curious about Kilonipin


Posted by margo heller-levy (Margo Heller-Levy,margo heller-levy), Apr 08,2002,19:05   Archive
Hi! I was diagnosed with BEB/Meige in February 2002. Have had 1 Botox series of injections- worked about 50%. Due for another end of April, perhaps a little bit more. I'm fairly OK during the day, start to deteriorate about late afternoon. I take .5 mg of Kilonipin in Am when I get up. I think it wears off by afternoon. I tried splitting the pills and taking half in Am and half in PM. Didn't really work. Just wondering what dosages work for you all out there? I was depressed before my diagnosis and I get tired sooner but I don't think I'm dpressed now- just frustrated at times. Any help would be appreciated. Thanks! Margo from Needham, Mass :)

PS My doctor mentioned Brughel's syndrome as opposed to Meige. What is the difference?




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Re: curious about Klonopin

Re : curious about Kilonipin --- margo heller-levy
Posted by June in Toronto (June Floyd,June in Toronto), Apr 08,2002,19:24 Top of Thread Archive
I can't answer about Klonipin as I don't take medication for my beb, Margo.

"Meige Syndrome is a neurological disorder of unknown cause. This condition is also known as Brueghel's Syndrome because the 16th Century Flemish Artist, Pieter Brueghel the Elder painted a patient who apparently had this condition. It was identified as a possible case of dystonia in 1910 and ha since been referred to as Meige Syndrome, so named for the French doctor Henri Meige, who identified it" excerpted from `Caring and Sharing' Benign Essential Blepharospasm Meige and Other Related Disorders' booklet distributed by BEBRF, Revised 1997.

Best wishes

June in Toronto(beb/meige)

--modified by June in Toronto at Mon, Apr 08, 2002, 19:35:14

--modified by June in Toronto at Mon, Apr 08, 2002, 22:11:16




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Re: Brughel's syndrome another name for Meige

Re : curious about Kilonipin --- margo heller-levy
Posted by Shirley-Arkansas-USA , Apr 08,2002,20:15 Top of Thread Archive
Hi Margo. Welcome to the bulletin board. June has already answered your question about Brughel's syndrome but I'll copy and paste a definition that I found.

Orofacial-buccal dystonia (Meige's or Brughel's syndrome)
a combination of blepharospasm and oromandibular dystonia

I do take Klonopin. I take .25mg (I have 1 mg tablets that I break into fourths) in the morning and then .25mg around lunch time and sometimes I take another .25 mg in the late afternoon. It just depends on my symptoms.
The peak duration of action is 2 hours for Klonopin. It stays in your system longer than that. I generally can tell that I need a dose or that it helps for about four to six hours. You might try taking your half dose in the morning then another half dose at noon and see if that works better. Check with your doctor and he or she might be willing to prescribe a little more and maybe 2 to 3 times a day versus just once a day. We're all a little different and need different dosages of medication. Discuss the problem with your doctor and maybe you can come up with a workable solution.

Good luck and believe me-we really do understand the frustration and the tiredness. Fighting spasms all day long and trying to see can tire one out very quickly.

Shirley in Arkansas

--modified by Shirley-Arkansas-USA at Mon, Apr 08, 2002, 20:48:49




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Klonopin

Re : curious about Kilonipin --- margo heller-levy
Posted by Virginia , Apr 08,2002,22:39 Top of Thread Archive
I'm taking .5 mg in the morning and .25 late afternoon. I seem to need that whole pill first thing in the morning. I can leave out the afternoon dose easier than I can cut back on the morning one (although I do sometimes cut back on the a.m. dose when the botox is working).

Virginia in AL




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