HomeNarcolepsyDebunking 6 Myths About Narcolepsy with Cataplexy

Debunking 6 Myths About Narcolepsy with Cataplexy

When I was diagnosed with narcolepsy, I quickly learned that “tired” and “sleepy” were completely different terms. “Tired” is what you might feel like after a long day, whereas “sleepy” is an almost-constant state of being, regardless of how much rest you’ve had.

If you are a fellow sleepyhead who simply cannot manage your own daytime fatigue and frustrating sleep cycles, you might have this condition as well. But how much do you actually know about narcolepsy? Let’s start by challenging some of the biggest misconceptions about this disorder.

1. Narcolepsy isn’t real.

Myth Narcolepsy isnt real

Ever see movies or TV shows where a character falls asleep at the drop of a hat? Or maybe you’ve come across news stories of people dozing at the wheel without realizing it. The portrayals of narcolepsy in the media are often exaggerated, which leaves many people thinking that this is a fictional disorder. However, that is far from the truth.

Narcolepsy is a neurological condition that affects hundreds of thousands of people in the United States. Unfortunately, this disorder is often challenging to diagnose because the symptoms mimic those of other conditions.

To confirm a diagnosis of narcolepsy, the patient will typically have an overnight sleep study in addition to a study called the multiple sleep latency test (MSLT). The MSLT study measures important criteria for narcolepsy, including how fast you fall asleep and if you quickly enter a dream state known as REM.

Excessive tiredness is one of the most common symptoms of narcolepsy, and this study can show on paper just how tired people with narcolepsy can feel. This goes to show that not only is narcolepsy a condition that is real, but it can also substantially affect people who have it.

2. There is only one type of narcolepsy.

two main types of narcolepsyThere are actually two main types of narcolepsy: narcolepsy without cataplexy and narcolepsy with cataplexy. Narcolepsy with cataplexy can affect your ability to control your muscles. Interestingly, these episodes of muscle weakness are usually triggered by strong emotions. Crying, laughing, and feeling surprised can all lead to a cataplexy attack.

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The distinction with cataplexy compared to seizures or other types of paralysis is that you stay entirely conscious during these episodes, but you aren’t able to move or speak. The severity of these attacks depend on the person. Some people only experience slight muscle weakness, whereas other people completely collapse because they’re unable to hold their bodies up. Sometimes, antidepressants and anxiety medications can work to manage the extreme swell of emotions that cause these attacks.

While these are the two main types of narcolepsy that can happen to anybody at any age, you can also develop narcolepsy after certain brain injuries. Remember, all narcolepsy patients are different and have varying symptoms.

3. You can’t drive if you have narcolepsy.

While some instances of narcolepsy leave people unable to drive out of safety concerns, this isn’t always the case. Many people are able to manage the symptoms of excessive sleepiness with the right medications as well as supplemental assistance like having a good sleep, diet, and exercise routine.

4. Sleeping helps you to feel refreshed.

Despite the extra naps and the long nights filled with dreams, people with narcolepsy frequently do not feel refreshed once they wake up. This is actually one of the most glaring signs of this disorder. Sleeping is supposed to help you feel energized and ready for the day ahead. But both types of narcolepsy quickly drain any energy that was stored while sleeping—and sometimes, the condition prevents any energy from being stored at all.

5. If you have narcolepsy, you sleep all the time.

Sleepiness is usually the defining characteristic of narcolepsy. However, narcolepsy can cause a lot of other sleep disturbances as well. In fact, people with narcolepsy often have periods of insomnia, which is the inability to sleep. Between sleeping all the time and not sleeping at all, narcolepsy brings a lot of ups and downs.

6. Sleepiness is the only symptom of narcolepsy.

symptoms of narcolepsyNarcolepsy (with and without cataplexy) affects people in so many different ways. In addition to uncontrollable sleepiness, some of the most common symptoms include:

  • Insomnia
  • Sleep paralysis
  • Vivid hallucinations
  • Sleep walking and doing other behaviors while sleeping
  • Brain fog
  • Memory loss

On top of all of these symptoms, narcolepsy can actually weaken your immune system, leaving you more susceptible to illnesses like colds, the flu, and even COVID-19.

This Is What It’s Really Like to Have Narcolepsy with Cataplexy

Before I was diagnosed with narcolepsy with cataplexy, I also believed all of the myths listed above. I thought that narcolepsy was something that happened to characters in books who had random fainting spells. But when I looked closer at my own symptoms, I realized that not everybody lived with such extreme fatigue—what I was going through was actually something more.

When you live with multiple disabilities that cause fatigue, it can be really challenging to figure out the source of your tiredness. Generally speaking, I am always sleepy, but sometimes that comes from joint fatigue, or my body’s refusal to process nutrients, or simply because my cats woke me up to feed them at the first sign of sunlight. But narcolepsy-level sleepy is a different story.

There are a lot of warning signs that clued me in that I might have a sleep disorder. In college, I couldn’t stop myself from falling asleep in my favorite classes. The line between reality and dreams started to blur in the mornings when I was absolutely, definitely positive I was awake and getting ready for the day but in reality, I was still in bed. I would have full conversations with my partner about a movie while actually sleeping through the entire thing. And my secret weapon (taking naps) stopped working to help get me through the day.

I was really lucky to have a doctor who was able to take stock of my symptoms and get me tested quickly for this condition. After the diagnosis, it was trial and error to find the right medication but once I found it, my life completely changed.

With the medication I take to help keep my narcolepsy at bay as well as anxiety management for the cataplexy, I am able to remember books that I read. I can sit through a funny movie without losing control of my neck muscles. I can take a nap that doesn’t last for five hours and actually be able to wake up.

These are all things that many people are able to do from day to day without really thinking about them. But if you have one of the types of narcolepsy, you understand how valuable it is to have even a few more hours—or just a minute more—to be awake and alert.

What questions do you have about narcolepsy?

Tell us in the comments section below!

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Aryanna Denk
Aryanna Denk is a disabled writer from Buffalo, NY. She holds an MFA in Fiction from Bowling Green State University, Ohio and writes often about her own experiences in living with multiple chronic illnesses. When she isn't writing, Aryanna is a writing instructor and disability advocate at a local university. Learn more about her by visiting her Twitter.

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