5 Signs Your Sleepiness Could Be Narcolepsy

It can be a scary feeling to suddenly have a strong urge to fall asleep when you know you’re supposed to be awake. This is often what happens to people with narcolepsy. Narcolepsy is a rare sleep disorder that breaks up the body’s sleep-wake cycles. And it can cause people to fall asleep at irregular times. 

Narcolepsy usually starts sometime in late childhood to early adulthood. And it lasts throughout a person’s entire life. Although no cure is available for narcolepsy, there are treatments and lifestyle changes that can help you lead a more normal life. Here’s more about the signs, causes, and treatments of this rare sleep disorder.

What are the signs and symptoms of narcolepsy?

The most common symptom of narcolepsy is sleepiness. But there are many other symptoms as well. Let’s review the five most common signs and symptoms of narcolepsy.

1. Excessive daytime sleepiness (EDS)

EDS is more than just feeling a little tired after a long night. People with narcolepsy may feel sudden, overwhelming sleepiness that happens several times a day. This is often regardless of how much sleep from the night before. 

Between episodes, people with narcolepsy may have normal attention and wakefulness. At night, they may even have trouble falling asleep (insomnia) or wake up frequently despite being very tired.

2. Cataplexy

Cataplexy is the sudden loss of muscle tone and strength, especially in emotional situations. It’s usually linked to positive emotions over negative emotions. And laughter is a common trigger. Symptoms can range from drooping eyelids in mild cases to complete collapse in severe cases. Cataplexy can be dangerous and may result in falls and injury.

Cataplexy is a strong sign of narcolepsy. In fact, up to 70% of people with narcolepsy also have cataplexy. 

3. Sleep paralysis

Similar to cataplexy, sleep paralysis can cause you to lose control of voluntary muscle movement. As you fall asleep or wake up, you may be unable to move or speak for usually a few seconds. It can be scary, but you still are completely aware of what’s going on around you. 

4. Hallucinations

Vivid hallucinations are common with narcolepsy. This is where you may sense things that aren’t real. For example, this means you may see, hear, or smell things that don’t actually exist. Hallucinations can happen as you fall asleep or wake up. With narcolepsy, they are often visual. But hallucinations can happen with the other senses, as well.

5. Automatic behaviors

If you have narcolepsy, you may fall asleep for some time and not be aware of what you are doing. And you could be engaged in behaviors such as driving or typing, and might wake up feeling frightened. That’s a natural response and occurs because you may not know how you've gotten where you are, where you’ve put something, or what you’ve done.

If you’ve had any of these experiences, let your healthcare provider know. Your provider can provide tests to check for narcolepsy and other sleep or neurological disorders. 

What causes narcolepsy?

The cause of narcolepsy is still largely unknown. But experts have some theories as to the cause depending on which type you have. Narcolepsy can be divided into two main types: Type 1 (narcolepsy with cataplexy) and Type 2 (narcolepsy without cataplexy). This is based largely on symptoms and an underlying cause if known.

In Type 1 narcolepsy, nerve cells in an area of the brain called the hypothalamus die off. These nerve cells usually make a neurotransmitter (hypocretin) that helps control sleep-wake cycles. In people with Type 1 narcolepsy, hypocretin levels are low. 

There is also evidence that Type 1 narcolepsy may be due to an autoimmune disorder. The immune system may mistakenly attack the neurons in the brain responsible for making hypocretin.

The cause of Type 2 narcolepsy is not known. Some suspected causes from research include genetics, brain trauma, or infection.

How is narcolepsy diagnosed?

A sleep study is an important step toward diagnosing narcolepsy. An overnight sleep study and multiple sleep latency tests are used to understand:

• How quickly you fall asleep

• How long it takes to start REM (rapid eye movement) sleep

• If there are signs of other sleeping disorders

Narcolepsy will cause someone to suddenly fall asleep. And it will lead to earlier than expected REM activity.

A lumbar puncture (spinal tap) may also help diagnose narcolepsy. It is used to test the hypocretin level in the cerebrospinal fluid (CSF) that protects the spinal cord. Hypocretin in the CSF can sometimes be low if you have narcolepsy. 

If you think you may have narcolepsy, it’s important to see a healthcare professional right away. Narcolepsy is considered a rare disorder. But many experts say it may be underdiagnosed. Research shows that more than 80% of people with narcolepsy have symptoms for more than a year before getting their diagnosis.

Can narcolepsy be treated?

There are several medications available to treat narcolepsy. The most common treatment targets specific symptoms.

EDS symptoms are usually treated with central nervous system (CNS) stimulants. Or your provider may prescribe medications to help you stay awake. These can include medications like: 

• Dextroamphetamine/amphetamine (Adderall IR)

• Methylphenidate (Ritalin)

• Modafinil (Provigil)

• Armodafinil (Nuvigil)

• Sunosi

On the other hand, cataplexy is typically treated with medications that are CNS depressants. Or your provider may prescribe medications that increase histamine activity in the brain. It’s not completely understood how these help with narcolepsy. But research has shown them to be effective because they help with wakefulness. 

Medications for cataplexy can include:

• Sodium oxybate (Xyrem)

• Xywav

• Wakix

Changes in your lifestyle are also important to keep you from getting hurt. This could include not driving or doing other activities that might put you at risk if you suddenly got very sleepy.

What should you do if you think you have narcolepsy?

If you think you might have narcolepsy, you should see your provider. They can request the correct sleep studies and help you decide if further testing is needed. If a person is left undiagnosed and/or untreated for narcolepsy, they may be at increased risk of serious injury. 

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Written by:

Frank Schwalbe, MD

Frank Schwalbe, MD, is an assistant professor of anesthesiology at the Yale School of Medicine. He has practiced anesthesiology for 30 years.

Edited by:

Karla Robinson, MD

Karla Robinson, MD, is a medical editor for GoodRx. She is a licensed, board-certified family physician with almost 20 years of experience in health through varied clinical, administrative, and educational roles.

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