Does Narcolepsy Go Away? Consider Long-Term Prognosis and Treatments

Medications May Help to Relieve Sleepiness and Cataplexy Symptoms

Narcolepsy may never go away, but medications may help to relieve excessive sleepiness and episodes of cataplexy
Narcolepsy may never go away, but medications may help to relieve excessive sleepiness and episodes of cataplexy. Ghislain & Marie David de Lossy/Getty Images

Narcolepsy can be a difficult condition to live with, with debilitating excessive daytime sleepiness and sudden weakness called cataplexy, so it is natural to wonder about the long-term prognosis. Though we are gradually gaining a better understanding of the disorder and ways to treat it, the question remains: Does narcolepsy ever go away? Learn about the present theory of why narcolepsy occurs and whether the underlying cause can be reversed.

What Causes Narcolepsy to Occur?

Narcolepsy is believed to be due to an autoimmune process. The immune system is responsible for fighting off infections, but sometimes this powerful arsenal is turned against the body itself. When this occurs, specific syndromes may result, including hepatitis, rheumatoid arthritis, and even narcolepsy. There is growing evidence that an infection may trigger the body to react against the body in some individuals who are susceptible due to a genetic predisposition.

In narcolepsy, the body’s immune system begins to target and destroy a small population of neurons within the hypothalamus of the brain. These neurons, or nerve cells, contain a neurotransmitter called hypocretin or orexin. As the disease evolves, the entire collection of 60,000 to 70,000 nerve cells in the hypothalamus are permanently destroyed. As a result, the level of hypocretin detected in the cerebrospinal fluid (CSF) that bathes the brain drops to zero.

This can be measured via a lumbar puncture. When patients have cataplexy, a type of weakness triggered by emotion, the hypocretin levels are usually zero and this characterizes type 1 narcolepsy.

This destructive autoimmune process may be provoked after infection, typically a cold or flu. More recently, an increased risk of narcolepsy was found following vaccination with Pandemrix, a monovalent 2009 H1N1 influenza vaccine that was specifically produced for pandemic 2009 H1N1 influenza and used in several European countries during the H1N1 influenza pandemic in 2009 - 2010.

It has not been used since in Europe, and has never been used in the U.S. at any time. It is believed that an exposure in certain susceptible individuals may lead to this destruction, and ultimately to narcolepsy.

Does Narcolepsy Ever Go Away?

Unfortunately, the destruction of these brain cells is typically complete and the resulting deficit is permanent. The damage that is done cannot presently be reversed. Therefore, narcolepsy is a chronic condition that requires persistent treatment.

There are multiple treatments that may be effective in treating the symptoms associated with narcolepsy. These may include stimulant medications such as Provigil or Nuvigil as well as medications that prevent cataplexy such as Xyrem. If you suffer from narcolepsy, it is important to speak with a sleep specialist who can tailor the treatment to your specific needs. Though disability often persists, some people are able to make adjustments with the use of medications to preserve many daily functions.

Hope remains in the years to come.

New therapeutics may be able to prevent, slow, or reverse the destruction of these hypocretin-containing cells in susceptible individuals. Regeneration of this population of brain cells with stem cell transplants may also eventually be possible. Though these interventions are still distant on the horizon, there remains the possibility that one day narcolepsy may ultimately go away in those who are afflicted with it.


CDC statement on narcolepsy following Pandemrix influenza vaccination in Europe.

Kryger, MH et al. "Principles and Practice of Sleep Medicine." Elsevier, 5th edition. 2011.

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