Craig is a Master Technician for a car company and lives in Norfolk. In this interview, he discusses his epilepsy journey, from diagnosis at a young age to the challenges he’s had to overcome and his hopes for the future.
When were you first given a diagnosis relating to epilepsy? What tests were done?
I was first diagnosed with epilepsy when I was 4 years old. Seizures began at a varied frequency, ranging from once a week to one every few months. It was originally photosensitive and provoked by irregular sleep patterns.
This was 30 years ago, so medical knowledge has progressed since then. I started, and continued to have, CT scans and MRI scans. Along with this was EEG tests. They were the worst in my eyes as when they carried out the test they would use a strobe light and take you almost to the point of having a seizure. This meant I didn’t have a seizure but did have the aftereffects, such as needing to sleep for up to 2 days, severe vomiting, and horrendous migraines.
The medication was always trial-and-error. I would take meds then go back after a couple of months to retake the test again. I was put on a particular medication when I was 14 and had no further tests until May 2020.
My seizures came back much more frequently in May, meaning I had to have another EEG and medication change. I had 3 seizures in one day and I ended up in hospital due to a head injury. At all other times my epilepsy has been managed at home by my parents, and now my wife, so there was no need for trips to A&E.
What was your immediate reaction to being diagnosed with epilepsy? And your family and friends?
I was too young to understand when I first received the news, but all through my youth I was terrified by my condition. My parents, however, were not overly shocked as my grandfather also suffered from epilepsy.
The upset got worse as I got older. The more I understood, and the more I didn’t have a normal life, the more terrified I was. I think hearing the news you have epilepsy is upsetting for everyone, but not remotely as bad as what you must experience as life goes on. Memory loss, concentration issues and depression commonly come with the condition. Not to mention the point in life where all your friends are going out and having fun, while you are stuck at home feeling very alone.
How has epilepsy interrupted your life?
Epilepsy affects life greatly. Firstly, being isolated and not being able to live a ‘normal’ life is tough. The older I got the more troubles I’ve had with depression. Battling the everyday issues. My biggest problem is memory loss, mainly short term, which is worse when I’m tired and can cause many obstacles throughout each day. My concentration levels are low. All this is on top of the fatigue, which I experience daily.
These factors make everyday tasks much harder than for those without the condition. Finding a good career can be a challenge. I am a Master Technician for a Volvo dealership; gaining that qualification was very hard, let alone with memory and concentration issues.
It’s very difficult to get people to understand issues relating to epilepsy and because of this, you can become very isolated and alone. This can then increase depression and tiredness, thus worsening the memory. A very vicious circle.