Narcolepsy disrupts night sleep and causes daytime sleepiness attacks and sometimes muscle weakness. If you have a condition that can affect your life in many ways, you should do everything possible to avoid anything that triggers your symptoms.
Narcolepsy is chronic, which means it will be with you for a long time. While it’s not a progressive disease like multiple sclerosis, its symptoms can change over time. And certain things you do or don’t do can lead to more sleep attacks.
“It can worsen or improve depending on a person’s sleep patterns,” says Sogol Javaheri, MD, a sleep medicine doctor at Brigham and Women’s Hospital in Boston. “For example, people with narcolepsy sometimes find that they can do without naps during the day. That can be a big mistake, because sleep can never be replaced. “
What causes narcolepsy?
Experts believe that narcolepsy results 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 lack of this chemical leads to sleep attacks.
A drop in hypocretin is part of narcolepsy with cataplexy, in which strong emotions, particularly laughter or surprise, trigger a sudden loss of muscle tone. In movies, characters with cataplexy suddenly go limp, fall over, and land. In reality, the symptom is usually not that dramatic, says Michael Awad, MD, chief of sleep surgery at Northwestern Medicine in Chicago and chief medical officer of PEAK Sleep.
“It comes more gradually,” he says. “Often there are no warning signs. When the person experiences strong emotions, they begin to yawn and then lose muscle tone. Some people get weak in their knees while others lose muscle tone in their face. “
Cataplexy may appear months or even years after other narcolepsy symptoms. A low-dose antidepressant can help with this symptom.
Is it a virus to blame?
One theory about the origins of narcolepsy is that a virus or other infection causes the immune system to attack cells that produce hypocretin. “Symptoms of narcolepsy most commonly begin to appear in late spring, suggesting that winter infections may cause the disease,” Javaheri says.
About two-thirds of people diagnosed with narcolepsy test positive for antibodies to streptococci, the bacteria that cause sore throats. Narcolepsy cases increased after the 2009-2010 H1N1 influenza virus pandemic in China. And in several European countries, many children who received the Pandemrix vaccine, which protects against the H1N1 virus, have been diagnosed with narcolepsy.
However, infection alone does not appear to cause narcolepsy. Many of the people who got narcolepsy after receiving the Pandemrix vaccination also carry a gene called GDNF-AS1. “It suggests that a combination of genetic predisposition, young age, and specific immune stimuli increases the risk of narcolepsy,” says Javaheri.
You can get tested for genetic changes associated with narcolepsy. But if you don’t have a family history, it might not be worth it, she adds.
Avoiding sleep attack triggers
One problem with controlling the normal sleep-wake cycle in narcolepsy is causing the sudden attacks of sleepiness. “We don’t think it’s environmental related that much,” says Awad. But he adds, “There are many things people can do to improve narcolepsy symptoms.”
One is to stick to a regular sleep schedule. Go to bed at the same time each evening and wake up at the same time each morning. Try to get 7 to 8 hours of sleep a night. Make up for the sleep you miss during the day with napping. “Planning naps is really important,” says Javaheri. “Try to take a nap during the day before you bump into the wall or feel really sleepy.”
Avoid alcohol and caffeine, especially before bed. “Alcohol causes sleep fragmentation, which means it disrupts our sleep,” says Awad. Alcohol interrupts restful REM sleep, which can make you feel sleepy the next day, even if you feel like you’ve slept a whole night.
Alcohol also interacts with some of the drugs that treat narcolepsy. For example, taking the drug sodium oxybate (Xyrem) with alcohol can cause breathing difficulties.
There is some evidence that the nicotine in cigarettes improves narcolepsy symptoms. But given the other health problems associated with smoking, “the risks far outweigh the benefits,” says Awad. “There is also concern, especially if people smoke in the afternoon or evening when they are having a sleep attack, it can result in burns or a fire.”
When to see your doctor
Narcolepsy is a chronic condition. It will never go away entirely, but once you get the right treatment, “you should be able to work,” says Javaheri. “If your quality of life is seriously impaired, this is an indication to see your doctor.”
Symptoms like excessive sleepiness or having trouble staying up in school or working for someone who hasn’t been diagnosed with narcolepsy are reasons to see a doctor for a checkup, she says. Narcolepsy symptoms can overlap with mood disorders such as depression and anxiety, and with sleep disorders such as obstructive sleep apnea. As a result, it can sometimes take years before the correct diagnosis is made.
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