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Allison's Journey with Narcolepsy: Understanding Symptoms Diagnosis and Finding Hope

  • Feb 28
  • 3 min read

Updated: Mar 2

Narcolepsy is a complex neurological disorder that affects the brain's ability to regulate sleep-wake cycles. For many, the path to diagnosis and treatment can be long and confusing. Allison’s story sheds light on this journey, showing how symptoms can evolve and how finding the right support and treatments can improve quality of life.


Eye-level view of a bedroom with a bed shaking alarm on the nightstand
Allison's bedroom setup with a symbolic bed shaking alarm to aid waking

Early Life and Health Background


Allison was healthy for most of her early years. The only significant health event was a febrile seizure at 10 months old, triggered by a high fever of 106 degrees, likely caused by respiratory syncytial virus (RSV). Despite this early scare, she grew up active and energetic. She participated in a variety of sports and activities including soccer, track, dance, swimming, volleyball, and theater. Her energy and enthusiasm made her a well-rounded and busy child and teenager.


The First Signs of Fatigue


During her sophomore year of high school, Allison began to notice changes. She started taking frequent naps on the couch after school and practice. Completing assignments became a struggle, and her energy levels dropped noticeably. At first, these symptoms were thought to be related to depression, a common assumption when fatigue and low motivation appear in teens.


Allison worked with a therapist who confirmed depression but also encouraged her to explore other possible causes for her fatigue. This led to medical testing that revealed an active Epstein-Barr virus infection, commonly known as mononucleosis. After a period of rest and recovery, Allison seemed to improve.


A Mysterious Illness and Worsening Symptoms


Before COVID-19 testing was widely available, Allison experienced symptoms resembling a mild cold, which was later suspected to be an early case of COVID-19. Whether this illness contributed to her condition remains unclear. What followed was a troubling increase in excessive sleepiness. Throughout her junior and senior years, Allison found herself sleeping more than usual, difficult to wake, and frequently napping during the day.


These symptoms raised concerns, and further testing was done. The results led to a diagnosis of narcolepsy just before she started university.


Facing Narcolepsy at University


Starting college at the University of Michigan brought new challenges. Being away from home meant Allison had to manage her narcolepsy largely on her own. She often relied on her roommates to help wake her for classes. The disorder made it difficult to maintain a regular schedule and stay alert during the day.


Treatment began with various stimulant medications designed to improve wakefulness. These helped, but Allison still struggled with the unpredictable nature of narcolepsy.


Finding Effective Tools and Treatments


Two key changes made a significant difference in Allison’s daily life:


  • Bed shaking alarm: Originally designed for people with hearing impairments, this alarm vibrates to wake Allison gently but effectively. It helped her get up on time without relying on loud sounds that might not always work.


  • REM sleep suppressor: This medication helped Allison achieve more restorative sleep by reducing the rapid eye movement (REM) phase disruptions common in narcolepsy. Better sleep at night meant less daytime sleepiness.


Alongside medication, Allison focused on improving her nutrition and maintaining regular exercise. Having a clear purpose each day gave her motivation to get out of bed and stay active despite the challenges.


Living with Narcolepsy Today


Narcolepsy has no cure, but Allison’s experience shows that a combination of treatments and lifestyle adjustments can improve quality of life. Understanding her symptoms early and seeking a thorough diagnosis were crucial steps. Her story highlights the importance of looking beyond initial assumptions like depression when fatigue persists.


For those living with narcolepsy or supporting someone who is, Allison’s journey offers hope. Finding the right combination of medical care, practical tools, and personal motivation can make a meaningful difference.


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