So, in the fall of 2015, I began to get this weird dropping eye twitch thing. It seems to occur with fatigue, too much reading (and I was in grad school, taking a full course load, on top of teaching all day), and bright lights. Once again, it was back to the neurologist. This time I went every 3 weeks for awhile, took lots of photographs and videos for the doctor to view. Wildly, once it "shuts" for all functional purposes, I can put an ice cube on it and it pops back open almost instantly! After many visits and updated scans and tests, the neuro felt like I had developed a second focal dystonia like the cervical dystonia in my neck, this one was in my left eye. It is called blepharospasm. Oh joy. Yeah me, I am that lucky! Now, I'm not totally convinced this is the right diagnosis, but until I get into see a movement disorder neurologist, this is the diagnosis I have for now. It is always hard when you do not fit the "mold" for typical symptoms in the neurology arena. (That specialized neuro takes from 6-8 months to get into in my area!) I found that I had to do my graduate school reading when I was fresh in the morning and to be mindful of how much sleep I got each night. This meant my weekends now consisted of reading first thing on Saturday until I had double vision and continuing on Sunday morning until I was finished. If I am out late the night before for such things as parent conferences, concerts, etc., I tend to have more issues the next day. So, I am even more mindful of my evening events during the school year. Now, for me, at this point, the eye thing is not painful at all. It is more annoying than the neck tremor as it causes me to have double vision, but it is not a spasm like the neck. Again, I take the same meds for the eye as I do the neck. Eventually, I will do Botox injections for both as that is the gold standard of treatment for dystonia. However, I've heard the injections are painful and costly and require they be repeated every 3 months. Plus, they usually "overfill" the injection at first which can lead to some other side effects such as inability to hold my head up, slurring my speech, and swallowing issues until enough wears off to give the perfect relief. But again, it is constantly wearing off so the "perfect" few days won't last long. For now, I'm able to handle it as is and pretend I have an alter ego that is a pirate! Hey matey! Aye!
Here's is the official definition of blepharospasm from www.blepharospasm.org:
Blepharospasm is a neurological condition characterized by forcible closure of the eyelids. Blepharospasm usually begins gradually with excessive blinking and/or eye irritation. In the early stages it may only occur with specific precipitating stressors, such as bright lights, fatigue, and emotional tension. As the condition progresses, the spasms may intensify so that when they occur, the patient is functionally blind; and the eyelids may remain forcefully closed for several hours at a time.
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