While people with narcolepsy are often able to control their sleep attacks, there are still many dangers. Safety is a concern since the person may fall asleep, be unable to respond, or fall down in the middle of life activities. Here are some tips to reduce the risks of living with narcolepsy.
Act early
See a doctor as soon as you start having symptoms. The sooner treatment begins the sooner you can begin preventing falls, problems concentrating, depression, weight gain, and other side effects of narcolepsy. The earlier children are diagnosed and treated, the easier it is to prevent learning and behavioral issues.1
Know yourself
You will probably know better than anyone what times of day and activities work best for you or what triggers your cataplexy. This will help you schedule classes or work activities at times of the day when you are most alert. It will also help you schedule naps to boost your ability to stay awake during important activities such as driving, cooking, or taking tests.1
Get a narcolepsy service dog
Certain dogs can be trained to detect when a sleep attack will happen several minutes before it occurs. The dog then alerts the person with a bark, nudge, or lick. This gives the person time to sit or lie down in a safe place. A narcolepsy service dog can also fetch medicine, stand over their person to prevent crime, act as a soft landing spot, or wake their person with a lick.2-3
Safety while driving
Sleep attacks often occur without warning in people with narcolepsy. These episodes can last for seconds to minutes which is especially dangerous while driving. Several studies have found that more than half of people with narcolepsy have fallen asleep while driving, and over one in three have had an accident.4
You can reduce this danger by:1,4,5
- Paying close attention to your sleepiness level and avoiding driving during these times
- Pulling over in a safe place for a short nap if you get sleepy while driving
- Taking a short nap before getting behind the wheel
- Avoiding long drives and highway drives
- Not driving after a meal or after a certain time in the evening
- Only driving for 30 minutes or less
Figure 1. Safe driving tips
Some people with narcolepsy may not be able to drive at all. Your doctor may order a maintenance of wakefulness test (MWT) to see how well you can stay awake during boring times like driving.5
You should also know the laws in your state. Some states restrict people with narcolepsy from driving, similar to epilepsy. You may be able to drive if you carry a letter from your doctor stating that your narcolepsy is treated and under control.4-5
Safety around the house
Between 30 percent and 50 percent of people with narcolepsy have accidents or near-accidents while cooking, smoking, crossing the street, or holding a baby. If you have occasional sleep attacks, you may need to avoid certain household activities altogether. This may include cooking, climbing ladders, walking down stairs, getting on the roof, swimming alone, taking a bath, or using dangerous tools.4-5
Tell others so they can help
Even if your narcolepsy is well controlled, consider sharing your diagnosis with the people who are around you often. Talk with them about the basics of narcolepsy and what to do if you have a sleep attack. This allows friends, coworkers, supervisors, teachers, and neighbors to protect you and do what you need to get through an episode safely. It also helps them react with understanding rather than fear or judgment.1
Wearing a medic alert bracelet can also be helpful if a sleep attack occurs around strangers.
