Torie’s story - Seize Control
Torie, 33, was diagnosed with left temporal lobe epilepsy at the age of 10. Her frequent seizures had a real impact on her quality of life.
“My parents didn’t notice my behaviour being different to that of any other child until I was about 10 but I remember having ‘funny feelings’ from the age of about six. It turns out that these were absence seizures.
The older I got, the more severe my epilepsy became. The fact that my varying anti-convulsants (epilepsy medications) had never controlled my seizures, was becoming a real issue. During my 20s I started to have very unpredictable generalised tonic-clonic seizures, in addition to my absences. In my late 20s/early 30s I could have six or seven a month, or absolutely none at all.
Enough was enough!
The impact of the seizures was doing my head in (excuse the pun). During the tonic-clonic seizures I could stop breathing. I was also injured a few times and sometimes found myself in dangerous situations. I fell on a railway line. I literally smashed my collarbone against my desk. Quite honestly, the epilepsy was taking over my life and certainly contributed to me developing depression. I felt that my life wasn’t worth living. Despite me being in full-time work and living independently, I was constantly exhausted and wanted more out of life. Seizure freedom was what I desperately needed.
I expressed all of this to my neurologist. I’d tried so many anti-convulsants, but they’d all proven to be ineffective. So he brought up the option of brain surgery. Once it had been identified through video telemetry that I was an ideal candidate for the surgery, I went on the waiting list. Although nervous, I was very excited prior to my operation – a temporal lobe resection in 2013. I even took pictures of my partially shaved head and shared them with my friends on Facebook. It would appear that my mates were more nervous than I was!
I ended up having one major operation, then two more to stop a cerebrospinal fluid leak [this is when the fluid surrounding the brain and spinal cord leaks.] However, I was back home after one and a half weeks.
Today I am reducing one of my anticonvulsants, and I haven’t had a major seizure since the operation! I have had a few auras and a couple of tiny absences – but I’m absolutely fine with that.
After the age of 14, I couldn’t ride my bike (after an absence seizure left me lying in the road), but I’ve recently started riding again. I want to go sky diving again too. These are things I didn’t dare consider prior to the operation.
What I know now – but wish I’d known before.
Coming out of brain surgery was a very emotional time for me and is still in some ways. It has been a bit like starting my life again and therefore emotional support has been so important to me.
People who are considering surgery must be aware of all the risks, including the risk that they might experience depression after the operation. The recovery period is not all plain sailing. It would have been ideal for me to have had someone there to help me in the house during the first week after my operation. You must also take those painkillers (you will need them!).
What I could do for the first few weeks was limited and my memory was appalling (although much improved now)! I’d say just give yourself time and don’t put yourself under too much pressure to do everything until you’re ready.
I’m supporting Epilepsy Action’s new Seize Control Campaign and would encourage everyone with epilepsy who still experiences seizures to talk to their doctor about other treatments that might be suitable. Surgery was definitely the right option for me. I only wish that I’d had it sooner!”
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