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It's almost undescribable, and no one can fully grasp what it is unless they have been affected by it. It isn't really dizziness, although I feel like I am way off-balance, and often veer to one side or another. Only one other people that I have known that had it (and actually got over it) were my cousin, who is quite a bit older than me, and my physical therapist who was treating me for BBPV (vertigo with the CaCO3 crustals that are out of place in your inner ear); she said hers was from an antibiotic she was on, and when her dr. gave her another antibiotic, it stopped.
I don't fit into any of the categories of people who get this rare condition... I never took medicines that may cause it, I don't have an auto-immune disease, a brain lesion, etc. and the neurology specialists I ahve seen can't figure it out either. MRI showed no problems, but ENG testing (calorics test,, where they blow warm and cold air into your ear and you are supposed to get dizz) I had at the ENT office showed I had a moderate deficit in both ears.
I've been doing vestibular rehab training (on my own) for over 7 months with no change. I've had this for just about a year now, and would appreciate any similar stories, what caused it, what did you do to get over it, etc.!
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