Keppra


Posted by Rita Silver , Jan 26,2002,11:30   Archive
Hi fellow blephars,
I have not touched base for a long time. Beside s my plain old blepharospasm and and having a upper and lower myectomys a few years ago, I had a frontalis sling done this past summer that had to be reversed after 6 weeks. My meige as well as my dystonia have also gotten worse. I am an area rep in the SE corner of Florida (Delray Beach).
I attended the conference in Scottsdale and after speaking to a few of the Doctors I was now advised to put myself under the care of a
neurologist that specialized in only movement disorders. I am very
glad I took their advise. I have been much better and I have been given
one of the newer drugs called Keppra. My hand writing has greatly
improved and my arms and legs which from dystonia sometimes failed to let me move and prevented me from walking etc, is no longer causing me to be immobile from (minutes to as long as many hours) I do not know
much about Keppra but it does have some of the same contraindications
that Klonipin has. I have been on 2 (0.5 klopipin ) for almost 6/12 yrs.
I am now taking only one. I hope some of you who are having similar
symptoms might confer with your doctors and look into some of the newer
drugs.Rita (:-)



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Re: Keppra

Re : Keppra --- Rita Silver
Posted by kathy , Jan 27,2002,03:38 Top of Thread Archive
it's good to know about this and that you are doing well on it. how much of a pain in the you know what, was it to have your frontalis sling reversed?



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Re:Frontalis sling

Re : Re: Keppra --- kathy
Posted by RITA SILVER (Rita Silver,RITA SILVER), Jan 29,2002,09:48 Top of Thread Archive
Hi Kathy, I found the surgery not painful at all & I had one of our great Doctors do it as he also had done the two myectomies. The main problem is adjusting the "GORTEX STING) that your eyes can be shut when they need to be. Not blinking and not being able to close them enough
causes severe dry eyes (which when not heavily protected with a heavy
ointment) to protect the corneas from drying out) is a problem. My husband had to administer the ointment several times a night as I could not close my eyes 24 hrs a day. I spent a full 5 weeks like this and
had very little vision during the day as the heavy ointment to protect
my corneas prevented me from functioning normally. The surgery is
reversable as all that is done is to cut the string. I was fine after
this was done and content to live with my good & bad days from my
appraxia of both my eyes. If you are considering doing this I would try to contact as many of us who have had this surgery.
Your fellow blepher,
Rita Silver






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Re: Keppra

Re : Keppra --- Rita Silver
Posted by Joann Humphrey , Jan 27,2002,12:33 Top of Thread Archive
So happy to hear there's help for you & you're better. I've never heard of Keppra. Also good to know there are dystonia specialists around.
Joann in Ark. where sun is shining & it's a beautiful day. Winter weather is coming in midweek however.



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Re: Keppra

Re : Re: Keppra --- Joann Humphrey
Posted by rita Silver (Rita Silver,rita Silver), Jan 29,2002,08:57 Top of Thread Archive
HI JOANN, The sun never quits here in Florida. A couple of others in my support group are now taking Keppra and are doing better . I take only1/2 0f a 250 mg pill a day. The neurologist I use studied I believe
Under Dr. Brin who was in New York. Dr Brin I think now works for Allergan.

--modified by rita Silver at Tue, Jan 29, 2002, 08:58:20




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Re: Keppra

Re : Keppra --- Rita Silver
Posted by Shirley-Arkansas-USA , Jan 28,2002,11:47 Top of Thread Archive
Hi Rita, good to "see" you again. I posted a link below for people that would like to see some information on the prescription drug Keppra. I had not heard of it before, either. I'm glad that it is working for you. Do you feel that it has helped your BEB? Apparently you have apraxia also, since you said that you had a Frontalis Sling done. The apraxia is my biggest problem. Do you feel that the Keppra has helped with the Apraxia problem or primarily for your other areas of Dystonia?
Thanks for letting us know how you are doing.

Shirley in Arkansas who met you at the Scottsdale conference.

http://www.rxlist.com/cgi/generic3/keppra.htm




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Re: Keppra

Re : Re: Keppra --- Shirley-Arkansas-USA
Posted by rita Silver (Rita Silver,rita Silver), Jan 29,2002,08:45 Top of Thread Archive
Hi Shirley,
I do not think the Keppra is helping my appraxia. But it has helped my other movement problem. I have others in my support group who go to the same neurologist and are now taking Keppra( which is very new) They are doing a lot better also. IT is not available and not even known in
canada, as I mostly get my drugs there. I use Walgreens pharmacy & I have to order it as it in not stocked.



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Re: Keppra

Re : Keppra --- Rita Silver
Posted by Virginia , Jan 29,2002,17:47 Top of Thread Archive
Rita,
Some of us have respiratory involvement in our dystonia. Do you or any of those in your support group who take it have any idea whether Keppra would help that?
Virginia in AL



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Re:VIRGINIA- Keppra RESPIRTORY PROBLEMS

Re : Re: Keppra --- Virginia
Posted by RITA SILVER , Jan 31,2002,10:01 Top of Thread Archive
HI VIRGINIA, I HAVE TALKING PROBLEMS WHEN I GET A SPASMODIC PROBLEM WHEN I NEED BOTOX FOR MY MEIGE WHICH COMES ON SUDDENLY AFFECTING MY FACIAL NECK, SHOULDERS AN I AM UNABLE TO TALK. I HAVE DO HAVE MEMBERS
IN MY SUPPORT GROUP WHO HAVE VERY SIMILAR PROBLEMS. ONE HAS A LOT OF OTHER MEDICAL PROBLEMS AS THIS PERSON ALSO IS A MANIC DEPRESSIVE SO I KNOW HE GETS BOTOX IN HIS THROAT AREA. THE OTHER MEMBER IS TREATED AT BASCOM PALMER IN MIAMI.I DO NOT KNOW WHAT HER MEDICATIONS ARE. I DID FIND
OUT YESTERDAY THAT KEPPRA IS VERY OFTEN USED FOR PARKINSON, WHICH I DO NOT HAVE. I KNOW SINCE I HAVE BEEN ON KEPPRA FOR A SHORT TIME AND A
VERY LOW DOSAGE THAT MY ARMS AND LEGS AND MY TREMORS HAVE VERY MUCH IMPROVED. I THINK MY BLEPHARSPASM, MEIGE AND SPASMODIC DYSPHONIA , WHICH
HAVE GOTTEN WORSE AS TIMES GOES BY ARE NOT BEING HELPED BY DRUGS, ONLY
BOTOX. IN DECEMBER I WAS GIVEN 15 INJECTION WHICH WAS 105 UNITS OF BOTOX
WHICH WORKED WITHIN AN HOUR TO STOP THE SEIZURES WHICH WERE COMING
EVERY 10 MINUTES. I DO NOT KNOW IF THIS INFORMATION WILL HELP.
RITA SILVER




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