Stuck in a Funk: BFS and Tongue Twitches

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bfhopeful2

Well-known member
Im in a funk and need to write this out. I have had bfs for 3 years. My symptoms come and go and drive me crazy. I have had 4 clean emg's and the last one included bulbar region and that was only 4 months ago. I have accepted all the other twitches as benign. I am actually ok with them. But everytime my tongue acts up i lose my mind. I have written so many times that im over it, healed etc. The truth is that i feel that way when i write it, but my tongue twitches and im right back to panic. Right now my tongue has been twitching in the same place for days. That tiny heart beat at the tip with randoms elsewhere. I cant help but fear the worst even with strong evidence against it. I will say it outloud, i am affraid of dying and the loss of control. Im on meds, did therapy for years. I dont know what else to do. I signed up for anxietycentre.com, and they make great points, but its all speculation from what i can tell. mainstream medicine hasnt confirmed their claims. I feel so black and white right now. Anyone else here feel hopeless? How did you pull yourself out if it? I swear in rhe only veteren to not get past this crap.
 
Hello, i know im new here but i can relate to how you feel, i recon that the fact you have had this a long time with twitches from what ive read and you already know is that it is most highly unlikely you have anything sinister, plus all the clean results you have...i have not seen any professional yet and no tests so i am constantly wondering worrying in a real terrible state and thoughts the same as you.......i drive myself insane at time...i am back on mirtazapine as its helped me in the past with other neuro stuff and im praying it helps again.......it wont help the twitches most prob but it helps to calm and be more rational...i have a neuro app ...not till 24th July by then i will have had this 5 months ...i really hate the T.twitches but i'm really concentrating that many here have/had them and all ok.....i also worry that i dont have enough other twitches :rolleyes: i have had them pretty much everywhere but they dont persist only the eyelid ones do....and now they've been outdone with T. twitch....... i am so glad i found this forum i know im the least person here to help but just knowing were not alone and it doesn't mean T. tw...are any more sinister.....
 
I completely understand. Yesterday was probably the worst tongue twitching day I've had since this crap started for me. I now have tiny flickers and fascics appearing all over... Both sides, the middle, and way in the back. But the worst one for me is this pulling twitch I get in the front left side. It's like my tongue is super sensitive and even the slightest irritation will trigger that pulling twitch. I've posted a video of it on here before. Lastly, if I pinch the tip of my tongue between my lips, it just vibrates like a super fast twitch. This is constant. I'm constantly talking myself down because I have enough evidence to know this is benign but it's not always easy. For me, it worries me because it's clearly getting worse and I wonder what it will be like a year from now? Ugggghhhh.... BFS is a constant mental battle. One note of reassurance is that my moms calves are twitching just like mine and I had her stick out her tongue and rest it and it was flickering all over. So weird!
 
I had that same pulling twitch for a while, but it would only come if i induced it. It lasted for about a month, maybe longer. Then it just dissapeared. I am hoping this one works out the same. It seems to be dying down. Cant feel as much. I dunno.
 
Yeah I can induce it by pressing my tongue against my teeth of my cheeks but it also happens randomly. Been happening for 3 months now and I'm hoping it just goes away.
 
The more i think about this the more i realise it is just a waste of time to worry about. Lets say it is the big nasty, which we know its not. What can we do? Catch it early lol? Researching only keeps it on my mind and i guarantee makes it worse. Even if i find something that makes me feel better, it lasts only for a few hours. If i find something i dont like it can bother me forever. Not saying that i can just stop freaking out, but im going to try. Because no matter what it is worrying will only make it worse. Benign or als there is no treatment, you cant catch it early and you cant make it go away. It just is what it is. So either way i can live the rest of my life in fear or live it to the fullest. I could live to be 100, die in a car crash tomorrow. But i am trying to chose to live for whatever time i have left. Its going to be hard and i know its not an overnight thing. I also know ive said this before, kind of like quiting smoking. But every second presents an opportunity for change. And i am going to try.
 
I was telling everyone on chat last night that I'm about ready to cut my tongue out. I had grown used to all the other twitches and sensations of BFS. I would always read here on the boards and tell myself "well, at least your tongue doesn't twitch." I considered it minor BFS victory to not be a tongue twitcher. The night I felt it for the first time I m not afraid to admit it...I panicked. I had convinced myself that because I'd been twitching for so many months I was "out of the woods" when it came to my tongue. It started as just a few flickers and electrical type feelings, but no has evolved into definite thumpers and the feeling of Pop Rocks sitting at the end of my tongue. This seems to be my most vulnerable hotspot when it comes to stress. The last two or three days its been pretty relentless, which coincides with a big jump in stress I've been going through. I know its no different than the others, but they sure do feel more intimidating and worrisome. Frances
 
One of the very first twitches I had three years ago when this all started was in my tongue. It was right after eating ice cream. It was a clear flicker on the tip, same that I have now. The only difference is at that time I did not know of ALS, or anything like it. I treated it the same as I would of an eye twitch. Blamed it on stress and called it a day. In a day, maybe less, it was gone. I guess what is fueling the fire now is that I have had it for days. But I am really trying not to think about it. It is working to some degree. I just took my puppy to the dog park and hardly thought about it at all. Everytime I do, I just keep telling myself: Stop, you are not going to drive yourself crazy again. There is nothing that can be done. You just have to trust your doctor...It is hard, as I just started...but in time I am hoping it gets easier.
 
Forget all about tongue twitches.... as long as your speech is normal and you can still drink and chew food around your mouth you are OK Thats all you have to tell yourself.
 
You are right...when your in the hole it seems hard to see the light. I woke up this morning and my tongue has mostly stopped. With the twitching stopped it is easier to grasp.
 

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