Vagus Nerve Stimulation

Penelope McMillan said:
Yes, I get the same PEM as if I had struggled to do whatever I have done, in terms of when it hits, how severe the PEM is, and how long it takes to resolve. So yesterday I made the same mistake, too much standing around at an event instead of always sitting with my feet up (I carry a footstool for my feet). It's so much harder to be careful when I feel OK! Later last night I felt dreadful, today I am flat, and I fully expect tomorrow to be rough.

However, the PEM symptoms are not as strong. It's hard to explain, as I am still definitely in PEM. But for example, I am less likely to have that feeling of an icy burn on my skin, I have a much lower sense of being wired, the tinnitus won't be as extreme, etc. I still feel depleted and struggle to do anything. It is PEM. But it's a bit more comfortable than I would historically have expected.

I hope that makes sense?
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Dear Penelope, I have one question: does Parasym produce stronger effect than diaphragmatic breathing?
 
This VNS stimulator being discussed is clipped to the tragus, the bit of the ear that is pierced below.

tragus.jpg

While the tragus is a convenient place to clip something to, it's probably not a very good way to stimulate the vagal nerve.

The evidence for the utility of invasive Vagal Nerve Stimulation (iVNS) (that is when a stimulation device is implanted beside the vagus nerve in the neck) is quite weak. Studies tend to be either very small or unblinded or both. Improvements are usually relatively modest and could be a placebo response. iVNS is claimed to work in a wide range of conditions, most of which rely on patient reports to assess improvement such as depression and anxiety (i.e. subjective reports).

The evidence for transcutaneous VNS is weaker still, with the evidence for VNS achieved by a clip on the tragus as opposed to another part of the ear even weaker.

It is not at all certain if a clip on the tragus of the ear is able to stimulate the vagal nerve adequately. In fact, it isn’t even clear if the vagal nerve is stimulated at all. Knowledge of neuroauricular anatomy is described as 'sparse' in the paper linked above, and the tragus does not appear to be a particularly well enervated by the vagus nerve.
 
Merged thread
I can't see if there is a thread on individual experiences of the VNS. I am currently fluctuating from lower severe with occasional moderate. My VNS arrived today. I managed 1 minute on setting 1microamps (couldn't manage any higher) at 50 micro seconds, 15hz. Then there was pain, my ear flashed heat and the pain extended to the right back of my head so I stopped. I felt ill afterwards. A few hours later the exact same thing happened again. I will keep on trying daily. It def states to stop if start experiencing negative effects.

My husband with LC and is mild to lower end moderate had the setting on 8microamps (then had to turn down to 7), 50 micro seconds and 15Hz for 10 minutes. Second session he did 100 microseconds (200 w3as too much) at 30Hz went up gradually to 3 microamps. No reaction other than feeling like pins in his ear.
 
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Tara Green said:
I can't see if there is a thread on individual experiences of the VNS. I am currently fluctuating from lower severe with occasional moderate. My VNS arrived today. I managed 1 minute on setting 1microamps (couldn't manage any higher) at 50 micro seconds, 15hz. Then there was pain, my ear flashed heat and the pain extended to the right back of my head so I stopped. I felt ill afterwards. A few hours later the exact same thing happened again. I will keep on trying daily. It def states to stop if start experiencing negative effects.

My husband with LC and is mild to lower end moderate had the setting on 8microamps (then had to turn down to 7), 50 micro seconds and 15Hz for 10 minutes. Second session he did 100 microseconds (200 w3as too much) at 30Hz went up gradually to 3 microamps. No reaction other than feeling like pins in his ear.
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Have you seen that @PhysiosforME are currently collecting people’s experiences of this? See https://www.physiosforme.com/post/v...j_-poEw2XgOhAEDZ13wfowGKxadFECKYHGP6ReKvFOXlA

(Added - Also there are quite a few threads here addressing vagal nerve stimulation so it might be worth doing a search for this here. I did one just now but am not with it enough today to be able work out which were relevant.)
 
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Peter Trewhitt said:
Have you seen that @PhysiosforME are currently collecting people’s experiences of this? See https://www.physiosforme.com/post/v...j_-poEw2XgOhAEDZ13wfowGKxadFECKYHGP6ReKvFOXlA

(Added - Also there are quite a few threads here addressing vagal nerve stimulation so it might be worth doing a search for this here. I did one just now but am not with it enough today to be able work out which were relevant.)
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I have seen that, thanks Peter. I think the survey has to be filled soon and I really won't be able to make any kind of judgement on it by then.
 
I won't diary each day on this but I've managed two sessions of 5 minutes each without much ado. Hot flash ear appeared at end and to a lesser degree. I've had an unusual headache and sick feeling all day. The headache pain was exactly where it hurt when I switched it on last night - back right - lower.

I am keen to just switch it on full and get on with it but easing into it gently just in case there are unforseen negative effects. I usually lie on one of those yoga pillows with the plastic spikes because that area is so numb and raw (lower brain stem area) (not when sleeping). I will take it to 10 minute sessions and then see how far I can increase it. I would imagine I should have a yes or no within a month or two of using it. I also have tinnitus quite badly, OI and I've heard it's good for these too so maybe I'll get lucky somewhere. Unless something happens and I discontinue, I will pop back when I finish the trial.
 
Just to note, I think I might have a faulty machine. It went off last night and came back on really mild, husband said the same. I made sure it was fully charged and have used it today on recommended settings and got it to 4m/amps without feeling much at all. Massive headache and sick feeling it gave me is almost gone.
 
I had a parasym and was told to leave it on 200 and 20 and only adjust the intensity level and time as variables.
I got up to about an hour but found I often seemed to accidentally trigger the sympathetic system by having intensity even marginally too strong (a clear tingle). I seemed to have a spell where alot else went wrong bodily (a probable gallbladder attack) so I discontinued it on their advice I may have another go if I stabilise or improve.
I'm pretty disappointed as it was a big investment.
 
Suffolkres said:
Vagus Nerve Stimulation Wanders into Mainstream Rheumatology
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To continue the autonomic metaphor I wouldn't hold any breath. This idea has been going for nearly twenty years and the best they could do was:

“The first trial was designed to assess the safety of this new device, and we were fortunate to have seen some efficacy in this 14-patient trial of patients with refractory disease.”
 
Press release: electroCore, Inc. Announces Study of gammaCore Sapphire™ for the Treatment of Post-COVID Syndrome

ROCKAWAY, N.J., July 07, 2022 (GLOBE NEWSWIRE) -- electroCore, Inc. (Nasdaq: ECOR), a commercial-stage bioelectronic medicine company, today announced Mayo Clinic is initiating an investigator-initiated study to assess the efficacy of gammaCore Sapphire non-invasive vagus nerve stimulation (nVNS) in patients with post-COVID syndrome. Post-COVID syndrome, also known as Long COVID, is a collection of symptoms that persist greater than 28 days after the initial onset of symptoms of SARS-CoV-2 (COVID) infection1,2. These symptoms, such as headache, brain fog, fatigue and gastric distress can bear a striking resemblance to the “central sensitization syndromes,” a group that includes fibromyalgia, chronic fatigue syndrome, and postural orthostatic tachycardia syndrome (POTS). Post-COVID syndrome is likely to occur in upwards of 10% of the population who has been infected with COVID, likely affecting hundreds of millions across the world.

The study entitled “Outcomes of treatment with non-invasive vagal nerve stimulation (nVNS) in post-COVID syndrome: A Pilot Study,” is a randomized, single-center, controlled trial enrolling up to 20 subjects recruited from the Post-COVID Care Clinic at Mayo Clinic in Rochester, Minnesota. Endpoints of the study include a number of clinical questionnaires including the Post-COVID Functional Status Score, as well as an analysis of blood samples for certain chemokines, and positron emission tomography-computed tomography (PET-CT) of the brain to evaluate brain metabolism.

“Long-COVID represents a significant ongoing medical challenge that can extend long after the acute phase of COVID,” said Dr. Peter Staats, Chief Medical Officer at electroCore, Inc. “We believe the decision to use gammaCore Sapphire is consistent with its demonstrated mechanisms of action and its use in acute-COVID under an Emergency Use Authorization granted by the Food and Drug Administration.”​
 
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