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pamela51 avatar

My husband has REM sleep behavior disorder (RBD)

Sleep Health | Last Active: 11 hours ago | Replies (98)

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

@azsingularity

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

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Replies to "@azsingularity It's been a while since you last posted; I was wondering how you are doing...."

@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.