“Imagine going over to your new love interest’s house for an overnight visit,” Dave asks me, “and when you wake up in the morning, you’re mortified at what destruction you might have left in the kitchen.”
Dave is a middle-aged cultural worker living in Montreal and he is a sleep eater. In the simplest terms, a sleep eater is someone who rises in the middle of the night, in some state of sleep or near sleep and devours everything they can get their hands on. Sleep eaters are often unaware of what they’re doing, despite the fact that those who suffer from this glitch in the sleep-wake system can repeat their actions multiple times a week and even within the same night.
And, as is often the case with sleep eaters, Dave carries a lot of shame.
“How to explain that you’ve emptied a new jar of peanut butter, a half-loaf of bread and an entire carton of milk? And if you happen to be up when I’m emptying the pantry? Just try and stop me,” he says.
Sleep Eating Disorder, or Sleep Related Eating Disorder (SRED), is a type of parasomnia — an umbrella term for a group of disruptive sleep-movement disorders — that's relentless and notoriously difficult to treat. Compared to, say, sleep aggression or sleep-related sexual assault (both on the parasomnia scale), sleep eating sounds relatively harmless, something that would make for a zany plotline in a Kevin James comedy. But it’s no mere case of the munchies: SRED can change everything from a person's body size to their relationship with loved ones. And it is not, as it is often derided, related to bad eating habits or overeating, nor is it “gluttony.”
What is Sleep Eating?
Little is known about SRED and even less is known about how to cure it. The first case was discovered in 1955, but it wasn’t recognized as an actual disorder until nearly 40 years later. Sufferers were written off as uncontrollable gorgers, people unable to tame their own urges.
Even today, sleep eaters are presented with stigmatizing psychological diagnoses, or told that they are simply not eating properly. It’s due mainly to the tricky nature of the diagnosis: A full assessment of SRED can only be acquired with videopolysomnography-based sleep tests accompanied by psychiatric and neurological testing. Many family physicians are not equipped with enough information about it — or parasomnias in general — and thus misdiagnose SRED as a non-sleep related compulsion. But the disordered eating only happens when people are asleep, and is part of a collection of parasomnias that are triggered by hyper arousal of base instincts (eating, having sex, aggression) during sleep.
Dr. Carlos H. Schenck, a professor of psychiatry at the Minnesota Medical School and the Minnesota Regional Sleep Disorders Center, is a renowned specialist in parasomnias. He is part of the team that originally diagnosed SRED in 1991 and describes it, and related parasomnias, as a triggering of “our instinctual behaviours" that "emerge inappropriately” during sleep.
SRED, says Schenck, is the inappropriate consumption of food — or inedible and even toxic substances — during the sleep period, and often emerges during adolescence or early adulthood in sleepwalkers.
Those who suffer from the disorder will seek out food wherever they can find it, but are not known to ingest food replacements, such as, say, toothpaste, or household objects. The disease is not related to Pica — an eating disorder marked by the desire to eat non-nutritional substances like dirt or paper — although some sufferers do combine food with inedible-but-food-associated objects, such as cigarettes.
SRED patients are wily in their sleep-like state and can find food even when it is hidden from them or locked up in refrigerators. They often injure themselves while gaining access to food or preparing meals. And the mess to which they wake — piles of food wrappers and empty containers — only heightens the anxiety the disorder causes. As one patient told me, his kitchen looks like a gang of raccoons broke in and raided the cupboards.
“What is fascinating is that once eating becomes part of the sleepwalking repertoire, it quickly becomes the only sleepwalking behavior,” notes Dr. Schenck. “Why rearrange the furniture, or put on multiple layers of clothing, when you could be eating lots of comfort food instead?”
Contrary to popular belief, SRED is not, Dr. Schenck says, a hunger-driven behavior. “Most SRED patients do not have daytime eating disorders, such as bulimia nervosa or anorexia nervosa,” he says.
Rather, it is a compulsion to eat, to consume. And he’s adamant that a better understanding of the disease is key. “It is a neurophysiological disorder of sleep (brain cells and circuits misfiring during sleep with particular behavioral manifestations), and not an actual neurological disorder,” he says.
The disorder is a perfect storm of drives that twist together during sleep — the drive to eat, the drive to feel satisfied and comfortable and, of course, the drive to sleep, which SRED patients can only achieve after they have fed themselves. It is also important to understand, Dr. Schenck says, "most SRED patients do not have day-time eating disorders such as bulemia nervosa or anorexia nervosa."
In short, SRED is a sign that something is awry in the sleep system, not a socially or psychologically fueled eating disorder. Sleep eaters only overeat when they are asleep. And it’s this aspect of SRED that is perhaps the most perplexing.
Life as a Sleep-Eater
We live in a culture that shames the overweight by telling them that their body size is entirely within their control, that their shape and “fitness” levels are physical manifestations of their willpower or lack thereof. In our culture, despite all scientific evidence to the contrary, body size is a moral issue, and thus subject to moralizing from all fronts. SRED is not caused by a pre-existing eating disorder, but it must surely prompt them once it becomes habitual.
I happen to be friends with two people who have SRED. They share a common narrative: Both started sleep-eating at an early age, both were misdiagnosed and not heard by their doctors, both were shamed for their “gluttony," both grew larger as the disorder grew stronger and both were misdiagnosed multiple times. Now in mid-life and still dealing with SRED, neither feels understood nor has found a miracle cure. As is the case with many parasomnias, SRED is not so much cured as managed.
Bianca, a writer in her 40s who lives in Toronto, remembers how she started sleep-eating at the age of 12.
“For the first several years it was primarily peanut butter on spoons, as evidenced by the lack of spoons in the kitchen drawer and the multitude of spoons under my bed,” she says.
Bianca sought help at a sleep clinic 15 years ago, but, as SRED was such a young disorder, the doctors there knew very little about it. Their suggestions were unhelpful.
“One focused on what ‘caused’ the disorder and that it was likely linked to the fact that I was denying myself certain foods during my waking hours and so my body was craving it in my sleep and searching it out,” she says. “If that was the reason then I was happy to eat whatever the hell I wanted during the day. Didn't change a thing.”
Dave echoes Bianca’s frustration. He says he spent what feels like his entire life trying out various therapies with little resolution. And while he knew his nighttime eating behavior was far from healthy, there was never a term for it. Eventually, he read a book on the subject and imposed his own treatment plan, which includes “therapy, locking the fridge at night, leaving a small quantity of food on the counter, journaling, better eating habits during the day, [seeing] nutritionists and exercising myself to death,” he says. Treatments, Dave admits, either haven’t worked or have only worked temporarily. He even tried sleeping pills, but they just made the night-eating — and the morning mess — that much worse.
An Ongoing Confusion
SRED is so poorly understood by the general medical community that a common response among sleep eaters is to resign themselves to the condition and attempt to minimize the impact of the disorder.
According to a recent study by Dr. R. Robert Auger, of the Sleep Disorders Center of the Mayo Clinic Rochester, those who study SRED have yet to agree on whether the disorder is actually a nocturnal eating syndrome (and thus part of the spectrum of eating disorders), a full-on parasomnia or some combination of both.
Furthermore, since sleep eating was first documented way back in 1955, Auger reports, there is little agreement on whether patients are actually asleep or not during outbreaks. There’s also little agreement on the sleep stage during which eating starts, why people with SRED tend to be female, if the disorder has a genetic component, and which, if any, medications are effective. Scientists cannot agree on the percentage of the population who suffer from SRED, with some citing approximately 1 percent, and others suggesting 5 percent. This leaves sufferers feeling cast aside.
“The most beneficial information I have is that there is a name for this, it is a field of study, and it is very misunderstood,” says Dave. “But when you can put a name on a behaviour and learn that you are not alone, it goes a long way to releasing oneself from the shackles of self-loathing and shaming.”
Dr. Schenck wants sufferers and the people in their lives to know that SRED prompts “tremendous disease burden from chronically disrupted sleep, [including] demoralization and depression about loss of control of your body during sleep, weight gain and body image problems.”
The SRED specialist does admit, however, that the latest findings are pointing researchers and doctors in previously uncharted directions.
“A new frontier in trying to understand SRED has to do with peripheral circadian clocks located in all organ systems,” he says. “It could be that the circadian clocks in the alimentary system are desynchronized from the sleep clock and are inappropriately activated during sleep, thus promoting the drive to eat.”
So, there is hope. At least, a small spoonful of it.