#BeyondSeizure: Epilepsy and memory: Ailsa’s story

Ailsa has been living with epilepsy for about 25 years. She shares her experiences of living with the condition and the impact it has had on her life and memory.


How did you feel when you first found out you had epilepsy?

I didn’t really understand it until my parents explained it to me. They said this is what you’ve got, and you’re going to have to take medication.

But we’ll help you out for about two or three weeks and then you’re on your own.

It wasn’t so much that you are on your own and we aren’t going to deal with you. The way they put it was they aren’t going to be here forever and then I would have to deal with it. Deal with medication changes and things like that.

Now if you ask them what medication I am on they would have no idea.

That’s the one bit of independence that I have got.


What sort of impact has epilepsy had on your life?

It’s left me with anxiety. I was diagnosed with social anxiety disorder when I was in a teenager, about 15.

I was really anxious to go outside and meet people and I had no idea why this was happening.

Also, I was having panic attacks and not being able to do things. So, I ended up going to the doctor and being referred to a psychologist and they said you’ve got this anxiety disorder, but it can be treated through Cognitive behaviour Therapy (CBT).

After CBT you’ll not be ok but you’ll be able to manage it.


What type of seizures do you have and how does that affect you?

I mostly have focal impaired awareness seizures. Very rarely I have tonic-clonic seizures. I haven’t had one of them for about three or four years.

The focal impaired awareness seizures last about two minutes and then I’m back to what I’m doing.

The tonic-clonic seizures, it can take a couple of days to recover.


What challenges have you faced with your epilepsy? Can you give an example?

Well, I’ve lost friends. I have got a job, but I’ve lost friends from it.

I’ve really only got my family and maybe one or two friends and that’s it. In a way, I find that quite sad.

I’ve had quite a few injuries, broken bones, head injuries, lost teeth and things like that. So, I’ve got a wonderful dentist.


In what way has epilepsy impacted your memory?

If you ask me something, about three minutes later, I would forget it. I’ve got a pen and paper and have to write things down because I will forget it. I have a book that says things I forget because I’m old.

I try and see the funny side of it because I’d rather see the funny side than think oh God, this is stupid and this is a really horrible part of the having this condition.

And knowing that this is because of the epilepsy and medication side effects. I try to take the mickey out of myself.


How do you remember things like medication?

I’ve got alarms on my phone because honestly, without the alarm I wouldn’t take them. I’d sleep till about 12 in the afternoon and then forget at night and wonder why I am having so many seizures. This isn’t like me.


What would you say to someone who has also been sort of recently diagnosed and for people who have problems with their memory?

I would say ask questions about your memory to your Epilepsy Specialist Nurse or Neurologist. They might be able to change your medication or change your dosage and see if that works.