Peter’s story

Published: September 17 2022
Last updated: September 28 2022

Peter explains how it feels waiting for a diagnosis

My first seizure came completely out of the blue in February 2019.

Since then, I’ve gone on to have over 170 more. But EEG tests showed no seizure activity linking to epilepsy. A letter initially diagnosed dissociative seizures, with a note to ‘keep an open mind’. This was due to me having seizures with auras preceding them, along with several tongue-biting episodes. My superstar wife Jane was able to capture key parts of a recent seizure on her phone. Just this week, my doctor explained that I most likely have focal epilepsy. So, I’ve started taking a different AED along with doubling the dosage of Clobazam, too.

Personally, I’ve felt like I’ve been trying to solve a Rubik’s Cube for the last 2 years. Solving one humongous neurological mystery, whilst at the same time being a husband, father and trying to continue with work. I’m a team manager in retail and have been in my current job for 15 years.

Waiting for a diagnosis has been torture. But thankfully Jane has been my total rock. My two boys Josh (13) and Lewis (8) are also my world. I just wish that Josh never has to go through again what he did in March. While my wife was out briefly, I had a seizure, but my amazing boy stayed calm and dialled 999.

This week I’m taking on Epilepsy Action’s Walk 50 challenge for National Epilepsy Week – but running 100k instead! I’ve been a keen runner for many years and have never had seizure during a run. I can run a 5k route inside 24 minutes and my fastest ever is a sub-50-minute 10k. I usually run outdoors but as I’ll be covering so much in one week, I’m doing it at the gym, Volaire Huyton. They have been fully behind this challenge and always treat me with decency and dignity. I’ve just managed a half marathon in under 1hr 55mins. The farthest I’ve ever run!

Every bead of sweat I drop during this challenge is for everyone everywhere, affected by any kind of seizure. A seizure, no matter what type, impacts the whole family. I think they feel the emotional scars more than me. Honestly, I don’t know how people cope with the mental struggles of epilepsy without someone by their side. Charities like Epilepsy Action are so important as they provide a support mechanism to those who need help, especially with coming to terms with diagnosis. I am hugely grateful to my family and friends who have already donated. With the right mindset and attitude, I truly believe anyone is capable of anything.

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