Are there common side-effects to Rytary w... - Cure Parkinson's

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Are there common side-effects to Rytary withdrawal?

kaypeeoh profile image
12 Replies

I've been on Rytary for 2 years. Before that I had been on Sinemet for 4 years. I quit taking Rytary about a month ago. My only side effect seems to be insomnia. Maybe insomnia is the wrong word. Eventually I get tired and can sleep for a few hours. But I doubt it adds up to 8 hours over 24 hours. For example I woke today at 3AM. Any suggestions or ideas?

TIA,

kpo

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kaypeeoh
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Smittybear7 profile image
Smittybear7

Having similar problems with sleep. I take 1 (25-100 c/l) at 6am,10am,2pm,6pm. About 10:30 p.m. I sometimes get a tremor or shaking in my right hand and spasms cramping or tremors in my leg and sometimes in my foot. A little annoying but tolerable. It subsides on its own sometimes in a short period of time and sometimes it takes a little longer to stop .I take turmeric, magnesium, super calcium plus, Neuropath-ease and 5mg baclofen about 10PM. I fall asleep anywhere from 11 to 1 .sometimes I am awake but peaceful for several hours. Other times I wake up every 2 or 3 hours to go to the bathroom because I drink a lot of water to prevent dehydration and I also have a problem with constipation. I haven't had a full night sleep for a long time. The naturopath/pharmacist added magnesium theonate. Hopping that will help. I haven't started that yet but have read it is helpful. I also have osteoporosis so I take a lot of supplements. I'm trying to avoid additional medication. I am concerned about the interrupted sleep also.

Dabaa profile image
Dabaa in reply toSmittybear7

Stop drinking fluids in the evening, get a black-out sleep mask, kill all devices and wi-fi before bed, avoid blue light by running f.lux or similar on computer and 'A Soft Murmur' (or similar) white-noise generator APP on phone, limit napping, establish a routine; take Mag-L-Threonate, melatonin or its precursor 5HTP, use lavender essential oil, massage mastoid process/occipital ridge X30 strokes, clear your conscience through prayer - sleep like a baby.

Smittybear7 profile image
Smittybear7 in reply toDabaa

Thank you

Smittybear7 profile image
Smittybear7

Why did you quit Sinemet?rotary? I d love to get off the c/l. Any suggestions?Thanks

kaypeeoh profile image
kaypeeoh in reply toSmittybear7

For 6 or 7 years I've been reading about 'Off periods' on this and other websites. I have never had an 'off period'. I was originally Dx'd with PD because of a dominant-hand tremor. I tried several different medications and nothing ever made any difference. Now I'm wondering if Rytary is the reason for weight gain over the past few years. Before being Dx'd I weighed 170. Since then I've gone to 210. I don't see any positive effects from the medication. Why take it?

Dabaa profile image
Dabaa in reply tokaypeeoh

Because your betters have decided to fry your cerebellum and dehumanise you. You, a mere minion, must obey: gingerbreggin.substack.com/...

kaypeeoh profile image
kaypeeoh in reply toSmittybear7

" did you quit Sinemet?rotary? I d love to get off the c/l. Any suggestions?Thanks" Why do you need c/l? I don't have any problems like stiffness or freezing in place.

Smittybear7 profile image
Smittybear7 in reply tokaypeeoh

2017 diagnosed with parkinsonism. 2021 shuffling of feet,tremor, stiffness,cramping. I had to have help for dressing, getting in and out of the car,on and off of the toilet, chair .PT,OT - August. October c/l low dose.I now take one-25-100 c/l 6am,10am,2pm,6pm. I am able to do everything myself and have recently started playing Pickleball again. I would like to get off the medication. I also have osteoporosis and am not on medication for that at this time. I take a lot of supplements.

Dabaa profile image
Dabaa in reply toSmittybear7

Some folks are substituting mucuna pruriens and green tea extract for some - or all - of their C/L.ss

kaypeeoh profile image
kaypeeoh

I hate the idea but I guess I do have PD. Lately I tend to trip over invisible roots. Today I had Botox for my left arm. The doc asked whether I had taken my morning dose of Rytary, I lied and said, "um, sure..." Then while examining my arm before injecting Botox she said, "Vot eees goink on here?" in her strong slavik accent. She was able to palpate that I had too much tone in my arm for having taken Rytary, So Rytary most be doing something although I can't tell.

kaypeeoh profile image
kaypeeoh

"Common side effects?" Yesterday I saw the neuro for botox treatment of my dominant-hand tremor. While in the exam room I was producing a whistling noise during exhalations. The aide sitting on the far side of the room heard it and commented. The common side effects of Rytary include:

dizziness

dry mouth

headache

nausea

insomnia

unusual dreams

I've been off Rytary for 6 or 7 weeks now. No dizziness, dry mouth or nausea but headache and insomnia for sure. Congestion might explain the whistling . Today the whistling is mostly gone.

kaypeeoh profile image
kaypeeoh

My wife and neuro have concluded I haven't been taking the Rytary, Not difficult to determine; Several dozen un-opened bottles have formed a wall on the kitchen counter. Also the pharmacy called to say I'm running out and need a refill of Rytary. So I'm back on the six capsules day, two caps one hour before each meal.

Stopping the medication was an experiment. Now I can see what happens row that I've re-started the Rytary.

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