What It’s Like to Live with a Sleep-Eating Disorder

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Jill was in high school when she started eating in her sleep. Despite taking the food back to her bed to eat each night, she had no idea what she had done until the next morning.

“I would wake up with these containers or wrappers from a whole box of crackers or cookies on my bed or next to my bed,” said Jill, now 62, who lives an hour away from Minneapolis. Because of the stigma and misconception surrounding sleep-eating, CNN agreed not to use her last name.

“A lot of people think this condition is, ‘Oh, you get up, have a bite to eat, and then go back to bed.’ Well, it’s not. This is a whole different animal,” Jill said of her unconscious nighttime behaviors.

“I don’t just get up and have a bite of this or that,” she said. “I can eat a whole package of cookies, then get up and eat four bowls of cereal, then get up and eat a whole box of graham crackers. And it’s always junk food, never, ‘Oh, I’m going to eat an apple.'”

Jill says that nights of poor nutrition and disrupted sleep can take their toll over time.

“I can’t even tell you how sick you feel,” she said. “You’ve been up countless times during the night, so you’re not rested, and you’ve eaten a ton of junk. Then you wake up and boom, you have to function the rest of the day. And that’s what I’ve done for years and years and years.”

Jill has sleep-related eating disorder, also called sleep-eating — a condition in which part of the brain is awake while the rest is asleep. Sleep-eating is a parasomnia, an abnormal or unusual behavior during sleep, similar to sleepwalking, sleep talking, sleep terrors, and sleep sex, or sexsomnia.

“Of all the parasomnias, sleep-related eating disorders have the greatest impact on people’s lives,” said Dr. Carlos Schenck, professor and senior psychiatrist at the University of Minnesota Hennepin County Medical Center.

“These people are eating out of control almost every night. They’re gaining weight. They’re miserable in the morning. It affects their whole life and it’s just horrible,” said Schenck, who specializes in treating parasomnias.

Although it may seem like people are acting out their dreams, parasomnias most often occur during the slowest, deepest stage of sleep, called delta sleep, he said.

“Something triggers an alarm in the central nervous system and your body becomes activated while your cognition is deep asleep,” he said.

In the mixed state of sleep and wakefulness that is sleep eating, the ancient brain takes over and seeks out foods that can satisfy the body’s need for satisfaction. Ultra-processed foods such as candy, cookies, pies, doughnuts, chips and crackers are the preferred choices during sleep eating, Schenck said.

“You have no control, you have no limitations,” he said. “People can consume a food that they are allergic to and have an allergic reaction. It’s rare, but it happens.

“And because they choose foods like peanut butter, chocolate, leftover banana cream pie or pasta – fattening, overly processed comfort foods – they may develop or worsen their diabetes or hypertension.”

Of all the parasomnias, sleep-eating is the most difficult to treat, with a success rate of only two-thirds, Schenck says. By comparison, treatment success is more than 75% for patients with sexsomnia, sleepwalking or nightmares.

“You can have someone who has been sleepwalking for years, but once they start eating at night, eating quickly becomes the only sleepwalking behavior,” Schenck said.

“There is something irresistible about eating food at night and sleepwalking. Who wants to move the furniture or just wander around the house when you can go eat?”

‘The doctors didn’t understand it’

Married in her early 20s, Jill would stay in bed for dinner with her new husband. Fortunately, she said, he was a deep sleeper.

“He would wake up in the morning in a bed full of crumbs and paper and say, ‘What’s wrong with you?’ He thought I was crazy,” she said. “He didn’t understand. And I didn’t understand, because I didn’t do it on purpose.”

Jill’s health suffered. Not only did she gain weight from all the extra calories, but the quality of her diet also deteriorated dramatically.

“I eat healthy, but I often felt so sick all day long, the last thing I wanted to do was eat, even healthy food,” Jill said. “Who would want to do that when you’re eating the equivalent of six Thanksgiving dinners in a row every night?”

Jill was embarrassed by her behavior and kept her sleep habits to herself for decades. It wasn’t until her son developed a disorder called idiopathic hypersomnolence, in which he slept for 18 hours or more at a time, that she began asking doctors about her own condition. Unfortunately, she said, broaching the subject didn’t go well.

“A lot of the doctors I talked to had no idea what was wrong with me, or they just didn’t get it. One doctor said, ‘Well, maybe you should eat a piece of bread before you go to bed.’ Oh yeah, that’ll fix it,” Jill said dismissively.

“If you don’t have this disorder or live with it, you’re not going to fully understand it, but I really thought doctors would know more about it,” she added.

“And the problem was that I felt alone then, because I thought there was something wrong with me – because the doctors didn’t understand, it must be my fault.”

After years of disappointing doctor visits, Jill discovered Schenck’s treatment center in Minneapolis. For the first time, she underwent a sleep study in the lab, which revealed that she had restless legs syndrome, a neurological disorder that causes unpleasant sensations in the legs, along with an irresistible urge to move them. The sensations often begin in the evening and can last all night.

“It’s now become restless body syndrome,” Jill said. “It’s a shaking, almost like a bug crawling inside me that travels through my whole body.”

To relieve the constant muscle twitching at night before bed, Jill sometimes walks around the house flailing her arms and legs in a desperate attempt to make the sensation stop.

“You just get so miserable, so uncomfortable, that you’re flailing your body parts around, trying to tire them out a little bit,” she said. “There are nights when the shaking is just, oh, I can’t even tell you, I’m in tears, it’s so bad.”

Restless legs syndrome is one of four possible causes of sleep-eating, Schenck says.

“You can develop sleep eating from sleepwalking, from sleep apnea, from certain insomnia medications, or like Jill, from restless leg syndrome,” he said. “Those can all be the ultimate causes of sleep-related eating disorders, and that’s why we call it in medicine a final common pathway disorder. All roads lead to Rome, basically.”

However, Jill was sleep-eating long before restless leg syndrome became a major complaint. Research has shown that sleep-eating can occur first, Schenck said.

“We studied a group of patients who were sleep-related eating in the lab, and they had periodic limb movements along with the sleep-eating,” he said. “Then, lo and behold, five or 10 years later they developed classic restless legs syndrome. So sleep-related eating may be the first indicator of future restless legs syndrome.”

Illustration by Yukari Schrickel/CNN

Diet cultures and restrictive eating can contribute to lethargic eating, according to Dr. Carlos Schenck, senior psychiatrist at Hennepin County Medical Center in Minneapolis.

Other risk factors for sleep eating include a family history of eating disorders of any kind and the person’s gender, Schenck said.

“Sleep-related eating is 70% female dominant, while sexsomnia, for example, is 80% male dominant,” he said. “It’s possible that the emphasis that society places on dieting contributes to this; if someone is restricting their eating during the day and not getting enough calories, that could lead to more sleep-related eating.”

Jill’s mother was always on a diet, she recalls, and she wonders if that factor may have contributed to her behavior. “You know, the big thing was to be thin, and I wonder if I noticed that as a child. But I really don’t know,” Jill said.

Families try to help their loved ones by waking them while they are sleeping and eating, Schenck said. Sometimes, though, that can backfire.

“The person may become irritated and angry and say, ‘Don’t stop me from doing what I need to do.’ I once treated a single mother with three teenage children who paid her three children to sleep in sleeping bags in the kitchen,” he said.

“When she would come into the kitchen at night, her kids would say, ‘Stop, you paid us to make you stop!’ Guess what happened? She got so frustrated that she paid her kids more money to go back to their own bed and let her eat in peace.”

It’s been more than 20 years since Jill first visited Schenck’s clinic. Today, her restless legs syndrome and sleep-related eating disorder are largely under control, she said, thanks to a cocktail of three medications prescribed by Schenck.

“I take them early in the evening because it takes a while for the medication to kick in. Even Dr. Schenck was surprised that I take them so early so my system is settled by bedtime.

“The meds work 95 percent of the time, but then I have the occasional bad day and night,” she said. “When they don’t work, it’s just exhausting.”

She does her best to keep overly processed trigger foods out of her home, a desire that is sometimes sabotaged by the treats she has on hand when her grandchildren come to visit. But life is vastly better than it was before she started treatment.

“I’m very, very, very grateful that I finally found someone who understands what I’m going through,” Jill said. “I know there are thousands of people out there who are suffering just like I am, and my heart goes out to them. It’s a tough journey to go through.”

Her advice to others? Be your own best advocate, she said. Do your research and read up on the disorder so you know what questions to ask your doctor. And most of all, she said, ask for a sleep study to figure out what’s triggering the behavior.

“Don’t let doctors put you down, brush you off, 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 opinion, even a third opinion if you think you need one. Just don’t give up.”

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