question for all twitchers here ???

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

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question for all twitchers here ???

Postby bianca21 on August 12th, 2004, 1:43 pm

hello everyone out here ,
i twitch now for 6 a 7 months , but my question is how often do you twitch because the most of you seem to 24/7 twitching ..
I twitch sometimes .. i can count it on my fingers i guess 5 to 10 times a day .. some times less than 5 when i am not paying attention on it ...

greetz from a twitchergirl from Holland ( Netherlands ) :) 21 years old :wink:
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Postby Floater on August 12th, 2004, 5:42 pm

twitching randomly through the day..not much,,but some days alot..its mostly buzzing, tingling, pain, and small twitches that feel like a burst of air in a muscle all over. i cant count,, but i guess i get a good visable twitch about every 3 minutes during stress. you can see them sometimes constantly in the calves and the arch of my feet.. i get hot spots in the tendon by my elbow always,, sometimes my biceps and in my hand, thigh, rare on the torso.
make it go away!
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Postby Stephanie on August 12th, 2004, 9:47 pm

My twitches range from one per second to every few minutes 24/7. Sometimes I'm not aware of them because I am engrossed in something else and at this point I am used to them
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Postby Saundra Hearn on August 13th, 2004, 1:41 am

I have been twitching for 5 months now, and just today I was thinking I should try and keep count, but I don't know if I could, cause sometimes it is quite often, and then there are days just a few, however I did notice today that mine were big thumpers and that dosen't happen everyday.
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Postby Ava on August 15th, 2004, 12:41 am

Ditto to Stephanie's frequency - literally every time I think about it there is a twitch.

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Postby tristan on August 17th, 2004, 8:36 am

heya Bianca,

Here another twitcher from the netherlands. It seems the frequency of my twitches come and go in waves. When i first noticed i twitched very often, almost no time when i was not twitching. Then gradually became less and less but not quite gone. I am just back from a vaction when it was almost gone. The day after i came back (and a few days before going back to work) the frequency went up all of a sudden.

So perhaps its related to stress/lack of sleep (boy was it warm the last week)

Groeten uit Alkmaar :D
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Postby bianca21 on August 17th, 2004, 12:37 pm

Hey hello there tristian :D ,

Funny to meet a person from holland too hhehehe
I m sorry to here that you are still twitching some times .. I twitch too but when i am not paying attention on it it's like it almost gone !! :)
Ive talked about it every time with my dr and he says its during stress and anxiaty too .. when i have a happy day i didn't notice them at all !!
So i think in my case its true .. it is the stress and anxiaty .. I have a horrible life story especially in my youth.. and put those things away inside me .. i think my earlyer problems are all coming out and they have an effect on my body and mind .

ps : How was youre vaccatian ?? And where have you been ??
Greetz back from Hollanda , Emmen :P (Drenthe )
How far is far enough when youre not whit me ? How close is close enough when you are with me ? How much is love when you say that you love me ?
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Postby tristan on August 18th, 2004, 1:44 am

Another question. You and allot of other people on this forum talk about 'ear ringing' What is that like how would you describe it? I had some sounds in my ear that that sounded like digital screeching. Like when your computer crahses while playing music very short and only twice when i just wake. After that (i think it was after) my heartbeat went up an started sweating and getting warm. This stopped after 10 minutes orso... Probably also stress again?

Vacation was nice, went to limburg. Just to do nothing. That seemed to work. Especially since the twitches returned when i came back home. :roll:
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tinnitus

Postby Slavin Balen on August 18th, 2004, 7:34 am

I got tinnitus a year before I started twitching. It happened last year in my left ear. I was terrified about beginning of Meniere Syndrom. Lucky me; it isn't.
Any connection between BFS and ear ringing?
Does anybody know?
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Re: tinnitus

Postby bianca21 on August 18th, 2004, 8:06 am

well i sometimes got a piep in my ears .. and its only for a fiew seconds so i am not paying any attention on it .. i think the stress can do a lot with youre body .. when i am not thinking of all the things that go trough my body i dont even feel anything :D I went to my doc for my ears and he looked at is and says the anxoaity or stress or a lot of thing can cause this .
So dont worry about it .. a lot of people have this even healthy peoply who i have aked it have it
How far is far enough when youre not whit me ? How close is close enough when you are with me ? How much is love when you say that you love me ?
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twitching

Postby Oswy on August 21st, 2004, 12:30 pm

bianca21,

"hello everyone out here ,
i twitch now for 6 a 7 months , but my question is how often do you twitch because the most of you seem to 24/7 twitching ..
I twitch sometimes .. i can count it on my fingers i guess 5 to 10 times a day .. some times less than 5 when i am not paying attention on it ... "


Hi, When I first experienced my BFS I only had twitching in my eyelids, the muscles under my eyes and in the bridge of my nose. The episodes crept in, lasting maybe five minutes and not returning for maybe a few days, mybe even a couple of weeks. As the months went on, however, the episodes would last longer and the time between the episodes would diminish. After a couple of years of this I was getting the twitches virtually constantly, and this hasn't now changed for the last 14 years or so.

What I've found over the years is that at different times, different parts of my body became particularly active (in twitching) and then "calmed down" - e.g. for a while my lips were very twitchy, another time my forearms were very twitchy, both of these areas have now diminished to a relatively low level for me now - i.e. occasional and usually slight twitching only. The only exception to all this is my calf muscles, they twich quite strongly, constantly and they also buzz constantly, this never really goes away for me and is the most difficult aspect of BFS I have to cope with as it is so dominating a sensation.

From what I understand some people only experience BFS for a short time, a few months or a couple of years or so, and then it fades away, I strongly suspect, however, 16 years on, that I'm among those who aren't going to lose their BFS, but I'm reconciled to that now - after some low periods.

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Postby Ava on August 21st, 2004, 3:30 pm

Wow Oswy,

After 16 years of calf twitch, etc. you are most likely the resident expert on this site. I have the 24/7 Calf twitch too, but at four months of bfs, I hold out hope it will someday subside. I was getting facial twitches, lips, eyes, nose etc. but those are to a minimum now. Now its the calfs, and roving just about everywhere else on my body.

Have you ever taken Klonopin for calf twitch? It really helped me but I am off it because it made me too tired.

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ear ringing

Postby Donna L. on August 23rd, 2004, 10:37 am

Hi Everyone,
I have just reached the 3 month mark of twitching and I also have ear ringing as a symptom. I always wondered if it was related or not. My twitching started after a sinus infection and alot of anxiety. When I had the sinus infection my Dr told me my ears were completely plugged up with wax, which I experienced as kind of a static sound everytime I bent over. I have had ear ringing (not severe) ever since. The twitching started 2 weeks after the antibiotics for the infection. I am still suffering the ALS fear although some days are not as bad now. I will feel so much better if I get to the 6 month mark with no weakness. I know the chances of ALS are slim but I have heard that if you go 6 months with twitching and no weakness it is pretty much a sure thing of no ALS. I have had a neuro visit and the Dr. said she did not believe I had ALS, she did the neuro exam and found normal strength. She didn't think I needed an EMG. I di go back for a follow up in Sept.

It is so good to talk to people who understand this!
Thanks,
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Postby Stephanie on August 23rd, 2004, 2:01 pm

I do not think ear ringing is part of bfs. The twitching could have started due to the infection if it was bad enough to stress out your body. I've been twitching for 2 years now and I still have mental relapses, mostly because I have kids and I don't want to miss a minute of their lives. It makes me completely irrational at times. If you've been twitching for 3 months w/no weakness and a normal neuro exam then you don't have to worry. Now if I could only listen to my own advice...
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Postby Tam on August 23rd, 2004, 4:43 pm

I had ear ringing/noise for several months. I thought it would never end! It tapered off gradually and now is intermittently a problem. I feel it is related to BFS because it was prevalent during a period when my BFS was at it's worst.
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