Fort Myers woman shares story about epilepsy
Special to the BEACH OBSERVER
When I was 19 years old, life was going well I was active, healthy and a sophomore in college at University of South Florida in Fort Myers. Then, one day, my left arm and leg started twitching and moving uncontrollably.
A doctor told me that I had “ticks” and it was just something I would have to learn to live with. This was easier said than done. Though I tried for a time to continue with my studies, eventually my professors started complaining that my uncontrolled limb movements were a disturbance to the other students in class, and I eventually withdrew. I could no longer drive, and had to move back in with my parents.
I started to see a long list of doctors – from infectious disease specialists to rheumatologists but over the course of eight years, none had a conclusive diagnosis. I tried to go on with life, working in a local factory during the day and returning to finish school at night. I was able to graduate with honors and a degree in social work. And, I became a mother, to my daughter, Cynthia.
Cynthia was born a special needs child. I have been extremely involved and proactive in her care and development, and, likewise, never gave up my quest to find out what the cause of my own “medical mystery” was.
Eventually, I traveled to the Cleveland Clinic where a neurologist was able to tell me that my “ticks” were the result of epilepsy. It was the first time I heard this diagnosis, and I knew almost nothing about the condition. Yet I was relieved to have some kind of “answer” for what I’d been experiencing over the last eight years.
Epilepsy is the third leading neurological disorder, affecting more than three million Americans. The condition is characterized by a disturbance in the electrical activity of the brain, known as a seizure. Seizures are defined as sudden attacks or convulsions caused by involuntary bursts of electrical activity in the brain, and may cause various noticeable symptoms including uncontrolled body movements.
I began taking medications, but, over time, would always start to have seizures again. My doctor changed my medication combinations and increased the dosages, but the side effects of the drugs were significant I often felt lethargic, and one drug caused me to put on nearly 60 pounds. I am among the 30 percent of people with epilepsy who have pharmacoresistant epilepsy, meaning my seizures are not controlled by the drugs or the side effects of the medications are intolerable.
In early 2009, I saw a brochure about Vagus Nerve Stimulation Therapy. Often referred to as a pacemaker for the brain, VNS Therapy consists of a of a small generator that is implanted under the skin in the left chest and sends mild impulses to the brain via the vagus nerve in the neck. The device also comes with a magnet that, when swiped over the implant, is able to decrease or stop a seizure instantly. My current neurologist, Dr. Jose Colon at Lee Memorial Hospital, decided I was a candidate for VNS Therapy, and I wanted to move forward with the treatment option right away. I was implanted with VNS Therapy in June 2010.
Since then, I have had only one return of seizures, this past November, which went away after my doctor adjusted my VNS Therapy settings. This is a dramatic change from the three-to-four seizures I used to experience every few weeks. With my doctor’s guidance, I’ve also been able to discontinue one of the three medications I was taking and hope, over time, to reduce them even further. The magnet provides an added reassurance to my family and me that if I do have a seizure, I may be able to stop it or decrease its length/severity.
From my experience both as an epilepsy patient and as the parent of a special needs child, I strongly believe in being empowered in one’s own medical care. I hope by sharing my story, others can learn more about epilepsy and about VNS Therapy as one available treatment option. To learn more about VNS Therapy, visit:us.cyberonics.com/en/vns-therapy-for-epilepsy/patients-and-families or contact Dr. Colon’s office: www.leememorial.org/pediatricsubspecialists/physicians/colonJ.asp