Acting out while asleep: a strange sleep disorder

During the day, Lawrence Neumann was a mild mannered man, considerate, kind and loving to his wife of many years, Bonnie.

In the middle of the night, as they tried to sleep, he became someone else, screaming obscenities, grunting, kicking, punching Bonnie in the arm, violently hurling himself out of bed.

For 16 years, this couple from Streator, Ill., more than 80 miles southwest of Chicago, had no idea what was happening or why night after night. The local doctors they consulted were at a loss to explain the strange symptoms. "Nobody seemed to know anything about it," said Lawrence, 73, now retired from a concrete block business.

Relief came at long last nearly two years ago in the form of a diagnosis from a neurologist at Northwestern University's Feinberg School of Medicine. Lawrence had a little known condition, REM sleep behavior disorder, in which people act out their dreams, unconsciously, during sleep. That diagnosis was a turning point, since the condition is easily treatable.

Nine out of 10 people who suffer the disorder are men. The vast majority are age 50 or older, although new research is finding a higher prevalence of the disorder in younger adults as sleep problems gain more attention, according to Dr. Bradley Boeve, a professor of neurology at the Mayo Clinic and a leading expert on this condition.

"Several patients we've seen, their spouse will describe first encountering this on their wedding night," he said.

Estimates suggest one in every 200 adults has the strange affliction, caused by a dysfunction in a part of the brain that suppresses muscle activity while people are in REM sleep, a dream-filled phase of slumber.

The prevalence of REM sleep behavior disorder might be much higher in seniors. Notably, 9 percent of 2,300 adults age 70 to 90 surveyed in Olmstead County, Minn., reported symptoms consistent with the diagnosis. "Even if only half actually have it, that's still 4 to 5 percent -- and that makes it pretty common," Boeve said.

A growing body of research suggests the condition is a precursor to Parkinson's disease and Lewy body dementia in up to 25 to 50 percent of patients. Why this is so is not yet clear, but neurons in adjacent areas of the lower brain stem appear to be implicated, according to Dr. Carlos Schenck, one of the physicians who first described REM sleep behavior disorder.

Scientists are monitoring patients closely and hoping that someday drugs will become available to prevent neurodegenerative disorders from developing after the first signs of REM sleep behavior disorder appear.

Asked about patients, Schenck described men who have jumped through windows while asleep, strangled their bed partners, smashed into dressers, knocked themselves unconscious, and given their wives black eyes. Typically, their experiences are eerily similar: men dream they're being chased or hounded by large insects, animals or threatening people and have to defend themselves, Schenck said. Almost inevitably, the dreams are colored by violence and aggression.

One of Schenck's patients is Cal Pope, 85, of Circle Pines, Minn., who had seen 400 men go down on a ship in the South Pacific in World War II. "I was sure he was reliving that," said his wife, Rowena, 81, who would watch Cal kick the wall fiercely and threaten to crush people's heads in the middle of the night. It took nine years for Pope to get a proper diagnosis and treatment.

One night, Rowena watched in horror as her husband got down on all fours, roaring like a lion. "I was chasing other lions around," Cal remembered, adding that he was frequently "completely worn out in the morning" after nightly episodes.

To be evaluated, patients need an expert sleep study, with electrodes placed on their arms and legs to track movements during slumber, said Dr. Alon Avidan, an associate professor of neurology at Ronald Reagan UCLA Medical Center. A videotape will capture the patient's activities and other conditions, such as sleep apnea, that can cause similar symptoms. Also, alcohol, coffee, and certain anti-depressants can serve as triggers for REM sleep behavior episodes.

Symptoms are relieved 90 percent of the time by clonazepam (also known as Klonopin), a medication commonly used to treat anxiety, panic attacks and seizure disorders. It helps patients sleep more soundly, wake up less often, and have fewer episodes when they do. A large number of patients also are helped by melatonin, which is being studied at Northwestern as a treatment for REM sleep behavior disorder.

In San Diego County, Calif., John Chadwick used to strap himself into bed with a seatbelt and put on leather handcuffs so he wouldn't hurt his wife, Susan, in the middle of the night. Once, Susan said, "he kicked me out of bed so hard I landed on my head." Another time, she remembered, "he bit me so hard on my wrist that the teeth impressions last for two days."

"I was living a nightmare," said John, who is now being treated successfully with melatonin at UCLA.

For Lawrence and Bonnie Neumann, night became a time of danger, suffused with the potential for injury. Once, after leaping out of bed in the midst of an episode, Lawrence hit his head on a nightstand, opening a large gash. Another time, he threw himself out of bed head first, smashing his forehead on the floor boards and causing a concussion.

It was routine for Lawrence to start kicking his wife, dreaming a bear was sneaking up on him. "The mood was one of defense against attack," Lawrence remembered. "If she tried to touch me, I'd come after her."

Bonnie put pads around the bedroom furniture so Lawrence couldn't hurt himself; other couples take sharp objects away, put mattresses to the floor, arrange foam barriers between them, or move their bedrooms to the ground floor so they don't leap out of second story windows.

"It's very important to take safety precautions, kind of like baby-proofing the room," said Dr. Phyllis Zee, associate director of Northwestern University's Center for Sleep & Circadian Biology.

After extensive neuropsychiatric tests and three separate sleep studies, Lawrence was finally diagnosed by Northwestern doctors with REM sleep behavior disorder in 2008. They gave the older man clonazepam, which worked like a charm, while also treating a mild case of sleep apnea, which can contribute to REM behavior disorder episodes.

"It was the first time in more than 16 years that I could say I got a good night's sleep," Lawrence said. "I sleep really well now."
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SLEEP DISORDERS COME IN MANY VARIETIES

People act out their dreams, eat, get violent, and assume new identities during sleep.

Parasomnias are disorders that disrupt sleep, either physically or emotionally. Some are well known; others aren't. Examples include:

Sleepwalking: A person appears awake, with eyes open, but is actually asleep. Occurs most frequently early in the night.

Bedwetting: Some people can't maintain control over their bladders during sleep from infancy onwards. Others gain control but relapse later in life.

Night terrors: People are jolted from slumber, terrified, confused and unable to communicate. They may thrash about or get out of bed during episodes. Occurs during deep sleep.

Sleep paralysis: A sensation of being unable to move body or limbs when falling asleep or waking up. May be caused by narcolepsy (excessive sleepiness during the day), sleep deprivation or irregular sleep schedules.

Confusional arousals: People may be agitated, aggressive and unable to waken fully, talk clearly or respond to questions. Typically occurs when people are aroused from deep sleep early in the night.

Sleep hallucinations: Someone may believe they see, hear, touch or sense something that isn't actually there as he is falling asleep or waking up. Often associated with a feeling of fear or dread.

REM sleep behavior disorder: Occurs when someone acts out a dream during REM sleep. Dreams tend to be frightening and often violent.

Sleep dissociative disorder: People may forget who they are, assume another identity or become violent while falling asleep or upon awakening. Most common in people who have suffered some type of abuse.

Sleep eating disorder: People raid the refrigerator, sometimes light up the stove and eat while asleep. Can accompany sleepwalking.

Sexsomnia: Abnormal sexual behaviors during sleep, including fondling, masturbation, sexual assault and hyperarousal.

SOURCES: Dr. Carlos Schenck, Minnesota Regional Sleep Disorders Center; Cleveland Clinic; American Academy of Sleep Medicine; Stanford University; WebMD

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