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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 1 day ago | Replies (415)Comment receiving replies
Didn't think this thread would go this long. I started the initial post over five years ago. I'm still twitching, not as awful as it was when it first started. No weakness or loss of ability thankfully. If I go by what I've read online, I should be clear of anything serious. I still see a neurologist once every 6 months, more for peace of mind. If I get a hotspot, I take Clonotril(Clonazepam) 0.5mg in the evening before bed for a few nights and the hotspot goes away. Whatever this is, it's a curse that will likely never go away, which makes me deeply sad. But I've learned to live with it and have a few ways to mitigate it when it gets really bad. The Reddit forum helped me a lot through this.
Replies to "Didn't think this thread would go this long. I started the initial post over five years..."
I am happy its till going!! Going on 2 years for me but like you not nearly as bad...diet and exercise has helped alot and just accepting it.
I'm somewhat in the same boat. It's been almost 2 years and the first 2-3 months were the worst. I've recently had this month or so long flare up in my upper stomach that twitches 30+ times a day. When I get that, it makes me nervous, but have mostly just learned to live with it as nothing really works. While it sucks, I'm glad to know there are others out there who can be supportive.
New sufferer here. Have the twitches all over and all day long (every 3-20 seconds a new one occurs somewhere on my body that lasts 1 second to 10 seconds), and what most folks talk about is exactly what I am dealing with. Doctor told me to take Magnesium & Vit D for now since this just started 7 days ago. Just did a regular physical without a Vitamin Deficiencies check (everything came back normal and negative), and told my doctor about this new issue right after getting results. Will have to wait before doing more tests.
Do you still do the Magnesium and Melatonin? Do you get jerks as you fall asleep as others have talked about? I do. Does the Clonazepam help considerably? I noticed over the 5 years of your suffering, that you have reported that things have been considerably better with different things (B12, Clonazepam, etc).... but then no real mention of B12 and those other things again. So, now I have purchased B12 to see what that does. I realize you were experimenting with different things, but would like to know what might work or not. I liked your diary. That is helpful.
Also, I do have herpes (had it since a teenager) and wonder if that is the culprit, like another has said. I take Valtrex as needed for flare ups because it can hurt your kidneys for some of us if you take it everyday, but now wondering if I should take it more often? Did you ever get checked for Herpes? Anyone have anymore insight on that?
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Can you elaborate on the hot spot? I had that too, eventually joined by BFS! Neurologist ruled out neuropathy and ALS. Also, prescribed Clonazepam!