Imagine never feeling rested…ever. Julie Flygare battles narcolepsy every day, and for the most part, she wins.
Julie Flygare was 22 years old when she was diagnosed with narcolepsy. She was a law student at the time, and narcolepsy wasn’t part of her plan.
“For a while I just got angry at myself,” she says. “I used to drive home from law school and just scream at the top of my lungs in my car.”
That was eight years ago. Now Julie works for City of Hope, a clinical research organization, in a high-rise office building in downtown Los Angeles. She’s on the twelfth floor, with a great view of the sunset. It’s a nice place to work. And most importantly, it’s easy to take nap breaks.
“Yesterday I think it was eight minutes. I went to my car, and it feels like forever. I wake up thinking where am I?” she says. “It doesn’t feel like you’re just napping. It feels more like my brain was really, really active.”
Julie’s sleep feels different because it is different. Most people go through several stages of sleep, each deeper than the last, before going into Rapid Eye Movement, or REM sleep. In REM, your brain is active, and your body is paralyzed so you don’t act out your dreams. Then it starts all over again. But people with narcolepsy skip the other restful stages and jump right into REM, which is why they feel tired during the day.
Julie drives herself to and from work each day, which I thought was dangerous if you have narcolepsy, but she says it’s safe, as long as she listens to her body.
“I’ll start rubbing my shoulders and stretching my neck,” she says. That’s the first sign of her sleepiness. “And then my head might just feel like a weight on top of it, almost like you’re wearing some sort of a helmet that’s a little too tight or something.”
Dr. Tom Scammell, a neurologist at Harvard Medical School, says that feeling is impossible to ignore: “They can be struggling to stay awake in the same way that you and I would feel sleepy if we’d been awake all night the night before.”
But feeling tired is only part of it. Like more than half of people with narcolepsy, Julie also has cataplexy.
“Cataplexy is this really unusual symptom,” says Scammell. “It’s sudden episodes of muscle weakness that are triggered by strong emotions.”
The muscle weakness of cataplexy is like a mild waking version of the same paralysis your body goes into during REM sleep. Usually, the episodes are brought on by positive stuff, like being surprised by a friend, or laughing at a great joke. Sometimes they’re mild—droopy face muscles and weak limbs—but sometimes the episodes can be severe.
“They may not be able to move for a minute or two,” says Scammell. “And they’re awake and they’re aware, but they’re literally just paralyzed and they can’t get up off the ground.”
Back at her apartment, Julie’s boyfriend Alex is home. I ask him what it’s like dating someone with narcolepsy.
“Didn’t matter to me. Still doesn’t,” he replies, turning to face Julie. “And you asked me that on one of our first dates, because she was really nervous about it…”
“I was afraid that he might not really understand,” admits Julie. “That as much as he could say, ‘Oh yeah I get it,’ that he didn’t really get it.”
“And I think my reaction kind of threw you off a little bit, because I was like, ‘Yeah cool, whatever,’ and you were like, ‘No, not whatever, this is what it is,’ and I was like ‘No I hear you I get it. That’s cool.”
When they go out, it’s not a big deal if they have to go home early because Julie’s tired. But she’d rather avoid that, so she takes medication to keep her energy up. She shows me her medication arsenal that night.
“I’ve tried all the different kinds of stimulants. Right now I’m on Adderall.”
Julie takes a pill every morning…on rough days she takes two. The side effects are different for everyone, but Julie usually feels fine as long as she controls her dose. At night, she switches from stimulants to a liquid sedative called sodium oxybate, better known as GHB—the date rape drug. Sodium oxybate regulates Julie’s sleep cycle and stops her from going into REM too soon. She takes a dose right before she falls asleep, and three hours later she wakes up and takes some more.
“It’s pretty strong stuff,” she says. “People can be scared of it. I know I was scared of taking it when I was first diagnosed. I was like, ‘Am I gonna wake up?'”
Later that night, I’m standing in Julie’s bathroom, pointing a big microphone at her mouth while she brushes her teeth. It’s an odd moment. She smirks through a mouthful of toothpaste, and stops brushing.
“I’m getting cataplexy,” she says. It’s just a mild attack. She pauses like she’s catching her breath. Her eyes flutter closed, and her chin drops to her chest. And then it’s over.
During the day, Julie deals with the visible symptoms of narcolepsy—the exhaustion and cataplexy. But at night, she explains, the other side comes out.
“I woke up one night in the middle of the night to hear a burglar breaking in through the fire escape in the window in the living room,” she says. “And I could hear it, and then I saw my door open and this man rushed towards me with his arms stretched out to grab at my neck.”
These are more symptoms: hallucinations and sleep paralysis. Sometimes when Julie is on the edge of sleeping and wakefulness, her partly conscious brain falls into REM sleep and she starts having vivid dreams that feel just like real life. If it happens while she’s falling asleep, it’s called a hypnagogic hallucination; and if it strikes as she’s waking up, a hypnapompic hallucination. Because she’s in REM sleep, she is paralyzed—locked in her body the whole time.
“All I wanted to do was kick him away, push him away, run away, and I was absolutely terrified but I couldn’t move to respond.”
All the symptoms of narcolepsy—the sleepiness, the cataplexy, the hallucinations and paralysis—they can all be traced back to a single neurotransmitter called orexin. (Some scientists prefer the term hypocretin, but the international research community generally uses orexin.)
Orexin is in the hypothalamus, says Dr. Jerry Siegel, a sleep researcher at UCLA. The neurotransmitter helps regulate sleep, and narcoleptics don’t have enough of it.
“Normal individuals have about 76,000 of these cells,” he says. “Narcoleptics have about 7,000 of these cells.”
Siegel says orexin is probably killed off by the immune system, which would make narcolepsy an autoimmune disease. Research indicates the immune response is probably triggered by a combination of environmental and genetic factors, but the exact cause is still unknown.
Another looming question is how to replenish orexin and cure the disease. The answer might involve snorting the cells in a nasal spray, or implanting them back in the brain. But Siegel says progress is slow.
“We’re pedaling as fast we can, but it’s hard to predict when we’ll arrive at our destination.”
Saturday morning, after coffee and Adderall, Julie goes for a run in the hills of Griffith Park, a big patch of nature in Los Angeles.
“The thing I love about running is that it feels like it’s a completely different body than the one that has cataplexy and narcolepsy,” she says over the sound of running shoes on gravel. “Feels so strong.”
At the top of a big hill, she stops. She looks like any other runner in the park today, and she likes that. It reminds her that narcolepsy doesn’t define her.
“I don’t think we’re either completely sick or healthy. People aren’t just patients or caregivers or doctors. People are both. I care for other people; people care for me. That’s real life.”