Connect with others who understand.

sign up log in
Resources
About MyNarcolepsyTeam

Connect with others who understand.

sign up log in
Resources
About MyNarcolepsyTeam

Narcolepsy and Hypothalamic Tumors

Posted on June 16, 2021
Medically reviewed by
Allen J. Blaivas, D.O.
Article written by
Brooke Dulka, Ph.D.

Narcolepsy is a rare neurological sleep disorder. In addition to type 1 and type 2 narcolepsy, there’s a type called secondary narcolepsy — or symptomatic narcolepsy. Secondary narcolepsy is caused by injury to the brain, including a hypothalamic tumor.

What Is Secondary Narcolepsy?

Whereas type 1 and type 2 narcolepsy are idiopathic (of unknown origin), secondary narcolepsy is not. The condition is caused by injuries to the brain region that helps control sleep, called the hypothalamus. Some of these injuries include:

  • Stroke
  • Head trauma
  • Brain tumors
  • Inflammatory diseases (such as encephalomyelitis)
  • Inherited disorders (such as Prader-Willi syndrome and Niemann-Pick disease)
  • Multiple sclerosis

The symptoms of secondary narcolepsy are very similar to those of type 1 and type 2 narcolepsy, including cataplexy (sudden muscle weakness) and excessive daytime sleepiness. The biggest difference is, people with secondary narcolepsy tend to sleep for at least 10 hours a day, whereas people with type 1 or type 2 narcolepsy tend to sleep the same amount as those without narcolepsy (approximately 8 hours).

What Are Hypothalamic Tumors?

Hypothalamic tumors are brain tumors that occur in a specific area of the brain known as the hypothalamus. The hypothalamus is a small region near the base of the brain, positioned above the pituitary gland and brain stem. It is largely responsible for the production of hormones within the brain and body. Tumors in or near the hypothalamus can be disruptive.

Like most tumors, the causes of hypothalamic tumors are largely unknown. The hypothalamus can be a site of many types of tumors, including gliomas — a tumor that results from abnormal growth of a type of brain cell known as a glia. But why cells such as glia begin to grow abnormally is not well understood. In one study, researchers found that most cases of hypothalamic tumor-related secondary narcolepsy were associated with tumors called craniopharyngioma (38 percent), adenoma (24 percent), and glioma (14 percent). Some of these tumors are benign (noncancerous). Others are not. Often, it is hard to tell the difference between benign and malignant (cancerous) tumors, even using a microscope. Benign or malignant, these tumors can still cause secondary narcolepsy to occur.

How Do Hypothalamic Tumors Cause Narcolepsy?

Researchers have discovered that dysfunction in the hypocretin (orexin) system is associated with type 1 and type 2 narcolepsy. This has led to new insights into the processes underlying secondary narcolepsy, particularly secondary narcolepsy caused by hypothalamic tumors.

It is believed that tumors in the region of the hypothalamus cause secondary narcolepsy by affecting hypocretin-1 (orexin-A) production, as hypocretin is produced in the hypothalamus. Hypocretins, especially hypocretin-1, play an important role in the regulation of sleep, likely due to the role that hypocretin-1 plays as an “on-off” switch between states of sleep and wakefulness. Levels of this brain hormone in the cerebrospinal fluid (CSF) are often low in individuals with type 1 and type 2 narcolepsy. Importantly, one study found that most cases of secondary narcolepsy (including those caused by tumors) were also associated with lower hypocretin-1 in the CSF.

Symptoms of hypothalamic tumor-associated secondary narcolepsy that are likely a result of hypocretin-1 deficiency include:

  • Excessive daytime sleepiness
  • Dysregulated sleep cycles
  • Irregular REM sleep patterns
  • Sleep paralysis (the inability to move either while falling asleep or while waking)

Diagnosis and Treatment of Symptomatic Narcolepsy

A diagnosis of secondary or symptomatic narcolepsy from a hypothalamic region tumor will likely require an MRI examination. An MRI scan can show tumors in the hypothalamus.

Treating narcolepsy-linked tumors can be difficult, but not impossible. A biopsy may be performed to determine if surgery is an option. The use of stimulants may also help address symptoms. Both surgery and stimulants appear to increase hypocretin activity.

Building a Community

MyNarcolepsyTeam is the social network for people with narcolepsy and their loved ones. On MyNarcolepsyTeam, more than 6,000 members come together to ask questions, give advice, and share their stories with others who understand life with narcolepsy.

Are you living with narcolepsy? Share your experience in the comments below, or start a conversation by posting on MyNarcolepsyTeam.

All updates must be accompanied by text or a picture.
Allen J. Blaivas, D.O. is certified by the American Board of Internal Medicine in Critical Care Medicine, Pulmonary Disease, and Sleep Medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Brooke Dulka, Ph.D. is a freelance science writer and editor. She received her doctoral training in biological psychology at the University of Tennessee. Learn more about her here.

Related articles

Narcolepsy is a rare sleep disorder thought to be caused by a combination of influences,...

Can Strep Throat Trigger the Development of Narcolepsy?

Narcolepsy is a rare sleep disorder thought to be caused by a combination of influences,...
Narcolepsy, a type of sleep disorder, occurs in about 1 in 2,000 people in the United States....

How Can Tumors and Brain Injuries Cause Narcolepsy?

Narcolepsy, a type of sleep disorder, occurs in about 1 in 2,000 people in the United States....
Narcolepsy causes excessive daytime sleepiness, sleep paralysis, and, in some cases, cataplexy (a...

Pathophysiology of Narcolepsy

Narcolepsy causes excessive daytime sleepiness, sleep paralysis, and, in some cases, cataplexy (a...
Narcolepsy is a chronic sleep disorder that is characterized by symptoms such as excessive...

New Study Sheds Light on Autoimmune Nature of Narcolepsy

Narcolepsy is a chronic sleep disorder that is characterized by symptoms such as excessive...
Narcolepsy is a sleep disorder that affects roughly one in every 2,000 people. The most common...

Hypocretin in Narcolepsy and How It Affects Sleep

Narcolepsy is a sleep disorder that affects roughly one in every 2,000 people. The most common...
Recent studies suggest a possible link between narcolepsy and autoimmune disease. Although the...

Is Narcolepsy an Autoimmune Disease?

Recent studies suggest a possible link between narcolepsy and autoimmune disease. Although the...

Recent articles

Narcolepsy is a rare sleep disorder that can cause excessive daytime sleepiness, sudden loss of...

Is Narcolepsy Linked to Vitamin Deficiency?

Narcolepsy is a rare sleep disorder that can cause excessive daytime sleepiness, sudden loss of...
The Centers for Disease Control and Prevention (CDC) approved a second COVID-19 booster shot of...

What People With Narcolepsy Should Know About Getting a Second COVID-19 Booster Shot

The Centers for Disease Control and Prevention (CDC) approved a second COVID-19 booster shot of...
Apart from experiencing the major symptoms of narcolepsy — excessive daytime sleepiness,...

Feelings of Detachment: Dissociative Symptoms in Narcolepsy

Apart from experiencing the major symptoms of narcolepsy — excessive daytime sleepiness,...
Narcolepsy is rare, affecting fewer than 1 in every 100,000 children. Childhood narcolepsy is a...

How To Identify and Manage Narcolepsy Symptoms in Children

Narcolepsy is rare, affecting fewer than 1 in every 100,000 children. Childhood narcolepsy is a...
Narcolepsy affects about 1 in 2,000 people in the United States. The condition causes symptoms...

Hypothyroidism and Narcolepsy: Is There a Connection?

Narcolepsy affects about 1 in 2,000 people in the United States. The condition causes symptoms...
People with narcolepsy of any type experience eating disorders at a higher rate than the general...

What You May Not Know About Eating Disorders and Narcolepsy

People with narcolepsy of any type experience eating disorders at a higher rate than the general...
MyNarcolepsyTeam My narcolepsy Team

Thank you for subscribing!

Become a member to get even more:

sign up for free

close