Understanding Narcolepsy: Diagnosis and Treatment

Narcoleptic sleeping on desk

Have you ever encountered someone in your life who needed to take naps at inconvenient times throughout the day? And by “needed to,” we mean with narcolepsy they better have had a couch or soft surface in the building, and driving would be downright reckless.

You might think they were just a sleepy person, or even that they lacked the motivation to stay awake the whole day. But another possibility is that they suffer from narcolepsy—they couldn’t help it.  They most likely have a sleeping disorder called narcolepsy.

What Is Narcolepsy?

Narcolepsy is a disorder that affects a person’s sleep and wake cycles. Most people associate it with excessive daytime sleepiness (EDS), which is its hallmark symptom. Unlike other disorders like hypersomnolence, the sleepiness from narcolepsy often has a sudden onset.

Many people with narcolepsy struggle to get to sleep during the night as well, or they might wake up multiple times in the same night. The issue here isn’t just excess sleepiness but an impaired ability to sleep and be awake at the appropriate times.

Well, what are the “appropriate times” to sleep and be awake? Lots of people enjoy night shifts or other irregular sleep schedules—does that make them narcoleptic?

Not necessarily. To make it clearer, people with narcolepsy experience a lack of control over the sleep-wake cycle. This is different from someone who likes to stay up and sleep in.

What Are the Signs of Narcolepsy?

Narcolepsy symptoms often start in childhood or young adulthood. Because these signs are easily confused with normal sleepiness or trouble sleeping, many people never realize that what they have is narcolepsy.

Excessive Daytime Sleepiness

Woman with narcolepsy.Like we said earlier, excessive daytime sleepiness is one of the most noticeable and common symptoms of narcolepsy. For many people who have the disorder, this symptom was their first clue that something was up.

It might be hard to know the difference between EDS and needing to nap due to over-exertion or staying up late.

For a professional opinion, you should talk to a doctor. But in the meantime, you could also see how you score on the Epworth Sleepiness Scale or the ESS. This is a questionnaire that considers your sleepiness in a variety of situations.

If your sleepiness extends to frequent situations where you fall asleep in the middle of a sentence or while eating, ask a doctor whether you could have narcolepsy.

Cataplexy

Cataplexy is a sudden loss of muscle tone or inability to move. Some people fall down, while others drop their heads.

It is often one of the more dramatic symptoms to witness, and it can happen from unexpected triggers, like laughter. Some people experience cataplexy when feeling strong emotions, such as embarrassment or anger.

Cataplexy doesn’t occur in all cases of narcolepsy. Its presence or absence can help people determine which type of narcolepsy they have.

Sleep Paralysis

This is something you or someone you know might experience even if they don’t have narcolepsy.

During a normal night of sleep, someone could have vivid dreams of running, jumping, and moving around. Mentally, it could feel like they are really doing all of these things, but you wouldn’t be able to tell from looking at them. Their bodies stay stationary.

Of course, some people sleepwalk. This is a failure of the body to restrict motion during sleep. You can think of sleep paralysis as sort of the opposite.

People who experience sleep paralysis describe waking up and being unable to move. They might feel fully awake, and some are able to open their eyes at least and view their surroundings, but their bodies stay in a sleeping position.

In most cases, sleep paralysis doesn’t go on for very long. It can be a matter of seconds and usually doesn’t last longer than several minutes per episode. So you might think it’s not a big deal to wait it out.

But sleep paralysis often comes with disconcerting feelings of fear and even hallucinations.

Hallucinations

This, either alone or with sleep paralysis, can be one of the most difficult narcolepsy symptoms. People who experience hallucinations when waking up from sleep might see the hallucination as a continuation of the dream, mixed with the awareness that they are awake.

Some people with narcolepsy experience hallucinations when going to sleep rather than waking up. Either way, these hallucinations can be very distressing. Many people who have them report seeing shadowy figures or other intruders in the room.

If you suffer from vivid nightmares that can sometimes extend into the period just before or after sleep, it could be more than just a bad dream. This is one of the possible symptoms of narcolepsy.

What Kind of Narcolepsy Can You Have?

Doctors have identified two types of narcolepsy, and one of these is linked to a specific cause. Knowing which type you have can help you choose the best treatment option to manage your symptoms.

Narcolepsy on TabletType 1

Type 1 narcolepsy is sometimes called “narcolepsy with cataplexy,” but you don’t need to exhibit cataplexy to be diagnosed with it.

This type is more common than the other, and experts link it to low protein levels called orexin or hypocretin.

Type 2

“Narcolepsy without cataplexy,” or type 2 narcolepsy, doesn’t have the hypocretin link that type 1 narcolepsy does.

People with type 2 narcolepsy often have hypocretin levels that align with normal expectations.

What Are the Options for Narcolepsy Treatment?

People who have narcolepsy can use a variety of methods to treat their condition. There is currently no cure for narcolepsy, but these methods can help patients manage the symptoms.

For example, if excessive daytime sleepiness prevents a narcolepsy patient from holding down a steady job, a daily stimulant can help them stay awake. And for those who are worried about the dangers of falling asleep suddenly, they can make some lifestyle adjustments to account for this knowledge about themselves.

SSRIs

SSRIs, or Selective Serotonin Reuptake Inhibitors, are a common type of medication used for a variety of mental disorders. These work to increase serotonin activity, a neurotransmitter that’s sometimes called the “happy chemical.”

Serotonin indeed contributes to well being and mood stability, but narcolepsy researchers also emphasize its role in the maintaining threshold between sleep and wakefulness.

Stimulants

Because many people with narcolepsy seek help specifically for staying awake during the day, stimulants in the daytime are a common narcolepsy treatment.

For some, this comes in the form of everyday caffeine drinks, like coffee. But others make a point to avoid coffee, either because it doesn’t work for them and only gives them jitters or because it actually interferes further with their sleep-wake cycles.

Other stimulants come in the form of medication, like modafinil and armodafinil. These are called wakefulness-promoting agents, and patients can take them during the day to help with work schedules and daily activities.

Lifestyle Adjustments

If you have narcolepsy, this is something you’ll likely have to do whether or not you also use other treatments.

Students with narcolepsy can benefit from classroom accommodations that account for their unique scheduling needs. In fact, if the school refuses to accommodate, you can bring this up as a violation of anti-discrimination regulations. 

Some people with narcolepsy don’t drive, while others carefully manage their sleepiness patterns and only drive when they’re not having an episode. And some manage their sleep, scheduled naps throughout the day, and take extra care to improve their sleep environment at night.

How Can a Good Sleep Environment Help?
Bedding from the Beloit Mattress Company

Just because narcolepsy is known for the sleepiness aspect doesn’t mean people with narcolepsy actually get an adequate quality—or even amount—of sleep. The daytime symptoms might be the most visible, but many narcolepsy patients suffer from disruptions in sleep during the night.

Sleep health is something that helps many narcolepsy patients gain more control in their lives. This can include a whole routine geared toward a good night’s sleep, from avoiding large meals at night to removing electronics in the bedroom.

And if you or someone you know has narcolepsy, you might be pleasantly surprised at the difference a high-quality bed and bedding set up can make.

For example, a mattress that’s firm enough to support your spine’s natural curves can help prevent you from instances of discomfort or aches in the middle of the night. And an adjustable base can help you get the perfect sleep angle.

Take Control of Your Sleep

If you recognize any of the common signs of narcolepsy, you should know that a narcolepsy diagnosis won’t limit your options. In fact, it can give you the knowledge you need to improve your day-to-day life.

And most importantly, a diagnosis of narcolepsy can reassure you that your symptoms aren’t a motivation problem. They’re just an effect of disordered sleep.

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