What could doctors do better for people with epilepsy?

Hi @laura1961 - your replies are going to exactly the right place and are part of this discussion with other Mayo Clinic Connect members in the Epilepsy & Seizures support group:

- What could doctors do better for people with epilepsy? https://connect.mayoclinic.org/discussion/what-could-doctors-do-better-for-people-with-epilepsy/?

What you're describing about medication changes are really tough decisions for a lay person to have to make on their own with no medical training. I do hope your new specialist can provide some guidance. I do not have epilepsy or a seizure disorder personally, but with other medical conditions, I've also found my local pharmacists very helpful at times with tips on when or how to take medications, dealing with side effects or suggesting other medications about which I might ask my doctor.

Are seizures one of the major symptoms you've had since your traumatic brain injury ( TBI)? How frequently do you have them?

@lisalucier Hi Lisa good to know I am using this site the right way after a few days of messaging a few different people regarding issues on seizures. How did you end up in the Epilepsy & seizure support group if you don't have either? Was it through your work at Mayo Clinic? The seizures are the only thing I was left with after the TBI 20 years ago after the DV assault. I have struggled with osteoporosis since I was 30 and only went on medication for 1 year after researching their s/effects too. I am glad I did because I hate to think about what would have happened 30 years later as I am now 64, if I would have followed what the Drs wanted me to do. The medications only work for so many years and then they start doing the opposite & you have to start on different drugs. I have been trying to start a program since 2016 ( which I only started the end of 2025). It is now all over the world, the ONERO program which was started here in Brisbane Australia where I live. I have not been able to drive since 2012 when I refused the seizure meds. I have also been trying to looking after my mother & father who were both unwell so things have been very difficult to organise in my life. My mother was damaged internally after a Dr removed her gallbladder & left her in pain 24/7 for nearly 2 yrs until she had a stroke. She is now in a home after a stroke nearly 3yrs ago which luckily stopped the pain but left her with Alzheimer's & the start of Dementia. My father had Macular Degeneration & Dementia, he passed away in 2016. I have been trying to focus on my own health the last few years especially with these new Drop seizures. I have not done much research into these new drugs yet.

@jakedduck1
Hi Jake,
I agree with you—SUDEP and Status Epilepticus are conditions doctors should discuss more openly with patients. I've learned about both conditions through my own research during my first year of treatment.
There are ways to present this information without causing undue anxiety. Withholding information doesn't protect anyone—it just avoids difficult conversations that doctors should be having.
I'm curious to know what other members' experiences have been in this respect. Were you informed about these conditions by your doctors, or did you discover them on your own?
Chris

Thank you for starting this conversation. I had a doctor who wouldn't listen to my questions. He would patronize me when I asked about the the possible causes of my seizures and he got angry when I brought up the topic of trying to get off of medication. I wish that doctor would have had discussions with me to help me understand my condition and my options. I did change doctors and found one who does discuss things with me. When asked about figuring out the cause and treating that, he at least explained that, because my condition is mild, that he can't expend the time to do that. There are people with far worse conditions and he needs to focus on those. Trying to improve their quality of life is a higher priority. Even those it wasn't the answer I hoped for, I appreciated his candor. Each doctor is different. I hope to find one with the time to delve deeper into the cause of my epilepsy.

@lisalucier Hi Lisa good to know I am using this site the right way after a few days of messaging a few different people regarding issues on seizures. How did you end up in the Epilepsy & seizure support group if you don't have either? Was it through your work at Mayo Clinic? The seizures are the only thing I was left with after the TBI 20 years ago after the DV assault. I have struggled with osteoporosis since I was 30 and only went on medication for 1 year after researching their s/effects too. I am glad I did because I hate to think about what would have happened 30 years later as I am now 64, if I would have followed what the Drs wanted me to do. The medications only work for so many years and then they start doing the opposite & you have to start on different drugs. I have been trying to start a program since 2016 ( which I only started the end of 2025). It is now all over the world, the ONERO program which was started here in Brisbane Australia where I live. I have not been able to drive since 2012 when I refused the seizure meds. I have also been trying to looking after my mother & father who were both unwell so things have been very difficult to organise in my life. My mother was damaged internally after a Dr removed her gallbladder & left her in pain 24/7 for nearly 2 yrs until she had a stroke. She is now in a home after a stroke nearly 3yrs ago which luckily stopped the pain but left her with Alzheimer's & the start of Dementia. My father had Macular Degeneration & Dementia, he passed away in 2016. I have been trying to focus on my own health the last few years especially with these new Drop seizures. I have not done much research into these new drugs yet.

@santosha
I believe the first time I was told about Status Epilepticus was by my parents after I came home from an 8 month long induced coma to control the condition.
The first time I heard about S.U.D.E.P. was on epilepsy society, a British epilepsy forum when someone died of the condition.
Take care,
Jake

actually had two doctors and one that his bedside manner for helping patients was viewed by upper management as too aggressive and caring for his patients. They let him go and a lot of letter were written to MJH but he was still given his walking papers. what a loss. he explained in laymen's terms so you could understand what you were up against. he truly cared for each patient like they were family. the only thing i could change would have been that they kept both doctors, they were that busy. he was truly gifted he didn't give up and looked at every x-ray didn't skip or miss anything dr Griamaldy some hospital will be fortunate to have him and their patients. I would say look at every scan, no skipping not even one. talk to the patient like family.

@randallshields56 Not quite sure what you are saying here? The Dr was good but they let him go?

actually had two doctors and one that his bedside manner for helping patients was viewed by upper management as too aggressive and caring for his patients. They let him go and a lot of letter were written to MJH but he was still given his walking papers. what a loss. he explained in laymen's terms so you could understand what you were up against. he truly cared for each patient like they were family. the only thing i could change would have been that they kept both doctors, they were that busy. he was truly gifted he didn't give up and looked at every x-ray didn't skip or miss anything dr Griamaldy some hospital will be fortunate to have him and their patients. I would say look at every scan, no skipping not even one. talk to the patient like family.