The risks of untreated or undertreated narcolepsy

Narcolepsy is a chronic neurological condition that disrupts the brain’s ability to regulate sleep-wake cycles. People with narcolepsy experience excessive daytime sleepiness (EDS) and “sleep attacks,” episodes of an overwhelming need for sleep that occur during waking hours. Disrupted or fragmented sleep, sleep paralysis, and sleep hallucinations are other possible symptoms.

There are two main types, called type 1 and type 2. People with type 1 experience an additional symptom, called cataplexy. Cataplexy refers to sudden episodes of muscle weakness or muscle paralysis. These episodes can be triggered by strong emotions like laughter, anger, stress, or surprise.

There is no cure for narcolepsy, but there are treatments that can help a person manage the disorder. Untreated or undertreated, narcolepsy can severely impact a person’s quality of life and put their safety at risk.

Lower quality of life

Quality of life refers to a person’s overall wellbeing and the balance of positive and negative elements of their life. Determining quality of life involves looking at many factors—physical health, mental health, relationships, finances, social life, professional goals, education, personal pursuits, hobbies, and many others. Because people have different priorities (and have different priorities at different times in their life), quality of life is very individualized and very subjective.

People with narcolepsy often have a lower quality of life, and people who do not respond well to treatment often report a poor quality of life. Some of the challenges a person with narcolepsy may face include:

• Difficulty with concentration, focus, and memory, which can affect school, work, and daily functioning.
• Difficulty staying awake in social gatherings and distress around the potential for symptoms (like sleep attacks or cataplexy) to occur during social situations.
• Facing stigma (feelings of being judged) from other people or internalized stigma (self judgement).
• Challenges finding the physical and mental energy to do things that can improve quality of life, such as exercising, preparing meals, and attending healthcare appointments.
• These factors can significantly impact a person's mental health, self-esteem, and sense of self-worth. There is a known association between narcolepsy, depression, and anxiety.

Safety concerns

Excessive daytime sleepiness, sleep attacks, and cataplexy can also put a person’s safety at risk, especially if symptoms are not under control. A person will not be able to safely operate a vehicle, and episodes of symptoms can also occur during other modes of transportation, including walking. Episodes can occur when cooking, when using appliances, and when operating machinery, increasing the risk of accidents and near accidents at home and at work.

Safety concerns can further reduce a person’s quality of life.

Treatment for narcolepsy

Treatment typically focuses on managing daytime sleepiness and other symptoms like cataplexy. Medications are a mainstay of treatment for narcolepsy and can include drugs to promote wakefulness and alertness, drugs to promote nighttime sleep, and drugs that help manage symptoms like cataplexy and hallucinations.

A healthcare provider may also advise making changes to habits and sleep routines, such as scheduling naps, maintaining a regular sleep schedule, eating healthy, and exercising. Social support and counseling can also be important parts of a treatment plan. These strategies may help a person get more out of treatment and help them maintain good overall health.

Identifying what you need from treatment

Improving quality of life is an important focus of treatment for narcolepsy and an important topic to discuss with your healthcare provider. If you are living with narcolepsy, it’s important to spend some time thinking about how this condition is affecting your quality of life. It can help to keep a journal tracking your symptoms and your experiences. Some questions you may want to ask yourself:

• What is the most difficult part of living with narcolepsy?
• What are the most challenging symptoms of narcolepsy?
• What things do I avoid doing because of narcolepsy?
• How would my life be different without narcolepsy?
• How do I feel about my current treatment plan?

Bring these notes to an appointment to discuss with your healthcare provider.