Asleep by day, awake at night: The effects of narcolepsy

Emily Whitehurst

Have you ever wondered what it feels like to be in a endless loop of sleepiness throughout the day only to not fall asleep at night? This is the case for people who have narcolepsy, which is defined by the National Institute of Neurological Disorders and Stroke as “a chronic neurological disorder that affects the brain’s ability to control sleep-wake cycles.” People who have narcolepsy including the author of this article, experience symptoms of sleepiness or drowsiness throughout their day, sleep attacks, not being able to sleep at night, cataplexy, and much more. Although when it comes to cataplexy, it is only experienced with type one narcolepsy. Type two narcolepsy on the other hand does not experience cataplexy.
Although it is possible for someone with type two narcolepsy to develop cataplexy later on. Both Narcolepsy and cataplexy can improve through medication. Although people can still experience their symptoms to a lesser degree even when on medication. When symptoms of narcolepsy first appear they’re often expressed throughout the narcolepsy community as having trouble sleeping at night and being very tired or falling asleep through the daytime. This is called EDS (excessive daytime sleepiness) which is explained by the Sleep Foundation as, “difficulty staying awake or alert, or and increased desire to sleep during day.”
They also add that “sleepiness may be stronger when you are sedentary, such as while driving or sitting at work.” The author of this article has experience with EDS and can express that it mostly happens when sitting or lying somewhere no matter what I’m doing. I could be playing a heavy focus game and still be hit with a sudden urge to fall asleep. Sleep attacks are similar to the symptoms of EDS but are more extreme. They are described by the NHS as “where you fall asleep suddenly and without warning”
I, the author, experienced many sleep attacks during middle school and high school. I would fall asleep and wake up being so confused on when I did only to fall back asleep once more in grade six and seven. During my years in high school when I was put on medication for my narcolepsy in grade nine, I still experienced sleep attacks. Although in the present day, I rarely have sleep attacks. At night on the other hand, it’s a different story.
People with Narcolepsy experience the trouble of falling asleep. This is cause by sleep disruptions which the National Institute of Neurological Disorders and Stroke list as “insomnia, vivid dreaming, sleep apnea, acting out while dreaming, and periodic leg movement.” Nina Manz who experiences type two narcolepsy expressed, “in my very early teens I would get up multiple times in the middle of the night and go back and forth to the kitchen to eat and I was doing this in a state of being awake and asleep. It was like I wasn’t really awake, I wasn’t really asleep, I had no control on what I was doing, and I’ve been doing that my inter life.” She goes onto explain that “this can be a part of their sleep disturbance.”
This type of sleep disturbance deals with automatic behaviors, which is described by the National Institute of Neurological Disorders and Stroke as “a person falls asleep during an activity and continues the activity for a few seconds or minutes without conscious awareness.” Which can be very dangerous and put the person at risk as Maz brings up talking with other narcoleptics that “burn themselves and burned their house down” while sleeping. Cataplexy defined by the National Institute of Neurological Disorders and Stroke as “sudden loss of muscle tone while a person is awake leads to weakness and loss of voluntary muscle control.” They go onto explained this can happen through “sudden strong emotions such as laughter, fear, anger, stress, or excitement.” An anonymous person who has type one narcolepsy experienced this and expressed that “my knees and legs would buckle if I laughed sometimes.”
Cataplexy can also be much more than certain parts of the body giving out, it can actually affect the whole body itself. This is called a Cataplexy attack which is when cataplexy affects the inter body rather than certain parts of it. I’ve had times where I would fall onto the floor and could not move, speak, and keep my eyes open all at once. The anonymous person also expressed “falling to the ground” due to this cataplexy too.
With all this information I, the author of this article who has type one narcolepsy, hope you become more aware of narcolepsy and its effects on people. I grew up and delt with many issues not just from narcolepsy itself but from people who had a lack of knowledge about it. I had unreliable doctors (one thought I had Asthma), teachers slamming books to wake me up, kids slamming their hands onto my desk, and much more. Which is also commonly experienced by people who have narcolepsy although in different situations other than mine. So, my advice to anyone one of you who made it to the end of this article.
If you have or see someone you know experiencing these types of symptoms I talked about, seek out a sleep study as it’s better to know sooner than later if you do have narcolepsy.