Tanya’s Story
Hi, my name is Tanya Downey and for the past almost 24 years now I’ve been living with Epilepsy. I was diagnosed at 21 with Partial Complex seizures, which is the most common type of epilepsy in adults.
These seizures last between 30 seconds to 2 minutes. Anyone with this type of seizures appear to be daydreaming or staring blankly, and usually aren’t aware of their surroundings.
I was pregnant when I started having symptoms that consisted of biting my tongue and clenching my hands leaving nail marks, and sometimes breaking skin. There was no history in my family of epilepsy, and being pregnant it was difficult to try and figure out.
2 ½ months early, I went into labor and this is when I had my first seizure. I remember being at the hospital in a bed reaching for my mother’s hand, and then it was like I was back to the conversation like nothing happened, just everyone around me looked panicked.
It took a while to get in to see my doctor due to having a premature infant and focusing mainly on her and her health, but when I saw my doctor she explained everything to me. This was a shock to me, and I was concerned being a single mom what other challenges would I be facing. I was put on Dilantin 200 mg daily and if my levels were ever low during routine blood tests they would add 50 mg until my levels were back to normal.
One of my most proudest but scariest moments ever was the day I went to pick my daughter up for lunch. She was in grade 1 at this time. On our way home I started feeling different, almost out of body and dizzy. I sat to try and calm myself as my daughter stood next to me. All I remember after that was walking across the street with my daughter holding my hand literally 10 steps or so away from home. When I fully came back too, I had realized she had walked us across 3 crosswalks by herself.
I was proud because what I explained to her at her age she took in step by step, and I was scared because I wasn’t coherent enough to protect her. To be safe I called the school and told them she’d be back the next day.
At the age of 46, I’m still on Dilantin 200 mg and I haven’t had a full blown seizure in over a years. I do still have minor ‘episodes’ (staring blankly) but for the most part I can say I’m pretty comfortable with Dilantin being the prescription my doctor chose for me.
I’ve always pictured a cure meaning no more depending on meds, being free to watch what I want with no concerns of flashing lights, usually I smell metal when I know I’m off, so no more wondering if I’m the only one smelling it. Just being reassured that no matter what I do, when I do it, where, and how I get there. I’ll be seizure free.
Having lived with epilepsy, I’m always trying to make sure people are aware, so in times I ever do have a seizure they know exactly what to, and what not to do. On my fridge there is an epilepsy chart with detailed information regarding specific types and how to handle them. Awareness means to me the exact situation I went through with my daughter at such a young age. The knowledge is out there, so share it in case someone ever needs your help.
“God gave his toughest battles to his strongest soldiers.”
The courage of those living with epilepsy,
inspires us and fuels our journey.
Your gift will help us to continue on the road toward an epilepsy cure.