As Sarah Wheaton stands in front of the camera, her legs buckle and she falls to the floor. Soon, her head sinks into her chest as she slips into a brief nap.
She jolts awake.
Back to sleep again.
Wheaton has narcolepsy, a neurological condition that causes people to experience excessive daytime sleepiness and the inability to stay awake for long periods of time. She posted a video of a narcoleptic attack to YouTube to raise awareness about the condition that affects an estimated 250,000 Americans. The video has been watched more than 2.5 million times.
“Narcoleptics go through their days as normal individuals who haven’t slept for a few days,” says Jerome Siegel, Ph. D, a professor of psychiatry at UCLA. The Siegel Lab, which he heads, studies disorders of REM sleep.
Many people with narcolepsy also have cataplexy, which Wheaton experiences in front of the camera. Cataplexy is the sudden loss of muscle tone, often leading to falls.
“They are completely conscious. They will be unable to move. They know what’s going on and they remember it later [but] their reflexes are suppressed,” says Siegel.
As she fights through the cataplexy, Wheaton experiences micronaps, short bursts of unconsciousness.
“To see this in video form, it really helps to capture the extremes of what cataplexy can do to you. Sarah can very easily transition from full conscious awareness to a sleep state,” says Dr. Michael Newman, a sleep medicine specialist who treats Wheaton.
She even experiences symptoms of narcolepsy during her interview with TODAY. Her eyes glaze over and she dozes.
“Sorry. Wow. I totally checked out there for a second,” she says. “It’s like zoning out really bad.”
Dr. Michael Thorpy, a neurologist at Montefiore Medical Center, says Wheaton’s symptoms seem worse than usual.
“Hers was a little atypical but it has many of the hallmarks we would see in someone who is having a cataplectic episode,” he says.
While there is no cure for narcolepsy—just treatments, such as prescribing amphetamines to keep people awake and alert—Siegel says experts do understand what causes it. In 2000, his research group learned that people with narcolepsy have fewer of a certain type of neurons, known as hypocretin, in their hypothalamus. This neuron promotes wakefulness. Most people have about 75,000 hypocretins while people with narcolepsy have only about 7,000.
“It’s [because of] an autoimmune type of attack that somehow destroys these brain cells and no others,” says Siegel.
Wheaton struggles to maintain a normal life. It can take her up to two and a half hours to wake in the morning and as shown by the YouTube video, performing even the easiest task seems impossible.
“There have been days where I have been lying in bed just crying my eyes out because I want to go and do something so bad but I can’t stay awake long enough to even get out of bed,” she tells TODAY.
Siegel agrees that life for narcoleptics can be very difficult.
“I think it is just a constant struggle for them. If you are narcoleptic, you wake up rested in the morning [and a little later] you are sleepy again,” he says. “They are always in a sleep deprived state.”