Ask the Expert: How Does Narcolepsy Affect Women

Are narcolepsy symptoms different in women?

Narcolepsy symptoms are largely similar in men and women. The most prominent symptom is excessive daytime sleepiness.

Many people with narcolepsy wake up feeling refreshed. However, throughout the day, they experience repeated, unwanted episodes of sleepiness that can last anywhere from a few minutes to an hour or so. In addition to these episodes, there’s often a baseline level of sleepiness that persists throughout the day.

Other common symptoms include:

• Sleep paralysis: A frightening experience that occurs when falling asleep or waking up. During these episodes, a person may feel awake but unable to move, creating a strong sense of panic or distress.
• Hallucinations: Visual or auditory hallucinations can occur, especially during episodes of sleep paralysis.
• Disrupted nighttime sleep: Frequent awakenings and difficulty maintaining consolidated sleep are common.
• Vivid dreaming: People with narcolepsy often report extremely vivid dreams, sometimes in color, and may recall dreaming during short daytime naps. This happens because the brain has difficulty distinguishing between wakefulness and sleep, causing it to enter REM sleep very quickly, even during brief naps.
• Cataplexy: A sudden loss of muscle tone triggered by strong emotions such as laughter, surprise, anger, or excitement. Cataplexy can be subtle, such as briefly losing grip strength, or severe enough to cause a sudden collapse.

Some people with cataplexy describe sudden and potentially dangerous situations when symptoms occur unexpectedly.

For example, one patient reported losing muscle tone when startled while riding on the back of a motorcycle. When cars pulled up beside them at an intersection, the sudden surprise triggered cataplexy, causing her to lose muscle control and fall from the bike on multiple occasions.

Why is it often misdiagnosed or diagnosed later in life?

Narcolepsy symptoms are similar in women and men. However, research suggests there’s a difference in when they receive a diagnosis.

According to the Society for Women’s Health Research, women typically receive a diagnosis an average of 28 years after symptoms begin, while men receive a diagnosis about 16 years after first experiencing symptoms.

Narcolepsy symptoms typically begin in adolescence or early adulthood. Because teenagers often have irregular sleep schedules, early symptoms such as excessive sleepiness may be dismissed as improper sleep habits rather than a neurological condition.

Narcolepsy is also commonly misdiagnosed because its symptoms overlap with those of other conditions, including depression. Fatigue, excessive sleepiness, and difficulty sleeping can occur in both conditions.

This overlap may be especially relevant for women, who are about twice as likely as men to be diagnosed with depression. As a result, narcolepsy symptoms in women may be attributed to mental health conditions rather than evaluated as a sleep disorder.

What type of effect do hormones have on narcolepsy and being diagnosed?

Female hormones likely play a significant role in narcolepsy symptoms and the timing of diagnosis. Women experience hormonal changes during the menstrual cycle, pregnancy, the postpartum period, and menopause.

These hormonal shifts may worsen, change, or mask narcolepsy symptoms, making them harder to recognize. Symptoms such as fatigue, excessive sleepiness, mood changes, and disrupted sleep patterns can overlap with expected hormonal changes, potentially delaying diagnosis or leading symptoms to be attributed to other causes.

Are there any unique treatment options, management strategies, or support services available specifically for women?

At this time, there are no treatment options, management strategies, or support services designed specifically for women with narcolepsy.

That said, awareness matters. Healthcare professionals who understand how narcolepsy may present differently in women, and how hormonal changes, caregiving roles, or diagnostic delays can affect care, may be better equipped to support women with this condition.

Increasing awareness of these differences is a crucial step in improving diagnosis, treatment, and overall care for women living with narcolepsy.

Thomas Johnson is a physician assistant who specializes in pulmonology and sleep medicine. He has been a full-time practitioner since 2004. He treats many diseases, including COPD, asthma, obstructive sleep apnea, and narcolepsy. He is part of a large group practice in northwestern Pennsylvania.