Roles of seeing an epileptologist and lifestyle changes for epilepsy

I'd consider him one that specializes in epilpsy. I was refered to him by my GP, who by the way has been my GP for 16 years. I'm sure he'll be retiring soon. I'm spoiled by the relationship with these doctors. Their interest in you personally, I'm sure will be hard to replace.

Thanks @royanthony !
This confirms my feeling and personal experience so far that neurologists with specialization in epilepsy or epileptologists can make a lot of difference in our epilepsy journey.
You've been truly blessed with both your GP and neurologist - I'm so happy for you! 😊 Experienced doctors like yours usually have excellent networks and can guide you toward colleagues who share their patient-centered approach to care. Try not to worry too much about finding a replacement.
My family had a wonderful GP in the past, but sadly he passed away while I was still a teenager, and we never quite found an adequate replacement. GPs here in Brazil have become rare, which sometimes drives me crazy - constantly going from one specialist to another without that central coordination.
@jakedduck1, you've had such a long journey with epilepsy, and I understand you've been treated by various doctors over the decades. From your experience, have you noticed a significant difference in treatment quality and care when working with a neurologist with specialization in epilepsy or an epileptologist versus general neurologists?
I'd love to hear from other members what their experiences have been in this regard.
Chris

@santosha
Good evening Chris,
I saw three Neurosurgeons that I liked and also have seen an epileptologist and many general neurologists. I think it's really the luck of the draw. I believe that different doctors have different ideas, knowledge and abilities. Specialists, in my opinion are not always the most skilled. The Neurologist that stopped, my seizures after 45 years was a general neurologist. unfortunately, he passed away a couple years ago. Of all the people I've seen over the all too many years, he seemed the most knowledgeable and considered my points of view unlike the epileptologist at Stanford University who had a defeatist and negative attitude. He also thought he was a clairvoyant. He said I’d have frequent seizures until I died. Now my new primary care doctor is taking care of my seizure medicines. He just arranged refills for 1 year. My last primary care doctor often didn't refill my medicine on time.
Epileptologists should be the most knowledgable, and I believe they usually are. but being an apple apologist, does it automatically qualify you as the most highly qualified?
Take care,
Jake

Good Morning @jakedduck1
Thank you for sharing this long journey with the doctors who have treated your epilepsy. I agree with you; finding the right doctor is also a matter of luck.
Reading between the lines of your message, my understanding is that the doctors who treated you best were the ones who had a caring and humanized approach with their patients, focused on treating the whole person, not just the disease. Did I capture that well?
When you said "Specialists, in my opinion, are not always the most skilled," it made me remember the first epileptologist I went to. She is a reference in epilepsy in Brazil, an academic who has trained many neurologists in the country (including my current doctor). She gave me the correct diagnosis of my type of epilepsy just by asking me questions. She looked at my exams afterwards. I was amazed. But she lacked this humanized approach, unfortunately.
The individual doctor's approach often matters more than their specialty credentials!
Have a nice weekend!
Chris

Absolutely, Chris (@santosha). It’s such a daunting task to find a doctor who truly sees the whole person and values their thoughts and opinions. I was fortunate to find such a doctor, and he made a tremendous difference by stopping my seizures after being uncontrollable for almost half a century. Tragically, a few years later, he passed away from a heart attack at home. I feel privileged and incredibly grateful to have had him in my life, even if it was only for a short time. It’s a reminder of how valuable and rare the relationships we have with our health care providers and them with us.
I hope everyone can be as fortunate as I have been.
Wishing you all the best,
Jake

@hippele
I can't say for sure what effect the treadmill will have regarding seizures @royanthony is using however, it is believed exercise is beneficial in people have seizures and fewer seizures are experienced in some people. Speaking for myself, I used to swim 5 miles 7 days a week and never once had a seizure in the pool maybe that means something. Maybe it doesn't however, I did have many more seizures when I wasn't active. But I did have seizures when I was walking in malls, walking downtown when mowing the lawn pruning a tree and doing something on the roof which I fell off of twice, so I don't recommend doing that. I wondered if the intensity of the exercise is what may decrease seizures. The problem is people normally with seizures don't participate in exercise type studies so there's not a lot of accurateinformation about it.
as far as not taking a pill and having a seizure, I can tell you with certainty that I would absolutely start seizing if I missed my medication. I speak from experience because every time I have ever missed medicine I've always had seizures many times ending up in the hospital because they wouldn't stop or because so many happened one after another. not taking your medication maybe the best thing for you. I know if I wouldn't have seizures by not taking it I wouldn't. I do personally believe that it would be advisable not to drive for a year or so just to see how everything goes.
as they say better safe than sorry.
All the best,
Jake

I agree with your comments. Again, we just dont know enough about seizures still in 2025. Does exercise help with seizures? It does not specifically help with seizures but helps overall health in ALL ways. I am a big proponent of excercise and do so 6 days a week for years. We all take it day by day and hope for the best. God Bless!
ray hippele

I think that lack of enough sleep can be a seizure trigger for some people. The only thing I’ve heard about exercise and epilepsy is to be careful that whatever you choose to do, it won’t endanger you if you have a seizure while you’re actively exercising. Swimming comes to my mind as somewhat more hazardous.

@methel
Swimming can indeed be dangerous if done alone as can taking a bath but most of the time I had someone swimming next to me and everyone knew I had seizures. Although I did foolishly swim alone in the ocean before.
People with epilepsy play in virtually all professional sports and have also been involved in the Olympics and won numerous metals. Just because a person has epilepsy doesn't mean they have to stop living.
Take care,
Jake

Yes, that’s the odd thing about having epilepsy. Almost all of the time one is completely maybe even boringly “normal” but then briefly, one is not. I find that dissonance hard to handle. Doing everything that everyone else can do, but with in the back of my mind, “What if”.