Hey everyone! I’m Abbey and I’ve wanted to share my story for such a long time, but it needed to feel right for me. And right now there is no time like the present!
My journey started nearly 20 years ago. Before social media and the internet phenomenon. I had no idea what epilepsy was, nor did me or my family know anyone with epilepsy. All we had was an outdated book with some pretty scary EEG pictures to hand. I was diagnosed with childhood absence seizures. Formerly known as petit-mal. I had no idea what this meant other than weekly hospital appointments for bloods, some really frightening EEGs and numerous trials with medication. Between me and my family none of us really knew what we were dealing with. How was this going to impact my life? How was my school going to support me? How will it effect everyone around me?
I was always told ‘it’s childhood absences by 7 most grow out of this so we just need to medicate to control the seizures’. Between sodium valproate and a horrific string of behavioural changes we played around with lamotrogene. Although this contained my seizures they never subsided completely. I continued right on through school. Never growing out of it. Eventually at secondary school I’d had enough of seizures . At 14 I wanted answers about the rest of my life. And hallelujah a new consultant a fresh pair of eyes and ears.
I would transfer onto new meds’ on the market. Only really used for lifelong juvenile absences. Ethosuximide. I cannot thank That last consultant enough. To have finally after over ten years I was finally stepping towards life seizure free. I cannot explain the elation of this feeling. To continue on meds for life but to live seizure free was an absolute blessing. One I had waited for far too long.
Eventually after more EEGS my brain no longer appeared to be showing any signs of some abnormal activity. And the decision was made to go med free. This was so extremely scary. I’d been on meds for as long as I could remember. But to still be seizure free for so long is such a blessing! And one I am forever grateful for.
I have been so incredibly lucky to have such supportive friends and an amazingly strong family. Never ever give up the hope. Just as I was about to give up I had my break through!! Talk about it, keep the conversation going, and always believe.