Living With Narcolepsy and Cataplexy

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  • People with narcolepsy experience extreme sleepiness and, often, related conditions such as cataplexy, the sudden loss of voluntary muscle control that’s frequently brought on by strong emotions
  • Narcolepsy involves the loss of hypocretin-producing neurons, which are involved in helping people to stay awake
  • It’s thought narcolepsy may have an autoimmune component, with a key exposure — to a flu virus, streptococcus (strep) bacteria or vaccination — acting as the tipping point that triggers the autoimmune reaction that destroys the hypocretin neurons
  • Lifestyle strategies, including napping, exercise, support groups and following a ketogenic diet, may help make narcolepsy and cataplexy symptoms more manageable

By Dr. Mercola

It’s estimated that up to 200,000 Americans have narcolepsy, a disorder that involves the loss of hypocretin-producing neurons.1 Hypocretin, also known as orexin, is a neuropeptide hormone involved in helping people stay awake; without it, people with narcolepsy experience extreme sleepiness and, often, related conditions such as cataplexy, the sudden loss of voluntary muscle control that’s frequently brought on by strong emotions.

Ironically, while those with narcolepsy may nod off without a moment’s notice, they often have difficulty sleeping at night, experiencing fragmented sleep and insomnia. At nighttime, most people progress through five stages of sleep, culminating in rapid eye movement (REM) sleep, which is when most dreaming occurs. But a person with narcolepsy may experience REM sleep at the beginning of the sleep cycle, just minutes after falling asleep.2

REM sleep can even occur during the day, which is especially problematic because your muscles typically stay limp during REM sleep. Vivid dreams, sleep apnea, sleep paralysis (inability to move before falling asleep or after waking) or movements during dreaming are par for the course with narcolepsy, as is a persistent feeling of daytime sleepiness, regardless of how many hours of sleep occurred the night before.

Many people think of narcolepsy as a disorder that causes people to fall asleep at odd times — and it is — but it’s more than that. Even when a person isn’t in the midst of a sleep attack, so to speak, they may still feel debilitating symptoms that make day-to-day life difficult. As reported by Prevention, 28-year-old narcolepsy sufferer Ashley Starr explained that living with narcolepsy is “an ongoing struggle:”

“I found out that narcoleptics don't cycle through all the normal phases of sleep. Instead, I was going straight into and out of REM, the phase in which dreams happen. I was sleeping, but not getting quality rest. Try to imagine how you'd feel if you stayed up 72 hours straight. That's how I feel all the time.”3

The Two Types of Narcolepsy

Narcolepsy is broken down into two primary types, according to the National Institute of Neurological Disorders and Stroke (NINDS):4

  • Type 1 narcolepsy (which was previously known as narcolepsy with cataplexy) involves a person having low levels of hypocretin or experiencing cataplexy and excessive daytime sleepiness.
  • Type 2 narcolepsy (previously known as narcolepsy without cataplexy) experience excessive daytime sleepiness but typically do not have cataplexy. Their symptoms tend to be less severe and their brain levels of hypocretin are normal.

There’s also “secondary narcolepsy,” which occurs as a result of injury to the brain’s hypothalamus, which is involved in regulating sleep. In addition to excessive daytime sleepiness, people with secondary narcolepsy may sleep for more than 10 hours a night. In the case of type 1 and type 2 narcolepsy, the underlying causes are not completely known, however it’s thought that up to 10 percent of type 1 cases may have a hereditary link, occurring in family clusters, NINDS notes.

Evidence Increasingly Suggests Narcolepsy Is an Autoimmune Disorder

Narcolepsy is typically described as a neurological disorder, but increasingly it seems an autoimmune component exists as well. “Both genetic and epidemiological evidence point toward an autoimmune mechanism in the destruction of orexin/hypocretin neurons,” researchers wrote in Current Opinion in Pulmonary Medicine, noting that, “Importantly, the highest environmental risk is seen with influenza-A infection and immunization [vaccination].”5

Many aren’t aware that the swine flu (H1N1) vaccine (Pandemrix) was causally linked to an increased risk of narcolepsy among children and adolescents, with about 1,000 people who received the swine flu shot developing the neurological disorder.6

Narcolepsy, particularly type 1, is also strongly associated with a gene by the name of human leucocyte antigen (HLA) DQB1*0602, which is involved in helping the immune system determine what’s dangerous and what’s not.7,8 Researchers further noted in the journal CNS Drugs that, in the case of type 1 narcolepsy:9

“[I]ndirect evidence strongly supports an autoimmune origin. The association with immune-related genetic factors, in particular the strongest association ever reported in a disease with an allele of a human leukocyte antigen (HLA) gene, and with environmental factors (i.e., the H1N1 influenza infection and vaccination during the pandemic in 2009) are in favor of such a hypothesis.”

It’s an interesting point that, while narcolepsy symptoms can begin at any age, typical onset occurs between ages 10 and 30,10 with some people not realizing they’re narcoleptic until they’re in their teens or 20s.

In people with the aforementioned HLA gene, a key exposure — to a flu virus, streptococcus (strep) bacteria or vaccination — may be the tipping point that triggers the autoimmune reaction that destroys the orexin/hypocretin neurons. Writing for Mosaic Science, Henry Nicholls explained that his narcolepsy symptoms didn’t begin until after he turned 21.

“While other infections during my childhood, hormonal fluctuations and emotional stress may also have played a part, it was in late 1993 that I probably encountered a key pathogen … that took me to an autoimmune tipping point and resulted in the rapid dismantling of my orexin system. In short, most cases of narcolepsy are probably the result of an unfortunate combination of events that create the perfect immunological storm.”11

Drug Treatments for Narcolepsy May Be Difficult to Live With

Researchers have toyed with the idea of treating narcolepsy by replacing hypocretin/orexin neurons, or using immune-based therapies, given when symptoms first occur, to try to slow down or stop the autoimmune reaction.12 For now, however, conventional treatment involves drugs that attempt to help people manage symptoms, which must be taken for life and can have debilitating symptoms of their own.

The first-line treatment is typically Modafinil, a central nervous system stimulant used to combat daytime sleepiness, although methylphenidate (brand names Ritalin, Concerta, Medikinet and Equasym) is also sometimes prescribed.

In the latter case, irritability, heart rhythm problems and disruptions to nighttime sleep can occur, and, as noted by NINDS, “the potential for abuse is high with any amphetamine.”13 Antidepressants are another drug class sometimes given to people with cataplexy, an off-label usage that a study published in the Cochrane Database of Systematic Reviews said has “scarce” evidence of effectiveness:

“There was no good quality evidence that antidepressants are effective for narcolepsy or improve quality of life. Despite the clinical consensus recommending antidepressants for cataplexy there is scarce evidence that antidepressants have a positive effect on this symptom.”14

Sodium oxybate (also known as gamma hydroxybutyrate or GHB), a powerful sedative, is also prescribed to treat cataplexy and excessive daytime sleepiness. It must be taken twice a night (once before bedtime and again three or four hours later), but can cause numerous side effects, such as headaches, nausea, dizziness, confusion and depression.

It may also lead to the patient becoming comatose and suffering seizures when taken with alcohol or other sedating medications.15 The drug may also be habit-forming and may lead to life-threatening breathing problems and changes in mood or behavior.16

Managing Narcolepsy and Cataplexy Naturally

In some cases, lifestyle interventions can help to manage the symptoms of narcolepsy and cataplexy, making the disorders easier to live with. Among them:

Avoid caffeine and nicotine. While some patients ingest stimulants to deal with constant drowsiness, others shun the use of caffeine and nicotine because stimulants can interfere with the natural sleep cycle and aggravate disturbed nighttime sleep.

Schedule naps. Experts suggest that taking scheduled naps throughout the day can prevent you from accidentally dozing off at random times.

Get exposure to natural light. Exposure to natural light triggers the brain to produce both serotonin and norepinephrine, which promotes wakefulness and alertness. Sunlight or lamps that mimic natural light also regulate the circadian rhythm.17

Exercise. Exercising not only promotes a healthier lifestyle, but can also help your body reduce and combat drowsiness. Regular exercise can improve sleep quality as well. Research even shows that, among people with narcolepsy, the better your cardiovascular fitness, the lower your degree of sleepiness and frequency of cataplexy episodes.18

Avoid medications that cause drowsiness. There are numerous medications in the pharmaceutical world that list drowsiness as a side effect, including antihistamines, painkillers and anti-anxiety medicines. If you're affected by narcolepsy, you should avoid using these medications to prevent aggravating its symptoms.

Avoid large meals before bedtime, as eating heavy meals before bed may make it harder to sleep.19

Maintain a regular sleep/wake cycle, including going to bed and waking at the same time each day.20

Try to relax before bed, such as by taking a warm bath or shower, and make sure your bedroom is conducive to sleep.

Join a support group. “Support groups can be extremely beneficial for people with narcolepsy who want to develop better coping strategies or feel socially isolated due to embarrassment about their symptoms,” NINDS notes. “Support groups also provide individuals with a network of social contacts who can offer practical help and emotional support.”21

Additional Natural Remedies, Including Ketogenic Diet, for Narcolepsy and Cataplexy

With conditions as complex as narcolepsy and cataplexy, it’s strongly recommended that you seek out an expert in this area who can guide you on the most effective natural and lifestyle-based interventions. However, additional remedies that may help to manage symptoms include:

  • Gotu kola. This herb reduces fatigue, anxiety and depression. It has been used to strengthen the blood vessels, improve the flow of blood and nutrients into the brain and assist in normalizing your sleeping patterns. Gotu kola is available as an herb extract, supplement and tea.22
  • Ginkgo biloba. It enhances blood circulation to the brain and provides protection from neurodegenerative damage through its antioxidant properties. Ginkgo biloba is available as extracts, tablets or tea. However, bear in mind that the excessive intake of ginkgo biloba can cause headaches, stomach upset or constipation.23
  • St. John's wort. The consumption of the St. John's wort herb helps in lessening anxiety and promoting alertness. It's commonly used in extract form, but it can also be taken as tea. The recommended dosage is 300 milligrams, taken three times per day. It should be noted that people have varying tolerance for herbs like this, so it's best that you consult a physician or a health expert for the correct dosage for your condition.
  • 5-HTP. 5-HTP, which your body produces from the amino acid tryptophan, works in your brain and central nervous system by promoting the production of the neurotransmitter serotonin, and thereby may help boost mood and enhance sleep. Research suggests 5-HTP may decrease daytime sleep while increasing the duration of nighttime sleep in people with narcolepsy and cataplexy.24

Finally, as with most chronic conditions, a plan that addresses your body holistically will often yield the best results, and this includes your diet. Toward that end, research suggests a ketogenic diet, focusing on minimal net carbohydrates, moderate amounts of high-quality protein and high amounts of healthy fats, may also be beneficial for improving daytime sleepiness in narcolepsy patients.25 Anecdotal reports also suggest that many people with narcolepsy find relief from making the switch to a ketogenic diet.26

In addition, more than half of narcolepsy patients who took part in a survey said they managed their symptoms exclusively using nondrug, behavioral strategies such as cognitive behavioral therapy, mindfulness or yoga, and support groups,27 so if one strategy doesn’t work for you, keep trying, as the right solution may still be out there.

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