One of our social media followers shares their experiences of living with epilepsy and the struggle they have had sourcing anti-seizure medication.

Can you tell us a bit of background on how you got diagnosed with epilepsy?

Well, about a year ago, I just started feeling really not right for a while and I kept going to the doctors obviously. They were like oh, it’s nothing. Don’t worry about it.

I started to go back because I felt like I had flashing colours and feeling very weak in the shower. I couldn’t stand up very well and I just felt very weak and had visual disturbances.

Then I had a very traumatic experience. I went to the supermarket and had a massive seizure, just out of the blue. I fell back onto the edges of the grill on the display cabinet.

So, I had a head injury as well and an ambulance didn’t come for three hours. That’s how it started for me.

How did you feel when you were diagnosed with epilepsy?

It was really traumatic. Initially, I knew something was really wrong. But again, they were like, we aren’t going to diagnose you with epilepsy because it’s a one off at this time.

I could have died in that supermarket you know. I had a grade one injury.

The doctors don’t want to diagnose you now and we just want to see how it goes.

I had a number of seizures before and they would actually tell me that I had epilepsy.

But I was having them all the time at home and the whole thing was just very traumatic.

It completed ended my life as I knew it and I was already very ill with other things at the time.

What impact has epilepsy had on you?

Well, it’s totally ruined everything. I can’t be on my own and my quality of life has been ruined.

I think what really upsets me is the way clinicians treat you. They say don’t let it stress you out or at the hospital they say only 1% of people sees epilepsy have a devastating effect on their life.

You know just live your life and don’t let it affect you. It feels like they deny the effect epilepsy can have on you.

How has those struggles to source your medication impacted you?

It’s just you can’t relax and you are always worried and scared that it’s going to be a problem.

It’s obvious that there is a problem somewhere and they’re causing it. They’re not telling you and it’s just wrong.

I can’t get the medication anywhere else. I can’t go anywhere else and that’s the big issue.

What would you like to see happen, so there are no medication shortages in Scotland?

I want them to stop the song and dance and be honest with me. Just stop it.

I didn’t choose to have epilepsy, did I? I was promised that you should be given your medication and not be giving this absolute shower of misery.

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.