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.
Have you tried Mucuna and/or Vitamin C and/or B1 and/or Coconut oil and/or MCT oil?
Any of these have helped people with dementia as well as constipation.
How do you"thicken his water" ?
Has he had DBS?
Autumn, my HWP is declining very rapidly as well, sorry to hear about your husband. As far as the constipation, thi sis what our naturopath told us to get - completely safe, highly effective and one can take it for the rest of their lives - it works GREAT. Check out Lane Innovative H2Go. A super great product. I take it, my mom and sis take it as well as my hubby. He now goes 5 to 6 days a week instead of every 3 to 4 days. You have to find the right dose with a little trial and error, but never once has anyone of us had diarrhea - we just titrate it. YOU can get it on Amazon or I get it from their website and subscribe. GOOD LUCK and God Bless You and Your Family.
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.
Parkinson's constipation remedies here: healthunlocked.com/cure-par...
Very important topic and often little discussed by doctors. Thank you very much
I take one 25/100 C/L ER at bedtime and it does not interfere with my sleep.
How many hours of sleep you get in the night?
5-6
Do the bradykinesia and tremors interfere in the sleep. How you manage it
Bradykinesia not a problem. For tremors I hold on to a vibrating massage ball for a few minutes - that seems to help.
Hello Park Bear. Can you recommend a vibrating ball you like for tremors at night? Thank you!
The one I bought at Amazon is no longer available. So I'm not in a position to recommend any particular one.
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.
Thank you for this information. Could-you share the brand you use?
I’m no longer seeing the one that I bought but it was something like this:
Uneeruiqy Metronome Watch, Wearable Vibrating Metronome Wrist Watch, 40-240 BPM Smart Instruments Pulse Beat Counting Watch for Sport Running, Music Practice Trackers, Music Instruments
Re: my previous reply, I just searched on Amazon for “wearable digital metronome.” There’s a wide price range but the one I cited is $29.99.
This is the same concept as the beech band...
I assume the Beech Band will have features more specifically targeted for PwP. This was kind of a “what the heck, might as well try this in the meantime” kind of thing and I was frankly quite surprised at how well it worked for me. Makes me hopeful that the. Beech Band will work well for me once it’s available.
I take a Rytary at or cose to Bedtime. I can't tell if it interferes with sleep or not.
Thanks for investigating this.
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.
Then there's this article on sleep and dyskinesia:myparkinsonsteam.com/resour...
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"
I take 1 x 100mg controlled release Madopar last thing,otherwise the pain and discomfort from rigidity keeps me awake. I sleep 6 hours max
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
I’ve not heard this before! I was diagnosed 2010!
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!
What does "even tight hatter the 9;30 dose" mean?
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
I have done extensive testing. If I don't take Stalevo before bed, I wake up after 1 hour and can't sleep. If I take it, I sleep for 5-6 hours without waking up. So it's nonsense that Levodopa interferes with sleep.
Turning over in bed was becoming a problem for me but thanks to my son in-law who was an occupational therapist, I now have a "bed lever" either side of my bed and would not be without them. (the inverted commas are because I am not sure this is the correct term nowadays). I also use an Assistive Mobility Sheet from Parkinson's UK which is a great help. My other problem is Restless Legs which I don't think are dyskenesia. I am surprised no one has mentioned this as I believe it affects PwP often. Most drugs cause side effects so I am very cautious but have found Gabapentin helpful at night although I still have RL in the evenings sometimes. I find a cheap Electro Muscle Stimulator also from Parkinson's UK of some help but the instructions are poor and not everyone would be willing or able to remove shoes and socks before standing on the mat to use it for 15 minutes.
Brain Stimulation Can Restore Gait Function in Patients With Parkinson’s Disease
HYPERHOMOCYSTEINEMIA AND ITS TREATMENT IN PATIENTS WITH PARKINSON’S DISEASE 2016 (Treat it with folic acid?)Patients with Parkinson’s disease (PD) report a strong craving for sweets
Nicotinamide Exacerbates Motor Symptoms of Parkinson’s Disease in Mice
Vascular Dysfunction in the Brain as an Initiating Event in Parkinson’s Disease
