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August 17
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Answer Summary

Members explored vagus nerve stimulation as a possible add-on for managing myasthenia gravis flares, with experiences ranging from helpful to... Read more

Members explored vagus nerve stimulation as a possible add-on for managing myasthenia gravis flares, with experiences ranging from helpful to unhelpful depending on the condition being addressed. Several members shared natural, non-invasive vagal techniques like deep breathing, cold water exposure, humming, and exercise, while others found it less useful for MG specifically. A recurring theme was finding small, manageable supports during seasonal flares, including coffee or caffeine later in the morning and Pedialyte, with many members in a 'can't hurt, might help' mindset about exploring new options.

A MGteam Member

I do find a cup of Java helps if I wait until 10 or 11AM - my early mornings are dumpster fires that caffeine doesn’t help put out…Also Pedialyte, but also late morning for me…

August 18 (edited)
A MGteam Member

Vagus nerve stimulation is more helpful with anxiety and POTS. At least I have found it useless with my MS/gMG. Tapping specifically finally had some scientific testing behind it saying it's a placebo affect much like acupuncture actually now had too. Hearing it about acupuncture made me laugh because I never found any benefit with it either. I went to nearly 100 sessions with one of the most top rated acupuncture specialists. All I had to show from it was a massive bill and a pile of dried herbs and beans to detox me. I was actually seriously ill with gall stones and the undiagnosed autoimmune issues. All he cared about was glancing at my tongue (which showed dehydration and digestive issues/bad breath) and feeling my pulse (since he was nearly 75 and his fingers cold I doubt he could even feel enough of my pulse since he never pressed half as deep as most nurses. He certainly didn't catch to the gall bladder issues, strep throat, sinus infections, UTIs, bronchitis/pneumonia and colonic inertia/gastroparesis that were all present during the year and a half I went to him. Though I found Lo Han Kuo (pure monk fruit sugar cubes) helped my breathing with bronchitis thanks to his wife.

August 20
A MGteam Member

I have never tried vagal nerve stimulation but your question is interesting, Bob. I'm going to look into it. I have not had severe symptoms for some time but I do have some weakness and fatigue every day and I am very reactive to stress and weather. Mestinon is listed as a possible treatment in an earlier post and one thing I will say is that when my doctor referred me to Cleveland Clinic years in 2018, Dr. Levin said MuSK positive Myasthenia Gravis will not be helped by Mestinon (pyridostigmine). I had been on it for about 6 months at that time and was not helped. At that time he said the only "disease-modifying" treatment available was Rituxan and I am so glad it was successful for me. Now I think there a couple of other new treatments for generalized MG that include MuSK. I think that vagal nerve stimulation, which would be non-invasive and no added drugs, might fall into the "can't hurt, might help" category.

August 17
A MGteam Member

Hi Bob,
I have used this non invasive technique for quiet some time, and it really helps me.!
Natural and Non-Invasive MethodsDeep breathing: Long, slow exhales activate the parasympathetic nervous system and lower heart rate.Cold exposure: Splashing cold water on your face or taking short cool showers triggers a calming vagal response.Vocal sounds: Humming, singing, or gargling water stimulates the throat branches of the vagus nerve.Exercise: Regular physical activity helps tone and strengthen overall nervous system balance.
Cheers Chris

August 17
A MGteam Member

Good question Bob - never heard of it

August 17

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