My Life with Seizure Disorder
Do you know someone living with seizures? Well, you’re about to meet me. My name is Tonya Heathco and I have BPNH, a form of Heterotopia ( hetero toe pee ah). Hetertopia is a brain abnormality manifesting primarily in seizures.
When a child, I noticed a short memory. I was always frustrated in school, never to the attention of my teachers or family. I was a loner and very secretive. I knew I was “different”, just had no explanation. I proved well in English yet couldn’t remember math skills beyond some basic addition. My memory was poor and I remained in a “play land” most of the time. No noticeable seizures.
As I became an adult, Hetertopia became evident. I was 18 and had my first Gran-Mal seizure. Several local medicals over a large span of time diagnosed their version of the cause of the seizure, constipation to stress. I was left frightened and alone. I moved forward knowing one of two would happen; seizures would become manageable or I would die alone and without answers.
Seizures increased in number and intensity. My uncaring husband remained abusive and advised everyone there was to be no treatment and no ambulance. I was not worth the time or money. Alone, in pain, scared, and feeling worthless, I moved forward.
I was taking medications at this time, without improvement. Gaining weight from the medicines I began telling myself I was fat, starting the cycle of self abuse. I was left alone, the negative feelings multiplied and were “medicated”. Seizures became deadly, over 100 a day. Some came 5 at a time leaving me without oxygen for multiple minutes. Yet, I moved forward.
In the late 90′s I visited with a doctor in Nashville. After many tests he was able to diagnose me correctly. “Heterotopia” he said as I shook with fear. He went on to explain since before birth cells in my brain had migrated to other areas in my brain to form hard tumors, non-malignant, called tubers. At this time these numbered 16 . They attach in foreign areas within my brain and irritate nerves in my brain.
He went on to tell me there was no answer in operating, I would be left bedridden without function. He told me of medications I had never taken before. He gave me instruction for home care such as stress management. Now not alone, I was given hope! I was given power! I was moving forward with a bounce in my step.
Years went by and I saw improvement. Seizures are presently 12 a month and I have days of feeling good again. From my experience came a powerful revelation. I was worthy and I was on purpose to give others hope and help them feel good again.
Early 2005, I had an inspiration. I was to move mountains in my life and build a legacy. A foundation to benefit all living with seizure disorders. Patients, family, and care takers. I was to assist in awareness for the public. The National Seizure Disorder Foundation was born.
Today, still in the fledgling phase, the foundation is growing. You will find hope if you are living with seizures. You will find resources if you are eager to learn how to help or learn more about seizure disorders. You will find me, Tonya Heathco. A talented, happy, empowered, beautiful, and peaceful owner of a brain full of tumors and the seizures to prove it.
No longer alone!