Narcolepsy disrupts nighttime sleep and causes drowsiness, and sometimes muscle weakness, during the day. With an illness that can interfere with your life in so many ways, you’ll want to do everything you can to avoid whatever is triggering your symptoms.
Narcolepsy is chronic, which means that it will stay with you for a long time. Although it is not a progressive disease like multiple sclerosis, its symptoms can change over time. And some things you do or don’t do could lead to more sleep attacks.
“It can get worse or better depending on a person’s sleeping behavior,” says Sogol Javaheri, MD, a doctor of sleep medicine at Brigham and Women’s Hospital in Boston. “For example, people with narcolepsy may sometimes find that they can get by without taking a nap during the day. This can be a big mistake because sleep can never be replaced.”
What are the causes of narcolepsy?
Experts believe that narcolepsy stems from an autoimmune disease. Most people with narcolepsy have very low levels of hypocretin, a chemical in the brain that helps you stay awake. A problem with the immune system causes it to attack the cells that produce hypocretin. The absence of this chemical is what leads to sleep attacks.
A drop in hypocretin is part of narcolepsy with cataplexy, where strong emotions, including laughter or surprise, trigger a sudden loss of muscle tone. In the movies, characters with cataplexy suddenly go limp, fall and hit the ground. In reality, the symptom is usually not that dramatic, says Michael Awad, MD, chief of the sleep surgery division at Northwestern Medicine in Chicago and chief medical officer at PEAK Sleep.
“It tends to come gradually,” he says. “Often there are no warning signs. As the person experiences strong emotions, they start to yawn, then they start to lose muscle tone. Some people weaken in the knees, while others lose facial muscle tone. “
Cataplexy may not appear for months or even years after other symptoms of narcolepsy. A low dose antidepressant can help with this symptom.
Is a virus to blame?
One theory about the origins of narcolepsy is that a virus or other infection causes the immune system to attack hypocretin-producing cells. “The onset of symptoms of narcolepsy most often occurs in late spring, which suggests that the disease may be triggered by winter infections,” Javaheri explains.
About two-thirds of people diagnosed with narcolepsy test positive for antibodies against strep, the bacteria that causes strep throat. Cases of narcolepsy increased after the 2009-2010 H1N1 influenza virus pandemic in China. And in several European countries, many children who have received the Pandemrix vaccine, which protects against the H1N1 virus, have been diagnosed with narcolepsy.
However, infections do not appear to cause narcolepsy on their own. Many people who have developed narcolepsy after receiving the Pandemrix vaccine also carry a gene called GDNF-AS1. “This suggests that a combination of genetic predisposition, young age and specific immune stimuli increases the risk of narcolepsy,” explains Javaheri.
You can get tested for genetic changes related to narcolepsy. But unless you have a family history of the condition, it may not be worth it, she adds.
Avoiding sleep attack triggers
A problem with controlling the normal sleep-wake cycles in narcolepsy causes sudden attacks of drowsiness. “We don’t think it’s related to environmental factors as much,” Awad said. But, he adds, “there is a lot that people can do to improve the symptoms of narcolepsy.”
One is to stick to a regular sleep schedule. Go to bed at the same time every night and wake up at the same time every morning. Try to get 7-8 hours of sleep per night. Make up for the sleep you miss during the day with naps. “Scheduling naps is really essential,” says Javaheri. “Try to schedule daytime naps before hitting the wall or feeling really drowsy.”
Avoid alcohol and caffeine, especially before bed. “Alcohol causes sleep fragmentation, which means it disrupts our sleep,” Awad explains. Alcohol interrupts the stage of restful REM sleep, which can make you drowsy the next day, even when you feel like you’ve had a full night’s sleep.
Alcohol also interacts with some of the drugs that treat narcolepsy. For example, taking sodium oxybate (Xyrem) with alcohol can cause breathing difficulties.
There is some evidence that the nicotine in cigarettes improves the symptoms of narcolepsy. But given the other health problems associated with smoking, “the risks far outweigh the benefits,” Awad says. “There is also the worry, especially when people smoke in the afternoon or evening, if they have a sleep attack, it could lead to burns or fires.”
When to see your doctor
Narcolepsy is a chronic disease. It will never go away completely, but once you’ve received the right treatment, “you should be able to function,” Javaheri says. “If your quality of life is significantly affected, this is an indication to see your doctor.”
Symptoms like excessive sleepiness or difficulty staying awake at school or work in someone who has not been diagnosed with narcolepsy are reasons to see a doctor for an evaluation, she says. Symptoms of narcolepsy may overlap with mood disorders like depression and anxiety, and with sleep disorders like obstructive sleep apnea. As a result, it can sometimes take years to get the correct diagnosis.
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