Roles of seeing an epileptologist and lifestyle changes for epilepsy

@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)

I take the opposite view. We have no clue how many or how often we are going to get seizures. There is just a tremendous amount of unknown information regarding seizures. One may have x amount of seizures per month or none at all and it can change as we move thru time. So sorry, I say buying a threadmill has nothing to do with having or not having seizures.
Same with taking a certain pill and saying you have not had a seizure because of the pill. What if you did not take the pill? Would you still not have the seizures? UNKNOWN. I stopped taking Keppra 2 months ago because of side effects and have not had a seizure since. Mmmmm....interesting thoughts. God Bless
Ray Hippele

Hi @royanthony,
Congratulations on 13 months seizure-free! That's wonderful news, and it sounds like you've found a combination that's really working for you. I'm so happy for you! 😊
It's amazing how much lifestyle changes can impact seizure control. I've experienced similar benefits from lifestyle adjustments myself.
It must be bittersweet to transition from a neurologist you've worked with for 16 years, especially one who helped you achieve such positive results. Having 13 epileptologists nearby is a valuable resource, though.
Do you already have an epileptologist at this hospital in mind? I'm curious about what criteria you're using to select one from the 13 available options—that's quite a selection to choose from! Perhaps your neurologist could help you with some recommendations before he retires? His insights about your specific case and what has worked for you could be invaluable in finding the right fit.
Best of luck with the transition!

I appreciate your comments here. The 13 is the 1st in almost 30 years. Your suggestion on asking my present neurologist is the way I'll go. No, I don't know the name of a epileptologist here in this area. I'll address that with my present neurologist, as well. My present neurologist has been a blessing. Over the years I know he spent hours of time dealing with my health insurance company as each year he's had a ton of insurance paperwork to complete so I can obtain my Brand name meds. I feel comfortable stating that he likely did not get paid for some of this time. Generic meds don't work for me, as confirmed partially by my being able to reach the 13. In summary, I'll use your suggestion and yes, for me I'll experience some personal emotion.

Good Morning @royanthony
How nice to hear that your current neurologist has been such a blessing throughout your epilepsy journey in the past 16 years. Having that kind of consistent, trusted care over so many years is truly invaluable. I hope he helps you find a substitute that will also be a blessing to you 🙏.
I'm curious to know: Is he a neurologist with a specialization in epilepsy, or does he have a broader neurology practice?

@hippele, you're right that there is still a lot that is unknown about seizures and research continues to make advances in care. That said, there is a lot that we do know. There are different treatment options that are effective for many patients. Here's some useful information about treatment options from Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/epilepsy/diagnosis-treatment/drc-20350098

It is also known that for some people, the right fitness and nutrition plan can be big part of managing epilepsy. For example, the right diet and exercise can improve your seizure control, to which some Connect members have attested. Of course, it’s important to understand how to safely approach nutrition and exercise, and it's advisable to check with your care team.

Some people find it helpful to keep a journal to help discover if their seizures occur in a pattern or are more likely to occur in certain situations. Sometimes is just by chance, but other times it’s not. Keeping track can help identify seizure triggers.

Please also note that all information shared by members on the Mayo Clinic Connect is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health. Never disregard professional medical advice or delay in seeking it because of something you have read on the community.

Hippele, I'm glad to hear that you remain seizure-free since discontinuing treatment. This seems to be right for you. Did you discontinue treatment under the guidance of your doctor? Have you had any non-seizure symptoms?

No, it was my decision to ween off the Keppra. Doctors aren't going to tell you to stop taking any pills necessarily. They have liability issues to contend with. Now, if you were on a pill and seizure free for say 1 yr, sure they could comfortably suggest you ween off if you decide to. But they cant just suggest you stop your medication because if some issue happened, the doctor could be sued and therein lies their liability issue. In my case, I feel its my body and I am very well read in seizure information and therefore I am in the best position to made decisions ALONG with my doctor.
On another point in this discussion was nutrition and exercise. Well, my view is anybody, whether epileptic, sick, healthy or otherwise should ALWAYS be eating nutritious food AND exercising all the time. Just because you are sick, you decide to exercise or eat healthy?? Ha, a little late for that isn't it?
Hope my words stir some discussion. Interesting stuff.. God Bless...
Ray Hippele