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Discussion Starter · #1 ·
I'm almost 30 now and was diagnosed with essential tremor quite some years ago. I don't know exactly when it started but I do remember having it much earlier in my young life already.

At first, I was just glad I knew what it was (my condition had a name!), but it began to bother me more and more over the years. I have it over my full body (hands, abdominal muscles, legs, but most emberassingly: my face: mouth/smile tremors and eyelid tremors).

I've tried Propranolol (up to 40mg 3 times a day) in combination with Xanax (up to 0,5mg as needed), and although this does seem to help with the hand tremors, don't find much relieve in my facial tremors.

I have my tremors all the time (also when I'm completely alone and relaxed, but stress does make it much worse).

Most of the time when I try to laugh, my mouth starts to tremble like crazy. The medication doesn't seem to help with this. People notice this, so sometimes I just don't laugh as if I don't find it funny (makes me look arrogant) or I try to act like I didn't hear it or I look away. Just because I don't want to be embarassed.

This is really getting to me because I have a very social life. When it's my birthday I try to drink enough (alcohol seems to solve this trembling mouth problem) before I have to open any presents for example.

I'm always anticipating situations where I will have to laugh and my trembling mouth will get noticed (like meeting and greeting new people, business meetings, social events, etc...) and even try to avoid some situations (people DO see it, my essential tremor doctor even asked me to videotape it, because it's very unusual and rare he said).

So it's also having a psychological effect on me. It's really starting to ruin my life, because laughing is one of the most normal things people should be able to do. I don't want to be drunk to be able to laugh normally. Even grinning will show the tremors.

Now the doctor has prescribed me Clonazepam (Rivotril) - I'll have to build this up to 3 x 0,5mg / day. I can still take 40mg Propranolol as needed in combination with this.

This is the first time I'll use a benzo on a daily basis (the Xanax I only used as needed). We will probably build up the dose if needed and combine it with long-lasting propranolol I guess. If that doesn't work, we can try botox injections, but I'm not comfortable with that at all.

Do you think I might find relieve in Clonazepam for my facial tremors (I don't care too much about the other tremors)? Does anyone recognize this and have any other things to share with me? Any experiences with these drugs and this particular problem and dosage?

I would love to talk to other people with this condition.

Thank you for listening.

Some resources (facial tremors aren't described in the literature often, and no treatment has been described at all, only some cases that confirm the condition):
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1031891/
http://www.ncbi.nlm.nih.gov/pubmed/19489077
http://en.wikipedia.org/wiki/Essential_tremor
 

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Your not alone my dear. I used to have Tourettes syndrome and would shake my whole head uncontrollably. All the time. It gave me migraine. Trust me, people don't judge something that is uncontrollable. Make a joke out of it if it makes you feel more comfortable. I understand.
 

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Discussion Starter · #3 ·
Thank you for your feedback. I understand your point about making a joke about it, but it's pretty hard to do if the one thing that's upsetting me the most is not being able to smile without mouth/facial tremors.

When you make a joke, people expect you to smile a bit to let let them know it's a joke, but it's hard because this is exactly the thing I'm not able to do normally and is making me uncomfortable.
 

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Dido. It was hard for me to accept it with the migraines it caused. But I did and was much happier. You cannot change the fact that you have it. It is pointless to let it bring you down. You must learn how to live with it. Yes it seems, gets annoying. But when you accept it. The tremors will just occur without you noticing it. You've heard the saying "doesn't hurt them, if they don't know it.". Same with you.
 

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OP, I have the same problem, but to a lesser extent. It's amazing how just a small amount of alcohol can reduce the tremors so effectively. It that the case with you too?

For me, the tremors happen when I semi-tense my muscles. For example, I can smile fully, but if I gradually try to relax the smile, my facial muscles will start trembling. It's not really a big problem for me ATM. I hope it doesn't get any worse though.
 

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Discussion Starter · #6 ·
Yes, alcohol does help quite a bit, but that's not something I can use before meetings etc of course... I does help me with other social events though, but the day after the tremor will be worse, or even when the alcohol effect starts fading away, which is quite annoying.

Do you have essential tremor or only SA? I do recognize the bit about that it's worse when you relax your smile after a full smile, but I also have it when I do a full smile an keep it for a few moments/seconds.
 

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I was glad and sad to have read this.

I have no essential tremors, but about 2 years ago I started noticing that my face would really hurt, the best term I could use to describe was "claudication". Over the years my tongue, jaw, and headache pain have increased to unbearable levels. In September I developed facial intention tremors, first just when smiling. Now when; smiling, closing my eyes, lifting my nose, frowning, and closing my jaw (almost entirely CN 7).

I am a third year medical student and am just dumb founded as to how much money I have had to borrow just to find answers. I agree with you about avoiding situations where you may laugh, smile, or be asked to speak alot (my tongue will tire, and muscles will fatigue). I have two children to whom I make beavis and butthead noices without facial movement when they make me laugh...because it hurts so bad to move my mouth. I go home after clinicals and cannot find the stregnth to keep my head out of a pillow due to the pain which I had to endure without medication for the last 12 hours or so. I have been told to "speak english" because as the headache worsens, the muscle tremors worsen, and the tongue fatigues...this is so hurtful.

I hope to finds answers, but so many physicians are quick to give up and just pass me off to someone else (since this is bilateral and I have no apparent autoimmune disorders)...who can't see me for 4 months. It is horrible to have this pain and lack of ability to express yourself with a smile...or with tears anymore as crying is excruciatingly painful.

Should I find anything I will return to tell. Good luck.
 

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I also have this problem. Sorry for my mistakes, because I do not speak English very well. I take propranolol and sometimes I take Xanax too. Always needed to drink a lot in social situations for these symptoms pass. My life is very difficult because people here in Brazil are always smiling, but I can not. Lately my problem is getting worse too, and now neither medication nor alcohol is doing more effect. The tremors are very strong. Does anyone know if Botox solve? Or is there another solution? This is unbearable! : \

Sorry for the mistakes of English.
 

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Discussion Starter · #11 ·
Never tried Botox... Tried all kinds of medication, it helps in general with tremors, not too much for the mouth tremors when smiling (currently on Propranolol + Clonazepam & Xanax as needed)
 

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That happens to me too, sometimes when I'm alone and relaxed, the muscles near my mouth start to tremble and my eyelids twitch...I guess it's all anxiety related, in my experience, they usually disappear naturally but it takes a while.
 

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Let the tremors be, and even trigger and observe them. They aren't the disease, but the cure. The tension moving inside your body makes you shake because your muscles are stiff. When you drink or take some other sedative/muscle relaxant, the tension is still there and still moving, but you're not shaking because your body isn't as stiff. With some practice, you can even feel that tension circulate inside you.

Once you have processed/released the tension, there won't be any more shaking. But it gets worse before it gets better, and you have to allow that to happen; otherwise, you'll be stuck in the limbo.
 

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Discussion Starter · #14 ·
That's fine when it's not part of a medical condition, but not very useful when it is (like it's the case with a diagnosed essential tremor). SA might become a part of it because of the physical effects ; and worsen it ; but it will be always there with ET patients... In this particular case it's good to "only" have SA cause I agree you can probably try to work on it :)
 

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Soloution

Hello,
Guys I have this problem too..
I found a way to cure this, I dont know how much it will work for you but right now I've just tried it and thanks God I can know smile with so much better condition..

When you're alone, try to smile and if your muscles start to shake, massage them with your fingers, shake them with your fingers while you're still smiling, contract your face muscles more and less till you feel relaxed when you're releasing your muscles, try this for other situations of contracting your face muscles, contract them hardly and softly and massage them, it helped me now and I feel so much comfortable... I wish this feeling continue for ever... I hate those uncontrolable shakings...
I wanted to share my feeling with you, I wish this way be effective and help you... And please accept my appologise if this couldn't help...
Good luck for you all
 

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This sometimes happens to me when I kiss someone new. It's pretty embarrassing.
 
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