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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Hello, would like to know about people who use melatonin for rem sleep disorder or other sleep disorders and have vivid dreams while using it. How do they manage the melatonin in order to not have this awfull secondary effect. Thanks My name is Lorena

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@lorena1egas

Hello, would like to know about people who use melatonin for rem sleep disorder or other sleep disorders and have vivid dreams while using it. How do they manage the melatonin in order to not have this awfull secondary effect. Thanks My name is Lorena

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@lorena1egas I have read that taking over 3mg can cause nightmares. I use melatonin but never more than 3mg. How much are you taking?
JK

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@contentandwell

@lorena1egas I have read that taking over 3mg can cause nightmares. I use melatonin but never more than 3mg. How much are you taking?
JK

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Hi I am not using. I am afraid of using it then everytime Ive tried by my own to take it I have experienced terrible vivid dreams. Usually when my estrogen replacement fluctuates i have nightmares but thats on control with taking an oral dosage. I am sure the doctors at Mayo prefer melatonin instead of clonazepam for rem sleep but I am worry that I will spend 2 months with vivid dreams till my body get used to the melatonin. Have you or someone here experienced the same while on melatonin and how do you manage to control those nasty symptoms as vivid dreams that are big sleep disturbances too

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My husband has all the symptoms and went for a sleep study last night. However, he doesn't have these wild dreams every night and I wonder what the sleep study can find if he had a quiet night. Can they still diagnosis REM sleep disorder if he didn't have any physical dream during the sleep study?

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@terrysue

My husband has all the symptoms and went for a sleep study last night. However, he doesn't have these wild dreams every night and I wonder what the sleep study can find if he had a quiet night. Can they still diagnosis REM sleep disorder if he didn't have any physical dream during the sleep study?

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Hello @terrysue, Welcome to Mayo Clinic Connect. I've had a sleep study done that diagnosed my obstructive sleep apnea and I know they have a lot of leads hooked up to you and cameras watching you sleep – all to monitor breathing, heart, movement, and more but I'm not sure of the specifics. Mayo Clinic has some information on how it's diagnosed and treated here: https://www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/diagnosis-treatment/drc-20352925

That would be a great question for your husband to ask the sleep medicine doctor when he meets with the doctor after the sleep study and they go over the results. I've always found it helpful to have someone with me when there may be questions so that I don't forget to ask. Are you able to attend the meeting with your husband and take notes?

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@terrysue

My husband has all the symptoms and went for a sleep study last night. However, he doesn't have these wild dreams every night and I wonder what the sleep study can find if he had a quiet night. Can they still diagnosis REM sleep disorder if he didn't have any physical dream during the sleep study?

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The way it was explained to us was: In normal REM sleep, a person's muscles are paralyzed, so they don't act out their dreams. In REM sleep disorder, even if it doesn't appear outwardly that they are dreaming, if their muscles are twitching, they shouldn't be. Your husband probably had some electrodes attached to muscles to determine if the muscles were paralyzed or not.

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@pamela51

The way it was explained to us was: In normal REM sleep, a person's muscles are paralyzed, so they don't act out their dreams. In REM sleep disorder, even if it doesn't appear outwardly that they are dreaming, if their muscles are twitching, they shouldn't be. Your husband probably had some electrodes attached to muscles to determine if the muscles were paralyzed or not.

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@pamela51 Welcome back to Mayo Clinic Connect.

May I ask if there was any treatment offered for REM sleep disorder?

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Clonazepam, plus 5 melatonin, every night.

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About 8 or so years ago my husband started having vivid dreams where he would thrash around, flinging his arm across my rib cage, punching out, hitting my head, etc. He wouldn't remember doing that but would remember the dreams (usually he was being attacked). He got so concerned about being attacked that he brought a butcher knife into the bedroom, keeping it in the nightstand next to him. I quickly removed it! Then he brought in a baseball bat and tried keeping it within arms reach. That managed to 'slip' under the bed lol. At times through the years I've had to sleep on the couch or guest bedroom. He has also been on Clonazepam for all those years. I'm guessing that might have kept the RBD under control for the most part.
At the same time the RBD started showing up (slightly before) he started having problem with mechanical things. He would forget how to do things with his computer, how to work the remote, etc. His doctors never said anything about the RBD or other problems. He did have health problems they put him on medications for – but also didn't address a few others that came to light later and apparently had been lurking in the background for awhile.
On his RBD diagnoses it wasn't confirmed until the other day when I left a note for the doctor regarding his problems with sleep and acting out dreams (they had taken him off the Clonazepam). He is now back on it and last night was restful.
He also has been diagnosed with dementia and tests are pending on determining stage/type/etc. From some of his symptoms, including the RBD, my layperson's guess is it could be related to Lewys – partly because he tends to have good days and bad days more than people with AD tend to have. Somedays I would swear he doesn't have anything wrong with him – then the next day he is re-watching a movie he saw that morning with no idea he had ever seen it before.

Decades ago the doctor sent him for a sleep test (he has had problems sleeping all his life – most likely due to an abusive father). He could not sleep and got so frustrated with the test that he quite halfway through the night and refused to be ever tested again.

At times he has tried melatonin but it never seemed to help him. He loves his Clonazepam but all of his doctors have been reluctant to have him take it (originally it was prescribed by a doctor in Mexico who was concerned about his developing anger issues).

Has anyone had the REM/RBD disorder linked to dementia?

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My husband's symptoms started at age 50. He is now 71. Klonopin and Melatonin (lots of it) keeps him from getting out of bed at night, although he still thrashes around, and talks in his sleep.
Our own research , and his neurologist, told us RBD patients frequently develop Parkinson's Disease. He was diagnosed one year ago with PD. Looking back, we think there were other signs of PD, starting several years before he was diagnosed. He is doing quite well with his medications.

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