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What Is An Epileptologist, and When Should I See One?

If you or a loved one has epilepsy, you may have heard the term epileptologist. You may have wondered what the word means and how it applies to epilepsy care.

What is an epileptologist?

An epileptologist is a neurologist who specializes in diagnosing and treating people with epilepsy. They have a specific interest in epilepsy and devote most of their time and training to studying the condition.1

Data shows that of the 2.7 million Americans who have epilepsy, 30 percent do not have control over their condition and have uncontrolled seizures. But not everyone with epilepsy needs to see an epileptologist. It is important to know if you fall into that category and how to move forward if you do.2

Epileptologist vs. neurologist

Epileptologists and neurologists are similar. However, it is helpful to understand the differences between them. First, the differences between their definitions:1

  • Neurologists – Doctors who complete medical school and 4 years of a neurology residency
  • Epileptologists – Neurologists who have completed their residency in addition to a fellowship or subspecialty training in seizures and epilepsy

It is very common for neurologists to have additional years of training in a subspecialty. For instance, neurologists might go on to study stroke, movement disorders, or neuromuscular disease, just to name a few examples.1

For epileptologists, their expertise lies in seizures and seizure disorders, as well as anticonvulsants and advanced treatment options such as epilepsy surgery.3

Having a reliable epilepsy care team

Epilepsy care typically begins with a visit to a person’s primary care doctor. These doctors are general practitioners, which means they are often the first point of entry into the healthcare system.4

A person will then go onto the next stage in their epilepsy care, which involves seeing a neurologist for diagnosis and treatment. For many people, this is sufficient and provides them with a reliable care team to depend on. They have a treatment plan that works for them. They can continue to see their primary care doctor, with occasional visits to their neurologist.1,2

When should you see an epileptologist?

Most people with epilepsy can be treated by a general neurologist. However, there are certain reasons why someone might need to see an epileptologist. These include:2,5

  • If seizures are not under control after 3 months of treatment by a neurologist
  • If epilepsy drugs are not working
  • If experiencing negative side effects from epilepsy drugs
  • If you are pregnant or are planning to become pregnant
  • If you have other medical conditions that are affecting your epilepsy

Benefits of an epileptologist

There are many benefits of seeing an epileptologist. Because they have more experience in diagnosing and treating people with epilepsy, they often have more resources at their fingertips.

It begins with an accurate diagnosis. People with epilepsy are usually admitted to an epilepsy monitoring unit (EMU) to confirm a diagnosis and identify the type of seizures a person has, and whether they might benefit from epilepsy surgery.3

Several other diagnostic tools and procedures are in an epileptologist's toolkit. These often include:2

  • Electroencephalographic monitoring (EEG) – This test monitors electrical activity in the brain
  • Intracranial electrode placement – This procedure places electrodes directly on the surface of the brain for better EEG monitoring
  • Vagus nerve stimulator (VNS) – This procedure implants a device that sends electrical signals to the vagus nerve, helping to prevent or shorten the length of seizures

Epileptologists may also know about more advanced and experimental treatment options. For example, some complex epilepsy surgeries are only available at specific epilepsy centers. Epileptologists may be able to help arrange these surgeries for people who qualify, including:2

  • Lesionectomy – A procedure that removes a small lesion in the brain that causes seizures
  • Anterior temporal lobectomy – A procedure that removes a portion of the temporal lobe

If you or someone you love has epilepsy and treatment is not working, speak with your primary care doctor or neurologist about whether you should consult with an epileptologist. They may be able to provide treatment methods that meet your specific epilepsy needs.

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