I started writing this blog to document my life while I struggled with a so called "RARE" disorder. I have found out the symptoms are indeed rare, however the problem isn't! Migraines have taken over my life and I am on my way to defeat them!
Thursday, October 10, 2013
Verdict is in..... Nystagmus caused from a decompensation of my vestibular system
So, I have been looking around on the internet trying to find what i can mainly about my vision issues. (seeing cars kind of wiggle while in motion). I have heard this called frames before and have made the mistake of calling it that because that is not what it is. The cars literally wiggle back and fourth in a jerky kind of movement. It's like my brain is capturing the image but shaking it very slightly. If I watch a bunch of cars in a row moving, oh well, this is scary. Everything starts doing the same but it feels and looks like everything is going in fast motion.
Well my neuro-otologist said Optokinetic Nystagmus. My Neurologist/headache specialist said optokinetic nystagmus. And I said - I DON'T HAVE A NYSTAGMUS! I have recorded myself (stopped st s red light) watching these cars pass and see no jerking. I consulted a well known vestibular board who has a Dr. who usually comments on members' posts to lead them in the right direction. He told me he thought it sounded like nystagmus. (3 Dr's claiming nystagmus - Zero Bilateral Vestibulopathy patients telling me what this is.... maybe because it's rare and I haven't had any luck finding any).
So I went to my Neuro-otologist looking for some answers. He told me he has heard of it before and to stay off of the message boards. He said the worst people are on them (those suffering with their health conditions- but it makes sense, because they are looking for answers). He told me some nystagmus can not be seen with the eyes. They would have to use special goggles to pick this up. He didn't offer to do it, but reassured me it was normal and that I need to start doing my VRT again and also he agreed that some Vision therapy may be helpful as well. He said the brain just needs to re-compensate.
So I left with new-found hope!
Today was a little down as I started having negative thoughts about this getting worse or turning into something else, but then I remembered... I am going to get better, not worse. I am going to beat this!!!!
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