Conflicting Diagnosis/Possible Multiple

Hello, new here and looking for advice/support. Sorry for the length.

I have a history of migraines that started in high school, but were only recognized during an ER visit with some vertigo, inability to talk, and worse pain that I’ve ever experienced a year and a half ago. Topamax decreased the frequency of the migraines and I only had those rare bad migraines occasion, but with significant side effects. (Depakote and antidepressants are not an option because it conflicts with another med, and emergency meds were not offered nor did I pursue due to the fact I’ve heard they can cause major drowsiness.) After a year, I gave up on the Topamax and decided that I’d just live with the migraines for a while and then reassess. I was on the very of returning to my neurologist when the following happened:

7-8 weeks ago I had a sudden onset of vertigo starting with a sudden bad headache on exertion and then nausea and some dizziness that initially calmed as I sat quietly until I started driving to work. Over the course of the hour drive I felt worse and worse (I never would have attempted it if I’d felt badly before I left). The nausea worsened and was really dizzy and weak feeling as I got close to work. I was really shakey as I walked in and they had me sit and then lay down as I about collapsed by the time I got inside. The decision was made shortly later to take me to the ER and by that point I was incapable of walking under my own power.

They admitted me overnight for an MRI and CT of neck/head and blood work and observation. All clear. I spent the next week walking with the aid of a walker. The day before I’d been fully functioning at work (I work as a veterinary assistant which involves constantly being on my feet, bending, lifting dogs of significant weight, etc.), walking my dog and running around with him in the backyard, and horseback riding (did not involve anything that would make me suspect neck injury).

I went through further testing and visits to the ENT for possible BPPV and the neurologist for possible vestibular migraines. The Dix-Hallpike did not eliciit nystagmus visually to the ENT, though I did have some worsening of the vertigo to the right side. The VEG came back suggesting I actually had BPPV to the left (though again no nystamus visible to the left and no worsening of dizziness to the left). The neurologist was comfortable diagnosing vestibular migraine and restarting Topamax (the once-a-day version this time) to at least treat the headaches if nothing else.

I have had some improvement in balance so long as I’m not carrying things. I can’t walk very far at all more than once or twice without needing a rest. Driving is out of the question. I’m back at work (get rides), but definitely limited as to what I can do. I’m in PT to try to work through the dizziness and improve my balance. No idea when I’ll be closer to normal, or at least able to drive short distances and do more things.

Has anyone had a disagreement with whether it’s BPPV/vestibular migraines/maybe both? And have extended periods of vertigo? For how long? How did you cope?

Welcome to the board and the community. Sorry you are dealing with this crp too.

The majority of the sufferers on here appear to get some level of positional vertigo if this poll is anything to go by:

https://www.mvertigo.org/t/poll-does-your-position-in-bed-seem-to-affect-your-level-of-comfort-and-symptoms/14450?u=turnitaround

Suffice to say, MAV sufferers often get positional vertigo.

That tells me MAV is not simply a migraine complaint and there is something else going on too, but apparently my views are controversial :slight_smile:

That said, the absolutely best thing for you to do is investigate the treatment options for ‘MAV’, starting with the diet and failing that the meds, but of course all this has to be discussed with and directed by your doctor. I started out trying to cope without meds but was hit with terrible migraines which forced my hand.

Sounds like the classic MAV symptoms and very much mirrors my own. I had terrible migraines (2-3 weekly) for about 18 months, at which point I had almost the exact same thing happen, hit with sudden vertigo, vomiting, inability to speak or stand up

That was 4 years ago now. I’m still suffering daily with dizziness and imbalance, but it’s much much better than it was previously. I’m down to about one migraine bi-weekly with Gabapentin. Have been considering starting Nortryptiline but haven’t pulled the trigger yet.

Yes, my story is long to describe here. Please see my photos vertigo album on my Facebook page "Gracy Kalath " . It is open to public now. It might help you to figure out what induces your symptoms. Good luck!