It’s up to us, together, to help more people learn about their treatment options, get the support they need and live better with epilepsy.
People like Lottie for example. Lottie’s experiences are shocking and tragic, but she was able to take control of her epilepsy – and her life.
Part 1: Diagnosis
I first went to my doctor with suspected absence seizures when I was 15. No one really explained what was going on. It was just a barrage of medical terms.
Three days before my first A-level exam I had a seizure that hospitalised me. Unable to sit my A-levels, I gave up on them completely.
My friends all disappeared off to university, while I stayed at home. I wanted to be a nurse, but I was told I couldn’t due to my epilepsy.
And that was just the start of the bad advice I was going to get…
Part 2: Moving on
I took a course to train as a teacher, but within months of starting university I was told again my epilepsy would be a problem. I quit at the end of my first term. My self-confidence gone again.
But that was when I met Bob. He introduced me to new friends and loved me, including the Epilepsy!
Our daughter, Sophie, was born in 2005, despite being told I shouldn’t have children – again because of the Epilepsy! I was happy, and my Epilepsy didn’t dictate who I was or what I did.
But all that was about to change...
Part 3: Disaster...and plan-B
In 2012 I had a big seizure and banged my head. A blood clot formed on my brain and my seizures got dramatically worse. I became severely depressed and eventually suicidal. I couldn’t work and was in and out of psychiatric institutions.
Surgery to reduce my seizures wasn’t an option because my epilepsy was too widespread, but Bob heard about something called ‘vagus nerve stimulation therapy’ or ‘VNS’. We went to an Epilepsy Action event nearby where they were talking about VNS and suddenly I knew I had a plan B!
Eventually – reluctantly – my consultant referred me. I had the VNS implant operation in 2014 and my recovery began...
Part 4: Living better with epilepsy
The year before I got my VNS implant I had 48 tonic clonic seizures. In the year after, I had just seven. I returned to work and to life. I can laugh again, and my depression, thoughts of suicide and feelings of worthlessness have gone.
I live my life and it’s no longer dictated by my epilepsy!
Now, being able to attend a local Epilepsy Action ‘coffee and chat’ group helps me to feel part of something. It’s really reassuring to have other people affected by epilepsy on hand to swap notes with – we are the experts in our condition!
As Lottie’s story shows, there really is more we can do together to help more people find ways to live better with epilepsy.