Coffee grounds and bleach aren’t normal midnight snacks, but people with sleep-related eating disorder have consumed them and other dangerous items without being aware.
“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,” Jill, 62, told CNN. The Atlanta-based news outlet agreed not to use her last name because of stigma about the condition.
“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,” she added. “This is a whole other animal.”
SRED is common in women under 20, according to the Cleveland Clinic. Parasomnias (sleep disorders such as SRED) affect somewhere between 1% and 5% of adults. For Jill, the condition began to take hold when she was in middle school.
“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.’”
From buttered cigarettes to coffee grounds to bleach, people suffering from SRED can consume just about anything during their parasomnia events. According to the American Academy of Sleep Medicine, some people burn themselves or start fires while cooking in their sleep. And people who have SRED have an episode almost every night. Some have multiple episodes a night.
“I can’t even tell you how sick you feel,” Jill added. “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.”
According to Dr. Carlos Schenck, a professor and senior staff psychiatrist at the Hennepin County Medical Center at the University of Minnesota, it’s one of the toughest sleeping disorders to live with.
“Of all the parasomnias, sleep-related eating disorder has the worst impact on people’s lives,” he told CNN.
“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,” he continued.
It has been more than 20 years since Jill visited Schenck’s clinic and wrestled some control back from her disorder via a cocktail of three medications.
“I’m very, very, very grateful that I finally found someone who understands what I am going through,” she 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.”
“Don’t let doctors put you down, blow you off or make you feel bad,” she later added. “One doctor might not want to do a sleep study, so find another doctor that will.”
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