When you live with narcolepsy, you can manage daytime sleepiness by getting treatment from a doctor who specializes in sleep medicine. It also helps with healthy habits, like having a sleep schedule, planning short naps, and eating a balanced diet.
You can also do more to stay fresh and alert. Here are some simple tips from sleep physicians who have treated people with narcolepsy.
Plan your week in advance
Do you tend to feel more drowsy at certain times of the day, such as mid-afternoon? If so, try to plan important activities outside of that, says Ronald Chervin, MD, director of Michigan Medicine Sleep Disorders Centers.
If you must do something that requires a high level of thinking or performance during a sleepier part of the day, take a 15-20 minute nap first.
“It will help you get through,” Chervin says. “And for a lot of people, it’s about the same as taking a short-acting stimulant drug.”
Also, try to avoid overbooking to make sure your activities don’t disrupt your sleep at night, says Abhinav Singh, MD, medical director of the Indiana Sleep Center.
“Give yourself plenty of time to recover from a late night engagement,” he says. Don’t book important events or tasks for the next morning if possible.
Work with your doctor to make sure you are safe when getting behind the wheel.
“If you have a history of drowsy driving, you shouldn’t drive until you have treated and improved this problem with your sleep doctor,” Chervin said. “Take a ride, do whatever you need right now.” Because until we improve you, you don’t want to put yourself or others – whether in your car or on the road – in danger.
Singh agrees. He says people with narcolepsy are more likely to have car accidents, in part because of the reaction delays that can occur when you feel drowsy.
Once your symptoms of narcolepsy are under control with treatment, there are additional steps you can take to drive safely.
If you think there’s a chance you’ll get sleepy on a shorter commute, take a 15- to 20-minute nap before hitting the road to feel more alert, says Chervin. You can also consider using a carpooling service.
Singh recommends these tips for a long road trip:
- Let your loved ones know where you are going.
- If you’re driving alone, have someone track your phone to keep tabs on your progress.
- Bring your narcolepsy medication.
- Make sure you’re well rested and not getting enough sleep before you get behind the wheel.
- Do not eat large meals and do not drink alcohol.
- Stop for breaks.
- Drive in broad daylight. Stay overnight in a motel or hotel.
- If you have to drive at night, travel with someone else and have them take over at night.
- Take a short nap while your driving partner is behind the wheel.
Manage muscle weakness
Some people with narcolepsy also have brief bouts of muscle weakness or paralysis called cataplexy. When you have both conditions, doctors call it type 1 narcolepsy.
An episode of cataplexy usually occurs quickly, accumulating over several seconds. If it’s serious, someone can collapse to the ground, Chervin says. But you are very unlikely to collapse and fall prone, which can be a common misconception.
Many people with type 1 narcolepsy experience subtle symptoms of cataplexy, such as misshapen knees, droopy jaw or eyelids, and slurred speech, Singh explains.
A strong emotional stimulus, such as laughter or surprise, is usually what triggers it.
Once you know the triggers for your cataplexy, you can tell your family and friends about them, says Singh. For example, you could say to them, “Hey, don’t tickle past a certain point. “… Or ‘Don’t bring up our inner joke in a situation out of context, because that would make my life difficult.” ”
Educate yourself and educate others
Learn all you can about narcolepsy, says Singh. “Knowing the full diagnostic and all the features is a must. “
After you go to school, it’s important to explain the disease to your family and close friends, he says. In return, they can offer you emotional support and an extra helping hand when you need it.
Also talk to your employer or school. “Many employers, if they are educated, make accommodations readily and willingly,” says Singh. You can ask for things like short naps or breaks at certain times, or a place to lie down.
A letter from your doctor can get the ball rolling. They can help you explain to your employer or school how small accommodations could make you even more productive.