What could doctors do better for people with epilepsy?

Hi @laura1961
As already expressed in another discussion, I'm so sorry you've gone through this.
If I understand correctly, you're highlighting how many doctors overlook or dismiss the side effects of antiepileptic drugs—is that right?
You've touched on something really important here. I've experienced this too in my own journey. With one medication, I developed severe insomnia. After more than a month of barely sleeping, I brought it up, and my doctor's response was "stick it out." It took three months of severe insomnia and much suffering before he finally agreed to change the medication.
What I've noticed is that some doctors become laser-focused on keeping patients seizure-free, no matter what the cost. Everything else—quality of life, mental health, daily functioning—takes a back seat. Did you experience something similar?
Chris

@santosha
I agree the side effect issue @laura1961 mentioned is important. The problem is, sometimes you have to make a choice between seizures or side effects. 60 years later I still have tiredness, ataxia, memory and aphasia although much better now. My doctor is concerned that I often fall and wants to stop one of my meds, but I told him if it isn't broken, don't fix it. I'd rather fall than possibly have seizures again. Been there done that and I don't wanna repeat it.
Take care,
Jake

@methel Thanks for sharing. I went to a teaching hospital in Florida (before Mayo) and it was a somewhat unsettling experience simply because my situation is a little unusual because besides my epilepsy I also have something called Central Sensitization Syndrome so there were more questions about me than with me. However, I felt that if I could help someone else learn it might help a future patient. Thanks for sharing, and glad things went well for you.

@santosha
What angers me is so many doctors refuse to explain the possibilities of seizures that are life-threatening like Status Epilepticus and S.U.D.E.P. (Sudden Unexplained Death in Epilepsy.)
I saw a doctor interviewed on tv or the internet, I can't remember. But he said he refused to tell patients of those conditions because they would worry and couldn't handle it. Like the parents could handle the death of their family member better? Few if any of the people I knew or met on forums were never told of ways to reduce the risk of death.
Perhaps there should be pamphlets in doctors' offices like there were decades ago explaining the dangers of day-to-day living like not taking baths due to the possibly of drowning, the dangers of showers, , or cooking on rear burners of the stove, cook in microwaves if possible. People have drowned in bathtubs, showers, even while washing dishes. Dangers are everywhere. Newly diagnosed patients should be educated.
Take care,
Jake

@jakedduck1 I think that is because so many general PCP's (and some N.P.'s that I've met) do not know Neurology... They are not a Neurologist-- which takes a greater/extended medical education than general M.D.'s
It is why I am so thankful for Mayo Clinic Neurology.

One Neurologist that I saw 18 years ago wanted me to come into his office for questions and testing. He instructed me to "stop taking any of your meds for the next xxx days. Then come see me and I'll talk with you, draw some blood." I cannot even remember if he said he'd scheduled me for MRI or something else.
My point is: he almost got me & my toddler killed, while I was driving. I did not know how quickly going off all anti-seizure meds would physically destroy someone.
That ignorant Neurologist was destructive.
Last year, there was a healthcare plan which tried to deny me from using the same generic brand of anti-consultant's that I take. Saying that they would approve me to take only their choices. I refused!
And I explained why not, to their CSR: I am NOT going to take any chance of starting seizures again.
May we all have a better 2026.

@jakedduck1 I am sorry for your health issues. I am grateful for your honesty.

@dannoyes
Hi Dan,
Thank you so much for your valuable contribution to this discussion!
You expressed beautifully what I have tried to articulate about individualized care when you wrote "For a long time, my care felt protocol-first rather than person-first.
I also loved when you wrote that your doctor treated you as a partner. This can really be a game-changer in the epilepsy treatment, in my opinion.
Several times, you mentioned your appreciation for the treatment you have been receiving at Mayo Clinic. Would you mind sharing what makes your treatment there so special to you?
Chris

@jakedduck1
Hi Jake,
I really respect your perspective, especially with so many years of living with epilepsy—you know what works for you and what you can manage.
There was a time when medications kept me 100% seizure-free, but left me very debilitated. That trade-off wasn't sustainable for me.
So based on that experience, I've found it important that the side effects of AEDs don't cause me more harm than the seizures themselves, something my current doctor agrees with.
I think what both our experiences highlight is how deeply personal these treatment decisions are. There's no one-size-fits-all answer, and what matters is finding what allows each of us to live as fully as possible given our own circumstances and priorities.
Chris

@jakedduck1
Hi Jake,
I agree with you—SUDEP and Status Epilepticus are conditions doctors should discuss more openly with patients. I've learned about both conditions through my own research during my first year of treatment.
There are ways to present this information without causing undue anxiety. Withholding information doesn't protect anyone—it just avoids difficult conversations that doctors should be having.
I'm curious to know what other members' experiences have been in this respect. Were you informed about these conditions by your doctors, or did you discover them on your own?
Chris