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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@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

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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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@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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@ralphy47

The first place to start is with a sleep study. Melatonin has been working well for my father as an aide to his sleep. After you determine when the movements are occurring, REM or NonREM, you can get the best treatment. Movement during your REM stage can be a very serious issue.

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Please tell me more why movement during REM stage is a serious issue ?
I had SD and used to jump out of bed sometimes falling
I take 5 mg Melatonin and it has stopped However I do talk aloud in my sleep and my husband says I have a tremor
This is usually in the morning after 5 or more hours sleep

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@looplu79

Please tell me more why movement during REM stage is a serious issue ?
I had SD and used to jump out of bed sometimes falling
I take 5 mg Melatonin and it has stopped However I do talk aloud in my sleep and my husband says I have a tremor
This is usually in the morning after 5 or more hours sleep

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If it's occurring during the REM stage, it can be caused by medications, stress, untreated sleep disorders, to name a few. It can also be caused by forms of dementia and other brain disorders. The only way to even determine if it is REM sleep disorder is by having a sleep study. Its more likely something less serious. The issue is our brain is designed to paralyze our bodies when we sleep so that we don't hurt ourselves while dreaming.

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@jaybee51

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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Hello to all. I am alarmed reading all these posts that do not definitively connect RBD with likely progression to Parkinson's or Lewy Body Dementia. It is established science that RBD is "prodromal" (early undiagnosed symptom) for these diseases. Please visit the Michael J. Fox Foundation website for more info, or just Google for research. There can be many years between RBD symptoms and further development. If you have RBD, you can be part of important research that is trying to figure out how to stop it from developing further. RBD is formally diagnosed with a sleep study, and there is a new skin biopsy test (SYN SKIN) that can show if you have the folded alpha-synuclein protein that is present with PD or LBD. No doctor can or should just say you don't or won't get them, on the basis of the fact that you don't have any symptoms yet. Other non-motor early signs are extremely low blood pressure on standing, constipation, and loss of sense of smell. Exercise is the only thing that has been proven to slow the progression, which again can take from 5 to 20 years. I have RBD and I control it by sleeping in a stretchy constrictive bag. It actually controls the dreams, they are not violent, though I often run with my feet in the bag, and move around and talk. But I'm able to stay in the bed with my partner without harming him or myself. I got the bag on Etsy by looking up "adult swaddle." Taking the drugs (melatonin/Klonopin) didn't agree with me but in the bag I sleep well. Good luck to everybody.

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@sharonrbd

Hello to all. I am alarmed reading all these posts that do not definitively connect RBD with likely progression to Parkinson's or Lewy Body Dementia. It is established science that RBD is "prodromal" (early undiagnosed symptom) for these diseases. Please visit the Michael J. Fox Foundation website for more info, or just Google for research. There can be many years between RBD symptoms and further development. If you have RBD, you can be part of important research that is trying to figure out how to stop it from developing further. RBD is formally diagnosed with a sleep study, and there is a new skin biopsy test (SYN SKIN) that can show if you have the folded alpha-synuclein protein that is present with PD or LBD. No doctor can or should just say you don't or won't get them, on the basis of the fact that you don't have any symptoms yet. Other non-motor early signs are extremely low blood pressure on standing, constipation, and loss of sense of smell. Exercise is the only thing that has been proven to slow the progression, which again can take from 5 to 20 years. I have RBD and I control it by sleeping in a stretchy constrictive bag. It actually controls the dreams, they are not violent, though I often run with my feet in the bag, and move around and talk. But I'm able to stay in the bed with my partner without harming him or myself. I got the bag on Etsy by looking up "adult swaddle." Taking the drugs (melatonin/Klonopin) didn't agree with me but in the bag I sleep well. Good luck to everybody.

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@sharonrbd you are correct. I have dementia. The diagnosis right now is mild Alzheimer’s and/or Lewy-Body Dementia.
I am having several symptoms of LB. However, my diagnosis will be a toss up forever.

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@marlow2

My husband has been exhibiting Rem sleep disorder for about 5 years. Recently, after slugging me in the middle of the night, he agreed to have a sleep study. He first was seen by Dr. Robert Hooper at Mayo Clinic. Dr. Hooper published a book that we are currently reading called Sleep and It's Disorders What you should know. It goes into these violent outbursts with some people and how to treat it. He will go over his results at Mayo in 2 weeks with a sleep specialists and a respiratory therapist. I was just diagnosed with Central and Obstructive Apnea. He has seen the improvement in my sleep and I do believe that this motivated him to finally get help. For the past 2 days, he has been putting tape on his mouth when he goes to sleep. For the first time in several years, he was not snoring throughout the night and had less movements. Dr. Hooper did mention that he might benefit from using Melatonin. Will follow up with everyone when they go over his results.

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Can I ask why the use of the tape? Do they think the snorning was making the RBD worse? My husband has it, going on 2 years, and was prescribed Chlonopan at .5 mg and he is still having massive body movements. Very curious about the tape.
Thanks

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@divine01

Hello there, My husband started having the REM sleep disorder right after we were married. I believe he was about 45 to 50 at the time. He used to punch me and kick me in the bed. He also would get up out of bed and fall out of bed too all in his sleep. I urged him to go to his doctor here at the Mayo clinic and after a sleep study they diagnosed him with the REM sleep disorder. There is a medicine for it but its addictive and it works somewhat but not the best.I had to leave the bedroom which he did not like and to this day is not happy about.He is 65 now and I will be 69 in a few months. He is now shuffling along and he falls backward easily. He has tremors in his hand and feet. He literally has been in the bed for 5 years and has a poor outlook on life. He said his doctor told him he was fine. He did not have parkinsons. I hate tosay it but I know he does. I have to do everything for him. I mean everything. He no longer can take out the garbage. He cannot help me with anything around the house and the only enjoyment he gets is that his little pomeranian adores him and ssleeps with him. Do I call his doctor??? What do I do??? I keep praying about it!

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Divine01,
I know it has been quite some time since you posted but I was very curious as to how your husband is doing now. Was he finally able to get help? My husband was told yesterday that he has RBD, which I have known for 1.5 years. His loser of a doctor said he had restless legs. My husband's illness has went from 10 mph to 60 mph after a serious fall over a year ago. I am so lost. We just started a new medication and I am hoping that this will help. Hope your husband is doing well. Thanks for sharing your story.

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Hi Lisa
We are in a similar situation, my husband was told by the Doctor it was restless leg syndrome but was finally diagnosed with RBD in October of last year. It has been 6 months of adjusting medication but as of early this month he is finally where he needs to be. It has been a nightmare from pre diagnosis until now but at last we can start to have some sense of normality.
I hope your experience ends up as positive.

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