Weird Eye Symptoms

Hi, I'm new to this forum, but have been at this website for a couple of months. Most of my posts are in the "Dizziness" forum, but they are brain-related, so I thought I'd ask here...

I have been diagnosed with vestibular-ocular reflex dysfunction, which causes dizziness... not the room-spinning dizziness (although I did have that too (BPPV), for over a year before it finally went away). Since I know it's almost a guessing game with doctors and even specialists, and I'm getting no answers from them, I am reading a lot and trying to figure things out myself.

Does anyone else have these symptoms, and what IS it, and how do I get rid of them, or at least lessen them? I noticed something new tonight... Lights bounce up and down when I move my head. For example, I was pressing a button on my phone, deleting messages, and the red indicator light was jumping all over my field of vision as I was doing it! I also have trails of lights behind a light when I move my eyes across that light, such as looking near a street light at night (not even directly at it). This can make the headlights on cars a little distracting, so I don't drive at night much anymore.

I also have oscillopsia, which is where the horizon (and everything else), moves with my head movements like when I walk. It's lessened a tiny bit since I've been doing vestibular rehab therapy on my own, like moving head side-to-side and up-and-down, 50-100 movements, a couple of times a day. They say also just walking helps retrain your brain to keep things still.

People don't realize how bad this really is, and say "oh, I get dizzy every once in a while too" or "of course things move when I move my head" - they just don't get it! This is constant, and does not ever go away.

These things are annoying and cause me to have a feeling of off-balance whenever I move my head, even the slightest bit. I've had these symptoms for over a year now, and have seen an oto-neurologist, an ENT, and a "regular" neurologist, with no real diagnosis!

I also have a history of migraines, and had a small stroke 2 years ago. No real damage, just a small area of my peripheral vision, that seems to be resolving itself - they say the brain takes over for parts that have been damaged, and apparently it is, for that.

It was in my parietal lobe.

Can anyone else relate? Betahistine is not available here in the U.S. although I have heard it helps some who take it, with the balance problem. I can best describe it as having something heavy on top of my head, and walking as if I was on a trampoline! I just drift to the left, coudln't walk a straight line if I had to, have to hold onto walls and furniture when I walk inside, hold a cart while I shop, and use a cane if I walk outside for any distance. Otherwise, my upper back gets strained and I start having muscle spasms.

I would just like this to get better, as quickly as it started. Any suggestion on what it might be, and how it might be treated/helped?  THANKS! 

0 likes, 3 replies