People with hypersomnia regularly sleep soundly for more than nine hours a night, but rarely feel refreshed.
Sleep is your friend – except when you have a medical condition that causes it to take over your life.
One Friday night in August 2008, Jennie Murray went missing. Her mom had flown to Tempe, Arizona, where Murray was about to begin school at Arizona State University, but she never picked her mom up from the airport as planned.
Throughout the night, Murray didn't answer her phone. At noon the next day, her mom reported her missing to the police.
Then, Murray woke up.
"When she called home, the relief swept over me," her mom, Catherine, remembers. Murray had fallen asleep at a friend's house after a party – and didn't wake up for nearly two days.
"I saw the missed calls, and I went home," Murray recalls. "My mom was really happy to see me. She was really frightened."
Murray has a form of hypersomnia, or excessive daytime sleepiness despite clocking ample sleep at night, according to the Hypersomnia Foundation. The condition largely overlaps with what the American Psychiatric Association refers to as hypersomnolence disorder. While the average American knows what it's like to feel sluggish during the day because he or she isn't sleeping well enough or long enough at night, people with hypersomnia sleep so soundly and for so long that their lives are at the sandman's beck and call.
For Murray, it's like anesthesia. "It's this undeniable, overwhelming feeling of being pulled under, and you can't really fight it," she says.
How Much Sleep Is Too Much?
For most adults, a healthy dose of shut-eye clocks in at about seven to nine hours – a recommendation that about 40 percent of Americans fall short of, according to a 2013 Gallup poll. But studies show that once sleep-deprived people repay their "sleep debt" by sleeping close to 12 hours a night for up to a week, they simply can't sleep more than about eight hours nightly, says Dr. Charles Czeisler, chief of the Division of Sleep and Circadian Disorders at Brigham and Women's Hospital and chairman of the National Sleep Foundation's board. "Once you've satiated the sleep system, most adults will settle in at about one-third of the day being asleep," he says.
That's not the case for people with hypersomnia, who can often sleep soundly for more than 10 hours a night, night after night. "It's the difference between someone who's binge eating and someone who's starving all the time," says Michael Grandner, a psychiatry instructor at the University of Pennsylvania Perelman School of Medicine who studies sleep and its health effects.
Some hypersomnias are "secondary," meaning they have underlying causes such as depression, medication side effects, a head injury or chronic pain. Other sleep disorders like sleep apnea can cause someone to experience hypersomnia symptoms due to poor quality sleep at night, but once they’re treated, the sleepiness problem is usually solved.
Only after other potential causes for excess sleepiness are ruled out are people considered to have primary hypersomnia, which includes various subtypes, according to the Hypersomnia Foundation. Narcolepsy, for one, involves sudden "sleep attacks" lasting from a few seconds to a few minutes and is caused by a dysfunction in a key neurotransmitter involved in sleeping and waking. Recurrent conditions like Kleine-Levin syndrome, which is characterized by at least yearly bouts of excessive sleep (at least 11 hours a day and up to days at a time) that are accompanied by debilitating mood and behavior changes, are also a type of primary hypersomnia. All others without a clear root – Murray's condition included – are lumped in the catchall sleep disorder category of "idiopathic hypersomnia." In other words, the cause is unknown.
"It's hard to be honest about [my diagnosis] because … it's so unbelievable," says Murray, who was diagnosed just two years ago. "With hypersomnia, how do you tell someone, 'Oh sorry, I missed class because I was sleeping?' Or if you miss somebody's birthday because you were sleeping? There really isn't much sympathy for that."
But there's good reason to take it seriously: Hypersomnia can cause people to fall asleep at the wheel and is even linked to an increase risk of death. A 2010 analysis of 16 sleep studies found that people who sleep at length (usually defined as more than nine hours a night) die sooner than those who snooze for the recommended seven to nine. "In general, long sleepers tend to die sooner," Grandner says. "Why is that? No one really knows."
Hypersomnia also takes a significant toll on people's quality of life. For Murray, the condition has caused her to miss Thanksgiving and other holidays, land on teachers’ bad sides (“I would sleep through my morning classes” in high school, she says) and regularly worry her friends and family. At 25, she hasn’t yet graduated college because she’s had to take so much time off due to hypersomnia and Ehlers-Danlos syndrome, a connective tissue disorder. “What’s really scary is when I wake up, and I’m not sure what day it is,” she says. “What have I missed? What commitments did I not fulfill? Which is a horrible feeling.”
More Than 'Just Tired'
For about 10 years, Diana Kimmel, a 45-year-old mother of two in Atlanta, didn't feel like herself. She was increasingly tired, confused and walked around in a fog. Her speech slowed and her fine motor skills weakened. "I felt like I was drunk," Kimmel says.
But explaining the feeling to physicians proved fruitless. "Every doctor was just like, 'Well, you just have kids' or 'You work two jobs' or 'Lose some weight,'" Kimmel says. "It was just year after year of that."
Sometimes, she believed them. Then she fell asleep while driving. Her son, who was in the car, grabbed the wheel and swerved into a pole. While no one was severely injured, the accident served as a wake-up call.
"You go through your periods where you feel like you're going crazy and you're making it up, but then you just feel so bad at other times you just know that something's not right," Kimmel says. "When I had the accident, that really hit home with me that I was more than just tired."
In 2010, Kimmel was finally diagnosed via spinal tap with a form of idiopathic hypersomnia that seems to be caused by a high amount of a cerebrospinal fluid substance that acts like a natural sleeping pill. She now takes Flumazenil, a drug used to bring people out of anesthesia and reverse drowsiness. Although its effects are inconsistent and the drug is currently in short supply, it helps her live a slightly more normal life by, for example, completing a load of laundry without stopping to take a nap.
"You really have to advocate for yourself to find a doctor to listen and a doctor that's willing think outside the box of you're just tired or depressed," says Kimmel, who used to work in medical billing and photography, but stopped when she started receiving disability benefits last year. "We're not lazy, we're not dumb – it's just as if you were up for three or four days straight and can't function."
For Murray, treatment includes taking a sleep medication at night that helps consolidate her sleep so she doesn't sleep as long and a stimulant in the morning that helps wake her up. She also uses an alarm made for people who are deaf that vibrates the bed and emits a "piercing" sound, she says. But the most effective treatments are lifestyle-related. Murray maintains a routine schedule and remains noncommittal when invited to a party or out to a meal. Right now, her goal is to graduate college and then explore careers in health-related fields.
"It means I don't lead a normal 20-something's life," she says, "but that's OK." Grandner says there's hope for people like Murray, since research – and treatments – in the area are evolving. Only recently did scientists peg the particular neurotransmitter involved in narcolepsy, which will help guide treatment options for a range of sleep disorders. "The studies that uncovered the genetics of narcolepsy opened the floodgates in terms of understanding how at least a subset of hypersomnias work," Grandner says. "We're learning a lot more about this system every year."