Tips and tricks to manage your day to day
When living with narcolepsy, you can take care of daytime sleepiness by receiving treatment from a doctor who specializes in sleep medications. It also helps you practice healthy habits, such as having a bedtime schedule, planning short naps, and eating a balanced diet.
You can also do more to stay cool and alert. Here are some simple tips from sleep doctors who have treated people with narcolepsy.
Plan your week in advance
Do you usually feel more sleepy during a certain time of day, such as mid-afternoon? If so, try scheduling important activities away from him, says Ronald Chervin, MD, director of the Michigan Medicine Sleep Disorders Centers.
If you have to do something that requires a high level of thinking or performance during a more sleepy part of the day, take a 15-20 minute nap first.
“That will help you get through it,” says Chervin. “And for a good number of people, it’s pretty much the same as taking a short-acting stimulant drug.”
Also, try to avoid overselling to make sure your activities don’t affect your sleep at night, says Abhinav Singh, MD, medical director of the Indiana Sleep Center.
“Take the time to recover from an evening commitment,” he says. If possible, don’t book important events or tasks for the next morning.
Work with your doctor to make sure you are safe when you get behind the wheel.
“If you have a history of drowsiness while driving, you should not drive until your sleep doctor has addressed and improved it,” says Chervin. “Borrow a trip, do what you need for 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 that people with narcolepsy are more prone to car accidents, in part due to lapses in reaction time that can occur when you feel drowsy.
Once you control your narcolepsy symptoms with treatment, you can take some additional steps to drive safely.
If you think there is a chance that you might get sleepy during a shorter trip, take a 15 to 20-minute nap before hitting the road to feel more alert, says Chervin. You might also consider using a ride-sharing service.
Singh recommends these tips for a long road trip:
- Let your loved ones know where you are going.
- If you drive alone, ask someone to track your phone to monitor your progress.
- Bring your narcolepsy medicine.
- Make sure you are well rested and not sleep deprived before getting behind the wheel.
- Don’t eat heavy meals or drink alcohol.
- Stop for breaks.
- Drive in the daylight. Spend the night in a motel or hotel.
- If you must drive at night, travel with someone else and ask them to take over at night.
- Take a little nap while your driving partner has the wheel.
Manage muscle weakness
Some people with narcolepsy also have brief episodes of muscle weakness or paralysis called cataplexy. When you have both conditions, doctors call it type 1 narcolepsy.
An episode of cataplexy usually comes on quickly and builds up for several seconds. If it’s severe, it can cause someone to fall to the ground, says Chervin. But it is highly unlikely that you will collapse and fall flat on your face, which can be a common mistake.
Many people with type 1 narcolepsy experience subtle symptoms of cataplexy, such as bent knees, a drooping jaw or eyelids, and slurred speech, Singh says.
A strong emotional stimulus, such as laughter or surprise, is usually what triggers it.
Once you know your cataplexy triggers, you can tell your family and friends about them, Singh says. For example, you might say, “‘Hey, don’t tickle past a certain point.’ … Or ‘Don’t bring up our inside joke in a situation out of context, because it will make things uncomfortable for me.’
Educate yourself and others
Learn all you can about narcolepsy, says Singh. “It is essential to know the diagnosis in its entirety and all the characteristics.”
Once you’ve educated yourself, it’s important to explain the condition to your family and close friends, he says. In return, they can offer you emotional support and an extra hand when you need it.
Also have a conversation with your employer or school. “Many employers, if they are educated, make accommodations easily and voluntarily,” 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 you started. They can help explain to your employer or school how small accommodations can make you even more productive.