Cath was diagnosed with epilepsy at the age of 49. Here she shares how she felt when she was diagnosed and the challenges she has faced.

Hi! I’m Cath. I have had epilepsy for nearly three years. I was in complete shock when diagnosed because it came out of nowhere at the age of 49.

My first seizure was extremely traumatic and sudden. I was in Lidl’s with my husband. My last memory is telling my husband I was just going to look at the middle aisle. My next memory was a lady telling me I was ok and not to move.

I was in and out of consciousness and had a bad head injury catching the corner of the metal gage when falling.

I lost my mental capacity for about four days. There are lots I can’t remember and couldn’t work out how to do things I knew how to do!

It was the most scariest and lonely time in my life because I didn’t know if it was going to get better.

I went home after four days but then had more so was officially diagnosed with epilepsy and put on medication.

I had tonic-clonic seizures about six in total but now I have partial seizures at night time some I’m aware of, some I’m not, and only know because I’ve bitten my tongue and cheeks.

Challenges

The challenges have been getting the right medication and reacting to problems as they have happened. Whilst trying to keep seizures at bay.

I took medication really well for 18 months and had no problems but suddenly I couldn’t tolerate it and it made me really sick and it affected my capacity and brain function.

I got help from the epilepsy team via phone due to Covid and I’m now trying Keppra but it’s early days.

It’s made me scared and insecure so I don’t go out much anymore but I also have other serious illnesses as well.

Epilepsy is more than seizures

Epilepsy is a lot more than just seizures! It’s changed me. It’s a hidden disability so people who haven’t experienced it don’t understand how traumatic and serious it can be when it happens.

At first, you are going to be scared and afraid and it’s ok to feel like you do. Once the shock has passed it gets more manageable and normal.

Making sure you take your medicine at the right times is important and it takes time to get to the right doses.

Phone the Epilepsy Support Nurses if you notice any changes or difficulties and they can help support you as much as possible.

There are epilepsy support groups that are brilliant as it helps to stop feeling so isolated especially during the Covid pandemic.

If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer on dcoates@epilepsyscotland.org.uk or call 0141 427 4911.