Narcolepsy

Narcolepsy is a sleep disorder that causes extreme daytime sleepiness and sudden “sleep attacks,” where you fall asleep without warning. These can happen at any time, even during regular activities. It affects your brain’s ability to control when you fall asleep and wake up.

The condition can disrupt your daily life, making it harder to work, study or keep relationships. It may also cause symptoms like sudden muscle weakness, vivid dreams or sleep paralysis.

Narcolepsy is uncommon. But it’s a manageable lifelong condition. A healthcare provider can help you find the right treatment and support.

Types of narcolepsy

There are two main types:

• Narcolepsy type 1: This type causes sudden muscle weakness (cataplexy) and/or very low levels of a brain chemical called hypocretin/orexin (helps control wakefulness and REM sleep).
• Narcolepsy type 2: This type causes daytime sleepiness like type 1, but without cataplexy. Hypocretin/orexin levels are usually normal.

A separate condition called secondary narcolepsy can happen due to a brain injury, lesion, or other medical or genetic disorder. It often comes with more severe symptoms and longer sleep times.

Narcolepsy symptoms

Narcolepsy can feel different for everyone. You may not have all the symptoms listed here. Common ones include:

• Excessive daytime sleepiness: Feeling very sleepy during the day or suddenly falling asleep without warning
• Cataplexy: Sudden muscle weakness, triggered by strong emotion, which can make you drop things or fall
• Hallucinations: Seeing or hearing things that aren’t really there as you drift into or out of sleep
• Sleep paralysis: Not being able to move or speak for a short time when falling asleep or waking up
• Automatic behaviors: Doing things like walking while half asleep and not remembering it later
• Poor nighttime sleep: Waking up often or not sleeping deeply, even if you fall asleep easily

What causes narcolepsy?

Narcolepsy type 1 happens when your brain loses cells that make a chemical called hypocretin/orexin. This chemical helps control when you’re awake and when you sleep. The loss of these cells happens in a part of your brain called the hypothalamus. It regulates your sleep-wake cycle. Experts believe this loss happens because your immune system mistakenly attacks and destroys the cells that make hypocretin/orexin.

The cause of narcolepsy type 2 is unknown.

Secondary narcolepsy may be due to:

• Brain injury
• Trauma
• Tumor
• Stroke
• Brain inflammation
• Genetic or medical condition

Sometimes, doctors can’t find a clear cause.

Is narcolepsy genetic?

Narcolepsy type 1 can have a genetic link. Healthcare providers found that certain genes that control your immune system relate to this condition. One is the HLA DQB1*0602 allele, although many people have this allele and don’t have narcolepsy. Narcolepsy type 1 rarely runs in families.

Type 2 narcolepsy doesn’t have a strong genetic pattern.

Risk factors

Anyone can develop narcolepsy. Your risk is higher if you have:

• A biological family member with narcolepsy
• A specific gene marker (a small change in your DNA linked to certain health conditions), like HLA DQB1*0602
• A head injury or damage to your hypothalamus

What can trigger narcolepsy?

Triggers are things that can cause symptoms to start or get worse. Suspected but unproven triggers include:

• Head trauma
• Viral illness
• Prolonged sleep deprivation

Complications of narcolepsy

This condition can affect more than just your sleep. It may lead to:

• Acting out dreams (REM sleep behavior disorder)
• Depression or anxiety
• Involuntary leg movements during sleep
• Trouble thinking clearly
• Weight gain

Narcolepsy itself isn’t usually dangerous, but sudden sleep episodes or muscle weakness can lead to accidents or injuries. These risks are higher when driving, using machinery or doing activities like swimming or climbing.

How doctors diagnose narcolepsy

A healthcare provider will start by learning about your symptoms and sleep habits. Because other conditions can look similar, special sleep tests help confirm a diagnosis.

Before testing, your provider may have you track your sleep with a sleep diary and a wearable device called an actigraph.

Common tests include:

• Sleep study (polysomnogram): This records your brain waves, breathing and movements while you sleep to see how your body cycles through sleep stages.
• Multiple sleep latency test (MSLT): This test measures how quickly you fall asleep during short daytime naps.
• Spinal tap (lumbar puncture): This procedure looks for low levels of a brain chemical called hypocretin/orexin, which helps regulate sleep.

These tests help rule out other sleep disorders. Your provider will explain which tests you need and what to expect from each one.

How is narcolepsy treated?

There’s no cure for narcolepsy. But treatment can help you manage symptoms and improve daily life. Your healthcare provider may recommend:

• Medications: These may help you stay awake, sleep better at night and reduce other symptoms, like cataplexy.
• Routine changes: You can take regular naps, keep a consistent sleep schedule, avoid caffeine before bedtime and practice other good sleep habits.
• Safety precautions: Your provider may recommend that you avoid driving or using heavy machinery when you feel sleepy.
• Accommodations: Your provider may recommend extra support in school or your workplace.

Narcolepsy medications

Medicines are the main way to treat narcolepsy. Common types include:

• Wake-promoting medications: Drugs like modafinil and armodafinil stimulate your nervous system to reduce daytime sleepiness.
• Stimulants: Medicines like methylphenidate or amphetamine/dextroamphetamine may improve alertness and focus.
• Antidepressants: These may include SNRIs like venlafaxine, SSRIs like fluoxetine, or tricyclic antidepressants like clomipramine or protriptyline. Atomoxetine, used for ADHD, may also help reduce sudden muscle weakness.
• Oxybates: This medication improves nighttime sleep, improves daytime sleepiness and reduces cataplexy episodes.
• Histamine-affecting drugs: Pitolisant helps your brain keep you awake and can reduce cataplexy episodes
• Dopamine norepinephrine reuptake inhibitors: Solriamfetol helps keep you awake during the day.

Getting the right treatment can take time, but your healthcare provider will work with you to find the right balance.

When should I see my healthcare provider?

See a healthcare provider if you often fall asleep during the day without meaning to. This is especially important if you’re sleeping well at night but still feel very tired during the day.

Let your provider know if you also have symptoms like sleep paralysis, sudden muscle weakness or vivid dreams or hallucinations when falling asleep or waking up.

If you’re already getting treatment, call your provider if symptoms get worse or if you have side effects from a medication.

Seek emergency help if you hurt yourself after falling asleep during an activity, like driving.

What’s the outlook for narcolepsy?

Without treatment, narcolepsy can have a big impact on your daily life. It can make it hard to work, go to school or take part in everyday activities.

The condition itself isn’t life-threatening. But it can affect your safety if you fall asleep during tasks that need your full attention.

With the right treatment and ongoing care, most people manage their symptoms well. A healthcare provider can help you build a plan that supports your safety and well-being over time.