Has anyone dealt with REM Behavior Disorder (RBD )

Posted by Sarah @emyliander, Apr 22 11:07am

I have had a sleep study and met with my Neurologist who thinks I have RBD and wants me to meet with my sleep specialist . RBD has poor memory as on of its components. My Neurologist didn’t tell me I have MCI but he put it as my diagnosis on my discharge paper. I have been on
Venlafaxine for many yrs and discovered that it is one of two meds that can cause RBD so I met with my GP and asked to switch off it. I am transitioning onto Bupropion. An MRI 2yrs ago showed “ white matter”.
My current symptoms are poor memory which interferes with my daily activities, loss of smell,
Nightmares in which I scream and kick and have fallen out of bed hurting myself. Foods I have loved I no longer care for, 8lb weight loss, poor concentration and feeling overwhelmed, keeping my house tidy seems impossible.
I’ve been told by Neurologist to get a test to rule out Lyme disease. Also to make an appointment for CBT classes.
Looking for some insight.
Thank you.

Interested in more discussions like this? Go to the Aging Well Support Group.

@raebaby

Two of my four children live close by and help me. My husband had friends in our wine making group right until the end. He had a beautiful view of our mountains and meadows on our 25 acres . He didn't lack for friends, family or stimulation, He just wore out and wasn't interested anymore. My husband started going "off " around 70. He died suddenly at 80.
Having Parkinson's and all the worry that goes with it is very hard on the victim and the caregiver.

Jump to this post

How did you cope? I am having a very hard time with my anger at him hitting, kicking, and trying to strangle me in his sleep. I took it personally. Add to that his memory problems. It is too much to bear!

REPLY

What is MCI? What are CBT classes? My husband has REM behavior disorder and his memory is the pits. It is a lot to bear. I can't seem to get over the anger of being hit, kicked and strangled. I took it personally. Help! I hope you are OK. How did your wife cope?

REPLY
@overwhelmed2016

How did you cope? I am having a very hard time with my anger at him hitting, kicking, and trying to strangle me in his sleep. I took it personally. Add to that his memory problems. It is too much to bear!

Jump to this post

I sent you a private reply. If you don't get it, please contact me.

REPLY
@overwhelmed2016

Did you suffer with hurt and anger? I took it personally and am having an awful time getting over it.

Jump to this post

I’m sorry but I don’t remember what you are referring to “did I suffer with hurt or anger”.
I am the one who has REM.
If you refresh my memory I’ll be happy to answer you.
Thank you.

REPLY
@emyliander

I’m sorry but I don’t remember what you are referring to “did I suffer with hurt or anger”.
I am the one who has REM.
If you refresh my memory I’ll be happy to answer you.
Thank you.

Jump to this post

Oh, I didn't realize that you were the one with RBD. Did you strike out at your partner in your sleep? How did they react? Were they angry? How did they get over the hurt and anger? I am really suffering and any help you could give me would be greatly appreciated. We're you able to decrease the RBD? I hope you are okay. Thank you.

REPLY

I was married for 58 years until my husband died with Parkinson's disease. I found out on my honeymoon, much to my shock, that he already had REM sleep disorder at the age of 20. It's a big symptom Parkinson's patients have. We ended up in separate bedrooms.

REPLY
@raebaby

I was married for 58 years until my husband died with Parkinson's disease. I found out on my honeymoon, much to my shock, that he already had REM sleep disorder at the age of 20. It's a big symptom Parkinson's patients have. We ended up in separate bedrooms.

Jump to this post

I have only in the past three years showed signs of REM sleep disorder
Although I have shouted and kicked at nights it is usually a dream where I am
being held down etc
It is all over in minuites
I have never exhibited any violence towards my partner and for this I am grateful
However I am taking Apixaban for DVT and have fallen out of bed and hit my head on various occasions often requiring a brain scan
and visit to Emergency Dept
My consultant started me on Melatonin I now take 6 mgs nightly and my dreaming has generally become less vivid although I am told I chatter throughout the night
No falls for months now thankfully
I am also on
Venlafaxine for over 20 yrs so asked my doctor to allow me to come off I am
Now on a well controlled decreasing programme recommended by the Maudsley Hosp
I show no sign of Parkinson my doctor says but realise this is inevitable with Rem disorder
I am just thankful I do not have the tendency to attack anyone
Deeply distressing for all concerned I hope some solution is found
Best wishes

REPLY
@overwhelmed2016

Oh, I didn't realize that you were the one with RBD. Did you strike out at your partner in your sleep? How did they react? Were they angry? How did they get over the hurt and anger? I am really suffering and any help you could give me would be greatly appreciated. We're you able to decrease the RBD? I hope you are okay. Thank you.

Jump to this post

I’m not sure who is talking to who 🤣
But I’ll answer your question. My husband wasn’t angry or hurt because he realized that I didn’t know what I was doing.
I never really hurt him.
The Doctor who did my sleep study has started me on Pregabalin for acute Periodic Limb Movement which has helped me stay asleep, but I believe it is making me more tired during the daytime and I already have Excessive Daytime Sleepiness anyway and take medicine for that, it seems like a never ending cycle. I see my Neurologist tomorrow, I’ll see what he has to say about it all !

REPLY

Thank you. My name is Sharon. We'll that is good that your partner understood. I woke up being strangled once or twice. Kicked. Big leg bruises. Hit. So I interpreted it as hidden aggression towards me. Cos u don't do in sleep what u wouldn't do awake. I hope you are able to get your excessive daytime sleepiness under control. Thank u for the drug advise. Good luck. Sharon

REPLY
@overwhelmed2016

Thank you. My name is Sharon. We'll that is good that your partner understood. I woke up being strangled once or twice. Kicked. Big leg bruises. Hit. So I interpreted it as hidden aggression towards me. Cos u don't do in sleep what u wouldn't do awake. I hope you are able to get your excessive daytime sleepiness under control. Thank u for the drug advise. Good luck. Sharon

Jump to this post

I can understand your being hurt, a man has a lot more strength than a woman—usually.
Maybe if you accompanied your partner to his Doctor appointment they could explain why these actions happen.
I fell out of bed and hurt myself, I certainly wouldn’t do that while awake. It’s not due to repressed aggression toward anyone. When it happens with me it’s because in my dream, I am being attacked by someone and i am responding to that.
You can also do research online, there’s quite a bit of info about REM Behavior Disorder,
I hope things will be better for you, thank you for your well wishes.

REPLY
Please sign in or register to post a reply.