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Do you take your carbidopa/levodopa, daytime only, or around the clock?
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Newly diagnosed and am taking it three times per day. Not sure what good it does except make me fatigued and nauseous. Dr said it does not slow down disease progression, only vigorous exercise does this.
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I take two pills five times a day 25 – 100 pills. I take six during the day and 4 a night to sleep. The 25 – 100 pills make it able for me to sleep at night. And I still have off times with all these pills. I hate pills hate pills. Up to the age of 58 I was never taking pills. Now I take 10 a day and it’ll be more later on I’ve only been on the pills for 6 years I pray for each and every one of these people on has parkins as they can get better and get away from this bills.
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I currently take Madopar 100/25 x2, four times a day, however, it takes at least 1 hour and even up to 2 hours, for it to become effective. Sadly, it’s not very long lasting and has started wearing off maybe 3.5 hours after taking.
I have no problems walking until my medication is wearing off and then my left hand will show the first signs of shaking, followed by my left foot which then decides not to co-operate and then has a mind of its own, so I have to stop walking for a little while, however, once I have rested/sat down for only a few minutes, I’m good to go again for a while. The longer time passes, the shorter my time walking without my left foot issues. If my left foot decides it doesn’t want to continue, I try sit down/rest for a couple or so minutes, then I’m good to go once again, it’s kind of like I press a reset button.
I have changed my initial dose timing to around 10am, unless I’m going out early, I try to take my next dose at around 2pm, then my third dose between 6.30 to 7pm, with my final dose of the day before I go to bed, usually around midnight.
I generally have segments of time when my meds aren’t working, so I try to ensure they are when they have least impact on what I’m doing, so maybe when I’m watching a relaxing show on TV etc.
I don’t sleep too well, wake up in the night almost every night, but I usually drift back off to sleep, then I get up usually 7am. I generally wash the dishes on getting up, doing that appears to stop my tremor whilst I’m undertaking that task, I then go through my emails etc. on my computer which also seems to relax me, until I take my morning dose at around 10am, I’m usually in the house until well after taking my first dose and if I contemplate going out earlier, I would try to take my first dose earlier, as I know my tremor would be there until the madopar kicked in, maybe 1.5 hours after taking my 2 x 100/25 capsules. The issues with my left foot and walking seem to worsen if I walk at a faster pace, I can walk much further if I walk more slowly, still at a reasonable pace, but my partner likes to walk at a faster pace, which isn’t a problem for me, until the madopar is wearing off.
When I’m really stressed, my left hand will shake no matter how long since I took my meds, best example is when the sports team I support, are playing, but there are many other times when stress takes over.
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I was diagnosed with PD in 2016..I’m now taking Sinemet and Entacapone 5 times daily at 0700,1030,1400,1730, and at 2100 (7a.m.,1030a.m., 2p.m., 5p.m., and 9p.m.) Usually I wake at about 4a.m.to urinate, but on occasion it’s as early as 2a.m. but only one time each nights sleep. I was not aware of the possibility of the medications being the possible cause of waking to urinate. So now I will be checking to see if the time of the last dose effects when I wake up to urinate, because of my memory issues I forget to take a dose on time and have adjusted the dosing times to compensate. On occasion I have completely forgotten about taking the 9p.m. dose. This has been my routine since 2021.
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dx 2022. take very littel c/l 2a day.
exercise, and natural supps. work for me:
NAC , MSM, Mucuna, B3, ltyrosine @ 2x day.
nothing after 10pm.
sleep with heating pad @ neck area.
urination @ 3-5am.
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Daytime only
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Here is an update from my urologist. About 35 to 40 percent of the people with PD he sees, get up 3 to 5 times a night to urinate or cannot urinate at all. He doesn’t know what is worse.
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When my neurologist set me up on C/L two years ago, her instructions were 3 times, five hours apart, none at night. She said taking at night was a waste since it only treats symptoms. She suggested melatonin if my sleep was active with talking or arm swinging.
I take it at 8am, 1pm, 6pm without food in my stomach.
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Howdy All: I take my C/L at 10am, 4pm and again at 10pm. I used to take it 9 – 3 – 9 but pushed it back one hour. I also take a slow release dose (200/50) at 7am IF I CAN WAKE or IF I URINATE during the night.
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I can tell you how my grandmother does it, because I often spend time with her, and she takes it only during the day, according to the doctor’s advice. But in general, lately she wants to try some new medicines for herself and we support her in this decision and help her find everything in Canadian pharmacy https://www.canadadrugsdirect.com/. We have been using this option for a very long time to find the necessary medicines and are always satisfied.
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As you know, each PD patient is different, and meds may vary a lot. My wife uses the Duopa delivery system for Carbidopa/ Levodopa.during the day, but takes one oral CDLD 50/200 extended release pill at night. We know many PD people that do this. I believe the brain needs during sleeping are much less. Also, “chasing” symptoms with the Rx between, ie, midnight and 8 am would probably give a varied and unsuccessful outcome. The meds need to be consistently available to the brain…thus the 50/20 CDLD extended release taken just before sleep, and no other Dopamine meds taken after bedtime starts. Try Melatonin too, and ask the Neurologist about Tizanidine…a muscle relaxer which really helps with my wife’s sleep.
Peter Wood, Caregiver
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