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What could doctors do better for people with epilepsy?
Epilepsy & Seizures | Last Active: Apr 2 7:15am | Replies (71)Comment receiving replies
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?
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@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.