Do you struggle to stay awake during the day? Is your child falling asleep in school? Does your teenager seem to be napping more than normal? If so, it may be due to excessive daytime sleepiness (EDS).
EDS means that you get overcome by an irresistible need to sleep during the day, and you can feel tired all the time. It’s the essential symptom of narcolepsy, and EDS is usually the first symptom that people notice.
Narcolepsy is not as uncommon as you might think. About 1 in 2,000 people in the U.S. is estimated to have narcolepsy. Often thought of as an adult sleep disorder, symptoms of narcolepsy most commonly start in childhood or adolescence. In fact, more than 50 percent of people with narcolepsy say their symptoms started before they turned 18. Misdiagnosis is common, and it can take as long as 10 or more years to get an accurate diagnosis after the onset of symptoms.
According to Dr. Raj Dasgupta, pulmonary and sleep specialist at the University of Southern California’s Keck School of Medicine, “Delays in diagnosis can impact the lives of children and adults alike. That’s why it’s so important to be aware of the symptoms of narcolepsy and how they can look and feel differently in adults and children.”
There are five major symptoms of narcolepsy. You don’t need to have them all to have narcolepsy.
1. Excessive daytime sleepiness (EDS) is an irresistible need to sleep during the day. EDS has been described by some as feeling fatigued or irritable, having difficulty concentrating, or having poor memory or mood changes. In children, EDS may appear as hyperactivity, problems paying attention, variable emotions, aggression or behavioral changes, which can lead to a misdiagnosis of ADHD or other psychiatric disorders.
2. Cataplexy is a sudden, brief weakening of muscles triggered by strong emotions such as laughter that can range from small muscle twitches to full body collapse. Cataplexy in children is sometimes mistaken for other conditions that can have a sudden, uncontrollable and unpredictable effect on the body such as epilepsy.
3. Hypnagogic/Hypnopompic hallucinations are vivid dreamlike experiences that seem real and are often frightening. They are called hypnagogic hallucinations if they occur while falling asleep and hypnopompic hallucinations if they occur while waking up.
4. Sleep paralysis is the inability to move or speak for a short time when you’re falling asleep or waking up. This can be a frightening or disturbing experience. Sleep paralysis can be hard to confirm in pediatric patients, as they may have difficulty describing it.
5. Disrupted nighttime sleep associated with narcolepsy means you often fall asleep quickly but wake up frequently throughout the night. You may report poor-quality sleep. Disturbed sleep can affect adults' and children’s attention, memory and ability to think and reason normally. Sleep problems are also a cause of distress for parents and may be one of the primary reasons for caregiver stress in families with children who have chronic illnesses.
“My daughter Caroline started experiencing symptoms of narcolepsy in the eighth grade,” said Carol Arnette of Williamsburg, Virginia. “She was exhausted, depressed, and began to isolate herself from her friends and family. We thought it was normal teenage behavior, but her symptoms progressively worsened. We took Caroline to a sleep specialist and after participating in a sleep study, she was diagnosed with narcolepsy. Since her diagnosis her life has changed. She no longer experiences the shame or guilt about feeling sleepy all the time.”
If you or your child may be experiencing symptoms of narcolepsy, it may be time to talk to a doctor. Visit www.MoreThanTired.com to take the Narcolepsy Symptom Screener and to find a sleep specialist near you.