Sleep Walker and Dream Actor - Until Klonopin Stopped My RBD

by Cam
(St Louis, MO, USA)

I am a 41 year old female. I have always been a sleep walker, sleep talker, and sleep thrasher. My cousins always thought it was fun to spend the night because I would talk to them from my dreams, and occasionally they would find me "looking for the tools" in the closet or stumbling around the house mumbling. My mom found me getting into the unlocked car in the driveway one night. I can still remember the dream, I was at a bridge and in order to cross, I needed a slip of paper that was really physically located in the car. So my sleeping, dreaming body walked out of my bedroom, down the stairs and out into the yard. I was getting ready to climb over the fence to get to the car, when my mom woke me up and asked why I was outside. I told her I needed "the paper to get across." My mom said, "go back to bed, the paper will be delivered in the morning."

These episodes continued throughout my college and adult life. Mind you, I have always lived with someone. My parents or siblings would find me in parts of the house or in the yard, and just put me back to bed. I lived with my grandmother as a young teacher out of college. She was great at helping me back to bed, because her husband, my paternal grandfather, was a sleep walker and was a notorious dream actor.

I got married and my husband was very tolerant with my thrashing about and talking while dreaming. He also got very good at calling me back to bed when I would wander about acting out what I was dreaming about. I am a creative person and I am very visual. My dreams are almost always pleasant and very vivid. I do tend to have more problem solving dreams (looking for lost people and items, figuring sequences, and finding clues) during bouts of stress--good and bad stress. When real life is challenging, I have dreams that compell me to act--even if I am sleeping. I am also a very active, high energy person. I was diagnosed with adult ADHD, and it seems as if I am always on the go...

I have never been violent during a sleep acting episode. I usually do not have violent dreams, just very active ones. I do not hit my bed partner. And I have been very lucky that with all of the activities I have performed while sleeping, I have never injured myself. My first year of teaching, I dreamt there was a snow day called and I had to start to snow chain. I called the first person on the list, and luckily, he was awake and knew not a flake had fallen. He teased me incessantly after that.

It was only when my husband started a new job where he worked overnights that I knew I needed to seek help for my sleep walking. Life was more stressful than usual, I was alone at night. I do not like being alone. There were two instances that could have been dangerous that caused me to seek treatment. The first was during a very busy time as a school teacher. I was in charge of the creative aspects of a medieval dinner theatre that my gifted students were preparing for. One night before the performance I went to bed stressed and later than usual. I was out of clean pyjamas, so I slept in the buff. I was dreaming about 300 kids coming to my house to make medieval hats. As I was dreaming of letting throngs of students into my home, I woke up to find my self naked, (yet I found a couch cushion to cover my torso) holding my screen door open to "let the kids in!"

The second incident was the one that concerned me the most. In my real physical life, I had arranged for some house hold items to be picked up for donation. I left several notes explaining where the heavy furniture items where located in the back of the house. I was rather stressed about getting the items protected from the overnight rain and leaving detailed notes in case I was not home during the pickup.

That evening I went to bed worked up and bothered. I woke up to find myself leaning out of the back kitchen window. My entire upper half was outside the open window and I was tiptoeing in socked feet, stretching my body and waving my arms trying to "get the truck drivers' attention."

I did not know what was causing these episodes (other than stress.) I had no idea that there was a a name for this condition. I did know about sleep labs, though. For a few years I slept with a C-PAP machine for sleep apnea. But I lost weight and did not need it any longer. Besides, I would rip the mask off half of the nights.

I went to Washington University Neuerolgy's Sleep Medicine Center where after a very intense and in depth look at my sleep habits, a neurological work up, and two sleep studies, I was diagnosed with REM Behavior Disorder, or RBD. I learned that the sleep paralysis (atonia) that should occur when the human body enters REM sleep, does not occur with me. I was instructed to keep a clean bedroom, no glass drink ware by the bed, no guns in the house and install strong locks on the windows and doors. These safetly measures would keep me from getting hurt if I did sleep walk. I was also prescribed Klonopin (clonazepam) to take each night. The medication has kept me from having any sleep walking/dream acting episodes for 4 years. I only had one small episode last week when I fell asleep before I took my medication. I was dreaming about crawling through a hole in a boat so I could see the paddle wheel. I woke up to find my self trying to crawl into my bookcase/headboard.

I am thankful the medication helps me so well. I am hopeful that this powerful drug will continue to provide me with the safe sleep I need.

I do worry about the RBD link with Parkinson's disease and Lewy Body disorder. My sleep walking grandfather passed away from complications with Parkinson's. I tend to be a worrier and I worry about my RBD and my vivid dreaming. I have been helped by a sleep psychologist who has taught me to use Progressive Muscle Realxation techniques as well as sleep visualization exercises before sleep. These techniques help most nights.

I would like to know about RBD support groups/communities both physical and online.