Vicki and her husband

My experiences of living with epilepsy

Vicki has been living with epilepsy for around 22 years. Here she shares her experiences of being diagnosed at a young age, the challenges she has faced, and how she has overcome them.


How did you feel when you were first diagnosed?

When I was first diagnosed I was a child at the age of five, so I didn’t really understand.

I think I’ve blocked most of that time out. The only memory that really sticks out is getting regular EEGs and the glue really hurting my head.

However, when my epilepsy returned as a teenager, I struggled. I was nearly 17 excited about learning to drive and that all crumbled away. I can’t lie: it was hard.


Where did you have your first seizure and how did you feel?

From what I remember I took my first tonic-clonic seizure in primary school. All I remember feeling was confusion and exhaustion.


What type of seizures do you have? How does it affect you?

Nowadays I only take absence seizures. I lose count of how many I take a day after we record over the 100 mark.

My epilepsy affects me in so many ways.

After a seizure, I always feel a bit lost. My brain has to try to retrace its steps to what it was doing before the seizure and that’s hard. My seizures leave me exhausted.


What challenges have you faced since being diagnosed and how have you overcome them?

There have been so many challenges I have had to overcome. I had to adapt my work life and jobs to ensure my safety.

This has taken practice but I’ve now learned that speaking about my epilepsy is the only way I can get the full support I need.

My biggest challenge has actually been family and friends not understanding my condition and tearing me down.

I’ve been told it’s my own fault that my brain is messed up, I’ve been told to stop pretending. That was hard but it pushed me to build myself up and I become my own support.


We always say that epilepsy is more than seizures, do you feel this has been your experience?

Epilepsy is definitely more than just seizures. People don’t realise that epilepsy affects us in so many ways.

From feeling anxious constantly to being exhausted to having permanent tingling sensations, I feel it all.

However, memory loss is a huge hurdle for me. I’ve got used to finishing stories three hours later as I’ll constantly forget what I’m saying.


What would you say to someone who has been recently diagnosed?

I would tell someone that has been recently diagnosed to reach out to a support group.

You don’t have to share your story but just seeing that there are other people living with it can be helpful.

I know it’s scary to be diagnosed but know that having epilepsy doesn’t stop you from living!

I’ve embraced my diagnosis and grown with it and believe that it has pushed me to be able to do the things I’ve done like travel and work abroad and then to take on a full-time manager job.

Having epilepsy doesn’t stop me from having the key skills that most companies want. We are strong and we can take on the world any way we want!

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at or call 0141 427 4911.