Patient Stories

“I couldn’t work or be there for my family. I couldn’t even form a sentence as my cognitive functioning faltered. My self-esteem got so bad because some family members were telling me, ‘Moms don’t get to take naps.’”

Narcolepsy is often misdiagnosed as other conditions that can have similar symptoms including2:

  • Depression
  • Insomnia
  • Obstructive sleep apnea
  • Attention deficit hyperactivity disorder (ADHD)
  • Epilepsy

Meaghan’s Story

Hiding in Plain Sight: Learning the Signs of Narcolepsy

When Meaghan was pregnant with her second child, she found herself struggling to get out of bed. Many people assumed she was experiencing depression because she was also coping with the recent death of her brother. What was really going on with her brain wouldn’t be properly diagnosed for another four years. Meaghan was unknowingly living with a neurological condition called narcolepsy.

Meaghan’s search for answers led her to various doctor’s visits, medical testing and even electric-shock therapy to identify a proper diagnosis and path forward. After years of experiencing excessive daytime sleepiness (EDS) and sleep hallucinations without conclusive answers, Meaghan participated in a sleep study, which finally provided the answers she was so desperately looking for. She was diagnosed with narcolepsy and learned her symptoms were treatable.

Looking back, Meaghan realized her narcolepsy began in childhood. Although narcolepsy is often thought of as an adult condition, symptoms most commonly start in childhood or adolescence.2 When looking through family albums, she would often see photos of herself asleep on couches during family functions, and one time asleep on a boat while fishing with family. Throughout her school years, she would nap before starting her homework.

This symptom, EDS, is one of the primary symptoms of narcolepsy . There are five key symptoms of narcolepsy – EDS, cataplexy, disrupted nighttime sleep, sleep paralysis and hypnagogic/hypnopompic hallucinations.2 All people with narcolepsy experience EDS; however, not all will experience all of the other four symptoms.3,4 People living with EDS can experience an irresistible need to sleep during the day.5 Most people feel tired sometimes, but for someone with narcolepsy, it can be extremely difficult to stay awake and alert throughout the day.

Narcolepsy is often considered a rare condition, but it’s not as uncommon as some might think. About 1 in 2,000 people in the U.S. is estimated to have narcolepsy . Delays in proper diagnosis can significantly impact the lives of those with narcolepsy6 contributing to issues such as poor performance in school or work and driving limitations.4

Misdiagnosis is common, and people with narcolepsy can suffer for more than a decade before getting the right diagnosis.1,2 Meaghan believes raising awareness of narcolepsy will help people like her who suffer in silence without proper treatment or education. With her symptoms under control, she is spending time reconnecting with her children and running the family business with her husband. Narcolepsy caused Meaghan to miss major life moments, but with proper treatment she regained control of her life and appreciates the small joys each day.

1Morrish E, King M, et al. Factors associated with a delay in the diagnosis of narcolepsy. Sleep Medicine. 2004;5(1):37-41.
2Thorpy, M. and Krieger, A. (2014). Delayed diagnosis of narcolepsy: characterization and impact. Sleep Medicine, 15(5), pp.502-507.
3Sateia, M. (2014). International Classification of Sleep Disorders-Third Edition. Chest, 146(5), pp.1387-1394.
4Ahmed I, Thorpy, M. Clinical Features, Diagnosis and Treatment of Narcolepsy. Clin Chest Med. 2010;31(2):371-381.
5Narcolepsynetwork.org. (2019). Narcolepsy Fast Facts. [online] Available at: https://narcolepsynetwork.org/about-narcolepsy/narcolepsy-fast-facts/ [Accessed September 6, 2019].
6Thorpy, M. and Hiller, George. (2017). The Medical and Economic Burden of Narcolepsy: Implications for Managed Care. American Health & Drug Benefits, 10(5), pp. 233-241.