I often joke that someone is going to call the police after they see me stagger through a parking lot, get into a car and drive away. And, never in a million years could I pass those old field sobriety tests. But my balance does not affect my driving skills. Thank goodness. I deal with disequilibrium, which I used to call dizziness even though dizzy didn't quite explain how I felt. I have an outstanding General Practice doctor who stays on top of all the findings of the specialists I see. That has been invaluable. He was the one who called it disequilibrium as opposed to dizziness. I find having the proper terms alleviates some of my frustration. The disequilibrium does, on occasion, make me nauseous, but Dramamine helps with that. Sometimes I have the sensation of my brain sloshing around in my head. It actually feels like my brain is moving inside my head. It is annoying, but the thing that makes me the most crazy is the oscillopsia. That means that whenever I move, stationary objects appear to be moving. For example, if I am chewing and trying to read my computer screen, the words move on the screen. It isn't so bad that I can't do both at the same time though. It happens as I bump along in my car and if I move my head, etc. Fortunately, it isn't so bad that I can't drive safely. I prefer to stay off the interstate though. It is uncomfortable. It was my Vestibular Rehab therapist who gave me the word oscillopsia for what I was experiencing. Again, the proper term has relieved my frustration along with anxiety and the feeling of being crazy. I found this article to be helpful: https://vestibular.org/article/diagnosis-treatment/types-of-vestibular-disorders/bilateral-vestibular-hypofunction/ Early on, I found driving in the dark to be no fun. This is because, with a messed up vestibular system, I depend more on my eyes for balance and I am taking away some of that function in the dark. I prefer not to drive outside of town after dark. I didn't tell you that I have bilateral vestibular schwannomas also called acoustic neuromas. Essentially, that means I have benign tumors growing on the nerve that connects my ear to my brain on both sides of my head. I haven't had them removed, because of the high risk of total hearing loss in my case. I had Gamma Knife Radio Surgery, which is a kind of radiation. My tumors are still there, but they aren't growing at this time. I also have the diagnosis of Neurofibromatosis Type 2. I won't go into all of that. Anyway, the point of this post, is that just having terms for the symptoms I am experiencing has been helpful and empowering. I didn't get these words from my specialist doctors. But, my home doctor and my vestibular rehab therapist (who is in the physical therapy department of my home healthcare facility) were the ones who gave me terms. I guess if I had any advice it would be to keep talking about what you are experiencing, with whomever you are working with. You will learn different information from different sources. I also found Google to be helpful and, of course, this community here at Mayo Clinic. Best wishes to you all.

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