Careful with Tegretol

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Careful with Tegretol

Postby TwitchyDoc on February 17th, 2013, 1:22 am

Just wanted to let you know that experimenting with Tegretol (going on and off, trying different dosage etc.) might lead you to where I am. I am a mess. I think it has somehow altered my excitability to the point that at night even the slightest movement causes fasciculations anywhere. I hope it is temporary.
I did try to gradually stop and start it but I am impatient so obviously it was not enough...
I actually cried few times, waking up every day around 3 AM and twitching terribly.
Stay well,
Docen
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Re: Careful with Tegretol

Postby chrissi on February 17th, 2013, 7:15 am

Docen I am shocked that your doctor did not tell you about that. Tegretol needs a strict plan to build up and get off, otherwiae it can really screw you up. It is not a med you can take as needed like a random Valium. Sorry to hear that you are in that mess now. My advise: even if it sucks, stop self experimenting with drugs and let your body and mind calm down. I am shocked regularly when I come to this board, how thoughtlessly doctors prescribe meds and also how thoughtless oeople take them. Meds are drugs. They can safe lives, but in many cases they do more harm to the body than benefit. They belong into the hands of skilled doctors that know their patients and accompany them during the period they take them.
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
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: Careful with Tegretol

Postby seventhcandle on March 13th, 2013, 10:57 am

TwitchyDoc wrote:Just wanted to let you know that experimenting with Tegretol (going on and off, trying different dosage etc.) might lead you to where I am. I am a mess. I think it has somehow altered my excitability to the point that at night even the slightest movement causes fasciculations anywhere. I hope it is temporary.
I did try to gradually stop and start it but I am impatient so obviously it was not enough...
I actually cried few times, waking up every day around 3 AM and twitching terribly.
Stay well,
Docen


Docen,

Just wondering if your symptoms have calmed down any since the Tegretol mess?
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: Careful with Tegretol

Postby TwitchyDoc on March 13th, 2013, 2:48 pm

Actually this is amazing. Not sure if it is the long term gluten free diet or not but I keep Tegretol (3x per day) and I twitch 3-4 times PER DAY.

As I said before, recently it has been discovered that gluten can mimic full-blown ALS and that there is a gluten intolerance that presents with neurological symptoms even without any digestion issues! I am 2 months on this diet.
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Re: Careful with Tegretol

Postby mwagner on March 13th, 2013, 3:41 pm

Docen,

Are you saying that your gluten free diet is causing you to twitch only 3-4 times a day? Wow. If I could get down to 3-4 times an hour, I'd be dancing on air!

I've been gluten free since October 2011 and it hasn't changed my twitching, unfortunately. But, it has helped in other areas (mainly gastrointestinal) and I have no intent to going back on a diet that includes gluten.

Mitra
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Re: Careful with Tegretol

Postby chicagobfs on March 13th, 2013, 4:29 pm

We will see if it continuous when you stop this drug
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Re: Careful with Tegretol

Postby TwitchyDoc on March 14th, 2013, 1:06 am

chicagobfs: Tegretol has never worked for me more than 2-3 weeks and I have been now taking it more than 4 months. I cannot say for sure but what I know is that I am fully gluten free (so no beer as well) and I twitch (the average with bad days) like 5-10 times per whole day. I feel "normal".
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Re: Careful with Tegretol

Postby seventhcandle on March 14th, 2013, 1:16 am

TwitchyDoc wrote:chicagobfs: Tegretol has never worked for me more than 2-3 weeks and I have been now taking it more than 4 months. I cannot say for sure but what I know is that I am fully gluten free (so no beer as well) and I twitch (the aquite verage with bad days) like 5-10 times per whole day. I feel "normal".


I am gluten free and it has done nothing for me. 9 months into this mess and nothing but a steady and sometimes quite dramatic increase in twitching. I get 3-5 twitches per second and have triggers ranging from food to lighting to sex which permanently worsen my symptoms.

I have been prescribed tegretol.and lamictal...I am wondering which is better to try for a case like mine.

Docen...what dose are you on now that has been so incredibly.effective?
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: Careful with Tegretol

Postby TwitchyDoc on March 14th, 2013, 2:43 am

Seventhcandle: Well I am on Tegretol on and off for 2 years and it was always somehow helpful for a while but only now when on thsi gluten free diet, I have this results. My dosage is standard 600mg (200-200-200).
A lot of people think there are on the gluten free diet because they do not eat pizza, bread etc. but do not realize gluten is almost in everything from icecreams, beer, sweets, etc. I cannot see of course it is definitely caused by that but I have never seen such a results with Tegretol in the last 2 years I have been using it.
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Re: Careful with Tegretol

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