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pamela51 (@pamela51)

My husband has REM sleep behavior disorder (RBD)

Sleep Health | Last Active: Dec 13, 2020 | Replies (18)

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@pamela51

I believe that my husband's neurologist thinks that his RBD is controlled. It probably is as good as it will ever be. We have slept in separate rooms for many years. We tried twin beds, in the same room, but his dreams were too disruptive for me to sleep comfortably. When this first started, we slept in the same bed, and, it was terrifying. I was always "on alert". Aside from our sleeping arrangements, he is now beginning to have some slight symptoms, such as occasional hand tremors, and going "blank" when he is speaking. (He is a pastor. This is not good.) According to the readings, in the links, I have seen, this is not necessarily uncommon, in RBD patients. Our frustration is , his neurologist is not addressing this as a possible connection to the RBD. Instead, other tests are being done, and RBD, or, early PD doesn't seem to be even considered as a possible cause. The symptoms, at this point, are few and far between. More tests are coming. That is where we are right now. It is nice to have a place to share. I will suggest to my husband that he join this conversation. Thank you.

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Replies to "I believe that my husband's neurologist thinks that his RBD is controlled. It probably is as..."

Hi, @pamela51 – you mentioned that your husband, who is diagnosed with REM sleep behavior disorder, will be having more testing. What other testing will he be undergoing?

You also said you feel some symptoms other than the disruptive sleep behavior — occasional hand tremors and going "blank" when he is speaking — are related to the RBD, yet your neurologist doesn't think they're related and believes your husband's RBD is controlled. Have you considered the option of a second opinion?

@pamela51

I'm a retired pastor, but I volunteer at church, leading worship from the piano. I had a sleep study done in 2002, which confirmed sleep disorder. I learned after the fact that I had the disorder as a child, but was never diagnosed. Until a year ago I slept with a CPAP machine, but switched to a Bipap machine. We have a good sleep center not far from home. Am I correct to assume that your husband has had a sleep study?

I have similar concerns about getting totally lost in the middle of a song, and I have to read my sermons. I hope the people understand why I all of a sudden fumble for a few measures until I can get back on track. I often forget which verse we're on, and what key I'm playing in.

My wife was ready to send me to the guest room because of my snoring, and even more because I acted out some violent dreams. The snoring stopped when I started using the CPAP machine, but the violence only stopped as a secondary effect of a medication I take – Clonazepam. It's an anti-anxiety medication, but I don't kick or punch in my sleep anymore.

Has your husband received any treatment yet? I hope he does soon. Sleep disorders are behind a lot of health problems, as you already know. Have you learned anything new in the past month?

I see a neurologist because I have peripheral polyneuropathy, but we have never discussed a possible connection between the neuropathy and sleep apnea. Maybe it's something I should add to my list of things to ask about at my next appointment.

Jim

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