In a recent survey of MyNarcolepsyTeam members, survey respondents shared the impact narcolepsy can have on quality of life. They discussed difficulties concentrating, performing everyday chores, working, and having an active social life.

They also shared the most troubling symptoms of their sleep disorder, ranging from excessive daytime sleepiness (EDS) to nighttime sleep disturbances.

Surveyed members also shared their hope for a narcolepsy treatment to help them live more productive lives, stay awake during the day, and get a better night’s sleep.

What Was on the Survey?

MyNarcolepsyTeam conducted a survey with 110 members in the United States who were diagnosed with narcolepsy.

The survey asked members about:

• The impact of narcolepsy on their quality of life
• The most troubling symptoms they experience
• The benefits they hope to get from narcolepsy treatments

MyNarcolepsyTeam shares the results of member surveys so our community can learn, collectively, from each other’s experiences.

Key Finding: Only 3 Percent Say Narcolepsy’s Impact Is Not Very Severe

More than half of survey respondents (54 percent) reported that having narcolepsy has had an extremely or very severe impact on daily life. Just 3 percent reported that narcolepsy’s impact on their daily life was not very severe.

Key Finding: Vast Majority Report Mental Health and Social Challenges

The vast majority of survey respondents reported that narcolepsy negatively impacts several areas of their lives. A large majority, 92 percent, of respondents reported that narcolepsy makes it hard to concentrate, with 85 percent saying it’s hard to do everyday chores. Narcolepsy also interferes with work for 88 percent of respondents, while 86 percent said it disrupts their social life.

Those surveyed also shared their mental health challenges, including feeling isolated (83 percent), depressed (81 percent), or anxious (80 percent).

One survey respondent wrote, “So tired of being tired. Restfulness is nonexistent. Depression is growing over time.”

Key Finding: 92 Percent Report Excessive Daytime Sleepiness Is Their Most Troubling Symptom

When asked to share their most troubling symptoms of narcolepsy, 92 percent mentioned excessive daytime sleepiness. One MyNarcolepsyTeam member wrote, “I would like to be able to stay awake during the daytime hours.”

Fatigue (79 percent), difficulty concentrating (64 percent), and memory challenges (55 percent) were also high on the list.

Sleep disturbances are also a problem: Forty-six percent cited poor-quality sleep, and 34 percent reported disrupted nighttime sleep as their most troubling symptom.

“I just want to feel normal. Not sleepy all the time,” one MyNarcolepsyTeam member commented.

Key Finding: 79 Percent Experience Cataplexy Attacks Monthly

Among respondents with type 1 narcolepsy, 74 percent are troubled by cataplexy attacks (sudden loss of muscle tone). Seventy-nine percent experience these attacks at least monthly.

Seventy percent of the respondents with type 1 narcolepsy said their cataplexy is triggered simply by being overly tired. Other triggers included anger (48 percent), being startled (46 percent), and even laughter (46 percent).

Key Finding: The Top Treatment Goal Is To Stay Awake During the Day

Members’ top three most desired treatment goals are consistent with the symptoms they most commonly experienced. These include being able to stay awake during the day (77 percent), have increased energy (62 percent), and have improved memory (36 percent). One in three respondents also want a better night’s sleep as one of their top three desired treatment goals, with 22 percent of respondents hoping to be able to sleep through the night.

One member wrote, “My dream is for a treatment that will work where I can wake up and not feel like I was put under anesthesia, where I don’t feel the constant overwhelming sleepiness. That would be wonderful.”

Another member shared, “Narcolepsy takes the control I have over my own wakefulness away. I want to be able to wake up and stay awake, then go to bed at night as expected. I have no routine without treatment. I am never fully asleep or awake. I am a body on autopilot.”

Talk With Others Who Understand

MyNarcolepsyTeam is the social network for people living with narcolepsy. On MyNarcolepsyTeam, more than 10,000 members come together to ask questions, give advice, and share their stories with others who understand what it’s like to be living with narcolepsy.

How do narcolepsy symptoms affect you? Do you experience excessive sleepiness, sleep attacks, or sleep paralysis? Have you found treatment options that help? Describe your experience in the comments below, or start a conversation by posting on your Activities page.