Living with Hemifacial Spasm

I was diagnosed with hemifacial spasm in 2006 and botox was suggested but my insurance rejected this treatment. (I do have different insurance now but based on my research I don’t know that I would want to take the botox route) I am sure like many of you I had to go through many doctors describing the same symptoms over and over before ever getting this diagnosis.

Like many of you described mine started as a spasm around my left eye and then over the years went down into my face about 10 years ago. The spasms seem to be better in the morning and then by mid to late afternoon the spasm really start to progress. “Stroke victim” has been used by friends and family to describe my face but that doesn’t bother me nearly as much as the discomfort in the muscles. I use trigger point therapy which I do myself. With the muscles being in constant spasms I am sure there is a lot of lactic acid buildup.

At the time I was diagnosed I was also dealing with another health issue involving chronic migraines which was eventually tied to damaged disc in my neck. Not having a whole lot of understanding about hemifacial spasms I had hoped cervical fusion of C4 and C6 surgery in August 2006 would alleviate the spasms. The cervical fusion was a great success rarely having migraines now but the spasm remain.

I have not pursued treatment for the last couple of years since I was pregnant and have since been breastfeeding. I don’t really know where to start at this point. I have little faith in the medical community at this point because I went through such a battle with doctors to even get the neck problem resolved and that is a much more common problem than HS. All the doctors I went to just wanted to put me on this or that prescription that only seemed to mask the symptoms and then not do much else for me even though I was communicating the undesirable side effects and the relief was very temporary. I wonder if I haven’t done a good job of communicating clearly about the spasms. I have already had the battery of tests to exclude other conditions. The doctor that did finally diagnose me back in 2006 didn’t seem very informed about the condition. Any thoughts?