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#AlwaysSleepy: The Biggest Myths About Narcolepsy

Suddenly falling asleep mid-sentence, while driving or even passing out without warning is a common scene of comic relief in sitcoms, but for people living with narcolepsy in real life the condition is no laughing matter. The general insensitivity toward narcoleptics is likely due to not fully understanding what narcolepsy is…and believing what it is not.

“Narcolepsy effects people differently. So, everyone doesn’t manifest the same symptoms or even the same severity of symptoms,” Dr. Kyra Clark, a board-certified expert in sleep medicine and Medical Director of Sleep Diagnostics at Morehouse School of Medicine, told BlackDoctor.org.

It’s time to stop living in the fog about narcolepsy. Below we dispel some of the biggest narcolepsy myths.

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Myth: Narcolepsy is one-size-fits-all.  

Narcolepsy, a chronic sleep disorder, occurs in two forms: type 1 with cataplexy and type 2 without cataplexy. Cataplexy is “an episode in which strong emotion causes a sudden loss of muscle tone,” states the Narcolepsy Network. People may experience a sudden slack jack or buckled knees; a cataplexy attack may also have more severe effects like a full body collapse. However, not everyone who lives with narcolepsy experiences cataplexy.

Myth: Narcolepsy is a very rare condition. 

It may not be discussed often, but more people than you may think live with it every day. According to experts, it affects an estimated 1 in every 2,000 people in the United States. That’s 200,000 Americans, and approximately 3 million people worldwide. Unfortunately, only about 25 percent of sufferers have been diagnosed and are receiving treatment.

Myth: Narcolepsy is only about being sleepy all the time. 

Excessive daytime sleepiness (EDS), characterized by an uncontrollable urge to sleep (often at inappropriate times) is only one of the five major symptoms of narcolepsy. Aside from feeling #AlwaysSleepy, other major symptoms are:

  • Cataplexy – a weakening of muscle tone that may look like drooping eyes, jaw sag or buckling knees that is brought on by strong emotions like laughter
  • Sleep disruption – poor-quality sleep, where you fall asleep easily but have trouble staying asleep
  • Sleep paralysis – feeling unable to move or speak when waking up or falling asleep
  • Hypnagogic hallucinations – vivid dreamlike states, usually nightmares, when waking up or falling asleep

Dr. Clark makes clear that a narcolepsy diagnosis is not solely based on symptoms. “It also requires sleep testing to include polysomnography and multiple sleep latency tests,” said Clark. Before speaking with a specialist, take a simple quiz to learn more about your symptoms at FeelingTheFog.com.

Myth: Narcolepsy isn’t a big deal. 

Lots of people often feel tired, but narcolepsy is more than feeling tired; it is a real condition involving nerve cells and chemicals in the brain. Narcolepsy is a lifelong, chronic condition that not only comes with severe drowsiness, but also insomnia, temporary paralysis, brain fog, inability to focus, memory lapses, hallucinations, and even depression. Quality of sleep and of life are greatly compromised, making narcolepsy a frustrating and dangerous condition.

Myth: Narcoleptics just need more sleep. 

If someone is sleepy they should get more sleep, right? Unfortunately, it’s not that simple with narcolepsy.  Dr. Clark explained, “People just assume just getting more sleep can fix their problem but this disease is more than just daytime sleepiness. Narcolepsy causes a person’s sleep quality to be poor regardless of the amount of sleep that they obtain.”

Myth: People with narcolepsy sleep a lot. 

As much time people with narcolepsy spend not sleeping, people wrongly assume they are sleeping – maybe even sleeping excessively. They may nap more than the average person, but research shows that narcoleptics don’t sleep any more or less. It’s the quality of sleep that is the major difference, with narcoleptics experiencing more fragmented and unrestful sleep.

Myth: Only adults experience narcolepsy. 

Adults living with narcolepsy were once children living with narcolepsy (and my not have known it). According to Dr. Clark, symptoms typically begin to occur between the ages of 10 and 30 but can occur at any age. Nearly half of adult narcoleptics first noticed symptoms before 15 years of age. Narcolepsy may look different in children than in adults, such as being hyperactive instead of sleepy.

To learn more about narcolepsy, symptoms and treatment options, visit FeelingTheFog.com.

 

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