Living With Narcolepsy

Narcolepsy shouldn’t stop you from living your life

Living with narcolepsy is difficult, and finding ways to manage your excessive daytime sleepiness (EDS) or cataplexy can be a challenge.

You are not alone

Everyone

with narcolepsy has EDS, the persistent feeling of tiredness

Nearly
2 out of 3

people with narcolepsy may also have cataplexy, the sudden onset of weak or paralyzed muscles

Approximately
165,000

people in the United States are living with narcolepsy

Types of narcolepsy

There are two types of narcolepsy: 
narcolepsy type 1 and narcolepsy type 2.

Narcolepsy with cataplexy is sometimes called narcolepsy type 1

Narcolepsy without cataplexy is sometimes called narcolepsy type 2

Living with excessive daytime sleepiness (EDS) can be different for each person:

  • People may fight to stay awake and alert throughout the day or fall asleep without warning

  • People may feel sleepy in situations that require no active participation, such as watching TV or riding in a car

  • Some people may wake up feeling somewhat refreshed but feel sleepy again in a few hours

Measuring your EDS

If EDS is still interfering with your life, you can use the Epworth Sleepiness Scale (ESS) to assess your level of daytime sleepiness. You can then share the results with your healthcare provider during your next discussion.

Download the scale

Cataplexy is usually brought on by strong emotions or certain situations. Living with cataplexy can be different for each person. It can cause people with narcolepsy to collapse completely, but more often affects specific areas of the body. Here are some examples:

  • Knees buckling

  • Hand weakness

  • Jaw sagging

People may use different words to describe their cataplexy, like:

  • Muscle weakness or heaviness
  • "Spells" of muscle weakness
  • Drooping of the head, face, or eyelids
  • Slurred speech
  • Going slack-jawed
  • Losing muscle control
  • Clumsiness
  • Loss of grip or dropping things

It's not always obvious to people that these experiences of cataplexy are related to narcolepsy.

Talk to your healthcare provider if you have experienced any of these signs of cataplexy. They can help you understand what it is and how to know if you might have cataplexy.

Understanding your cataplexy

If you have cataplexy or think you might have cataplexy, you can use these helpful questions to understand how cataplexy may be interfering with your life. You can then share the results with your healthcare provider during your next discussion.

Download questionnaire

Tips for living with narcolepsy

  • Keep a journal or diaryTracking your symptoms and sleep patterns can help you and your healthcare provider better understand your narcolepsy.

  • Avoid caffeine in the eveningAvoid coffee, tea, and other caffeinated beverages, especially in the evening.

  • Maintain a regular sleep-wake scheduleGo to bed at the same time every night and wake up at the same time every morning.

  • Limit alcoholAlcoholic drinks can interfere with normal sleep patterns.

  • Take short naps during the dayBrief morning or afternoon naps (about 15 minutes) may help you feel less sleepy later in the day.

  • Reduce stressJoin a wellness program or practice mindfulness by focusing on the present.

Keep these tips handy. 
Save them to refer back to later.

This information does not take the place of talking with your healthcare provider. Always talk to your healthcare provider about any symptoms you may be feeling.

Patient tips for living with narcolepsy

Tips for Living With Narcolepsy

Hear from other people living with narcolepsy as they share some of their tips for managing day to day with narcolepsy.

Watch more

Indications and usage & Important Safety Information

Important Safety Information

Do not take WAKIX if you are allergic to pitolisant or any ingredient in WAKIX, or if you have severe liver disease.

Tell your healthcare provider about all your medical conditions, including if you have heart rhythm irregularities, were born with a heart condition, or the levels of electrolytes in your blood are too high or too low. WAKIX has an effect on the electrical activity of the heart known as QT/QTc prolongation. Medicines with this effect can lead to disturbances in heart rhythm, which are more likely in patients with risk factors such as certain heart conditions, or when taken in combination with other medicines that affect QT. Tell your healthcare provider about all the other medicines you take.

The risk of QT prolongation may be greater in patients with liver or kidney disease. WAKIX is not recommended in patients with end-stage kidney disease.

The most common side effects seen with WAKIX were insomnia, nausea, and anxiety. Other side effects included headache, upper respiratory infection, musculoskeletal pain, heart rate increased, and decreased appetite. These are not all the possible side effects of WAKIX. Tell your healthcare provider about any side effect that bothers you or that does not go away.

Tell your healthcare provider about all the medicines you take or plan to take, including prescription and over-the-counter medicines. Some medicines can increase the amount of WAKIX that gets into your blood and some medicines can decrease the amount of WAKIX that gets into your blood. The dosage of WAKIX may need to be adjusted if you are taking these medicines.

WAKIX can also decrease the effectiveness of some medicines, including hormonal birth control methods. You should use an alternative non-hormonal birth control method during treatment with WAKIX and for at least 21 days after discontinuation of treatment.

Tell your healthcare provider if you are pregnant or planning to become pregnant. There is a pregnancy exposure registry that monitors pregnancy outcomes in women who are exposed to WAKIX during pregnancy. You are encouraged to enroll in the WAKIX pregnancy registry if you become pregnant while taking WAKIX. To enroll or obtain information from the registry, call 1-800-833-7460.

The safety and effectiveness of WAKIX have not been established in patients less than 18 years of age.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. You can also report negative side effects to Harmony Biosciences at 1-800-833-7460.

Indications and Usage

WAKIX is a prescription medicine used to treat excessive daytime sleepiness (EDS) or sudden onset of weak or paralyzed muscles (cataplexy) in adults with narcolepsy.

Please see Full Prescribing Information.

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