Lauren was diagnosed with epilepsy in November last year. She shares how she felt when diagnosed with epilepsy, the challenges faced and how Epilepsy Scotland’s Helpline has helped her.

Can you tell us how your got diagnosed with epilepsy?

I got diagnosed in November last year. I’d been having these weird almost de ja vu like episodes for a couple of years, but honestly never thought much of it.

Sometimes I’d have to sit down or rest, but it didn’t have a huge impact. Last September however, I had what turned out to be a suspected tonic-clonic seizure at work.

I hit my head on a machine (I work in a gym) and split it open, so had to go to hospital with the wound – I honestly though it was just stress, but when I explained the same de ja vu feeling I had before this, and before losing consciousness that day, the doctor explained it sounded like a seizure and I would have to go to a first seizure clinic.

Of course, there were further tests, and then the neurologist gave the epilepsy diagnosis.

How did you feel when you were diagnosed with epilepsy?

It was hard, and I felt almost like I was grieving my “old life.”

It was good to have some answers, especially to why I completely lost consciousness seemingly out of nowhere.

I was grateful for how well it was handled the whole way through, but it was a lot to take in. Also, I felt like I was losing my freedom, and generally I felt anxious and sad.

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

Aside from the one suspected tonic-clonic seizure, I generally have focal seizures. It usually just feels like I’ve triggered a memory I can’t place.

It can be quite overwhelming and generally takes me out of the room so to speak – like I’ve lost awareness of reality for a bit.

I found over the last few months it’s felt more impactful, just because I know what they are, and I feel nervous about it developing into something like what happened in September.

But with time, I now just need to sit back for a few minutes and carry on, fortunately I can continue as normal after a short time.

Why did you decide to contact the Epilepsy Scotland Helpline?

I contacted the helpline because I honestly just needed to talk to someone who got it.

I was at a real low point and struggling to cope with everything, it felt overwhelming and like it was never going to feel better.

As much as my friends and family were there for me, there was only so much they could say. I called just to talk to someone, not really knowing what to say.

I called and ended up talking through the diagnosis, finding out about support available, finding out what was “normal” with adapting to medication, and just to offload and find some reassurance that I wasn’t being wildly dramatic.

Also, I wasn’t sure really what I needed but given the help I’d already gotten from the Epilepsy Scotland resources available online, it seemed like the best place to go.

How has the Helpline helped you?

The person I spoke to was incredible, and I was so grateful for that. I was very tearful and scared about speaking to someone, but they were fantastic and reassuring.

As I may have said, I didn’t know much about epilepsy at all, so it was great to talk to someone about that – about the support available, about my own experience.

I was struggling with the medication, and it was helpful to talk that through, obviously they’re not there for medical advice, but they had knowledge and experience to reassure me about what was normal.

Like I said, I wasn’t too sure what I wanted from the call, but I came away feeling like a weight was lifted – they listened, reassured me, and took the time to explain more to me about the different resources available.

I felt like I was talking with someone who understood exactly what I was experiencing, and I can’t explain how comforting that was.

It sounds cliche, but it made me feel a lot less alone, and in a condition that felt quite isolating for me personally, that meant a lot.

It was also helpful to see that was I was feeling was valid.

Additionally, it helped me to find a bit of space to think about what I could control – keeping notes of my seizures, noting potential triggers, and advice on how to manage these.

It’s something where you lack control, as you can imagine, thinking about what I could was a great perspective I hadn’t really considered.

I feel like when I called, it was the first time I considered that my diagnosis wasn’t the end of my freedom.

What advice would you give to people thinking about using the Helpline?

I know it can be scary, for so many reasons, but it really is there for what you need – help.

I was terrified to call, but I’m so glad I did because it was a huge turning point. There’s no judgement there, and it’s okay if you don’t even really know what you want from the call.

I wasn’t sure what I wanted to get out of it, or what I was going to say – I just phoned and kind of broke down in tears, which I didn’t expect, but the person I spoke to was amazing and just seemed to know exactly what to do and say.

I know speaking to a stranger can be a little daunting, especially for something that can carry so many emotions with it, but they get it and that is important for coping I found.

It’s okay if you’re not sure what to say, it doesn’t feel like this scary formal question and answer call – just a friendly voice on the other end.

Our freephone Helpline is open Monday to Friday between 10am and 4.30pm. Call us on 0808 800 2200 or email contact@epilepsyscotland.org.uk

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