REM sleep disorder

[Gobbsofjoy]

Please share your tips and tricks. Two or three times a month I act out dreams and kick the foot of my bed and wall. I also walk in the darkness and swing my fists at everything in my path. I have not injured myself yet and I fear it may happen. Of course I’ve tried to make my bedroom as safe as possible, and I can and do use clonazepam on occasion. Thankfully I live alone so I am not concerned about harming someone. I would love to avoid any broken bones. Please share any strategies and insights.

[jrg54321]

I close my eyes during violent parts of TV shows. I find I don't act it out in my sleep if I don't watch it.

[MarionP in reply to jrg54321]

That's more fundamentally appropriate to do than some might realize. Very good suggestion!

[Popple64]

Hi Gobbsofjoy

I was diagnosed in 2014, and sleep became an issue about a year after that. Living out nightmares my wife has taken quite a few kicks and punches, and even grabbed her head like a football dreaming I was a goal keeper. We discussed this with my PD nurse and found it to be quite common. I was put on Clonazepam 1 per night and the dreams were reduced in frequency and movement. I now take 2 per night but the second was prescribed by memory services. I currently suffer from very poor quality of sleep and tire easily.

Good luck

[MarionP in reply to Popple64]

1 and 2 of what, how much is a "1" or "2" dose quantity in mg please? For example, "1 = 0.5 mg." Exactly please. Very important.

[Popple64 in reply to MarionP]

Hi my dose is 2 x500 microgram tablets each night . But always check with your specialist.

[jrg54321 in reply to Popple64]

I have had some memorable "soccer" dreams! I played the sport a lot as a kid.

[docjleonard55]

My research told me that melatonin could be of use. I currently take 15 mg nightly, although it doesn't stop my RBD. Two nights ago I was under cover kicking in doors! It may work for you though.

[MarionP in reply to docjleonard55]

I've now gone over a month on my neurologist's suggestion of a minimum of 10 mg melatonin per night, suggested to go up to 20 as found effective as a start. Had to talk me into it because I'd not gotten much help from the lower doses of 3, 5 mg. But there is a nice minimum threshold and any excess sedative or morning effects do not increase with the dose increases. Works well. My neurologist also has said that clonazepam in this instance works well and not to worry about using a little clonazepam and melatonin. Works better when I don't have violent TV, or something like alcohol in the mix. So far using melatonin alone in the 10-20 mg range, with or without a little clonazepam (0.25 mg) working like a charm on my exact same REM sleep problem that Gobbs complains of.

[docjleonard55 in reply to MarionP]

You have to be careful with clonazepam. Bezodiazapines are highly addictive and withdrawal is terrible.

[MarionP in reply to docjleonard55]

Only with people who tend to abuse them or not use them properly or under medical supervision...and since you cannot get them without prescription, that concern is a bit overblown. Moreover, titrated gradual withdrawal works just fine. Absolutely nothing wrong with 0.25 mg clonazepam HS, and the generics may even have slightly less, they are legally allowed to vary down to 80% of claimed dose without disclosing, so if anything they tend to underdose. 35+ years clinical experience in the field.

[alexask in reply to MarionP]

Although I don't suffer from RDB yet I also noticed upping my dose of Melatonin to 10 mg has improved my sleep, and also helped reduce my stiff legs at night.

[october61]

RBD?

[CaseyInsights in reply to october61]

RBD: REM Sleep Behavior Disorder

[rideabike]

If clonazapam helps I wonder if amino acids might be even better. There a number of them that relax and aid sleep by reducing anxiety. I hardly ever have to use clonazapam after I started using this combo along with 5mg. extra strength melatonin. They are: L-theanine, L-tryptophan, 5TP, Taurine powder 500mg. and when I wake up too early I use Magnesium Bis-Glysinate 200mg to help get back to sleep. I've been on amino acids for about a year and haven't seen any drawbacks. In Canada I order from nationalnutrition.com

[aatje in reply to rideabike]

Do you also use levodopa?

[rideabike in reply to aatje]

I was using Mucuna P. but neurologist has asked me to go off of it until MRI is done in 3 weeks. He is suspecting cerebellar ataxia. I used to get 4 hours of relief but it dwindled so much I hardly miss it now. I shake a lot but it's a head and internal upper trunk tremor, symptom of cerebellum disorder, not PD. Could be a part of atypical Parkinsonism. I just hope I can hold my head still while the scan is going on. 😣

[MarionP]

I've now gone over a month on my neurologist's suggestion of a minimum of 10 mg melatonin per night, suggested to go up to 20 as found effective as a start. Had to talk me into it because I'd not gotten much help from the lower doses of 3, 5 mg. But there is a nice minimum threshold and any excess sedative or morning effects do not increase with the dose increases. Works well. My neurologist also has said that clonazepam in this instance works well and not to worry about using a little clonazepam and melatonin. Works better when I don't have violent TV, or something like alcohol in the mix. So far using melatonin alone in the 10-20 mg range, with or without a little clonazepam (0.25 mg) working like a charm on my exact same REM sleep problem and behavior symptoms that Gobbs complains of.

[chartist]

GOJ,

Some find benefit with the right dose of melatonin for RBD.

pubmed.ncbi.nlm.nih.gov/145...

sciencedaily.com/releases/2...

guysandstthomas.nhs.uk/reso...

mayoclinic.org/diseases-con...

Given the known safety profile at the suggested dosing and even higher dosing, it seems to be worth the effort to find out if you are one of the lucky ones who can benefit from melatonin.

Another consideration is that melatonin at 10 mg per night is also beneficial for PwP as outlined here:

healthunlocked.com/parkinso...

and here

healthunlocked.com/parkinso...

Good luck!

Art

[Dragona]

Last week my husband was really bad with this so started him on tablespoon glycine powder, 1 l’theanine tablet and 5mg melatonin and so far it has stopped

[Gobbsofjoy]

Thanks for all the ideas. I had not thought of increasing melatonin past 5mg so I will give that a try.

[Astra7]

My neurologist recommended melatonin. I take 10mg controlled release. Still get the acting out on occasions.