An epileptologist is a neurologist who specializes in the treatment of epilepsy. Epileptologists may be either pediatric or adult neurologists.

Epilepsy: The Basics

Epilepsy is a category of brain disorders in which abnormal electrical activity in the brain causes seizures. These seizures often recur and may have no apparent outside trigger.

Several different types of seizure disorders fall under the heading of “epilepsy.” Some of the more common types of epilepsy include:

●     Temporal lobe epilepsy (TLE): The most common form of focal epilepsy, TLE can nevertheless pose challenges. Medication may reduce but not eliminate seizures and patients with drug-resistant TLE are at higher risk for memory and mood issues.

●     Neocortical epilepsy: Neocortical epilepsy originates in the neocortex. Common causes include brain lesions, traumatic brain injuries, infection, and abnormal brain development in utero.

●     Juvenile myoclonic epilepsy (JME): The most common form of generalized epilepsy, JME typically begins in adolescence. It is characterized by myoclonic seizures, which often occur shortly after waking.

●     Lennox-Gastaut Syndrome (LGS): A severe form of epilepsy that typically manifests during infancy or early childhood. LGS patients may experience several different types of seizures, along with cognitive dysfunction, learning difficulties, and behavioral problems.

●     Symptomatic epilepsy: Symptomatic epilepsy occurs when epilepsy follows some type of damage to the brain that is known to be a cause of epilepsy. Some forms of traumatic brain injury, central nervous system infections, strokes, brain tumors, and certain surgeries may lead to symptomatic epilepsy.

●     Absence epilepsy: Absence epilepsy is characterized by absence seizures. Absence seizures are spells of impaired consciousness; to the outside observer, they may look like staring spells, as if the person is “absent” from their own mind. Absence epilepsy typically begins in childhood.

Other types of epilepsy also exist, some of which are quite rare. Some rare forms of epilepsy are linked to specific genetic mutations; the cause of others remains unknown.

In addition, humans can experience seizures that are not caused by abnormal electrical activity in the brain. Low blood sugar and alcohol withdrawal, for example, are two common causes of nonepileptic seizures. One of the first steps in addressing seizures is to determine their cause.

Epileptic seizures can vary widely in their severity, duration, and effects, depending on which areas of the brain are affected by abnormal electrical activity. A typical seizure lasts from a few seconds to a few minutes, and many affect perception and memory. Uncontrolled seizures can interfere with a person’s ability to work, drive, or live independently.

Epilepsy is one of the most common neurologic diseases, affecting approximately 1 percent of the population (or about 3.3 million people in the US). The Epilepsy Foundation ranks epilepsy as the third most common neurological disorder in the US, following Alzheimer’s disease and stroke.

What Do Epileptologists Do?

Epileptologists most often treat seizure disorders whose complexity is beyond that of a primary care physician or neurologist. Consequently, they often step in after epilepsy has already been diagnosed and possibly when the condition has worsened.

That said, epileptologists may perform various tests or screenings in order to gather more information. Common tests and screening exams used by epileptologists include:

●     Electroencephalogram (EEG): EEGs use electrodes attached to the scalp to record electrical activity in the brain. An EEG is among the most commonly used tests to diagnose seizure disorders.

●     Video EEG monitoring: A combination of EEG and video monitoring may be used to track a patient’s brain activity over hours or days. Video EEG monitoring may track a patient’s seizure activity during sleep, for example. A more invasive version of this method employs a neurosurgeon to place electrodes inside the patient’s head to pinpoint the location of seizure activity in the brain.

●     Neuropsychological testing: Neuropsychological testing is used to evaluate a patient’s cognitive function, memory, and ability to navigate language.

●     Imaging tests: Imaging may be used to find the sites and potential causes of seizures. Commonly used imaging tests include computed tomography (CT), magnetic resonance imaging (MRI), and positron emission tomography (PET) scans. In some cases, multiple types of imaging may be combined to provide more information on both the structure and functioning of the brain.

●     Lumbar puncture: A lumbar puncture or “spinal tap” draws a sample of cerebrospinal fluid, which can then be tested for bleeding, infections, or other causes of seizures.

The most common treatment for epilepsy is medication. Accordingly, Barnes-Jewish Hospital estimates that 60 to 70% of its patients experience greater control of their seizures when placed on the appropriate medication. Epileptologists may prescribe medication for the treatment of seizure disorders.

Non-medication treatments for epilepsy include the use of surgically implantable devices, like vagus nerve stimulators (VNS) or responsive neurostimulation (RNS). These devices send electrical pulses to the brain to reduce or stop seizures. Surgical procedures may also be an option for some patients; they include a focal resection, temporal lobe epilepsy surgery, and brain laser surgery.

While epileptologists may recommend surgery for a particular patient, they generally do not perform surgery for epilepsy or other seizure disorders. An epileptologist may work with a neurosurgeon when surgery is among the treatment options.

Epileptology vs. Neurology

Epileptology is one of many subjects that fall under the heading of neurology (others include stroke, neuromuscular diseases, and movement disorders). Generally speaking, a neurologist will have at least some knowledge or experience of epilepsy, gained during their education, residency, and/or in medical practice.

Not all patients with epilepsy require treatment by a specialized epileptologist and, in fact, many patients have their epilepsy treated by a neurologist, a primary care physician or both. In 2017, for example, the CDC estimated that 27.1 percent of epilepsy patients saw only their primary care physician, while 53 percent saw both their primary care doctor and a neurologist. Nine percent of patients saw only a neurologist or epileptologist.

Patients whose seizures are difficult to control are more likely to need the services of an epileptologist. The Epilepsy Foundation notes that about 30 percent of patients may find that their first two or three medication trials fail to control their seizures. In these instances, the Epilepsy Foundation recommends patients seek specialized epileptology care. The Foundation also recommends patients seek the help of an epileptologist if they are pregnant, dealing with medication side effects, or facing complications related to disability or driving.

Despite specializing in a relatively common neurologic disorder, epileptologists remain somewhat mysterious to the general public. A  poll by the Northeast Regional Epilepsy Group, for example, found that nearly 40 percent of respondents did not know what an epileptologist does.

Epileptology Qualifications

Since an epileptologist is a neurologist who specializes in epilepsy, epileptologists possess the underlying qualifications required of all neurologists. In the US, these qualifications include completion of an MD or DO degree, an internship, and a residency in neurology or pediatric neurology.

In addition, an expert in epileptology should have completed one or more fellowships in epilepsy. Fellowship work may include performing scientific research, diagnosing and treating patients, performing other clinical duties, focusing on prevention, or a combination of any of the above.

In 2010, the American Board of Psychiatry and Neurology began offering subspecialty certifications in epilepsy; the American College of Graduate Medical Education (ACGME)-accredited fellowships in epilepsy have been available since the mid-2010s. While board certification in not specifically required for epileptology, it can nevertheless indicate a minimum level of training, expertise, and understanding about epilepsy.

When evaluating potential experts in epileptology, it is important to consider not only the existence of fellowship work in epilepsy but also the type of fellowship(s) completed. Fellowships may vary in the amount of patient care versus clinical work involved, the type of care setting, and the number of patients or cases handled. An epileptologist who works primarily with patients in a specialized private practice, for example, will have different experiences and thus different perspectives than one who primarily analyses test results in a high-volume hospital setting.

When Is an Epileptologist Needed?

Epileptologists specialize in understanding:

●     Epileptic seizures and seizure disorders

●     The use, operation, and side effects of anticonvulsants

●     Special situations involving seizures, such as treatment-resistant seizures and seizures in pregnancy

In addition, some epileptologists further specialize in pediatric epilepsy, adult epilepsy, or the treatment of epilepsy in women or in pregnancy.

For patients, an epileptologist may be necessary when attempts by a primary care physician or neurologist to treat the patient’s seizures have failed, or when the patient has complicating factors like pregnancy or drug sensitivities that make treatment more challenging.

For attorneys, an expert in epileptology may be necessary when:

●     A case involves issues surrounding the origin, onset, or triggers of seizures.

●     The type of seizure and its effects need diagnosis or clarification.

●     An expert opinion on the standard of care for treatment of epilepsy is needed.

●     A case involves an individual’s treatment or prognosis regarding epilepsy.

●     It is necessary to determine whether seizures are caused by epilepsy or not, or to determine the cause of an individual’s particular form of epilepsy.

An expert witness in epileptology can dig more deeply into issues related to epilepsy and seizures than a neurology expert with no epileptology specialization.

Attorneys may also wish to consult an epileptologist even when an expert report or testimony is not required for the case itself. An epileptologist can also help clarify technical terminology or topics for a legal team. They can also provide concrete explanations of specialized topics in epileptology.

More Information on Epileptology

Additional sources of epileptology information include journals, directories of epileptology centers and practitioners, and other publications and resources.

Journals

●     The Journal of Epileptology “is an international, peer reviewed scientific journal that publishes articles of clinical and experimental epilepsy.” Early editions are available for free online, or the paper version is available via subscription.

●     Seminars in Epileptology provides “articles of high didactic value that are relevant to general neurologists and child neurologists and focus on general knowledge or everyday clinical practice in care,” according to the journal’s website.

●     Epileptology. Discontinued in 2016, prior volumes of Epileptology nonetheless remain available online.

Directories

●     Epilepsy Center Locations: A list of accredited epilepsy centers compiled by the National Association of Epilepsy Centers (NAEC). The list is updated periodically.

●     Find an Epilepsy Specialist: A search tool maintained by the Epilepsy Foundation in collaboration with the American Epilepsy Society (AES). 

Further Reading

●     American Board of Psychiatry and Neurology: A member of the American Board of Medical Specialties (ABMS), the American Board of Psychiatry and Neurology oversees certifications in neurology and its subspecialties, including certification in epilepsy.

●     Epilepsy Foundation: Resources for Attorneys: A compilation of cases involving epilepsy, maintained by the Epilepsy Foundation. The collection covers a number of topics, including discrimination, insurance, and physician liability.

●     National Institute of Neurological Disorders and Stroke: Part of the National Institutes of Health, the NINDS provides access to research and public health information on a variety of neurologic disorders, including epilepsy.