I’ve done a lot of reading and been in touch with a neurologist who researches the problems the varicella zoster virus (chickenpox) and herpes simplex 1 (oral herpes) virus can cause when they reactivate in the cranial/trigeminal nerves. They could be the cause of a lot of illnesses that are poorly explained, in my view including MAV, Ménière’s disease, and even cases of stroke and encephalitis/me meningitis. Younger people can get ramsay hunt syndrone without the rash (this is hard to document however and get the correct diagnosis without the visible trademark rash). I find it very interesting that many MAV ppl respond well to drugs also used for post herpetic nueralgia (ie nerve pain after shingles). I found this article about a year ago that very closely resembled how my illness started, does anyone else think this could be the explanation for MAV? Maybe menieres is caused by oral herpes attacking the inner ear repeatedly, whereas MAV is actually chronic nerve dysfunction caused by a one time reactivation of the vzv (chickenpox/shingles) virus in the trigeminal nerves (including many cranial nerves- ocular, vestibular, cochlear, and facial). Have you noticed any lower eyelid drooping or one sided facial weakness and/or facial tingling and numbness after MAV hit the first time, aside from the other symptoms of light and sound sensitivity, ear crackling and a sense of disequilibrium after the initial vertigo? Here is the article: Neurological Disease Produced by Varicella Zoster Virus Reactivation Without Rash - PMC
One thing I have learned during this MAV thing is that there are many paths to illness and there are many paths to recovery.
In my case, there is no viral involvement. My MAV was very gradual, with many many precipitating health factors, both physical and stress related.
But I am sure for some people, it is a viral assault - as it may be with yours.
What’s interesting, on a side note, that I was speaking with an MD friend recently, and with all humility she told me that they have the traditional ayurvedic drs in India that accurately will diagnose your health condition by your pulse alone. Then they’ll cure you with their traditional methods, too. I know this is not related to your post, but it gives me a kind of solace to think that I don’t have to find the one and only way out of MAV (thinking that way was making me despair). The cure can come from a traditional route, massage route, meditation route, medication route, a combination of any of those, etc… We have to keep trying AND trust our instincts for our own unique condition.
Anyway, so, no, not in my case with the viral issue, but I have read others’ posts on this forum that said it started with viral involvement… Chickenpox or not…
Thanks so much for your response, Asli! I am a researcher by trade, so that is why I get so interested in these scientific articles. I do think what happened to me was virally caused and that’s why I am responding to gabapentin so well (a post-herpetic neuralgia medication).
But I agree with you 100% that decreasing stress and upping health in general (immunity etc) is vital for recovering and that’s the most important thing. Massage, meditation, in combination with traditional routes and medication are all helpful I think.
My neuro also mentioned this machine and I don’t know if it’s useful for MAV but it could be worth a try (it energizes the trigeminal nerve to try to calm it down), but seems only available in Canada at the moment (and you need a prescription for it): http://www.cefaly.ca/site/buynow
Have a good Sunday,
Liv
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Me too. Nort is more effective for stopping migraines, gabapentin for regaining stillness… I may have to go back on nort and hope that my heart beat is fine… Seemed ok the last time I experimented with it for a few days. Very best wishes to you, Liv xx
hmmm…interesting hypothesis …and I did get shingles last year but about a year after I noticed my first MAV/cervical vertigo symptoms. Could well be a link there…
Yup, I think so. But not many doctors have done research on this. The good news is that many of the drugs that help post heretic neuralgia help MAV-ers. (Nortriptyline, Gabapentin, etc.) Zoloft is very helpful for some; I have found great success with magnesium (nerve calming), St Johns Wort, and CoQ10 (200-400mg per day seems safe). I take 200 on most days of that. I am so grateful that I was able to find this combo - mostly thanks to Dr Weil’s site on migraines. We have inflamed nerves from whatever hit us initially and they overreact to stimuli so we have to calm them and sooth them! I think that nutrition is important to getting recover as well- get enough B12, Vitamin D, and C. I eat meat again whereas before i got this MAV i was a vegan. I eat much better than I did before and exercise too- got to keep the immune system up. Which is good for everything. xx
PS There is a hypothesis that people are getting more shingles (and maybe even mav- a form of it perhaps without the rash , that reactivates in the cranial nerves) because of the chickenpox vaccine. Fewer people are exposed to children with chickenpox, which leads to a lack of rebooted immunity against the virus to keep it suppressed in the nerve cells as inactive. Once you get chicken pox as a kid, you are always hosting the virus inside your nerve cells> They can reactivate at a time of extreme stress, illness so suppressed immune system, or due to vitamin deficiencies, I believe, that make you more prone to reactivation. There is hope for people who get it though and even though it’s very hard esp. int he beginning before you have a solution that works for you, it sometimes is a gift in the only sense that it gives you a unique perspective on the value of health and enjoyment of life (instead of stressing out all the time).
