The Vestibular Migraine & Secondary Hydrops Community
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It is persistent isn't?


So, a couple of years ago, I was lucky enough to get the correct diagnosis from a nurse practitioner. I was prescribed Topomax, because in an EEG it was discovered i had seizures. I did not know i had them. The Topomax was excellent, but it affected my kidneys. I was put on Depokote, but it affected my liver. So they tried a medicine, i could not afford (the name escapes me) and now I am on Gabapentin. The Gabapentin knocked me out, made me dizzy and confused. I told another nurse practitioner (the original one has gone into research) that this clearly is not the medicine for me. She said let’s lower the dose from 300mg to 100mg. I said “i will be one third as knocked out, dizzy, and confused.” But I agreed to try it. Well, guess what? I am one-third as knocked out dizzy and confused. Just as i thought. We shall see. The VM will not let up, somehow i have to outlast it and defeat it with the right meds. I am grateful for the time i did feel good.

Like many of you i continue the battle in looking for a solution. Thanks for taking this journey with me.


It certainly is … and I suspect for many it’s their first issue that doesn’t simply fade like a bruise does, so it’s something completely new and frustrating.


Mine has an interesting history. It started in 1999 with dizziness and some vertigo that lasted six months and went away on its own. In 2006 it returned with major frequent vertigo and it lasted 6 months and went away on its own. I was diagnosed with Meniere’s. In 2014 it returned and had frequent vertigo and the they thought it was Meniere’s. Then it morphed to head and neck aches and vertigo and i got my MV diagnosis. As i said, i was on meds that worked, but affected my body. The journey continues. I continue the battle.


Yeah, it’s tough to find the right compromise with medication, but for some the medication simply helps them live a better life.

At one point I was a vegetable without meds 3 days out of 5.


I think MAV does keep changing. My history is very similar to yours. Started with brief vertigo attacks diagnosed as BPPV which at that time they were much like. Then much longer attacks, up to 72 hours with some migraine-type symptoms, then more severe attacks which gradually came to include sound, light sensitivity, head pressure erc, etc. Inbetween long periods of perfect ‘normalness’ without ever any breakthrough symptoms. Sometimes I’d go over 12 months between. Then 8 day long attacks and eventually 24/7 symptoms. Then I went looking for answers and got MAV diagnosis. Mine sort of ‘evolved’ over a long time, 15 yrs in fact.


Wow 72 hours of vertigo. I have had for 24 and i was scared to death. Like James has said you got to be tough to take this disease on. Yet I know people have it worse than me.