‘It must be my fault’: Living with a devastating sleep disorder
“I would wake up with these containers or wrappers from an entire box of crackers or cookies on my bed or by the side of my bed,” said Jill, now 62, who lives an hour away from Minneapolis. Due to stigma and misunderstanding about sleep eating, CNN agreed not to use her last name.
“A lot of people think this condition is, ‘Oh, you get up and you have a snack and then you go back to bed.’ Well, that’s not what this is. This is a whole other animal,” Jill said of her unconscious nocturnal behaviors.
“I don’t just get up once and take a bite of this or that,” she said. “I can eat a whole package of cookies, then get up again and have four bowls of cereal, then get up again and have an entire box of graham crackers. And it is always junky junk food, never, ‘Oh, I’m going to have an apple.’”
Over time, nights of poor nutrition and dysfunctional sleep can take a toll, Jill said.
“I can’t even tell you how sick you feel,” she said. “You’ve gotten up countless times during the night, so you’re not rested, and you’ve consumed enormous amounts of garbage food. Then you wake up and boom, you have to function the rest of the day. And that’s what I did for years and years and years.”
Jill is living with sleep-related eating disorder, also known as sleep eating — an arousal condition in which part of the brain wakes while the rest sleeps. 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 disorder has the worst impact on people’s lives,” said Dr. Carlos Schenck, a professor and senior staff psychiatrist at the Hennepin County Medical Center at the University of Minnesota.
“These people have disinhibited eating almost every night. They gain weight. They feel miserable in the morning. It affects their whole life and is just horrendous,” said Schenck, who specializes in treating parasomnias.
While it may seem as if 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 is activated while your cognition is deeply asleep,” he said.
No control or restraint
In the mixed state of sleep and wakefulness that is sleep eating, the ancient brain takes over, searching out foods that might satisfy the body’s need for gratification. Ultraprocessed foods such as candy, cookies, cakes, doughnuts, chips and crackers are preferred choices during sleep eating, Schenck said.
“You don’t have any control, you don’t have any restraint,” he said. “People can consume foods they’re allergic to and then 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 can develop or aggravate their diabetes or hypertension.”
Of all the parasomnias, sleep eating is the most challenging to treat, with a success rate of only two-thirds, Schenck said. In comparison, treatment success is more than 75% for patients with sexsomnia, sleepwalking or night terrors.
“You can have someone who’s been a sleepwalker for many years, but once they start eating during the night, before long, eating becomes the only sleepwalking behavior,” Schenck said.
“There’s something irresistible about consuming food during the night and sleepwalking — who wants to rearrange 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 continued to eat in bed at night alongside her new husband. Thankfully, she said, he was a heavy sleeper.
“He would wake up in the morning to a bed full of crumbs and wrappers and say, ‘What is wrong with you?’ He thought I was crazy,” she said. “He didn’t understand. And I didn’t understand because I wasn’t doing it on purpose.”
Jill’s health suffered. Not only did she gain weight from all the extra calories, but the quality of her diet dropped dramatically.
“I’m a healthy eater, but I often felt so sick throughout the day, the last thing I wanted was food, even healthy food,” Jill said. “Who would when you ate the equivalent of six Thanksgiving dinners back-to-back every night?”
Embarrassed by her behavior, Jill kept her sleep habits to herself for decades. It wasn’t until her son developed a disorder called idiopathic hypersomnolence, in which he would sleep for 18 or more hours at a time, that she began asking doctors about her own condition. Unfortunately, she said, broaching the topic didn’t go well.
“Many doctors I spoke to had no idea what was wrong with me, or they just didn’t get it. One doctor said, ‘Well, maybe have a piece of bread before you go to bed.’ Oh, right, that’s sure to solve it,” Jill said disdainfully.
“If you don’t have this disorder or aren’t living with it, you’re not going to have a full understanding, but I really thought that doctors would know more,” she added.
“And the problem was then I felt alone, believing something was wrong with me — because the doctors didn’t understand it, it must be my fault.”
Causes of sleep eating
After years of disappointing doctor visits, Jill discovered Schenck’s treatment center in Minneapolis. For the first time, she underwent a lab sleep study, which showed 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 evenings and can last throughout the night.
“It’s now become restless body syndrome,” Jill said. “It’s a twitching, almost like a bug is crawling inside that travels through my whole body.”
To ease the constant twitching during the evenings before sleep, Jill may walk around the house, flailing her arms and legs in a desperate bid to stop the sensation.
“You just become so miserable, so uncomfortable, that you’re swinging your body parts, kind of trying to tire them out,” she said. “There are some nights that the twitching is just, oh, I can’t even tell you, I’m in tears it’s so bad.”
Restless legs syndrome is one of four potential causes of sleep eating, Schenck said.
“You can develop sleep eating from sleepwalking, from sleep apnea, from certain insomnia medications, or like Jill, from restless legs syndrome,” he said. “All those can be the ultimate causes of sleep-related eating disorder, and that’s why in medicine, we call that a final common pathway disorder. All roads lead to Rome basically.”
Jill, however, was sleep eating long before restless legs syndrome became a key complaint. Research has shown sleep eating may occur first, Schenck said.
“We studied a group of sleep-related eating patients 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 can be the first indicator of future restless legs syndrome.”
Other risk factors for sleep eating include a family history of eating disorders of any kind as well as the person’s sex, Schenck said.
“Sleep-related eating is like 70% female predominant, while sexsomnia, for example, is 80% male predominant,” he said. “It’s possible that society’s emphasis on dieting may contribute; if someone restricts their eating during the daytime and doesn’t get enough calories, that may drive more sleep-related eating.”
Jill’s mother was always on a diet, she recalls, and wonders if that factor might have contributed to her behavior. “You know, the big thing was you had to be thin, and I wonder if as a kid I was picking up on it. But I really don’t know,” Jill said.
Families may try to help their loved ones by waking them while they are sleep eating, Schenck said. At times, however, doing so can backfire.
“The person may get irritable 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 paid her three children to sleep in sleeping bags in the kitchen,” he said.
“When she would come into the kitchen during the night, her children would say, ‘Stop, you paid us to have you stop!’ Guess what happened? She got so frustrated she paid her children more money to go back to their own beds and let her eat in peace.”
‘Just don’t give up’
It has been more than 20 years since Jill first visited Schenck’s clinic. Today, her restless legs syndrome and sleep-related eating disorder are mostly under control, she said, thanks to a cocktail of three medications Schenck prescribed.
“I take them early at night because it takes awhile for the meds to work — even Dr. Schenck was surprised I take them as early as I do to get my system to calm down by bedtime.
“The medications work 95% of the time, but then I will 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 at times sabotaged by the treats she has on hand when her grandchildren visit. But life is enormously better than before she began treatment.
“I’m very, very, very grateful that I finally found someone who understands what I am going through,” Jill said. “I know there are thousands of people out there suffering just like me, and my heart goes out to them. It is a tough journey to go through.”
Her advice to others? Be your own best advocate, she said. Do research and read what you can about the disorder so you know the right questions to ask the doctor. And above all, she said, request a prescription for a sleep study to find out what is triggering the behavior.
“Don’t let doctors put you down, blow you off or make you feel bad,” she said. “One doctor might not want to do a sleep study, so find another doctor that will.
“Just keep fighting until you get the right doctor. Get a second opinion, even a third opinion if you think you need to. Just don’t give up.”
Jill's nocturnal behavior, driven by her sleep-related eating disorder, often involves consuming ultraprocessed foods like cookies, candy, and chips, which can negatively impact her health and lead to weight gain and health issues such as diabetes or hypertension.
Despite the stigma and misunderstanding surrounding sleep eating, research has shown that this condition, being a final common pathway disorder, can have various causes such as sleep apnea, certain insomnia medications, or neurological disorders like restless legs syndrome, which Jill was later diagnosed with.
