Epileptologist

@royanthony
I find it much more common for patients to see a neurologist. I live in the Central Valley of California, and the nearest epileptologist is about 80 miles away in the San Francisco Bay Area. Typically, patients are referred to epileptologists at epilepsy monitoring units for an accurate diagnosis and advanced treatment options.
My first seizure occurred on a Saturday, so I went to see my primary care doctor who 60 years ago opened their office to see patients on weekends. Two days later, I saw a neurosurgeon who confirmed that I had epilepsy. Unfortunately, their diagnosis was correct. That was back when a person didn't have to have two unprovoked seizures to be diagnosed with epilepsy. A few years later, I visited an epilepsy monitoring unit and saw an epileptologist, but I only met with him while I was hospitalized in the unit.
I saw neurosurgeons after for a number of years after. Then neurologists until a couple of years ago when he passed away. Currently my new primary care physician tends to my seizure needs.
Take care,
Jake

I saw a neurosurgeon until I saw the epileptologist.

Great question you have brought to discussion, @royanthony !
I agree with @jakedduck1 that it is more common for patients with epilepsy to see a neurologist. I see that there is still a shortfall of epileptologists or neurologists with expertise in epilepsy in my country (Brazil) as well. My initial journeys with neurologists have not been the most positive ones. At that time, I did not even know that the specialty of epileptology existed, and I understand that many still do not know about it.
In my first journey with neurologists, when my seizures started at puberty, the epilepsy diagnosis was missed, leading to over 30 years of untreated epilepsy. After finally being diagnosed by a psychiatrist in 2019, my second journey involved multiple neurologists with unsuccessful treatments. The breakthrough came in 2021 with an epileptologist. Unlike previous neurologists who followed standard protocols, this specialist provided truly individualized treatment and viewed me as a whole person, not just a condition. Under his care, I regained control of my life. Unfortunately, I had to leave his practice in 2024 due to disagreements regarding my mother's Alzheimer's treatment, as this disease falls outside his specialty.
Currently, I'm under the care of a neurosurgeon-neurologist who maintains a similar individualized approach. Remarkably, I am now on an AED that I did not tried before at a dosage below even pediatric recommendations. Happily, I am controlling my seizures well with manageable side-effects :-). As my doctor always keep telling me "Everyone is unique"!.
My opinion today is that if you are struggling in your epilepsy journey, it is best to see an epileptologist. This does not mean that there are not good neurologists who can treat epilepsy, but I find it more rare.
And you @royanthony, what has been your experience with your neurologist? Did he or she carry out an individualized approach in your epilepsy treatment?
@jakedduck1, I recognize that many people don't have the luxury of being treated by an epileptologist. An 80-mile trip isn't realistic for regular appointments. But after COVID, things have changed here in Brazil. More and more doctors are accepting virtual appointments. How is that in the United States? Have you considered such an option?

After 16 years working with my neurologist who is retiring, I have been seizure free for 13 months. Prior to that,
maybe 1 or 2 seizures per your with the same meds. I made a change in lifestyle starting in May of 2024, accepting the fact I need 9 hours of sleep minimum each night and limiting aerobic exercise outdoors. Bought a Pelaton treadmill. Not cheap but I think it's contributing to my not having seizures. I am fortunate to live in an area with a hospital that has 13 epileptologists within 20 miles of my home.

I meant to state 1 or 2 seizures per year (not your)