What could doctors do better for people with epilepsy?

@ldlauwers
I bet you'd be the life of the party.
There is a joke thread here in case you don't know,
https://connect.mayoclinic.org/discussion/how-about-a-laugh-hopefully/
Have you ever had or considered Cognitive Behavioral Therapy? I know it's helped others with depression but of course everyone's situation is different.
Blessings,
Jake

@santosha
I love my quality of life. No more seizures after so many decades of them being uncontrolled. I have been fortunate to not be/been plagued with any depression, or anxiety issues. Although I've totally accepted all phases of my epilepsy 58 years ago and never let the illness control my life, I never expected my life would become so idyllic.
I'd like to thank my family, friends, doctors for being supportive and accepting. They made even the most difficult part of my journey so much easier.
Take care,
Jake

@santosha

My neurologist treats the epilepsy efficiently and listened to me when I suggested a change in my AED. It’s his job and he does it well.

I have the standard life problems like everyone else, but as long as the treatments for epilepsy are successful (no seizures) , and my family accepting of a possible seizure, epilepsy does not affect or cause my current issues, except of course my differences of opinion with the pharmacy where I buy the AED. 😀

@jakedduck1
Hi Jake!
What a beautiful and inspiring message!
You touch on something so important: the role of family and friends, and a supportive medical team in making the journey more bearable. That human connection is itself a form of holistic care.
Thank you for giving hope to those who are still in the more difficult chapters of their journey. 🙏
Chris

Thank you for sharing your experiences, @methel !
It sounds like you have built a true partnership with your neurologist — and that is such a gift. Having a doctor who genuinely listens, treats you as a whole person, values patient-generated knowledge, and welcomes your questions rather than being bothered by them makes such a difference in how we navigate our condition.
Curious to know, what do you value the most in your neurologist?
Chris

@santosha

To answer your question: yes, my neurologist took my suggestion on an adjustment in medication and my seizures were controlled. That’s most important. But also, his support staff is phenomenal. In person, they are knowledgeable, supportive and helpful. On the phone, they know the next steps.

In my experience too many times there’s a disconnect between the person at the front desk in the doctor’s office and the doctor. The receptionist radiates ‘ this is a boring job. Isn’t it time to go home yet?’ No matter how good the news or the doctor, the visit is more stressful.

Good Morning @methel
Thank you for sharing this. What a great example of true partnership with your neurologist! You also touched on something so important: the support staff.
That disconnect you describe at the front desk is unfortunately all too familiar. I've experienced that myself with my own neurologist's front desk.
I'd love to hear from others in our community: has a support team made your medical experience significantly better or harder?
Chris

Hi @ldlauwers
I hope your appointment with the therapist who works with epilepsy patients went well.
I'm curious to hear how your search for a therapist has evolved since last February.
Chris

I have not had any luck. I am having problems finding someone who takes medicare and accepting new patients. I am still looking though! Thank you for checking in < 3

Hi @ldlauwers
I am so sorry to hear that!
It might also be worth considering seeing a psychiatrist or neuropsychiatrist via video calls, which would expand your range of options considerably. In the post-COVID world, so much can be done remotely. My own neuropsychologist is also based in São Paulo, and almost all of my sessions with her are done via video call — which makes life much easier, as I no longer drive and the traffic here is terrible!
As suggested before, have you tried getting in touch with the Epilepsy Foundation Helpline? They may be able to help with this search.
I thank everyone who can help @ldlauwers with suggestions of a psychiatrist or neuropsychiatrist specializing in epilepsy in the US.
Chris