For the 2.5 million people living with epilepsy in the United States, medications can help control their seizures — most of the time. But some suffer unpleasant side effects from the drugs. And a few remain at risk of death.
Researchers at the Johns Hopkins University hope to help those with the neurological condition by collecting information about their seizures through their watches, specifically their Apple Watches.
"Physicians often ask patients to record their seizures, but that can be hard, especially when a patient loses consciousness," said Dr. Gregory Krauss, a professor of neurology in the Johns Hopkins School of Medicine who is working on the program, named EpiWatch.
"EpiWatch collects data that help researchers better understand epilepsy, while helping patients keep a more complete history of their seizures," he said.
Epileptic seizures, caused by uncontrolled abnormal electrical activity in the brain, vary in their type and severity and affect a person's independence and quality of life to varying degrees.
The EpiWatch app uses the watch's built-in sensors that detect movement, orientation and heart rate.
The Hopkins researchers used Apple's free, open-source software ResearchKit to develop the app, tweaking the tools it offers to measure a patient's seizures.
When a user anticipates a seizure — many experience an "aura," a change in vision or smell before the event — they can start the app.
Over 10 minutes — before, during and after a seizure, which normally last no more than five minutes — the app records a person's movements and heart rate, which usually jumps. During the seizure, it prompts the user to play a memory game to test their responsiveness and see when the seizure ends. Once it's over, it asks questions about the kind of seizure, possible triggers and if medications had been taken.
The data could not only help doctors adjust an individual's treatment to make it more effective and less burdensome, but could also help researchers better understand the disease so they can counter sudden unexpected death, a danger some face from seizures.
Over the next year or so, Krauss hopes to refine the app so it runs continuously in the background and detects signs that indicate when its wearer is about to have a seizure. It also might be able to generate an alert for family, caregivers or emergency personnel when a seizure begins. Such a high-functioning app could allow children with epilepsy to play away from their parents or enable adults to live independently.
Apple says that the ResearchKit software could be used for other purposes, such as tracking potentially cancerous moles, screening for autism, directing asthma sufferers away from pollution and detecting symptoms of Parkinson's disease. Other uses include monitoring breast cancer, heart disease and diabetes.
Krauss has about 140 people signed up anonymously to use the epilepsy app, which is available free in the Apple App Store, and hopes to get several hundred more. He also hopes to secure grant funding for participants who can't afford the Apple Watch, which can cost hundreds of dollars.
In the past, seizure detectors have been unreliable, but some doctors said they are hopeful about EpiWatch's potential. One of them is Dr. P. Jay Foreman, director of the Epilepsy Center at Sinai Hospital.
Another more immediate gain from the watch is the log kept of seizure activity, side effects and medication adherence, said Foreman, who is not involved in the study.
About 50 percent to 70 percent of people with epilepsy can control their seizures with a single medication, but finding the best drug and dose that doesn't produce disabling side effects can be tricky, Foreman said. About 10 percent need more than one medication and about 20 percent aren't helped by drugs.
Sorting through the treatment options can be tougher when people forget to tell doctors about side effects or when they skip medications.
"Some tell you with a high degree of reliability about their seizures, and some don't," Foreman said. "I would be able to see that someone had three seizures last month and didn't take medications those days."
Foreman said that information could help him adjust medications. And the watch itself could remind patients to take their medications — especially younger patients, a group that's particularly prone to forget to take them.
Remembering to take medications twice daily was an problem for Petagaye Riley, a 33-year-old Bowie mother who was diagnosed with epilepsy about 11 years ago and recently signed up for the study using EpiWatch on her cellphone. She's since bought an Apple Watch.
Her major seizures have been controlled with medication, but she still has mini-seizures. She's already begun relying on the reminders to take her drugs, which she hopes will help her control the disease — and give her greater freedom to drive, cook and even shower without another adult in the house.
Riley also said that, thanks to the detectors in the watch, she has learned more about her seizures, including that she no longer shakes but stares unmoving during an episode. Eventually, she hopes to identify triggers for her seizures.
"I'm a mother of a 5-year-old, and my medications are the last thing on my list," she said. "Just last night I forgot and my watch reminded me. I've only been using it for a short time and it's already helped me. I'm going to keep using it as long as it's helping me or somebody."