My husband has REM sleep behavior disorder (RBD)

@tngirl103
Our journey started the same. We went through some stuff that caused my husband to become VERY anxious and he wanted to sleep holding my hand. First his hand would start jerking a bit and then later he would grab and pull my hand so hard I thought he was going to break it. Once when I woke him up he said he was dreaming that someone was trying to take something from him. Eventually this also became thrashing, punching, kicking, yelling and swearing. He has even thrown himself out of bed! This is so unlike my sweet gentle husband of 31 years. It's crazy. I have to keep pillows between us to protect myself.

@birdiejayne
Oh my! Strangely my husband’s behavior has lessened, but I don’t sleep well and I worry that our little dachshund that adores him and sleeps close to him may be injured. I’ve read of women who’ve opted to sleep in another bed. I think if that were my choice I’d insist on twin beds. I’d want to know if he hurt himself. If his behavior does escalate I want him to try melatonin or whatever a doctor would recommend. Many have commented that melatonin made a big difference. Beginning of September we saw a sleep NP (nurse practitioner) who said she advised a sleep study. We do live in a rural area, yet even despite my calling about it and him receiving a call, the study hasn’t been scheduled. I’m trusting that as my mama always said, “The Lord knows all about it.” For whatever reason the timing may not be right.
I’m curious-does your husband display loss of sense of smell or issues with constipation? Mine does. The latest studies show the combination of those three very likely indicates a serious prognosis.

Ugh. I have RBD and am absolutely terrified of potentially developing Parkinson's. I've seen first-hand the ravages of that awful disease because two close family members (neither of them blood-relatives) have had it.

I was finally diagnosed with RBD in 2022 at Mayo, after about 5 years of increasingly dramatic (and increasingly frequent) episodes of punching, kicking, and shouting in my sleep. I always woke up immediately after lashing out or shouting, and always vividly remembered the dream. It was always some version of me being chased or attacked, either by people or animals (or insects).

Then, it escalated to me jumping completely out of bed one night. I passed it off as an odd, isolated incident... but when it happened a second time a couple years later, I knew something was wrong, and told my doctor about it. She sent me to Mayo Sleep Medicine.

I did a sleep study, but I slept so little and so poorly (not uncommon in sleep studies) that I didn't show any RBD symptoms.

My diagnosis was based on the obvious evidence and symptoms--confirmed by my sleeping partner. They can diagnose RBD based only on those factors, though confirmation with a sleep study is preferable.

I told my sleep doctor all that I had read about the correlation between RBD and Parkinson's, and she agreed that sending me to Neurology would be prudent.

The neurologist put me through a battery of tests, but did not find any evidence of PD, but wants to continue to see and test me yearly.

Ever since getting the RBD diagnosis I've been worried, every day, about developing Parkinson's. It's such a horrible disease. I hyper-focus and over analyze every little tremor or moment of clumsiness or forgetfulness that I have. I even stare at myself in the mirror looking for signs of "facial masking" and whatnot.

Sometimes I wish I didn't know. I know it's good to be proactive, but this has shown me that knowing I have a very high likelihood of developing a disease I was already terrified of... well... I realize it sometimes might be better just not knowing certain things.

@azsingularity thank you for being honest about your fears!! My husband has RSD a hand tremor and anxiety. This freaks me out but he won't go to the Dr. His mom and (so far) all but 1 of his 5 aunts have had dementia (not lewy body that I know of). I think it scares him. He will be 65 next week. His 8 years older brother has no signs of dementia or parkinsons. Still, I feel better farwarned so we can be proactive. I spend alot of time worrying about this also. For me, calming music and a task that occupies my brain helps keep me from spiraling.

@tngirl103
He does have the loss of smell. He says its because of lasting effects of Covid that he had in Feb. 2020. I have my doubts about that now. No constipation that I am aware of. I also do NOT want to sleep in another room. After all these years I can't imagine sleeping in a separate bed. I was in the spare bedroom with the tv on both times he's launched himself out of bed, I heard it and rushed in. He was ok, thank goodness!! Your mother is right, only the Lord knows His timing. Sometimes it's so, so hard to trust in His will. That is one of my biggest issues. I'm such a worrier. My brain just can't stop going, going, going. Thanks ADHD! Yay. So, he used to take melatonin because he has a hard time staying asleep. It didn't really help. Maybe a dr could recomend a different dose. I just wish he'd go, ya know? We are lucky that our pets don't sleep on our bed when we're in it. Now that we're empty nesters our cat gets his own room. Lol!

@birdiejayne
My husband is so hardheaded! His back is killing him from which is too soft and he refuses to buy another one until he gets a number of bills paid off as he is close to retirement. Oh well, you can lead a horse to water, but. I’ve heard of people losing their sense of smell from Covid. I guess I’ve not heard whether it continued to remain gone or if it came back I don’t know. We have to google that to help him get to sleep. My father used to recite the names of the presidents the years they served and their vice president until he fell asleep! Ha ha ha! I don’t care that much about the president anymore and at 71 it is very hard for me to memorize things even to remember the names of people. My new husband knew that when he married me in January so he’s very patient with me but as a Christian, I know it’s not God’s will for me to be anxious and worry I have ADHD as well, and it is so hard for me to stop my brain from cycling round and round on the same thing. For sometime now, I have been wanting to memorize scripture that correlates with the alphabet to help me fall asleep or to think about when I’m tempted to be anxious. I came across a sample and I have almost managed to memorize it. I don’t worry about the chapter and verse. I I just memorize the words I’m going to try to include a photo for you. There ought to be all sorts of these out there I remember when my 43-year-old son was just for having a book like this and I still remember the first four verses from teaching him. (they weren’t the same as the first four verses on this example) I’m saying a prayer for you and that your husband would listen to reason

@birdiejayne I can definitely relate to your husband's hesitation. I'm sure it DOES scare him (I deal with this myself, constantly). However, with PD, early diagnosis and treatment are the keys to slowing progression.

Regarding melatonin dose, this is the instruction I was given by the Mayo sleep doctor to find the (possible) effective therapeutic dose:

First, you'll keep a nightly 'sleep journal' so you can tell when/if the Melatonin is beginning to work. Nothing fancy, just record whether there was any kind of RBD episode or not. It helps (but isn't 100% necessary) to first record 3-4 weeks of baseline data before Melatonin, so you have something to compare to.

Essentially, you're beginning with 3mg nightly, and increasing the dose by 3mg every 2 weeks until you see a reduction or elimination of RBD episodes. I believe 15mg was the "max" I was told to not go beyond. Here's how that works:

1. Begin with 3mg before bedtime and stay on that dose for 2 full weeks. Record # RBD incidents during this time.

2. If there's been no elimination of RBD episodes, or the # of incidents has at least reduced a bit, increase to 6mg and stay on that for 2 full weeks. Continue recording incidents.

3. Wash, rinse, repeat every 2 weeks... ioncreasing the dose by 3mg each time until you find your maximum effective dose. Again, don't go above 15mg.

4. It's important to give each dose-level a FULL 2 weeks to show effects, if any. It's slow-going, I know, but necessary as these things take time.

Honestly, though Melatonin is pretty safe. I'd still recommend consulting with a doctor before/while doing this.

In my case, I saw a reduction in RBD incidents after 2 full weeks of only 3mg. I increased to 6mg and my incidents reduced to almost zero. Now, I have only a few incidents per year and their intensity is greatly reduced (from punching and kicking to just gentle vocalizations and twitches). If this ever changes for the worse, I'll increase to 9mg.

I always write down/record my RBD episodes, otherwise it's difficult to have an objective idea of how frequent/bad they are.

@tngirl103
Oh my gosh!! I had never heard of this before! What an awesome way to learn and memorize scripture! Thank you!! I was unaware that I had ADHD until recently, when my daughter looked into it for herself and said, " mom! I'm pretty sure you have ADHD! Lol! I did some research myself and I'm telling you, I could be the poster child! I just wish I had known my daughter's problems were caused by this. So much makes sense now! (For both of us) I'm learning how to deal with things that trip me up and that just because starting things and then completing them is so hard it doesnt mean I'm lazy or stupid. I swear I can't remember anything from one moment to the next, especially bible verses! Other people do it, why can't I? Well now I know. I can't concentrate long enough for it to stick. And math?! In my head?! Lol! I could never remember the algebra problem solving equation so I could solve it on a test. I just felt stupid. We've come a long way in understanding the brain haven't we! It sounds like we both have wonderful husbands who love us. What a blessing!! Thank you again for the verse by alphabet trick!

@birdiejayne I forgot to mention in my long post: I was told melatonin may not work (or be right for) everyone with RBD. The sleep doc said they usually try melatonin first, and if it doesn't help there is a prescription medication they recommend instead... but I can't remember the name and don't want to speculate.

Interesting he doesn't usually wake himself up nor remember the dreams. I always wake myself up and always vividly remember what the dream was--especially the specific part that caused me to yell, punch, kick, etc.

Sometimes, it's more like a hallucination than a dream. In other words, my eyes are open and I can see familiar surroundings (bedroom, partner, dog, etc) but I'll "dream" that a spider drops from the ceiling into the bed, or something like that.

As soon as I jump out of the bed I'm fully awake and feeling pretty stupid... but the dog is excited and thinking he's gonna get a 2am walk 😛