Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 03-08-2011, 04:00 PM #1
marthajoy7 marthajoy7 is offline
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Join Date: Mar 2011
Location: Seattle area
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marthajoy7 marthajoy7 is offline
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Join Date: Mar 2011
Location: Seattle area
Posts: 3
10 yr Member
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Quote:
Originally Posted by Jon1260 View Post
I have all symptoms you do and dx'd in 2005 with Essential Tremor. I take Primidone (50mg) 4x per day and Propranolol 40mg 1x a day. Careful with the Propranolol because it lowers blood pressure and makes you tired/weak. Primidone has worked well for me (gave me my life back!) but doesn't totally get rid the tremors. There are also other medications one can take for tremor - but not all work for everyone...
I also take 200mg/day Primidone but for BP I take Lisinopril/Hctz and Attenolol.
Somedays I need to take an extra Primidone for those bad days. I can now walk for up to about 5-10 minutes. More important is that I am working on getting my balance back. I got so weak, that I could not even raise my leg. Had to have a power chair to even get around our home. I also feel like I am getting my life back. Doctor tells me that I can go as high as 500mg/day before being considered for DBS (Deep Brain Stimulator). I know someone at our church who has had one installed for his hand tremors and it has helped him tremendously. A side affect for me seems to be that my brain is beginning to function again as well. I got so bad I could not even remember whether I had taken meds or not. Almost burned down home before getting good smoke detectors. Now at least I seem to be functioning as well as most people my age. But I know primidone becomes less effective w/time...either tremors get worse or body get better at removing it from the body or both. It is good to talk to others to know one is not alone in what they are facing.
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