You may not have heard of it but R.E.M. sleep disorder is most common in men who also have Parkinson’s disease, or Lewy body dementia.
When most of us sleep, our bodies enter a state of muscle paralysis.
People with R.E.M. sleep behavior disorder lose that, and are capable of acting out physical activity in their dreams, which can be violent.
Orvis “Rig” Rigsby and his wife Karen loved theater and travel.
Karen Rigsby
“He was a theater professor and I was a theater person, so for me it was really…there was an immediate connection and we had a similar sense of humor and it was just a lot of fun," says Karen Rigsby.
But just a few years ago, Rig started showing signs of dementia.
“He had an incident where he got very disoriented and lost in our backyard and that’s when we started looking for help from a neurologist,” says Karen.
At first, Doctor Ira Goodman thought Rig had Alzheimer’s disease.
“And actually, I initially referred him for a clinical trial for Alzheimer’s disease but right before he entered I changed my mind,” explains Dr. Goodman, who specializes in neurology.
Instead, Doctor Goodman diagnosed Rig with Lewy body dementia and R.E.M. sleep behavior disorder. The condition causes a person to act out violent dreams.
“There have been fractures, there’s been subdural hematomas, and as far as spouses or bed partners, there’s been reports of up to two-thirds of bed partners being injured during an episode,” says Dr. Goodman.
“Sometimes he would just start yelling or sometimes he would start punching around. Sometimes, it was like he flew off the bed," Karen Rigsby says.
Currently there is no cure. Rig wears a patch that helps ease the symptoms, but keeping a watchful eye is the best defense.
“If he’s having a bad night, I’ll still sleep in the bed with him and hold my hand on his shoulder," says Karen.
Doctor Goodman and Karen Rigsby say not to be afraid of getting evaluated if you notice any symptoms.
“I tell everybody, don’t waste time, don’t waste time, don’t wait, don’t wait, don’t wait. That’s all you can say," explains Karen.
A national phase three clinical trial is underway for a new drug called nelotanserin to treat the rem sleep behavior disorder.
Klonopin, an anti-anxiety drug, called clonazepan in the generic form, is most commonly prescribed, but it has side effects.
Another option, mentioned by Mayo Clinic, is to take a dietary supplement called melatonin.
By the way, Karen says her husband Orvis still loves theatre, movies, music and dance.
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RESEARCH SUMMARYMEDICAL BREAKTHROUGHS
TOPIC: REM SLEEP DISORDER
REPORT: MB #4280
BACKGROUND: Rapid Eye Movement (REM) Sleep Behavior Disorder or RBD, causes patients to physically act out dreams. These can often be extremely vivid and unpleasant, and will involve vocal sounds alongside often violent and sudden arm and or leg movements during REM sleep. Normally, a person in REM sleep doesn’t move. It occurs multiple times throughout the night, about 20 percent of a person’s sleep cycle. This is usually the time for dreaming, occurring in the second half of the night. Onset of RBD is often gradual and can worsen over time. It can be associated with other neurological conditions such as Parkinson’s disease, Lewy body dementia, or multiple system atrophy. It is not a psychiatric disorder. People with RBD do not normally have mental problems.
(Source: http://www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/home/ovc-20322407)
SYMPTOMS: RBD can be confused with night terrors and sleepwalking, but in these other disorders, the sleeper is usually confused upon walking up. He or she does not become rapidly alert, as they do in RBD. It is easy for a person with RBD to wake up, and recall clear, vivid details of the dream. Details usually match their unusual behavior, an RBD episode can include shouting, swearing, flailing, grabbing, punching, kicking, jumping and even leaping. It does not cause a person to be sleepy during the day, but it is often found alongside other sleep disorders that can cause daytime sleepiness. Examples include sleep apnea, periodic limb movement disorder, and narcolepsy.
(Source: http://www.sleepeducation.org/sleep-disorders-by-category/parasomnias/rem-sleep-behavior-disorder)
TREATMENT: Treatment for RBD may include physical safeguards and medications. Doctors may recommend changes to a patient’s sleeping environment, such as padding on the floor near the bed and removing dangerous objects from the room. Barriers may be placed on the sides of the bed, and furniture and clutter cleared away. People with RBD may want to protect their bedroom windows, and possibly sleep in a separate bed or room away from their bed partner until symptoms are controlled. Common medications used in treatment include melatonin and clonazepam better known as klonopin. Doctors may prescribe either, but clonazepam is the traditional choice. It may cause side effects such as daytime sleepiness, decreased balance and worsening of sleep apnea.
(Source: http://www.mayoclinic.org/diseases-conditions/rem-sleep-behavior-disorder/diagnosis-treatment/treatment/txc-20322439)
NEW TREATMENT: A national phase three clinical trial is underway for a new drug called nelotanserin to treat those with REM sleep behavior disorder. Nelotanserin is an investigational drug candidate that has the potential to be a once-daily, orally-administered, potent and highly selective inverse agonist of the 5HT2A receptor. The 5HT2A receptor has been linked to neuropsychiatric disturbances including visual hallucinations; a common occurrence in people living with Lewy body dementia. Axovant intends to develop nelotanserin to address multiple aspects of Lewy body dementia including RBD.
(Source: http://axovant.com/pipeline/nelotanserin/)
UPDATE ON NELOTANSERIN: It was recently put on FDA’s “fast track” due to clinical need in treating Lewy body dementia. Clinics nationwide are still enrolling patients with REM sleep behavior disorder into nelotanserin studies.
http://www.wndu.com/content/news/Treatment-in-testing-for-sleep-disorder-commonly-found-in-men-with-Parkinsons-or-LBD-433678233.html
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