Scroll down for information about our Living with Narcolepsy Support 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 encounter extreme sleepiness during the day and regardless of how much they sleep, never feel refreshed or recharged. For someone without narcolepsy to understand the impact of this relentless sleepiness they would have to stay awake for 24 to 72 hours and then carry out their usual day-to-day activities.
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. While these episodes generally last a few seconds to a few minutes, there is a thing called Status Cataplecticus, which are longer episodes of cataplexy. They can be very scary for the individual and depending on their surroundings, they can also be extremely vulnerable.
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 incomplete 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?
Diagnosis for narcolepsy usually includes a 24-hour full sleep study which records the patient’s brain waves. The sleep study is comprised of two parts, a polysomnogram (PSG), which is the night-time component and a multiple sleep latency test (MSLT), which is the daytime component where the patient is required to attempt to sleep at two hourly intervals throughout the day. Doctors look at how quickly and frequently the patient goes into rapid eye movement (REM)/dream sleep stage during the sleep study. The results of the sleep study combined with any medical tests performed and a comprehensive medical history help doctors determine whether a patient has narcolepsy.
It is important to note that any medication the patient is on prior to undergoing a sleep study may impact the results and therefore delay not only a correct diagnosis, but also delay the patient receiving appropriate and effective treatment and support.
What treatment is available for narcolepsy?
There is currently no cure for narcolepsy. Left untreated the individual’s symptoms will usually increase in severity over the years, often resulting in ongoing consequences not only for them but for those around them as well. These consequences can include poor performance at school, university, and/or work, social phobia, failed relationships, depression, and isolation. Many, if not all of these consequences can be devastating and have long lasting effects. Therefore, access to and timeliness of receiving effective and affordable treatment (tailored to the individual), is not only paramount but necessary. So too is considering the side effects of some medications as they can add challenges of their own.
Treatment for narcolepsy symptoms varies among individual’s but may include:
Stimulant medications to increase wakefulness during the day
Antidepressant medication to help reduce severity and number of cataplexy episodes
Central nervous system depressant medications at night to help with deep sleep
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
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.
Struggling to navigate life with narcolepsy?
Check out Fiona's A Patients Guide to Living with Narcolepsy.
This information has also been made into a trifold brochure if you would like a copy or if you would like us to send some copies to your doctor please let us know at firstname.lastname@example.org
Living with Narcolepsy Support Group
Sleep Disorders Australia aims to reduce social isolation among individuals living with Narcolepsy by providing a safe and empowering forum where their experiences can be shared, understood and validated by people they can relate to.
Details of the LWN Support Group
Living with Narcolepsy (LWN) support groups will be run virtually via Google Meet. Our group facilitator is Fiona Mobbs.
The purpose of LWN support group meetings is to support people with narcolepsy. Therefore, only people with a narcolepsy diagnosis living in Australia are permitted to attend our meetings. Exceptions to this rule will be at the discretion of the group facilitators only.
From time to time, we will hold meetings for parents of children (adults or minors) with narcolepsy and we encourage you to register your interest if you would like to be contacted when these meetings are scheduled. Please note: if your child is over eighteen years of age their consent will be required prior to you attending these meetings.
Would you like to attend a LWN Support Group Meeting?
Step one, please read our group Guidelines
Step two, please fill in our Attendee form
You will only need to read the group guidelines and fill in the attendee form once (prior to your first meeting). Once we have received your completed form you will receive invitations via email prior to each of our meetings. If you would like to attend the meeting please click YES in the RSVP. If you do not want to attend the meeting, click 'no' or ignore the invitation. You can request to be removed from the invitation list at any time.
If you have any questions about our LWN Support Group please contact our group facilitator, Fiona Mobbs at email@example.com