From narcolepsy treatments to symptom management: What to ask your care team

An estimated 125,000 people in the United States live with narcolepsy, and treatment is deeply personal. According to sleep medicine specialist and narcolepsy expert Brynn K. Dredla, M.D., of Mayo Clinic in Jacksonville, Florida, “I can only think of a few patients I have on the same treatment.”

Understanding Narcolepsy and Its Treatment

Narcolepsy is a neurological condition impacting the brain’s sleep-wake cycle, often disrupting both nighttime sleep and daytime wakefulness. This can lead to excessive daytime sleepiness and difficulty completing daily tasks. Stigma and social judgment related to perceived “laziness” can also contribute to isolation, according to Dr. Dredla.

Two Types of Narcolepsy

There are two recognized types of narcolepsy. Type 1 includes cataplexy, which is the sudden loss of muscle tone, often triggered by emotions like laughter or joy. Episodes typically last a few minutes and can range from drooping eyelids to a full-body collapse. Type 1 is linked to inherited genes, such as the HLA-DQB1 gene, and may develop after certain illnesses, like bacterial infections or viruses.

A key characteristic of type 1 narcolepsy is low levels of orexin, a neurochemical messenger crucial for regulating the sleep-wake cycle, mood, alertness, and cognitive functions like memory and problem-solving.

Type 2 narcolepsy is less understood and typically doesn’t involve cataplexy or low orexin levels.

Did You Know? There are different classes of medicines available to treat narcolepsy, including stimulants, serotonin and norepinephrine reuptake inhibitors (SNRIs), selective serotonin reuptake inhibitors (SSRIs), and oxybates.

Optimizing Your Narcolepsy Treatment Plan

Even if current medications manage daytime sleepiness, Dr. Dredla emphasizes the importance of discussing overall quality of life and nighttime sleep habits with your healthcare team. Addressing sleep issues is fundamental to managing narcolepsy, and improving sleep quality can sometimes reduce the need for daytime medication.

It’s important to be open about all sleep-related experiences, even those that may feel embarrassing, such as sleep paralysis, vivid nightmares, or hallucinations. These experiences are symptoms of the condition, not personal failings, and sharing them can lead to more effective treatment.

Dr. Dredla also encourages open discussion about mental health, as narcolepsy can increase the risk of anxiety and depression. Safety planning for cataplexy and sleepiness episodes, particularly for those who drive, is also crucial.

Expert Insight: The individualized nature of narcolepsy treatment underscores the importance of a collaborative relationship between patient and care team. Open communication and a holistic approach—considering both daytime symptoms and nighttime sleep quality—are essential for achieving the best possible outcomes.

Questions to Discuss with Your Healthcare Professional

When discussing treatment options, consider these lifestyle factors:

Sleep hygiene and hours of sleep.
Nap schedule.
Caffeine intake and timing.
Alcohol and nicotine intake, especially near bedtime.
Exercise habits and timing.
Other health conditions.
Other medications or supplements, including birth control, as interactions are possible.

Dr. Dredla recommends preparing questions about medication options, including:

Potential side effects.
Possible drug interactions.
Safe use of stimulants, given their potential for habit formation.
Medication timing and optimization.
How to determine when a different medication or dose is needed.
The process of transitioning between medications and potential side effects.
Availability of new medications.

Frequently Asked Questions

What are the two types of narcolepsy?

The two types of narcolepsy are Type 1, which includes cataplexy and is associated with low levels of orexin, and Type 2, which typically does not cause cataplexy or low orexin levels.

Why is it important to discuss nighttime sleep with my doctor?

Narcolepsy is a sleep-wake disorder, so addressing sleep issues is crucial. Improving nighttime sleep can sometimes reduce daytime symptoms and medication needs.

What should I do if I feel embarrassed to discuss certain symptoms?

It’s important to advocate for yourself and understand that experiences like sleep paralysis or hallucinations are symptoms of the condition, not personal failings. Sharing these experiences with your care team can lead to more effective treatment.

What aspects of your daily life do you find are most impacted by managing narcolepsy?