My story of living with epilepsy for over 25 years

David has been living with epilepsy for just over 25 years. He shares his experience of having epilepsy, the seizures he has, and what he would say to someone recently diagnosed with epilepsy.


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

Shocked really. I hadn’t been feeling well and got the doctor out on Monday 21 October 1996 and he said that I was suffering from the flu and to take paracetamol.

That afternoon I went to the toilet next thing I knew I was coming around in the hospital, no idea where I was. Took the best part of three months to diagnose I had epilepsy.

No one else in my family has got it so we didn’t know what to expect.


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

Frontal lobe epilepsy (and weakness down my left side due to this as well).

At first, it didn’t affect me greatly I got on with things and went to work. However, as I got older this got worse and it has caused me to be having more seizures.

Now I was on Tegretol, Epilim, Propanalol, Clobazam, and Cyclizine (anti-sickness) medication.

However, in 2020 it was decided it was best to go into the hospital (my sodium level was very low) and to come off Tegratol (went onto Keppra 750mg and come off the cyclizine) these were interacting.

I’m still having seizures and myoclonic jerks (which started in about 2017). I will get severe headaches and usually, I won’t sleep at night even though am tired enough.

I also have very bad anxiety, panic attacks, and depression since being diagnosed with epilepsy.


What challenges have you faced since being diagnosed with epilepsy?

People not knowing how to treat you simply because you have got epilepsy. I found people didn’t want to know me after I got it.


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

Yes. You get people looking at you saying that you have nothing wrong with you but that’s the thing they are ignorant about epilepsy.

Even though TV has shown it in soaps it hasn’t made that much of a difference. People think you can put seizures on (I’ve found that out in my experience) but you can’t you can have seizures anytime.

Recently most of my seizures have been during the night which is frightening.


What has helped you manage your epilepsy?

Apart from my medication, the fact I have got two decent specialists that I can talk to at any time.

Also, I have got some people I talk to who have epilepsy as well and we talk about it very openly and encourage each other.


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

Yes. I used to enjoy doing sports (golf/walking/football) and going out and I’d worked since I left school in 1992.

However, my seizures got so bad in 2011 that my doctor and specialist both agreed that it wasn’t worth me working. I was not only a danger to myself but to others as well.


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

Lack of sleep, stress, flashing lights, and certain foods (they give me severe headaches which can lead to seizures).


Do you feel there is a stigma surrounding epilepsy?

Yes. I’ve had seizures outdoors and people walk past you and treat you like your just a drunk.

Even though I wear a bracelet and chain that has on it I have epilepsy (mainly for ambulance staff) no one looks. All they do is look down on you.


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

It doesn’t need to be the end of the world now.

There is plenty of new medication out there and plenty more websites where you can learn about every type of epilepsy certainly is more than when I was diagnosed.

The main thing is to listen to your doctor and specialist. It may take a while to get the right medication but just trust the doctors.

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.