Coahulla Creek High School Colts

November 6, 2013

Facing your own mind

Coahulla Creek lineman Hunter Reed is overcoming his narcolepsy

Hunter Reed stood in front of some of his Coahulla Creek High School football teammates and told them something that for so long he held tight, like a football he wanted to keep.

“I have this thing wrong with me,” Hunter said in the locker room in 2012. “It’s called narcolepsy.”

For as long as Hunter can remember, he has wanted to sleep. That’s what happens when someone has narcolepsy, a brain disorder than affects a person’s sleep cycles and prevents him or her from getting a good night’s rest. It is similar to someone without narcolepsy only having three or four hours of sleep.

Still, Hunter has played football since he was 5. Now a senior, he has started on Coahulla Creek’s offensive and defensive lines the past three years. And despite difficulties keeping his eyes open — both on the field and in the classroom — he calls his disadvantage an “advantage,” which started when he found the strength to reveal his disability to his coaches and peers.

‘What is narcolepsy?’

Hunter is asleep the same amount of time as anyone else, but he only rests for a limited time. Hunter said he doesn’t dream, but his mind is always active when sleeping. He may go through a deep sleep “once or twice” per month and often wakes up with “a massive headache.”

“When someone goes to sleep or an average person goes to sleep, they go through seven ‘sleep rounds,’” Hunter describes. “I only go through one or two. So I wake up really tired and throughout the day, I’m really tired.

“I don’t think I’ve actually been rested.”

His mom, Wendy Voiles, said Hunter often talks in his sleep and sometimes sleepwalks.

“His mind is awake,” Wendy added, “but it’s like he’s paralyzed.”

Those descriptions fit the symptoms of narcolepsy on the National Institute of Neurological Disorders and Stroke website, which states: “Narcolepsy can greatly affect daily activities. People may unwillingly fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving or operating other types of machinery. In addition to daytime sleepiness, other major symptoms may include cataplexy (a sudden loss of voluntary muscle tone while awake that makes a person go limp or unable to move), vivid dream-like images or hallucinations, as well as total paralysis just before falling asleep or just after waking-up.”

Basically, it would be hard to perform normal, everyday tasks as effective as most because of constant drowsiness. Staying awake in class, for instance, is a struggle.

“During school, I’ll have to get caffeine to put in my body,” Hunter said. “So I’ll get a drink or something like that. If I can’t get up or only have a certain amount of time to do something, I’ll either bite my lip or have something to chew on. I won’t fall asleep chewing on something.”

Staying awake during practice or games is a struggle as well. Lined up on the field, the fatigue could slow Hunter’s reaction abilities.

“There are times my body and mind don’t let me do things,” he said, “but I can catch up.”

Hunter takes methylphenidate, a drug which his family had to find after a few trial-and-error attempts with other medicine. His stepdad, Bryan Voiles, was the first person to question whether there was something wrong. Early trips to the doctor equaled misses on the diagnosis. It wasn’t until seventh grade, after Hunter did a sleep test, when doctors finally answered the questions.

“In third grade, his teachers sent a letter home thinking he had (attention deficit disorder) or (attention deficit hyperactivity disorder) because he always slept in class,” Wendy said. “Narcolepsy isn’t the first thing people think about. So I took him to the doctor, and the doctor even said, ‘OK, We think he has ADD, not ADHD, because he isn’t hyper. So they put him on medication.

“That was the end of third grade. He had fourth grade, fifth grade and sixth grade. The medicine would work so-so. He was still falling asleep in class. Seventh grade came along and we went for a physical for football. He had to run in place and then sat on the chair. Well, he fell asleep while the physician was talking to him. He asked if we had him checked for narcolepsy, and I asked, ‘What is narcolepsy?’ So we went to T.C. Thompson and they did the (sleep) test, and he had it bad.”

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