Narcolepsy is a sleep disorder characterized by symptoms including excessive sleepiness, sleep attacks, sleep paralysis, and cataplexy — sudden loss of muscle tone that may be triggered by strong emotions.
There are two main types of narcolepsy, and they may be treated in different ways. Before 2014, type 1 narcolepsy was known as narcolepsy with cataplexy, and type 2 narcolepsy was called narcolepsy without cataplexy. These terms changed with the publication of the third edition of the International Classification of Sleep Disorders.
Treatment for narcolepsy is most often a combination of medication and lifestyle changes that promote good sleep hygiene.
Many medications may be prescribed to treat narcolepsy. Some drugs are approved by the U.S. Food and Drug Administration (FDA) specifically to treat narcolepsy, while others may be prescribed to treat narcolepsy off-label. Off-label means that the drugs have not been approved for treating narcolepsy.
Drugs approved by the U.S. Food and Drug Administration treat narcolepsy based on the type or major symptoms. All of the drugs described below are taken orally. Most drugs approved for treating narcolepsy are scheduled by the government as controlled substances due to their potential for abuse.
Xyrem (sodium oxybate) is currently the only drug approved to treat type 1 narcolepsy (specifically indicated as cataplexy associated with narcolepsy). It is also approved to treat excessive daytime sleepiness associated with narcolepsy. Sodium oxybate, the active ingredient in Xyrem, is a substance that occurs naturally in the brain and is involved with sleep regulation. Common side effects of Xyrem can include confusion, dizziness, and headaches. Another form of sodium oxybate, gamma hydroxybutyrate (GHB), is abused recreationally by some people. Xyrem is available only through a restricted-access enrollment program. It is not well understood how Xyrem works to treat cataplexy. There is also a newer version of Xyrem called Xywav, which is specifically designed to have a lower sodium content — which is helpful for people with salt-sensitive high blood pressure.
Wakix (pitolisant) is also approved to treat excessive daytime sleepiness (EDS) and cataplexy associated with narcolepsy. Wakix is the only drug currently approved to treat narcolepsy that is not scheduled as a controlled substance in the United States. Considered a histamine-3 (H3) receptor antagonist/inverse agonist, Wakix is believed to work by raising levels of histamine, a substance that promotes wakefulness. Side effects of Wakix can include nausea, insomnia, and anxiety.
There are several medications approved to treat type 2 narcolepsy. Sunosi (solriamfetol) is indicated for excessive daytime sleepiness associated with narcolepsy or obstructive sleep apnea. Common side effects of Sunosi may include headaches, dizziness, insomnia, and decreased appetite. Sunosi is considered a dopamine and norepinephrine reuptake inhibitor. It is not known how Sunosi works in cases of narcolepsy.
Provigil (modafinil) and Nuvigil (armodafinil) are specifically indicated to improve wakefulness in people with EDS associated with obstructive sleep apnea/hypopnea syndrome (OSAHS), narcolepsy, and shift work sleep disorder (SWSD). Provigil and Nuvigil are closely related drugs in a class of stimulants known as eugeroics. Common side effects of these drugs may include headache, nausea, dizziness, and insomnia. It is not well understood how Provigil and Nuvigil work to promote wakefulness.
Several medications may be prescribed off-label to treat symptoms of narcolepsy. As with prescribed medications, treatment options depend on the type and severity of narcolepsy.
Antidepressants have been prescribed for many decades to help treat cataplexy, the core symptom of narcolepsy type 1. Researchers believe antidepressants may relieve cataplexy by suppressing rapid-eye-movement sleep, also known as REM sleep. Antidepressants sometimes prescribed to treat type 1 narcolepsy include Effexor (venlafaxine), Prozac (fluoxetine), Anafranil (clomipramine), and Vivactil (protriptyline).
Amphetamines and other stimulants have been prescribed to relieve excessive sleepiness due to narcolepsy since the 1930s. Drugs of this class are believed to increase alertness by raising levels of dopamine in the brain. Stimulants sometimes used to treat narcolepsy include Dexedrine (dextroamphetamine), Adderall (amphetamine/dextroamphetamine), and methylphenidate, marketed under the brand names Ritalin and Concerta. Amphetamines can cause serious side effects, such as increased blood pressure, mania, and psychosis, and must be taken exactly as prescribed.
Some medications (both over-the-counter and prescription-only) and other substances have been shown to worsen cataplexy or EDS in some people with narcolepsy. Depending on your narcolepsy symptoms and their severity, doctors may recommend you avoid using some of these substances or medications, or take them only at certain times during the day. They may include any substance that can interfere with sleep, such as:
If you are concerned that a medication may be disturbing your sleep patterns or worsening your narcolepsy symptoms, discuss the situation with your doctor before making any changes.
Most doctors recommend a combination of lifestyle changes to support good sleep hygiene and medications to treat narcolepsy. The National Institute of Neurological Disorders and Stroke recommends that people with narcolepsy practice the following as much as possible:
Keeping a sleep log or other means of self-assessing sleep patterns and narcolepsy symptoms can aid doctors in diagnosing narcolepsy. Sleep logs can help assess the effectiveness of treatments by tracking changes in the pattern of sleep and wakefulness.
A small study of eight people provided evidence that skin temperature may be regulated differently in those with narcolepsy. Results suggested that people with narcolepsy remained significantly more wakeful when their temperature was reduced minimally with cold food or drinks and felt sleepier when their temperature was raised with warm food and drinks.
Used in addition to medications, psychotherapy has been shown to be effective in helping to treat narcolepsy. Cognitive behavioral therapy (CBT) specifically has been identified in helping people with narcolepsy manage behaviors related to sleep patterns, manage anxiety, and control stimuli that trigger cataplexy. CBT techniques have also proven effective at reducing and coping with hypnagogic hallucinations and improving sleep paralysis.
Since depression is the most common mood disorder in those with narcolepsy, it is important to make sure mental health is addressed in the treatment plan. In addition to CBT or other psychotherapy and antidepressant medications, support groups (online or in person) can be beneficial in helping people with narcolepsy avoid isolation and find community and understanding.
People with narcolepsy have a higher risk for developing related health conditions, including sleep apnea, type 2 diabetes, and obesity. If you have one or more other health conditions in addition to narcolepsy, it is important to seek treatment for these conditions to stay your healthiest and have the highest quality of life possible as you manage your narcolepsy.