Sleeping issues

[Lorraine33]

I wonder if any PWP experience rapid eye movement disorder and how is it treated? My husband has been diagnosed and it affects my own sleeping as he wakes me up several times a night.

[ddartmouth]

Hello Lorraine,

Sorry to hear about your husband's (and your) issues with RBD.

Has your Neurologist suggested/prescribed any meds?

The typically suggested meds for RBD are Clonazepam (pretty strong stuff) and Melatonin (much less strong stuff).

I was diagnosed with RBD around 2016 (before I had any symptoms of Parkinson's). I at the time was taking Xanax on an as needed basis (for other things). I found that helped me reduce the frequency and severity of the RBD episodes. Over the years my symptoms of RBD diminished so it was almost non-existent (and I stopped taking the Xanax).

Currently I take melatonin (for insomnia) and find if I skip that I sometimes have one of my very reduced RBD episodes.

Hope this helps (at least a little).

Also the usual disclaimer ... I am not medical doctor and you and/or your husband should not change the medications your taking without consulting your doctor.

[Lorraine33 in reply to ddartmouth]

Thank you. I knew about melatonin but live in Uk so have to wait to get it on script.

Appreciate your reply

[Abinat58 in reply to Lorraine33]

My husband’s REM SBD started way before his Parkinson’s diagnosis. We manage, but his PD nurse told us to ask the GP for Circadian (melatonin) if it gets too disruptive/dangerous. He usually remembers very little of the night, but I can lose a lot of sleep and I need my sleep to be able to cope with the day ahead.

You could get the prescription even if you don’t use it immediately.

[Lorraine33 in reply to Abinat58]

Many thanks

[Bolt_Upright in reply to ddartmouth]

As somebody with RBD (and a sore left shoulder/arm), my heart always drops when I read of somebody who started with RBD and progressed to PD. Please reach out if you ever want to compare protocols. Bolt.

[Bolt_Upright]

There are a lot of lifestyle changes that may reduce RBD:

1: No alcohol.

2: No caffeine after 2 PM.

3: Set a regular bedtime and stick with it. If you can, get in time with the sun (get up at dawn, wear blue blockers after 8 PM). I go to bed around 11 PM every night.

4: No food after 8 PM.

5: Cut out the violent TV and movies. Documentaries are your friend.

6: Cut back on sugar, especially at night.

7: Reduce stress.

I probably missed something. Good luck.

[Lorraine33 in reply to Bolt_Upright]

Thank you for that

[asmckay]

Dear Lorraine. You could try the Zeez Sleep Pebble. It is my company. I am here because my children's father has PD. We have around 30 users with PD. Please look us up and contact me if you want to chat. Anna

[hmm777]

Yes, I suffer from RBD and have had some very loud, hilarious, and sometimes scary episodes. The thing that helped me did not involve additional medications, thank goodness. I tried a weighted blanket and it made a huge difference. Almost no incidents since I started using it, and the ones I have had have been minor. (Most importantly, I have not left the bed during any of them.)

Here's the one I got, in case you are interested. It's available in several different sizes and weights.

amazon.com/gp/product/B075W...

[Lorraine33 in reply to hmm777]

I will have a look. Thank you

[Hikoi]

LorraineIt would be good if you find something to control this but I dont know of anything, clonazopm may work or melatonin. The important thing is your safety. You may have to resort to sleeping in separate beds if not separate rooms

[Lorraine33 in reply to Hikoi]

I so hope it doesn’t have to come to that; but it might happen.

Thank you for your thoughts