Living with Kleine-Levin syndrome
A rare condition with repeated episodes of excessive sleep and changes in thinking and behavior, with normal health between episodes.
Understanding Kleine-Levin syndrome
People may sleep up to 20 hours a day during an episode, and episodes last a few days to a few weeks. They may eat more, be irritable, confused, or have hallucinations. People have no symptoms between episodes. It mainly affects teenage boys but can affect females and other ages. Episodes tend to decrease with age.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Episodes of excessive sleep
- Eating much more than usual
- Irritability and agitation
- Confusion and trouble thinking
- Headache and light sensitivity
- Apathy or low mood
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.
- 4Connect with expert centers
Hypersomnia Foundation and Kleine Levin Syndrome Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Hypersomnia Foundation, Kleine Levin Syndrome Foundation
- 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 Hypersomnia Foundation and other patient organizations
- 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
The cause is unknown. Episodes sometimes follow an upper respiratory infection.
Also known as: kleine levin syndrome; kleine-levin hibernation syndrome
Patient organizations
- Hypersomnia FoundationKleine-Levin syndrome · United States
- Kleine Levin Syndrome FoundationKleine-Levin syndrome · United States
- Project SleepKleine-Levin syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Kleine-Levin syndrome.
Explore research for Kleine-Levin syndrome
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- 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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