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Thank you for a wonderful inservice program today. The Norwalk school nurses could not speak more highly of your presentation. We all learned so much... Grace - School Nurse Supervisor
Faces of Epilepsy
My name is Tracy Arner and this is my experience with Epilepsy. I was told that I had Epilepsy at the age of 7 years old. One afternoon I was hit over the head with a toy Tonka truck. I went to bed that night with a headache and woke up in the hospital surrounded by doctors. Apparently I had suffered a severe grand-mal seizure and had stopped breathing numerous times. The doctors said I probably had this condition my since birth. All I knew at that point was I was having the same “dream“ a lot and was having funny feelings. They said there was no brain damage.
I was in second grade at this point. The schools told my mom I was slow, didn’t follow directions, I had trouble concentrating and was frequently off task. I went to school with the 24hour EEG that showed I was having seizures every 15 -30 minutes. I was starting to hate school and was constantly picked on. In 10th grade I had a grand-mal seizure and I left in an ambulance. I had to change schools to graduate.
I began major research on the body and the brain with regards to epilepsy after a miscarriage at 20yrs old. I believe the meds caused the miscarriage. At 23 yrs old I became pregnant and I was determined to do whatever was needed to ensure a healthy child. I quit smoking, went off my meds and ate healthy which resulted in a perfectly healthy son.
At 23yrs old I had a grand-mal seizure in the morning at work. The young workers put me in an office. When they checked on me later, I had turned blue from not breathing and they called an ambulance. I had to learn my job over again. This information wasn’t available to me until 3 yrs later when nothing could be done about it. I continued complex-partial seizures a few times per week with no memory of these events. My co-workers became used to it and stopped telling me about the frequency of the seizures. At 33-35yrs I had 3 car accidents. The last accident was with my son in the car which resulted in loss of custody to my ex-husband. Work became more difficult and more seizures resulted in being sent home and then shortly after being fired.
Liz Weeks started The Epilepsy Support Group in Groton that has brought much knowledge and comfort to those with and without Epilepsy. EVERYONE in the group urged me to go to Yale New Haven Hospital and finally at 36yrs old Dr. Kamil Detyniecki and Dr Dennis Spencer at Yale preformed Testing/Surgery that verified that my seizures come from both sides of the brain with damage to both Temporal lobes. My seizures occurred both day and night. There is no surgical cure for me.
I have no memory of life without epilepsy. I really didn’t have a problem with my Epilepsy, it was the people around me that did. The only thing I hadn’t lost was my mind and that was questionable. The one thing that couldn’t be taken was my sense of humor. With the different meds and supplements, I was doing better with less stuttering and repeating. I guess you could have called me a “repeat offender”. I will never be able to work a full-time job again, but I will never stop looking for ways to cope with this brain disorder and knowledge is strength. What doesn’t kill you makes you Stronger!