My husband has REM sleep behavior disorder (RBD)

@tngirl103
Ugh! I have ALWAYS hated driving in unfamiliar places! I feel like I can't find all the signs and lights and it's all coming at me at once! If I have to go to the city (San Francisco) I'm a basket case the whole time and exhaused when I get home! One of the things that I learned before I even knew I had ADHD was that chewing gum in church helped me pay attention to the sermon and to not fidget so much. It helps in bible study too!! Bible study is the hardest because I never get enough sleep since I have to get up so early to be there by 9. I go to church out of town so it takes 40ish minutes to get there and I have to get up in time to get myself ready and feed the critters. My husband doesn't stop snoring loudly, yelling and thrashing until about 3am. No sense even trying to go to bed before that!

@birdiejayne
Goodness! You are far away from where I live in MS. Would hubby consider the melatonin or another sleep aid? I think mine would, but as I mentioned, for some reason the restlessness is happening less often.

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pamela51 , it’s been a few years since you posted. I am wondering what happened with your husband. Mine was diagnosed in 2019 and had been in cognitive decline steadily since the diagnosis.

He can not take clonazepam, as it sent him into a terrible drug induced dementia state. I feel like his dreaming is progressing and it is getting worse.

I haven't posted anything for quite awhile. It has now been 4 years since my husband was diagnosed with PD, after having RBD for 20 years prior. The treatment for RBD has remained the same. The PD has continued to slowly progress. Falls are common. It is becoming harder to swallow, his voice is weaker. Sometimes he falls out of bed, and, wonders if he hasn't had an RBD dream, since he can't remember how he fell. He continues to see his sleep specialist annually, and a neurologist bi-annually.

My husband was put on 9 mg of melatonin. He was diagnosed with very mild apnea and a machine was not recommended and he did not qualify for one.

@azsingularity

It's been a while since you last posted; I was wondering how you are doing. How is the sleep problem?

@hopeful33250 Oh gosh, I'd almost forgotten about this thread--but thanks for asking.

Up front, I'll answer your main question, then put more detail below that: I completely stopped taking the melatonin almost a year ago and, strangely, only have 1-2 "acting out" incidents per month... and they're pretty mild. So, big drop in frequency and intensity. Not sure why. Now, some detail...

The worry about PD was beginning to overwhelm me, so I started seeing a therapist. Long story short, I/we are now not 100% sure what I'm experiencing is actually RBD. Though still uncertain, this has been a huge load off my mind.

I could go into detail, but don't want to totally hijack the OP's thread. Suffice to say the therapist asked a LOT of very detailed questions about the exact nature of my dreams, the acting out, etc. and, most critically, had me video/record myself sleeping for several weeks. We caught video of all my "RBD episodes" during that time. He went far more in-depth than either the sleep doc or neurologist at Mayo ever went. They just took what I said about "acting out" in my sleep at face value.

He acknowledged that he still can't give a definitive diagnosis, but did not feel that what he saw/heard in my recordings was RBD. He said he HAS seen recordings of actual, confirmed RBD, and my stuff paled in comparison. More likely some other parasomnia (I forget the details).

It's been nearly 3 years since that original diagnosis of RBD at Mayo, and I finally found a new neurologist here where I live now. I'll see her in a couple months and we can pick this thread back up.