Gavin has been living with epilepsy since he was 18 years old.
Here he shares the challenges he has faced, how he felt when first diagnosed with epilepsy and the impact the diagnosis has had on his mental health.
Please be aware that Gavin’s story contains him talking about suicide which may be upsetting for some people.
How did you feel when you were first diagnosed with epilepsy?
At first when I was diagnosed, within 24 hours my life completely changed.
I was so scared as to what the future would hold and if my condition would get considerably worse or would this be the worst of it, as I had heard of stories of people who have had one or two seizures and that is them for life. This was not the case for me.
I was scared as to how people would treat me from now on, maybe as some sort of alien as they didn’t know what to say or what to do.
How would my future career prospects work out? Would I be able to succeed in my main goal of becoming a musician? Would this be achievable? I wasn’t to know.
The main thing that worried me in the early days was if I would have any quality of life in my future.
Would I be bed bound for the rest of my life having seizures every other day?
I was just about to start my undergraduate degree at the Royal Conservatoire of Scotland in Glasgow, this was a new chapter in my life and just before it, I was having seizures every month.
It was very challenging both mentally and physically.
What type of seizures do you have? How does it affect you?
At first as a child, although we didn’t know it at the time, I was having absence seizures and my mum just described them as ‘funny turns’, but didn’t think much of it.
How was she to know? I got checked out when I was about 14/15 years old and got some brain scans but nothing came of it.
Still to this day, I suffer from absence seizures. When I was 18, I had my first tonic-clonic seizure.
It was a hot day in May, a Monday and I had just gotten back the day before from spending the weekend with my friends. My mum was away at work and I was home alone.
I had just passed my driving test and had just gotten my first car. I decided that I would go for a drive as we live in the lovely countryside on the west coast of Scotland. That was the last thing I remember.
When I woke up I was halfway across the driver’s seat in my car, feeling extremely dizzy and confused. I felt drunk.
This then caused me to go into the house from my car to try and find empty cans and bottles of beer as I thought I had drunk before I drove, but no, I had my first seizure, but I didn’t know that yet.
Later on, my mum came back from work, I told her what happened and we agreed I must have fainted and that was that.
Later on that day, I suddenly felt exhausted and told my mum I was going to bed, the next thing I know, I woke up and there were two paramedics surrounding me on my bed.
This felt like hours apart, but in reality, it was only 20 minutes or so.
These seizures to this day, make me feel extremely tired, and drained out of my mind, and can take sometimes nearly a full week for me to recover.
My muscles are extremely sore and if it’s really bad I struggle to even get in and out of bed and do basic tasks.
What challenges have you faced since being diagnosed with epilepsy?
The main challenges I have faced since my diagnosis has been to do with my medication.
There are so many different types of anti-seizure medications out there and it takes a while for you and your neurologist to figure out what the right formula of pills is for you.
The amount of different types of pills I’ve been on is incredible and with some, I have been left confused as to why I’m even on them. The side effects of these pills can be very nasty.
Most of them have a side effect of depression and this is something I have really struggled with, even before I was diagnosed so you can only imagine how the medication had its effect on me.
My mental health dwindled to the point where I have now been through multiple suicide attempts.
This wasn’t just because of the medication but it certainly played its part.
We always say that epilepsy is more than seizures. Do you feel this has been your experience?
Epilepsy is definitely more than seizures, it is sometimes described as a friend for life that you never asked for, a devil on one’s shoulder if you will.
I am sometimes stood waiting for a train on a platform thinking “what if?”, what if I have a seizure now? Surely that’s the end.
All these intrusive thoughts come to me day to day as with epilepsy, it is a bit like a faulty battery in your car, every time it breaks, you lose a little bit of trust.
As a musician, I have performed in concert halls around Europe in contests and concerts to a high level and these are very stressful situations to be in and stress for me is one of my triggers for a seizure so every time I’m on stage performing, I always think ‘what if?’
Something that most musicians never even have to think about.
How has it felt to go through a year seizure free?
I have gone a year seizure free before but it didn’t last after a break up in a relationship which led me to many more seizures, due to my own making.
But now that I’ve gone nearly a year and a half, I feel more energised, safe, and also just proud of what I’ve managed to do since 2018 considering the number of seizures I’ve had.
During my undergraduate degree, for the first two years, I was having one or two seizures a month and if it wasn’t for photos or videos, I can’t really remember much of that time of my life.
Now I’m happy that I am stable and can enjoy my life without constantly having a battle with my body and mind.
Saying that I still have to deal with mental health and physical issues that I’ve discussed above, but I’d rather that than have a seizure.
What would you say to others who have been recently diagnosed with epilepsy?
Don’t be harsh on yourself, it’s so easy to get annoyed as to why you’ve been landed with this condition but just like me, you will learn to cope and deal with it.
It just takes time, be patient. I like to read about people’s stories and how they have gone from their first seizure too where they are now and you can do the same.
We have launched Scotland’s first-ever national survey seeking to understand the effect epilepsy can have on the mental health of someone who has a neurological condition. To complete the survey, please click here.