For teen, big strides amid pain

The Baltimore Sun

It started with a searing headache pounding both sides of her head. And then there was the sharp, shooting pain that struck like a lightning bolt inside her head. The pain started on the third day of school for then-high school junior McKenzie Hull, who had been doing homework.

"It was like throbbing," Hull said. "It became the worst headache of my life, and it never stopped."

That was Aug. 31, 2006.

For nearly two years, Hull has had an incessant headache, known as the New Daily Persistent Headache, an incurable condition, for which there is no known cause.

"It's always there," Hull said. "Sometimes it feels worse and I never know when it's going to happen. But it's always there."

With pain shooting through her head unpredictably, going to school became difficult for the teenager. She withdrew from her normal activities, as well as track and field events during that school year. Hull, who was at the top of her class, missed about 60 percent of her junior year.

"It was awful," said Hull, now 18. "I got so bored and I wanted to see my friends at school, and it got frustrating."

While sitting at home, she watched all the seasons of her favorite TV show House, about doctors trying to cure mysterious medical conditions. And when she wasn't watching television, she propped open her calculus and advanced placement statistics textbooks and taught herself formulas and concepts. Books on tape became her new best friend and her parents read the advanced placement U.S. history book to her.

"It's hard for her to read, because it exacerbates her headache," said Gay Bowen Hull, McKenzie's mother.

On the morning of her PSATs, a standardized exam for high school juniors, Hull woke up with a splitting headache and a sense of dread. How would she get through a three-hour test loaded with dense and dull critical reading passages?

"I just kept telling myself to keep pushing," Hull said. "I thought I hadn't been at my best, but I'm glad it worked out."

This spring, the Fallston High School senior was named a 2008 National Merit Scholarship winner. And she was also named salutatorian of her class.

"Great, now everyone will think I'm a nerd," Hull cracked.

After missing most of her junior year, Hull came back to classes during her senior year, keeping her attendance to about 85 percent and maintaining some normalcy.

As the president of the Harford County Regional Association of Student Councils, she tried to attend all her meetings. She also returned to track and field, running 800 meter races and the relays.

"What's wonderful is she's handled this with more grace," said Hull's mother. "I'm so in awe of how she's handled the most difficult situation. She's got a wonderful maturity and she has fought hard to lead a normal life. Nobody knows how sick she is because she puts on a big smile because she doesn't want people to pity her."

New Daily Persistent Headache is an extremely difficult condition to treat, said Dr. Jack Gladstein, director of the pediatric headache clinic at the University of Maryland School of Medicine and Hospital for Children.

"Once the diagnosis is made, it's a difficult long road for a lot of families," he said.

Treatment varies depending on the patient, and some medicines have little or no effect. Gladstein likens a brain affected by the condition to a charcoal grill.

"There's still smoldering and any kind of agitation makes the sparks fly: reading, bending your head forward or fighting with the parents," he said. "Since the brain is always ready to fire, any little excitation can make it worse. The most important role is not to give up hope. Sometimes it goes away as mysteriously as it comes. You try to maintain normalcy as much as possible."

Every now and then, the headaches intensify, and Hull carries around a few pills in case of the flareups. A few days ago, a severe headache prompted Hull to clutch her head during English class.

"You get used to it, I guess," she said. "I have to be positive about it. It gets very frustrating when the pain gets bad, but I'm more focused on how I'm going to handle it."

This summer, Hull will take a social science course at Harford Community College because she wants to see how much work is involved in a college course. When Hull heads to Denison University in Ohio this fall, her parents won't be there to read books aloud to her.

"It takes a lot of hard work," she said. "I'm figuring out what services the school will be able to provide. I'm kind of worried but hopeful."

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