1. < Sleep Health

My husband has REM sleep behavior disorder (RBD)

Posted by pamela51 @pamela51, Dec 21, 2019

Little is know about this disease, but it has a major effect on a family. My husband was diagnosed 10 years ago. Is anyone else dealing with this?

Interested in more discussions like this? Go to the Sleep Health Support Group.

Cheryl D | @nmrcdigman | Apr 11 1:05pm

REM in a partner can definitely be terrifying. When my husband was first diagnosed about 10 years ago, one of the things mentioned was this can be an early indicator of possible Lewy Body Dementia years later. Many people do not end up with LBD. We are some of the unfortunate ones, he did finally show signs of LBD and was diagnosed about 18 months ago.
This is ironic - as LBD progresses, the REM regresses! He also takes Clonazepam and Melatonin (pharmacy grade from a compound pharmacy the sleep doctor recommended). If I were to go back 10 years, I would get a second Neurological opinion and encourage a brain MRI for a base line.

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Mentor
John, Volunteer Mentor | @johnbishop | Apr 11 1:50pm
In reply to @nmrcdigman "REM in a partner can definitely be terrifying. When my husband was first diagnosed about 10..." + (show)
@nmrcdigman

REM in a partner can definitely be terrifying. When my husband was first diagnosed about 10 years ago, one of the things mentioned was this can be an early indicator of possible Lewy Body Dementia years later. Many people do not end up with LBD. We are some of the unfortunate ones, he did finally show signs of LBD and was diagnosed about 18 months ago.
This is ironic - as LBD progresses, the REM regresses! He also takes Clonazepam and Melatonin (pharmacy grade from a compound pharmacy the sleep doctor recommended). If I were to go back 10 years, I would get a second Neurological opinion and encourage a brain MRI for a base line.

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Hello Cheryl @nmrcdigman, I see that you recently joined and wanted to welcome you to Connect. Since you mentioned you are the caregiver for your husband who has Lewy Body Dementia along with the REM disorder I thought you might find some of the other discussions on LBD helpful. Here is a list of the discussions and comments from other members for LBD - https://connect.mayoclinic.org/search/?search=lewy%20body%20dementia.

There are also many discussions in the Caregivers and Caregivers: Dementia Groups that you might find helpful. Here are the list of discussions for both groups:
-- Caregivers: https://connect.mayoclinic.org/group/caregivers/
-- Caregivers: Dementia: https://connect.mayoclinic.org/group/caregivers-dementia/

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looplu79 | @looplu79 | 5 days ago
In reply to @pamela51 "Clonazepam, plus 5 melatonin, every night." + (show)
@pamela51

Clonazepam, plus 5 melatonin, every night.

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I have been faking melatonin 5 mg nightly and it certainly controlled my thrashing about
I do dream but most are not unpleasant
My husband says I talk loudly sometimes
It started about three years ago when I would fall asleep I often leapt out of bed in my sleep causing injury
I had a Sleep study which diagnosed REM sleep disorder
Since taking melatonin I have not had episodes like before
I suggested that Effexor was related to this disorder I had taken it for depression 17 years ago
My neurologist did not agree but I decided to
wean myself off
I am now am down to a very low dose and am
Convinced that Effexor had contributed to my sleep
Disorder
The neurologist was clear that it would lead to Parkinson’s and Lewis Body
I had no symptoms of either then or now
I just hope that will not be the case or that I may have a few more years of normality
My husband has no
Problem with my occasional
talking in my sleep
I have never been violent

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