Mayo Clinic Connect
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?
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?
Liked by JK, Alumna Mentor
Hello @pamela51, I would like to add my welcome to Connect along with @lisalucier and other members. I've read about REM sleep disorder but have no experience with it. @pcolunio mentioned REM sleep disorder in another discussion and may have some thoughts or suggestions for you. I did find some good sites with information that may be helpful.
Medical News Today – What is REM sleep behavior disorder (RBD)? — https://www.medicalnewstoday.com/articles/247730.php
National Sleep Foundation – https://www.sleepfoundation.org/articles/rem-sleep-behavior-disorder
American Academy of Sleep Education – REM Sleep Behavior Disorder – Overview & Facts:
UpToDate – Rapid eye movement sleep behavior disorder
Hi, @pamela51– how are you doing? How are things going with your husband's RBD? What treatment has he had thus far for this condition?
Liked by John, Volunteer Mentor, JK, Alumna Mentor
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.
Liked by johnhans, JK, Alumna Mentor, Lisa Lucier
@pamela51 I have a friend who has similar symptoms as the RBD but it is not every night. Did your husband have the symptoms every night?
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At this point, I couldn't even answer that question. We sleep at opposite ends of the hallway, with doors closed. However, when we do sleep in the same room, he dreams, and thrashes several times each night, although, not always loudly. He has always been a restless sleeper. (We have been married 48 years).
Liked by johnhans, JK, Alumna Mentor
@pamela51 thank you for your answer.
Hi, @pamela51 – you mentioned that your husband, who is diagnosed with REM sleep behavior disorder, will be having more testing. What other testing will he be undergoing?
You also said you feel some symptoms other than the disruptive sleep behavior — occasional hand tremors and going "blank" when he is speaking — are related to the RBD, yet your neurologist doesn't think they're related and believes your husband's RBD is controlled. Have you considered the option of a second opinion?
I'm a retired pastor, but I volunteer at church, leading worship from the piano. I had a sleep study done in 2002, which confirmed sleep disorder. I learned after the fact that I had the disorder as a child, but was never diagnosed. Until a year ago I slept with a CPAP machine, but switched to a Bipap machine. We have a good sleep center not far from home. Am I correct to assume that your husband has had a sleep study?
I have similar concerns about getting totally lost in the middle of a song, and I have to read my sermons. I hope the people understand why I all of a sudden fumble for a few measures until I can get back on track. I often forget which verse we're on, and what key I'm playing in.
My wife was ready to send me to the guest room because of my snoring, and even more because I acted out some violent dreams. The snoring stopped when I started using the CPAP machine, but the violence only stopped as a secondary effect of a medication I take – Clonazepam. It's an anti-anxiety medication, but I don't kick or punch in my sleep anymore.
Has your husband received any treatment yet? I hope he does soon. Sleep disorders are behind a lot of health problems, as you already know. Have you learned anything new in the past month?
I see a neurologist because I have peripheral polyneuropathy, but we have never discussed a possible connection between the neuropathy and sleep apnea. Maybe it's something I should add to my list of things to ask about at my next appointment.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, thankful, bernese53
My husband was first diagnosed with sleep apnea, and prescribed a CPAP. We were perplexed, because he had never been a snorer. When he finally went to a sleep specialist, and neurologist, he was told to use the CPAP as doorstop, because he did not have sleep apnea. He also takes Clonazepam, plus 5 melatonin, everynight. This keeps him from getting out of bed, but not from thrashing around, and yelling, during REM sleep. It is interesting that you have some of the symptoms he is experiencing, with losing your place. We have wondered if this isn't a side effect of the medication. I have encouraged him to get on this website. I think it would help him to connect with other people.
Liked by Teresa, Volunteer Mentor, Jim, Volunteer Mentor, Lisa Lucier
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
@lorena1egas I have read that taking over 3mg can cause nightmares. I use melatonin but never more than 3mg. How much are you taking?
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
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?
Liked by Teresa, Volunteer Mentor, Erika, Connect Moderator
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?
Liked by Teresa, Volunteer Mentor, thankful, Erika, Connect Moderator
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