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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md123 | @md123 | Feb 1, 2023

In reply to @kalliope56 "Just curious...why is Melatonin too risky?" + (show)

Morning! They are known to create vivid dreams and sometimes nightmares. He does not have a problem falling asleep and no doctor we have seen recommends accelerating his REM, which I think Melatonin does.

kalliope56 | @kalliope56 | Feb 1, 2023

In reply to @md123 "Morning! They are known to create vivid dreams and sometimes nightmares. He does not have a..." + (show)

I can only speak to my own and my husband’s experiences.

He and I take 5 mg per night. Yes, we do have dreams that we can vividly recall but nothing frightening. Our dreams are more “interesting” rather than frightening. We enjoy recollecting them and analyzing them together.

Before Melatonin, my husband was having night terrors fairly often about being chased by animals or about fending off intruders. Sometimes, this would result in my being hit. I actually moved into a guest bedroom for awhile.

He prefers the interesting dreams to the night terrors and I have resumed sleeping with him. For us, it’s a “win-win.” He sleeps more peacefully, I get to sleep with him, and I get to observe him and better ensure that if he does have an episode, he won’t fall out of bed. I still hug a pillow though to create a soft barrier just in case he hits or punches.

Another benefit is that he hardly naps during the day anymore because he is sleeping better at night, He used to “nap” 3-4 hrs in the afternoon. Now it’s an occasional 30-60 minute nap.

He still experiences weird body movements most nights usually 3-4 hrs into sleep but they don’t last as long as they used to.

We figured that the worst case scenario would be that Melatonin wouldn’t work or it would stop working, in which case he would stop taking it. So far...so good.

Perhaps this is a bandaid approach to a bigger undiagnosed problem, but until I can convince him to see a doctor for a true diagnosis, it will have to do.

I prefer to see him taking OTC Melatonin than prescription meds that may cause daytime loopiness.

Also, with Melatonin, he can stop taking it on a dime...it’s not addictive and requires no weaning off as there would be with a prescription drug.

jillebeanwright | @jillebeanwright | Feb 7, 2023

In reply to @franny66 "My husband has been using a C-Pap machine for 7 years which he needs due to..." + (show)

Hello
I have sleep apnea and RBD.
I recommend the dental device for him verses the cpap.
If I was still on my cpap it probably would have been damaged with all the movements I have with this disorder. Much more comfortable and free feeling. It will also protect his teeth if he is grinding down during an episode.
Kind regards

john22 | @john22 | Feb 17, 2023

In reply to @billchitwood "About 8 or so years ago my husband started having vivid dreams where he would thrash..." + (show)

@billchitwood

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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I am a 54 year old male who was diagnosed with RBD, mild cognitive impairment and daytime fatigue. I made an appointment at the sleep center because I was so tired during the day. I had been using a CPAP machine for several years prior to diagnosis and had two previous sleep studies that were negative for RBD. Two key questions that my sleep doctor asked during my appointment were: “have you ever fallen out of bed? Have you ever had dreams about being attacked by animals and acted out your dreams? I answered yes to both and he then recommended I come in for a sleep study. A week after my study, my doctor called me and diagnosed me with REM Behavior Disorder. He also told me I was at an extremely high risk for developing Parkinson’s disease or Lewy Body Dementia. I was referred to neurology and met with a doctor who specialized in the field of neuropsychology and had a great understanding of this disorder. He recommended I take melatonin before bed which helped but I was having vivid dreams after After about 8 months, I was still having problems with moving and jerking at night so he prescribed me Clonazepam which helped with the movement and vivid dreams. The side effect of this drug is that I feel more tired after getting up in the morning and kind of cloudy during the day at times. I decided to cut my pill in half at night to see if I felt less fatigued during the day. I can say it’s helped but there’s always side effects to any medication. I used to be a pretty articulate person but have been having trouble finding the words when speaking at times and forgetting more things. Often times midway through a conversation, I forget where I’m at. Some days are very good and some days are rather difficult. I haven’t fallen out of bed since 2018 but I now sleep in a separate bed from my wife as I don’t want to risk harming her. RBD is an extremely serious disorder and if you have symptoms like falling out of bed and acting out your dreams, I would suggest seeing a sleep specialist and having a sleep study performed as it’s the “gold standard” for diagnosis of RBD. I would also suggest an MRI of the brain. This is a difficult disease for family and friends to handle and understand. With no real treatments for preventing the disease or slowing it down, it can be very frustrating and difficult to handle. It’s hard to extract a lot of positivity from some of the studies that have been performed. There’s not a lot known about how you contract this disease. The fact that around 94% of people that develop RBD will go on to develop LBD or PD can leave you feeling quite hopeless. I had a great doctor who really understood this disease but unfortunately moved away and now I have to find another which has been rather difficult. I was extremely lucky to have neurologist who specialized in neuropsychology. I think it’s important to get one’s affairs in order when it comes to this disease. Make sure you protect your assets and you’re planning for assisted living or nursing home care as you will probably need it sooner than you think. Hopefully, more support groups will be available for this specific condition as it’s rather limited at the moment. I believe this condition is rather under diagnosed and there’s a lot of people walking around who have it but aren’t aware. The actor Robin Williams was diagnosed with Lewy Body Dementia after an autopsy was performed on him. Allen Alda was also diagnosed with Parkinson’s Disease after recently seeing his doctor. "I had dreamed somebody was attacking me, and in the dream I threw a sack of potatoes at him," he told AARP in May 2020. "In reality, I threw a pillow at my wife." This encouraged Alda to go to a neurologist for a brain scan and to not take no for an answer. I hope this site as well as others can help spread the word about this disease. By sharing our experiences, maybe we can ease the burden of the suffering and misunderstandings of this disease.

Julie Chitwood | @billchitwood | Feb 17, 2023

Decades ago the family doctor order a sleep study for Bill. Like so many times with suggested tests or therapies, he showed up, stayed for a few hours and demanded to go home. So that was that. Mayo did determine last spring that he suffered from RBD. What was the scary part is he always slept with a butcher knife in the bedside drawer and a heavy bat by the bed. I somehow was always able to side track him on buying a gun. They did end up giving him medication which helped. He was 89 when he pasted in December of 2022. His last year was especially terrible. And he refused anything that might have made it easier for him. It was heartbreaking watching.

john22 | @john22 | Feb 18, 2023

I would be curious to know if anyone of you that have been diagnosed with RBD were exposed to pesticides over your life time?Pesticide and Herbicide exposure along with traumatic life events or head injuries has been linked to this condition in some studies.

jillebeanwright | @jillebeanwright | Feb 19, 2023

In reply to @john22 "I would be curious to know if anyone of you that have been diagnosed with RBD..." + (show)

Hello
I had a head injury in childhood. I also have PTSD.

Amanda Roe | @amandajro | Feb 19, 2023

In reply to @john22 "I am a 54 year old male who was diagnosed with RBD, mild cognitive impairment and..." + (show)

@john22

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Hello and welcome, @john22. What a beautifully written account of your journey to share with the members who are in this discussion and who will come across it in the future. You make a lot of really great points that shows how self-reflective you have been.

What do you find to be most challenging at the moment for you that others could provide support to you for?

john22 | @john22 | Feb 20, 2023

In reply to @amandajro "Hello and welcome, @john22. What a beautifully written account of your journey to share with the..." + (show)

Right now the most challenging thing for me is my irritability and fatigue. I don’t mean to be short or grumpy with loved ones but it’s really hard to control. This disease is so complex in on many levels. It can turn you into a person that people don’t really want to be around. It can make you selfish at times and difficult to see how your selfishness affects other people.

divine01 | @divine01 | Jan 21 11:46pm

In reply to @kalliope56 "My husband is having some sleep issues and refuses to go to the doctor for a..." + (show)

@kalliope56

My husband is having some sleep issues and refuses to go to the doctor for a proper diagnosis. His issues started about 5 years ago when he started having unusual movements in his sleep. In the beginning, it was rhythmic clenching and unclenching of his hands on and off throughout the night. This progressed to jerking movements of his entire body and even falling out of bed a few times. Over the past couple of years, he has had nightmares usually having to do with fighting off intruders, dogs, or wild animals. While body movements happen nightly, the bad dreams perhaps happen 3-5 times per month. A few times, he hit me in his sleep believing that I was the intruder. I have researched these symptoms on the internet and they seem to be common symptoms in people with Parkinson's. He rarely snores and he has long periods of quiet throughout the night so I suspect when body movements and nightmares that he acts out occur, he is in a REM sleep stage. I had stopped sleeping with him out of fear of being injured and only returned to our bed when he agreed to try Melatonin. I had shared with him that I had researched his behaviors and they seemed to point to RBD and that some people with RBD had found Melatonin helpful. I actually viewed a webinar on Michael J Fox's Parkinson's website and the doctor in the webinar spoke about Melatonin and how it is considered a safe supplement to use. Melatonin has toned down his episodes but has not eliminated them. I don't know what to do as he refuses to seek help, Honestly, he doesn't think anything is wrong and thinks it's comical as he typically is unaware of his own behavior. I also do not feel comfortable telling him what I think he has--RBD and perhaps even Parkinson's and/or dementia related--Lewy Body. Has anyone else experienced body movements and nightmares where they act out their dreams? Have you been diagnosed? What medications have been effective for you?

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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!