evanboyer5
Member
Hi everyone, I’ve been reading the board for a while and want to thank you all, it has been very helpful! My symptoms started with a non-stop under eyelid twitch in Nov 2010. This went on for almost 3 weeks and nearly drove me crazy, between the feeling and wondering if people could see it. I’d been very stressed over the past two years, and it all kind of snowballed over the month prior. I believe the stress started the ball rolling. The twitch finally stopped, but I started getting strange ‘feelings’ around my eyes. I assume these are the sensory issues I’ve read about here but to me they were like a buzzing, slow twitch, flutter, hair on my skin, etc. That went on for a few weeks until sometime in Jan – BAM! Twitches everywhere! All the time. I had “the scare” but thankfully found a post that led me to this site. I diagnosed myself with BFS because I seem to have all the classic symptoms. I decided to go to my primary care Dr at the beginning of March because I have a lot of the eye/facial issues and they are really bothersome. For a while I think I was getting depressed because of them. The other twitches don’t bother me nearly as much anymore. I guess I am getting used to them. Primary Dr. said my reflexes were a little “fast” (I think – it was something not quite normal). He did a thyroid test and said if everything looked fine I should see a neurologist. As I suspected, things were fine, so I made the appointment and finally got in to the neuro yesterday. She did some strength tests, had me walk, etc, and said she is pretty sure I have BFS and not to worry. She ordered additional blood work (those I remember on the order were: CPK, ANA, B-12) and I am to come in next Friday for an EMG. She prescribed Neurontin – I’m to take it before I go to bed. Like many of the posters here, I feel the twitches a lot more when I’m still/laying down. I’m hoping it will calm some of the eye ‘stuff’ I’ve been having. I’ve read here it doesn’t help the twitches as much, but I’m coping with them much better than the eye/facial sensory issues. She also asked me to cut caffeine. I know some of you haven’t found any relief in doing that, but I am going to give it a try as I have quite a lot of caffeine in the mornings. With the EMG – do they need to test an area that is actively twitching? They said the test will take about an hour, and during an hour I’m sure I will twitch somewhere, but they are so random and variable I don’t know if I will be able to find a spot while the twitch is occurring. I’ve convinced myself I have BFS. I have a chronic autoimmune disease I’ve been living with for 16 years, so the ‘forever’ part has been a little easier for me to accept. I feel better after talking with the neuro and I’m sure I’ll feel even better after the EMG. Beyond that I am going to try to live as before (with less caffeine and hopefully less stress). Thanks for listening and thanks for your support! Sincerely, -Nancy
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My lower left eyelid is typically the one that goes on for weeks at a time; rarely has the right one done that. On the day of the injections, both were twitching and the right one had been going for about a week—although not as severe or bothersome as the left usually does. So, he injected 2 units under the left and 1 unit under the right. It was completely painless, I barely felt a thing.The next morning, my left eyelid twitch was gone. The previous night it would twitch if I smiled, sneezed, or even looked a certain way. As for the right eyelid, he told me it could take up to two weeks for it to cease and if it didn't, the next time we would do 2 units. As of today—10 days after the procedure—the right one continues to twitch, although it's just a slight back and forth spasm when I blink hard enough. The effects are supposed to last up to 4-months.So far I am pleased with the result. Next time I will most likely do two units under each eyelid and I think that will do the trick quicker. I would not hesitate to look into it if the eyelid twitches bother you, especially if they go on for a long time. I am thankful I know someone who could perform the injections. Before the procedure at his office I called a local dermatologist office that offered Botox to get an idea of how much it might cost. They acted like I was certifiably nuts for asking and told me they had never done it for that before. I had to offer her a quick briefing on its non-cosmetic uses.If you have any other questions, PM me anytime!