Ending Long-term Twitch Suffering

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CocoFalco.Dop

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I twitched for 13 years. Then I found a medicine that helps. I had to take it for many months before it really "hit" me, I mean that the twitches calmed down slowly during the months. I started to take this medicine about 1,5 years ago and now I don't know when I should stop. Do I have to take it for the rest of my life or do the twitches come back? Doctors don't know or/and they are not very interested in my twitching, because it doesn't seem to be sympton of anything serious.I don't want to go that way again - wait and suffer for months before the medicine helps again. And maybe it doesn't even help anymore, if I once stop?
 
Mermaid,Did you take Neurotol Slow (Carbamazepine)? Can you give us some details about the effect on your twitching and side effects? Are 100% Twitch free?BTW, Ask 43RichyThe43rd hes currently on treatment with that same drug, i think he can give you some feedback.Good Luck,Eduardo
 
Eduardo and Becky, Neurotol Slow is my medicine. My twitching disappeared slowly during one year use. At first I could only sleep better though I felt the twitching when I went to bed. But some months later, maybe 4-5 months, the twitching had lessened something like 70 % from what it was before I started to take the med. And so it went completely away slowly during a couple of more months. There were some periods when the twitches were a little bit stronger again and then I felt very frustrated. Thank good it was only temporal. Now I'm almost twitch free - there might be a few twitches during a day but most of the days I don't twitch at all (or don't notice them). A few means 3-5. I think I'm on a "normal" level now, twitch as much as any of us.About side effects: First months I felt a little bit tired, but not anymore. I also have dry eyes but this is more connected to my thyroid problem than Neurotol Slow, I think.13 years I twitched all the time, mainly in my calfs, but other places too many times in a day.Is this enough information for you :)?I will contact 43RichyThe43rd, thanks for the tip!
 
I also take the same medication. But it is called Tegretol in the U.S. There is also a generic name which is very inexpensive here.I took it for a few months and the twitching went down. About 50% at first. But I stuck with it. Now at 10 months I really don't feel them at all. I have not noticed a twitch in weeks in my calf. I still get them in my ankle, but interestingly this doesn't bother me.My perscription ends after a year. The neurologist I am working with tells me his experience is the maxiumum benefit is achieved in 1 year. After that he will taper me off.I asked my primary care doctor about it and he says I can take it indefinitely. He tells me that the drug has been around a while and the side effects are fairly well known. BTW I guess it is taken for psychological reasons as well.I find this interesting from my primary doctor considering the medication has a 'black box warning label' in the U.S.Actually right now I am afraid to stop taking it because the twitching might come back. My plan is to ask for a decrease in the medication and keep decreasing it as I feel brave.BTW there are messages on this board indicating someone who took it for 3 years and then stopped and it went away.I am glad this has also worked for you. Maybe others will read this and find some relief too.-43RichyThe43rd
 
A few more items about Tegretol (Carbamazepine).1. The first 1-2 weeks when taking this medication you will fell drowsey. This should pass. But be very careful when driving. It is worse than alcholol. Get enough sleep and do not start taking this medication during a stressful time of your life. It is going to make you woozy for a while.A neurologist told me that there was a case of a fatal car accident when taking this med. Again this will pass. But it will take time. USE CAUTION2. I am wonding what Mermaid's experience is, but I have not had a drink of alcohol since taking this med. Perscriptions and booze do not mix. You should give up all drinking.-43RichyThe43rd
 
43RichyThe43rd, thanks for the information :)!My prescription was also for one year at first, but my doctor (not the same who ordered the med) wrote another for one. The reason I'm worried is that when I forget to take a pill, the twitches come back for a day or two. Not strong, but they come anyway. So I think I'm not "ready" to stop.On the other hand, I've also been told this is pretty safe medicine even though there is a red warning triangle on the side of the box. Epilepsy patients take it constantly, and much larger amounts than I do.I have only a few months left with this prescription. Maybe my doctor (new one again) doesn't give it to me anymore. But I've read this medication can't be stopped suddenly, the amounts should be decreased slowly just like you plan to do, 43RichyThe43rd. I think it's your doctors job to tell you this and prescribe you enough medicine to end the cure.Alcohol question: I have had a few drinks sometimes (about 3-4 times a year) and have noticed I get drunk much easier :D) I mean, I don't have to drink more than one beer and I feel tipsy. Maybe I should give up alcohol completely, but since the side effect is this, I don't think I have to. My doctor also told me one or two drinks sometimes is not serious. But it has to stay that way.
 

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