Cameron was diagnosed with epilepsy when he was a teenager. Here he shares how he feels after different kinds of seizures, the challenges he has faced, and how he managed his epilepsy at university.
How did you feel when you were first diagnosed with epilepsy?
I expected it because I had already been admitted to casualty beforehand saying I had a seizure.
There were also lots of other moments before then, smaller seizures. When I did get told I was somewhat expecting it. However, I was a bit like what happens next.
What type of seizures do you have? How does it affect you?
I’ve got juvenile myoclonic epilepsy and have three types of seizures that you get with that.
I’ve had at least one tonic-clonic. I’ve had lots of absence seizures and I’ve had over 100 myoclonic seizures.
How do you feel after these kinds of seizures?
The myoclonic jerks are normally before an absence seizure. Whenever I have an absence seizure, I am not really conscious at all in the moment.
But after it, I just continue to do what I am doing for example if I am walking. I might go in the wrong direction but I just continue to walk.
Whenever I come back around it feels like I have been teleported from somewhere else. Like I have been lost in time and just really confused.
Also, I have a sore head and feel dizzy as well. Before this kind of seizure, I feel I have a tension headache and sore head and everything else too.
What challenges have you faced since being diagnosed with epilepsy?
One time, I didn’t get a job because I have epilepsy. It wasn’t directly said to my face or anything but there was a form where if you put down that you have a disability you would be guaranteed an interview.
So, I did put down I had epilepsy, as it was one of the choices but they didn’t give me an interview. There is that discrimination there.
Also, there is the challenge of feeling like you are kind of getting somewhere with your medication or your epilepsy and you think you know what’s happening and then two or three months down the line, you feel like you are just back at square one. You just keep getting knocked back down again.
There is also not being able to live as independently as I would want to.
Like never being able to drive because my seizures were starting when I was 15/16.
Always having to use public transport and depend on that or walk places and depending on other people.
Also, not being able to socialise the same way as other people would because you don’t want to drink alcohol because of the seizure triggers that come with that. You might be missing out on potential friendships and socialising at university.
It’s just taking every moment where you feel good and not taking it for granted.
How did you manage your epilepsy but also achieve a 1st class honours in Chemical Engineering? What support did you get from your university?
It was difficult at the start because I was only recently diagnosed with epilepsy.
In some ways, it helped because I wasn’t going out drinking or socialising, it kept me focused on studying in the first year.
However, it did stop me from staying up in Glasgow and being by myself because I want people around me just in case anything did happen.
I managed it by making sure I took my medication and exercised in a safe way. Making sure my timing of exercise was all good. And sleeping long enough was a big one.
When it came to the end of my degree, the dissertation time, it got really bad.
To a point where I felt I couldn’t control my epilepsy, I was probably having jerks most weeks, for about three months, so it wasn’t great in that sense.
The university helped as best as it could but there was limited stuff that could be done about it.
Can you tell us a bit about your personal training business and how you helped someone who also has epilepsy?
I started my personal training business on the side when I was uni, which probably made uni a bit more difficult. But I certainly enjoyed it.
When I graduated last June, I continued personal training full-time.
I’ve trained 400+ clients since then through COVID, outdoors, indoors, and over Zoom. I’m a mental health and exercise coach, one of 250 in the UK.
It is something I do prioritise quite a lot looking at the deeper meanings of why people want to exercise.
Going back to that particular client who had epilepsy, at the very start we just made sure we had a good health questionnaire and made sure I understood his epilepsy the best I could and how his triggers kind of worked.
I very gradually progressed the exercise from understanding his triggers and went from there. It was a learning experience for both of us.
When he first started, he said he was having two seizures a week and just at Christmas there, we managed to get him to nine weeks without a seizure. It has helped him not only from an epilepsy standpoint but also his mental health.
What would you say to others who have been recently diagnosed with epilepsy?
It’s a lot simpler than you think it is. Simpler doesn’t mean easier.
Once you get your head around what you need to do, to make yourself safe and once you get your head around those things it will become easier and more understandable, and in the long run, you will become more resilient to epilepsy and will have a stronger mind having to deal with the struggles that epilepsy often does come with.
Because of epilepsy, I take very few things for granted. From not getting injured (or worst), the NHS, and every day I can go seizure free, I’m super thankful for everything.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at email@example.com or call 0141 427 4911.