@belinda5000
Hi Belinda,
I understand your feelings well. When I was first diagnosed and put on my first AED. it gave me severe insomnia. At that time, I was still working and had an active professional life, and my doctor simply told me to push through it and continue with my life. But at a certain point, I said NO — I told him I could no longer endure that and asked him to change my medication. He pushed back, which led me to seek a second and then a third opinion, and I changed doctors.
You've been managing your epilepsy this since 1974 — that's over 50 years of learning your own patterns, and no one knows your body better than you do. I think that's something worth recognizing: we are, in many ways, the best advocates for our own epilepsy journey. Doctors bring expertise, but we bring the lived experience of what each medication actually does to us.
Are you satisfied with your current doctor? And for coming off Topamax, has your doctor given you a specific tapering schedule?
Chris