Resources for living your best life with epilepsy

National Association of Epilepsy Centers

Not all epilepsy care is created equal. The National Association of Epilepsy Centers (NAEC) is a non-profit association that develops standards of high-quality epilepsy care and accredits hospitals based on the level of services offered to patients with epilepsy. It accredits hospitals based on the range and quality of services available to patients with epilepsy. Level 1 epilepsy centers are where epilepsy care is provided by primary care providers or through the emergency department. Level 2 epilepsy centers are where epilepsy care is provided by general neurologists without specialty training in the management of epilepsy. Level 3 and 4 epilepsy centers are where epilepsy care is provided by neurologists with specialty training in epilepsy and where a range of multi-disciplinary services are offered to people with epilepsy. The two primary differences between level 3 and 4 centers are the volume (how many patients with epilepsy are cared for over the course of a year) as well as the diversity of services offered to patients with epilepsy. The NAEC recommends seeking care at a Level 3 or Level 4 epilepsy center if seizures persist after one year under the care of a general neurologist. Use the NAEC’s Find an Epilepsy Center Tool here.

HOBSCOTCH (memory training tool designed for people with epilepsy)

HOBSCOTCH is a behavioral program designed to address the memory and attention problems that frequently occur in people living with epilepsy. The program consists of eight sessions delivered by a certified HOBSCOTCH Memory Coach. The sessions occur weekly and last 45-60 minutes. The first and last sessions are conducted either in-person or virtually via video chat while the middle six sessions are held via a telephone call. Get more information or register for HOBSCOTCH here.

Mental health resources for people with epilepsy

Mood disorders including depression and anxiety are very common in people with epilepsy. This doesn’t mean that people with epilepsy are depressed or anxious because they have epilepsy but rather that the brain changes we see epilepsy are similar to the brain changes we see in depression and anxiety even without epilepsy. This means that there is something biologically similar between depression and anxiety and epilepsy that we don’t fully understand. Addressing these mood disorders can not only help people living with epilepsy feel better on a daily basis but also improve seizure control (very interesting but not at all understood!).

Project UPLIFT is a home-based mental health program designed for people with epilepsy to help them maximize their wellbeing through mindfulness and cognitive-behavioral skills. The program is administered in a small group setting over the phone led by a certified facilitator. Sessions are held weekly for an hour at a time and the program runs for eight weeks. Get more information or register for Project UPLIFT here.

It’s All Good Here is a mindfulness and meditation website designed with scientists to help you live your best life while dealing with the tough stuff life throws your way. Check out their website here to explore the wide variety of different science-backed mindfulness hacks to retrain your brain to shake off the shackles of epilepsy, conquer your emotional well-being and rewrite your epilepsy story.

Diet therapy options for epilepsy

Following a low carbohydrate (few starches, grains and sugars) diet can improve seizure control in people living with medication-resistant epilepsy. Diet therapy rarely eliminates seizures completely but can reduce the frequency of seizures. There are a variety of options available to suit different needs and lifestyles. While a healthy diet is important for all of us, with or without seizures, diet therapy for epilepsy can change the body’s metabolism to modify the energy sources used in the brain to help get better control of seizures. This should be considered as seriously as any other treatment prescribed by your doctor and individuals following a dietary routine for seizure control should be monitored regularly by a registered dietician with expertise in diet therapies for epilepsy. More information on options and resources to explore are available here.

Epilepsy Foundation, National

The Epilepsy Foundation is a national organization based in the United States working to serve the epilepsy community through resources, advocacy and research. Many of the tools mentioned here at Epilepsy Academy are offered through the Epilepsy Foundation’s Managing Epilepsy Well Network of services. Visit their website to find more information.

Epilepsy Foundation, Local Chapters

Every zip code in the United States has access to local services of the Epilepsy Foundation. Services vary between chapters but can include support groups for patients and families, respite care services for caregivers, summer camps for children with epilepsy, art therapy programs, legal assistance for epilepsy related discrimination and much more. Services are usually free or very low cost. Use the locate services tool to find your local chapter.

Information about SUDEP (sudden unexplained death in epilepsy)

SUDEP is the most tragic outcome of poorly controlled seizures. Patients and families are frequently unaware of the risks of SUDEP and doctors aren’t always comfortable discussing it despite recommendations that they do. Please visit the Danny Did Foundation and Partners Against Mortality in Epilepsy (PAME) for more information, resources and tools for identifying risk factors.