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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
@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.
Replies to "@lisalucier Hi Lisa good to know I am using this site the right way after a..."
@laura1961
Hi Laura,
I can see you've been through far more challenging situations than I could have imagined. I'm so sorry you've experienced all of this. As my neuropsychologist once told me, we can't change the past, though we can learn from it. I try to focus on living in the present—something yoga has really helped me with.
I see @lisalucier has already addressed your questions in this discussion. While we're all learning about epilepsy and supporting each other here, we're not doctors and don't have their specialized knowledge. I'd encourage you to find an epilepsy specialist who can give you the comprehensive care you need. It took me a while to find the right doctor for my epilepsy, but the effort was definitely worthwhile.
Have you had a chance to work with a psychologist or neuropsychologist during these challenging times?
Please don't hesitate to reach out with any questions!
Chris
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@laura1961 - I am following the Epilepsy & Seizures support group because I am the moderator for this group and work at Mayo Clinic. As you've hopefully begun to see, this is a great support group where members really try to support each other with epilepsy and treatment information from their experiences, and they also provide great emotional support to one another.
It sounds as though you've had a number of really rough experiences. I can't imagine the pain and fright of being a victim of domestic violence, and I'm so sorry that happened to you. I'm also sorry that the DV led to a traumatic brain injury, which then triggered seizures. That is quite a progression.
Since you mentioned that you have a TBI and osteoporosis, I wanted to suggest you might check out and follow these Mayo Clinic Connect support groups:
- Traumatic Brain Injury (TBI) Support Group https://connect.mayoclinic.org/group/traumatic-brain-injury-tbi/
- Osteoporosis & Bone Health Support Group https://connect.mayoclinic.org/group/osteoporosis/
It sounds as though you've been very kind and diligent in looking after your mother and father during their illnesses. Given what you said about your mother's medical history, these are some other groups on Mayo Clinic Connect you may want to check out and follow:
- Stroke & Cerebrovascular Diseases Support Group https://connect.mayoclinic.org/group/cerebrovascular-diseases/
- Caregivers: Dementia Support Group https://connect.mayoclinic.org/group/caregivers-dementia/
You might also take a look at these discussions, as the topics seems to mirror something of what your mom experienced around her gallbladder removal surgery:
- Severe pain continues after gall bladder removal ! https://connect.mayoclinic.org/discussion/severe-pain-continues-after-gall-bladder-removal/
- Severe abdominal pain pain for 8 years after gallbladder removal https://connect.mayoclinic.org/discussion/severe-abdominal-pain-pain-for-8-years-after-gallbladder-removal/
- Pain since prior to gallbladder surgery https://connect.mayoclinic.org/discussion/pain-since-prior-to-gallbladder-surgery/
I'm also sorry to hear you cannot drive. You said you have not done much research into new drugs yet. I believe you are referring to new drugs that might treat drop seizures? And I believe you are saying that at this point, you continue to not take anti-seizure medication? Are you considering the possibility of doing so at this point?