The number of deaths linked directly and indirectly to epilepsy outpace those caused by sudden infant death syndrome (SIDS).

Yet this neurologic disease is still not as much of a public health priority as it should be, say the authors of a paper published online in the journal Neurology.

In their paper, the authors say doctors, public health officials, and government agencies should focus more on monitoring and preventing deaths caused by epilepsy, a condition of the brain that causes potentially deadly seizures.

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Epilepsy-Related Deaths Undercounted

According to the Epilepsy Foundation, 1 in 26 people will develop epilepsy at some point in their life.

The authors of the paper report that each year in the United States, more than 2,750 people die from sudden unexpected death from epilepsy. With this type of death, no other cause is found when an autopsy is done.

Compare this to the 1,575 infant deaths from SIDS each year and 2,760 deaths due to accidental exposure to fire, smoke, or flames.

Some research has also found that people with epilepsy have a 27-fold higher risk of sudden death than those without.

The authors estimate, though, that sudden unexpected death in epilepsy accounts for less than half of the deaths caused directly by seizures.

In addition, not every seizure-related death is obvious. Epilepsy can contribute to deaths due to drowning, car and bicycle accidents, and pneumonia caused by inhaling a foreign substance during a seizure.

Epilepsy may also indirectly cause deaths. People with epilepsy have a higher risk of suicide, and medications can cause chronic problems.

The varied nature of epilepsy-related deaths makes it difficult to track them accurately. Especially when epilepsy doesn’t show up on the death certificate, which is the source of many government statistics.

“When people die of a sudden unexplained death [related to epilepsy], it’s often considered to be a cardiac death. When it’s a suicide, it’s listed under suicides,” Dr. Jacqueline French, a professor of neurology at the NYU Langone Medical Center, told Healthline. “So it’s very difficult to determine what the frequency of deaths related to this condition is.”

The solution to this, of course, is better data. However, that will require more commitment from public health officials in tracking epilepsy-related deaths.

“This has to be a message to medical examiners and to other people who could help us at least assess appropriately and accurately the degree of risk that people have in different categories,” said French, who was not an author of the epilepsy paper.

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Better Education to Prevent Seizures

The authors also highlight the need for educating people with epilepsy — and their caregivers — about the seriousness of this disease.

Controlling seizures saves lives. But that requires people to take their anti-seizure medications on schedule.

People with epilepsy may be at risk of having a seizure once a week or once a month or once a year. But it’s impossible to know when a seizure will occur.

So they have to take their medication every day. French compares this to a game of Russian roulette.

“When people miss a dose of medication, most of the time there are no consequences. It’s basically like they pulled the trigger on the gun, but the chamber was empty,” said French.

Missing too many doses increases the risk of having a seizure — and dying.

“They don’t realize that one day the chamber is going to be loaded,” said French. “In the case of death [from a seizure], it’s really going to be like pulling that trigger on that gun.”

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Pill Routines Can Be Difficult

Sticking to their drug regimen may be a problem for people with epilepsy, but it’s not a unique one. Taking a pill each and every day is not a natural behavior for most people.

French says that when doctors educate patients with epilepsy about the need for taking their drugs regularly, they should avoid focusing on what’s often referred to as “noncompliance.”

“We really need to flip that conversation,” said French, and say, “’What do you need to do to be successful at taking your medication every day?’”

Not everyone with epilepsy will benefit from the current medications that are available.

However, previous research has found that there is some benefit in medications for people who don’t find a perfect drug to treat their epilepsy.

“Even if it doesn’t get rid of every single seizure, and that’s a problem for people for a number of reasons, you can still decrease their risk of death from epilepsy,” said French.

Although more work is needed in tracking epilepsy-related deaths, this issue is high on the radar of many working in the field.

“A lot of organizations — like the Epilepsy Foundation and the American Epilepsy Society — are working on this problem very intently,” said French. “It’s a problem that has definitely been focused on by epilepsy organizations.”