A narcoleptic teenager waiting for cataplexy to pass
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Narcolepsy is a neurological condition characterized by severe fatigue, irresistible episodes of sleep and general sleep disorder. It is a kind of dyssomnia. more...

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Symptoms of narcolepsy

The main characteristic of narcolepsy is overwhelming excessive daytime sleepiness (EDS), even after adequate nighttime sleep. A person with narcolepsy is likely to become drowsy or to fall asleep, often at inappropriate times and places. Daytime naps may occur with or without warning and may be irresistible. These naps can occur several times a day. Drowsiness may persist for prolonged periods of time. In addition, night-time sleep may be fragmented with frequent wakenings.

Three other classic symptoms of narcolepsy, which may not occur in all patients, are:

  • Cataplexy: sudden episodes of loss of muscle function, ranging from slight weakness (such as limpness at the neck or knees, sagging facial muscles, or inability to speak clearly) to complete body collapse. Episodes may be triggered by sudden emotional reactions such as laughter, anger, surprise, or fear, and may last from a few seconds to several minutes. The person remains conscious throughout the episode.
  • Sleep paralysis: temporary inability to talk or move when falling asleep or waking up. It may last a few seconds to minutes.
  • Hypnagogic hallucinations: vivid, often frightening, dream-like experiences that occur while dozing, falling asleep and/or while awakening.

Daytime sleepiness, cataplexy, sleep paralysis, and hypnagogic hallucinations also occur in people who do not have narcolepsy, more frequently in people who are suffering from extreme lack of sleep.

In most cases, the first symptom of narcolepsy to appear is excessive and overwhelming daytime sleepiness. The other symptoms may begin alone or in combination months or years after the onset of the daytime naps. There are wide variations in the development, severity, and order of appearance of cataplexy, sleep paralysis, and hypnagogic hallucinations in individuals. Only about 20 to 25 percent of people with narcolepsy experience all four symptoms. The excessive daytime sleepiness generally persists throughout life, but sleep paralysis and hypnagogic hallucinations may not.

The symptoms of narcolepsy, especially the excessive daytime sleepiness and cataplexy, often become severe enough to cause serious disruptions in a person's social, personal, and professional lives and severely limit activities.

What happens in narcolepsy

Normally, when an individual is awake, brain waves show a regular rhythm. When a person first falls asleep, the brain waves become slower and less regular. This sleep state is called non-rapid eye movement (NREM) sleep. After about an hour and a half of NREM sleep, the brain waves begin to show a more active pattern again, even though the person is in deep sleep. This sleep state, called rapid eye movement (REM) sleep, is when dreaming occurs.

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A Dream and A Nightmare - golfer Nicole Jeray battle narcolepsy
From Golf Digest, 11/1/01 by Jaime Diaz

Nicole Jeray's life has been turned upside down by the sleep disorder narcolepsy, but she's determined to pick herself up and return to the LPGA Tour

When LPGA veteran Nicole Jeray plays her best golf, it's all she can do to stay awake. Solid drives can put her "out," flushed iron shots have left her "gone," making long putts can mean "see ya," and she fears that her first hole-in-one will send her into "complete noodle." So when Jeray hears other golfers explain away the vagaries of bad play with the phrase, "I guess I just went to sleep out there," she can't help but think, "You have no idea."

Jeray, 31, suffers from acute narcolepsy, a condition that causes chronic sleepiness, and the associated sleep disorder cataplexy, in which strong emotions--like the thrill of a good shot--trigger immediate muscle weakness and temporary paralysis. During a competitive round, she'll often be thrust into brief, instant sleep as often as 50 times.

Golf is complicated for Jeray, but it's nothing compared to life. Since her symptoms began in 1993, Jeray has been pulled over by police for driving erratically, fallen asleep in movies, and collapsed anywhere plain old fun is to be had--from comedy clubs to tennis courts to parties to playing with her dachshund, Guinness. Jeray goes down in a heap at least a few times a week, and at any given time, she'll have a scab on her knee, a knot on her head, or a rug burn on her face as testament to her latest surrender to gravity.

There's really no telling when Jeray will fall. During a recent visit to her native Berywn, Ill., to see her mother, Brigitte, the two were alone on the practice range when Nicole decided to explain a swing point by demonstrating with Brigitte's left-handed club. "I'd never hit left-handed, so when I hit this great shot on the first swing, I let myself get excited, and it was see ya," Nicole says. "Then, because I was mad at my mom, God bless her, for not catching me, that was more emotion, so I was on the ground for more than a minute before I could move."

In practical terms, it means that despite being a naturally energetic, outgoing and fun-loving person, Jeray has to remain constantly on her guard against feeling too happy, too embarrassed, too entertained, too angry, too sad, too in love, too good--too anything. "Oh, my gosh, it's kind of sad," Jeray says. "The things that get me the most excited are the things I have to watch out for the most. Basically, I have to deaden myself. I hate it, but I have to."

Not that Jeray despairs. In contrast to the depression and low self-esteem that narcolepsy often engenders, Jeray speaks of her condition with candor. The upbeat approach persists despite a career that has been a hard go. Jeray's official earnings while bouncing back and forth between the LPGA and the Futures circuits for the past nine years total less than $150,000. She has won three tournaments on the developmental tour but has never finished higher than 10th in an LPGA event. After a solid season on the Futures tour in 2001, Jeray is planning to make it back to the LPGA for a fifth time at the tour's final stage of qualifying Oct. 10-13. She has overcome tougher odds simply maintaining her career.

"Nicole is remarkable," says Dr. Paul Fredrickson, co-director of the sleep-disorder center at the Mayo Clinic in Jacksonville, Fla., who treated Jeray for two years beginning in 1997. "People with a severe condition like hers almost always have a difficult time achieving in life. It's no accident that through history, there are almost no famous persons known to have suffered with severe narcolepsy. But Nicole is blessed with a personality, attitude and determination that have allowed her to survive in an extremely competitive field."

Some form of narcolepsy attacks approximately one of every 2,000 Americans. It is distinguished by chronic daytime sleepiness akin to what a person would feel if they were severely jet-lagged, awakened in the middle of the night, or forced to go without sleep for 24 hours.The disorder usually starts in the teenage years or early 20s and often goes untreated for a long time--according to the Stanford University Center for Narcolepsy, the average period from inception to diagnosis is 14 years. Or the disorder never gets detected at all.

Former national-champion diver Tracy Bonner, who suffers from narcolepsy but not cataplexy, expresses admiration for the hurdles Jeray has cleared. "Nicole has got to be an amazingly resilient and adaptable person," says Bonner, who has never met Jeray. "Narcolepsy is bad enough, but I can't even imagine competing with cataplexy."

Even Jeray wonders how she does it. The key is putting herself in a state of emotion-proof concentration. "On the way to the course, I get my game face on," she says. "Ever since I was a little kid, I've been able to really concentrate."

Still, she can't completely stop the effects of cataplexy. After a well-struck shot that draws applause from the gallery, she will feel a sensation of overwhelming weakness in her muscles even before reaching her follow-through. A moment later, her eyelids will droop, her face will go slack, she'll experience fuzzy double vision, and she will freeze for about 10 seconds before her muscles regain strength and normal movement. Because of the misfiring of neurotransmitters, Jeray has entered the stage of sleep in which the body is paralyzed so people cannot physically act out their dreams.

One of the ironic aspects of the disorder is that while sufferers normally can't speak during episodes, they continue to hear normally and think clearly.

"I really want to acknowledge the fans, but I can't even produce a little wave," says Jeray. "When I know I'm gone, I usually get out of it by thinking of something other than the pleasure of the shot, like 'What am I going to eat for lunch?' or concentrating on getting the tee out of the ground. By the time I come back and try to connect with the people, they're watching the next player or wondering why I'm such a cold robot."

Similarly, when a long putt drops, Jeray is usually stricken again. "Sometimes I'm so shocked and excited the ball goes in, it takes me forever to actually get moving so I can get the ball out of the hole," she says. "I can feel everybody thinking, 'C'mon Nicole, quit milking it.' "

Actually, other than the fatigue that she will always combat until a cure is found for narcolepsy, tournament competition is the area of life in which cataplexy affects Jeray the least. "I'm very blessed to have golf as a profession," she says. "What I have to do to manage my condition is just what good players try to do--concentrate and block out emotions. Usually, the more pressure, the better I concentrate and the less often I'm gone."

In the first stage of the LPGA qualifying school, Jeray was so focused that when she birdied the last two holes to assure a spot in the final stage she felt only the slightest muscle weakness. "I'm also lucky that I've never had a bad temper," she says. "My gosh, if I did, I'd be a total noodle. Bad shot? Get mad? See ya. Players who know about my cataplexy say, 'Oh, Nicole, you've got it easy. You have to stay focused.' They're kidding, though. They know it's been rough."

Jeray grew up playing all sports, "just constantly going." Her father, Duane, died when Nicole, the youngest of three children, was 6. She turned to golf at age 11, and honed her game at nearby Cog Hill. As an amateur, she was twice a semifinalist in the U.S. Women's Public Links.

While attending Northern Illinois University on a golf scholarship, Jeray began to suffer from chronic fatigue and sleepiness. "At first I thought it was because I was a finance major, but I couldn't shake it," she says. "I had always associated fatigue with laziness. So I tried to work harder, and I just got more tired."

Still, Jeray won eight college tournaments, and after turning pro made it through Q school on her first try. But beginning in 1994, her next three years on the LPGA Tour were a haze of loneliness, financial struggle and, above all, sleepiness. "I tried to work out of it by playing every Monday, every pro-am, every tournament," she says. "I just played worse."

Scares on the road

Jeray became forgetful, a problem that still plagues her to the extent that her regular caddie, Sam Henshaw, has to remind her of her scores on some holes, and her swing coach, Kevin Weeks, writes in a notebook so she won't forget what she is working on. Most chillingly, she became a threat to herself and everyone else on the road when driving. Because she would drop into a sleep-like state during long drives, she would sometimes weave dangerously. She estimates that from 1993 to the time she was diagnosed in 1996, she was pulled over 20 times by police.

"Once I stopped in a gas station, because I had gotten so tired I just had to stop, and when I came out there were four police cars surrounding my car, red lights flashing," says Jeray. "They searched me for drugs. I can't imagine how erratic my driving must have been." On another occasion in 1995 near Orlando, Jeray fell asleep, causing her vehicle to cross the center divider on a bridge and force an oncoming car toward the guard rail to avoid a head-on collision. The two cars actually touched side-view mirrors. "The woman had a baby in the car," Jeray says with a shudder. Jeray said she hasn't been pulled over since being diagnosed, when proper medication dramatically helped her stay attentive behind the wheel. Still, in the past year, fellow player Michelle Scerri has done almost all of the driving.

"We were all worried about Nicole," says LPGA player Connie Masterson, one of her best friends. "There was her driving, and she was getting really depressed about her fatigue. She wondered if she was going crazy. There were a lot of tears."

Finally, at the LPGA stop outside Minneapolis in 1996, Jeray for the first time experienced the cataplexy symptoms of sudden muscle weakness after hitting a good shot. The next week, in Rochester, N.Y., she was crossing the street to the practice range wearing her customary smile ("I smile a lot," Jeray says. "I don't know why"), when a traffic officer having a bad day shocked her by saying, "Wipe that smile off your face--I know it's fake."

"It hurt my feelings," Jeray says, "and all of a sudden, I was gone, on the ground." Worried that she might have a life- threatening illness, Jeray saw a doctor. When he suggested that she might have narcolepsy, she looked it up in a medical dictionary. "I was amazed," she says. "It was completely me."

While medication and naps helped her deal with narcolepsy, no proven treatment for cataplexy has been found. Until there is one, Jeray accepts that she will fall down every now and then.

It actually happens seldom on the golf course, although her disappointment was so great on the final day of the 1997 LPGA Q school that she dropped like a sack at one point on the back nine. Jeray is more susceptible to collapsing when she is particularly relaxed or tired at the end of practice rounds, "when I let my guard down."

She more often goes "noodle" off the course, especially when she is among friends and forgets that laughing can mean trouble. She estimates that she sometimes goes down two or three times a day.

Late one evening at a bar, one of Jeray's friends cracked her up with a joke, and Nicole fell backward off a stool and hit her head on the concrete floor. After she got up, ears ringing but otherwise fine, Nicole noticed other customers pointing, and the bartender refused to serve her. "That made me mad, because I hardly drink and I've never been drunk," she says. "But the worst part is that nobody would say anything funny the rest of the night."

That was embarrassing, but what has qualified as mortifying for Jeray has been her literally swooning after being surprised by the sight of particular men she has had an otherwise secret crush on. "Going complete noodle in front of some guy is kind of a dead giveaway," she says.

Jeray has learned the hard way to sit down, or at least make sure there is a soft surface below her, when she goes to a comedy club, watches the television show "Whose Line Is It Anyway?" or plays "chase the laser light" with Guinness. Her intense laughter and ensuing episodes were so problematic during the movie "Liar Liar" that she had to watch it three times to see it all. And when she is in a safe place, as she was recently while firmly seated at a card table with friends, Jeray will sometimes indulge to excess, as if to rebel against all the restraint she has to live with.

"Nicole started laughing, and she went down on the table, and when she came out of it, we made her laugh again, and then none of us could stop cracking up," says Masterson. "She went up and down like a yo-yo. It was funny and sad and sweet all at the same time. You have to love Nicole. She is so brave and wonderful."

Such cathartic moments aside, Jeray can slip into doldrums when her condition seems too much to cope with. "Sometimes I see how much people who aren't tired can get done, and I wonder 'What's the use?' " she says. "And I wonder, if I have children, how am I going to be able to take care of them when they do something like take their first steps. I'll be out."

Hope for the future

But Jeray wouldn't have come this far if her natural disposition weren't one of hope and optimism. She was buoyed by a conference on narcolepsy she attended last year in St. Louis, where for the first time she met other other people with the disorder. "I don't feel alone anymore," she says. She holds out hope that the drug Xerym, which the FDA has delayed approving because of its abuse in date rape, will significantly alleviate her cataplexy. And she firmly believes she will regain her LPGA card and have real success upon her return.

"I won't play as much--I'll be able to say no, I'll know how to stay fresher, and I've become a better player," she says. "I go down--complete noodle--but I always get back up."

For more information on narcolepsy, visit www.narcolepsy.com.

COPYRIGHT 2001 New York Times Company Magazine Group, Inc.
COPYRIGHT 2001 Gale Group

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