Billy was diagnosed with epilepsy when he was 17 years old. He shares how he felt when he was diagnosed and the support, he has received by calling Epilepsy Scotland’s freephone Helpline.
How did you feel when you were diagnosed with epilepsy?
My diagnosis was a bit unheard of. Basically, I have hydrocephalus and I’ve got a shunt. It’s a condition that affects the brain.
When I was born, I had a bit of a problem with my ventricles, so a shunt was inserted in my head to control the fluid movement from my head to other parts of my body, mainly my stomach.
In September 2012, my shunt packed in which led to me ultimately taking a violent tonic-clonic seizure.
What challenges have you faced since being diagnosed with epilepsy?
My seizures have steadily increased. Certain things can trigger a seizure such as if I am too warm, or if I am not drinking enough fluid.
I have to drink enough fluid to keep my shunt working at 100 percent and getting annoyed about silly things. Also, I tend to get quite tired.
How did you hear about Epilepsy Scotland’s Helpline?
Well, it was when I was seeing my epilepsy nurse for the first time.
We were basically talking about what support was out there and she said that there was a Helpline that I could get in touch with and since I’ve found out about that Helpline, I’ve reached out to Epilepsy Scotland whenever I needed to.
How has the Helpline helped you?
It’s been a huge help. I mean, I remember my mum even asking a question. Can’t remember what it was exactly. But can remember even my mum reaching out and it’s been a huge help for us both.
What sort of differences have you noticed since using the Helpline?
Once you get the help it seems to make situations a little bit easier to deal with. It has definitely changed my life in a positive way.
Anytime I have had to reach out to the Helpline, any advice they have given to me, I always take it.
If I am struggling in any way shape or form, the first thing I will do is call the Helpline when I need to.
What advice would you give to people who are thinking about using the Helpline but maybe hesitant to call?
The Helpline is there. If you have no support available, if there is nobody you can speak to, I highly recommend speaking to the Helpline.
I reached out to Helplines for various other things and I’ve found them helpful, so the Epilepsy Scotland Helpline is just another tool in the box.
Our Helpline is open to anyone who has questions about epilepsy or needs guidance to find the right support for them.
Call us on 0808 800 2200 or email contact@epilepsyscotland.org.uk