Finding the Right Doctor

I was relieved to finally have health insurance after working three months with my new company and couldn’t make an appointment with a local neurologist quick enough. I had moved about 1.5 hours away from the physician who diagnosed me and wanted a local doctor. After many headaches in getting my medical records transferred to the new neurologist, I was hopeful he could assist in controlling the attacks. I was wrong. I visited him three times over the following year. Each time he looked at me like I was crazy while saying, “You sure are having a lot of attacks and your medicine is getting very powerful.” This, I knew. What I didn’t know and what I was paying him for was to tell me how to control the attacks. I finally realized he wasn’t the doctor for me and switched doctors yet again.




I was very impressed with my initial visit with Dr. Delgado. He took the time to explain in detail what type of epilepsy I had and what had caused the problem. He also gave me an informative book titled 100 Questions and Answers about Epilepsy by Anuradha Singh, MD. As the title states, it answered many of my questions. He spoke very confidently that he could control my seizures as there was no reason for me to have so many attacks. YES! I was thrilled! I knew after our first meeting that I had found MY neurologist. He cared about my well-being and was determined to control my attacks. He immediately changed my medication and asked to see me in three months.



The new medication seemed to help control the attacks. I was so pleased and excited. At my three month follow-up with Dr. Delgado I shared the improvements. He was thrilled and said he would now only need to see me in six months. If everything continued to improve, he would put me on yearly visits. My excitement increased as it looked as if I had my life back. I was wrong. The following six months were horrible. The seizures returned to their previous frequency and were stronger than before. It was a LONG six months to my next visit. By the time the appointment came around, I had decided to ask Dr. Delgado about surgical options. I had heard about the Vagus Nerve Stimulator (VNS) and was interested in its possibility of helping. From my understanding, the VNS is a device similar to a heart pacemaker but the VNS is connected to the vagus nerve in the neck. It sends mild pulses of electrical energy to the brain by the vagus nerve to control seizures. At this point, I was open to any and all options for further help. I would have considered brain surgery but my previous two doctors told me brain surgery was not an option due to the size of my abnormality. For this reason I thought the VNS was my only hope of a surgical cure.



It was May 2009 when my sixth month follow-up finally with Dr. Deglado arrived. He confirmed what I already knew; the medication was not working. However, what he suggested next shocked me. Without my mentioning exploring the Vagus Nerve Stimulator, he recommended a full epilepsy evaluation as a potential candidate for brain surgery. Since my two previous physicians had ruled out brain surgery as an option, I was shocked and scared. He referred me to University of South Florida Health to see Dr. Benbadis, an epilepsy specialist called an epileptologist. The waiting game of seeing Dr. Benbadis was almost torture as I wanted answers. With the possibility of brain surgery, finding out more could not come soon enough. Little did I know of the twists and turns my life was about to take.

I have epilepsy. Now what?

My initial reaction to the diagnosis was “Oh, well. No big deal. I’ll take medication the rest of my life and will be fine.” I joked among friends that I was now a lifetime drug addict. It didn’t take long for the full reality of my diagnosis to set in. Within a few weeks of beginning medication, I knew the medicine wasn’t working as the seizures continued and seemed to be getting worse. My professional life was forever changed as I realized my seizures would not allow me to work in the entertainment industry, something I dreamed of doing for over a decade. The stress and long hours required of an event manager simply did not match my “must haves” to control my seizures as stress and lack of sleep are major causes of seizures. At this point, the harassment of my co-workers was hitting a peak. I was working for a major entertainment company and my managers seemed to have little heart, compassion or understanding to what my day-to-day life was like. They got their jabs in where they could.  Their comments hurt and I took the appropriate steps within the human resource department. 

It was not an easy decision but I knew I had to make a career change for my survival. Since I had worked towards being part of the entertainment industry since I was 13, including taking out huge student loans to attend a well-known and recognized music business program in Nashville, Tennessee, the change did not come easily. I felt like a part of me had died. I grieved for my crushed dreams while trying to figure out a new path. Unhealthy thoughts crossed my mind as I wondered how many anti-epileptic pills I would need to swallow to end it all. By this point I had moved back in with my parents to transition jobs and living arrangements. This only added to my stress, causing more seizures, as I looked for a new place to live and job.



Before dreaming of working in the entertainment industry, I thought teaching would be my career. Many in my family work in education so the desire to teach seemed like an almost inherent skill. By this time it was the summer of 2007 so I went to work looking for a position before the school year began. I was blessed with quickly finding a job and was able to transition from my old job as a convention assistant to teacher with little delay.



The new job and schedule was great. However, paying full price for medication due to having no insurance for the initial three months of employment was financially and emotionally draining since the seizures continued. Even so, I figured some medication was better than none and continued to pay over $300 a month for my medication. I was eager to find a new local doctor who would hopefully adjust my medicine to be more effective in controlling my attacks.  That turned out to be a more difficult task than originally thought.