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.”
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:
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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