When I Was Forced to Seek Out a New Doctor -- Several Times

A few years ago, my husband and I moved a few hours away from my hometown and my favorite neurologist and I was forced to seek out a new one. The first one I found continued to keep me on the medication that cost $800 with no generic, and did not offer me any samples or means of assistance. Since the medication was hard to obtain because of the price, one month I could not afford it and I wrecked my car into a tree because I had a seizure while driving. Because of the lack of support and the attitude I got from that doctor, I switched specialists to the medical college in my area.

The neurologist there put me on a medication I was on as a child, Keppra, and continued to keep me on Zonegran, a medication I had been on since I was 16. I began to have seizures in my sleep (something that had never happened before) and my husband began to write down the dates of my seizures, realizing they were around my menstrual cycle. My doctor at the medical college began to increase my medications and put me on progesterone to help with my newly diagnosed catamenial epilepsy, which yielded no positive results.

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My husband and I grew tired of buying unnecessary prescriptions and ones that gave me seizures in my sleep. We made an appointment with a team of neurologists at the local hospital. When I met my new and current neurologist, he was confused about why my past ones chose the methods they did. He told me about medications I had never heard of before and diazepam rectal injections for emergencies. As someone who had epilepsy for 20 years, this was a new medication option for me and I was completely surprised.

This new doctor also gave me two months worth of samples of my $800 medication and requested that I have an EEG and bloodwork done. The amount of time my current neurologist spent with me on my first visit was equal to three of my previous visits with any of my other doctors.

While it was difficult to find a doctor with the right bedside manner and the willingness to help instead of pushing me out as soon as I came in, I didn’t give up until I found the proper one who could truly help me. The journey of getting a caring doctor is part of being a disabled person who battles epilepsy. It was hard, but finding the courage to push through and having a good support system behind me made it easier and the memories better.