By Douglas Heck, PhD Licensed Psychologist, and Tess Sierzant, MS, RN, ACNS-BC, CNRN
Seeking and maintaining effective epilepsy care is a different experience for everyone. For some, it’s a very straightforward process of working with a physician and staying on medication that brings about good seizure control. For others, it’s a very long and at times frustrating process, one that involves several providers, multiple medication trials, managing side effects, discussion of additional treatment options, and addressing the multiple psychosocial difficulties that often occur in epilepsy. To help improve your care, it’s important to expand epilepsy care beyond medication and medical treatment. For people with epilepsy (PWE) well as their family members, it’s important to work with one’s medical team on how to maintain good mental health, reduce social isolation, develop important relationships, and improve quality of life while at the same time maximizing one’s seizure control.
Mental health is a very, very, important part of epilepsy care. This applies to PWE as well as family members. Epilepsy doesn’t just happen to the person who has the seizures. Maintaining good mental health should be a goal in all epilepsy care. Depression is especially prevalent in people with epilepsy, occurring perhaps as often as 1 in 5 in their lifetime1. Common symptoms of depression include sadness, irritability, social withdrawal, apathy, inactivity, pessimism, loss of hope, and sometimes suicidal ideation. In children depression tends to cause behavioral changes, loss of interest in friends, poor school performance, and variable sleep/eating patterns. Anxiety in PWE is also common and is associated with fear, avoidance, lack of confidence, and poor sleep. PWE often need to try different medications and treatment interventions. During this process, they sometimes can develop cognitive difficulties including memory and learning problems. Both children and adults can become quite discouraged by this if they do not seek out some ways of changing it or compensating for it. This can lead children to not do as well in school and adults to struggle in their employment and other important life activities.
There are also a number of important social issues involved in epilepsy care. These include social isolation, unsatisfactory school performance, limited transportation options, and unemployment. Other very important social issues include financial strain, being subject to racism, one’s gender, inadequate housing, and access to healthy food, education, and social support networks2. Time may be tight during your doctors’ appointments, with the focus on your seizures and medication side effects. But it is also key for you to bring forward concerns you have regarding any of these social issues that may be causing you stress. Have your questions written down and ready. Your doctor or others on the medical team may be able to direct you to resources that can help.
Staying hopeful is important for all human beings, including PWE and their family members. Hope is something that takes a different form depending on each person and where they are in their efforts to obtain seizure control. Hope can be a force to help us stay positive, even when things around us are discouraging. After the initial diagnosis of epilepsy, which can be scary, it is important to maintain hope that one can find the right treatment and prevent any further seizures. This hope is important to hold onto because there are many different types of treatments available. For some, however, once they have pursued different treatments over time, their hope changes to better reflect the likelihood that absolute seizure control may not be obtained, but perhaps reduced seizure frequency can occur. This is called realistic hope. In spite of ongoing seizures, it is important to stay hopeful for such things as eventual improved seizure control, being able to find employment, make new friends, become happier in life, start a family, develop more independence, and improve one’s quality of life. The loss of hope often results in poorer health and depression. If this is happening for you, please reach out to your medical team, family, or trusted others. Talk about how to build your hope. J. P. from the Epilepsy Foundation of MN (EFMN) has observed that “…hope becomes more tangible when others are hopeful on your behalf.” Realistic hope is powerful, especially when you let others share their hope with you. EFMN can be a partner with you on your journey with epilepsy. The Epilepsy Foundation of Minnesota has many resources, can provide you support, and can share hope with you.
- Fiest, K.M., et al. Depression in epilepsy. Neurology. 2013 Feb 5; 80(6): 590–599.
doi: 10.1212/WNL.0b013e31827b1ae0 PMCID: PMC3589287 PMID: 23175727 - Reddy S., Siren, J. Epilepsy Essentials: Social Determinants of Health in Epilepsy. Practical
Neurology, 2022, July/August.