Narcolepsy Frequently Asked Questions
Thousands of people are living with narcolepsy. Whether you have narcolepsy or know someone who does, here is a guide to the basics.
What is narcolepsy?
Narcolepsy is a rare sleep disorder in which the brain fails to control sleep-wake cycles. It causes the person to feel very sleepy during the day and wake up often during the night. There is no cure for narcolepsy.
What are the types of narcolepsy
There are 2 main types of narcolepsy:1
- Type 1 narcolepsy, which used to be called narcolepsy with cataplexy. Most people with type 1 narcolepsy have low levels of the brain hormone hypocretin. Cataplexy is usually triggered by strong emotions such as surprise, fear, or laughter.
- Type 2 narcolepsy, which used to be called narcolepsy without cataplexy. Most people with this type of narcolepsy have normal levels of hypocretin.
Who gets narcolepsy?
Between 135,000 and 200,000 people in the U.S. have narcolepsy. However, since many people are undiagnosed, these numbers may be much higher. Narcolepsy is often incorrectly diagnosed as a mental health condition or seizure disorder. It is equally common in men and women.1,2
What causes narcolepsy?
Doctors believe that most cases of type 1 narcolepsy are caused by a combination of genetics and the environment. It is now considered to be an autoimmune disease. Doctors do not know exactly what causes type 2 narcolepsy, or narcolepsy without cataplexy.3
What are symptoms of narcolepsy?
The most common symptoms of narcolepsy are excessive daytime sleepiness, cataplexy, sleep paralysis, and hallucinations. Sometimes symptoms improve over time but rarely disappear completely. Cataplexy occurs in almost no other diseases. Other symptoms include insomnia, fragmented sleep, and automatic behaviors.1
How is narcolepsy diagnosed?
A physical exam, medical history, and several tests are used to diagnose narcolepsy. First, your doctor will look at your overall health and sleep habits to help rule out any other conditions that may cause similar symptoms. Two tests will likely be done in a sleep disorders clinic to diagnose narcolepsy:1
- Polysomnography (PSG or sleep study): An overnight test in a sleep lab that records brain and muscle activity, breathing, and eye movements.
- Multiple sleep latency test (MSLT): Measures how quickly someone falls asleep and when and if they enter REM sleep. Going into REM sleep within 15 minutes on two naps is consistent with narcolepsy.
How is narcolepsy treated?
There is no cure for narcolepsy but symptoms can be controlled with medicine and lifestyle changes. Short, daytime naps can improve alertness and maintaining good sleep habits can help improve symptoms overall. Prescriptions medications such as stimulants, antidepressants, and sodium oxybate can help control symptoms. People being treated for narcolepsy should see their doctor at least every 6 months. It is important to watch for drug side effects, changes in sleep or mood, and other health issues.4
How can I manage life with narcolepsy?
Living with narcolepsy can disrupt many aspects of daily life. The daytime sleepiness can interfere with relationships, school, work, and hobbies. Confronting stigma and misunderstanding about what narcolepsy is can also take an emotional toll. The good news is that there are a variety of ways to live successfully with narcolepsy and many places to find support, including here in our community.
What is the hardest part of coping with narcolepsy?