Carbamazepine

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

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Carbamazepine

Postby markalanious on October 12th, 2012, 7:31 am

Hi guys

Docs have just presribed Carbamazepine to me - anybody any luck with it?
what I was putting up with after a year

http://www.youtube.com/watch?v=960I5t4K2pE
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Re: Carbamazepine

Postby chrissi on October 12th, 2012, 8:13 am

If you get a rush, stop it immediately, that is all I can say...do not suspect your new softener like I did :roll:
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Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: Carbamazepine

Postby TwitchyDoc on October 12th, 2012, 8:45 am

Life saver for me, no rash (side effect mentioned by chrissi) and like 60-80% decrease in twitching. Few studies suggested it does help, yet a know from other members here that it is not case of everone :(
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Re: Carbamazepine

Postby seventhcandle on October 12th, 2012, 12:34 pm

TwitchyDoc wrote:Life saver for me, no rash (side effect mentioned by chrissi) and like 60-80% decrease in twitching. Few studies suggested it does help, yet a know from other members here that it is not case of everone :(


Are you still on it?
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Carbamazepine

Postby markalanious on October 15th, 2012, 6:05 am

Hi TwitchyDoc - can you tell me how much Carbamazepine you were taking daily?

I've been started on 100mg and it's not making any impact as yet. The doc told me i can go up to 200mg after 2 weeks if i want.
what I was putting up with after a year

http://www.youtube.com/watch?v=960I5t4K2pE
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Re: Carbamazepine

Postby Scandinavian girl on October 15th, 2012, 3:44 pm

can you tell me more about your experiences? i'm thinking of asking my doctor to get me a prescription. chrissi, have you bad experiences with it? since your earlier story reminds me of mine i really would like to hear your experiences. hugs
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Re: Carbamazepine

Postby TwitchyDoc on October 16th, 2012, 1:27 am

100 or 200 mg is nothing and will not work for usual BFS unless your doctor means 200mg 3x a day...GB is treated with 300mg at least. Usual effective dosage for treating e.g. Isaacs is 600mg or more. I am still on it, no side effects.
BTW for spasms, e.g., the dosage can be even 1200mg per day! (you can verify here http://xa.yimg.com/kq/groups/20566474/6 ... nerves.pdf)
For ALS patients, to relieve from cramps and fasciculations, 600mg is considered as minimal dosage..

As for my experience, the twitching is about 60-70% less. Depends on factors I still cannot discover :(
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Re: Carbamazepine

Postby seventhcandle on October 19th, 2012, 1:06 pm

TwitchyDoc wrote:100 or 200 mg is nothing and will not work for usual BFS unless your doctor means 200mg 3x a day...GB is treated with 300mg at least. Usual effective dosage for treating e.g. Isaacs is 600mg or more. I am still on it, no side effects.
BTW for spasms, e.g., the dosage can be even 1200mg per day! (you can verify here http://xa.yimg.com/kq/groups/20566474/6 ... nerves.pdf)
For ALS patients, to relieve from cramps and fasciculations, 600mg is considered as minimal dosage..

As for my experience, the twitching is about 60-70% less. Depends on factors I still cannot discover :(


Twitchy Doc - So what is your dosage that you've found relief with and how long did it take for that relief to occur? I ask because my BFS is very, very bad at the moment. Mine was definitely caused my medication and is similar to Matt's in many ways. Do you think that Carbamezapine might help someone like me or is it more for stress-related twitching? Any additional information you can provide here would be greatly appreciated by many, including myself. Thanks.
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
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Re: Carbamazepine

Postby TwitchyDoc on October 22nd, 2012, 8:31 am

600mg / day, the usual dosage (1-1-1 200mg). The relief for me was always after 1-2 days and lasted like 2 weeks. Unfortunately the effect is not permanent, at least for me it never has been.
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Re: Carbamazepine

Postby seventhcandle on October 22nd, 2012, 4:05 pm

TwitchyDoc wrote:600mg / day, the usual dosage (1-1-1 200mg). The relief for me was always after 1-2 days and lasted like 2 weeks. Unfortunately the effect is not permanent, at least for me it never has been.


So are you at a point now where you don't notice any improvement in symptoms while on the tegretol and if you want more improvement, you would have to up the dose and then do it again and again and again until it's just too *beep* high and it doesn't work anymore or the side effects outweigh the benefits?

Also, have you had any experience trying Lamictal? I know one poster here, msm, I believe claimed to have 98% relief in her fasics once she got up to a high enough dose of it. Is that a common experience with that drug?
Been on the BFS journey since 6/26/12...

Twitch way do I go from here?

BFS does get better with time. Almost two years in and able to do almost everything I could do before I had this condition. Still twitching away of course...
User avatar
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Re: Carbamazepine

Postby TwitchyDoc on October 23rd, 2012, 7:50 am

What I meant was - you start taking it, it works for 2-3 weeks. Then you go off for like a month. Then you start again and it (for me) works again for another 2-3 weeks. So you do not increase the dosage. Actually I tried that and it did not work.
I have never had any side effect. have not tried Lamictal so far but going to try instead of next round of Tegretol.
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

Postby Scandinavian girl on October 24th, 2012, 1:36 pm

So strange! How can this be explained? Why effictive for a couple of weeks and then the effect dies out? Have any doctor been able to explain this for you? This can not be the normal usage for these kinds of meds...one usually stands on it for a long time..
I want to try this med and have talked to my doctor about it. He has no idea what is wrong with me but says its ok to try tegretol..when I'm finshed with my antib in two small weeks.
How long breaks do you take, and when you start it again - do you get strait to 600 mg a day, or to you slowly increase the dosage?
Hope you answer me.
hugs
Scandinavian girl
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Re: Carbamazepine

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