“RBD can be very dangerous to the people who have it, as well as those who share a bed with them,” said Aleksandar Videnovic, MD, a neurologist, movement disorders and sleep medicine specialist at Northwestern Memorial Hospital and assistant professor of neurology at Northwestern University Feinberg School of Medicine. “A person who has RBD will act out the scenes that they are experiencing in their dreams. Examples could include jumping out the window during a dream about a house fire or physically attacking the person sleeping next to them if they dream about a violent altercation.”
During REM sleep, which is one phase of sleep, a temporary paralysis occurs which keeps a person from getting out of bed while dreaming. For people with RBD, this bodily inhibition does not occur, allowing the person to make vocalizations and physically act out their dreams. The disorder is predominantly observed in males in their 40s or 50s, but can affect anyone. While it is thought to impact less than one percent of the population, experts believe the true incidence of RBD is higher.
“RBD often goes undiagnosed because people don’t realize they have it and continue to live with it,” said Videnovic. “It’s not communicated well to physicians by patients and it is often caught by chance.”
Becker had no idea that she had RBD until the night she jumped out of bed. “Until this incident, I didn’t recognize that this was happening to me,” explained Becker, a 62 year old who lives near Champaign, Ill. “I had started sleeping in another room because of a combination of my husband’s snoring and because I was experiencing night sweats at the time, so we’re not sure if I had done anything similar before. When this happened, I went to my husband as I was holding my tooth and bleeding and said ‘I think I hurt myself.’ He took me to the hospital right away. I ended up needing surgery and it took a year of dental work to repair all the injuries to my teeth.”
Becker recovered from her physical injuries and then underwent a sleep study to better understand what was happening while she slept. “During the sleep study, they told me I ‘performed’ because I had another dream which caused me to yell out loud and I kicked the electrodes off my legs – I was probably running or something in my dream.”
After undergoing the study at her local sleep center, Becker traveled up to Chicago to meet with RBD researchers at Northwestern where she did another sleep study and participated in a research study to examine links between RBD and Parkinson’s disease.
“There’s a link between RBD and Parkinson’s,” said Videnovic. “People with RBD develop Parkinson’s at a higher rate than the general public, but it’s unclear why. Some believe that RBD is an early manifestation of Parkinson’s, but much more research is needed in this area.”
The RBD clinic is part of the subspecialty Sleep and Movement Disorders Program at Northwestern’s Parkinson’s Disease and Movement Disorders Center, so patients benefit from being seen by clinicians who share expertise in sleep and movement disorders. The clinic aims to assess and diagnose patients with RBD and then determine the best means of management for the sleep disorder. There is also an emphasis on research for RBD and training to for medical professionals to help them better understand how to recognize and treat it.
“Our clinic is a good place for people to come even if they begin treatment elsewhere because our research infrastructure gives them the opportunity to participate in clinical trials and experimental treatments they might not get at other institutions,” said Videnovic.
RBD is not curable, but it can be effectively managed with medications. One of the most successful treatments is clonazepam, an anti-anxiety medication. Research has also shown melatonin to be useful in treating RBD.
“Since RBD is not a commonly known disorder, a lot of people live with it without getting the help they need,” said Videnovic. “If you start noticing strange things in your sleep or wake up with injuries or exhausted, discuss your concerns with your doctor and seek specialized care.”
Becker has luckily not had any other serious incidents and her RBD does not appear to be linked to Parkinson’s. She is currently managing the sleep disorder with clonazepam. “It was challenge at first to manage and we kept messing with the dosage, but it seems to be working for me,” said Becker. “I would encourage anyone with weird symptoms and strange sleep habits or who feels un-rested in the morning to get checked out. RBD can be very dangerous, I know from experience.”
Northwestern Medicine is the shared vision that joins Northwestern Memorial HealthCare and Northwestern University Feinberg School of Medicine in a collaborative effort to transform medicine through quality healthcare, academic excellence and scientific discovery.
To make an appointment at Northwestern’s RBD clinic, call 312-926-0779.