Hi, I’m Matt. I have battled epilepsy since the age of 5. I live with my girlfriend and our two golden retrievers and work in marketing and partnerships for a tech start-up. In my spare time I love to play golf and try to be as active as possible.
Matt’s epilepsy story
At the age of 5, I had a seizure in a parking lot, this led to my epilepsy diagnosis and the beginning of my epilepsy journey. My parents rushed me to hospital and the doctors established it was epilepsy. I was immediately put on medications and remained seizure free until I was 20 years old.
Then I had a seizure while driving, I pulled into the parking lot and thought I hit the brake but I actually hit the gas - I put it down as a one-off and continued to drive. I was living on my own while at San Diego State University, school was getting harder and from then I started to have seizures routinely.
I was in denial and didn't tell anyone. I would run into bathrooms and hide my seizures because I didn't want to change my life. I went to an engagement party in 2014, I had a seizure which my parents saw, they could guess that it had been happening for a while.
In summer of 2014 I started seeing an epileptologist at UCLA, in the hospital they did an EEG and an MRi. I was in the hospital for six days and had eleven seizures, but they couldn't see what they needed to. A muscle blocks the EEG view of what's going on, so they can't see where the seizure is happening.
What is the latest progress on your epilepsy journey?
Currently I experience three to five seizures a week. They typically last between 20-40 seconds and I’ll often have an aura 5-15 seconds before, so I can prepare myself. My auras feel like an anxiety build up and my heart rate raises.
Before coming to terms with my diagnosis, I thought I could fight it. I had hospital stays in 2015 and 2016 to establish my treatment solution. But on both occasions my seizures happened after the technician had finished their day. On the second stay I took Benadryll to go to sleep and experienced a generalized seizure. I’m currently on 3 medications.
Experiences of epilepsy discrimination
I’ve had a couple of pivotal events. Once I was boarding a plane, after scanning my ticket I had a seizure. People are unsure what to do but I'm usually able to explain what's happening. I kept saying I don’t need a paramedic, he said I needed the pilots approval to get on the plane. The pilot came out and thankfully said he was comfortable with me flying. The person in front was a nurse, she said I could sit with her if I needed help. It was pretty embarrassing and it highlighted to me how important it is for people to have more education about epilepsy
Our guide: Travelling with epilepsy
Another situation happened on New Years Eve. In the bar I had a seizure, the bartender thought I was drunk and kicked us out. I showed my medical ID bracelet but he wouldn't listen to me. I didn't want to drop this. I decided to work this up the chain, I was able to get hold of the hospitality group in Denver and had help from the Epilepsy Foundation of Colorado to explain the situation.
Seizure first aid should be required in the hospitality sector. The General Manager of the group understood, but COVID hit and they lost their employees. From a bad situation - it was a step in the right direction. I want to help the next person.
I think there’s a lack of knowledge and awareness. If I say ‘seizure’ to someone on the street, they'll think of a tonic clonic seizure, because that's what is dramatized on tv and the movies.
Do you think it’s harder to speak about epilepsy as a man?
Not personally. It's just speaking about it in general. It's something I buried deep down, I didn't want to deal with it. Being ok with who you are and ok. When I was dating, I’d bring it up straight away - if they aren't fine with it then that's their loss.
Read more: Talking about men and epilepsy
How do you find tracking with the Epsy App?
Previously I refused to track my condition but Epsy is awesome. I love the app and what the team is doing, the user interface is really good, there's so much to do with it. The community and the content is great, the more we hear of stories from people like us, the better we can relate and come to terms with it. From a tracking standpoint, the Epsy app is really good as you can narrow things down. I don't experience many triggers except stress and sleep.
Learn more: What are some common seizure triggers?
What’s your message to other people with epilepsy?
It's ok to live with epilepsy, it isn't the end of the world. Something I'm still trying to learn about is leaning on my support network. You have people in your life who can support you, from my experience it’s a terrible idea to not speak about it or hide it. It's still something I struggle with but I know I have people I can rely on now.
Check out: How to find epilepsy support groups
