Rohan quote

Living with epilepsy: My story

Ahead of our Grampian Roadshow at the Trinity Shopping Centre in Aberdeen on Wednesday 16 November, we talked to Rohan from Aberdeen who shared his experiences of living with epilepsy.


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

It was a bit of a shock at first but at the same time glad to get the diagnosis of what was going on and explained a lot.


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

My seizures mostly consist of me zoning out, getting excessively sweaty, and usually sick.

I also hallucinate most of the time when I’m away to have one or when I have one.

It affects me as it makes it hard to work with it going on and it affects me mentally as well quite a bit.


What challenges have you faced since being diagnosed with epilepsy?

One of the biggest challenges was giving up my licence, I had not had it too long and it was a big thing for me and so not getting to drive has affected me big time!


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

Yes very much so, Obviously there are more seizure types than people think. You mention seizure and everyone immediately thinks of your typical seizure. But like mine, they ain’t all like that.

But yes there is more to it than just seizures. I have suffered really bad memory loss and attention span as well.


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

I don’t really get main triggers as such. They discovered my epilepsy from a sleep-deprived EEG so I think I tend to mostly get them when tired, But It can be anything.

A lot of the time I get really bad deja vu and that sets it off quite badly.


Do you feel there is a stigma surrounding epilepsy?

I think there can be at times because again everyone presumes seizures as your stereotypical kind of ones (which a lot of people might get).

But I’m lucky to not get them all the time. So people do sometimes think you a wee bit of a hazard or inconvenience but you’re not.

We are just as human as everyone else, just because we have epilepsy doesn’t make us completely different to others.


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

Don’t overthink too much, I know sometimes it’s easier said than done but once you get the right meds and support we will all get through it together.

If you need help or support don’t worry about asking for it!


Is there anything else you would like to add?

Epilepsy or not, we are all the same at the end of the day. We are just unique and it’s nothing to be ashamed of.


Grampian Roadshow

We are holding a roadshow on Wednesday 16 November at the Trinity Shopping Centre in Aberdeen. For more information, please click here.