neurotin and BEB
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Posted by: barbara ®

07/31/2003, 14:52:05
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Is there anyone out there who has had a neevative reaction on their dystonia by taking neurotin. I am positive it has worsened by condition but my doctors refuse to acknowledge it. thanks






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Re: neurotin and BEB
Re: neurotin and BEB -- barbara Top of Thread Archive
Posted by: Virginia ®

07/31/2003, 17:17:49
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I've taken neurontin and have not noticed that it had any effect on my BEB. I will add that I never took much because it put me to sleep and dried me out. A higher dosage might have had a noticeable effect, but I couldn't say.
Virginia in AL






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Neurontin
Re: neurotin and BEB -- barbara Top of Thread Archive
Posted by: Moderator-JB ®

08/12/2003, 01:35:24
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Barbara,

A medication that gives you negative side effects should be stopped ASAP. It is your body, YOU get the final vote.

I have taken Neurontin for about two years and it helps me. Other Dystonia medications that I have tried have made me worse. We are each different.

We all have a tendancy to think a doctor knows exactly what will 'fix' us. Unfortunately, most know little about BEB/Dystonia.

Take care,

Judy






Modified by Moderator-JB at Wed, Aug 13, 2003, 22:19:44

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Re: Neurontin to Judy
Re: Neurontin -- Moderator-JB Top of Thread Archive
Posted by: barbara ®

08/12/2003, 08:24:49
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Judy What was the name of the medicine available at the US that is similar to Tetrabenzadrine. Do you know how simliar it is.






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Re: Neurontin to Judy
Re: Re: Neurontin to Judy -- barbara Top of Thread Archive
Posted by: Steve-In-Tennessee ®

08/14/2003, 08:12:46
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JUDY, I AM TAKING NEUROTIN ALSO FOR MEIGE'S SYNDROME, IT DOES NOT SEEM AS IT IS WORKING VERY WELL SO MY DOCTOR ORDERED XENAZINE 25 TETRABENZADRINE FROM THE UK, IT WILL COST ME ABOUT 300.00 PER MONTH ONLY AVAILABLE FROM THE UK. I AM SLOWLY BACKING OFF THE NEUROTIN. THE NEW DRUG SEEMS TO BE HELPING A BIT BUT I DON'T THINK THAT I WILL BE ABLE TO AFFORD. STEVE






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Re: Neurontin to Judy
Re: Re: Neurontin to Judy -- barbara Top of Thread Archive
Posted by: Moderator-JB ®

08/14/2003, 20:11:16
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Tegretol, I think.

You might want to look it up in a medical search engine.

Judy





Related link: http://www.blepharospasm.org/search.html

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Re: Neurontin to Judy
Re: Re: Neurontin to Judy -- Moderator-JB Top of Thread Archive
Posted by: Nilda in Virginia ®

08/17/2003, 15:14:25
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I believe that the drug being referred to is "tetrabenazine". Dr. Jankovic spoke about it at the Houston conference. See link and quote from it below.

"Although it is possible that TBZ will be eventually available for clinical use in the U.S.A., the drug is currently considered investigational in this country. I obtain it under my own IND number. Cambridge Laboratories of U.K., the sole worldwide distributor of TBZ, however, is able to supply the drug directly to the patient or his/her physician on a named patient basis under section 9-71-30C of the FDA regulations for pharmaceuticals imported for personal use. The drug is currently marketed in the U.K by Cambridge under the brand name Xenazine(tm) 25. (The old brand name was Nitoman)"

Here is another link with information on it.
http://www.orphan.com.au/CMI_Tetrabenazine.pdf





Related link: http://www.bcm.tmc.edu/neurol/struct/park/park_tbz.html

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Re: Neurontin to Judy
Re: Re: Neurontin to Judy -- Moderator-JB Top of Thread Archive
Posted by: Claireroe ®

08/19/2003, 07:23:47
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http://www.bcm.tmc.edu/neurol/struct/park/park_tbz.html
Another useful link.

tegretol is another name for carbamazepine by the way

Hope this helps.
Claire







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