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Benign fasciculation syndrome (BFS)
Brain & Nervous System | Last Active: 18 hours ago | Replies (416)Comment receiving replies
I’m a 29 year old male who has had continuous twitching for roughly two years now. It happens all over my body from head to toes and there is no body part that is exempt from the fasciculations. I finally got an EMG done and was diagnosed with BFS. The twitching continuously interrupts my sleeping pattern and frequently distracts me if I’m at work. I think the biggest issue I have is how anxiety driven is has caused me to be for the past couple of years. My neurologist prescribed me a medication called carbamazepine but after having my doctor tell me about the many side effects it causes and me needing to constantly get blood work done because of it commonly messing with your blood count I’m feeling like this medication is a little extreme. I guess I’m mainly here to get advice on how I should proceed now.
Replies to "I’m a 29 year old male who has had continuous twitching for roughly two years now...."
Anybody experience muscular pain in the shoulders and thighs , seems to ache more when resting and it’s pretty painful at times .
@partialperson I am going to try the carbamazepine and see how it goes and will let you know if I experience any type of side effects. @bramhamants i don’t experience any type of muscular pain or soreness. I do experience vertigo issues and numbness from time to time but my neurologist said that’s more than likely from the stress / anxiety. @dhansen78 unfortunately I’m in Georgia, so unless you have ALS or are entering the ending stages of cancer there’s no way you’ll be eligible for medical marijuana. I will say I was a chronic user recreationally in college and I never experienced anxiety or twitching during those times. I’m almost tempted to look into anti anxiety medication like klonopin. Has anybody here had experience with benzodiazepine medications?
@dhansen78 my apologies I see now your comment was in response to somebody else.
I personally don't think marijuana helps with BFS. It can almost make things worse as it can cause paranoia. I tried it and it didn't seem to make my symptoms better or worse.
I’ve had BFS for a little under 5 years now…… constant twitching all over though mostly one twitch and done…. It doesn’t affect my sleep. I exercise everyday because when I exercise for those two hours a day I feel no twitching…… anxiety triggers the twitching as does caffeine for me…. But irregardless I twitch all day long when I’m not moving….. I would never suggest medication because the side effects are probably worse than the condition….. meditation may help…. But the simple answer that people give is just live with it of course doesn’t work…. It never worked for me I have just had to accept this condition and work around it
I've asked this on a couple forums now, but has anyone been prescribed / taken an SSRI post BFS diagnosis and if so how did that impact you?
I connected with the chair of neurology at a major hospital group who also has BFS and his opinion was that medication side effects being worse than the disease itself. However, that's likely all a personal decision.
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I am on probably the highest levels of carbamazepine you will ever meet or speak to. My symptoms similar with a diagnosis of Peripheral Nerve Hyperexcitability, Cramp Fasciculation Syndrome Benign. For me it helped tremendously and the side effects, well nothing detrimental that I can think of ever. I am also on high levels of baclofen and gabapentin. We are looking to keep me comfortable as there is no known cure and hopefully research somewhere somehow can stop this wretched horrible mind bending uncontrollable way of life for me and others.