By Amber Kaiser

If you have been living with epilepsy yourself or as an epilepsy caregiver and stay updated on epilepsy news, you may be aware—and may even already be seeing one if you or your loved one has uncontrolled seizures—that neurologists who specialize in epilepsy, or epilepsy doctors are now called epileptologists. If you or your loved one was diagnosed with epilepsy many years ago, or you were recently diagnosed with epilepsy, you may have never heard of the term until now.

The first time I heard “epileptologist” was in 2018 and I was diagnosed with epilepsy in 2001. Luckily, today, these are neurologists who are now accredited and specialize solely in epilepsy. Anytime someone is diagnosed with epilepsy with uncontrolled seizures, hopefully they are being referred to an epileptologist and sooner rather than later. Realistically, it is highly unlikely though for a few reasons—if your first visit is with a PCP or family doctor, they may not even know the term and will likely refer you to a general neurologist like they have been used to. Even if they do happen to know about epileptologists, they may not be able to refer you to one due to availability—there may not be any in your city, or if there is one, or a few–more likely in metropolitan cities–an epileptologist may have so many patients that they just can’t see any more currently or you have to have your name added to a long wait list, which has been my experience recently with having to find a new doctor after my previous one retired. I don’t know how many epileptologists there are, but it seems like there are never enough and they are in high demand.

Epileptologist vs. neurologist, how are they different?

Despite the challenges that may come with it like location, cost and wait time, I highly recommend anyone diagnosed with uncontrolled epilepsy (where seizures aren’t managed by medications or other interventions) the opportunity to see an epileptologist. These are neurologists that specialize in epilepsy and ONLY see epilepsy patients; whereas, most neurologists see a variety of people with different neurological conditions like epilepsy, multiple sclerosis, Alzheimer’s disease, Parkinson’s disease and other disorders affecting the brain and central nervous system. Epileptologist doctors can also have a lot more experience in the field and are supposed to always be updated on the latest epilepsy medications or AEDs, brain surgery options, and they may also be working in a Level 3 or Level 4 Epilepsy Center which is the best place for anyone with epilepsy and unmanageable seizures to have access to in regards to experiencing the best epilepsy care. Everywhere from having the latest brain imaging devices and Epilepsy Monitoring Units (EMU) to AED medications and brain surgery options to epileptologists, nurses and other doctors that specialize in epilepsy makes all the difference in patient care. And, the fact that the epilepsy community has these Epilepsy Centers available today is a huge step in the field.

When was the “epileptologist” specialization created?

Not surprisingly, when I searched to learn how long the term “epileptologist” has been around, it was difficult to find. According to Wikipedia, it looks like the certification was first created by the American Board of Psychiatry and Neurology in 2010 and doctors could start earning “accredited fellowships” in the mid-2010s. Doctors being able to become accredited as an epileptologist was just created within the last 10 years.

How to find an epileptologist

The best place to find an experienced epileptologist would be in one of the National Association of Epilepsy Centers, preferably a Level 4. If you have uncontrolled seizures, it is worth it to find the closest accredited Epilepsy Center near you and at least start your connection with them virtually (which most of us know is widely used now due to the pandemic). If you have the type of health insurance where you don’t need referrals from your PCP, that can also make it a lot easier to see doctors that you want, especially when they are “in-network.”

The Epilepsy Foundation also provides a really helpful database in partnership with the American Epilepsy Society to make it easy to find an epileptologist and search even further by their “primary specialty” like SUDEP, brain surgery, adult neurology/epileptology and pediatric neurology/epileptology.

Epileptologists are new in the field of neurology. I hope that it continues to grow and become more of a common specialist doctor’s name we hear like a cardiologist, dermatologist or anesthesiologist. And, if you have any other helpful information to share about epileptologists that I can add here, feel free to email me at amber@neureka.ai.