Menieres or MAV?

I found this list via researching Ménière’s disease. I had not heard of vestibular migraine until yesterday. I don’t know which I have. I always assumed Ménière’s. I began the John of Ohio protocol yesterday. Then I found this. I am hoping the first thing helps unless I need both. The symptoms seem the same. (?)
My main symptoms are clogged feeling in ears, tinnitus, brain fog, dizziness, pulling to the side and bumping into things when walking (Like the walls of my house etc) constant feeling of movement when still, spinning at times, spacey, feeling like nothing is real sometimes. Sometimes driving feels like a video game and not real. Hard to concentrate which is frustrating because there is so much i want to accomplish etc
The clogged feeling in my ears began in the 70s and the dizziness began in 1982 and it’s gone on from there. My symptoms have always been 24 seven every day since 1982

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Low frequency hearing loss is a feature which more strongly indicates Menieres. If you don’t have that it could well be MAV. You need to be diagnosed by a qualified professional however.

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I went to an ENT 10 years ago who did an mri and all the tests. He did not name what I had but he said it was incurable and would lead to hearing loss. And he sent me to physical therapy and suggested tai chi. Maybe this means Meniere’s? Thanks for the input. When I get insurance again, maybe I will think about going again but I think I am going to try the John of Ohio regimen first to rule that out (hopefully NOT rule it out) :slight_smile:

Do you have migraines or headaches as well?
I have Clogged ears, high-frequency hearing loss, tinnitus, neck pain, and dizziness. Initially, ENT suspected Ménière due to hearing loss but later confirmed VM due to associated headaches as well as patterns during the dizziness ( e.g, visual disturbance etc.)

I have been on Migraine prevention meds for 6+ months (Trokendi + Aimovig ( for the last 2 months)) and I am responding well to these drugs. I still have bad days but not as bad as I used to have when I first got this in January.

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FYI Menieres patients can have migraines as can PLF and secondary Hydrops sufferers so this is not a great symptom of distinction.

Menieres is definitely an order of magnitude rarer though so less likely.

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Hi, and welcome. You really do seem to have had to wait for a diagnosis. I thought my 12 years was a record but you certainly beat that. Good luck with your new regime. If it doesn’t help hope you soon you get your insurance and chase up something like a more definite diagnosis. It certainly helps. Only a MAV sufferer me, not a medic but I always understood Menieres to be quite easily diagnosed. Of course it’s possible for a person to have both Menieres and MAV so guess that can queer the pitch rather and they can overlap. Helen

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5019886/

Hello again
I rarely get headaches. I used to have neck pain and stiffness regularly but not so much anymore.
I rarely ever had health insurance and at the times I had it and saw doctors in the past they said my ears were fine and were not helpful at all - maybe they didn’t know as much at the time.
When I was 18 when my mom brought me to the doc, it was suggested I needed counseling due to my dizziness. Granted there were a lot of crazy things going on in my life at the time but the doc seemed to think that dizziness was the determining factor. Later another doc diagnosed ,me with hypoglycemia. So it never came together for me until about 10 years ago when I was able to go to an actual ENT who actually knew what he was doing in comparison to the others. When I got to the physical therapist, the questionnaire almost made me cry tears of joy because it was the first time anyone could relate and take seriously the dizziness I experienced on a regular basis from 1982 onward…
Going to continue with the JOH regemin for now. Thanks for all the well wishes

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