[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.

[RLSmi]

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.

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.

[Bob Dawson]

Originally Posted by RLSmi

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.

(1) I avoid the cough syrup/Nytall because I take seligilene, and somebody here said seligilene does not go well with Dextro
(2) Does anybody believe in taking one last sinemet pill at bedtime, or
(3) wake up halfway through the night to take a sinemet pill (carbo- levo) then go back to sleep
(4) why so little sinemet needed at night? Just inactivity?

[reverett123]

A lot starts to happen here around 2 AM or so and keeps on until about 5 AM. Cortisol in particular s in play as daylight approaches.

Originally Posted by Bob Dawson

(1) I avoid the cough syrup/Nytall because I take seligilene, and somebody here said seligilene does not go well with Dextro
(2) Does anybody believe in taking one last sinemet pill at bedtime, or
(3) wake up halfway through the night to take a sinemet pill (carbo- levo) then go back to sleep
(4) why so little sinemet needed at night? Just inactivity?

[VICTORIALOU]

Hi Jolot and welcome

If you look through the old posts on this site I think you will find all kinds of useful info.
I also have a tremor dominant version , diagnosed in 1997, and on selegeline only for the first 12 years and since the last four years taking sinemet. Currently at 150 X 4 daily.
Like you, mornings are always my best times. It has been a puzzle for me to figure out why. Since being on sinemet, I have been experiencing very troubling muscle weakness. Because of that, I have considered that I wake up feeling so much better just from the rest my muscles have gotten over night.
My last sinemet dose is usually around 6 pm, so I am looking at at least a 12 hour span, up to 15 hours without taking medication.
Even if I am tremoring some in the mornings I have more energy and feel more "normal". I can go for a bike ride or swim and try to do my errands, etc at that time. Another thought that I have is that in general for me the dyskinesias are worse than being off- after all those hours without meds I have almost no dyskinesia in the mornings (and what a huge relief that is).
Just from common sense, and what you describe... I would do just as you are doing. I don't see how it can "hurt" you to wait to take your first dose of sinemet until later since you feel better without it. I will occasionally "drop" a dose at the end of the day if I don't need it. I will be curious to see if there are opposing opinions about that.
Please post if you find out anything about the questions you ask.

[Aunt Bean]

My brother was better by the middle of the night ...could walk without falling, I suggested that his wife cut back on dosing during the day, ( it sounded like he was better when drugs wore off)...this proved to be true. So many of the drugs are actually toxic to our bodies.
I find that a dose of tincture is necessary before bed , I am still overwhelmed by pain and stiffness upon wakening and it takes me anywhere from 10 minutes to 1 hour to stretch , massage neck and shoulders and exercise before starting my day. Keeping l-dopa steady is important.... I still do not have a dose schedule...but go by these symptoms : if my neck and shoulders are starting to pain/ if I cannot tap quickly with my left hand/ if my gait is not steady with both feet/ or my left arm is showing up in front of me instead of at my side where it belongs/ or my eyes are staring and dry....all definite markers of me needing l-dopa.