Narcolepsy: my complicated and invisible disorder.

Ignorance is bliss

One of my first exposures to understanding narcolepsy was a Youtube video of a dog with narcolepsy. The video shows the dog experiencing loss of muscle of control and inaccurately describes the symptom as an inability to stay awake at any given moment. I used to not know how misleading these media portrayals of narcolepsy could be – until almost eight years ago.

 Around my sixteenth birthday, I began feeling a strange loss of control over the muscles in my body. I was playing soccer for a club team that year. During one game, as I won the ball from an opponent, I felt my knees give out – and in that moment, the opponent was able to steal the ball back. It wasn’t long that I lost control over my muscles, but it was long enough for me to look like I screwed up for no reason. I didn’t want to tell my coach or teammates, because I was afraid they wouldn’t trust me on the field, but I was starting to not trust myself. This wasn’t just in soccer; it became increasingly disruptive in my life. I was scared and had no idea what was happening to my body.

Around this same time, I started feeling unable to stay awake in class and during tests. Students laughed at my symptoms, and I felt embarrassed when teachers would comment on my sleepiness. For the first time in my life, I began to struggle to get the grades I expected for myself. At age 16, I decided to see a doctor after experiencing symptoms for at least six months. The doctor thought I had mono, but the only mono symptom I had was extreme daytime fatigue. It took over a year to receive an accurate diagnosis of narcolepsy with cataplexy, when I was 17, and in 11th grade.  Once I was officially diagnosed, I started taking a central nervous depressant at night which has helped me manage my narcolepsy symptoms. There is no cure for narcolepsy, and treatment for symptom management varies widely by person. Other treatment options include wake-promoting or stimulant medications to increase daytime alertness or antidepressant medication to decrease the occurrence of cataplexy.

Road to diagnosis

In terms of how quickly I was diagnosed, I’m grateful that I was diagnosed as early as I was. On average, it takes three to five years to get a narcolepsy diagnosis after the onset of symptoms. Narcolepsy is a chronic neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. It affects 1 in 2,000 people-200,000 Americans and 3 million people worldwide.

Excessive daytime sleepiness, cataplexy, hypnagogic/hypnopompic hallucinations, sleep paralysis, and disrupted nighttime sleep are the major symptoms of narcolepsy. When the opponent stole the ball from me in soccer, I was experiencing cataplexy: striking, sudden episodes of muscle weakness usually triggered by strong emotions such as laughter, surprise, or, in the case of my example, excitement. Public representation of narcolepsy often depicts someone who is constantly asleep, but disrupted nighttime sleep is common for people living with narcolepsy. Unlike my husband who sleeps soundly beside me, I wake up multiple times every night. There are two forms of narcolepsy: narcolepsy with cataplexy and narcolepsy without cataplexy. Recent research suggests that narcolepsy with cataplexy is caused by a lack of hypocretin, a key neurotransmitter that helps sustain alertness and regulate the sleep-wake cycle. Less is known about narcolepsy without cataplexy. I have clear memories of my 24 hour sleep study that included a nighttime portion (polysomnogram) and daytime nap portion (multiple sleep latency test.) Although I was already 100% convinced I had narcolepsy before taking the sleep study, I needed to take it in order to be officially diagnosed. Diagnosis is mainly determined by how quickly and frequently one’s brain enters rapid eye movement sleep (REM)/dream sleep during these tests. 

Unexpected goodness

Living with narcolepsy for almost nine years, I’ve found that with every new stage of life or situation, I have to juggle narcolepsy considerations. I have made adjustments to my work expectations by accepting that I need a job that will allow me to take a break to nap during the day. I tried doing a full time position as a Supported Employment Specialist at a psychiatric rehab program with a commute and no break, and I felt unable to succeed in that position due to my narcolepsy symptoms. My current job as a youth program coordinator has been a better fit for me. The job allows for a more flexible schedule, and I am a part of a team that has been accommodating to my narcolepsy condition. 

One of the biggest lessons that narcolepsy has helped me to learn is acceptance. It is hard to accept the things in life that seem bad, but through narcolepsy, I have learned to see goodness in unexpected places. I am sharing my story because narcolepsy is an invisible and misunderstood condition, and I want people with narcolepsy to not feel alone and hesitant to disclose their disorder to others.