RBD/PD medication


#1

I’m diagnosed with RBD, one of the gateways to PD.

I’m on Clonazepam. Low dose of 500 mcg or less per night. Boy does it make me feel sluggish in the morning. I haven’t had caffeine for about 25 years but I started having coffee again in the morning to try and give me a kick-start. I was also put on to Eldepryl, to be taken each morning.

Both forms of medication together are the worst to get a good start to the day. I’ve given up Eldepryl. COnfused to be taking it in the morning as it says “could make you feel tired and sleepy”. That’s the last thing I want in the morning…

Sometimes I can get to sleep without Clonazepam, if the twitching isn’t too bad. I usually have a much better day afterwards if that’s the case.

Has anybody got any advice they can share about these forms of medication?

Thank you


#2

Hi planky,

In light of the information you’ve shared, I think you should speak to your GP about reviewing medication if you find that they’re not effective. You can also contact our helpline desk for advice on medication on 0808 800 0303 or email them at hello@parkinsons.org.uk.

I hope you find this information useful.

Best wishes,
Reah


#3

Hi Planky

I know exactly what you mean.I was prescribed Clonazepam to hrlp with my sleep problems, starting with 1x 500 mcg per night, but given instructions on how it could be increased if that wasn’t enough. It was suggested that I would probably need 3 tablets each night. However I have found the same problem as you - feeling dopy the next morning, even after just 1 tablet. This isn’t a problem if i am doing nothing special, However I find that taking a pill on alternate nights seems to work better - the second day i am much brighter. I now plan which days I need to be wide awake in the morning, and don;t take a pill the night before. I agree that coffee is sometimes a life saver in the morning.
Getting the right balance with medication is so difficult!
Good luck.
Knine


#4

Hi Planky and Knine

I have RBD too (for about 9 years) and had a very small dose of Clonazepam (half a tablet) at the start - it worked for a while but I felt very dopey with it and eventually stopped taking it. The RBD wasn’t too bad for a while after that then got worse again so back on to the Clonazepam I went for a few months, but to be honest, I really couldn’t be doing with it - so dopey I couldn’t function properly. No way I could have increased the dose. Luckily the RBD isn’t a problem all the time - it seems to come and go and there seem to be triggers such as drinking red wine and, bizarrely, eating nutmeg!

You mention twitching - maybe completely different from yours but I have nights where I can’t get to sleep because of twitchiness in my legs/feet and, for what it’s worth, I find that if I cool them down with cold water and take paracetamol, this works for me. Can’t remember what made me try paracetamol - probably a coincidental headache or something like that!

Probably should mention that I haven’t actually been diagnosed with PD but have a long list of symptoms and have been hanging around the forum for a while, finding it so very useful and reassuring - this is the first time I’ve actually plucked up the nerve to say something!

Hope you can work out a way to improve things…