Paige Wilcox is a young woman from Denver who has lived with epilepsy since she was very young, and who met with STW volunteers at the Epilepsy Foundation of Colorado’s annual Strides For Epilepsy 5k this past June. She is sharing her story now as she begins to seriously explore the possibility of brain surgery to treat her epilepsy. Thank you for sharing your inspiring story Paige!
As I sit here and think about it now, I don’t remember a day without epilepsy. I started having tonic clonic seizures when I was ten years old. I was sick one night and sleeping in my parents bedroom so they could take care of me, and they witnessed for the first time a seizure and I was taken to the hospital. The doctors said that it was most likely a one time thing. We went home hoping for just that, but one week later I had another tonic clonic seizure and that’s when we scheduled our first neurology appointment. Shortly after I was diagnosed with epilepsy.
Figuring out which medications work has been a constant battle. Initially, my neurologist prescribed Carbatrol. Each medication works for a short span of time before I start to have seizures again. I am on a combination of three different medications currently and with these medications I still have seizure activity. I am what they call drug-resistant. I have less than a 5% chance of any drug combination making me seizure free.
In 2010 I decided that I wanted to see if I was a candidate for ablative brain surgery. I did a sleep study, and the findings showed that I was not the ideal candidate. My seizures were never caught on the EEG the way the neurologists needed. I left the hospital that week on one extra medication and extremely disappointed. I accepted the fact that it was not a possibility. I continued to have seizures, both partial seizures and tonic clonic seizures.
On June 3rd 2013, I had a grand mal seizure at a concert in Denver. It started out as a partial seizure which I am familiar with, but turned in to a grand mal (tonic clonic). This was my first time having a tonic clonic seizure during the day. Since I was 10 years old, the seizures have always been in my sleep. I had pushed my body too far. I thought I could go without a medication for a couple of days because I had done it before and nothing had happened. Luckily my sister was there with me. That day scared me, and I haven’t missed a dose since. But my seizures haven’t stopped.
My neurologist said that it would be a good idea to revisit the option of surgery. I have now taken the WADA test, had a PET scan, and had cognitive testing so see if I am candidate. After these tests, the team of neurologists has discovered that my seizures originate in my right temporal lobe. With these results—much more conclusive than my original tests—they have recommended brain surgery. I check in to the University of Colorado Hospital on January 6th, very soon! Though they say I am a candidate for surgery, they still have to do a very invasive test to first make absolutely sure. On that day, they will implant EEG electrodes on the surface of my brain. After this, they will take me off medication to trigger seizures, and over the course of a week or so, they will locate the exact point where my seizures originate. When the neurologists get the information they need, I will hopefully be going in to have that part of my brain removed.
Today, I am hopeful. I am ready to fight epilepsy. I never thought that I would have the chance or opportunity to have seizure freedom, and as January 6th approaches, I am trying to imagine myself without the burden of epilepsy. Although I want so badly to be seizure free, and free of medication, and free of side effects, I also know that, even if things do not go my way on the 6th, that it is totally possible for me to live a full life even with epilepsy. My seizures have made both me and my family compassionate toward others and understanding of the hardships that we all go through. I would never wish to lose what my family and I have gained through epilepsy. I have always received love and support from friends and family and I wouldn’t be able to take this next big step in my life without the support they have given me.
Epilepsy does not define who we are. You are not alone, whether you have epilepsy yourself, whether you are a parent, a spouse or a friend. Stay in the fight. Love, support and compassion have helped me more than any medicine.