A personal retelling of a journey through narcolepsy treatment
I am not a science person and have never felt the urge to understand the building-block mechanics of the world we live in. I have always been content sitting with the unknown when it relates to outer space or to the spaces within me, the ones between my cells. Instead, I have always been drawn to more abstract methods of interpreting the world—creative knowledge, subjective forms of communication, and the exploration of human emotion—not physical materials. But the science behind not knowing becomes more personal when it’s related to a diagnosis. Knowledge gaps become spaces that matter intimately when they structure my own day-to-day. Of course science matters. But it didn’t matter to me until it was the only pathway to the knowledge I needed.
“Essentially, you haven’t slept in three years,” was how my neurologist explained the situation. He had asked me how well I thought I had slept the night before, hooked up to 22 wired electrodes. “I never wake up overnight,” I had told him. I was doing the sleep study because for the previous year I had been sleeping 14 hours a day, every day. Sleeping wasn’t the problem; staying awake was. It turns out the problem was both. He glanced at my results sheet. “Actually, you wake up every four minutes, just for a split second,” he informed me. I also fall asleep in under two minutes, a quarter of an hour faster than the average person. I haven’t peacefully drifted off to sleep since high school. My diagnosis: narcolepsy.
The two primary symptoms of narcolepsy are abnormal rapid eye movement (REM) sleep and the excessive daytime sleepiness (EDS) that results from these disturbed sleep cycles. An average person enters into REM sleep—the part of the sleep cycle in which dreams occur—after an hour and a half. For narcoleptics this stage happens immediately. This is why I dream during all of my naps. After plunging into REM, I spend the rest of the night spiking in and out of deep sleep and into brief flashes of wakefulness that I can never recall the next day.
Several other common symptoms of narcolepsy stem from the brain’s confusion surrounding these different sleep stages. Cataplexy is a temporary loss of muscle control, akin to the loss of muscle control that happens during healthy sleep. In narcoleptics, it can occur during waking hours if triggered by a strong emotion. Sleep paralysis is when the body’s inability to move during sleep carries over into consciousness. Hypnagogic hallucinations are realistic dreams, often nightmares, that the brain is unable to distinguish from fiction.
Though I have never experienced cataplexy or sleep paralysis, I could develop these symptoms in the future, and I often struggle to separate the fiction of my dreams from the facts of my waking hours. Halfway through my first year, I called my mom, upset about my decision to transfer to McGill. “This is the first I’m hearing of it,” she responded before we realized that I had never actually applied to transfer. Since then, I have gotten better at sifting through the hazy memories of my own historical fiction.
Medication helped. Though narcolepsy has no cure, it is very treatable. I used to take the highest recommended daily dose of Ritalin with an additional 10 mg prescribed “as needed,” which it usually was. Ritalin helps with EDS but does not address its underlying cause, sleep quality, which is why many people end up taking two different medications to treat both of these main symptoms. Last summer I participated in a trial run of a new drug called Xyrem (sodium oxybate), and I felt like a person again. Having narcolepsy essentially means having long-term sleep deprivation, and until that point I had been sleepwalking through life weighed down by brain fog, unable to make it through a day without several, sometimes multiple-hour-long naps. Each morning I set alarms for every three minutes between 9 am and 11 am and snoozed them all, over and over, for two hours, sometimes three. I was proud if I could read for 15 minutes without napping. I fell asleep in seconds, constantly, all day. Some days, analytical thought was beyond my capability—I was unable to stay awake, let alone focus enough to comprehend what I was reading, let alone reach the level of concentration required to develop and articulate an argument. I felt like my brain was dissolving.
With Xyrem, I felt like I could finally access my whole mind again. I could read again, I could think again, I could concentrate on my assignments, I could get out of bed before noon. I’m on different medications now: Modafinil instead of Ritalin and Zopiclone instead of Xyrem. Like Ritalin, Modafinil is a stimulant, but a lot of narcoleptics find it less harsh. Ritalin doses chopped my days into jagged alertness highs and crashes that left me disoriented. Modafinil feels less intense, more natural.
We still don’t know what causes narcolepsy. One theory suggests genetic origins: in Israel, only 0.2 out of 100,000 people are narcoleptics, but in Japan, rates of narcolepsy reach 590 per 100,000 people. The latest research involves autoimmune connections: narcoleptics have fewer orexin-producing cells, a neuropeptide that regulates sleep cycles. These lower levels are potentially caused by a viral infection that tricks the brain into attacking its own allies. It is also possible that these cells could sustain damage through head injuries. At this point in time, we don’t know how to restore lost orexin, but ongoing research is exploring narcolepsy as it relates to diabetes (diabetic immune systems attack insulin-producing cells) and opioid addiction (opiates increase levels of orexin-producing cells).
It may have taken an incurable condition for me to finally learn to appreciate science, but I am so grateful for the people who devote their lives to exploring spaces in the world that overwhelm me.
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