My experience of living with photosensitive epilepsy

 

We are looking for people to share their experiences of living with epilepsy and get people talking about epilepsy to help fight the stigma attached to the condition.

This month, Jenni who has photosensitive epilepsy, describes her experiences and how she had her first seizure whilst on a plane going to Australia.

 

How long have you had epilepsy?

I was first diagnosed in 1996 and I have had epilepsy for 23 years.

It is controlled by medication and I haven’t had a seizure since being on medication.

 

Where did you have your first seizure and how did you feel?

I had my first seizure in 1996 when I was on a plane going to Australia.

I felt really scared, my mum was with me and she was very frantic, and my brother was quite scared as well.

After the seizure I felt very disoriented and very confused. I was taken to the Royal Children Hospital and I was assessed for a couple of hours.

A week later I had a CT scan. It took a while to adjust with epilepsy. It’s psychological. I had to research my epilepsy.

It is photosensitive epilepsy that I have so I can’t watch movies with strobe lights or go to the theatre.

I have managed to adjust, and it is mainly psychological in how to deal with it. Everyday is a learning curve, praying and hoping that I don’t have a seizure.

I take medication every morning and just go with the flow.

 

What type of seizures do you have?

It was tonic-clonic seizures. I have to give myself half an hour when waking up in the morning.

My medication controls my big seizures. I am on Epilim and at the moment I am not having any seizures.

 

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How does it affect you?

It makes you really tired and confused. When I had my first seizure, I couldn’t remember anything from my childhood, but it gradually came back.

It makes you so tired and exhausted. But thankfully I haven’t had a seizure for a while.

When I do have a tonic-clonic seizure I go to my bed for half an hour or an hour and I feel better afterwards.

 

How did you feel when you were first diagnosed?

Devastated. I was transferred to the Western Infirmary and I was absolutely devastated.

They did the EEG test and strobe lights, which trigger my epilepsy. My mum and my whole family were devastated.

Everyone had to adjust. Since then I am doing fine, and I haven’t had a seizure and I now able to control it.

 

What challenges have you faced since being diagnosed?

I can’t join specific organisations and I can’t do night shifts.

You don’t get employed because you have epilepsy, and some employers don’t accept you when they should.

I’ve had a few setbacks. Trying to get used to the medication I was on.

That was a big challenge, but I managed to get used to it thanks to the support I got from the Western Infirmary.

 

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

I can’t go to nightclubs because of the strobe lights.

At the beginning, when I was diagnosed I couldn’t go to the nightclubs at all but I am now learning that I can look away if there is strobe lights or something on the television or a movie which has strobe lights, I can switch it to another channel.

I am getting used to living with epilepsy and avoiding places which have strobe lights. It has taken a while, but I have got used to it now.

 

What would you say to someone who has been recently diagnosed?

Do your research on your epilepsy. Research what kind of epilepsy you have got because there are different kinds.

Contact Epilepsy Scotland’s helpline for support. Talk to someone who also has epilepsy. There is great support out there.

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

 

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