Is Narcolepsy Slowing My Metabolism?

Narcolepsy is a nervous system disease that affects 1 out of every 2,000 people. People with narcolepsy cannot control when they fall asleep. Sudden sleep episodes can last a few minutes to over half an hour.

Type 1 narcolepsy is caused by low levels of a brain chemical called orexin. Orexin controls how hungry you are and how awake you feel. It also affects metabolism.1-3

The struggle with weight

Many people with narcolepsy are overweight and have slow metabolisms likely due to low orexin. Orexin helps our bodies make “good” fat which keeps us lean. People with narcolepsy also have lower rates of lipolysis. So, people with narcolepsy may have less “good” fat and not break down as much “bad” fat. There may be a link between narcolepsy and diabetes so a healthy weight is encouraged to avoid health problems.4

At least half of all people with narcolepsy, adults and kids, have weight issues. A 2007 study, for example, found 7 of 13 (54 percent) adults with narcolepsy are overweight. Many studies support this statistic. Newly diagnosed people can gain anywhere from 11 to 99 pounds. People with narcolepsy may have a higher body mass index (BMI) and slower metabolisms.2,4,5

What is metabolism?

Your body converts the food you eat into energy. Metabolism is how fast you use this energy. Metabolism can be affected by:6

  • Body size – bigger people need more calories
  • Amount of body fat and muscle – more muscle means more calories burned
  • Sex – men burn more calories
  • Age – calorie burning slows as you get older
  • Lifestyle – active people burn more calories
  • Medical conditions and drugs – some conditions and treatments alter metabolism

The amount of energy it takes to keep your body running is different for everyone. A high metabolism means your body uses a lot of energy to function. You will need a lot of calories to keep your weight steady. Slower metabolisms use fewer calories to keep weight steady. This makes it easy to overeat and gain weight.

How does narcolepsy slow metabolism?

People with type 1 narcolepsy have low orexin. Normal amounts of orexin help you quickly burn calories from food. This makes it easier to stay at a healthy weight.

Low orexin, however, has been linked to obesity. This may be because people with low orexin may not be able to make as much “good” fat. Less “good” fat slows metabolism.4,5

'Good' versus 'bad' fat

Your body makes 2 types of fat: white and brown. When we think of fat, we typically think of white fat.

White fat stores extra calories and causes weight gain. Brown fat uses stored fat as fuel and raises metabolism. Low orexin, and therefore lower amounts of brown fat, could explain why narcolepsy slows metabolism.7-9

Narcolepsy affects how your body uses stored fat

Your body stores fat as triglycerides. When you exercise or fast, your body breaks down these fats for fuel. The breakdown of fats is called lipolysis.

People with narcolepsy have slower rates of lipolysis compared to those without narcolepsy. Having slow lipolysis means more fat remains stored which causes obesity.3

The link between narcolepsy, weight, and diabetes

Narcolepsy may be a risk factor for diabetes because orexin plays a role in controlling blood sugar. A 2013 study shows no link between narcolepsy and diabetes.3

However, more research needs to be done as older studies do suggest a link. Regardless, being overweight raises your risk of diabetes. Overweight people with narcolepsy should be aware of their blood sugar levels.3

Understand how narcolepsy affects eating habits

A 2007 study showed that people with narcolepsy typically ate less than those without narcolepsy. This sounds confusing, but orexin helps us eat more and lose weight at the same time. Low values may upset this balance. This could cause weight gain even though you eat less. Not eating enough further slows metabolism.5,10

Know your risk for eating disorders

One out of every 2 people with narcolepsy shows signs of eating disorders like bulimia or anorexia. Binge eating is common. People with narcolepsy also tend to be unhappy with their bodies and want to be thinner. This can affect your mental health.5

Can my narcolepsy treatment cause weight gain?

A common narcolepsy drug is Xyrem. Xyrem is made of sodium oxybate (SXB) which raises lipolysis. Because of this, people on SXB usually lose weight. A 2013 study showed people using SXB for 3 months lost an average of 11 pounds.3

Exercise is a powerful treatment

Living with a chronic disease is tough. Weight gain along with a chronic disease can impact your mental and physical health. Making lifestyle changes may slow or stop weight gain. Eat a well-balanced diet and get plenty of exercise. Daily activity will help you burn calories and boost your mood.

If you are having constant bad thoughts about your body or notice a change in the way you eat, talk to your doctor right away.

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