did at first. I expected that as that is how it usually goes with me.

It is still producing significant results though. I got lost in the desert and stumbled around for three hours in the dark. Ordinarily that would have utterly wiped me out but because I did the VNS that day it didn't that day or the next. That's the only explanation I can come up with.

Some other things - better tolerance for alcohol, better tolerance of foods, deeper breathing, calmer, remembering my dreams again for the first time in decades.


Doing it a couple of times a week for 30 minutes a shot.

It would be good to know if you are still doing this Cort or if you have abandoned it.

 

[Lorita]

Just wanted to write and ask if anyone has tried a Gammacore device for vagus nerve stimulation? Now licensed for migraine treatment in the USA (and EU I believe). You need a doctor’s prescription to buy one.

It doesn’t work via the ear but by the neck.

I got one secondhand (I was a bit desperate!) and I have so far had around 30% improvement from day one, in both mental clarity and about 20-30% less muscle pain depending on the day. (I have ME, not fibro.)

I am on week 3 so will have to see what longer term effects it has. I use it once a day, and alternate between vagus nerve on left and right side of neck per treatment. The machine goes off automatically after 2 minutes.

From other reports of the Nervana I have read on here, the Gammacore seems to be a much stronger current. I don’t know what the current actually is but I take it up to a level where it’s pricking quite strongly, almost but not quite painful.

I have had some full on waves of tiredness after using it, but it feels like a very different non-wired, healthy tiredness that rest restores. May the result of calming down my adrenals and stress response. And the overall feeling of wellbeing made me persist, it was so worth it. But I say this as a warning in case people who are more ill and sensitive than me try this out.

Also I got very excited after the first week with the boost to my energy levels and totally overdid it, leading to a crash. The crash wasn’t as bad as normal. But it’s clear I still have to be very careful to pace still.

Gammacore sells for US$650 for a device that is pre-programmed to self destruct after a ‘use by’ date, and after 300 uses. This is ridiculous, both the price and the inbuilt obsolescence. Hopefully more affordable and rechargeable devices will made available shortly, and trialled specifically for ME/CFS.

I think the field of bioelectronics is about to explode.

I am trying to say calm about this as it's just a short term experiment so far, but it is quite promising.... I will report back again once I’ve been using it for longer. Very interested to hear anyone else’s experience.

 

[Steve]

Wow, Lorita, many thanks for your post and your guinea pigness LOL! I had exactly the same thought when I saw that FDA note a few months ago but couldn't find one used and the one doc I asked thought I was crazy. I have FM and just flunked my second round of acupuncture, doing very badly pain wise. I figure the Gammacore wouldn't kill me either and I'm hitting the point where I'd almost take the risk. Please continue posting and if you find another one second hand PM me, if there's a way to do that here.

 

[Lorita]

Wow, Lorita, many thanks for your post and your guinea pigness LOL! I had exactly the same thought when I saw that FDA note a few months ago but couldn't find one used and the one doc I asked thought I was crazy. I have FM and just flunked my second round of acupuncture, doing very badly pain wise. I figure the Gammacore wouldn't kill me either and I'm hitting the point where I'd almost take the risk. Please continue posting and if you find another one second hand PM me, if there's a way to do that here.

Hi Steve, I haven't found another Gammacore machine, and mine runs out in a few months. But after 3 months use it is still helping a lot. I've gone up to another level of wellness, and stayed there. The manufacturere, Electrocre, have many other trials ongoing for the device for epilepsy, PTSD etc. I suggest people email the company asking for a clinical trial for ME/CFS. http://www.electrocore.com/contact-us

I've ordered a Salustim for when my Gammacore runs out - a different style device which needs no prescription, so Steve, maybe it's worth you trying that? http://www.tinnitustreatmentcentre.com/salustim_tinnitus_treatment_tvns_buy_salustim.html

 

[Lorita]

There are two issues I've noticed if people are trying to hack this effect or perhaps trying devices that haven't been clinically trialled. So if you've tried this and it's not working, it may be that it isn't the route for you, but it may be that the vagus nerve is not being properly stimulated.

1. One is that the Gammacore works via the neck and they had to make the frequency pulse so that it could penetrate the skin deep enough to hit the nerve in the right way. So some machines that claim to stimulate the vagus may not be actually doing so. See here: https://spectrum.ieee.org/biomedical/devices/the-vagus-nerve-a-back-door-for-brain-hacking :

"to reach the nerve, the stimulator has to transmit its signal through several centimeters of flesh without causing excessive muscle contractions. The signal must also pass through a layer of skin that’s both electrically resistive and chock-full of pain receptors."

2. Secondly for those who've tried the TENS approach via the ear, there is a clinical trial showing that the most effective vagus nerve stimulation via the ear is actually in the cymba conchae part of the ear (not the inner tragus). I believe the TENS instructions on this site, and indeed the Salustim and other VNS products, tell you to use the inner tragus.

I can't link to the image of where the cymba conchae is in the ear but if you click on the research below and scroll down there is a diagram (the right place on the ear is marked C).

CONCLUSIONS
The present results suggest that the cymba conchae may be a more appropriate location for tVNS therapy in the auricle than the ear canal and inner tragus, because stimulation of this location resulted in the strongest activation of vagal afferent pathway in the brainstem. Although further studies on the long-term effects of
tVNS are necessary, the present findings represent an initial step toward the design of an optimal methodology for tVNS treatment that can be a noninvasive alternative to direct VNS

Optimization of Transcutaneous Vagus Nerve Stimulation Using Functional MRI: TRANSCUTANEOUS VNS OPTIMIZATION USING fMRI (PDF Download Available). Available from: https://www.researchgate.net/public...RI_TRANSCUTANEOUS_VNS_OPTIMIZATION_USING_fMRI

 

[Steve]

Hi Lorita,
Thanks again for your posts,;I was wondering how the Gammacore was working. I have been unable to get a scrip for one or find one on EBay. The Salustim is over $700., not rentable outside wherever it's made, ? Norway. I'd consider buying if there was a really good chance it would work for me. You think it could be as effective for you as the Gammacore? While I'm pretty desperate, I don't like the idea of trying to jury-rig a hack to zap my vagus, which, as you know, has a lot of ramifications. That's why using a medical device seems better. I'm supposed to be in an FM clinical trial using a modified TB vaccine sometime in 2018. It's a long shot but I will wait for after that to decide whether I'm comfortable using more extreme measures. Let us know if you get the Salustim. I'm going to see if the device Cort mentioned early in this thread is more easily available.

 

[Lorita]

Hi Lorita,
Thanks again for your posts,;I was wondering how the Gammacore was working. I have been unable to get a scrip for one or find one on EBay. The Salustim is over $700., not rentable outside wherever it's made, ? Norway. I'd consider buying if there was a really good chance it would work for me. You think it could be as effective for you as the Gammacore? While I'm pretty desperate, I don't like the idea of trying to jury-rig a hack to zap my vagus, which, as you know, has a lot of ramifications. That's why using a medical device seems better. I'm supposed to be in an FM clinical trial using a modified TB vaccine sometime in 2018. It's a long shot but I will wait for after that to decide whether I'm comfortable using more extreme measures. Let us know if you get the Salustim. I'm going to see if the device Cort mentioned early in this thread is more easily available.

Hi Steve,
My update is similar to Cort's with the Cerbomed, ie I had a big improvement straight away, for me around 20-30% but after a few months it's tapered off to 10-20% improvement over prolonged use. But apart from when I'm down with the cold or flu virus my general well being and energy is still notably better and very glad I trialled the tVNS device.

Sorry to hear you couldn't find one. Did you have any luck with CerboMed? I'm now struggling to replace my Gammacore, which runs out imminently (I'm in the EU). I see they now offer an online prescription service via video for US citizens, but this may only be for a one month treatment and is expensive, so you'd have to make a judgment call. It might be worth it simply to try and see if it helps, then you'd know whether to pursue or not?

I also bought the Salustim and it runs off two AA batteries, a much weaker current than the Gammacore. I haven't found much reaction to it, it was very expensive and seems very flimsy and badly built. Not impressed at all. I really think you'd be better off with a hacked TENS machine than that!

Here's the info so you can see difference in strength of current:
GAMMACORE:
Targest vagus nerve in neck - using pulses at five 5,000Hz pulses, repeating at a rate of 25hz frequency to penetrate skin.

Max 30V, 60mA (variable).
Battery cannot be replaced .
Without a proprietary charger there is no possibility of recharging.



SALUSTIM:
2 AA batteries - 3 volts (more or less).
Batteries can be replaced.

NB a TENS unit is about 9 volts.

-----------------------------------------
and here's the draft of my notes for all the devices I've researched so far :

Vagus nerve stimulation - DRAFT


Type

Electrical current

Medical info

Type of stimulation

Cost

Report, Pros / Cons
Gammacore

Max 30V, 60mA (variable).
Without a proprietary charger there is no possibility of recharging.
Load impedence: 450-550ohms
Electrical signal consists of five 5,000Hz pulses, repeating at a rate of 25hz. Sine waveform.
Battery cannot be replaced (recharge MAY be possible).

Clinical trialled & FDA and EU approved for migranes. Prescription only.
Electrocore website has possibility of online prescription for US patients.

https://electrocore.com/

Vagus nerve in neck - using pulses at five 5,000Hz pulses, repeating at a rate of 25hz frequency to penetrate skin.
Uses electrical conductive solution on skin.
I vary between sides of the neck -- as left side can possibly affect heart (as far as I understand).

$600 for 300 uses of device.

20-30% improvement straight away, tapering off to 10-20% improvement over prolonged use.
- Note that inbuilt obsolescence means it gives 300 treatments then stops working, may be able to get recharger but not clear how.












Nervana

9 volt battery
(similar to a TENS unit).
Batteries can be replaced.
Not clear how much voltage actually available for VNS stimulation.

Crowdfunded, no clinical trials.
Claims to reduce stress.

Headphone into left ear canal only, synchronised electrical pulse with music option.
Not best location for VNS.* (see below)
Uses saline solution.

$300

Not tested. See healthrising.org forums for other peoples' testimony. (see below for link)











Salustim

2 AA batteries - 3 volts (more or less).
Batteries can be replaced.

No prescription necessary.
Claims to aid tinnitus. (any clinical trials?)

Clip in to inner tragus part of ear. (Not best location.* See below.)
Music optional.

£499

- weak current
- seems to help somewhat, but weakly. May just be placebo. (Much less good than gammacore)
- not super impressive machine for what you pay












Hacked TENS unit

9 volts?

No prescription necessary.
No trials of effectiveness.

Can buy specialist node to fit in correct part of ear.* (see below)

Cheap, less than $30?

Not tried myself. See how to set up machine here - but note ear clip location is incorrect in these instructions (see below*): https://www.healthrising.org/forums...o-use-in-vagus-nerve-stimulation-of-ear.2653/












Cerbomed

Don't know yet.

EU.
Prescription only (designed I think for epilepsy?).
Not cleared or approved for use in US.

Best location of electrode for VNS ear stimulation.* (see below)

Around $3000!

Not tried. Someone at healthrising.org did try it, similar results to me in that helped at first, then tapered off somewhat but still helpful.


Notes:

*CORRECT PLACEMENT OF OPTIMAL VNS STIMULATION - There is a clinical trial showing that the most effective vagus nerve stimulation is via the ear and actually in the cymba conchae part of the ear marked C on diagram attached, and linked to here (not the inner tragus). I believe the TENS instructions on the healthrising.org site, and indeed the Salustim and other VNS products, incorrectly tell you to use the inner tragus.

​

Clinical research links
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5024045/
compares invasive and non-invasive VNS including gammacore and nemos
(nemos had 5/10 epilepsy patients respond w less severe seizures but none reached 50% reduction)
(gammacare had 18 of 21 migraine patients respond positively to treatment)

https://www.researchgate.net/profil...ve-Stimulation-in-Chronic-Pain-Management.pdf

 

[Janet Deane]

I bought the Nervana, didn't find any improvement. Will sell for 150 euro including delivery, if someone wants to try it.

 

[sarah coleman]

Update - the VNS is not producing as tremendous results as it did at first. I expected that as that is how it usually goes with me.

It is still producing significant results though. I got lost in the desert and stumbled around for three hours in the dark. Ordinarily that would have utterly wiped me out but because I did the VNS that day it didn't that day or the next. That's the only explanation I can come up with.

Some other things - better tolerance for alcohol, better tolerance of foods, deeper breathing, calmer, remembering my dreams again for the first time in decades.


Doing it a couple of times a week for 30 minutes a shot.

I'm sure I'm in the wrongplace...I read Tens unit can help CFS and fibromyalgia but cannot find any search where placement of pads go...help!!

 

[SuzyDee]

Seeing mention of Gammacore here, it's also been suggested this can help with gastroparesis and has had some clinical trials done into this condition. I know 3 people with gastroparesis who were involved with this but none had any improvement in GI symptoms.

Regarding auricular vagus nerve stimulation for chronic pain, there's another player entering into the field with their technology dubbed as "Respiratory-gated auricular vagal afferent nerve stimulation (RAVAN)" which combines paced breathing with very short bursts of VNS -inhalation for 2 1/2 seconds and exhalation for 2 1/2 seconds and the stimulation only applied during the exhalation phase for 0.5 sec.

Not sure if their particular programmed stimulation device has reached commercial production yet or if it's going to be available for self use by consumers or through a licensed operator.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376238/​

 

[Steve]

That study is six years old, took them a long time to develop a device!
An interesting new book I'm reading is Accessing the Healing Power of the Vagus Nerve by Stanley Rosenberg . Haven't tried the exercises yet, lot of cranial nerve biology...

 

[SuzyDee]

That study is six years old, took them a long time to develop a device!

They (Massachusetts General Hospita) actually lodged a patent for this as far back as 2010.

I think they're still working on a "one size fits all" device as they are suggesting it to be able to treat hypertension and migraines too.
https://www.ncbi.nlm.nih.gov/pubmed/29060561
https://www.ncbi.nlm.nih.gov/pubmed/28541256

 

[JamesHx]

Hi,
Just wondering if to go down the route of trying t-VNS with a tens unit.
Is anyone still using and getting results ?
I'd be using this mainly for quelling inflammation (HRV Heart rate variability is VERY low) which is a probable sign of sympathetic overload
It seems like the waveform and location are the imprtant factors

 

[Baggins]

Update - the VNS is not producing as tremendous results as it did at first. I expected that as that is how it usually goes with me.

It is still producing significant results though. I got lost in the desert and stumbled around for three hours in the dark. Ordinarily that would have utterly wiped me out but because I did the VNS that day it didn't that day or the next. That's the only explanation I can come up with.

Some other things - better tolerance for alcohol, better tolerance of foods, deeper breathing, calmer, remembering my dreams again for the first time in decades.


Doing it a couple of times a week for 30 minutes a shot.

@Cort, I have one question: does NEMOS produce stronger effect than diaphragmatic breathing?