Managing a chronic condition like epilepsy involves more than just taking daily medication. That is an extremely important element, of course, but not the only one. A concept called self-management is also key and involves adopting behaviors and activities that maximize your health. Examples include taking medications as directed by your neurologist, tracking seizures, reporting any side effects, reducing stress, getting adequate, high-quality sleep, and proactively creating a seizure action plan.

In my own practice, I’ve seen firsthand how self-management strategies can help patients.  I’ve had several patients who never fully understood the impact of strict medication scheduling until they discovered digital tools that helped them take their medications correctly. Subsequently, they felt more in control of their health, which led to better control of their seizures

WebEase

One of the first digital programs, WebEase appeared in the 1990s. The online program offers courses on medication adherence, sleep, and stress. In a 2011 clinical trial of WebEase published in Epilepsy and Behavior, patients who completed the program reported improvements in medication adherence, self-management, and stress levels. The program is still available but has not kept pace with advances in digital technology.

Managing Epilepsy Well Network

Since the introduction of WebEase, several other programs are now available. An online hub hosted by the Managing Epilepsy Well (MEW) network provides information on six of them:

1. PEARLS and UPLIFT focus on depression, mental health, and quality of life.
2. HOBSCOTCH helps patients with epilepsy-related memory problems.
3. TIME works with patients on any mental health problems.
4. PACES is tailored for patients who have more active epilepsy that requires close monitoring.
5. SMART is designed for patients who have a history of poor health and co-occurring conditions.
   
   MEW’s variety of programs and ongoing evaluation of new and proposed programs makes it a good resource for determining the best approach for your specific concerns and needs—but the programs are available at dedicated epilepsy centers only.
   
   

Social Networks

Peer support is another valuable resource for managing your condition. For online groups, check out WebEast,  patientslikeme.com, myepilepsyteam.com, and epilepsy.com. 

A 2015 Neurology study of an online and mobile self-management program that included self-tracking tools and educational videos found that patients improved their self-management skills as well as their knowledge of technological tools.

In-Person Support

Digital and online resources are convenient and more accessible to more patients, but in-person support groups are available and valuable. Most of the MEW network programs offer in-person sessions (either individual or group) as well as one-on-one telephone peer sessions. Check with your local epilepsy center for additional resources and information.

For a general overview of other self-help tools, read Self-Help Tools for Patients with Epilepsy.

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.