What Are the Long-Term Effects of Narcolepsy?

Disease burden is a term doctors use to talk about how much an illness impacts a person’s life. It will come as no surprise to anyone with it that narcolepsy carries a high disease burden. This means narcolepsy has a large impact on people’s school, career, and overall health.

Among the many challenges people with narcolepsy face are:

• Higher healthcare costs
• Higher rates of unemployment and lower wages when working
• Mental health issues
• Brain fog and problems concentrating that interfere with school and work
• Relationship problems and awkward social interactions
• Problems with physical intimacy
• Obesity
• Type 2 diabetes
• High blood pressure
• Sleep apnea

Higher healthcare costs

Studies in the United States and Europe show that people with narcolepsy spend more on medical care than healthy people or people with other types of long-term illnesses. The main reasons healthcare is more expensive for people with narcolepsy are:

• More frequent doctor, hospital, and emergency room visits
• Expensive drugs for treatment

In fact, one U.S. study found that people with narcolepsy visited the doctor, hospital, and ER twice as much as other people. This resulted in $8,346 in medical costs and $3,356 for drugs each year.¹

Work issues

Daytime sleepiness, brain fog, and forgetfulness are common with narcolepsy but tend to create problems at work. This is why people with narcolepsy often face unemployment, underemployment, low wages, and early retirement.

People with narcolepsy also miss more days of work and go on short- and long-term disability often more than other workers. All this leads to poor lifetime earnings and may cause depression, anxiety, and social stigma.

A Danish study found that those who were working earned less than other people, and sleep attacks often led to early retirement. One out of 3 people in the study reported they were unemployed because of their narcolepsy.^2,3

Mental health issues of narcolepsy

Mental health is especially challenging for people with narcolepsy. Studies have found that people with the condition may have depression and anxiety at rates 2 to 4 times higher than other people. Some studies also point to higher rates of attention deficit hyperactivity disorder (ADHD), bipolar disorder, and schizophrenia than the general population.⁴

What is the link between narcolepsy and mental health? First, doctors may mistake daytime sleepiness and fatigue for symptoms of poor sleep habits or depression. Hallucinations may be mistaken for a serious mental illness, and sleep attacks may be mistaken as epilepsy. Without a correct diagnosis and treatment, problems at school, work, and in relationships build, leading to depression and anxiety.⁵

Problems adjusting to a narcolepsy diagnosis and its treatments may also increase anxiety. Those with untreated narcolepsy tend to avoid social outings, which lowers quality of life. One study found that people with narcolepsy had a harder time adjusting to their illness than people with heart problems, cancer, or diabetes.⁶

Heart health and narcolepsy

People with narcolepsy have higher rates of high blood pressure and other issues related to heart health than their peers. One study found about half of those with type 1 narcolepsy had high blood pressure, even in their 30s. Doctors do not fully understand why, but it may be partly due to the long-term use of stimulants and other drugs to control narcolepsy symptoms.⁷

People with narcolepsy also have higher rates of sleep apnea, obesity, and diabetes, which also strain the heart and blood vessels. In fact, being overweight or obese is very common with narcolepsy. Doctors believe this is mostly the result of chemical changes in the body (loss of the hormone hypocretin) that cause narcolepsy.^5,7

Weight gain can happen even without eating more because low levels of hypocretin slow how the body processes calories. This is why doctors recommend regular exercise and low-calorie diets for people with narcolepsy.^5,7