Understanding Narcolepsy: Signs, Symptoms, Treatment

Narcolepsy is a relatively rare sleep disorder that causes people to fall asleep, or experience drowsiness, during the daytime. While it affects an estimated one in 2,000 people, only 25% of those people have received a diagnosis and treatment. Research indicates that between 125,000 and 200,000 people in the United States have this sleep disorder, though experts are also quick to indicate that this figure could be much higher.

Let’s explore narcolepsy — what it is, the symptoms it might cause, and how Americans are overcoming narcolepsy on a daily basis to uphold a high quality of life.

What is narcolepsy?

Narcolepsy is a chronic sleep disorder that makes you feel drowsy during the day. Among other symptoms, it causes excessive daytime sleepiness (EDS) — drowsiness during wake hours that affects an estimated 20% of the population.

Here are a few other symptoms narcolepsy can cause:

• Cataplexy: A sudden loss of muscle tone, ranging from mild muscle weakness to complete muscular collapse.
• Sleep paralysis: The temporary inability to move or speak as you fall asleep or wake up.
• Sleep attacks: Suddenly falling asleep during daytime activity.

Other common narcolepsy symptoms include hallucinations, headaches, anxiety, depression, and memory issues.

What causes narcolepsy?

Narcolepsy is a neurological disorder that can affect your ability to regulate your circadian rhythm. While doctors don't know exactly what causes narcolepsy, they also point out that it might have more than one cause.

One common factor among people with narcolepsy is a low level of hypocretin — a neuropeptide made in your brain that helps regulate your appetite and wakefulness. This lack of hypocretin is sometimes thought to be due to an autoimmune condition. Narcolepsy also has a genetic component, with specific genes affecting your ability to regulate your sleep-wake cycle.

How is narcolepsy diagnosed?

Diagnosing narcolepsy can be a challenge. Many of the symptoms you might experience from narcolepsy, both primary and mental health symptoms, are also present in other sleep disorders. For example, both insomnia and narcolepsy can cause daytime tiredness.

If you suspect you might have narcolepsy, it’s important not to self-diagnose. Instead, connect with a licensed medical professional you trust to provide a diagnosis and treatment options.

Doctors typically rely on a combination of clinical evaluation and sleep-specific tests to confirm a narcolepsy diagnosis. These exams usually include polysomnography, a study that analyzes how your body performs while you sleep. They might also use multiple sleep latency testing (MSLT), which gauges how quickly your body falls asleep through a series of short daytime naps.

How is narcolepsy treated?

While there is no cure for narcolepsy, several effective treatment options can help you manage symptoms and uphold a strong quality of life. These treatment options typically include a combination of medication, behavioral therapy, lifestyle changes, and community support.

After consultation, your doctor will tailor treatment options to meet your specific needs. Here are a few ways doctors typically treat narcolepsy:

• Medication: Stimulants like modafinil and methylphenidate can help directly combat daytime drowsiness. In other cases, antidepressants like selective serotonin reuptake inhibitors (SSRIs) and serotonin norepinephrine reuptake inhibitors (SNRIs) are used specifically to address cataplexy and other symptoms.
• Behavioral therapy: Cognitive-behavioral therapy (CBT) and various sleep hygiene education strategies can help people with narcolepsy take greater accountability for their own sleep challenges.
• Support: Narcolepsy isn’t something you need to manage by yourself. Support groups and counseling can provide valuable emotional support for people living with any sleep disorder.

Lifestyle changes are likely in order for anyone facing narcolepsy. This often means shifting your diet, improving the regularity of your exercise, and reducing caffeine intake to make your sleep condition easier to manage. It’s also important to optimize your bedroom environment, setting a comfortable sleep temperature and dimming lights when it’s time for sleep. Avoid using your phone for at least 60 minutes before bed.

You can also optimize your sleep environment by upgrading the quality of your sleep materials. This means choosing pillows, blankets, and other sleep accessories that make you look forward to the evening’s rest. It also means choosing a high-quality mattress that appropriately supports your limbs, neck, and back — limiting nighttime movements and holding your body comfortably in place until morning.

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