I’ll never forget awakening with EM last April. The symptoms have not ceased for a second. My hands and feet feel as though I am being stung by a hellacious jellyfish while simultaneously being placed in an open flame. I’m sure this is common. I tried months of Lyrica, Neurontin, and Chinese herbal capsules, none of which helped at all, as well as topical remedies—some prescribed and some of my own concoctions. I don’t know how I ever found time to work. It seems that being disabled is at least a 60 hour per week job.
I use Lidoderm (five percent lidocaine) patches on other areas, and one day I slapped those on my feet just for the heck of it. They helped some. When I told my “brilliant” neurologist this, a light bulb went on. Oral lidocaine (Mexitil) had been relatively recently developed for heart patients. He put me on 150 mg twice daily. I felt some relief within 48 hours. After a week, I would say the burning was relieved by 40 percent. At least I was no longer suicidal nor was I desperate to amputate my limbs.
After 30 days of Mexitil at this dosage, he increased it to three times a day. However, I have not noticed any further relief.
Mexitil does have side effects. The primary one is nausea, which has not affected me one iota. What has affected me is extreme exhaustion as well as a bit of dizziness, but it’s definitely a good trade-off.
I am a widow with no children. However, I “claim” hundreds of children—my piano students. I have a Master of Music and served as a college piano faculty member, as well as operating a private piano studio, “Starnote Music.” My most recent position was with the Houston, TX, Grand Opera. I’m now retired, due to my multiple neuro-progressive disorders. I am an avid baseball fan and peace activist. I’m also a volunteer pianist—even with slightly burning hands.
(Starla would like to correspond with other members. See Member Directory for her email address or phone number.)