Info About Narcolepsy

Types

  • Type 1 with Cataplexy and/or low levels of hypocretin a brain hormone.
  • Type 2 without Cataplexy and normal levels of hypocretin.

Hypocretin is a hypothalamic neuropeptide. Neuropeptides are chemical messengers made up of small chains of amino acids that are synthesized and released by neurons. Hypothalamus is in the deep part of the brain that helps produce hormones to regulate heart rate, body temperature, hunger and the sleep-wake cycle. Hypocretin be lost due to an autoimmune disorder, brain injury and, or genetics.

Symptoms

One may have 1 or more symptoms.

Each symptom has a spectrum of severity.

Each person will live on one part of the spectrum.

Each person may move around within their own part of the spectrum.

  • Cataplexy (muscles release or become paralysed while conscious, the body goes into REM sleep but the brain does not). Can be triggered by strong emotions.
  • Excessive daytime sleepiness (tired regardless of sleep quality and quantity).
  • Sleep Attacks (fall asleep during the day): micro sleeps.
  • Sleep paralysis (waking or falling asleep, one is conscious, but the body can’t move).
  • Hallucinations (while waking or falling asleep).
  • Fragmented sleep and insomnia.

Suspected but Not Confirmed Causes

  • Genetics
  • Hormonal changes
  • Major psychological stress, e.g. PTSD
  • Sudden change in sleep patterns
  • Viral and bacterial infections (think long haul H1N1 influenza or Covid)
  • Head injury
  • Brain tumour
  • Multiple sclerosis (MS)

Diagnosis

  • Polysomnogram (PSG or sleep study)
  • Multiple sleep latency test (MSLT)
  • Spinal tap

Treatment

  • Medications to help with symptoms
  • Lifestyle

Demographic Data (from Narcolepsy Network)

  • Affects an estimated 1 in every 2,000 people in the United States (about 200,000 Americans)
  • Approximately 3 million worldwide.
  • Only 25% of people who have narcolepsy have been diagnosed and are receiving treatment.
  • 60% of patients were misdiagnosed.

Resources

knownarcolepsy.com

narcolepsyaustralia.org.au

narcolepsynetwork.org/

sleepoz.org.au/narcolepsy