What could doctors do better for people with epilepsy?

Posted by Chris Gautier, Volunteer Mentor @santosha, Jan 10 7:15am

First, let me wish you all a 2026 abundant in good health, well-being, resilience when needed, joy, peace and much love.
After reading many posts at the end of 2025 and into this new year, this question has been on my mind. I believe we all have valuable experiences to share on this topic.
For me, one of the things doctors could do more is provide truly individualized care. For many years, I was treated according to a standard protocol for temporal lobe epilepsy, without enough consideration for my individual responses and constitutional type. Finding a doctor who sees each patient as truly unique changed everything for me.
What has your experience been? What do you wish your doctors did more of, or differently? I'd love to hear your perspectives.

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Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Chris Gautier, Volunteer Mentor | @santosha | Jan 28 5:34am

In reply to @randallshields56 "@laura1961 Truth is upper echelon had to many complaints about his beside manner and attitude. He..." + (show)

@randallshields56
Hi Randall!
Thank you so much for sharing this experience.
I also really appreciate when my doctor tells me with sincerity and kindness what I'm facing. Thankfully, I now have a doctor who treats me as a partner and is patient about explaining my exam results, answering my questions, and addressing my fears. But it hasn't always been like that with other doctors I've encountered on my epilepsy journey. The effort to find a doctor who truly treats me as an individual was more than worth it!
I've noticed something interesting when talking with fellow epilepsy patients— the majority know what kind of seizures they have, but not always what type of epilepsy they've been diagnosed with. I wonder if doctors aren't explaining this distinction between seizure and epilepsy type, or if the epilepsy diagnosis simply hasn't been shared?
Chris

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Chris Gautier, Volunteer Mentor | @santosha | Jan 28 5:51am

In reply to @santosha "@randallshields56 Hi Randall! Thank you so much for sharing this experience. I also really appreciate when..." + (show)

Hi Everyone,
Following up on my last post: I value a doctor who's honest with me and invests time in making sure I truly understand my situation.
I'm curious about your experience—do you prefer just the main points from your doctor, or detailed explanations and complete openness?
Chris

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Randy Shields | @randallshields56 | Jan 28 9:03am

In reply to @santosha "@randallshields56 Hi Randall! Thank you so much for sharing this experience. I also really appreciate when..." + (show)

@santosha well i will get to find out on the third, i will ask that question to also share. my MRI came back showing i have a Cyst and it has been reeking havoc for over a week found out this morning i lost a day- slept it away. many other symptoms, headaches, following direction and more are off the scale, dizzy and balance included. i will let everyone know as soon as i can- PS the doctor they let go this was the other one they kept, didn't rock the boat.

Randy Shields | @randallshields56 | Jan 28 9:07am

In reply to @santosha "Hi Everyone, Following up on my last post: I value a doctor who's honest with me..." + (show)

@santosha detailed and open for suggestions. if your going to get news get it all.
i can see if some it might be too much to take in and possibly cause a seizure but a smart doctor can work around that overload.

Randy Shields | @randallshields56 | Jan 28 11:17am

In reply to @santosha "Hi Everyone, Following up on my last post: I value a doctor who's honest with me..." + (show)

@santosha -epilepsy diagnosis simply hasn't been shared? Lets just say in my case that too much information to fast starts my brain to start backing off on retaining information, this could also be a reason for only sharing to much, not just the overload but retention of what was covered. with me slow and direct so that i retain as much as i can to go on with the visit. I've noticed with this cyst that short term memory is shorter on retention times , It BITES

Randy Shields | @randallshields56 | Jan 28 11:21am

In reply to @randallshields56 "@santosha well i will get to find out on the third, i will ask that question..." + (show)

Thank you.

Randy Shields | @randallshields56 | Jan 28 3:01pm

In reply to @randallshields56 "@santosha detailed and open for suggestions. if your going to get news get it all. i..." + (show)

@randallshields56
yes a smart doctor agree to that completely

Randy Shields | @randallshields56 | Jan 28 3:18pm

In reply to @randallshields56 "@santosha detailed and open for suggestions. if your going to get news get it all. i..." + (show)

@randallshields56
was handling the overload pretty good and improving loke crazy speeds and just another hurtle to go over hope this one is easier than the last. wishing you a great rest of the day ,and many ore to come.

Randy Shields | @randallshields56 | Jan 28 3:21pm

In reply to @randallshields56 "@santosha -epilepsy diagnosis simply hasn't been shared? Lets just say in my case that too much..." + (show)

Thank you for the hig, have a blessed day.

Randy Shields | @randallshields56 | Jan 28 3:23pm

In reply to @randallshields56 "@santosha detailed and open for suggestions. if your going to get news get it all. i..." + (show)

Thank you for your helpful.

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