‘A mental blackout’: 17-year-old Ontario boy describes living with epilepsy

Samuel Camilleri has been living with epilepsy for the past 10 years.

“I was seven years old and it sort of came to my parents at first cause they started to notice I was staring into space more often,” Samuel told Global News Sunday. “So I guess it tipped them off about something that was wrong.”

At first his seizures were very sedated, or what is referred to as absent seizures where he can be seen as unresponsive, as if he is staring off into space.

But since then, the seizures have changed.

READ MORE: Family explains challenges handling their son’s epilepsy diagnosis

Samuel suffers from clonic/grand mal seizures, complex partial seizures, simple partial and drop seizures.

Life can be very difficult and often frustrating for the Ontario family.

“It’s been really hard over the years.,” his mother Sara Camilleri told Global News.

“Samuel was diagnosed when he was seven … I had a strange incident at the kitchen table. I called his name and he did not look up. As a parent you are thinking he is just not listening. I walked closer and I continued to call his name and there was nothing there. There was no response … I had no idea that seizures weren’t just convulsing, that’s what everyone thinks of about epilepsy, and it turned out he had absent seizures, so that’s when it started.”

Tweet This Click to share quote on Twitter: "Samuel was diagnosed when he was seven … I had a strange incident at the kitchen table. I called his name and he did not look up. As a parent you are thinking he is just not listening. I walked closer and I continued to call his name and there was nothing there. There was no response … I had no idea that seizures weren't just convulsing, that's what everyone thinks of about epilepsy, and it turned out he had absent seizures, so that's when it started."

The seizures have made him very dependent on his family, and often frustrated he cannot participate in regular teenage activities like driving.

READ MORE: Pediatric epilepsy program sees quality of care improve

In fact, in order for Samuel to get his license he has to not have a seizure for around six months. But Samuel has seizures almost once a week.

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They can be so severe, he is exhausted by the time it is over.

“It’s kind of like a mental blackout. You don’t remember everything that happens when you have a seizure,” Samuel said. “I have had people tell me my eyes look into the back of my head, sometimes spit comes out of my mouth – there’s a whole bunch of different things that go on.”

Sara said he can fall into an incredibly deep sleep where he does not even move because he is so exhausted.

“I have heard people describe a seizure, especially if it’s a large seizure like a tonic conic seizure, like running a marathon. Their heart is racing and they are really physically and mentally exhausted afterwards … it really puts your life on hold because you need to recover” she said.

READ MORE: Mom captures daughter’s seizures to show parents the reality of infantile spasms

The Camilleri family have been working together for the past 10 years to ensure they’re well educated and informed about Samuel’s condition. But they are doing more than just educating themselves. They are sharing Samuel’s story to help educate others about epilepsy, the different types, and what you can do to help.

According to the Canadian Epilepsy Alliance, around 260 thousand Canadians have epilepsy and the age range can be as young as an infant to someone over 65 years old.

The seizures can start at any point in a person’s lifetime and they can vary from mild to severe.

In Samuel’s case, his seizures escalated as he got older.

“With the introduction of a third medication, he is at about one major seizure a week, which means sometimes he might have two to three, or sometimes he might not have one,” Sara said. “It’s very unpredictable. You never know when it’s going to happen.”

Samuel was almost hit by a car twice, has fallen off his bike, and he almost drowned, but fortunately his family was close by to pull him to safety.

READ MORE: $500k donation to LHSC results in provincial-first in brain surgery

Sara advises that anyone who encounters someone having a seizure, the best thing to do is stay with them.

“Make sure they are safe,” she said. “If they are standing and it looks like they are going to fall, you intervene and help them gently get to the floor. If they are near a chair, help them into the chair … don’t do anything to their mouth. They are not going to swallow their tongue, they are not going to bite their tongue, they will be fine. Just be with them. Be a support and let them guide your response afterward … it’s really important to know the triggers.

“The triggers for everyone can be different. For some people it’s flashing lights, for some people it’s fatigue, stress or sleep deprivation. For Samuel he is very sensitive to sound so he wears sound cancelling headphones to cope with noises at school, at the mall — things that would trigger a seizure.”

Tweet This Click to share quote on Twitter: "The triggers for everyone can be different. For some people it's flashing lights, for some people it's fatigue, stress or sleep deprivation. For Samuel he is very sensitive to sound so he wears sound cancelling headphones to cope with noises at school, at the mall — things that would trigger a seizure."

Sara also warns to not restrain someone having a seizure, as it could cause injury to their arms and legs.

For Samuel, his focus is to finish high school and hopefully gain his independence as he works with his doctors and family to help control his seizures.

The Canadian Epilepsy Alliance has some tips on what you can do if you encounter someone having a seizure:

1) STAY CALM

• Most often, a seizure will run its course and end naturally within a few minutes.

2) TIME IT

Call 911 if:

• the seizure lasts more than 5 minutes
• the seizure repeats without full recovery between seizures
• the person is pregnant or has diabetes
• the person is injured from the seizure
• the seizure occurs in water
• you are not sure if the person has epilepsy

3) PROTECT FROM INJURY

• Move sharp objects away.
• If the person falls to the ground, roll them on their side when it is safe to do so.
• Place something soft under their head.
• If the person wanders during their seizure, stay by their side and gently steer them away from danger.
• When the seizure ends, provide reassurance and stay with the person if they are confused.