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?

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looplu79 | @looplu79 | Oct 31 11:29am
In reply to @beverlysnyder58 "My husband has been showing significant signs of REM behavioral sleep disorder. It started about 8..." + (show)
@beverlysnyder58

My husband has been showing significant signs of REM behavioral sleep disorder. It started about 8 months ago with me waking up to him hitting me. My husband would never hurt me. We’ve been married 49 years. It happened again about a week later. He fights in his sleep nearly every night. I have to wake him up many times. I don’t sleep. I’m so tired all day long. Any ideas will be greatly appreciated.

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I was diagnosed a year ago
I was not violent but would jump from the bed often hitting my head or face
My specialist prescribed
Melatonin between 1-10 mg
I found 5 mg effective
Only take minimal dose
There is another drug used but can’t recall it just now

REPLY
buddabu | @buddabu | Nov 2 2:11pm

My husband was diagnosed with it about 7 yrs ago by a sleep specialist in AZ. He advised Melatonin and gradually titrated up until he stabilized at 6mg. He is now on mertazaphine to stimulate his appetite. He has been able to get off the melatonin.

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jaybee51 | @jaybee51 | Nov 29 12:13am
In reply to @pamela51 "I believe that my husband's neurologist thinks that his RBD is controlled. It probably is as..." + (show)
@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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I started having them about 3 years ago and began reading about them. I read that about 80% of people who experience RBD will develop a neurodegenerative disease such as Parkinson’s within 10 years. Now, 3 years later, I have been diagnosed with Parkinson’s. None of my doctors show concern or offer any suggestions for the sleep disorder. It is frustrating and frightening for the patient and spouse. So far, I’ve only injured myself with my flailing, kicking and falling out of bed.

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