Not being facetious at all, but what was a huge help to me, mentally, was realizing that I’m not dying from it and it isn’t taking my mobility degeneratively. Is it highly disturbing and disruptive and trying on the patience? Absolutely, but, at the end of the day it’s nothing that is genuinely nasty in most cases. Also there is hope that it will subside, lessen, or at least wax and wane (like in my case).

The insomnia is tough because you know it’s going to get worse when you lay down and your brain slows, so you don’t want to do it... that’s when it rears up, just as you enter sleep. Still, even though I am where I am mentally now, I don’t sleep until I’m basically going to keel over. Combination of my gabapentin and knowing that, at rest the vibrations amplify. It’s also counter productive since there is a solid informal link between adequate rest and lessening vibrations and fasciculations.

Just as a quick recap for those who don’t know or remember my prior posts, I’ve just passed the 1 year mark of a monthlong mystery illness that walloped me, followed by severe internal vibrations including vocal cords, neck, throat, head and chest in addition to the more common leg and arm areas. Had every test under the sun and all were fine, which led to two independent neuro provided BFS / CBFS diagnoses.

One year ago I was bed ridden, crying non stop, scared out of my mind, 2-3 doctors per week, and felt like I was dying of something. Even when I tried to get around my legs would cramp and shake and give out. My nights were a hell of vibrating and waking up screaming with my voice fluttering from the vocal cords fasciculating. My thighs would wake up my wife from vibrating. I tried to walk outside and would collapse from the thigh and leg pain.

Now, my legs buzz often, most of the time one muscle somewhere is going nuts (my left foot arch is bumping and popping as I type this), but my mind and body have improved enough that I got to the point where I’d walk 7 miles golfing 2-3 times a week all fall, and now I’ve been skiing 3 times this winter.

Hang in there. Follow up with your medical team and get any testing they suggest, which will likely put your mind more at ease and/or help you if something simple can be done like a vitamin or hormonal correction.