Self-Help Tools for Patients with Epilepsy
One of the first things I talk about when I meet with patients newly diagnosed with epilepsy, besides the importance of seizure control and taking medication, is how to take control of their own health.
I explain the concept of self-management and direct them to a variety of tools that go "beyond the pill" to help them live healthy lives and improve their quality of life.
Take Ownership of Your Care
The concept of self-management—taking control of behaviors and activities that maximize health—has been studied for decades and is increasingly considered an important method for managing chronic conditions. For people with epilepsy, it encompasses strategies such as taking medication as directed, tracking seizures, getting adequate sleep, preventing and managing seizure emergencies, and reducing stress.
These three tools can help you execute these epilepsy self-management strategies:
- Educational Programs
A variety of educational programs geared to patients with epilepsy are available and sponsored by either the Epilepsy Foundation or a consortium called the Managing Epilepsy Well (MEW) Network. Think of these programs as an opportunity to go back to school or take a class. They offer curriculum-based lectures that identify strategies to improve seizure management, teach you how to stay healthy mentally, and focus on ways to improve medication adherence. They also help you create seizure action plans and decrease emotional stress. You can choose an online or onsite course or program that best addresses your individual concerns.
- Seizure Diaries
Electronic diaries, such as the Epilepsy Foundation My Seizure Diary, Seizuretracker, and EpiDiary, are helpful for tracking seizures, recording your medication schedule, identifying triggers, and listing side effects of medication and how often you need rescue treatments. They are available on both mobile and web-based platforms, and many include reminders to take your medication, order refills, and report seizures. Traditional paper-based diaries can also be used by patients, if preferred, but may lack the more advanced features of the digital versions.
- Early Detection Devices
Epilepsy-specific wearable devices can detect large seizures such as convulsions for people who aren’t always aware of their seizures, especially if they occur at night. The devices can be used to alert family members or caregivers about an unwitnessed seizure, allowing them to provide immediate medical attention. It also ensures more accurate reporting of seizures for other members of the health care team.
Look for more information about each of these strategies in my next few The Neurologist Is In posts.
Dr. Hixson is associate professor of neurology at the University of California, San Francisco, and the San Francisco VA Medical Center, and a practicing neurologist who treats epilepsy patients.
