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Old 12-28-2009, 03:52 PM
lurkingforacure lurkingforacure is offline
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Join Date: Feb 2008
Posts: 1,485
15 yr Member
lurkingforacure lurkingforacure is offline
Senior Member
 
Join Date: Feb 2008
Posts: 1,485
15 yr Member
Default log it and try different things

I am so sorry you are having such a hard time. We don't really do that great with sinemet either, although I think a big part of that was all the hoopla leading up to its use, we kept hearing about the sinemet honeymoon and how great it'd be for 3-5 years, and, well, nope, not for us. We have tried several variations on a theme with the goal being to keep the sinemet to a minimum.

We tried taking the 3-4 pills a day of sinement every hour, splitting them up, so it'd be like this:

6am 1/4 pill (combined with .25 mirapex)
7am 1/4 pill (same) ....all day long

Problem with that? Can't eat a damn thing, then you are up at 1am ravenous, and devour the pantry. Other problem? Took way too long to build up the sinemet in the system for the day.

Now we are doing this instead:

7am whole pill (.25 mirapex)
8am 1/2 pill...

This is better because it begins to build up the sinemet in the system faster, and allows some "play" during the day depending on how things are going.I can't say we feel "good", but the early morning is not as slow as it was under the first dosing regime.

NOTE: we are not reducing meds, which can be dangerous without your doc's help. We are simply playing with the dosing times, this is with our doc's approval (he's all for doing whatever works, BTW). There are several folks who have reported much better results with the same amount of meds by simply changing the dose time and/or amount...but the total daily amount stays the same.

I feel badly for you and really hope things improve for you. It sucks to have to take meds to begin with, but it's particularly crappy when they don't provide much, if any, relief.

You may also want to check out the mucuna threads here, lots of folk report that is helpful for PD as well. Good luck.
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"Thanks for this!" says:
Ronhutton (12-28-2009)