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Narcolepsy

Important information for referring practitioners

Narcolepsy is a sleep disorder. It is usually an inherited condition, but has occurred after head injury or brain damage caused by severe infection. The prevalence of narcolepsy is estimated to be 1-2 per 2000.

The principal symptoms are

  • excessive daytime sleepiness (EDS), napping
  • cataplexy (loss of muscle tone)
  • hypnagogic hallucinations
  • sleep paralysis

Diagnosis

  • Narcolepsy may usually be confirmed by a sleep study (polysomnography) followed by a Multiple Sleep Latency Test (MSLT) but this is not always definitive and diagnosis may require careful consideration of the presenting symptoms over a period of time.

Treatment

  • The proper choice of medication and dosage requires careful attention to the person’s needs and responses, and close cooperation between patient and medical personnel. The medications used to control narcolepsy are usually very helpful but may cause some side effects. These can be controlled in most cases. The choice of medication is best to be made by a Specialist.

Lifestyle advice

  • Short naps may be helpful to some people.
  • Regular sleep hours and avoidance of sleep deprivation are very important.
  • Large meals should be avoided during the day and smaller, more frequent, low carbohydrate meals substituted.
  • Changes to lifestyle may be required, but the aim is to ‘fit’ the treatment to accommodate the normal physical and mental demands of school/work and family life.

Referral requirements

A referral may be rejected without the following information.

Essential referral information

  • Reason for referral
  • History of sleep disorder
    • Duration
    • Severity of symptoms
  • Management to date
    • Include last two specialist letters if seen previously at another centre
  • Other relevant medical conditions
  • Medications
    • Include full medication list and allergies (including illicit drug use)
  • Investigations
    • Sleep studies (if done)

Out of catchment

Metro North Health is responsible for providing public health services to the people who reside within its boundaries. Special consideration is made for patients requiring tertiary care or services that are not provided by their local Hospital and Health Service. If your patient lives outside the Metro North Health area and you wish to refer them to one of our services, inclusion of information regarding their particular medical and social factors will assist with the triaging of your referral.

  • Impact on employment
  • Impact on education
  • Impact on home
  • Impact on activities of daily living
  • Impact on ability to care for others
  • Impact on personal frailty or safety
  • Identifies as Aboriginal and/or Torres Strait Islander

  • To establish a diagnosis
  • For treatment or intervention
  • For advice and management
  • For specialist to take over management
  • Reassurance for GP/second opinion
  • For a specified test/investigation the GP can’t order, or the patient can’t afford or access
  • Reassurance for the patient/family
  • For other reason (e.g. rapidly accelerating disease progression)
  • Clinical judgement indicates a referral for specialist review is necessary

  • Presenting symptoms (evolution and duration)
  • Physical findings
  • Details of previous treatment (including systemic and topical medications prescribed) including the course and outcome of the treatment
  • Body mass index (BMI)
  • Details of any associated medical conditions which may affect the condition or its treatment (e.g. diabetes), noting these must be stable and controlled prior to referral
  • Current medications and dosages
  • Drug allergies
  • Alcohol, tobacco and other drugs use

  • Full name (including aliases)
  • Date of birth
  • Residential and postal address
  • Telephone contact number/s – home, mobile and alternative
  • Medicare number (where eligible)
  • Name of the parent or caregiver (if appropriate)
  • Preferred language and interpreter requirements
  • Identifies as Aboriginal and/or Torres Strait Islander

  • Full name
  • Full address
  • Contact details – telephone, fax, email
  • Provider number
  • Date of referral
  • Signature

  • Willingness to have surgery (where surgery is a likely intervention)
  • Choice to be treated as a public or private patient
  • Compensable status (e.g. DVA, Work Cover, Motor Vehicle Insurance, etc.)
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