I am at my whits end, trying to get a half decent sleep throughout the night.
This last week has been particularly rough with lack of sleep. It’s causing anxiety and hypertension.
I’m on metazapine and melatonin, together with my slow release co-benaldopa tablet.
I religiously go to bed at 10pm, and have no trouble getting straight off to sleep, but within 1hr to 2hrs, bang, I’m wide awake, and then it starts, the horrible feeling, could be in one leg or both or down my arms as well. It’s like an electric current going through my body and the only relief is to get up and walk around!
Last night was a killer, the restless legs would not go away,. I’m so tired during the day and regularly fall asleep in the chair.
I’ve tried to get in touch with my Parkinson’s nurse, but never get a call back.
I feel as though I’m never away from my doctors, who I have to say are very good.
Is there anything else I can be doing, to try to get a few hours sleep during the night?
Many thanks.
That sounds incredibly tough and exhausting, especially when lack of sleep starts affecting your days too. What you’re describing sounds like it could be linked to restless legs or changes in how your medication is working overnight, but it’s important a professional reviews it. If your Parkinson’s nurse hasn’t been able to get back to you, please reach out again or contact your GP to explain how bad things have become — they may be able to adjust your medication timing or review other causes.
You can also speak to our helpline on 0808 800 0303 or email [email protected]. Our trained advisers can talk through what’s happening and help you find practical ways to manage symptoms and sleep better. You don’t have to face this on your own. 
Parkinson’s UK Moderation Team
Hi Eddy.
Ahhhhh, the dreaded restless legs. I suffered from this a year or two ago. As soon as I woke during the night, my legs became very fidgety and ‘restless’. Luckily, I have a great PD Consultant and Nurse to turn to. They prescribed a drug called Caramet, 25/100mg to be taken at bed time. It’s a slow release medication which provides the brain with ‘dopamine’ slowly so your level is maintained overnight.
What a relief, for the first time in months, if I woke at 2 or 3am, I didn’t need to get up and walk off restless legs!!!
I still wake most nights, but now I can just roll over and fall asleep again. Before the Caramet however, I tried melatonin which didn’t work for me. It just left me ‘groggy’ the whole day so it was stopped. Caramet works for me BUT… you must speak to your nurse, Consultant and even your GP asap.
Cheers
D
Good afternoon Eddy … I am 71 years old and diagnosed in June 2023. I am on both
Co-careldopa and Rasagiline for Parkinson’s and quite a few other drugs for other conditions. This got my Parkinson’s under control BUT I started to have severe sleep issues including Insomnia, Restless lag, extreme nightmares etc. I saw 3 neurologists privately, one for my sleep issues who told me that my sleep issues were almost certainly caused by the Co-careldopa. I was put on quite a lot of medication like Melatonin and Quetiapine which did not work.
So I saw the third neurologist who examined my datscan, which he thought fairly normal and he thought my Parkinson’s symptoms were mild. My most troublesome symptom of gait freezing he thought was not Parkinson’s. So as a trial I stopped my
Co-careldopa for 2-3 months. I found my sleep improved greatly but my balance was far worse. So as a compromise I now take Co-careldopa at 7.30am and 1pm and have stopped the evening dose. This has worked perfectly for me.
Something you might talk to your Parkinson’s medical team about.
Best wishes
Steve2
Hi eddy i had the same i was on sinemet but changed to modapar no more restless legs
Hi there eddy, I can sympathise with you as I had same problem for a while. My neurologist suggested 100mg Gabapentin at breakfast time, 100mg in the evening and 300mg at night time… Worked a treat. Good luck
Hi. I know how you feel. Parkinson’s sucks. I suffer with restless legs as well. They should rename it restless body syndrome. I have been up since 2am. Like you I go to bed at 10am. Once my medication has worn off I can’t move in bed. It’s like I am stuck to the bed so I have to wake my poor suffering wife up so she can help me get up. So after shuffling ten laps.of my living room I have decided to sit down I join the forum. I am going onto the pump soon so I will be getting my medication 24/7. I hope this makes things a little easier. I wish I could give you tips on how to manage restless legs better but I am 18 years in and I find that we all find our own way of coping. Good luck. Keep on keeping on. Geffino
Restless legs were one of the most severe parts of my Parkinson’s and occurred in both my arms and legs on a regular basis I was put on Rotigotine in the form of a transdermal patch which I change once a day. It has been a game changer.
I also take sinemet four times a day and the slow release sinemet at night. These help with my tremor and other symptoms but didn’t improve the restless legs which were getting worse.