Idiopathic Hypersomnia

Diagnosis

To diagnose idiopathic hypersomnia, a healthcare professional reviews your symptoms, medical history and performs a physical exam. Several tests may be used to confirm the condition or rule out other causes of excessive daytime sleepiness.
People diagnosed with idiopathic hypersomnia typically experience persistent sleepiness every day for at least three months.

Tools and tests that may help include:

• Epworth Sleepiness Scale
  This questionnaire helps measure your level of daytime sleepiness and shows how sleep affects your daily functioning.

• Sleep diary
  You may be asked to track your daily sleep and wake times for several weeks to identify sleep patterns.

• Polysomnogram
  An overnight sleep study that monitors brain activity, heart rate, breathing, eye movements, leg movements and oxygen levels.

• Multiple sleep latency test
  Performed the day after a polysomnogram, this test measures how quickly you fall asleep during scheduled daytime naps and identifies the stages of sleep entered.

Treatment

Treatment for idiopathic hypersomnia focuses on reducing excessive sleepiness and improving daily functioning.

Medicines commonly used include:

• Modafinil
  A stimulant medicine that promotes wakefulness. Possible side effects include headache, nausea, dry mouth, diarrhea, decreased appetite and weight loss.

• Armodafinil
  Helps improve alertness but may cause headaches, dizziness, nausea, drowsiness, upper respiratory infections or nasal swelling.

Other medicines recommended by the American Academy of Sleep Medicine:

• Sodium oxybate

• Clarithromycin

• Pitolisant

• Methylphenidate

A newer low-sodium oxybate formulation is also approved for treating idiopathic hypersomnia in adults.

Lifestyle changes that may help:

• Follow a consistent nighttime sleep schedule

• Avoid alcohol

• Avoid medicines that negatively affect sleep

Preparing for Your Appointment

You may begin with a general healthcare professional or be referred to a sleep specialist. Preparing ahead can help you make the most of your visit.

What you can do:

• Ask if any special preparation is needed before tests

• List all symptoms, even those that seem unrelated

• Note major life events, stressors and family medical history

• Prepare a list of all medicines and supplements you take

• Write down questions you want to ask

• Bring a friend or family member for support if possible

Questions you may ask your healthcare team:

• What is the most likely cause of my symptoms?

• What other conditions could be causing these symptoms?

• What tests do I need?

• Is this a long-term condition?

• What treatment options are available?

• Are there alternative approaches?

• How can I manage my other health conditions together with this one?

• Are there lifestyle restrictions I should follow?

• Should I see a specialist?

• Do you recommend any reliable resources or printed materials?

What to Expect From Your Doctor

Your healthcare professional may ask questions such as:

• When did your symptoms start?

• Are the symptoms constant or occasional?

• How do they affect your daily routine?

• What improves your symptoms?

• What makes them worse?

What You Can Do in the Meantime

Try to avoid activities or habits that worsen your symptoms and maintain consistent sleep habits until your evaluation is complete.