The Ongoing Journey: Living with Epilepsy

Handmade get well cards made by Zach Dawson’s former grade 5 placement class at St. Pius X Catholic Elementary School.

March is Epilepsy Awareness Month.

Over a lifetime, 1 in 10 people will have a seizure, 1 in 16 will develop epilepsy and approximately, 1 in 100 Canadians are living with the disease.

Epilepsy, a common brain disorder characterized by the tendency to have recurring seizures, can begin at any time during a person’s life.

For Zach Dawson, his epilepsy journey began at the age of 23.

In February 2020, it was nothing out of the ordinary that Zach was home from university. His mom, Trish Dawson, remembers waking up to a strange sound and finding him in his bedroom having a tonic-clonic seizure. After calling 9-1-1 he was rushed to the Brantford General Hospital.

“We were told that one-time seizures were quite common in young adults. It was the perfect storm – university student, stressed out, high caffeine, during midterm season, lack of sleep. Hearing this at the time we had no idea that seizures were so prevalent” says Trish.

After having a second seizure while still in the ER, Zach was admitted and they performed a CT scan and MRI. He was referred to The Hamilton General Hospital Epilepsy Clinic for a neurologist consultation and was given anti-seizure medication. The entire referral process took 11 months.

“It was a difficult time to go through, especially during COVID-19. It’s hard to get information without seeing a neurologist and sometimes it can take months to get a phone call appointment. You’re on this brand new medication with side effects and you don’t know who to talk to about it” says Trish.

His initial electroencephalogram (EEG) test came back normal but after having two more seizures in October of that same year they did a sleep induced EEG where he stayed up all night and drank caffeine. Those results, among others, showed abnormalities.

“I was really hoping that this was a one-time thing but then it happened again and they officially diagnosed me with epilepsy and I realized this could be a whole life issue. So I had to come to terms with that as well as the changes of being on medication for the rest of my life and having my license revoked” says Zach.

Anti-seizure medication doesn’t stop epilepsy or seizures but it can help to manage them. Zach is now on his fourth combination of anti-seizure medications which he takes twice a day. He had allergic reactions to two prior drugs and an adverse reaction to another. Using medication that works for you in combination with knowing and understanding signs is important to managing seizures.

“For me pressure changes that are caused by the weather make me feel off. Throughout my experiences I now know that on days where I don’t feel well I need to take it easy and make sure I’m not doing anything excessive. It’s about knowing your triggers and knowing your body” says Zach.

With so many forms of epilepsy and so many different kind of seizures each with their own different forms of triggers, it becomes increasingly important to know what works best for you and the steps you can take to manage them. This often includes being around someone when you aren’t feeling well and managing stress, sleep patterns and a balanced nutrition to keep brain activity level.

“It’s a really prevalent condition with so much stigma and not much awareness. We didn’t know anything about it or anyone who had seizures or epilepsy. And then you start talking about Zach’s story and you hear about other people having them in university, or they only had one, or they were on medication for a couple years and then they were fine. You start hearing all these other stories and you really start to realize how many people are affected by seizures” says Trish.

It is estimated that 150,000 people are diagnosed with epilepsy each year and an estimated 50 million people around the world have been diagnosed. These numbers do not include other seizure disorders that may be caused by other issues. This means that a lot more awareness, education, research and preventative measures are needed to support those with epilepsy.

After just getting his license back and doing well on medication for just over a year and a half, Zach recently suffered from another seizure. The current wait time for a new referral could be between 22-24 months according to the Hamilton General Epilepsy Clinic phone message.

“That’s just devastating to hear if you are the patient and have no one to talk to. Imagine something traumatic like having a seizure for the first time and now you’re on medication with nobody to talk to about it. We do feel very fortunate that Zach does have a neurologist and her physician assistant to call with questions when they arise” says Trish.

At the moment the cause is unknown for 50% of cases of people diagnosed with epilepsy and there is no cure.

“My advice as a parent is to just keep advocating for your child. That’s one of the biggest problems – being heard and getting the right information. Epilepsy is just not out there like other awareness campaigns. By sharing our story we feel like we are at least doing our part” says Trish.

Zach is currently completing his last placement at St. Pius X Catholic Elementary School before graduating from teacher’s college next month.

“It’s an ongoing battle but it’s not the end of the world, it could be worse. Once you accept it it’s not as bad as it actually seems. I’m fortunate to have a good support system behind me. Just remember you’re not alone so try not to be intimidated by it. It’s intimidating at first but don’t let it define you” says Zach.

Zach and Trish would also like to thank BCHS for being instrumental in both their care and support along this journey. They are greatly appreciative of Dr. Ballyk, Dr. George, ER Physicians Dr. Colborne, Dr. Benoit and Dr. Irvine, as well as the Medical Imaging Department.

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Photo: Handmade get well cards made by Zach Dawson’s former grade 5 placement class at St. Pius X Catholic Elementary School.