Roles of seeing an epileptologist and lifestyle changes for epilepsy

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

@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

@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

Hi @jakedduck1,
Your sentence "just because a person has epilepsy, it doesn't mean they have to stop living" perfectly captures how I approach life with epilepsy.
For instance, I haven't given up swimming because of my condition, though I've made one important adjustment—I no longer swim alone like I used to. It's a simple precaution that lets me continue enjoying something I like.
Looking back, I remember one of the first doctors I consulted after my diagnosis advised me to stop swimming, cycling, and even walking alone. Rather than filling me with confidence about managing my condition, this approach only created fear and felt unnecessarily limiting. I chose a different path—continuing my activities while taking reasonable precautions, which my current doctor supports. The only activity I have stopped is driving, which was the right decision for my safety and others.
I share some valuable resources about staying active with epilepsy that might benefit you and others in our group:
Epilepsy, Seizures, Physical Exercise, and Sports: A Report From the ILAE Task Force on Sports and Epilepsy
https://www.cureepilepsy.org/news/epilepsy-seizures-physical-exercise-and-sports-a-report-from-the-ilae-task-force-on-sports-and-epilepsy/
Epilepsy and Exercise
https://www.betterhealth.vic.gov.au/health/ConditionsAndTreatments/epilepsy-and-exercise
ILAE Podcast: Exercise and epilepsy: Research and myths
[You'll need to add the URL for this resource]
Chris

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!

@santosha I had my final visit with my 16 year patient / neurologist on Oct. 31st. As I think I may have mentioned, he is retiring. We both knew what each other wanted to share, meaning a hug like a quarterback and a wide receiver, one of which would be retiring at the end of the season. You had to keep it professional though. We ended the visit with both of us knowing that we had a true, trusting camaraderie between each other over a period of 16 years. Tough to deal with for me. He's got to feel good though as I am now seizure-free for 16 months. He forwarded my files to an epileptologist, hoping she would add me as a patient. She denied it. So, I'm going to stay with the same Baptist Health group. I feel comfortable though because his assistant went out of her way to say don't worry, the doctor wanted me to be taken care of. He will be missed.

Thanks for your support. No, the epileptologist gave no reason for not accepting. I'll bet she is over worked right now.