Early last summer, bizarre and disturbing things began happening during the night in the Silver Spring home of Ed and Nancy Weber.
One evening Ed Weber got up from a nap on the sofa, polished off a half-gallon of chocolate chip ice cream, then dozed off again. He woke up an hour later and went looking for the ice cream, summoning his wife to the kitchen and insisting, to her astonishment, that someone else must have eaten it.
Days earlier Nancy Weber had discovered peanut butter smeared on the refrigerator door and blobs of grape jelly under their kitchen table.
But what scared her most was walking into the kitchen one morning after the ice cream episode and realizing that her husband of 42 years had turned on a gas burner in the middle of the night and gone back to bed.
"It felt like I was living in the Twilight Zone," she said, remembering her husband's vehement denials. "I absolutely believed Ed didn't remember what he was doing."
Ed Weber, 66, said he had no memory of the incidents. "I thought she was trying to gaslight me," he recalled. "I really didn't believe I'd done these things."
It took neurologist John W. Cochran, armed with the results of a battery of tests, to convince him otherwise.
Cochran, who directs the sleep lab at Inova Alexandria Hospital, told the couple that Ed Weber's strange behavior was the result of a little-known problem called nocturnal sleep-related eating disorder (NSRED), a hybrid condition that bears the characteristics of an eating disorder and a sleep problem.
First officially described in 1991, NSRED, which is often referred to as sleep eating, is listed in the International Classification of Sleep Disorders as a parasomnia, a category of arousal disorders that includes sleepwalking.
An estimated 5 to 10 percent of Americans sleepwalk, but there are no reliable estimates of how many people get up and eat in the middle of the night when they are neither hungry nor fully awake. The majority of sleep eaters, experts say, do not have a daytime eating disorder such as bulimia or binge eating, nor was their problem triggered by rigid dieting. Nearly three-quarters have a history of sleepwalking.
Some, Ed Weber among them, have narcolepsy, a rare condition characterized by abrupt, uncontrollable episodes of sleep. And while most sleep eaters are slightly overweight -- as are most American adults -- sleep eaters are no more likely to be obese than the general population.
The cause of the disorder remains a mystery, although recent studies have linked it to other medical problems including sleep apnea and restless legs syndrome as well as to certain medications, including sleeping pills. Some tests of physiological activity during sleep suggest the disorder might be primarily neurologic.
There is no diagnostic test for sleep eating, and little consensus on treatment other than that some medications are effective, while psychotherapy rarely is.
Nearly all sleep eaters show a preference for food high in carbohydrates and sugar that is sometimes consumed in a sloppy frenzy. (Doctors say they have never heard of anyone making a beeline for salad in the middle of the night.) And there's no explanation why some patients try to cook, while others concoct bizarre creations like salt sandwiches or buttered cigarettes.
The disorder isn't new, said neurologist Helene Emsellem, a neurologist who is medical director of a sleep disorders clinic in Chevy Chase. "What is new is that for the past 10 or 15 years, we've started paying more attention to everything going on with sleep."
Two years ago during a program on forms of sleepwalking, television talk show host Montel Williams revealed that he had gotten up every night to eat for several years, incidents he didn't remember but discovered the following morning.
Williams told viewers he had removed raw foods from his refrigerator because "I wake up in the morning and there's a pack of chicken and there's a bite missing out of it. . . . I can take a whole pound of ham or bologna . . . and then wake up in the morning and not realize that I had ate [sic] it and ask, 'Who ate my lunch meat?' "
Williams's gustatory amnesia sounds familiar to Mark W. Mahowald, a professor of neurology at the University of Minnesota. Some patients, said Mahowald, report a hazy recollection of their nighttime foraging. Others have no memory of it.
"There's a continuum of awareness," said Mahowald, medical director of the Minnesota Regional Sleep Disorders Center in Minneapolis. "People often look awake and appear to be awake but aren't really awake."
While sleep eating sounds incredible, Mahowald said, it shares many characteristics of other, more common actions people perform when not fully awake. These include turning off an alarm clock, going back to sleep and not remembering doing so or being awakened in the middle of the night by a phone call, carrying on a brief conversation, then having no memory of it in the morning.
Many sleep eaters realize what they have done, Mahowald said, after they wake up and find cereal boxes in their beds, frosting in their hair or debris strewn around their kitchen.
"It's quite disturbing for patients to think they have performed some complex behavior in their sleep and don't remember it," said Emsellem, former acting chairman of neurology at George Washington University School of Medicine, who has treated about two dozen sleep eaters. "It's also quite embarrassing, which is one reason patients don't even tell their doctors about it."
Carla Boynton, a 45-year-old Montessori teacher, struggled with the problem for nearly 25 years.
"One morning I woke up and looked in the mirror and thought my face was bleeding, and then I realized it was smeared with chocolate," recalled Boynton, who recently moved from Montgomery County to Delaware. "For years I thought I was just weak-willed. I had a lot of shame around it. I thought I was the only person who did this and I really, really wanted to stop."
After gaining 30 pounds over a year, Boynton said, she found that she'd started to use her toaster oven and a blender during these episodes. Worried she might start a fire, Boynton confided in a doctor, who referred her to Emsellem six months ago. Since she started taking clonazepam, a potent drug used to control seizures and anxiety, she said that the episodes have virtually stopped.
Another of Emsellem's patients, a 50-year-old former foreign service officer who continues to work for the State Department, reported that she felt intense feelings of shame.
"I cannot tell you the self-loathing I felt when I woke up every morning feeling sick to my stomach with an absolutely horrible taste in my mouth realizing I had done it again," she said the woman. (She refused to be identified for this article, citing concerns about how her colleagues at State might react.)
None of the people she told about her problem -- her psychiatrist, nutritionists, her internist -- was familiar with it, she added.
"Most of the people I see have had this problem for a minimum of 10 years and have been in therapy for years without success in changing this behavior," said psychiatrist John W. Winkelman, medical director of the Sleep Health Center at Brigham and Women's Hospital in Boston.
Patients sometimes resort to desperate selp-help measures, noted Winkelman, an associate professor at Harvard Medical School, who estimates that he has treated 100 sleep eaters. Some barricade themselves in their bedrooms, install alarms in their homes, lock food in the trunks of their cars or pay friends or relatives to guard their refrigerators.
Most sleep eaters find ways to subvert these strategies, doctors say, because the compulsion to eat is so powerful.
Sleep eaters typically have little difficulty falling asleep, said David Neubauer, associate director of the Sleep Disorder Center at Johns Hopkins Medical Institutions, but their rest is disturbed by repeated arousals.
Eating episodes tend to occur within 60 to 90 minutes after falling asleep, during the shift from deep sleep to a lighter stage, Neubauer said. "At this point they fall into this kind of limbo state," he noted.
Most sleep eating episodes last about 10 to 15 minutes, he added, and eating is usually the sole focus of activity. But experts don't know what causes the awakenings or the drive to eat.
"We don't know what the underlying physiology of the disorder is," said Harvard's Winkelman. Some scientists have suggested that levels of leptin, a hormone that regulates metabolism, and ghrelin, a hormone that triggers eating may be involved.
Neubauer and others note that sleep eating, like sleepwalking, may be familial. The former diplomat -- who ate in her sleep every night for 30 years -- said she learned only recently that her late mother had suffered with the same problem for decades.
"She told me it started to recede when she got into her seventies," the woman said of her mother. "I was kind of relieved to learn she'd done it, too, because then it seemed like maybe I'd inherited some kind of genetic link."
Friends or relatives who encounter sleep eaters describe their glassy-eyed look and mumbling speech and say most are intent on getting to the kitchen as quickly as possible.
"People can become quite irritable and sometimes belligerent if they're interrupted," Winkelman said.
Neubauer said that one of his patients broke the doorframe getting out of her bedroom; her mother had locked the door at her request.
For most, the behavior continues when they are away from home
"I got a huge knot in my head once from ramming into a door because I was in such a hurry," said the former diplomat. She said she routinely asked her husband to hide food they brought into their hotel room when they traveled. He told her he often awoke in the middle of the night to find her frantically searching for it.
Because there is no diagnostic test for sleep eating, experts who treat it say they usually rely on the results of a complete medical and psychiatric history as well as a sleep study and the results of a sleep log and food diary compiled by the patient.
Sometimes treatment is relatively simple, according to Emsellem. Some people who starved themselves during the day to compensate for their nightly episodes found that if they ate a balanced daytime diet the problem abated.
Minnesota's Mahowald said that in about 50 percent of cases, medications will reduce or eliminate sleep eating episodes, particularly if another medical problem such as apnea or narcolepsy is uncovered and treated. But in some cases, the problem proves to be more intractable and drugs don't work.
In these situations, said Hopkins's Neubauer, doctors sometimes experiment with behavioral strategies, with varying degrees of success.
One sleep eater who was afraid of snakes put a large rubber one on her kitchen table every night, which usually sent her straight back to bed. A patient of Neubauer's said she now eats cottage cheese and pineapple when she gets up rather than the high-calorie foods she used to gobble, and has lost 20 pounds in the past two years.Neubauer has on occasion suggested a novel form of aversive conditioning: telling patients to mail a small cash donation to a cause they passionately oppose the morning after an episode.
Ed and Nancy Weber appear to have found a successful treatment.
For the past six weeks Weber has been taking Provigil, a drug to regulate sleep that was prescribed by his neurologist. He said he feels better, the narcolepsy is under control and his sleep eating has stopped.
Nancy Weber said she believes the quality of her husband's formerly restless sleep also has improved. Now that she no longer worries that he might burn down their house, domestic tranquility has been restored.
"I'm just so relieved it's not happening anymore," she said.