REM sleep behaviour disorder

[Scragger]

Hi again

I’m interested in knowing if there are people with MSA who do not have REM sleep behaviour disorder (REM dream enactment ranges in severity from benign hand gestures to violent thrashing, punching and kicking) as part of their diagnosis.

Kind regards to all.

[Derkie54]

Hello,

My wife doesn't have REM sleep issues and doesn't really have much pain . She's not on any meds either for the MSA.

She's not in the early stages having been diagnosed in 2016 although I saw signs many years ago. She is virtually bed bound having had 2 strokes recently, does make me wonder if there is a connection between strokes and MSA although the doctor thinks not.

Surprising how much this MSA varies symptom wise from from person to person

Take care

Derek

[Lincsoldbird]

Paul does have them but strangely enough not as often as he did, we can't date it to a change of medication, so for us it is one of life's great mysteries but just greatful that it seems to have declined as he did go through quite a phase of quite violent dreams.

Take care

Mel

[GHG_]

Hi Scragger, I am diagnosed with MSA and when I first saw my neurologist around 2019 he asked if I ever acted out my dreams (REM sleep behaviour disorder) I said no at that time but susequently I started speaking or shouting out, moving my arms and hands and I have jumped out of bed when in my dream I was jumping from steps suspended in the air. The first thing I knew I was face down on the carpet having hit the bedside chest of drawers on the way down. I had a bruise in a line across my chest. My neurologist put me on to 3 X 500 microgrammes of Clonazepam before bedtime and this has stopped my most violent movements. Hope this helps and good luck

Graham

[Yanno in reply to GHG_]

Hello, Jackie used to have severe overnight REN sleep. I used to say she was quietly thumping me for the bad things I’d done all night.

Like Graham, Clonazepam did the trick. But be aware the so called half life is quite long and Jackie was getting quite tired which we discovered was from the drug building up. Over time we found a smaller and smaller amount did the trick. For us it was easy to reduce as Jax had it in liquid form through the peg.

Eventually the REM reduced to the point where Jax no longer takes any meds. We still get the occasional nights thrashing and I have to think through the day as to what I’ve been particularly bad about that day!

Good luck, take care, Ian.

[esj20]

Hi

This was one of my first symptoms, 2018, and still continues today. I don’t fall out of bed anymore as my mobility is very very restricted.

My Neurologist put me on 6mg melatonin per night which helps but, as a result I sleep alone

Yours,

Alec

[mandg]

Graham also doesn't have REM issues, but he does talk in his sleep, although I don't know what he's on about,😄 and he wakes up trying trying to tell me such a tale, which may be what he's been dreaming about...again it never makes any sense . But luckily no thrashing about.

[Ruffner]

My husband had REM 15-20 years before he was diagnosed. His was violent so early on in our marriage we had to sleep in separate beds. The intensity slowly decreased and presently he has very little REM issues. His MDS did prescribe Melatonin in 2021 and he does sleep a little better. We were told that REM does often decrease with progression of MSA.

[Lassie1331]

My husband had many episodes of being violent it his sleep and shout loudly when his speech was clearer, before he was ever diagnosed with MSA. It was so violent I had to move out of the bed. No-one at his diagnosis ever picked up on what we said so he wasn’t told he had REM sleep behaviour disorder. He still thrashes in his sleep but the shouting has quietened as his speech deteriorates, though he moans as if in pain while sleeping. He has only been diagnosed in the last 3 years but I reckon the changes were noticeable 8 years ago.

[janecbain]

I don't have any sleep problems! I used to get vivid dreams but nothing more than that and recently I rarely dream at all. I have had a diagnosis of MSA for the past few months based on my loss of voice , early falls and incontinence. I don't know if the diagnosis is correct or not but I continue to exercise as much as possible and stay hopeful despite falling over frequently and not being able to communicate very well. Its not all bad - at least it's not yet !!!