Narcolepsy Narcolepsy

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A common symptom of narcolepsy is suddenly feeling very sleepy during the day. This is called a sleep attack. People with narcolepsy also wake up often at night. Other common symptoms are  hallucinations  and sleep paralysis, which occur when falling asleep or waking up.

There are two types of narcolepsy:

• Type 1 narcolepsy involves a sudden loss of control over muscles, called cataplexy. Emotions such as laughter, fear, anger, stress, or excitement may trigger cataplexy.
• Type 2 narcolepsy does not have cataplexy as a symptom.

People with cataplexy have low levels of a neurotransmitter called hypocretin/orexin, which helps you stay awake. You may have low levels of hypocretin/orexin if disease or injury damage the area of the brain that produces the neurotransmitter.

Your family history or environment can also raise your risk of narcolepsy. For example, the gene HLA-DQB1*06:02 has been linked to narcolepsy.

Half of people with narcolepsy never receive a diagnosis. Even when they do, their diagnosis may happen years after the symptoms appear.

To diagnose narcolepsy, your healthcare provider will ask about your medical and family history, do a physical exam, and recommend the following tests:

• Multiple sleep latency tests are used to diagnose type 1 narcolepsy by measuring how quickly you fall asleep
• The Epworth Sleepiness Scale measures daytime sleepiness
• Sleep studies help to understand the severity of daytime sleepiness
• A hypocretin test measures your hypocretin level to determine if you have cataplexy

Up to 33% of people with narcolepsy also have sleep apnea. However, narcolepsy can be diagnosed only after a person has been treated for sleep apnea by a continuous positive airway pressure machine.

BROCHURE

Sleep Diary

Print and use this sleep diary to record your sleep and daytime habits that may affect your sleep. 

Download the diary

You can help manage your narcolepsy by adopting healthy sleep habits and lifestyle changes. These include going to bed at the same time each night, getting up at the same time each morning, and taking scheduled daytime naps. Avoiding alcohol and medicines that worsen daytime sleepiness may also help you feel less sleepy during the day.

Your provider may prescribe medicines to:

• Help you stay awake during the day
• Treat excessive daytime sleepiness and cataplexy
• Improve nighttime sleep

Your provider may prescribe antidepressants to treat cataplexy and other narcolepsy symptoms.

People with narcolepsy often have other sleep-related problems as well. Your provider may want to treat those problems first.

Obesity is common in people with narcolepsy. Your provider can discuss ways to maintain a healthy weight as part of a narcolepsy treatment plan. Daily exercise is one of several tips for living with narcolepsy. Cataplexy can cause depression and suicidal thoughts. If you experience any of these conditions, you may want to discuss ways to manage them with your provider. Both conditions improve with cataplexy treatment.

Even with treatment, people who have narcolepsy may still have daytime sleepiness. Taking short naps during the day and avoiding heavy meals, smoking, and caffeine at bedtime may help you maintain a healthy sleep schedule. Talk with your provider about safety issues, including the risk of car accidents. Therapy, education, and counseling may also help you manage your symptoms. Learn more about the importance of sleep and how sleep works.

If you are considering becoming pregnant and have obesity, anemia, or hypertension, ask your provider about finding out if you have narcolepsy. Narcolepsy may increase the risk of these conditions in pregnant women and new mothers. Your provider can help you develop a plan to ensure the best outcomes for you and your child.

Doctors may diagnose cataplexy late in children because their symptoms are similar to other disorders, such as epilepsy or syncope. However, half of people with narcolepsy have symptoms before they reach 18 years old.

If you notice that your child’s face suddenly goes slack, their eyelids droop, or their tongue sticks out, they may have “cataplectic facies.” This symptom is unique to children with narcolepsy.