Personal HFS History - Lynda Bailey

First of all, let me introduce myself. I'm Lynda Bailey, I’m 70 years old and live near Rochester, NY (USA) and I’ve been retired for about 7 years.

I started noticing a slight flutter in my lower left eyelid in February 2005. I was working as a dispatcher at our local volunteer ambulance corps and also doing their bookkeeping. Since I usually noticed the spasms after a 4 hour shift, I initially chalked it up to eye strain. As I went through the rest of the winter and spring, the frequency of the flutters increased, particularly after working on the computer. I decided to take a leave of absence over the summer to see if things got better, but they didn’t.

During this period of time I saw my primary care doctor and my optometrist and was told to “get more rest and reduce my stress level.” One of the problems was that the tremor was deep and while I could feel them, they weren’t visible by others.

In the fall of 2005 I went to a neuro-ophthalmologist I had seen some 15 years before for a bout with optical neuritis in my right eye. The spasms were becoming more frequent and were spreading to the top lid but were still mostly invisible by others. He did order a MRI and reviewed it with me, pointing out several MS markers. After he commented on the 3rd or 4th marker I stopped him and asked if he was telling me I had MS. To this he responded, “Oh no. Lots of people have markers but never develop the other symptoms.” (I wish he had told me that before he started!) Anyway, he didn’t find anything else abnormal and ended the review with “OK. Everything looks fine. Is there anything else I can do for you?” Somewhat taken aback, I responded with, “The twitch?” His response was that there really wasn’t anything specific he could do for that but I might try Botox® injections (something my own primary physician had suggested 4 months before) or, if things got really bad, I could go to a hospital in Pittsburgh, PA (USA) and they could drill a hole in the back of my head and relieve some pressure, at which he said goodbye and walked out.

I next tried an ophthalmologist and, after a complete work up including a field of vision exam, was told that my eyes were relatively healthy for my age and they really didn’t do anything with twitches.

OK, no diagnosis but with 2 suggestions of Botox® injections I went back to my primary and got a referral to a plastic surgeon. The first injections occurred in March 2006. Since I have really strange and sometime bad reactions to medications, he only did the lower lid and with a small amount. It did seem to help and I went back the next week for a little more and some in the upper lid. It helped a bit but made my whole eye area feel really strange all the time, kind of like I had a little water in my eye. I had another set of injections in June, which didn’t help much at all and in September I went back for another set of shots. This time I had a bad reaction and, by the time I got home I felt like I had numerous bee stings all around my eye and had to use ice to relieve the discomfort. By then the spasms were occurring 40-50% of the day, but the Botox® was making me uncomfortable 100% of the day, so I quit.

Over the past few months, the spasms have increased. The lower lid is in continuous spasm probably 75-80% of the time and it is now visible, but still doesn’t look as bad on the outside as it feels on the inside. The upper lid is also involved, but not to as great an extent, and the nerve in my cheek is affected at times.

I found the HFSA site while searching the net trying to get some sort of information on what was happening to me. THANK YOU!!!! All those doctors and not one mentioned Hemifacial Spasm! I’ve been reading all the email and have learned so much in the past month. I’ve also gone to some of the medical sites and printed out information for myself and am making copies for my doctor!

I know there are medications I could try, but both my physician and I are hesitant to try them do to my reverse reaction to so many drugs. I’m actually beginning to try acupuncture which, while not helping the spasms as yet, does seem to be helping my arthritis and sleep patterns. As far as the surgery is concerned, I’ve had too many really bad “side-effects” from surgical/medical procedures to even be thinking about that route for now, but who knows what the future will bring.

One of my triggers is definitely working on the computer, but between my volunteer work and my personal work/enjoyment, which is mostly computer oriented, I’m probably not going to reduce this. Unfortunately, reading is also a problem, but books on tape are great! I can still sew and do other close work, but for short periods of time.

In the meantime, thank you for saving my sanity. It’s a relief to know I don’t need to “get more sleep and reduce my stress level”, as if I could! I’ll continue to read with interest the various emails and hope to get to know some of the HFSA members better as time progresses. If anyone has any suggestions, I would be delighted to hear from you.

I would also like to extend a special “thank you” to Jack for all the hours and effort he puts into helping all of us!

Permission granted the HFSA to post Personal HFS History on website.
Lynda Bailey, January 28, 2007

 

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