Managing Your Epilepsy (Part 3): Being an Active Participant in Your Care

A doctor smiles at her patient and gestures with her hands. - Clinician's Corner

By Professional Advisory Board member Douglas G Heck PhD Licensed Psychologist

We are wonderfully complex beings, full of biological, psychological, social, and spiritual processes that interact with each other to make up who we are as people. Some of these interactions are obvious. When we are embarrassed, our body automatically causes us to feel flushed and we may have a reddened face. We know of many other more subtle interactions that occur within us that are too numerous to count. For example, people who struggle with depression are at higher risk to become physically sick from a cold or the flu, due to the effect of depression on our immune system. They also take longer to heal from injuries or surgery compared to people who are not depressed. People who chronically keep their anger inside tend to be at higher risk for heart disease. Managing our health is about more than taking medication.

Similarly, people with epilepsy and uncontrolled seizures tend to be more at risk for seizures when they are sleep deprived, physically sick, highly stressed, or after they miss doses of their medication. As Dr. Rogin emphasized in her article, medication is the very first step to obtaining better seizure control. Improving one’s management of processes within ourselves, however, can also contribute greatly to improved seizure control.

In a study that assessed self-management in people with epilepsy, Dr. Edmundo Bautista in 2017 found that people were more familiar with medication management, safety concerns, and seizure response, but less familiar with managing one’s lifestyle as part of epilepsy care. Over the years self-management programs for people with epilepsy have been studied to see if they make a difference. Programs such as MOSES (Modular Service Package Epilepsy), WebEase (Web Epilepsy Awareness, Support, and Education), and PACES (Program for Active Consumer Engagement in Self-Management) have been shown to result in improved self-care and quality of life. Therefore, learning more about self-management does make a positive difference.

Uncontrolled and unpredictable seizures can sometimes cause feelings of helplessness. It can seem that no matter what you do, seizures still occur. Over time, this can lead to sole reliance on medication to obtain better seizure control, and a belief that one’s physician is the only person who can bring about better seizure control. While physicians are essential in epilepsy care, it’s important for people with seizures to also take ahold of what they can do to improve their seizure control, develop more self-control, and be an active partner with their healthcare team.

A simple but important self-management strategy is that of a daily assessment of your own risk factors for seizures. For example, after waking up, adults with epilepsy can assess the extent to which they had a good night’s sleep, are physically ill, whether or not recent doses of medication have been missed, the extent to which they are stressed mentally and physically, and the other specific risk factors they have learned of over time. Parents can assess children in this same way.

If one or more risk factor is present in the morning, then plans can be made to take care of oneself and hopefully reduce the chance of having a seizure. You can choose to stay closer to home that day, catch up on sleep, take care of an illness, or resume the prescribed dose of a seizure medication. If someone has been under high stress for a while, and has missed several doses of medication, then this person could decide to not take unnecessary stress and risks that day, such as engaging in strenuous activities, going on an overnight stay, or staying up studying late at night. While this is not a failsafe method to prevent all uncontrolled seizures, it does allow one to monitor the processes that could affect seizure activity and make choices that could reduce the risk for seizures.

An important part of self-management in epilepsy is daily awareness of our emotional well-being. People who struggle with significant depression, anxiety, anger, or bitterness may be at risk for increased seizure activity due to the effect of these emotions on one’s sleep, nutritional intake, social connectedness, and medication use. Whether we have epilepsy or not, all of us will go through times in which we are somewhat down, nervous, or upset about something. These emotions are a normal part of life. However, when they become chronic and more severe, they then have a greater chance of negatively affecting our health.

The first step in change is developing better awareness. We can learn to pause and ask ourselves throughout the day how we are doing emotionally. Some people benefit from writing on a calendar and rating the intensity of their emotions from 0-10, and then are able to learn what triggers their feelings. Lower-level emotions can be addressed by seeking out emotional support from friends and family, exercising, talking about underlying issues, or distracting oneself. For intense emotions, especially ones that are chronic or harmful, it can be helpful to not only obtain support from family and friends but also to discuss them with our healthcare team, a community elder, clergy, and/or mental health counselors. The bottom line is not to ignore our emotional status, because it can color our world and affect our health more than we realize.

Here are two guides to understanding and addressing emotions:

In some people with epilepsy, seizures can result in social withdrawal and isolation. Unfortunately, seizures can sometimes be embarrassing, create stigma, and cause feelings of low self-worth. These experiences may form a barrier to living a better life. People with epilepsy who have good social support feel less disabled then do people who have minimal social support. This was identified in a study by Dr. Grant in 1985, and has also been found in more recent studies. As with other chronic medical conditions, it is important for people with epilepsy to look for ways to stay connected with positive people, develop and maintain meaningful activities, and form a core of close friends who understand and believe in them.

Both children and adults with epilepsy can benefit from learning how to believe in themselves and have pride in who they are as a person. This is easier said than done for many people, including those who are experiencing uncontrolled seizures. Parents often are looking for ways for their children with epilepsy to stay connected and to have positive friends. They may benefit from talking with other parents about how they accomplish this. Adults with seizures often greatly desire close connections with others and want support, but may be fearful of rejection or too shy to pursue this. The main point here is that living with epilepsy does not have to include isolation and low self-esteem. Assistance is available from your healthcare team and from the Epilepsy Foundation of Minnesota, both of whom can help you access programs, support groups, and other means of support.

Speaking of resources, here are some online programs that can help you develop your self-management knowledge and skills:

Here are a few books that might be helpful:

  • Living a Healthy Life with Chronic Conditions: Self-Management of Heart Disease, Arthritis, Diabetes, Depression, Asthma, Bronchitis, Emphysema and Other Physical and Mental Health Conditions, Fourth Edition, by K. Lorig DrPH, et al., 2012
  • The Relaxation and Stress Reduction Workbook, 7th Edition, by Davis and Eshelman, 2019

I also am a strong believer in epilepsy camps as a way for children and teens to learn better self-management: efmn.org/camp

In closing, self-management of epilepsy is as much about developing an attitude toward yourself and your health as it is about specific actions that you might do. I join Dr. Rogin and Ms. Sierzant in encouraging you to be an active participant in your epilepsy care by

• Developing a good relationship with your healthcare team,
• Using medication as prescribed, and
• Having frequent discussions with your healthcare team about medication, side effects, other treatment options, and your quality of life.
• Seek out the knowledge and wisdom of others with epilepsy, as this is a rich resource for all of us.
• Guard against isolation and low self-esteem by taking small risks to connect, and valuing who you are as a person.
• Build skills in managing stress, be aware of your emotions and how they influence your health, and seek opportunities for growth.
• Discover parts of yourself that represent strength and help those parts flourish in spite of having epilepsy.
• Manage your epilepsy rather than letting it manage you!
By rounding out your knowledge and skills as a person in these ways, it’s possible for you to live a better life with epilepsy.

Epilepsy Foundation of Minnesota appoints Jenna Carter as new Executive Director.