John T.

Writing is a wonderful way to express feelings and share important experiences. We invite you to read John T.'s description of his 30+ experiences with epilepsy.

MY EPILEPSY RECOVERY STORY: JOHN T. 4/5/2011

It’s been over thirty years since that summer in 1979 when I fell ill with meningitis. Contracted in a New York hospital where I was working to earn money for my college education, the illness put me at death’s door for six weeks with dangerously high fevers. Though I recovered and was able to get back to a normal life as a junior at St. Bonaventure University, normal lasted only until November of that year.

Home from college and sitting with my large Italian family around the Thanksgiving dinner table, I suffered my first seizure.
You can imagine the excitement!! I didn’t know it at the time, but it was the first of a series of epileptic seizures that would grow increasingly more frequent over the next three decades to the point where they nearly killed me. For most of my adult life medication kept me seizure free however periodically as an adult I would experience “breakthrough” seizures and would either have my medication dosages increased or my medication changed. In total I think I have tried about 8 or 9 different anti-seizure medications. In the fall of 2008 however, something drastically changed, while driving back to my Winchester, Va., home from my job in Chantilly, Virginia I suffered a seizure that lasted 45 minutes. I lost control of my car hitting two other cars, totaling my own.

While no one was injured, I knew something was very wrong and my life had to change. I immediately went and saw my then current Neurologist. We tried some new medications however they only affected my personality and had no affect on my active seizure rate which had drastically increased to 6-8 per day, with medication not having any effect on slowing down my seizures. My doctor suggested I consider seeing a Seizure Specialist, and consider “Seizure Surgery”. Friends suggested I seek treatment answers through the University of Virginia Health System, but I lived in Winchester and for 16 years. I remember saying to a few of them, “Why would I do that?” “I want to be home, near my family. We’ve got a great hospital here. It’s like a gold mine in our backyard.”

Working with my Neurologist and Neuro-surgeon I underwent months of careful evaluation. Doctors ultimately found me to be a good candidate for surgery that was not available 30 years ago. In June 2009, my surgeon removed a baseball chunk of tissue from the right side of brain. Tissue analysis revealed a walnut-sized piece that was badly scarred, most likely from the ferocious fevers caused by the meningitis attack in 1979 and believed to be the focal point of my seizures. For years the scarred tissue literally had been seizing control of function in my brain, triggering random electrical charges rather than allowing a normal discharge of neural energy.

As for my family, following that Thanksgiving Day attack, I was placed on Dilantin which initially controlled my symptoms. I graduated from St. Bonaventure in 1981 and married two years later. My wife Shirlee didn’t see a seizure for probably the first six years of our marriage. But then the seizures started again and began coming more frequently. During a typical seizure, I would not lose consciousness, but would become disoriented and not be able to grasp where I was. I lost muscular control, trembled and shook. The seizures would last from four to six minutes and when they cleared my energy would be almost completely sapped.

Over the years, doctors increased the Dilantin,, then combined it with other drugs. Each time, the seizures would cease for a time, but they would always return. I went from having four a month to as many as six per day. Fortunately, the company I work for, a distributor of network products in Chantilly, was completely supportive of me—even when I would have seizures at work, not everyone is as lucky as I know I am. Even so, I recall, the drugs and the lost energy and the altered personality!!

Because my epilepsy was concentrated on the right side of my brain and hadn’t appeared to jump to the left side, doctors felt surgery could help me. They were right. The day after my surgery, I stopped having seizures. I cannot tell you what it is like after 30 years to wake up and not have seizures. It’s like waking from a dream.

After the surgery, doctors told him me you know, you faced a major, life changing experience. “We can fix you with meds and surgery and stitches,” I remember being told, “but we recommend a treatment for you as whole person.” At their suggestion, I began seeing a psychologist in Winchester and I was glad I did as I needed to fix some personality traits about me also. I remember my Neurologist saying to me, “John , you know, you are wound pretty tight, you are like a quadruple A personality. If we can get you to a double A, I’d be happy.” There has definitely been an adjustment in my life. I feel different. I was trapped for 30 years in my body and all of a sudden I’m not trapped. I needed help adjusting to those new feelings.”

My family has been very supportive. My wife now has a new husband and my two sons have a new Dad. I have a tremendous amount of energy that I didn’t have before. I used to go to bed at 9:30. Now I stay up until 1 a.m. and get up at 4:30 and ask ‘Where’s the next project?’” I walk 10 miles / 3 times a week…. I have lost 75 lbs, I work less, and feel great ,
My concentration has improved vastly. I was once an avid reader, but I had stopped reading for pleasure because I found my comprehension was poor …seizures took that away. Now I read the way I once did, for enjoyment, and have no trouble comprehending.

I am so grateful about my recovery that I work for the National Epilepsy Foundation of Virginia and started a support group in the Winchester area. I even work with Drs. Lyons and Selznick in coaching epilepsy patients. Winchester Medical Center has invited me to speak to patients about my experiences. Once after a talk, a 24-year-old man in the audience approached me and told me he also had suffered meningitis and now battled seizures.

I gave him my name and number and told him to call me at any time. I told him I waited 30 years for help, mostly because the technology didn’t exist. Don’t wait 30 years, I told him. Get the help you need now. You can reach me at johntilelli@aol.com.

AND THE BEST OF ALL THIS JUNE I WILL BE 2 YEARS SEIZURE FREE!!!!!!