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What could doctors do better for people with epilepsy?
Epilepsy & Seizures | Last Active: Apr 2 7:15am | Replies (71)Comment receiving replies
Thank you for starting this conversation. I had a doctor who wouldn't listen to my questions. He would patronize me when I asked about the the possible causes of my seizures and he got angry when I brought up the topic of trying to get off of medication. I wish that doctor would have had discussions with me to help me understand my condition and my options. I did change doctors and found one who does discuss things with me. When asked about figuring out the cause and treating that, he at least explained that, because my condition is mild, that he can't expend the time to do that. There are people with far worse conditions and he needs to focus on those. Trying to improve their quality of life is a higher priority. Even those it wasn't the answer I hoped for, I appreciated his candor. Each doctor is different. I hope to find one with the time to delve deeper into the cause of my epilepsy.
Replies to "Thank you for starting this conversation. I had a doctor who wouldn't listen to my questions...."
Hi @hopefullibrarian
I had a similar experience with my first doctor, the one who diagnosed my epilepsy in 2019. I'm so glad you've found a doctor who takes time to discuss your questions, worries, and fears, and who focuses on quality of life for his/her patients! I'm happy for you!
I believe that even if your condition is mild compared to others, you have the right to explore the possible causes of your epilepsy with your doctor. My first doctor also avoided this conversation, always redirecting me to just focus on treatment.
Later in my journey, I found a doctor who's a respected researcher and scholar in epilepsy. Through her, I learned what caused mine. For me, knowing the cause was valuable—it helped me understand my condition better. But as @jakedduck1 mentioned, finding a cause isn't always possible.
I hope your doctor will have time to explore this with you in future appointments!
I'm curious to hear from others in this discussion—did your doctors discuss the cause of your epilepsy when you brought it up? How important was that to you?
Chris
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@hopefullibrarian Have you had your seizures all your life or were they started later in life by an illness, head injury etc? Do you take medications? and if so do they work as you said your condition is mild. What is a mild form of Epilepsy, I have been wondering that myself. I have been struggling with approximately 2 seizures a month for 20 years from a TBI but I know some people have them daily. I have not joined any Epilepsy sites like this before. This is my first to share my problem.