According epileptologist Aatif M. Husain, MD, many adults and children living with epilepsy could benefit from care delivered by a specialized epilepsy program, like the Duke Comprehensive Epilepsy Center (DCEC).
“Adults and children in Wake County have access to highly specialized epilepsy care through diagnosis, treatment, and long-term management,” says Husain.
However, several barriers prevent patients from getting the care they need.
To refer a patient to an epileptologist, call 919-385-3223.
To refer a patient to Duke's Epilepsy Center, call 919-385-3223.
Expanding knowledge, access
“Sometimes, the status quo keeps patients from seeking advanced care for their epilepsy,” says Husain. “Patients often live with side effects from their condition or medications, thinking that there are no other options. They may not realize that they may feel a lot better e following a more comprehensive evaluation and alternative treatment plan.”
In some cases, primary care teams don’t realize that a designated epilepsy center could benefit their patients. “Each patient’s epilepsy is unique, so it can be challenging to know which patients to refer for a higher level of care,” says Husain.
One common misconception is that a referral to an epilepsy center commits a patient to neurosurgery. “There are many treatment options for patients — surgery may be one of them, but we can often achieve great outcomes with medication or noninvasive procedures,” says Husain.
Diagnostic, treatment challenges
Some conditions mimic epilepsy, making it challenging to diagnose. For example, psychogenic nonepileptic spells are common and can present like seizures; however, they require a very different treatment. Misdiagnosis of spells as seizures, or vice versa, could lead to inappropriate and ineffective treatment.
Antiseizure medication (ASM) is often the first line of treatment, though only 60-70% of people with epilepsy will have control of seizures with one or two ASMs with acceptable side effects. Drug-resistant epilepsy (DRE) is diagnosable when seizures are not fully controlled after a trial of two appropriately selected ASMs given in correct doses with tolerable side effects.
Epilepsy can present with nuances that require a higher level of diagnosis, treatment, and monitoring, says Husain. “We want to work with local primary care providers, pediatricians, and community neurologists to help their patients achieve the best outcomes and quality of life — when you refer to the epilepsy center, we’ll collaborate as a team,” says Husain.
No seizure, no side-effects goal
It’s important for people with suspected epilepsy to get an appropriate diagnosis and treatment plan as soon as possible, because seizures can cause serious harm, such as injury, neurologic damage, and psychosocial consequences.
“We aim for the ‘no seizure, no side-effect’ goal while preserving patients’ health and function,” says Husain.
Once a referral is made to the program, Husain’s team prioritizes getting patients evaluated quickly. “Epilepsy is a long-term condition, but we want to help patients resolve uncontrolled seizures or unwanted side-effects as soon possible.”