Narcolepsy is a chronic sleep disorder characterized by excessive daytime sleepiness (EDS) and cataplexy (sudden episodes of muscle weakness). People living with narcolepsy may have particular challenges with diet and nutrition. Sleep problems can disrupt hormones that affect appetite, and extreme fatigue can make it difficult to choose healthy foods during the day. Taking naps may disrupt normal meal frequency, which can affect meal regularity and metabolism as well.

There are meal-planning strategies and lifestyle changes people with narcolepsy can use to improve health and manage symptoms. Always consult your doctor before making changes to your diet.

Maintaining a Healthy Weight With Narcolepsy

Obesity and narcolepsy can be closely related. Individuals with narcolepsy may have a body weight between 15 percent and 20 percent higher than expected on average in the general population. Some evidence suggests this could be related to both lower resting energy expenditure (the amount of calories you burn at rest) as well as eating behaviors (disordered eating, such as binge eating or food avoidance).

Lack of sleep can create hormone disruption that may contribute to weight gain as well. Hypocretin (also called orexin) is a brain chemical that regulates wakefulness and appetite. Hypocretin deficiency is linked with narcolepsy, and may decrease basal metabolic rate and food intake. However, more research in humans needs to be done to determine whether this is a direct result of hypocretin deficiency or other causes.

Below are some healthy eating basics that can help improve health and wellness.

Meal Planning

Planning meals can start very small. For example, you might just pick out a couple of recipes to make for dinner and plan to have leftovers on the other days. You can focus just on breakfast to begin with, and slowly advance toward planning breakfast and lunch for each day of the week. The most important step is to start with small and realistic goals. Choose meals that are easy to make and that you do not tire of easily.

Grocery Shopping

A good way to organize your grocery shopping is to always make a list first. Consider including pantry staples such as beans, peanut butter, nuts, and whole grain or chickpea pasta. Then add fresh or frozen fruits and vegetables; lean protein like salmon, shrimp, or poultry; and low-fat dairy. You can shop at the grocery store or use grocery pickup. You can also consider companies or farms that deliver produce boxes.

Meal Preparation

The keys for successful meal preparation are similar to those for meal planning. Focus on just one or two recipes per week at first. Utilizing kitchen tools like crockpots can create flavorful meals with minimum effort. Another good tip is to use frozen foods. Frozen vegetables are picked at peak ripeness, meaning they sometimes contain more vitamins and minerals than fresh vegetables. Foods such as zucchini noodles, butternut squash noodles, and cauliflower rice are all sold frozen and can help make low-calorie, healthy meals more convenient. Some lean proteins that are easy to cook include frozen, cooked shrimp; frozen, cooked chicken tenders; and veggie burgers.

Diabetes and Narcolepsy

Obesity and disrupted sleep are two risk factors for type 2 diabetes. Type 2 diabetes is a chronic disease associated with the metabolism of carbohydrates. When you digest carbohydrates, they turn to sugar in your bloodstream. The human body produces a hormone called insulin that takes sugar out of the blood and into the cells, resulting in a stable blood sugar. However, in type 2 diabetes, the body does not produce enough insulin — or becomes resistant to insulin — resulting in undesirably high blood glucose levels.

Type 2 diabetes can be managed with diet and exercise, but with most cases it requires medication. The most important nutrition focus in a diabetic diet is to limit carbohydrates. Carbohydrates are found in fruit, grains, starchy vegetables, legumes, and dairy.

Low-Carb Diets for Narcolepsy

Low-carbohydrate diets are popular amongst individuals seeking treatment for narcolepsy. Carbohydrates turn to glucose (or sugar) in the bloodstream, which raises blood glucose levels.

Consuming a large amount of carbohydrates in one sitting can create drowsiness and make it difficult to develop a normal sleep and wake cycle, as well as maintain adequate energy during the day. Choosing complex carbohydrates like berries, whole grains, legumes, and sweet potatoes can help normalize sleep patterns. Minimizing processed foods and added sugar can improve sleep quality as well.

There is speculation that a “keto” or ketogenic diet, which is a low-carbohydrate, high-fat diet, may help with sleep, but research has not shown significant improvements in sleep when compared with a high-carbohydrate diet. Some research has shown that a keto diet can improve sleep structure and decrease daytime sleepiness, but this was only present when weight loss occurred. It is unclear whether these benefits were from the keto diet or from the weight loss itself.

While the research on the keto diet is mixed, some MyNarcolepsyTeam members have experienced improvements on the diet. “I crash far less at work and there is very little nodding at work,” one member said.

The Atkins diet is another popular low-carbohydrate diet. To date, there is no significant data demonstrating that an Atkins diet can improve narcolepsy.

Your doctor, a sleep specialist, or a nutritionist can help you understand if adopting a specific diet plan can help you better manage your narcolepsy.

Caffeine and Narcolepsy

Drinking coffee or other caffeinated beverages can help some people with narcolepsy manage excessive daytime sleepiness. “I drink Cuban coffee in the mornings and it helps stave off the sleep bouts until around 1 in the afternoon,” one member shared. While coffee can be helpful, it can also cause stomach problems, jitteriness, anxiousness, and accelerated heartbeat. One MyNarcolepsyTeam member commented, “I had been using caffeine for the last several years and it causes my legs to be too restless.”

For those who find caffeine helps them, stopping caffeine intake four to six hours before bed can help prevent it from interfering with nighttime sleep.

Other Lifestyle Changes

The following lifestyle changes can help manage narcolepsy symptoms.

Exercise

A half-hour of moderate aerobic exercise a day can help you fall asleep faster and improve the quality of your sleep. Some examples of moderate aerobic exercise include brisk walking, bike riding, and water aerobics. Exercise should be completed one to two hours prior to bedtime.

Meal Timing

In addition to what you eat, when you eat and drink can impact your sleep. Finishing meals a few hours before bed and avoiding meals that tend to cause indigestion can help improve sleep. Managing your fluid intake can also prevent you from being up at night due to thirst or trips to the bathroom.

Meal timing can also impact your alertness throughout the day. “I wake up about 9 a.m. and don't have my first meal till about 12 to 1 p.m.” one member shared. “That way I get the morning in to do whatever I need to do, and I'm alert enough usually to even drive if need be. Then after my first meal, the sleep attack comes on hard and that triggers my noon nap.” The meal timing that works for you may be very different from what works for another person with narcolepsy.

Avoiding Alcohol and Smoking

While some people think having a glass of wine before bed may help them fall asleep, research shows that alcohol disrupts a normal sleeping pattern. Alcohol interferes with your circadian rhythm and produces a lower quality sleep by blocking your rapid eye movement (REM) sleep cycle, which is the more restorative cycle of sleep. Smoking cigarettes can also disrupt sleep.

Stress Management and Sleep Hygiene

Creating a healthy bedtime routine is an important component to dealing with narcolepsy. This includes techniques such as going to bed at a consistent time each evening; having a clean, dark bedroom; and incorporating stress-coping mechanisms so you do not take your worries to bed with you.

By joining MyNarcolepsyTeam, the social network and online community for those living with narcolepsy, you gain a support group of people who understand your experiences.

Have you made changes to your eating habits to help manage your narcolepsy? Share your experiences in the comments or on MyNarcolepsyTeam.