Quote:
Originally Posted by Jaye
Steve,
I have always wondered this and now I must ask--or maybe I have asked and forgot what you said:
Why do you go off for the night?
By my reading of the literature, nothing does a better job of producing dyskinesias and dystonias than what they call "pulsatile delivery" of Sinemet (or equivalent). "Stay on" is the watchword given me by several neuros (some of them even good doctors!).
I have stayed on as evenly as i can these twelve years, and personally I think it has helped me to mostly avoid motor complications severe enough to bother me. I now take Sinemet every three hours, around the clock if I wake up, and if I start having gaps in coverage I'm on the phone to the neuro. But that's me.
I tried klonopin after a sleep study showed I act out my dreams and don't get much REM sleep. i had a paradoxical reaction to it and was wide awake all night.
Best of everything to you,
Jaye
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Jaye..I was taking Sinemet CR for about 18 months because it worked good for me..Then I started having trouble with failed doses..Sometimes I would take my 3 doses of..(50/200)..CR and nothing would happen all day..I was walking around like a zombie
So I called my neuro, and told him that I needed to see him ASAP, that I couldnt wait for the next available scheduled appointment
He examined me, and suggested I try Stalevo 200 mg, x 3 daily, so he gave me some samples..It worked great..Then when my supply of samples ran out, I got an Rx for it, and my Part D rejected the Rx and said that I had to try Comtan and Sinemet seperately..So I tried it, and it was a nightmare..Not only was it unpredictable, I had never had dyskenisia untill I tried this combination..So I called my neuro and told him it wasnt working..He contacted the insurance company, and got them to approve the Stalevo..All went well for a while, and then I began to start having nasty off periods..So I went back to the neuro, and he gave me the green light to go from 3 doses, to 4 doses per day..I tried it for a while, and the fourth dose either worked, didnt work, or gave me 4 hours of dyskenesia..At this point, I was so afraid, that if I continued this regimen, my whole day might turn into a dyskenetic horror show..I cant handle dyskenisia, it drives me insane
I have tried supplimenting my daily regimen with regular Sinemet, but all I get out of it is severe muscle cramps, and dyskenisia..The other problem with the Stalevo, is the cost..With the other meds I take, I'll hit the doughnut hole in about 6 months
The only other thing that works is Zandopa, and when Im having an off day, I take a teaspoon of it, and mix it with water, and I am near symptom free..I dont use it on a regular basis, because when I stop taking it, it interferes with the performance of the Stalevo for a few days
So Im inbetween a rock and a hard place, which is why I have been put in a situation where I have to try other meds to take the edge off of the off periods
I am not too comfortable about taking addictive drugs, because of my addictive personality, but it's either that, or DBS, and I am not ready to go that route yet..Like I mentioned in a previous post..Ive seen miracles with DBS, and Ive seen trainwrecks with it as well..Ever since the day I saw Laura..(Harley)..get shocked/electrocuted when she was being being programed, at the hospital in Seattle, I have had serious reservations about having DBS, unless I get so bad that there is no other alternative