Things are definitely still bumpy and new to me, but I have found that the more educated I get and the more I explore the epilepsy community the better and more stable I feel. I have my own YouTube channel that until now didn’t feature much about my epilepsy but I’m not afraid to be a voice for others I have a passion to inspire!
This story is part of the Epilepsy Blog Relay™.
When I was 18 no one in my family had any trace of epilepsy including me, or so I thought. But that’s when I started having absence seizures during the day.
My first absence seizure happened while on a family hike, the Mt Lassen Peak trail. I remember being a little ahead of everyone, then sitting down on a rock to rest and then all a sudden I was hiking again and everything was a little blurry. After it happened I remember going back-and-forth with my mom over whether or not we should go home. Mom argued that we should go home and obviously she was right.
My family recalls when they got to me, I just kept asking “what are we doing, why are we here?” Yet the hike was my idea! Most of the family thought I was joking, but somehow my mom just knew something was not right.
After 2 more absence seizures, I had a grand mal while sleeping. I happened to be sharing a bed on a camping trip with my little sister. Sadly the experience has deeply traumatized her and I worry about my effect on everybody.
Then we started seeing the doctor to find out the cause. After the usual tests, which resulted in no cause, we decided to start me on seizure medication. Thankfully the meds stopped the seizures but I began sleepwalking and had other side effects. Finally after months and months went by we decided my neurologist wasn’t passionate about helping me. So we found a new neurologists in a bigger city 3 hours away. I did a week long EEG in a hospital. I was finally diagnosed with frontal lobe Nocturnal Epilepsy. Everything changed we started finding medications that worked really well for now at least!
Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.