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Jill started eating in her sleep in middle school, when she would bring food to bed every night and devour it, never realizing what she’d done until the next morning.
“I would wake up and there would be containers or wrappers from cracker or cookie boxes on my bed or by my bedside,” said Jill, 62, who lives an hour outside Minneapolis and agreed that CNN should not use her last name because of stigma and misunderstandings about the eating and sleeping arrangement.
“A lot of people think this is, ‘I get up, I have a snack, then I go back to bed,’ but that’s not it. It’s a whole different story,” Jill said of the involuntary nighttime behaviour.
“It’s not like I just get up and eat this or that,” she says. “I might eat a whole box of cookies, get up and eat four bowls of cereal, get up and eat a whole box of graham crackers. It’s always junk food. I’m never like, ‘Oh, I’ll have an apple.'”
Over time, poor nutrition and troubled nights of sleep can have a negative impact, Jill said.
“I can’t even describe how bad it makes me feel,” she said. “Waking up multiple times in the middle of the night, not resting, eating loads of junk food, then having to wake up and function for the rest of the day. And that’s what I’ve been doing for years and years.”
Jill has sleep-related eating disorder, also known as sleep eating disorder, which is a state of wakefulness in which part of the brain is awake while the rest of the brain is asleep. Sleep eating is a parasomnia, which means that you behave in an unusual or abnormal way while you sleep, similar to sleepwalking. Talking in your sleepsleep terrors, sleep sex, or sexsomnia.
“Of all sleep disorders, sleep-related eating disorders have the greatest impact on people’s lives,” said Dr. Carlos Schenk, professor and senior psychiatrist at the University of Minnesota Hennepin County Medical Center.
“These people have uncontrollable appetite almost every night, they gain weight, they feel miserable in the morning, and it affects their whole life and it’s really awful,” said Schenk, who specializes in treating sleep disorders.
Although it may seem like you’re acting out a dream, the sleep disorder most often occurs during the slowest, deepest stage of sleep, called delta sleep, he said.
“Something sets off an alarm in the central nervous system, and the body becomes activated while cognitive functions are in deep sleep,” he said.
During the sleep-feeding state, a mix of sleep and wakefulness, your ancient brain takes control and seeks out foods that will satisfy your body’s need for satisfaction. Ultra-Processed Foods Candy, cookies, cake, doughnuts, chips and crackers are some of the favorite sleep foods, according to Schenk.
“There’s no control, no inhibitions,” he says. “If you eat a food you’re allergic to, you can have an allergic reaction. It’s rare, but it does happen.”
“And they choose fattening, overly processed comfort foods like peanut butter, chocolate, leftover banana cream pie and pasta, which can lead to or exacerbate diabetes and high blood pressure.”
Of all parasomnias, sleep eating disorder is the most difficult to treat, with only a two-thirds success rate, Schenck said. By contrast, treatment success rates for people with sexsomnia, sleepwalking and night terrors are more than 75 percent.
“If someone has been sleepwalking for many years and then starts eating at night, eating may eventually become the only sleepwalking behavior,” Schenk says.
“There’s something irresistible about sleepwalking through the night eating food. Who wants to rearrange the furniture and walk around the house when you can go eat?”
“The doctors couldn’t figure it out.”
Jill, who married in her early 20s, continued to eat her nights in bed with her new husband, who she says was, thankfully, a good sleeper.
“He’d wake up in the morning with a bed full of crumbs and wrappers and say, ‘What’s wrong?’ and he thought I was crazy,” she said. “He didn’t understand, and I didn’t understand either because I was doing it on purpose.”
Jill’s health deteriorated. Not only did she gain weight from the extra calories she consumed, but the quality of her diet also declined dramatically.
“Even though I eat healthy, I often felt sick throughout the day and the last thing I wanted to eat was food, even healthy food,” Jill says. “Who could do that if they were eating the equivalent of six Thanksgiving dinners every night in a row?”
Ashamed of her behavior, Jill kept her sleep habits a secret for decades. It wasn’t until her son developed a condition called idiopathic hypersomnia, which caused him to sleep more than 18 hours a day, that she began talking to doctors about his condition. Unfortunately, Jill says, broaching the topic didn’t work.
“Most of the doctors I spoke to had no idea or didn’t understand what was wrong with me. One said, ‘Why don’t you eat a piece of bread before you go to bed? Oh yeah, that’ll fix it,” Jill said disdainfully.
“If you don’t have this disorder or live with it, you can’t fully understand it, but I really thought a doctor would know more,” she added.
“And the problem was, because the doctors didn’t understand, I thought there must be something wrong with me and I felt alone.
After years of disappointing doctor visits, Jill found Schenck Treatment Center in Minneapolis. She took her first sleep study and discovered she had restless legs syndrome, a neurological disorder that causes an uncomfortable sensation in the legs and an irresistible urge to move them. The sensations often start in the evening and can last all night.
“Now I have restless body syndrome,” Jill says. “I have these spasmodic sensations all over my body, like bugs are crawling all over me.”
To soothe the constant nighttime cramps before bed, Jill sometimes paces the house flailing her arms and legs in a desperate attempt to stop the sensations.
“I feel so miserable, so uncomfortable, I throw parts of my body around to try and tire myself out,” she said. “Some nights the cramps are so bad I can’t even describe them.”
According to Schenk, restless legs syndrome is one of four potential causes of sleep-related eating disorders.
“Sleepwalking can lead to sleep eating disorder. Sleep apnea“It could be certain insomnia medications or, like Jill’s, restless legs syndrome,” he says. “All of these could be the underlying causes of sleep-related eating disorder, which is why in medicine we call it the Final Common Pathway Disorder. Basically, all roads lead to Rome.”
But Jill was eating while she slept long before restless legs syndrome became a major symptom. Research suggests Schenck said eating while asleep may be the first thing that happens.
“We’ve studied a group of patients in the lab who have sleep-related eating disorder, and they have periodic limb movements that coincide with eating while they sleep,” he said, “and lo and behold, five or 10 years later they go on to develop classic restless legs syndrome. So sleep-related eating disorder could be the first sign of future restless legs syndrome.”
Illustration: Yukari Schreickel/CNN
Dr. Carlos Schenk, a senior psychiatrist at Hennepin County Medical Center in Minneapolis, said diet culture and restrictive eating can lead to overeating while asleep.
Schenk said other risk factors for sleep eating include a person’s gender as well as any family history of eating disorders.
“Sleep-related eating is about 70 percent more common in women, while sex-sleep is 80 percent more common in men,” he said. “Our diet-focused society may be a contributing factor. Restricting food during the day and not getting enough calories may increase sleep-related eating.”
Jill’s mother was always on diets, she recalls, and she wonders if that influenced her behavior. “You know, the need to be thin was a big thing, and I guess I picked up on that as a kid, but I don’t really know,” Jill says.
Family members may try to help their loved ones by waking them up when they’re sleeping and eating, Schenk said, but sometimes doing so can be counterproductive.
“Patients may get frustrated and angry and say, ‘Don’t stop me from doing what I have to do.’ I once treated a single mother with three teenage kids who was paying for her three kids to sleep in sleeping bags in her kitchen,” he said.
“When she comes into the kitchen in the middle of the night, her kids say, ‘Stop it, we paid you to stop.’ And guess what? She gets so annoyed that she pays them more so she can go back to her bed and eat in peace.”
More than 20 years have passed since Jill first visited Schenck, and today, she says, her restless legs syndrome and sleep-related eating disorder are largely under control thanks to the three medications Schenck prescribed.
“I take the medication early in the evening because it takes a while for it to start working. Dr. Schenk was surprised that I was taking it so early to help calm my body down before bedtime.”
“The medication works 95 percent of the time, but I still have bad days and nights,” she said. “When it doesn’t work, I’m just tired.”
She does her best to keep overly processed, triggering foods out of her home—sometimes thwarted by the treats she packs for her grandchildren when they come over—but her life is much better than it was before she started treatment.
“I’m so incredibly grateful to have finally found someone who understands what I’m going through,” Jill said. “I know there are thousands of people out there who are going through the same thing as me and my heart goes out to them. This is a tough journey to get through.”
Her advice to others? Be your own biggest advocate, she says. Find out and read all you can about the disorder so you know the right questions to ask your doctor. And above all, ask for a prescription for a sleep study to find out what’s driving this behavior, she says.
“Don’t let your doctor put you down, ignore you or make you feel bad,” she said. “One doctor may not want to do a sleep study, so find another doctor who will.”
“Just keep fighting until you find the right doctor. Get a second or third opinion if you think you need it. Just don’t give up.”
