They have pointed out L-Dopa deteriorates sleep when taken in the night. I have read people experiences opposite to that. My personal experience is that levodopa improves nocturnal mobility (such as rolling over in the bed, getting out of the bed etc) but it causes sleeplessness.
I request others to share their personal experience
I have dystonia in my feet, hips, and shoulders. Very painful when “Off.”It wakes me up so i take CL as needed in the night. So I don’t get much sleep. I’ve tried not taking CL for up to three nights.very painful and less sleep. I am 72 and have had PD for 15 years. Started CL three years ago. I take one CL 25/100 every two hours and get aboitb15 minutes “On” time per pill .
What is going on with my husband? I was reading over the comments here and and you are saying you have had PD for 15 years. He was diagnosed in 2015, yesterday I put him on hospice. He is very thin and eats little, fear of choking is a factor same with drinking anything even though I thicken his water. He has severe dementia, which is a big problem with me getting his meds into him. Why did he progress so fast? Constipation is our worst problem. 5 days have passed since his last BM.
He does sleep well though , most of the time. regardless of how much C/L is in him. I give him a 25 mg seroquel at bedtime and some cannabis oil. Before that we had really bad nights.
I too have a vibrating ball for tremors and it seems to help a little bit. But after reading about other devices that are not yet available, I had the idea of trying a vibrating wrist metronome such as some musicians use. I got an inexpensive one on Amazon and set it for about 70 beats a minute. It seems to work quite a bit better for me and has the advantage that you wear it like a wristwatch and don’t have to hold on to it. In fact, it seems to work better when you focus on other things.
But I’m not a doctor and this is just a personal hack.
I take a controlled-release C/L pill and 50mg Opicapone at bedtime. No movement problems (which I did have prior to the controlled-release dose) but I am troubled by nocturia. Sometimes I pop a second CR pill if I wake up in the early hours.
Typically I get a total of 5 or 6 hours total sleep a night, which I don't feel is enough. Usually I have to take a nap in the afternoon.
Reading the studies you cited, I may try taking Mucuna instead of the C/L dose at bedtime, to see. If it helps the nocturia.
Good article. It emphasizes on carefully adjusting the levadopa dose to prevent its ill effects. Below is the excerpt from another article which elaborates it at length.
"higher doses of dopamine at bedtime have been found to exacerbate insomnia, hallucinations, and dysuria (Sringean et al., 2020); hence, many physicians prefer to avoid nocturnal dopamine therapy. Patients also prefer not to take dopamine at bedtime if their physician does not prescribe it specifically for nighttime symptoms"
And then it says:
"Treatment of nocturnal hypokinesia should focus on maintaining stable dopamine levels throughout the night (Bhidayasiri et al., 2016c). The use of long-acting drugs or continuous short-acting drugs for symptom control has been shown to be feasible and is known as continuous dopaminergic delivery"
Yes, it definitely improved my turning over in bed and getting up out of bed. I don’t think it has my sleep pattern any worse, which was pretty bad before and is still bad
Currently I take 2 capsules Rytary 6:00 am, 11;30 am, 4:00 pm and 9:30 pm. Fall asleep around 10:00 pm, awaken around 3:00 am to use bathroom. Usually return to sleep but 2 nights lay awake for 1-2 hrs.
Tremors in both hands and jaw are causing me distress when I first get into bed sometimes lasting nearly an hour and again after awakening at 3:00 am.
I also have begun having trouble positioning and turning over even tight hatter the 9;30 dose. I determined that it was delayed Rytary. I take 5mg melatonin 4-5 times a week. I have no nightmares. I’ve had wonderful, colorful, interesting dreams since early childhood. No lucid dreams. Movement Specialist prescribed Klonapam but it made me very bleary the next day. I do laugh , and say words during dreaming, BUT our mini American Shepherd (Aussie ) comes to me and stands on me…sometimes touching my face with her nose. My husband snores and moans and groans and she does nothing!
My husband started taking 100/25 controlled release at10 pm, about 6 months ago. It wasn’t so much to help him move better at night but to help with first doses of meds in the morning from causing severe dyskinesia after an hour of taking it. He doesn’t really get too much discomfort at night. He’s been dx 10 years this summer.
The PD nurse was concerned he had no meds after 5 30 in the evening, until 8 30 in the morning and the sudden boost of levadopa in the morning might be causing the dyskinesia. He can function quite happily without evening and night meds but this CR dose has definitely helped with dyskinesia.
I could not move in bed and was very difficult to get out of bed my movement disorder doc prescribed Amantadine 100 mg one at bedtime with 25/100 cr c/l worked like a charm for the movement. Didn't help spleep
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