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Bilateral vestibular Hypofunction.... what next?

I got my official diagnosis report for the Dr. today. I had caloric testing done (peripheral Vestibular response) and it said Hypofunction on the left at 100% (not sure what that means) and 4.8% in right ear saying no function.

Then the ICE caloric response said Hypofunction in both ears with 49% function in right ear and 51% function in left ear. So it seems I have some function in my right ear per the caloric response, but the peripheral vestibular response says zero in my right ear.

I have looked online and everything says that bilateral hypofunction is very rare. Does anyone else have this? Knock on wood, I haven’t had any spinning vertigo in years… could this be because I have the damage in both ears? What treatment can be done? I also have basilar migraines and get off balance during migraine attacks, even without the pain… this is usually in super markets, which fluorescent lighting is a trigger.

I was diagnosed with bilateral vestibular hypofunction. It was useful to have objective findings because it helped with getting disability payments when I couldn’t work for most of a year. My theory is that my migraine was so bad that my vestibular system got damaged. I’m doing great on a multi-drug regimen, but I can tell I have the balance of an 80 year old person even when I don’t notice ANY migraine symptoms. I got some useful tips from a vestibular rehab physical therapist. Luckily I have a desk job, and I won’t buy a two story house. For me, the vestibular loss is easier to deal with than the migraine.

And again, I’m doing GREAT. I pretty much had no hope so I encourage everyone to keep fighting.

Hi, Dizzy!

Thank you for your reply and hope. So glad to hear you are doing great!!! I don’t have really any imbalance unless I have a migraine. I am sensitive to things like a video paning left to right… Anything that is spinning is what will set me ofd, but I recover quickly. My Dr. Said my vision system has taken over for my balance and so I get vision dizziness. Things like driving feel weird to me as my brain goes into overdrive. I feel like the trees are passing me and I am just sitting still not moving… Very strange.

Can you share the tips you were given from the VRT therapist. Also what type of exercises were ypu doing? Mine just has me doing the head shake exercises left to right up and down. Then closing my eyes and standing still. I wonder if I will ever be able to drive normally again. I can no longer go on lo.g trips… Those do make me dizzy for all the stimulation.

Thanks for replying!!

Candi