Coping with Narcolepsy

Diagnosing patients with milder forms of narcolepsy has become more straightforward in recent years, since scientists have pinned down the precise brain molecule linked to the disorder. The challenge now is helping patients figure out the best way to manage the condition.

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This is MORNING EDITION from NPR News. I'm Renee Montagne.

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And I'm Steve Inskeep.

We begin our personal health report this morning with a report on a mild form of narcolepsy. Scientists have identified the precise brain molecule linked to that disorder, and that has made the problem more straightforward to diagnose. The challenge now is helping patients figure out the best way to manage the condition. NPR's Allison Aubrey reports.

ALLISON AUBREY reporting:

Nadine Hosten has narcolepsy. Her body craves little bits of sleep during the day and has a hard time shutting off at night. Looking back, she says her peculiar sleep habits started in high school. She has only the foggiest memory of her early-morning geometry class.

Ms. NADINE HOSTEN (Narcolepsy Patient): I literally slept through 90 percent of the year. I sat in the back of the room and kind of learned to hold my head down and angle my pencil in such a way that you really couldn't tell how out of it I was.

AUBREY: She aced her class, she says, by borrowing notes and studying at night when she wasn't so tired. Twenty years later, morning is still a struggle as she makes the morning drive from her home in Bowie, Maryland, to a hospital in the District of Columbia, where she works as a physical therapist. The effects of her stimulant medication are starting to kick in. A half-hour ago, Nadine's energy level was noticeably lower. She seemed oblivious to the sound of her barking dog as she shuffled to reach the pill jars in her cabinet.

(Soundbite cabinet door shutting; dog barking)

Ms. HOSTEN: Here are my medications. This is my Concerta that I take, and then I think I told you I take another one, strictly to handle the side effects of that, and that's my propanolol or Inderal.

AUBREY: Hosten was diagnosed with narcolepsy five years ago, the same year scientists discovered that the disorder is caused by a deficiency in a brain chemical called hypocretin. Dr. David Gross of the Washington Hospital Center diagnosed her.

Dr. DAVID GROSS (Washington Hospital Center): The brain has over a trillion cells. There's only about 25,000 that make this hypocretin, so it's just a tiny percentage of the cells of the brain.

AUBREY: But without these hypocretin cells, the body's sleep switch gets out of whack.

Dr. GROSS: When you have enough hypocretin, the switch stays locked in the right spot so you're in the right state of consciousness when you're supposed to be. And without it, the switch gets sloppy and starts moving around by itself.

AUBREY: By the time Dr. Gross diagnosed Hosten, her situation had become dire. With two young children and a busy career wearing her down, Hosten had begun dozing off at the wheel as she drove home from work.

Ms. HOSTEN: I would see the red light, and my eyes are shutting, and I'm doing the one-eyed Jack thing because I can only keep one eye open, and I would have my foot on the brake and I would roll and tap the car in front of me because I would have fallen asleep prior to fully stopping.

AUBREY: Her guess was that perhaps she had chronic fatigue syndrome or low blood sugar. Never did she think narcolepsy. But when she wound up in David Gross' sleep clinic for a daylong evaluation, one of the first things he noticed was that she could doze off for a nap on command, and instead of going into restful sleep, she'd fall immediately into REM sleep, something that normally takes an hour or so. Hosten says during this time of diagnosis, she was feeling increasingly fatigued.

Ms. HOSTEN: This uncontrollable urge to just shut down.

AUBREY: Gross put her on a drug called Modafinal that had just been approved for narcolepsy, but she couldn't tolerate the heart palpitations that came as a side effect. So he switched her to a Ritalinlike stimulant called Concerta.

Ms. HOSTEN: For me the medicine is not an extra. It's not like I feel high. It's not like I feel energetic. It brings me to normal, maybe.

AUBREY: The rest of managing the disorder, Hosten says, comes down to lifestyle choices. She avoids alcohol, she goes to sleep at the same time every night, and she tries to exercise. She knows better than to push herself when she's feeling exhausted. So this means her house is less than tidy, and dinner is often something that can be made quickly.

Curing narcolepsy will require a major breakthrough, says Juliette Faraco of the Stanford University Narcolepsy Center.

Ms. JULIETTE FARACO (Stanford University Narcolepsy Center): Scientists are going to need to determine a way to put hypocretin cells back into the brain and deliver it where it's needed by the brain. And that's frontier medicine right now.

AUBREY: Nadine Hosten says she'll be the first to volunteer if scientists are ever ready to test a drug that could make her brain function normally.

Allison Aubrey, NPR News, Washington.

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