Fascinating Things About Narcolepsy Most People Don't Know

There are plenty of narcolepsy misconceptions floating around out there, but that doesn't make the condition any less troublesome. Narcolepsy can be insidious and seriously cripple a person's life in bad cases, and simply be a cumbersome but strange sleep phenomena in lighter cases. Some people out there may still be wondering what is narcolepsy? How does it happen, and what can be done about it? 

It's important to shake the misconception that narcolepsy is when people randomly fall into a deep sleep at sporadic times. This is not the norm for people with this condition, and can be harmful misinformation could prevent people who have narcolepsy from seeking help, because they don't believe they have it. Many people have narcolepsy, even celebrities. Most of the time, the symptoms are subtle ones, but they are still bothersome.

No matter how you look at it, what happens when you have narcolepsy is anything but fun. The search for a cure continues, but rest assured that there are treatment options out there.

Photo: nicolasnova / flickr / CC-BY-NC 2.0

  • What Is Narcolepsy?

    Narcolepsy is a chronic sleep disorder that is characterized by constant drowsiness or the persistent feeling of needing to sleep during the day time. People may also have sudden attacks of needing to sleep, or falling asleep uncontrollably (but not without warning). People who have narcolepsy frequently have issues staying awake for long periods of time, and have a sporadic sleep wake schedule compared to the rest of the world. A person with narcolepsy may require a very different routine than the average human, and may simply need to sleep at various intervals during the day, no matter what is going on around them.

    The condition was discovered way back in the 1600s, by an Oxford physician named Thomas Willis. Willis did not name or fully understand the cause of the condition, but he did note that some people were always sleepy or needed to sleep in an irregular pattern throughout the day. Later, in 1880, a French doctor named Gélineau called it a medical disorder, naming it "narcolepsie." When broken down, this word roughly translates to "sleep attack," a term that is still sometimes appropriate to narcoleptics even today.

  • There Are Two Main Types Of Narcolepsy

    Most people may know the basics of what narcolepsy is, but few actually know that there are two separate types of the disorder. Type 1 narcolepsy, formerly known as narcolepsy with cataplexy, happens when a person has low levels of of a hormone called hypocretin in their brain. Hypocretin is a neuropeptide that is in charge of the body's wakefulness, appetite, and arousal. These individuals may also experience sudden loss of their muscles, also due to the lack of hypocretin, and may collapse onto the ground or slump to the side in their seat. This is the most common type of narcolepsy.

    The other kind, Type 2 narcolepsy, happens when people experience constant sleepiness during the day time, but lack the muscle weakness that makes them collapse or lose control of their body. This type of narcolepsy tends to be less severe, and people who experience it have fairly normal levels of hypocretin in their brain. This is also more commonly linked to an injury to the brain that causes issues in regulating sleep. Some side effects of Type 2 narcolepsy can include more severe neurological issues. Both kinds are neurological disorders, and both levels of the condition can cause serious disruptions in a person's life.

  • There Are So Many Misconceptions About Narcolepsy

    The way narcolepsy has been portrayed in media has given power to a whole lot of myths about how narcolepsy really works. Narcolepsy is often portrayed as a harmless and merely annoying disorder, almost like a silly quirk of someone's personality. In reality, it can be incredibly damaging to a person's life. The other big misconception is that narcoleptics just fall asleep without any warning. While people with narcolepsy do suffer from sleep attacks, they will always have some degree of warning, and the majority of narcoleptics do not suffer from uncontrollable spontaneous sleeping.

    A more subtle difference between myth and reality is the idea that narcoleptics sleep all the time. In truth, narcoleptics sleep about the same amount as anyone else, it's just that their sleep wake schedule is broken up into smaller parts, and different than the average person. Just because someone naps a lot and gets sleepy at work does not make them a narcoleptic, and it's a disorder that should not be taken lightly. 

  • Narcolepsy Is Not As Rare As You Think

    Another common misconception about this condition is that it is a rare one. While it isn't as common as being left-handed, it's still a lot more common than people think. Symptoms initially begin in childhood or adolescence, with narcolepsy being diagnosed mostly between age seven and twenty five. It happens about equally in men and women, and happens all over the world. In the United States alone, it is estimated that right now 135,000 to 200,000  individuals live with narcolepsy. That means that roughly one in every two thousand people are diagnosed with the disorder.

    The bad news is this disorder is often undiagnosed or misdiagnosed, with symptoms being mistaken for other issues, such as seizures. The number of people affected by the disease may be much higher.

  • It's All Going On In Your Brain

    So, why does narcolepsy happen, and why does it impact people the way it does? To put it simply, it's all in your head. That's not to say you're imagining it! This disorder actually has everything to do with brain chemistry.

    For people with narcolepsy Type 1, their brain tends to have issues with a lack of hypocretin, a chemical which promotes feelings of being awake, as well as regulation of REM sleep. For Type 2, those levels may be normal, but part of the brain that has to do with sleep may be malfunctioning, or is damaged.  

    It is still not completely understood how narcolepsy happens, but we do know a few contributing causes. Autoimmune disorders can cause a loss of hypocretin, possibly because a person's body may be attacking the brain cells that contain and produce the hormone. Clusters of narcolepsy do sometimes pop up in families, indicating that there may be a genetic predisposition. Another possible cause of narcolepsy is a brain injury that can hinder the function that contributes to REM sleep and sleep wake cycles. This is rare, but it has been known to happen.

  • What Having Narcolepsy Feels Like

    So, what does it feel like to have narcolepsy? For one thing, every case of narcolepsy is slightly different, so no two people experience it the same way. One person may have severe symptoms while it flies under the radar for another person. But assuming you have a more "classic" case, we can imagine how everything might go. 

    All individuals with narcolepsy experience some form of excessive daytime sleepiness, or EDS. This symptom means that you will feel persistently sleepy while you are awake, no matter how much sleep you get during both the day and night. In some cases, this sleepiness might hit you all at once in an "attack." These attacks are not without warning, but they can be debilitating, because the feeling is overwhelming and can't really be stopped once it starts. When these attacks are not taking place, people with narcolepsy may seem normal, alert, and attentive. When the attacks or swells of sleepiness are happening, it can be hard to focus or even function.