People with narcolepsy in all stages of life, sleeping while the sun shines

Narcolepsy Changes Across the Lifespan

Reviewed by: HU Medical Review Board | Last reviewed: August 2024 | Last updated: August 2024

Different life stages can have an effect on medical conditions. This includes narcolepsy. Life changes can mean new symptoms, changes to medicines, and different ways of managing your illness. Here is a closer look at how narcolepsy changes according to where you are in your life.1

Children

Kids with narcolepsy have different needs than adults with the condition. Children also have fewer treatment options. Younger children are physically smaller and have a higher metabolism. This means your doctor may suggest a different dose for a young child versus an adult or older kid.1

The following drugs are approved by the US Food and Drug Administration (FDA) to treat children and teens with narcolepsy:2-5

  • Wakix® (pitolisant) – for treatment of excessive daytime sleepiness (EDS) in children ages 6 and older
  • Xyrem® (sodium oxybate) – for treatment of EDS and cataplexy (sudden loss of muscle tone) in children ages 7 and older
  • Xywav™ (calcium, magnesium, potassium, and sodium oxybates) – for treatment of children ages 7 and older with narcolepsy plus cataplexy or EDS

Doctors also prescribe other medicines for off-label use in kids. Off-label use is prescribing a drug approved by the FDA for a use not approved by the FDA. Several drugs are used off-label to treat EDS and cataplexy in children with narcolepsy, including:2,3

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  • Dexedrine® (dextroamphetamine)
  • Provigil® (modafinil)
  • Ritalin®, Concerta®, Metadate® (methylphenidate)

Children may experience changes in their growth with the use of narcolepsy drugs. Amphetamines can slow growth, but the change is only temporary until a child stops taking the medicine. Meanwhile, Xyrem may cause kids to make more growth hormones. Experts are not sure this increase affects kids’ height or weight.1

People who are or may become pregnant

If you are having a baby or thinking about getting pregnant, talk to your doctor about changes to your narcolepsy medicine.1

The FDA has classified many narcolepsy drugs as Pregnancy Category C. This means:1

  • The drug has been studied in animals
  • The drug has shown harmful effects on unborn animals
  • There are not enough studies on humans to be clear about the drug's impact on unborn babies

Xyrem falls into Pregnancy Category B. That means:1

  • Animal studies have not shown harmful effects on unborn animals
  • There are not enough studies on humans to be clear about the drug's impact on unborn babies

Your doctor will likely suggest you stop taking narcolepsy medicine before and during pregnancy. The one exception is if you are unable to function without the drug. But if more naps during the day can ease your symptoms, it might make sense to stop taking narcolepsy medicine before and during your pregnancy.1

If you have cataplexy, tell your obstetrician that you have narcolepsy with cataplexy. Some women have experienced cataplexy during labor, but this is uncommon.1

Older adults

As you age, lifestyle changes and other medical conditions could prompt an adjustment to your narcolepsy medicine. First-line treatments for adults with EDS include:1,3-5

  • Nuvigil
  • Provigil
  • Wakix
  • Xyrem or gamma hydroxybutyrate
  • Xywav

Second-line and third-line treatments include:3

  • Amphetamines
  • Methylphenidate
  • Solriamfetol

Most people with narcolepsy have it for their entire lives. But symptoms usually balance out as you age. They may even get better. If you find you are sleepier in adulthood, this may be the result of a medicine you take. Or you might have another sleep disorder, like sleep apnea.1

If you develop other medical conditions as you age, your doctor may need to adjust your narcolepsy drugs. For example, you should not take amphetamines if you have heart disease. And you should not take Xyrem if you live with high blood pressure or heart failure. People with heart problems, seizures, or glaucoma should not take protriptyline or clomipramine. You should work with your doctor to find alternative treatment options.1

Those who retire from work may find they can nap more throughout the day. If that is the case with you, your doctor may lower your dose of narcolepsy medicine. Your doctor could also lower the doses of these medicines if you have confusion or are physically unstable.1

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