My story of being diagnosed with epilepsy at nine years old

Dave was diagnosed with epilepsy when he was just nine years old. He explains how he felt when first diagnosed, the challenges he has faced and how he manages his seizure triggers.


How did you get diagnosed with epilepsy?

In 1993 when I was seven, I was diagnosed with a brain tumour after a large seizure that I have no real memory of.

After the operation and following radiotherapy I was on medication for two years.

Being two years seizure-free, I was offered the opportunity to come off my medication and I remember being excited to do so.

Unfortunately soon after my seizures began to come much more regularly. I’ll never know if it was a coincidence or not but at age nine, I was diagnosed with epilepsy.


How did you feel when you were first diagnosed with epilepsy?

Honestly, I was so young that I didn’t really understand what was happening. My family was all aware and took a lot of the burden away from me.

I knew something was wrong but I didn’t know (or realise at least) that whatever this thing was, it would most likely be with me forever.


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

How long do you have? I’ve had so many kinds of seizures over the years and even now they are unfortunately not very well controlled.

If I don’t take my meds they are much worse but I still have to take as many precautions as possible at all times.

I can walk into traffic, I’ve fallen downstairs, into the bath, I struggle with my memory, I get frustrated and angry after seizures, time gets distorted and I become very lethargic.

Weirdly, sometimes I have a worse headache and become more tired after a short seizure than a bigger one.


What challenges have you faced since being diagnosed with epilepsy?

I guess being judged. By no means is this by everyone but I got a disciplinary for being off work even though I’d fallen downstairs, carpet burned my face, and cracked a rib but I was told that I had to improve my percentage of days without absence.

Thankfully I work in the totally opposite environment now.

It’s hard as I have a three-year-old daughter and I can’t spend much time alone with her to ensure her safety, my family is great at supporting me and I couldn’t ask for more but it can be tough wanting to be independent also knowing I have limits.

Knowing that my epilepsy doesn’t just affect me, it affects my family and friends too. In a different way but having epilepsy doesn’t mean it’s just me that is impacted.


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

Yeah, I guess it’s all the good, all the bad, the seizure doesn’t happen and it’s back to business every time. It’s the ripple effect it has on you and other people.


Do you feel that epilepsy has stopped you from doing what you what to do?

Some things yes. I mean, I’ll never drive so I can’t jump in a car.

Also, I have to take more precautions than ‘normal’ people won’t have to think about but honestly, now I’m an adult I see things with a more positive spin.

I have a family, I started my own charity and I’m employed. I’m in my dream job.

It obviously helps that my team at Connect Alloa is incredibly understanding and flexible if I need time to recover after a seizure etc.

I can’t be as spontaneous as I’d have liked to be because I have to think do I have enough medicine, where are we going / how can I keep myself safe, who do I need to tell but honestly it’s again not meaning I can’t do things. I just need to plan a little more than some people.


What are your main seizure triggers and how to manage them?

  • Sleep – both the amount I get and irregular sleep pattern. I try and sleep as regularly as I can, resting when I need to.
  • Not taking my medication – making up meds in advance and setting an alarm if I need to
  • Not eating regularly, missing meals – eating regularly and eating all my meals (even if I’m never hungry in the mornings)
  • Adrenaline – trying to not get over-excited
  • Too much caffeine – limiting my coffee intake
  • Stress is a big one – being aware, prioritising tasks, and finding ways to reduce stress
  • Heat – is not usually an issue in Scotland, but when it’s very humid or when I go from cold to hot temperatures quickly it can be a risk


Do you feel there is a stigma surrounding epilepsy?

Definitely, but there for so many things like autism, being part of the LGBT community, anxiety, etc.

I think all stigma comes from a lack of awareness which can (unnecessarily) lead to fear, anger, or frustration.

I honestly wish people were just open to learning about anything they didn’t know as much about and we’d all be a lot happier.


What would you say to others who have been recently diagnosed with epilepsy?

Find a support network and be honest about what works for you, and what you need but also understand what they need and listen to them the same way you would to anyone supporting any condition.

It’s not always going to be easy but no one said life was, unfortunately.

You are a whole person and this is a part of that awesome person. I’m Dave and I happen to have epilepsy, not the other way around.

Finally, everyone has something they are dealing with every day, be it themselves or they might be supporting someone else, so we’re all dealing with things that other people might never really understand so just be the best version of yourself possible and bring some awesomeness into this world.

You might help yourself and other people.


Is there anything else you would like to add?

You’re going to have days that are awful but you’re going to have days that are incredible too whatever kind of day today is, just know that I appreciate you.

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.