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Living with Narcolepsy Community Group

Narcolepsy is a chronic and incurable neurological disorder that impairs the brain’s ability to regulate the sleep-wake cycle. While symptoms often start in childhood and adolescence, it can occur at any age, in any gender and with no previous history of narcolepsy in the family. Due to low awareness (even among health professionals), and misperceptions, it usually takes several years for people with narcolepsy to receive a diagnosis while even more are currently undiagnosed or misdiagnosed. This also makes it difficult to provide an exact number for people living with narcolepsy, but it is estimated to be 1 in 2000.


While not all symptoms are experienced by or in the same way in people with narcolepsy, the main symptoms are:

  • Excessive daytime sleepiness: People with narcolepsy experience extreme sleepiness during the day which often results in an irresistible urge to sleep. Sometimes sleepiness occurs so suddenly and with such overwhelming power that it is referred to as a ‘sleep attack’.


  • Cataplexy: Episodes of muscle weakness usually triggered by strong emotions such as happiness, laughter, surprise, or anger, but can also be triggered by stress, exhaustion, over stimulation, or feeling anxious or overwhelmed. The severity and duration of cataplexy episodes varies among individuals. Some may feel their head nod, jaw slacken, or their knees buckle momentarily, while others may have a full body collapse. During a full body collapse the individual is fully conscious however they are unable to move, speak or open their eyes. These episodes generally last a few seconds to a few minutes.


  • Sleep paralysis: The individual is unable to move for a few seconds or minutes, usually upon falling asleep or waking up.
    Sleep paralysis may be experienced by about 15% of the population whether they have narcolepsy or not. 


  • Hallucinations: People with narcolepsy can have visual, auditory, or tactile hallucinations which can occur upon falling asleep (hypnagogic) or waking up (hypnopompic). They can be both frightening and confusing.


  • Disturbed night-time sleep: Because the sleep-wake cycle is different for people with narcolepsy, they may struggle to stay awake during the day but then also struggle to go to sleep and stay asleep at night. Individuals will often wake up multiple times during the night due to things like insomnia, vivid-dreams, and restless legs.

There are two types of narcolepsy: 
Type 1 Narcolepsy (narcolepsy with cataplexy), research suggests is caused by a lack of hypocretin in the brain. Hypocretin (also referred to as orexin) is a key neurotransmitter that helps regulate wakefulness and rapid eye movement (REM) sleep.
Type 2 Narcolepsy (narcolepsy without cataplexy). Less is known about type 2 narcolepsy, some researchers believe it could encompass a variety of different conditions, including the inco
mplete form of Idiopathic Hypersomnia. People with type 2 narcolepsy do not experience cataplexy and many do not experience sleep paralysis or hallucinations. 

How is narcolepsy diagnosed? 

Diagnosing narcolepsy requires a comprehensive medical history and proper clinical evaluation including a thorough physical examination and medical tests are necessary to rule out all other possible causes. Sleep studies involving a Polysomnography (PSG) followed immediately by a Multiple Sleep Latency Test (MSLT) are also carried out. The results of the sleep study combined with other medical tests and a comprehensive medical history help doctors determine whether a patient has narcolepsy.

What treatment is available for narcolepsy? 

Treatment for narcolepsy symptoms varies among individuals but may include:

• Stimulant medications to increase wakefulness during the day.

• Daytime naps.

• Antidepressant medication to help reduce the severity and number of cataplexy episodes.

• Central nervous system depressant medications at night to help with deep sleep. Xyrem (Sodium Oxybate).

• Lifestyle changes such as maintaining a regular sleep schedule, diet and exercise, relaxation, and social support through face to face or online meet up groups.

Note: Medications such as modafinil/armodafinil can interact with hormonal birth control making it less effective. Speak to your doctor for more advice.

Living with Narcolepsy  

Whether it is work, relationships, parenting, exercising, shopping, driving, going on holidays, or performing household duties, for the individual navigating life with narcolepsy (and their family, friends, and loved ones), it can be a bumpy road at times due to its unpredictability and ongoing challenges.


Apart from early diagnosis; medications, environment, education, daytime naps, connecting with other people with narcolepsy, and feeling supported and understood by peers, family, loved ones, and treating health professionals are just a few areas that can influence how a person with narcolepsy adjusts to their diagnosis and new life.


This is where support groups can be of benefit not only to people with narcolepsy (especially those newly diagnosed), but to their friends, families, and loved ones as well. While support groups can help the individual living with narcolepsy find coping skills and feel understood and less alone through meeting and connecting with other like-minded individuals, they can also help (and even save) the relationships the individual has with friends, family, and loved ones because they no longer feel the need to share their entire narcolepsy journey with them. Unless they want you to of course!

Most people with narcolepsy find it necessary to make some lifestyle changes, and through research and experience, the individual will gain an understanding of what they have no control over, what they can learn to manage, and what changes are required for them to do so. This is a process and may take longer for some than it will for others. Why? Because as mentioned earlier, not all narcolepsy symptoms are experienced by or in the same way in people with narcolepsy. And treatment and management should reflect this.


While there is currently no cure for narcolepsy, ongoing research by dedicated experts and specialists gives hope for better treatments in the near future.  If you think you may have narcolepsy, you should consult your family doctor.

Are you living with Narcolepsy and would like to connect with others?
Meet others you can relate to at Hypersomnolence Australia's regular Living with Narcolepsy Community catch ups. The Living with Narcolepsy Community meets monthly via Google Meet. If you would like to attend a catch up please register here. 
If you have any questions about the Living with Narcolepsy Community please email
You can find more information about the Living with Narcolepsy Community on the Support Group page on Hypersomnolence Australia's website.

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Read stories and perspectives by people living with Narcolepsy here.

Looking for a Facebook Support group?
We recommend the Living With Narcolepsy in Australia Facebook group. The Living with Narcolepsy in Australia group is a support and information sharing group run by the Living with Narcolepsy Community Group Facilitator, Di Spillane. The group is for people living in Australia who have been officially diagnosed with Narcolepsy. 

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