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| Primidone for BEB or other dystonias |  | ||
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Posted by: lillygirl72 ® 10/05/2011, 17:51:36 |
Hey Y'all, has anyone been on Primidone for BEB or other dystonias & what has been your experience? My new Ontolaryngologist suggested I try it. I want the real 411 side effects etc... Also, I've been on clonazepam for 2 years for cervical dystonia so if anyone has experience with both, that'd be great. Thanks so much. |
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Posted by: In Indiana ® 10/07/2011, 07:56:53 |
Hi, LillyGirl-
I don't have any personal experience with Primidone. However, I find it interesting that it targets sodium ion channels. Possibly, your new doctor is taking the approach that you have an SCN4A variation/mutation (muscle channelopathy) that is causing your symptoms? Did he or she mention anything like that? Were you diagnosed with BEB, or with blepharospasm secondary to ______? When you talk about muscle channelopathies, you are talking about myotonia. It seems like there is a thick, grey line as far as the difference between myotonia and dystonia - it gets very confusing. As hard as I've tried to sort it out, I can't. It seems that some people with dystonia have myotonia-like symptoms, and many people with myotonia have dystonia-like symptoms. Like all medications, there are side effects with Primidone. A few years ago, I had the privilege of listening to a world expert in muscle channelopathies (Dr. Lehmon-Horne) speak. He has had great success with medications for his patients, but cautioned that it is important to use the lowest dose possible to avoid short and long-term side effects, and that sometimes it takes more than one medication in combination to get the optimal effects. Please, please keep us posted and let us know if you try this, and if it is helpful. You might be able to help others as well. Best wishes! |
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Posted by: tatia ® 10/07/2011, 12:11:08 |
I've never heard of it, but second Indy's motion: if you try it, let us know how it works for you! Tatia |
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Posted by: Shirley Barr in New Mexico ® 10/07/2011, 15:15:25 |
Primidone (Mysoline) is an anticonvulsant medication typically used for seizures. This would be an off-label use for the drug. Having said that, some anticonvulsant medications do seem to help "some" people with dystonia or blepharospasm and are occasionally recommended by their physicians. You could try it and see how it does under the supervision of your doctor. At times a medication will work for awhile and then seem to stop working. I don't believe that it is one of the commonly suggested anticonvulsants for blepharospasm but I could be out of the loop on that, too. I've provided a link below to drug information on Primidone from rxlist.com.....just follow the links on the site to side-effects, etc. I did find where we had discussed it once before....
Try putting "Primidone" into the archive search function and you may come up with more posts. Shirley in New Mexico
Related link: http://www.rxlist.com/mysoline-drug-center.htm Modified by Shirley Barr in New Mexico at Fri, Oct 07, 2011, 15:19:18 |
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