My husband has REM sleep behavior disorder (RBD)

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.

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/

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

Ugh. I have RBD and am absolutely terrified of potentially developing Parkinson's. I've seen first-hand the ravages of that awful disease because two close family members (neither of them blood-relatives) have had it.

I was finally diagnosed with RBD in 2022 at Mayo, after about 5 years of increasingly dramatic (and increasingly frequent) episodes of punching, kicking, and shouting in my sleep. I always woke up immediately after lashing out or shouting, and always vividly remembered the dream. It was always some version of me being chased or attacked, either by people or animals (or insects).

Then, it escalated to me jumping completely out of bed one night. I passed it off as an odd, isolated incident... but when it happened a second time a couple years later, I knew something was wrong, and told my doctor about it. She sent me to Mayo Sleep Medicine.

I did a sleep study, but I slept so little and so poorly (not uncommon in sleep studies) that I didn't show any RBD symptoms.

My diagnosis was based on the obvious evidence and symptoms--confirmed by my sleeping partner. They can diagnose RBD based only on those factors, though confirmation with a sleep study is preferable.

I told my sleep doctor all that I had read about the correlation between RBD and Parkinson's, and she agreed that sending me to Neurology would be prudent.

The neurologist put me through a battery of tests, but did not find any evidence of PD, but wants to continue to see and test me yearly.

Ever since getting the RBD diagnosis I've been worried, every day, about developing Parkinson's. It's such a horrible disease. I hyper-focus and over analyze every little tremor or moment of clumsiness or forgetfulness that I have. I even stare at myself in the mirror looking for signs of "facial masking" and whatnot.

Sometimes I wish I didn't know. I know it's good to be proactive, but this has shown me that knowing I have a very high likelihood of developing a disease I was already terrified of... well... I realize it sometimes might be better just not knowing certain things.