Tongue Fasciculations Driving me nuts

Information about how to manage or reduce the severity of BFS symptoms

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Tongue Fasciculations Driving me nuts

Postby ucdguy88 on May 23rd, 2012, 8:24 pm

Hey everyone,

it's been a while since I've been on here but I've had a couple of bad days. My tongue has been twitching every day for the past couple of months and it freaks me out so much. It's scalloped too from biting it. I went to see a doctor about 2-3 months ago and she noticed them and said " well I don't know, it could be a movement disorder but I think its much of the same thing you've been experiencing".

Well thats something you don't want to hear but whatever. My main question is- Has anyone else with BFS had the all over twitches for a long time and then suddenly the tongue starts to as well? I feel like this is my new "hotspot". I still remain undiagnosed technically but my psychiatrist says its anxiety with a severe physical component.

PS Klonopin is a GODSEND.
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Re: Tongue Fasciculations Driving me nuts

Postby plainslady on May 23rd, 2012, 11:18 pm

I'm sure Matt will reply to you soon...I had ZERO tongue twitches for the first several months of twitching. It's only been the past couple of months I have noticed more of them, although mine aren't 24/7. They do bother me more than the other twitches, and I notice every single one I get. Sorry I couldn't be more help....though I will add I notice an increase in mine when I am anxious....along with a sort of electrical type sensation that goes through my tongue.

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Re: Tongue Fasciculations Driving me nuts

Postby bobajojo on May 24th, 2012, 6:51 am

ucdguy88,
ABSOLUTELY! I got my first tongue twitch after 3 months of bodywide twitching. Now (a year into BFS), my tongue twitches all day. Little flickers, big thumpers in the middle, a pulling spasm type twitch in the front left part of my tongue, etc. Just yesterday I got a new one... it was a very fast vibrating twitch at the very tip. I never would have noticed it except that I am comstantly resting my tongue between my lips and I could easily feel it. I hate the tongue twitches. I want to cut it off! -Matt
Over 10 billion twitches since May 2011.
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Re: Tongue Fasciculations Driving me nuts

Postby Jujulia on May 24th, 2012, 9:02 am

I've started to feel some tongue fascics approximately six or seven months after the onset (bfs). A couple of days/weeks (I can't remember exactly) before getting them, I remember reading scary stuff about *** and tongue twitching on the internet and said to my mom: "at least I don't have this crap so there is hope!" I shouldn't have said that...

I feel tongue twitches once in a while (everyday) but I cannot tell you for sure if I have them constantly since I decided to stop looking at my tongue in the mirror (last time I did it I freaked out big time because I saw stuff that I was not feeling). :shock:
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Re: Tongue Fasciculations Driving me nuts

Postby ucdguy88 on May 24th, 2012, 11:21 pm

I'm starting to think that in some cases it's more severe than others.It's like a spectrum disorder if you look at everyones post's on here.

If I think about this rationally, this is a form of peripheral nerve hyperexcitability which is an encompassing term for: BFS, BFCS, Neuromyotonia (Issacs Syndrome).

All of this comes and goes but hotspots seem to stay for a long time and then just stop. And matt, i read one of your posts about this possibly being from the vagus nerve. Can you elaborate and if there is any literature what is the title of the articles? Does klonopin or alcohol subdue your twitches and fatigue? Let me know =)
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Re: Tongue Fasciculations Driving me nuts

Postby carphia on June 10th, 2012, 6:29 pm

ucdguy88,

I started BFS over three years ago, and I did not develop my tongue twitches until a little over a year in. I really didn't think my tongue had the capability to twitch in the same concept that my body does elsewhere, but then again you have to remember it's a muscle like everything else. So yes, mine didn't develop till way later. Mine buzzes and twitches sometimes daily, and other times it will take a break for a few days and return to its normal pattern. I definitely bite my tongue and cheeks alot, so my mouth always feels weird. Probably from concentrating too much on my mouth that I end up biting myself anyway. No worries, sounds like general BFS to me, anxiety may be to blame for the increased activity you got going there, I know I can say that def happens to me when my anxiety is high. hope this helps.


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