What could doctors do better for people with epilepsy?

appreciate the like too. have a blessed day.

I too have TLE. I've had the same neurologist for over 20 years and she is great. I feel listened to and that she is genuinely concerned when things go wrong. The one thing that I would say is that emotional/behavioral aspects of Epilepsy aren't really addressed. In fact I have had epilepsy from a head injury when I was 15. I'm 63 now and just learned that epilepsy has an impact on that. I had neuropsych testing done recently. I have have chronic depression, attention issues and an explosive temper. The psychologist said he believes that the symptoms are common with people with epilepsy. I had no idea that was a thing - Now I'm thinking how did I not put the 2 together?!

Hi @ldlauwers !
Thank you for you so much for your sharing of experiences.
What a blessing to have a doctor for over 20 years who genuinely listens to you and is concerned when things go wrong. It took me a good while to find such a doctor, but I persisted and thankfully found mine too 🙏.
I agree with you—not many doctors address the emotional and behavioral aspects of epilepsy. Epilepsy is so much more than just treating seizures! Since my accident as a kid (which caused my epilepsy), I've been known as an anxious person. It took me decades to understand why: it's the epilepsy!
How has your doctor been helping you with your depression, attention issues, and temper?
Chris

Good Morning Everyone!
After @ldlauwers post, I'm curious to know: how many of you feel your epilepsy is being treated holistically—not just addressing the seizures, but also the emotional, behavioral, and quality-of-life aspects?
I'd really love to hear your experiences. Thank you!
Chris

@santosha I have been looking for a therapist that works with epilepsy patients and had a really hard time finding one. I am meeting with one this week from University of Michigan - I really help it goes well. I have been in therapy on and off since I was a teenager - my behavior was chalked up to being a teenager. But it has carried over into my adult life as well. The psychiatrist who did the neurotesting recommended I find the therapist I mentioned and a support group. I kind of dismissed the support group part of it and found you by accident. I am so glad I did - it really is helpful to hear from others struggling with epilepsy.

@ldlauwers Good afternoon!
Working with a neuropsychologist would be ideal. I've been seeing one since 2019 and it's made such a difference—I'd absolutely recommend mine if we were in the same area! I'm in São Paulo, Brazil, though.
My doctor at that time recommended her to me, and she also conducted my neuropsychological assessment. Has your neurologist mentioned anyone he or she might recommend? That's often a great starting point.
The Epilepsy Foundation Helpline might also be able to point you toward resources in your area: https://www.epilepsy.com/helpline
Would you mind sharing where you're located? That way, other community members might be able to suggest specific psychologists or neuropsychologists in your region.
Chris

I did get the neuropsychological testing but they only did testing there. I am not aware of any that do therapy in my area (Ann Arbor MI). I did ask my neurologist about therapists and she had no references. I called all of the therapists in the area that were listed on the Michigan Epilepsy Foundations website but no luck. I was looking for therapists though - I will look to see if I can find a Neuropsychologist in my area that does therapy. I do have an appointment this week with a therapist from U of MI that works with epileptic patients. Fingers crossed! Thank you for your suggestion of a neuropsychologist 😉

@ldlauwers Hi!
I believe that a neuropsychologist who also provides therapy will have a better understanding of what you're going through.
I hope your appointment with the therapist this week goes well! I'd love to hear how it goes.
Chris

Is your therapist appointment at the University of Michigan COMPREHENSIVE EPILEPSY Center?
I'm curious how your Epilepsy makes you depressed?
I hope all works out with the therapist and your depression is soon history.
Take care,
Jake

@jakedduck1 My neurologist is there - I don't think they offer therapy in that dept. As for the depression - The area of my brain that is damaged effects mood. Depression, mood swings and irritability - basically problems with emotional regulation. I sound like I'd be a lot of fun at a party, eh? Seriously though I never knew all of that could be due to epilepsy - I can't believe I never made a connection.