• By Susan Barber Lindquist

Expert alert: Communication with care team helps patients with epilepsy reach goals

November 19, 2018

female doctor giving advice to a female patient

ROCHESTER, Minn. — You’ve likely heard it before: Communication with your health care team helps you better manage your illness. David Burkholder, M.D., a Mayo Clinic neurologist, says that’s especially true for patients and their families dealing with a complex disorder like epilepsy.

Epilepsy is a central nervous system disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations and sometimes loss of awareness. Seizure symptoms vary widely. Some people with epilepsy simply stare blankly for a few seconds during a seizure. Others may have repeated spasms in their arms or legs.

Make sure your health care provider knows your wishes related to school or employment, for example, Dr. Burkholder says. Patients may have questions or concerns about how medications or surgery to control seizures may affect their independence or social life.

“Something I will tell my patients is that I’m a hammer,” Dr. Burkholder says. “When I see a nail, I want to hit it. My nail in this case is zero seizures. In doing so, I may not have the big picture. I may not understand what any individual person’s life is like and the problems they may have with their epilepsy outside the seizures themselves. It’s important to voice those goals, so we’re all on the same page.”

Watch: Dr. David Burkholder discusses epilipsy 

Epilepsy is one of the most common neurologic conditions in the U.S., affecting about 3.4 million people, according to the Epilepsy Foundation. November is National Epilepsy Awareness Month.

Dr. Burkholder shares tips that patients and families can consider for visits with their health care provider and times in between:

  • Prepare ahead of time.
    Leading up to your appointment, write down questions you want answered. If you have more questions later, ask if your care team can answer them by letter or in a secure online patient or website.
  • Bring someone with you.
    Much of the time, people with epilepsy may need help giving information because they often do not know what happens during and/or after their seizures, or how often they happen. Someone familiar with your seizures can help answer these questions.
  • Provide details.
    Specific information guides care during office visits and through messages between visits. Be ready with information about types of seizures, how often they happen, how long seizures last, names and doses of medications, the nature of any side effects, and how things have changed over time. These details can help make sure medical decisions can be made quickly, when needed.
  • Take notes during the visit.
    It’s easy to forget things. This may be especially true when talking about things that are complex and affect health and well-being. Taking notes during visits makes sure you do not miss important information.
  • Ask questions about the epilepsy care team.
    Many epilepsy centers have a team of professionals working for their patients. Physicians, advanced-practice providers, nurses and others work together for the patient and family. Don’t be afraid to ask these people how they will help provide care.
  • Know when and how to contact your care team.
    There are many reasons you may need to contact your epilepsy care team in between appointments. Discuss how to contact them in case of emergency and the best way to reach them for less urgent questions or concerns.

Dr. Burkholder encourages patients to be open and honest with their epilepsy care team, and feel empowered to tell caregivers what you need them to know.

“Never feel embarrassed, or shy or worried, about the questions you have,” Dr. Burkholder says. “[Your questions] will be answered if you ask them, but they won’t if you don’t. So never be afraid to ask.”

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