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nosoupforyou

New to Sinemet

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Hey all. I just started C-L 25/100, 1/2 of a tab twice per day. Long story short, I'm 33,  had a negative DatScan after my MDS saw parkinsonian symptoms, called it Dopa-Responsive Dystonia and put me on C-L. Even though I have some symptoms that have nothing to do with DRD, I have started taking the pills regardless. As long as I get relief, I don't care if he calls it Funky Britches Disease. Before the DatScan, other neurologists put me on Mirapex, which almost gave me a heart attack, and Requip, which made me gain about 7 lbs of fluid weight and develop OCD-like behavior.

So after my second night of dosing (have started on just one half per night to adjust, given that I am really sensitive to medication), I just wanted to see if others had similar experiences. After that half of a pill, my balance is way better, stiffness way better, posture way better, no "puffing up" of shoulders and chest like I had just worked out, gait is much better, muscle spasms better, tremor is non-existent, and dexterity is much better (able to sort through papers, hold things without dropping them, etc). Just pooling a little drool and the right arm is still not swinging as much.  It takes about an hour to kick in and wears off after about 4 to 5 hours.

On the flip side of that, the first night, I really didn't feel many side effects. I was a little wired, like after having too much caffeine, but nothing too noticeable. Last night, and granted I have never done drugs in my life, but it was probably as close to "high" as I have ever felt and it made me uneasy. Everything really felt in sharp focus, but I also felt really antsy and really scatterbrained, like a thousand thoughts were running through my head like a highway. I was pretty decently shaky as well, with a sort of jumpy feeling in my chest. I had trouble getting to sleep last night and had a couple of "fainty" feelings. Did anyone else do this when they first started taking it? I'm also on Metaprolol 25 mg twice a day to control blood pressure, but I took it after the C-L should have worn off. 

I really don't want to get off this pill if I don't have to, as it has given me a glimpse of the old Adam for the first time in 2 years of slow, steady symptoms; I just don't want to be "Adam on Coke" either. Thanks for any insight!

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Adam, I suggest you report your symptoms to your doctor. The racing thoughts might be hypomania. There is a c/l pill with only 10 mg of levodopa. Ask your doctor if you need to start even lower to see if you can build up a tolerance to it. PD would be a miserable experience without any medication.

Dianne   

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Nosoupforyou, I feel exactly the same way with sinemet,the mental non motor symptoms of PD are not managed by sinemet,thus the uneasy feeling and a thousand thoughts going through your mind.I agree with Beau's mom,you can contact your MD for advice.He might adjust your dosing,timing or refer you to a mental health practitioner.Good luck.

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I have the same reaction to sinemet at night. I was unable to sleep for a year until i realized that it wasnt parkinsons that kept me from sleeping but sinemet. Now i try to avoid taking sinemet after 3 pm and i sleep much better

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I've figured out that this was from cutting the CR pill in half. I took a whole and this didn't happen, but taking a half actually released the medicine mostly at once. So it was too much at once and the ole noggin couldn't handle it.

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