Narcolepsy is chronic, which means it will be with you for a long time. Though it isn’t a progressive disease like multiple sclerosis, its symptoms can change over time. And certain things you do or don’t do could lead to more sleep attacks.
“It may worsen or improve based on a person’s sleep behavior,” says Sogol Javaheri, MD, a sleep medicine physician at Brigham and Women’s Hospital in Boston. “For example, sometimes people with narcolepsy may find that they can get by without napping during the day. That can be a big mistake, because sleep can never be replaced.”
What Causes Narcolepsy?
Experts think narcolepsy comes from an autoimmune disorder. 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 is what leads to sleep attacks.
“It tends to come on gradually,” he says. “There are often no warning signs. As the person experiences strong emotions, they start to yawn and then they start to lose tone in their muscles. Some people get weak in the knees, while others lose muscle tone in their face.”
Cataplexy may not first appear until months or even years after other narcolepsy symptoms. 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 tricks the immune system into attacking hypocretin-producing cells. “The onset of narcolepsy symptoms most commonly occur in late spring, suggesting that the disease may be triggered by winter infections,” Javaheri says.
Infections don’t seem to cause narcolepsy on their own, though. Many of the people who developed narcolepsy after they got the Pandemrix vaccine also carry a gene called GDNF-AS1. “It suggests that a combination of genetic predisposition, young age, and specific immune stimuli increase the risk of narcolepsy,” Javaheri says.
You can get tested for gene changes linked 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 controlling the normal sleep-wake cycles in narcolepsy causes the sudden attacks of sleepiness. “We don’t believe that it is related as much to environmental factors,” Awad says. But, he adds, “There are a lot of things people can do to improve the symptoms of narcolepsy.”
Avoid alcohol and caffeine, especially before bedtime. “Alcohol causes sleep fragmentation, which means that it breaks up our sleep,” Awad says. Alcohol interrupts the restorative REM sleep stage, which can leave you feeling sleepy the next day, even when you feel like you’ve had a full night’s sleep.
Alcohol also interacts with some of the medicines that treat narcolepsy. For example, taking the drug sodium oxybate (Xyrem) with alcohol can cause trouble breathing.
There’s some evidence that the nicotine in cigarettes improves narcolepsy symptoms. But given the other health problems linked to smoking, “the risks strongly outweigh the benefits,” Awad says. “There’s also the concern, 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 condition. It won’t ever completely go away, but once you get on the right treatment, “you should be able to function,” Javaheri says. “If your quality of life is significantly affected, that’s an indication to see your doctor.”
Symptoms like excessive sleepiness or trouble staying awake at school or work in someone who hasn’t been diagnosed with narcolepsy are reasons to see a doctor for an evaluation, she says. Narcolepsy symptoms can overlap with mood disorders like depression and anxiety, and with sleep disorders such as obstructive sleep apnea. As a result, it can sometimes take years to get the right diagnosis.