Most people who have narcolepsy have low levels of hypocretin. This is a chemical in the brain that helps promote wakefulness. What causes low hypocretin levels isn’t well understood. Researchers think that certain factors may work together to cause a lack of hypocretin. These factors may include:
- Heredity. Some people may inherit a gene that affects hypocretin. Up to 10 percent of people who have narcolepsy report having a relative who has the same symptoms.
- Infections.
- Brain injuries caused by conditions such as brain tumors, strokes, or trauma (for example, car accidents or military-related wounds).
- Autoimmune disorders. With these disorders, the body’s immune system mistakenly attacks the body’s cells and tissues. An example of an autoimmune disorder is rheumatoid arthritis.
- Low levels of histamine, a substance in the blood that promotes wakefulness.
Some research suggests that environmental toxins may play a role in triggering narcolepsy. Toxins may include heavy metals, pesticides and weed killers, and secondhand smoke. Heredity alone doesn’t cause narcolepsy. You also must have at least one other factor, such as one of those listed above, to develop narcolepsy. Living with narcolepsy can be hard. It can affect your ability to drive, work, go to school, and have relationships. Besides taking medicine, you can do many things to live a safe and fulfilling life.
Driving
Driving can be dangerous for people who have narcolepsy. Ask your doctor whether you can drive safely. To help make it safer for you to drive:
- Take naps before driving.
- This helps some people who have periods of extreme daytime sleepiness.
- Stop often during long drives.
- Stretch and walk around during the stops.
- Try to have family, friends, or coworkers in the car to keep you aware and engaged, or get rides from them.
Working
People who have narcolepsy can work in almost any type of job, but some jobs may be better than others. For example, a job with a flexible work schedule can make it easier to take naps when needed. A job in which you interact with your coworkers can help keep you awake. Jobs that don’t require you to drive or are closer to home also may better suit your needs.
Certain laws may apply to workers who have medical conditions, such as narcolepsy. These laws include the:
- Americans with Disabilities Act (ADA). This law requires employers to reasonably accommodate the needs of their workers who have disabilities. This includes people who have narcolepsy. For example, employers may allow workers to take short naps during the workday or adjust work schedules to avoid sleepy periods.
- Family and Medical Leave Act. This law requires employers who have 50 or more employees to provide unpaid leave to employees who have an illness, such as narcolepsy. This law also gives leave to family members who need time to care for a close relative who has a serious illness.
- Social Security Disability Insurance or Supplemental Security Income programs. These programs may offer financial help if you can’t work because of your narcolepsy.
Emotional Issues and Support
Living with narcolepsy may cause fear, anxiety, depression, and stress. Talk about how you feel with your health care team. Talking to a professional counselor also can help. If you’re very depressed, your doctor may recommend medicines or other treatments that can improve your quality of life. Joining a patient support group may help you adjust to living with narcolepsy. You can see how other people who have the same symptoms have coped with them. Talk with your doctor about local support groups or check with an area medical center. Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.
Narcolepsy in Special Groups
School-Aged Children Children who have narcolepsy may have trouble studying, focusing, and remembering things. To help your child in school:
- Talk with your child’s teachers and school officials about your child’s narcolepsy and the best ways to meet his or her needs.
- For example, your child may need to take naps or walks during the day or tape the teacher’s lessons.
- Talk with the school nurse about your child’s narcolepsy and medicines. Together you can work out a place to keep the medicines and a schedule for taking them at school.
Pregnant Women
If you’re pregnant or planning a pregnancy, ask your doctor whether you should continue taking your narcolepsy medicines. Certain medicines may interfere with your pregnancy.
Sources:
https://www.nhlbi.nih.gov/health/health-topics/topics/nar/livingwith
https://www.nhlbi.nih.gov/health/health-topics/topics/nar/causes
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