The jury is out on exactly why we sleep, though several theories exist to explain sleep’s biological function. One thing is certain: adequate sleep is as vital for our health as nutritious food and clean water. The chronically insufficient sleep that defines life with narcolepsy is a threat to one’s overall health.
Narcolepsy is a neurological disorder and sleep disorder that causes excessive daytime sleepiness (EDS) and cataplexy — sudden attacks of muscle weakness. Other narcolepsy symptoms include vivid, dream-like hallucinations and sleep paralysis. Between 135,000 and 200,000 people in the United States are living with narcolepsy. Due to the common misdiagnosis and underdiagnosis of the condition, that number is thought to be much higher.
Narcolepsy alone can take its toll on one’s health. Narcolepsy also increases a person’s risk for several other co-occurring health conditions. If a person with narcolepsy has one or more other health conditions, the toll is exponentially greater.
The positive effects of sleep are not just for your physical health. Regular sleep ensures proper function of hormones, your immune system, and your mental health. Insufficient high-quality sleep on a regular schedule increases the risk of high blood pressure (hypertension), cardiovascular (heart) disease, type 2 diabetes, mood disorders, and eating disorders.
A wholesome diet and exercise decrease the risk of commonly co-occurring conditions (comorbidities) and improve the symptoms of narcolepsy. Nutrition and exercise are important to ensure healthy functioning in all aspects of your life, as well as living better with narcolepsy.
When people know narcolepsy’s frequent comorbidities and recognize their symptoms, it’s easier for them to talk to their doctors about holistically addressing their health. Lowering the risk for — and promptly treating — comorbidities can extend and improve quality of life.
Living with narcolepsy requires being careful about what you eat and when you eat it — eating more of some foods while totally avoiding others. People with narcolepsy should avoid caffeine or alcohol for several hours before going to sleep. They should also avoid large, heavy meals right before bedtime; eating very close to bedtime can make it harder to sleep.
People with narcolepsy are at higher risk for being overweight or obese. Studies show an association between short sleep duration and excess body weight — especially in children. Inadequate sleep can make us feel hungrier, increase cravings for sweet foods, and increase the amount of food we buy while grocery shopping. People with narcolepsy also tend to have slower metabolisms. Poor sleep can affect your hormone levels, which can influence your appetite. Your sleep may also affect how much exercise you get throughout the day.
Sugar and carbohydrates tend to supply quick jolts of energy that wear off fast. Limiting sugar and other simple carbohydrates (processed and grain-based foods) may help manage both narcolepsy symptoms and weight. A ketogenic diet is a strict food regimen that minimizes carbohydrates and sugars, and it is sometimes prescribed to people living with hard-to-treat epilepsy. It has also proven beneficial to some people with narcolepsy. Fermented foods such as kombucha, kimchi, natural yogurt, and sauerkraut contain lactate, a biochemical used by the hypocretin system.
Narcolepsy is associated with low (or undetectable) levels of hypocretin. Hypocretin, also called orexin, controls wakefulness and helps regulate appetite. A diet that might increase orexin could benefit some people with narcolepsy.
There is increasing evidence that narcolepsy is an autoimmune disorder. Foods that fight inflammation may help counteract the autoimmune effects of the condition. Foods high in B vitamins, such as bananas, fish, avocados, chicken, and dark-green leafy vegetables, may also be beneficial. Studies show that B vitamins can help relieve stress by regulating nerves and brain cells.
Exercising, eating well, and maintaining a healthy weight go a long way toward managing narcolepsy’s symptoms and maintaining good health overall. Exercising for at least 20 minutes per day improves sleep quality and can help maintain a healthy weight. Exercise helps regulate the metabolism and reduces the risk and impact of obesity and weight management issues that frequently accompany narcolepsy.
It’s important to know your narcolepsy symptoms and their severity. Sometimes exercise, if too stimulating, can trigger cataplectic episodes. It’s a good idea to start off light, with some yoga or a walk, until you’re sure how the physical activity impacts your symptoms.
Studies suggest that a severe reduction of hypocretin may discourage exercise in people living with narcolepsy, but exercise may promote wakefulness. The decrease in exercise is likely because narcolepsy causes EDS and could decrease motivation.
The benefits of exercise on sleep quantity and quality can be twofold. Exercise can stimulate a person and help them stay awake. Exercise can also tire a person and help them get a good night’s rest. When living with narcolepsy, the timing of physical activity is something to keep in mind. Avoid exercising within four to five hours before bedtime.
Narcolepsy takes a heavy toll on a person’s quality of life. Being diagnosed with and managing narcolepsy is stressful, as is managing the conditions commonly linked to narcolepsy. Exercise relaxes your muscles, reduces stress, and improves mood. Physical activity raises the levels of endorphins, or “feel-good” chemicals, in your body — which is a mood booster.
Taking care of your mental health is especially important when living with narcolepsy. Cognitive behavioral therapy (CBT) is a commonly used, effective, talk-therapy method. For people with narcolepsy, CBT may help with many aspects of the condition, including improving sleep hygiene, managing stress, learning coping skills, and building emotional resilience. CBT is used to treat a wide range of issues, including disorders similar to narcolepsy like hypersomnia and depression.
Meditation is a period of stillness (of both body and thought). Mindfulness is an intentional focus on the present moment. Mindfulness and meditation are accessible and free practices which have been shown to relieve stress. Both can improve mental health overall, and depression and anxiety symptoms more specifically. Studies show that meditation can help lower stress. In addition to traditional medical treatments, meditation also may help improve anxiety and may lower blood pressure.
The following tips can help you manage stress, control anxiety, and encourage positive mental health improvements:
Proper sleep keeps you alert and helps you to react quickly. Sleep helps you excel at school and at work. Without sleep, you can’t learn things or create new memories. Sleep sharpens your mind so you can think clearly. Without healthy sleep, you are more likely to be forgetful and make mistakes. Without enough rest, you are also more likely to have an accident while driving or at work.
Some medications and supplements can dangerously interact with narcolepsy treatments. Always make sure your health care provider is aware of every medication you are taking for every condition, whether it is available over the counter or by prescription, including any vitamins or herbal supplements. Treatments for narcolepsy can come with negative side effects. Most drugs for narcolepsy, both those approved by the U.S. Food and Drug Administration (FDA) and those used off-label, carry a risk of abuse, addiction, and dependency. In fact, only one FDA-approved drug for narcolepsy is not a controlled substance: Wakix (pitolisant).
Sleeping is so important that the average human spends about one-third of their time doing it. Not only is the quantity (number of hours) of sleep you get important, so is the quality of sleep and the regularity of your sleep cycle. Maintaining healthy mood, diet, and exercise can improve sleep quality — a critical treatment goal for people with narcolepsy. Good sleep improves overall health, increases productivity, and betters quality of life.
Consistent, ample, high-quality sleep and integrated treatment are key to managing life with narcolepsy. Despite the fact that people with narcolepsy have excessive daytime sleepiness, they often sleep poorly at night. Therefore, sleep is a primary focus in decreasing symptom severity and minimizing the risk of comorbidities. Exercise can reduce sleepiness and improve sleep quality. Here are some helpful tips for improving your sleep:
There are many adverse effects of insufficient sleep and serious health conditions linked to narcolepsy. It should come as no surprise that poor sleep can be associated with lower life expectancy.
If you suspect you have a sleep disorder like narcolepsy, seeking prompt diagnosis and treatment is important. When living with narcolepsy, it’s even more important to get any and all health problems under control and get ongoing care for these conditions.
Living a healthy life with narcolepsy requires an integrated approach to treatment and care. Ideally, a treatment team will comprise a sleep specialist, a general practitioner, and — depending on any comorbidity diagnoses — other specialized health care providers working together towards your whole-health goals. Communicate early, often, and openly with all providers on your health care team.