What do you wish someone had told you at the start of your journey?

I wish someone would have told me that other people including famiky had no respect nor tried to understand that a list of seizure precipitants guided and changed my life. I have been seizure free 11 years.

Thank you so much for sharing and I can totally relate. All of my daughters could not handle my experience and have gaslit me ever since the time I had my first hospitalization. It breaks my heart but just have to focus on the positive. I'm alive and can help others.

I am sorry for your grief. Gaslighting is real and very painful. I see this type of behavior a lot over anything by anyone. Judgemental self righteous etc. Shame Shame Shame

@dannoyes
Hi Dan,
What a thoughtful question you've raised in our group—thank you for sparking this important discussion.
Looking back, there are many crucial things I wish the doctors who first treated me had told me or done:
- Patient Education on Epilepsy: My initial doctor actively discouraged patients from learning about their condition. Several subsequent doctors shared this mindset and were visibly uncomfortable with my efforts to understand my epilepsy. I strongly believe that educating ourselves enables us to provide more precise information to our healthcare team, ultimately benefiting our treatment. Fortunately, my current doctor values and encourages my knowledge of epilepsy.
- Psychological and Neuropsychological Support: When I began experiencing severe side effects and emotional changes, my doctor's only advice was to "hold on" rather than referring me for professional support. I took the initiative to seek help myself and found an exceptional neuropsychologist who helped me to embrace my epilepsy rather than fight against it.
- Specialized Epilepsy Care: During my first two years of treatment, I was seen by general neurologists who followed standard protocols without considering my individual needs. This approach left me quite ill and depressed. Being referred to an epileptologist completely transformed both my treatment outcomes and quality of life. As my current doctor wisely says, "Everyone is unique."
- Connection to Epilepsy Support Groups: My diagnosis marked the beginning of a completely new chapter in my life, requiring countless adaptations. Despite wonderful support from my husband and close friends, I felt profoundly isolated. Not one of my early doctors suggested joining epilepsy support groups, where I met incredible people who truly understood me and provided invaluable support.
- Family Education and Support: Since my epilepsy was acquired during childhood rather than genetic, it was completely new to my family. When I told my parents and brothers about my diagnosis, they thought "she'll take medication and everything will be fine," often failing to respect my condition and seizure triggers. None of the initial doctors I have been to took the initiative to approach my family about the changes that would occur in my life. It was my neuropsychologist who had this wonderful initiative, making my journey significantly easier.
- Trigger Management: The concept of triggers and their management came much later in my epilepsy journey through my research and guidance from Dr. Andrews. This knowledge has been tremendously helpful. If doctors approached their patients with this information from the beginning, it would make our lives much easier.
Dan, I'm certain there are other insights I would have valued knowing earlier in my journey—I'll need to reflect further on this important question.
Thank you again for starting this discussion!
Chris (@santosha)

I wish that they had been up front with me that with the combination of the meningioma, the stroke and the brain surgery to remove the tumor that it was likely that I would develop seizures. They knew it, because I was sent home with a Keppra prescription. I dutifully took the medicine but was not told to minimize possible seizure triggers like caffeine. Sure enough, a focal seizure which generalized after 2 cups of coffee. Luckily I had that seizure at a church group meeting and awoke with a RN holding my chin up in the correct position, saying comforting things to me.

Hi @dannoyes
Another thought regarding "What do you wish someone had told you at the start of your journey" just occurred to me: keeping an epilepsy journal. Later in my epilepsy journey, Dr. Andrews advised me to maintain a daily epilepsy journal, even on days without seizures. This practice not only made tracking my seizures easier but also significantly helped me identify my triggers.
I've shared an example of my epilepsy journal entries in another discussion, which you can find here: https://connect.mayoclinic.org/comment/1314609/
Chris (@santosha)