Living With Narcolepsy

Narcolepsy is a lifelong condition. Although there is no cure for this condition, symptoms often improve with ongoing treatment. Most people with narcolepsy can live near-normal lives. The condition can be dangerous if sleep attacks or sudden loss of muscle tone occur while driving or using machinery. Even when these episodes occur at other times, they can cause injury or impair performance in school and on the job. To help avoid harm, try to:

• Avoid being alone when you are likely to have a sleep attack.
• Take a nap before those times during the day when an attack is likely.
• Safeguard your home and workspace.
• Seek help from family, friends, coworkers, and your doctor.
• Take your narcolepsy medicine on a schedule that will help lessen the risk that you will have severe side effects while you are alone.

Driving

Driving can be dangerous for people with narcolepsy. You need to take special care to help prevent crashes:

• Take medicines as prescribed.
• Ask your doctor if you can drive safely.
• Plan to drive when you are least likely to have a sleep attack or other narcolepsy symptom that could be dangerous while driving.
• Take naps before driving.
• Stop regularly during a long drive and exercise during the stops.
• Consider driving with family, friends, or coworkers or getting rides from them.

Work

People with narcolepsy can work in almost all types of jobs. It may be best if you have a flexible work schedule so you can take naps when needed. It also helps to have a job where you interact with your coworkers. Try to avoid jobs that require you to drive or have long commutes to work.

The Americans with Disabilities Act (ADA) protects the employment rights of people who have disabilities, including narcolepsy. The ADA requires employers to reasonably accommodate the needs of their workers with disabilities. For workers with narcolepsy, these accommodations may include:

• Allowing short naps during the workday
• Adjusting work schedules around sleepy periods
• Alterations to the workspace or job duties

Workers must tell their employer that they have narcolepsy to get these accommodations.

Employers with more than 50 workers are also covered by the Family and Medical Leave Act. This law allows preapproved leave without pay to care for yourself or a family member with narcolepsy. The Social Security Disability Insurance or Supplemental Security Income programs may also help you if you cannot work due to your narcolepsy.

Finding Emotional Support

Sudden sleep attacks or loss of muscle tone can be embarrassing. This can make you avoid getting together with friends, schoolmates, or fellow workers, and it can cause low self-esteem. People with narcolepsy may also feel they have no control over their behavior and may become depressed. To get emotional support for narcolepsy, you can:

• Work with your doctor to better manage your symptoms and emotional problems if you have any.
• Change your lifestyle to minimize symptoms.
• Learn about narcolepsy, and tell your family and friends about the condition.
• Seek professional counseling for yourself and your family.
• Get involved with patient support groups such as the Narcolepsy Network.

School-Aged Children

Narcolepsy symptoms can affect learning by limiting children’s ability to study, focus, and remember. Children with narcolepsy are sometimes mistakenly thought to have a learning disability or a seizure disorder (epilepsy). When tired, some children with narcolepsy tend to speed up their activities, rather than slow down. These children can be mistakenly labeled as hyperactive.

You might want to tell your child’s teachers and school administrators about the child’s narcolepsy. It is also helpful to tell the school nurse about the condition and the medicines your child takes for it. Together you can work out a place to keep the medicines and a schedule for taking them at school. You also might want to check with student services about special education and other services, if needed, to help your child with narcolepsy.

Pregnant Women

If you have narcolepsy and are pregnant or considering getting pregnant, you should talk to your doctor about the effect your narcolepsy medicine can have on the baby before and after delivery. You also might want to discuss with your doctor your chances of having a child with narcolepsy.