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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 2 days ago | Replies (415)Comment receiving replies
It is a response to a viral infection, although little has been written about a viral cause of BFS. Many people have herpes virus and may not even know it; however, the virus can access your nervous system through the olfactory nerve or trigeminal nerve. This happened to me in September 2019, and I am still trying to get appropriate treatment (intravenous acyclovir). Oral acyclovir has very limited efficacy for treating herpes virus in the CNS, but I have yet to find any case study of it being used to treat virally induced BFS. Intravenous acyclovir is used to treat herpes encephalitis, but I believe it should be tried for treating BFS, if a viral cause is suspected. It would be an excellent case study, and invaluable to those enduring BFS.
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I think I might agree. I have tried so many things with my BFS over the last 11 years. I am now convinced that intravenous acyclovir is the way forward as I was with a herpes carrier 11 years ago. Have you heard of any cases of BFS treated in this way yet?
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That's an interesting hypothesis. I haven't been tested for herpes for a long time so maybe I should try that. It's been almost a year and a half of twitching, it's basically a curse. I've started keeping a health journal to see if I can find any patterns. I've seen a few different neurologists now, each one gave me a different benzo, tried Pregabalin, Gabapentin, and Clonazepam, all of which made the fasciculations worse. The only things that improved it a bit was when I got back onto my hypertension meds, Exforge, and the twitching reduced a lot. I've also reduced dairy and eliminated caffeine from my diet which also helped a little.
It's so frustrating because there's no one big clue that helps any of the doctors make a decision about what to do. Everything in my medical reports are not strong enough to support any lead. For example, I've had numerous blood tests, and every other time I go, my phosphorous is low. Over the past year since this started, my bilirubin has increased from low to elevated, and my CRP is elevated now. The only other thing are a few benign cysts on my kidneys, and one small cyst which I need to follow up on. If I dig into any of that, none of it leads to anything that would explain the twitching. Sigh...