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11-27-2011, 06:22 PM | #1 | ||
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In Remembrance
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as many of you know i take sinemet 25/100s as the only dopaminergic drug . i take two every two hours and two amantadine by noon for dyskinesia. then nortriptyline [nerve pain killer, antidepressant, with anti-cholinergic qualities]
and 3 xanax - all throughout the evening with less sinemet. my neuro has just added klonopin. this is a wonderfully calming addition and my lips do not disappear from sinemet grinding. myspeech has improved. klonopin isa muscle relaxant. i feel better . my point is i have no dyskinesia at all from 1600 to 1800 mg of sinemet every day, i am calm and the klonopin has elimintated much of the mouth and facial dyskinesia. i take no agonists, me to drugs or drug combinations, no MAO inhibiors, no CR no other dosage. i feel good. now if my leg would just mend. DOES ANYONE ELSE TRY THIS PROTOCoL? SINEMET IS NOT THE PROBLEM,,,,IT;S EVERYTHING WE ADD TO IT. AT LEAST FOR ME. WE NEED MORE TO PUT ON THE BRAKES, NOT OVERFIRE THEM Imho.
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paula "Time is not neutral for those who have pd or for those who will get it." |
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11-27-2011, 06:38 PM | #2 | |||
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In Remembrance
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I am getting by with only sinemet and sinemet cr generics. I quit requip three months or more ago once I realized that it was the cause of my dyskinesia and have avoided the others.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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11-27-2011, 08:40 PM | #3 | ||
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I noted your absence for a week or so and I am happy that you are back. I agree entirely with you that taking many types of drugs beside sinemet will complicate the treatment. It is bad enough with sinemet alone. cheers Imad
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Imad Born in 1943. Diagnosed with PD in 2006. |
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"Thanks for this!" says: | paula_w (11-28-2011) |
11-27-2011, 11:51 PM | #4 | |||
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Senior Member
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Sinemet and Sinemet CR does not work for me whatsoever..All I get from Sinemet is dyskinesia, dystonia, and failed doses
The only thing that works for me is Stalevo 200 mgs x 3 daily..I get 10 - 11 hours of on time, sometimes 12 hours, and 99% of the time, Stalevo is predictable I cant take four doses, cuz all I get from a fourth dose is 2-3 hours of dyskinesia, and misery Mucuna..( Zandopa ) works well too I get dyskinetic in the morning when meds are kicking in, and in the evening when they are wearing off I have found that taking an anti-acid reflux drugs in the am with morning meds, competes with L-dopa absorbtion,and causes extended periods of dyskenisa, and takes longer for pd meds to kick in..I also take pd meds on an empty stomach in the am..Food of any kind interferes I have recently added 200 mgs of Wellbutrin for depression, and 300 mgs of Neurontin for anxiety, and neurological, for lack of a better anology, irritation on off periods..When I went off, I got dyskinetic, sweat pouring off of me, and then my whole body would get weak, and I got so uncomfortable, that I wanted to jump out of my skin..I could feel my diaphram pushing out every single breath..The Neurontin got rid of all those nasty symptoms Neurontin also has minimized the dyskinesia, and morning meds kick in a bit sooner, and wear off alot smoother Wellbutrin and Neurontin gave me my life back, and to think two years ago, I was seriously thinking about DBS..Speaking for myself, I think that would have been a big disappointing mistake
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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11-29-2011, 07:23 AM | #5 | ||
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Hi Paula,
Sinemet and entacapone do it for me, mostly. An additional medication, solifenacin succinate, gives me more mobility, that is I am more flexible with it, it is an anti-cholinergic. The minimal dyskinesia that I have been developing over the last year is greatly increased with this drug, including facial and mouth movements. But it does the deed for the problem it is prescribed for, neurogenic bladder. Sinemet on it's own does not get to my brain properly and I get a return of PD masking, slowness etc., but no dyskinesia, some dystonia. Glad to see you back here, hope they sort your leg out, one way or another. You have been missed... |
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11-30-2011, 07:43 PM | #6 | |||
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Senior Member
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You should start a poll...you may be on to something here. I have a young onset friend (very young only 32) who had dyskinesia when on azilect and mirapex. None on Sinemet alone. Has it now again on Requip and Sinemet. Incidentally, I recently read that PWP before the introduction of carbidopa had ti endure megadoses of levodopa...some up to 9000 mg per day! Can you imagine? Side effects were dyskinesia and increased libido...gee I guess so! Laura |
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