About one out of every 2,000 people in the United States are living with narcolepsy. Narcolepsy is a neurological sleep disorder that affects sleep-wake cycles and often leads to symptoms such as sleep attacks, microsleep, excessive daytime sleepiness, cataplexy, sleep paralysis, and fragmented sleep or insomnia. Many medications are available to help treat narcolepsy, but you may find that lifestyle changes and home management strategies are also helpful for dealing with the symptoms and side effects of narcolepsy.
If you have narcolepsy, it might be helpful to keep your body active in small ways. For example, some people may occasionally stand during class or in meetings. Others may do activities with their hands while sitting, which can help ward off microsleep and drowsiness during the day.
Exercise is also a key tool for managing narcolepsy. Performing any kind of daily aerobic exercise for at least 30 minutes has been scientifically proven to help improve nighttime sleep. If you have a full night of sleep, you will likely be more alert the next day.
On top of that, regular exercise may help you boost your mood and help lower your blood pressure. Both of these effects may be beneficial if you face comorbid depression (depression that occurs alongside narcolepsy) or take certain drugs for narcolepsy that may increase the risk of high blood pressure. Exercise also helps with weight management, which may be important if you tend to gain weight with narcolepsy.
Aerobic exercises include:
Be careful not to exercise at least one hour before bedtime, which may interfere with your ability to fall asleep.
Many people with narcolepsy find daytime napping useful and rejuvenating. It appears that napping for 15 to 20 minutes is effective for people living with narcolepsy to refresh themselves during the day, especially before doing a task requiring concentration.
However, napping for 30 minutes or longer during the day may affect your ability to sleep that night. That’s why many experts recommend sticking to short naps.
Our bodies have largely evolved to be awake when the sun is out and to sleep during darkness. Research suggests that exposure to natural light during the day is beneficial for sleep, whereas artificial light appears linked to poorer sleep, although the reasons why are not completely understood. Some scientists speculate this difference may have to do with the fact that many of us are exposed to artificial light (including from our screens) intermittently, instead of in regular cycles, like the sun setting and rising. In other words, our bodies appear to like routine.
Regardless of the reason, natural light appears to benefit our sleep cycle. At least 12 to 15 minutes of sun exposure daily also stimulates the body’s natural production of vitamin D, which can also boost mood.
Some MyNarcolepsyTeam members use different tactics to maximize natural light to improve sleep and wakefulness. One member said, “I sleep with my curtains open, so the sun can pour in as often as possible. It helps me wake up a bit better.”
Sleep hygiene approaches essential techniques that can help improve sleep. Working these principles into your daytime and nighttime routine can help you fall asleep, which can help you be more alert during the day. “Good sleep hygiene really does help!” said one MyNarcolepsyTeam member.
Screen time, whether it’s on your phone, tablet, e-reader, or TV, is not a good option while in bed. Making your bed and your bedroom a place of only quiet rest is key to falling asleep. If you can, you may want to leave your phone in another room while you sleep.
Many people find keeping their sleeping area cool, perhaps even with fans or ventilation providing a breeze, can be helpful for sleep. Pick a temperature that is comfortable and calm for you.
Stimulants include tobacco and caffeine. Caffeine is found in coffee, but also in some teas, some sodas, and chocolate. Some people with narcolepsy use stimulants during the day, and that works for them. But if you are having trouble sleeping at night, you may consider not using stimulants during the second half of your day, or even eliminating them.
Going to bed and rising at the same time every day, including weekends, can help give your body the routine it wants. Try creating a nightly routine that you find relaxing:
Choosing enjoyable, relaxing activities can make your nighttime routine something that you look forward to — and therefore want to stick to.
Many people with narcolepsy take medications that promote wakefulness or that help sleep. These medications can include tricyclic antidepressants, amphetamines and other stimulants, and newer treatments like Wakix (pitolisant), which regulates histamine.
If you are having problems with falling asleep or excessive sleepiness, it may be helpful to start keeping a detailed medication log. Take notes for a week on how often, when, and how much of your medications you take. Also, note how much you slept and the quality of your sleep and wakefulness. Then, you can ask your health care team or sleep specialist if they recommend:
For people living with narcolepsy, especially those who experience cataplexy, staying safe at home might mean being creative in assembling a care team. This team could include people who help you wake up from a nap that went too long, who can check on you throughout the day to make sure you are safe, or who you can call if you fall and injure yourself after an episode of cataplexy.
Because the symptoms of narcolepsy can be embarrassing, frightening, or misunderstood by some people, some individuals living with the condition can find themselves facing social stigma, and can live a life of social isolation as a result — which is not good for anyone’s mental health and quality of life.
Sometimes, members of your care team can come from unexpected places. It may also be a good idea to tell your school or employer about your narcolepsy symptoms. Informing others about your condition and your needs means they can better understand how to support you if a sleep attack or cataplexy comes on. With an unpredictable condition like narcolepsy, the bigger the safety team, the better.
MyNarcolepsyTeam is the social network for people with narcolepsy. On MyNarcolepsyTeam, more than 8,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.
What home management strategies work for you? Share your thoughts and experience in the comments below, or start a conversation by posting on your Activities page.