A Narcolepsy Story

Autumn Taylor was a bright, driven teenager who, despite her Type A personality, was labeled as unmotivated and lazy. She couldn’t stay awake in school, and although she wanted to participate in activities like gymnastics, she actually spent much of her time sleeping or trying to sleep at home. It wasn’t until she ran through nearly a dozen specialists that Autumn received a correct diagnosis and improved her condition when she began seeing sleep specialists at University Hospitals Rainbow Babies & Children’s Hospital.

Since Autumn was two years old, she experienced problems with sleep, suffering from vivid night terrors. Digestive issues also plagued her but seemed unrelated.

“For years and years, it seemed like I had so many problems,” Autumn said. “I was so tired. I kept getting sick. I had stomach issues. We kept trying to find what was wrong but never got any concrete answers.”

Through the years, Autumn’s parents took her to cardiologists, rheumatologists, endocrinologists and digestive health experts. All the while, she cared so much about school and gymnastics, but couldn’t participate at the level she wanted. She felt she was viewed as indifferent and uncaring when she was really giving all she had to give.

Autumn never quit trying to find a diagnosis. She did her own research, scouring the internet. One day, she came across a YouTube video about narcolepsy.

“The person was describing their narcolepsy symptoms, and it was like they were talking about me and how I felt,” she said.

Often seen in popular culture as a joke, narcolepsy is a serious neurological disorder that disrupts the brain’s ability to regulate sleep-wake cycles, leading to extreme, uncontrollable or excessive daytime sleepiness and sudden “sleep attacks.” It is characterized by additional symptoms like sudden muscle weakness (cataplexy), sleep paralysis, and vivid dreams/hallucinations experienced at the moment of falling asleep or waking up. Not all people with narcolepsy have these other symptoms.

While it is a rare condition, pediatric narcolepsy is often underdiagnosed. The incidence of the disease increases with age and is highest in adolescents (12–17 years), with approximately 24 diagnoses per 100,000 individuals.

“Narcolepsy can start in childhood as young as kindergarten,” said Jennifer Stone, a pediatric sleep nurse at UH Rainbow Babies & Children’s Hospital. “It takes on average 8 to 10 years to get an accurate diagnosis. So, children who are sleepy in school and have trouble performing and concentrating may be mislabeled as being lazy or having ADHD when they really would benefit from a diagnosis of narcolepsy and proper treatment.”

Autumn’s parents took her to her PCP, who was skeptical about narcolepsy but referred her to UH Rainbow Babies & Children’s Hospital sleep specialists for evaluation.

“Autumn underwent an overnight sleep study followed by daytime testing that is unique to diagnosing narcolepsy at one of our University Hospitals sleep testing centers,” said Dr. Sally Ibrahim, an adult and pediatric sleep medicine specialist with University Hospitals. “The results confirmed narcolepsy, and we began treating her condition right away.”

In Autumn’s case, she was prescribed two different medications: modafinil and pitolisant. Both are used to treat excessive daytime sleepiness in narcolepsy, but they have different mechanisms. Pitolisant is a non-stimulant H3 receptor antagonist, while modafinil is a stimulant.

“I don’t take medications lightly, but was willing to try anything,” said Autumn. “This combination was like magic for me. It changed my life. It lifted a weight off of me, and I felt energy I hadn’t had in years.”

As it turned out, the digestive issues that seemed unrelated to Autumn’s sleep were connected to her narcolepsy.

“Narcolepsy is a disease related to the orexin system, which plays a central role in the dynamic regulation of the digestive system and metabolism. It can be associated with disturbances in the autonomic nervous system,” said Dr. Ibrahim. “While there is ongoing research in the area, narcolepsy can also impact metabolism, weight and other aspects of health.”

Now 17, Autumn’s condition has greatly improved, and she feels like herself, participating in normal teenage life, including gymnastics.

“So many problems can come from not sleeping. Yes, it seemed like I slept a lot, but the sleep quality was very poor,” she said. “I couldn’t think through a problem because I didn’t have the energy. Gymnastics is going so much better now. I go several days a week with energy. I had to quit at one point, which was heartbreaking.”

Autumn wants other kids who are struggling to know that they’re not stupid or lazy – they have a condition that can be managed.

“We want to help kids, adolescents and even young adults like Autumn correctly identify their condition and begin treatment as early as possible,” said Dr. Ibrahim. “With medical intervention, children and teenagers with narcolepsy can fully participate in life.”