People with narcolepsy of any type experience eating disorders at a higher rate than the general population. Among those, people who have narcolepsy with cataplexy (type 1 narcolepsy) have the highest prevalence of such eating disorders. (Cataplexy is when your full body involuntarily goes entirely limp or otherwise becomes temporarily paralyzed.)

Eating disorders are disturbances in a person’s behaviors, thinking, and emotions related to food intake and body image. The eating disorders connected to narcolepsy primarily include uncontrollable cravings for foods and binge eating. All eating disorders are serious conditions that can become life-threatening. Eating disorders can be caused by complex biological and psychological risk factors. People of all different body weights and demographics can have eating disorders.

Common eating disorders include:

• Anorexia nervosa — Severe restriction of eating
• Bulimia nervosa — Perceived or actual overeating and binge-eating followed by purging via self-induced vomiting, laxatives, or intense exercise
• Binge eating — Perceived or actual out-of-control excessive eating without purging

Narcolepsy is a sleep disorder that causes hypersomnia — excessive daytime sleepiness — and an abrupt onset of sleep. Type 1 narcolepsy includes periods of cataplexy. Type 2 narcolepsy refers to someone with narcolepsy who doesn’t have cataplexy. Some people with narcolepsy may experience hallucinations or temporary sleep paralysis upon falling asleep or waking up. Narcolepsy is a chronic condition that is typically managed with medication and changes in a person’s lifestyle.

The connection between narcolepsy and eating disorders is not fully understood. It is, however, believed to be linked to degenerating brain neurons (nerve cells in the brain).

Neurological Factors With Narcolepsy and Eating Disorders

Neuropeptides are neurons in the hypothalamic region of your brain. Neuropeptides send messages that prompt your nervous system into action. Automatic bodily functions that are not consciously controlled, like breathing, are controlled by neuropeptides. People with type 1 narcolepsy are deficient in hypocretin (also called orexin), a neuropeptide in the hypothalamus. Hypocretin regulates your sleep, arousal, and appetite. Both people with narcolepsy and eating disorders have been found to be short on hypocretin.

Along with sleep disturbances, problems with appetite regulation have been found in people with type 1 narcolepsy. One study looked at how sated — full after eating — 24 participants with type 1 narcolepsy felt compared to 33 participants without narcolepsy. When given snacks freely during testing time, those with diagnosed narcolepsy ate four times as much as their counterparts.

That led the study’s researchers to conclude that hypocretin deficiency may interfere with a person’s goal-oriented behavior as well as their appetite. Why? Because hypocretin affects a number of different hormones and neurotransmitters. Their findings suggested that hypocretin deficiency in people with type 1 narcolepsy may be disrupting the brain signals that recognize the consequences of a person’s eating behavior, such as binge eating.

Body Weight and Eating Disorders

People with narcolepsy have a high rate of obesity. In fact, one Dutch study of nearly 138 people with narcolepsy reported they were 33 percent more likely than the general population to be obese. And while binge eating or overeating and sedentary lifestyle can contribute to obesity, there are other factors. For example, hypocretin deficiency is associated with low metabolism — the rate our bodies use energy and burn calories. Low metabolism is connected with having a higher weight and body mass index (BMI).

Rapid weight gain is also linked to narcolepsy, especially among children. Harvard Medical Center cites one study that looked at children with narcolepsy. At the onset of their narcolepsy, the study found the children gained anywhere from 10 to 40 pounds over a few months.

However, eating disorders can also occur among people with narcolepsy regardless of their BMI. Disordered eating symptoms (like an anorexic’s extreme dread of gaining weight and self-imposed eating restrictions) also occur at higher rates among people with narcolepsy.

Nocturnal Eating and Narcolepsy

Narcolepsy can go hand in hand with compulsive behavior. Take, for instance, nocturnal eating — eating in the middle of the night. Considered a sleep-related eating disorder (SRED), nocturnal eating is compulsive and involuntary. It can occur in someone with narcolepsy if they are sleepwalking.

People who experience spells of SRED are associated with having morning anorexia. (Morning anorexia is an eating disorder in which someone won’t eat early in the day.) Females with type 1 narcolepsy commonly have SRED. And these same females also have higher rates of bulimia. (Bulimia is overeating followed by self-induced purging, fasting, or extreme exercise.)

People who experience incidents of SRED often have no memory of their eating episodes. The condition can be dangerous when they don’t properly prepare what they eat while in a state of sleep or if they ingest something outright toxic.

Managing Eating Disorders With Narcolepsy

People with eating disorders often feel shame about their eating habits. Shame can lead them to hide their eating behaviors from others. Because all eating disorders can result in serious mental and physical health problems, it’s essential to talk to a doctor about them.

You can get support to manage your condition. Eating disorders are typically treated with psychological and nutritional counseling. In some cases, psychiatric medicine (such as antidepressants) may be used to treat a person’s eating disorder.

If you have narcolepsy and believe you may have an eating disorder too, let your health care team know. That way, your doctor can do a thorough medical review to determine if you have an eating disorder (or not), and suggest the best treatment. It is important that any treatment for an eating disorder syncs with your narcolepsy treatment plan. (That includes any sleep medicine you might be taking, like stimulants, antidepressants, or sodium oxybate.)

Ongoing neurology and psychiatry research is aimed at developing hypocretin replacement therapies. Such therapies would be able to treat both the underlying cause of a person’s disorderly sleep and eating disorders in people with narcolepsy.

Talk With Others Who Understand

On MyNarcolepsyTeam, the social network for people with narcolepsy, more than 8,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.

Do you live with narcolepsy and have questions about eating disorders? Share your experience in the comments below, or start a conversation by posting on MyNarcolepsyTeam.