I have never experienced significant tremor, but most troublesome symptom is slowness (bradykinesia) and postural/balance problems. My medication history is also very different from yours, having been prescribed Sinemet from day one, along with amantadine. Not only did my motor symptoms disappear within a day or two, but a two-decade long struggle with depression ended with the medication. (A variety of antidepressants and long term talk therapy were only partially effective.) Having started with Sinemet (generic) 25/100 3x daily, and dropping down from 200 to 100mg daily amantadine within the first few weeks (due to swelling ankles), I have been able to control motor symptoms with periodic escalation of daily carbi/levo to minimize "Off" times for the past 12 and a half years. My current daily carbi/levo dosage is one each of 25/100 immediate release and 50/200 controlled release 4x at 3 1/2 hr intervals, for a total of 1200mg of levo each day. I am extremely fortunate to have only minimal dyskinesia, even at those high levels.
Other members of this forum know that I also supplement the conventional meds with mini-doses of dextromethorphan from pediatric cough syrup; 4 mg each night at bedtime. I credit my relatively slow progression with this regimen, having faithfully practiced it for the last eight years.
Your description of the day/night cycle of your motor symptoms and response to Sinemet is so different from my own that we seem to be suffering form two distinct forms of PD. Whereas you seem to move from a more "Off" state at the end of a day of meds to a gradual "On" by morning without further Sinemet, my On/Off cycle leaves me slow, stiff and shffling in the morning after 8-10 hrs of no meds. To get "On" in the morning I leave my first dose on the nightstand before I go to bed and take it to start my day. The "slows, stiffs and shuffles" take 40-60 minutes to disappear. Also, my nightly "nature call" trips come with increased movement difficulty, rather than easing up as you described.
I would be interested to know what your overall meds history has been after initial diagnosis.
Quote:
Originally Posted by jolot
I am 76 year old diagnosed with tremor intensive Parkinson’s in 2001. Started on Sinemet Feb 2012. For the eight months I have had problems with Sinemet wearing off within two hours or not kicking in at all, 150 mg four times/d four hours apart. Started on Comtan two weeks ago, seems to almost make it to the next dose 70% of the time, but sometimes doesn’t kick in at all. I will need to give it more time, as it is am doing much better than before.
At around 2am I need to get out of bed but am very slow. I am not able to turn onto my side or back so I must get out of bed and get in again which I do three or four times. Each time is easier as I am moving better. By 7am I move and function just as well as on-time with meds at least until 1pm. So what I have been doing is starting my meds at 12 noon, 4pm, 8pm, and skipping the 8am dose.
My questions are….1. Why does my condition improve during the night?
2. Does it hurt to skip the 8am morning dose?
If I take the 8am dose and it does not kick-in then my morning is much worse than it would be by just skipping the dose. Any comments are appreciated.
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