My husband has REM sleep behavior disorder (RBD)

Someone asked earlier, about the earliest signs of PD. We think, that, perhaps there were two years of subtle symptoms, before the actual diagnosis. As the person listening from the congregation, (my husband is a pastor), I noticed how weak is voice was becoming. Occasionally, he lost his place, or , there were long pauses. Once, I took him to the ER, thinking he might be having a stroke, because of an episode where he was conscious, but not responsive. Nothing was found, and it was considered a possible TIA. Other symptoms became apparent later, such as, his gait began to change....leaning forward, starting to drag one foot. His sleep specialist/neurologist, who had been seeing him for many years for RBD, finally made the diagnosis of PD.

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?

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.

Hi, @pamela51 - welcome to Mayo Clinic Connect. I have no personal experience with REM sleep behavior disorder, but I have heard a neurologist talk about some of the behaviors prompted by this disorder.

Here is some Mayo Clinic information on RBD you may be interested in: https://www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/symptoms-causes/syc-20352920

I'd also like to introduce you to @hopeful33250 @jenniferhunter and @johnbishop.

How was this disorder first discovered in your husband?

I agree, and he won’t go to see a doctor because he is doctor averse and doesn’t think he has a problem. He gas been taking 5 mg of Melatonin nightly for about a month. The movements and nightmares have dramatically diminished to the extent that the past 5 nights he has had totally peaceful sleep, and I’ve been able to sleep too. Previously, sleep movements were like something you would expect to see in The Exorcist. I’m hoping to convince him to see a doctor...working on it but haven’t been successful yet. Another thing...he used to take long (3-4 hrs) afternoon naps. I’ve broken him out of this habit and his nightly sleep has improved. That might be totally unrelated to whatever the problem is, but everything different we are doing, I am keeping note of in a journal.

One night 2 years ago he shouted in his sleep and shook the bed in small tremor like movements. I Woke up

My husband has been using a C-Pap machine for 7 years which he needs due to sleep apnea. We thought these sleeping fits were because of the amount of air he gets through the machine. We made several adjustments but he seems to be having the sleep fits anyway. Anyone have any ideas? He did start to take melatonin yesterday. We hope it helps.

Hi friends, my 65 y/o husband has "night terrors". Has had them for decades. He can go months with no incident and then have several back-to-backs. For years we kept journals tracking foods, activities TV shows to see if there was a link. We found nothing. We saw a Psychiatrist to rule out PTSD or any underlying psychiatric conditions. My husband is a gentle, very calm man. He is 6'4 and was a football player who, even given his age, is basically all muscle. I mention this as it is scary sleeping with a thrasher. We have seen neurologists, most seem completely lost with any diagnosis. My bestie runs a sleep disorder clinic and her husband suffers from the same issues. She did not recommend as the episodes are far too intermittent, We discussed the drugs others have mentioned and neither of us felt comfortable as we do not take any pharms and hope to never have to. As a note, it is terrifying for the individual going through this. They feel they are being attacked and it is very real for them It is also terrifying for the partner sleeping next to them. Under no circumstances would my husband even consider bringing a weapon of any kind as one poster noted. I used to sleep with a flashlight under my pillow. Sudden light brings him right out of his terror. I also agreed to allow a night light in the bedroom. Something I really did not want but he is more important and I have learned to deal with it. We live in the mountains so it is colder here, and we keep the room very cold year-round. Melatonin is too risky for him as is any PM meds. I do worry about PD.