Narcolepsy

What is Narcolepsy?

Narcolepsy is a chronic neurological disorder that affects the brain’s ability to regulate sleep-wake cycles. People living with narcolepsy experience overwhelming daytime drowsiness and sudden bouts of sleep, which can occur at inappropriate times. This condition impacts the ability to lead a normal life, whether it’s managing work, study, or other activities. Narcolepsy affects approximately 1 in 2,000 people in Australia, and it often remains underdiagnosed due to its subtle and varied symptoms.

Symptoms of Narcolepsy

Narcolepsy is characterised by a range of symptoms that can significantly impact a person’s daily life. The primary symptoms, which vary greatly in intensity from person to person, include:

• Excessive Daytime Sleepiness: This is the most common symptom and often leads to falling asleep during routine activities, such as conversations or driving.
• Persistent drowsiness: overwhelming drowsiness during the day, regardless of adequate nighttime sleep. The irresistible urge to fall asleep often results in unintentional napping or dozing off at inappropriate times.
• Cataplexy: A sudden loss of muscle tone triggered by strong emotions like laughter, anger, or surprise. This ranges from mild weakness (such as drooping facial muscles or slurred speech) to complete muscle paralysis that can cause the person to collapse but remain fully conscious.
• Disrupted Nighttime Sleep: Frequent awakenings during the night, often due to fragmented sleep, can exacerbate daytime sleepiness. The poor sleep quality makes it difficult to maintain a consistent sleep schedule.
• Sleep Paralysis: A temporary inability to move or speak when waking up or falling asleep, and often accompanied by a sense of pressure or hallucinations.
• Hallucinations: Vivid and often frightening visual or auditory experiences that can occur when falling asleep or waking up.
• Memory recall: Difficulties with memory recall, attention span, and overall cognitive function. Performing tasks or actions without conscious awareness or memory of doing so.
• Eating patterns: shift and increase food cravings and potential weight fluctuations.

Causes of Narcolepsy

While the exact cause of narcolepsy is not fully understood, it is believed to involve a combination of genetic and environmental factors. In particular, a shortage of a brain chemical called hypocretin, which helps regulate wakefulness and REM sleep, is often present in people with narcolepsy. Genetics may also play a role, with specific genes linked to the risk of developing the disorder.

Diagnostic Tests for Narcolepsy

Diagnosing narcolepsy involves a comprehensive assessment by healthcare professionals with expertise in sleep disorders. Common tests include:

• Medical consultation: The doctor will discuss your symptoms, sleeping patterns, and medical history to gain a better understanding of your overall health and any potential underlying conditions that could contribute to your symptoms. This history will also include an exploration of past history of infections, as the onset of narcolepsy often follows an infective illness or vaccine. It’s important to rule out other potential causes of excessive daytime sleepiness, such as obstructive sleep apnea, restless legs syndrome, and certain medications or substances.
• Polysomnography (PSG): An overnight sleep study to evaluate brain activity, eye movement, muscle activity, and heart rate during sleep. It helps rule out other sleep disorders and assess the quality of your sleep.
• Multiple Sleep Latency Test (MSLT): Conducted the day after a PSG, this test measures how quickly you fall asleep during several scheduled naps and can help confirm excessive daytime sleepiness. It helps evaluate excessive daytime sleepiness and the presence of REM sleep abnormalities, which are characteristic of Narcolepsy.
• Hypocretin Level Test: A cerebrospinal fluid sample is taken to determine if hypocretin levels are low, confirming the diagnosis of narcolepsy type 1.

Complications of Narcolepsy

Without treatment, narcolepsy can significantly affect the quality of life. Some complications include:

• Impaired Functioning: Persistent daytime sleepiness and unpredictable sleep episodes can impact work, social activities, and personal relationships.
• Accidents: Falling asleep at inappropriate times (e.g., while driving or operating machinery) can lead to accidents or injuries.
• Mental Health Issues: Chronic sleep disturbances can contribute to mood disorders like anxiety or depression.

Treatment Options for Narcolepsy

There is currently no cure for narcolepsy, but treatments are available to manage symptoms and improve quality of life. At Manse Medical, we offer personalised treatment plans that may include:

• Medications: Stimulants (e.g., Modafinil or Armodafinil) for daytime sleepiness, antidepressants for cataplexy, and sodium oxybate to improve nighttime sleep and reduce daytime symptoms.
• Scheduled naps: Scheduled naps during the day, proper sleep hygiene, and avoiding triggers such as stress or extreme emotions can help control symptoms. 
• Lifestyle Modifications: Implementing healthy sleep habits and making lifestyle modifications can significantly improve symptoms. This includes maintaining a regular sleep schedule, ensuring a comfortable sleep environment, avoiding caffeine, alcohol, and heavy meals close to bedtime, engaging in regular physical exercise, and practising good sleep hygiene, which can help some people manage this sleep disorder.
• Behavioural Therapy: Psychological counselling and cognitive-behavioural therapy (CBT) may be helpful in managing the emotional aspects of living with narcolepsy. However, it is important to make sure that your counsellor is familiar with the condition. There are narcolepsy support groups online that can offer emotional support, coping strategies, and guidance for managing the challenges associated with narcolepsy.
• Education and lifestyle management: Educating oneself about Narcolepsy and its management is crucial. Learning about triggers, developing effective time management techniques, and incorporating stress management practices can help individuals better navigate their daily routines and optimise their overall well-being.
• Safety measures: Since Narcolepsy can affect alertness and cause sudden sleep attacks, taking safety precautions is vital. This may include avoiding activities that pose a risk, such as driving or operating heavy machinery, during periods of excessive sleepiness. Ensuring a safe environment at home and work is also important to minimise the potential hazards associated with Cataplexy. Individuals who have been diagnosed with narcolepsy need to report the condition to VicRoads and discuss their fitness to drive with their sleep physician.

What are the risk factors?

While the exact cause of narcolepsy is still not fully understood, certain risk factors have been associated with the development of the condition. These risk factors include:

• Genetic Predisposition: Individuals with certain variations in specific genes have an increased risk of developing narcolepsy. However, having these genetic variations does not guarantee that someone will develop the condition. There are also people without the genetic predisposition that have Narcolepsy.
• Autoimmune Factors: It is believed to involve an autoimmune response in which the immune system mistakenly attacks cells in the brain that produce hypocretin, a neuropeptide involved in regulating wakefulness.
• Age: This often starts during adolescence or young adulthood, although it can develop at any age. The symptoms may gradually appear and worsen over time.If an older person develops narcolepsy symptoms then this can occur as a consequence of stroke or other neurological condition, such as Multiple Sclerosis. In these situations, more extensive neurological problems are usually present.
• Family History: Having a close family member with this kind of sleep disorder increases the likelihood of developing the condition. The risk is higher in first-degree relatives (parents, siblings, and children) compared to the general population.
• Prior Infections or Illnesses: Some studies suggest that certain infections may trigger or contribute to the development of this sleep disorder in individuals who are genetically susceptible.

It’s important to note that while these risk factors can increase the likelihood of developing this sleep disorder, they do not guarantee its occurrence. Many individuals with this condition have no family history of the condition, and not everyone with these risk factors will develop Narcolepsy.

Frequently Asked Questions

If you’re experiencing symptoms of narcolepsy or wish to learn more, contact Manse Medical today. Our team of experts is here to help you sleep well again.