Living with Idiopathic hypersomnia
A sleep disorder that causes constant daytime sleepiness and trouble waking up.
Understanding Idiopathic hypersomnia
Symptoms often begin between adolescence and young adulthood and develop over weeks to months. People may fall asleep unintentionally and have trouble waking from sleep or naps. Sleeping longer at night does not seem to help daytime sleepiness.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Excessive daytime sleepiness
- Brain fog
- Memory problems
- Short attention span
- Trouble waking up (sleep drunkenness)
- Disturbed sleep
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 may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Hypersomnia 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 of IH is not known. Some people have family members with a sleep disorder such as IH or narcolepsy.
Also known as: idiopathic excessive sleepiness; primary hypersomnia
Patient organizations
- Hypersomnia FoundationIdiopathic hypersomnia · United States
- Project SleepIdiopathic hypersomnia · United States
You are more than your diagnosis
Perspectives from people navigating life with Idiopathic hypersomnia.
Explore research for Idiopathic hypersomnia
Explore actively recruiting Idiopathic hypersomnia studies with HealthSpark.
Find actively recruiting studies for Idiopathic hypersomnia 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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