Seizure diaries have always been an important part of the lives of epilepsy patients.
Fortunately, with the ubiquity of smartphones and a handful of new seizure-tracking apps, handwritten diaries—and their historic unreliability and inconvenience—could become a thing of the past.
“Of course we recommend seizure diaries to all patients, but they don’t always follow through,” said M. Ayman Haykal, MD, who is an epilepsy specialist with Spectrum Health Medical Group and director of the Epilepsy Monitoring Unit at Spectrum Health. “Most patients depend on memory when it comes to reporting seizure frequency, which, as you might suspect, can be quite inaccurate.
“What if you have a seizure when you’re not at home? Then you have to remember to write it down when you get home, which doesn’t always happen,” Dr. Haykal said. “But smartphones are always in your pocket, we’re looking at them all the time, so it’s easy to do it this way.”
Three million Americans currently live with epilepsy, according to the Epilepsy Foundation. One in 26 Americans will develop epilepsy in their lifetime.
But a handful of new apps help patients track their seizures—and the circumstances surrounding those episodes—wherever they go.
Dr. Haykal has recommended My Seizure Diary to patients, an app designed by the Epilepsy Therapy Project and available in the iPhone app store and at www.epilepsy.com. Using My Seizure Diary, patients can track seizures and the events surrounding them. The app also tracks medicines and dosages, provides reminders to take medicine, and allows users to fill in more details about their day, which could help with treatment and prevention.
Dr. Haykal has also recommended a similar app called Seizure Log from www.seizuretracker.com. The Young Epilepsy app and the Epilepsy Tool Kit, an app from the Epilepsy Society, are similar tools that also offer the ability to videotape seizures, which can provide doctors valuable information about the length and severity of an episode.
The apps help doctors know whether a medicine is working, and also help them select future treatment.
“If the patient has one mild seizure, that’s different that having one every week,” he said. “A lot of times, patients can’t recall details in clinic. You know, ‘I know I’m still having them, but I’m not sure how many,’ and then they take a guess.
“Some patients have mild symptoms, mild confusion. …Others have loss of consciousness and jerking movements. Knowing how a patient is responding to treatment and what type of seizure they’re having is very helpful for the physician and determining how to treat them.”
The new diaries—like well-kept handwritten diaries—also might help doctors determine triggers.
“Patients might notice that seizures increase with certain stressful hours, for instance, or long work hours or stressful situations, or alcohol,” Dr. Haykal said. “Once you know these things, you can possibly avoid them in the future.”
Even more advanced technology and apps have begun sprouting up. EpiWatch, a new app from researchers at Johns Hopkins University, will be the first to take advantage of the Apple Watch’s sensors for a medical study.
Patients who sign up and download the app—and wear an Apple Watch—can allow it to measure their limb movement, blood flow and heart rate immediately before and during a seizure, and then send that data to researchers. The app also measures recovery and responsiveness through voluntary memory tests and simple questions. This information will help researchers develop better apps and eventually notify—in real-time—loved ones and doctors when patients are having episodes.
Dr. Haykal said all seizure specialists need to be more aware of apps and the burgeoning technology surrounding epilepsy.
“With smartphones being in everybody’s pocket nowadays, we should be encouraging patients to use such apps,” he said. “They’re so easy to use and tremendously helpful to doctors and patients. … We should all be recommending them.”