Living with Narcolepsy
A long-lasting sleep condition with strong daytime sleepiness and sometimes sudden loss of muscle tone.
Understanding Narcolepsy
It can appear at any age but most often begins in adolescence. People feel tired during the day and may feel an overwhelming urge to sleep several times a day. These sleep attacks last seconds to minutes, and people often wake feeling refreshed. Many also have cataplexy, a sudden loss of muscle tone triggered by strong emotion. Nighttime sleep is also affected.
Signs & symptoms
GARD doesn't list a detailed symptom list, but the summary describes these features:
- Strong daytime sleepiness
- Sudden sleep attacks
- Sudden loss of muscle tone with strong emotion (cataplexy)
- Trouble sleeping through the night
- Vivid dream-like images while falling asleep or waking
- Short periods of being unable to move or speak (sleep paralysis)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Project Sleep
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD doesn't describe a cause for this condition yet.
Also known as: gelineau's syndrome; narcolepsy with or without cataplexy; narcoleptic syndrome; paroxysmal sleep
Patient organizations
- Project SleepNarcolepsy · United States
You are more than your diagnosis
Perspectives from people navigating life with Narcolepsy.
Explore research for Narcolepsy
Explore actively recruiting Narcolepsy studies with HealthSpark.
Find actively recruiting studies for Narcolepsy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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