SHIRLEY KEPPRA


Posted by RITA SILVER , Feb 04,2002,08:48   Archive
HI SHIRLEY,ABOUT KEPPRA I THINK I AM BETTER (N0T GREAT) EVEN WHERE BOTOX
WAS NOT MUCH HELP FOR MY APPRAXIA. THE LAST BOTOX I GOT IN DEC SEEMS TO HELP MY APPRAXIA. I THINK IT MAY BE WHEN MY MEIGE IS BEING CONTROLLED ,MY EYES SEEM TO GET SOME RESIDUAL BENEFIT. I DO KNOW THAT KEPPRA IS BEING USED FOR PARKINSON AND A LOT OF OUR PROBLEMS ARE NEAR THE SAME AREA OF THE BRAIN. KEEP IN TOUCH, RITA SILVER



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Re: SHIRLEY KEPPRA

Re : SHIRLEY KEPPRA --- RITA SILVER
Posted by Shirley-Arkansas-USA , Feb 04,2002,11:30 Top of Thread Archive
Hi Rita. The drugs with anticholinergic properties seem to be the ones that help the most with my apraxia. Right now I am using Benadryl 50mg three times a day. I also feel that it helps with my light sensitivity. Adderall-a stimulant drug-also helped with the apraxia but it also caused an increase in my blood pressure and heart rate so I had to stop it. I'm hoping to try a drug called Provigal to see if it works to some degree like the stimulants do but without the cardiac side-effects. I'm waiting on the doctor's office to call me back on that one.
I tried Parsitan but gave up after a couple of months due to the side-effects. It did seem to be helping a little with my eyes but not enough to make up for the side-effects of confusion and depression. I was very hopeful that it would work for me as it has really benefited some others. Different medications work for different people. We just have to keep trying until we find something that works.
I take .25 mg of Klonopin a couple of times a day and that helps to relax the squeezing of the eye muscles along with the botox.

I'll keep Keppra in my list of things to try at some point. Thanks for the information.
One of the things that really gets me down is when I feel like I have nothing left to try in my arsenol of drugs, alternative treatments or surgery.

Shirley the human guinea pig



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Re: SHIRLEY KEPPRA

Re : Re: SHIRLEY KEPPRA --- Shirley-Arkansas-USA
Posted by rita silver , Feb 05,2002,08:59 Top of Thread Archive
HI SHIRLEY, YOU HAVE BEEN ON MORE DRUGS THAN ANYONE I KNOW. I MAY BE ABLE TO HAVE LESS PROBLEMS BECAUSE I HAD A LOWER AND UPPER MYECTOMY.
MY APPRAXIA IS NOT BOTHERSOME AS LONG AS I AM BUSY WITH SOMETHING THAT
REQUIRES MY BRAIN TO THINK. TAKING A SHOWER (EVEN AVOIDING WATER IN MY
EYES) LEAVES ME ALMOST BLIND. BUT AS SOON AS I NEED TO PUT ON MAKEUP
MY BRAIN KNOWS THIS IS SERIOUS BUSINESS AND MY EYES ARE WIDE OPEN. EXCEPT FOR THOSE OF US WHO KNOW OUR PROBLEMS WE SOUND LIKE A NUT. I AM ON A SMALL DOSE OF KLONIPIN, ONE 0.5 AT BED TIME. BENEDRIL CAUSES ME TO HAVE MORE PROBLEMS WITH DRY EYES. NICE BEING IN TOUCH WITH YOU.
RITA(:-)

--modified by rita silver at Tue, Feb 05, 2002, 09:01:04




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Re: SHIRLEY KEPPRA

Re : Re: SHIRLEY KEPPRA --- rita silver
Posted by Shirley-Arkansas-USA , Feb 05,2002,10:51 Top of Thread Archive
Rita, I have tried a lot of drugs in the 2 1/2 to 3 years that I have been dealing with this. It's called being desperate and having a movement disorder specialist that is willing to let me try things within reason. I generally research things fairly well before I even ask my doctor to let me try something new. I may feel a little more confident about trying different medications and asking to try specific things since I have been in the medical profession. I generally do the asking to try something rather than the doctors recommending something.

Apparently my brain doesn't feel that putting on make-up is serious :-) enough as that is a very difficult task for me and if it gets done, it gets put on in stages over a period of time. Every day is different, though.
The Benadryl may dry out my eyes a little but this has never been a major problem for me (my eyes tend to tear a lot-especially since my upper myectomy). I almost welcome the burning sensation from my eyes being a little dry as I know that for me that means that my eyes are staying open more. I just use more drops and it takes care of it. This doesn't work well for someone with a dry eye problem.

I sometimes think that I might do the lower myectomy. But I'm not in a hurry to have that done. I'm hoping that we can get the botox dosage and sites fine tuned. I have a new neuro-ophthalmologist that just gave me a set of injections about 4 weeks ago for the first time. He did a reasonably good job. I still have a lot of squeezing in one particular area, so took my own advice and went back to see him at three weeks post-botox to let him see where he needed to fine tune. He seemed a little confused about my return visit and wondered why I was there. I believe that he thought that I was there to complain or to get more botox as he promptly told me that it was too soon for more without really messing up the schedule of things. I let him know that I just wanted him to be able to see me when the botox was at it's best so that he would know how to proceed with the next injections. He seemed relieved and did a lot of looking and taking notes. As I left, he was telling me that if I had any further questions to give him a call and he would be happy to talk to me. I left feeling like we were off to a good start. He is not comfortable prescribing medications for BEB as he says that they don't have a good track record so I was a little dissappointed in that but I have a good MDS that will prescribe medications. It is not always "one stop shopping".

Shirley in Arkansas who feels that it is almost time to start a topic on medications that we have tried to give some of the new people some food for thought.

--modified by Shirley-Arkansas-USA at Tue, Feb 05, 2002, 11:22:03




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