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Treatments for Narcolepsy

Updated on April 28, 2021
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Kelly Crumrin

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.

Medications for Narcolepsy

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.

FDA-Approved Medications

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.

Off-Label Medications

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.

Drugs and Substances That Can Worsen Narcolepsy Symptoms

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:

  • Caffeine
  • Nicotine
  • Alcohol
  • Over-the-counter allergy and cold medications that cause drowsiness
  • Minipress (prazosin), an alpha-1 antagonist used for hypertension and urinary retention
  • Thyroid hormone, prescribed for underactive thyroid
  • Corticosteroids, used to suppress inflammation
  • Diuretics, a common treatment for hypertension
  • Beta-blockers, prescribed to treat hypertension and other cardiovascular problems
  • Anti-arrhythmics, used to treat and prevent abnormal heart rhythm

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.

Sleep Hygiene

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:

  • Stick to a regular sleep schedule, even on weekends.
  • Take short naps when you feel sleepiest during the day.
  • Exercise daily for at least 20 minutes.
  • Avoid caffeine, alcohol, or heavy meals before bedtime.
  • Don’t smoke, especially in the evening.
  • Keep your sleeping space comfortable and maintain a cool temperature.
  • Take time to relax before bed.

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.

Treating Mental Health

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.

Treating Related Conditions

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.

Condition Guide

References
  1. How is narcolepsy diagnosed? (European Narcolepsy Network.) Retrieved March 12, 2020, from https://www.eu-nn.com/how-is-narcolepsy-diagnosed/
  2. Self-Care. (Division of Sleep Medicine at Harvard Medical School). Retrieved March 13, 2020, from http://healthysleep.med.harvard.edu/narcolepsy/treating-narcolepsy/self-care
  3. FDA Approves Pitolisant for Daytime Sleepiness in Patients with Narcolepsy. (PharmacyTimes). Retrieved March 12, 2020, from https://www.pharmacytimes.com/news/fda-approves-pitolisant-for-daytime-sleepiness-in-patients-with-narcolepsy
  4. Jazz Pharmaceuticals, Inc. (2018). Xyrem: Highlights of Prescribing Information. Palo Alto, CA: Author. Accessed at http://pp.jazzpharma.com/pi/xyrem.en.USPI.pdf
  5. Xyrem (sodium oxybate). (CenterWatch). Retrieved March 12, 2020, from https://www.centerwatch.com/directories/1067-fda-approved-drugs/listing/4481-xyrem-sodium-oxybate
  6. Wakix (pitolisant). (CenterWatch). Retrieved March 12, 2020, from https://www.centerwatch.com/directories/1067-fda-approved-drugs/listing/4440-wakix-pitolisant
  7. Sunosi (solriamfetol). (CenterWatch). Retrieved March 12, 2020, from https://www.centerwatch.com/directories/1067-fda-approved-drugs/listing/4229-sunosi-solriamfetol
  8. Nuvigil (armodafinil). (CenterWatch). Retrieved March 12, 2020, from https://www.centerwatch.com/directories/1067-fda-approved-drugs/listing/3924-nuvigil-armodafinil
  9. Medications. (Division of Sleep Medicine at Harvard Medical School). Retrieved March 12, 2020, from http://healthysleep.med.harvard.edu/narcolepsy/treating-narcolepsy/medications
  10. Narcolepsy. (2019, January 12). Mayo Clinic. Retrieved March 12, 2020, from https://www.mayoclinic.org/diseases-conditions/narcolepsy/diagnosis-treatment/drc-20375503
  11. How is narcolepsy treated? (European Narcolepsy Network). Retrieved March 13, 2020, from https://www.eu-nn.com/how-is-narcolepsy-treated/
  12. How Medications May Be Negatively Affecting Your Ability to Sleep. (SleepFoundation.org). Retrieved March 13, 2020, from https://www.sleepfoundation.org/articles/how-medications-may-affect-sleep
  13. Narcolepsy Fact Sheet. (National Institute of Neurological Disorders and Stroke). Retrieved March 13, 2020, from https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Narcolepsy-Fact-Sheet
  14. Bhattarai, J., & Sumerall, S. W. (2017). Current and future treatment options for narcolepsy: A review. Sleep Science. doi: 10.1016/j.slsci.2017.01.002 Accessed at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5611768/
  15. Fronczek, R., Raymann, R. J., Romeijn, N., Overeem, S., Fischer, M., van Dijk, J. G., Lammers, G. J., & Van Someren, E. J. (2008). Manipulation of core body and skin temperature improves vigilance and maintenance of wakefulness in narcolepsy. Sleep, 31(2), 233–240. https://doi.org/10.1093/sleep/31.2.233. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2225580/
  16. Marín Agudelo, H. A., Jiménez Correa, U., Carlos Sierra, J., Pandi-Perumal, S. R., & Schenck, C. H. (2014). Cognitive behavioral treatment for narcolepsy: can it complement pharmacotherapy?. Sleep science (Sao Paulo, Brazil), 7(1), 30–42. https://doi.org/10.1016/j.slsci.2014.07.023
  17. Jennum, P., Ibsen, R., Knudsen, S., & Kjellberg, J. (2013). Comorbidity and Mortality of Narcolepsy: A Controlled Retro- and Prospective National Study. Sleep, 36(6), 835–840. doi: 10.5665/sleep.2706 Accessed at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3649826/

A MyNarcolepsyTeam Member said:

I'm on DULuxitine also Cymbalta, I know exactly what you mean, I'm happy you have some control over it, the articles will help also. Just know your not alone.🥰

posted 7 months ago

hug (5)

Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Kelly Crumrin is a senior editor at MyHealthTeams and leads the creation of content that educates and empowers people with chronic illnesses. Learn more about her here.

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