What could doctors do better for people with epilepsy?

@santosha
I agree with you completely Chris.
I think doctors could respect patients opinions more. My last Neuro was very good at listening to my opinions but he passed away. One of my doctors if I asked a question would say, are you a doctor? I generally replied no but I'm the one with epilepsy and I know a lot more about how I feel and what I'm going through than you do. I believe they could also explain more thoroughly to patients why they're giving you a specific medication.
Thank you Chris for that question, the responses are going to be interesting.
Take care,
Jake

@jakedduck1

I have almost nothing but praise for my neurologist. When I suggested a change in my meds which was the suggestion of my phlebotomist, he agreed to try it, and it worked.

The only thing that could be a problem for some is that it’s a major teaching institution and so in addition to the doctor and patient there often are a resident and 2 more young folks in white coats (med students, interns?) visibly trying to remember what I said about my symptoms during the visit.

My last visit one of those young white coats was told to check the strength in my arms and legs. As she did, I glanced at the professor’s (my neurologist) face. He was watching her technique, not my reactions. Which is ok. I know that I recovered very well from the meningioma surgery.

I wish I knew more about seizures and medications 20yrs ago as I would never have started on the meds after a TBI caused by my partner here in Australia. The seizures started at 2 a year so I was started on Epilim. I may have started on a ketogenic diet first to see if that helped before trying any medication. I stopped the Epilim after about 18 months because of the s/e. I then realised the seizures were now monthly, about 24 a year so I was started back on various meds over about 8 years which did not help, or made them worse. I stopped the meds in 2012 but over the last few years they have gone from CPS to Drop seizures. I fractured my spine the end of 2024, & have had another few falls so I am now looking up meds yet again to try to stop Atonic or Drop seizures. I tried the keto diet for 1 year in 2023 but that did not stop the seizures. I have read that Carnivore has helped some people after many years of seizures so I am wondering about that.

They could mention that cognitive changes temporary or permanent . I was started on Dilantin which resulted in a 65 pound weight gain and cognitive effects— I could hardly perform on my job. I asked the neurologist to change the medicine and I lost the weight and my cognition was cleared.

@santosha Thank you for this. I really resonate with the call for truly individualized care.

For a long time, my care felt “protocol-first” rather than “person-first.” I know guidelines matter, but I often wished my care team would spend more time on my actual day-to-day pattern, how I respond to specific meds, and what quality of life looks like for me beyond seizure counts. The hardest part wasn’t just symptoms, it was feeling like I had to prove my lived experience was clinically relevant.

What helped most was when a clinician treated me like a partner: clear reasoning behind decisions, willingness to adjust based on my feedback, and practical support for the real-life impact (driving limits, safety planning, work and relationships).

Curious what “individualized care” has looked like when it’s gone well for others here. As some of you might know, I've pivoted my life to try to communicate to doctors that we are sovereigns in our healthcare, not just subjects. Sadly, it feels that the providers don't really know us and the reality of the challenges we face and the impact it has on our lives. We are often just looking for empathy, in addition to excellent care.

@jakedduck1
Hi Jake,
Thank you so much for sharing your valuable experience.
I totally agree with you – many doctors fail to listen to their patients more and respect their opinions. We're the ones who know best how we're feeling and what we're experiencing in our epilepsy journey! 👍
When you wrote "One of my doctors, if I asked a question, would say 'are you a doctor?'" – it reminded me of my first doctor, who diagnosed my epilepsy and started treating me. He was so uncomfortable with me studying epilepsy and asking questions that he eventually asked me to stop researching. I didn't, and after that comment, I decided to change doctors. Thankfully, my current doctor values my knowledge of epilepsy, which helps me better express my experiences and symptoms. This has been invaluable for treatment adjustments.
A doctor explaining to their patients why they're prescribing treatment changes and new drugs is another thing I've missed much in my epilepsy treatment journey. Great point, thank you!
Is there anything else you feel has been missing or that you'd like to see improved in your epilepsy treatment?
Chris

Hi @methel
Thank you for you so much for your sharing of experiences.
What a blessing to have found a doctor who genuinely listens and respects your input. I'm really happy for you!
It's wonderful that when a resident was involved in your care, your doctor was there with him or her. Unfortunately, this doesn't always happen, as I've experienced myself.
Beyond listening to you and respecting your opinions, what other things make your doctor so special to you?
Chris

Partly, it’s the institution itself. Doctors’ offices are adjacent to the hospital and everyone at the huge teaching hospital is helpful. Stand and look lost, and someone maybe a doctor, an RN, or the janitor will stop and ask if you need help. So you’re in a good mood before you get to neurology department. And when you get to the department, the check-in and copay collection people are uniformly pleasant and efficient. And after that, my doctor listens to me, accepted a medicine suggestion, and has been remarkably accurate in predicting the outcome of my treatments. The only negative is that it’s too difficult for me to drive myself and so my son must take a day off work to get me there.

@merrychristmas
What medication did they change you to?
Take care,
Jake

@jakedduck1 lamotrigine