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- Patient Comments: Narcolepsy - Treatments
- Patient Comments: Narcolepsy - Experience
- Patient Comments: Narcolepsy - Excessive Daytime Sleepiness
- Patient Comments: Narcolepsy - Hypnagogic Hallucinations
- Patient Comments: Narcolepsy - Muscle Control
- Find a local Sleep Specialist in your town
- Narcolepsy facts
- What is narcolepsy?
- How common is narcolepsy?
- What causes narcolepsy?
- What are the symptoms of narcolepsy?
- Excessive daytime sleepiness (EDS)
- Hypnagogic hallucinations
- Sleep paralysis
- Additional symptoms
- How is narcolepsy diagnosed?
- What is the treatment for narcolepsy?
- What specialists treat narcolepsy?
- What medications treat narcolepsy?
- Non-drug treatments
- What is the outcome (prognosis) for patients with narcolepsy?
- What's in the future for narcolepsy?
- For more information
Quick GuideSleep Disorders: Insomnia, Sleep Apnea, and More
Non-drug treatments include education of the patient and family members and modification of behavior patterns. Understanding the symptoms of narcolepsy may help relieve some of the frustrations, fears, anger, depression, and resentment of patients and family members. Emotional reactions are responses to both the unusual nature of the symptoms and society's ignorance of this disease. National organizations and local narcolepsy support groups are additional sources of information and assistance. (See "For more information" below.)
Behavioral approaches include establishing a regular, structured sleep-wake schedule. Planned naps of 15 to 30 minutes or longer may be beneficial in reducing daytime sleepiness. Certain dietary restrictions should be observed (for example, avoidance of large meals and alcohol). Regular exercise and exposure to bright light can improve alertness. Occupational, marriage, and family counseling may help improve the patient's quality of life.
Special considerations may be needed for school schedules and working conditions. Occupations that require working in shifts, changing the work schedule, or driving should be avoided. The dangers of driving while sleepy and/or experiencing cataplexy need to be addressed and the patients should be advised to avoid driving with these symptoms. However, many patients with narcolepsy are able to drive for short distances at certain times of the day and after taking their stimulant medications. Reporting requirements to the Department of Motor Vehicles (DMV) differ from state to state. Some states require that individuals who have any lapses of consciousness or sleepiness be reported to the DMV.
What is the outcome (prognosis) for patients with narcolepsy?
Narcolepsy is a life-long disease. The symptoms may vary in severity during the patient's lifespan, but they never disappear completely. Symptoms usually gradually worsen over time, and then tend to become stable. Even then, the excessive daytime sleepiness may become more pronounced and require additional medication. At other times, cataplexy or the other symptoms may decrease or even disappear for a time.
Different factors contribute to changes in a patient's symptoms, including an irregular sleep/wake schedule, the use of substances or drugs that affect the central nervous system, infections of the brain, and the development of additional sleep disorders, such as sleep apnea syndrome (SAS), periodic limb movements in sleep syndrome (PLMS), or others. Regular doctor check-ups and adherence to the drug plan and behavioral treatment may diminish these fluctuations and improve the patient's symptoms and quality of life.
A primary care physician, usually in collaboration with a sleep medicine specialist, can recognize the symptoms of narcolepsy, initiate the proper evaluation, and manage the treatment that is recommended by the specialist.
What's in the future for narcolepsy?
The discovery that a lack of hypocretins in the cerebrospinal fluid (CSF) may be related to the cause of narcolepsy could lead to the development of tests to determine the level of hypocretins in the CSF. Such tests could help in the diagnosis of narcolepsy. The expectation is that these tests will be simple (drawing blood), and will reflect the level of hypocretins in the CSF. In addition, the discovery of the role of hypocretins in the development of narcolepsy may lead to the development of new drugs for the treatment of narcolepsy.
For more information
Narcolepsy Network, Inc.
46 Union Drive #A212
North Kingstown, RI 02852
Tel: 888-292-6522; 401-667-2523
National Sleep Foundation
1010 N. Glebe Road, Suite 420
Arlington, VA 22201
American Academy of Sleep Medicine. "New Study in the Journal SLEEP Finds a High Prevalence of Eating Disorders in Narcoleptics." March 2008.
Narcolepsy Network. "Treatment." September 2015.
National Sleep Foundation. "Narcolepsy and Sleep." September 2015.
Pisko, J. et al. "Nightmares in narcolepsy: underinvestigated symptom?" 15.8 (2014): 967-972.
Previous contributing author and editor:
Medical Author: Roza Hayduk, MD
Medical Editor: Leslie J. Schoenfield, MD, PhD