![]() ![]() These are more symptoms: hallucinations and sleep paralysis. “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.” “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. But at night, she explains, the other side comes out. And then it’s over.ĭuring the day, Julie deals with the visible symptoms of narcolepsy-the exhaustion and cataplexy. Her eyes flutter closed, and her chin drops to her chest. She pauses like she’s catching her breath. She smirks through a mouthful of toothpaste, and stops brushing. Later that night, I’m standing in Julie’s bathroom, pointing a big microphone at her mouth while she brushes her teeth. I know I was scared of taking it when I was first diagnosed. She takes a dose right before she falls asleep, and three hours later she wakes up and takes some more. Sodium oxybate regulates Julie’s sleep cycle and stops her from going into REM too soon. ![]() At night, she switches from stimulants to a liquid sedative called sodium oxybate, better known as GHB-the date rape drug. The side effects are different for everyone, but Julie usually feels fine as long as she controls her dose. Julie takes a pill every morning…on rough days she takes two. ![]() “I’ve tried all the different kinds of stimulants. She shows me her medication arsenal that night. But she’d rather avoid that, so she takes medication to keep her energy up. When they go out, it’s not a big deal if they have to go home early because Julie’s tired. “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 as much as he could say, ‘Oh yeah I get it,’ that he didn’t really get it.” “I was afraid that he might not really understand,” admits Julie. “And you asked me that on one of our first dates, because she was really nervous about it…” Still doesn’t,” he replies, turning to face Julie. I ask him what it’s like dating someone with narcolepsy. “And they’re awake and they’re aware, but they’re literally just paralyzed and they can’t get up off the ground.”īack at her apartment, Julie’s boyfriend Alex is home. “They may not be able to move for a minute or two,” says Scammell. Sometimes they’re mild-droopy face muscles and weak limbs-but sometimes the episodes can be severe. Usually, the episodes are brought on by positive stuff, like being surprised by a friend, or laughing at a great joke. The muscle weakness of cataplexy is like a mild waking version of the same paralysis your body goes into during REM sleep. “It’s sudden episodes of muscle weakness that are triggered by strong emotions.” “Cataplexy is this really unusual symptom,” says Scammell. Like more than half of people with narcolepsy, Julie also has cataplexy. 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.”īut feeling tired is only part of it. “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.”ĭr. “I’ll start rubbing my shoulders and stretching my neck,” she says. ![]() 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. But people with narcolepsy skip the other restful stages and jump right into REM, which is why they feel tired during the day. In REM, your brain is active, and your body is paralyzed so you don’t act out your dreams. Most people go through several stages of sleep, each deeper than the last, before going into Rapid Eye Movement, or REM sleep. Julie’s sleep feels different because it is different. It feels more like my brain was really, really active.” “It doesn’t feel like you’re just napping. I wake up thinking where am I?” she says. I went to my car, and it feels like forever. And most importantly, it’s easy to take nap breaks. She’s on the twelfth floor, with a great view of the sunset. Now Julie works for City of Hope, a clinical research organization, in a high-rise office building in downtown Los Angeles. “I used to drive home from law school and just scream at the top of my lungs in my car.” “For a while I just got angry at myself,” she says. She was a law student at the time, and narcolepsy wasn’t part of her plan. Julie Flygare was 22 years old when she was diagnosed with narcolepsy. Julie Flygare battles narcolepsy every day, and for the most part, she wins. ![]()
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