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'I had an epileptic seizure when I was on a date - when I woke up she was gone'

Today is International Epilepsy Day. Lorraine Lally and Oliver Kilmartin tell Kirsty Blake Knox what life is like for those living with the condition

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Oliver Kilmartin says someone once threw ‘holy water’ on him when he was having a seizure

Oliver Kilmartin says someone once threw ‘holy water’ on him when he was having a seizure

Lorraine Lally from Galway was diagnosed when she was eight and a half

Lorraine Lally from Galway was diagnosed when she was eight and a half

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Oliver Kilmartin says someone once threw ‘holy water’ on him when he was having a seizure

When he was 11, Oliver Kilmartin was blindsided by one of his peers.

He was tackled, lifted into the air and dropped head first onto a tarmac yard.

"I landed face down and was knocked unconscious for 15 minutes," Oliver said.

Around a fortnight later, Oliver was walking down a flight of stairs at home when he experienced his first epileptic seizure.

"My head started turning around, I had a full seizure and woke up in hospital," he said.

Oliver (24), a law student in UCD, believes the trauma he sustained as a school boy resulted in his epilepsy.

His doctors agree that it could have been a result of that distressing incident or, perhaps, as a consequence of having meningitis when he was a child.

Either way, Oliver, from Booterstown in Dublin, has lived with the neurological disorder since he was 11.

A life with epilepsy is challenging. There are the seizures, the time lapses, the memory loss, and complex and costly treatment options.

There is also a huge amount of misunderstanding and myth surrounding the neurological disorder.

This is surprising given its prevalence; approximately 50 million people live with epilepsy globally, according to the World Health Organisation.

In Ireland there are currently 40,000 people living with it.

Epilepsy, a neurological disorder set off by a disruption of the brain's electrical activity, manifests itself differently from person to person. There are over 40 different types of epileptic seizure and these vary in intensity, duration, and the area of the brain affected.

Oliver suffers from Grand Mal seizures which result in a loss of consciousness and violent muscle contractions. He is on daily medication to prevent them.

"I haven't had a seizure in a couple of years but there is a huge lack of understanding," he said.

"People make assumptions, they often think that all epilepsy is photosensitive and that's not the case. I once had someone ask if lunar activity affected my epilepsy. I was like 'I'm not a bloody werewolf!'"

Oftentimes people have no idea how to respond when they see someone in a state of convulsion, and panic.

"I once had a seizure while I was on a date," Oliver said. "When I woke up I was on the pavement, and she had walked off and left".

On another occasion, someone threw holy water over him. If they occur while on night's out, people tend to assume he simply has had one too many. "Security guards can think the worst and manhandle you," he said.

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Epilepsy myth: Oliver Kilmartin from Dublin says people wrongly assume he has had too much to drink

Epilepsy myth: Oliver Kilmartin from Dublin says people wrongly assume he has had too much to drink

Epilepsy myth: Oliver Kilmartin from Dublin says people wrongly assume he has had too much to drink

Old wives' tales and medical myths surrounding epilepsy complicate things even further, and can result in well meaning people doing stupid things.

For example, a common myth is the belief that putting a spoon in someone's mouth during a fit will prevent them from swallowing their own tongue.

Swallowing your tongue is physically impossible (a piece of tissue called the frenulum linguae keeps it firmly in place), and misinformed good Samaritans can often end up inflicting serious damage.

"Once someone put their hand in my mouth, when I bit their finger, they replaced it with their mobile phone," Oliver said.

Predictably, this had disastrous consequences.

"The screen cracked and I had shards of glass in my gums and cracked teeth," he said. "When I woke up, the person asked if I could pay for their phone to be fixed."

This experience is not unique to Oliver; many people living with epilepsy have similar war stories.

'A bus driver put a piece of wood in my mouth to stop my seizure' ­- Lorraine

Lorraine Lally (33) from Galway was traveling on a late bus home when she suffered a seizure.

"I woke up and I was lying in the aisle and my jaw felt like it was broken," she said.

"The bus driver had put a piece of wood in my mouth, where he got the wood I have no idea. He could have broken my teeth but he was delighted with himself."

Restraining people and holding them down, or placing objects in their mouths are never good ideas.

Instead, those helping should guide the person having the seizure into a recovery position, cushion their head, stay with them until the episode ends, and time the length of the seizure.

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Lorraine Lally from Galway was diagnosed when she was eight and a half

Lorraine Lally from Galway was diagnosed when she was eight and a half

Lorraine Lally from Galway was diagnosed when she was eight and a half

"And don't worry about them biting their own tongue," Lorraine said. "I have bit my tongue 15,000 times and it is still there and it's still working".

As a child Lorraine was frequently admitted to hospital with severe migraines.

She was eventual diagnosed with epilepsy when she was eight-and-a-half, following an MRI and an Electroencephalogram scan (which measures the electrical activity in the brain).

Doctors believe her premature birth may be the reason she has the disorder.

Lorraine suffers from a 'double whammy of seizures' - Clonic Tonic and Focal Onset seizures.

The former is a full body seizure and extremely physically taxing, while the latter tends to be shorter in duration and the electrical disturbance is limited to a specific area of one cerebral hemisphere.

"When most people think of epilepsy they think of the extreme falling to the ground seizures, but it isn't always that identifiable," she explains.

Focal Onset seizures present in much more subdued way; the individual can appear to be in a dream-like state.

This can make the condition difficult to identify in children. It is easy for teachers and parents to assume the child is 'spacey', or has 'drifted off,' when in reality they are having an epileptic fit.

"When you are having a partial seizure,it can come across as dazed and confused," Lorraine explains.

She described Tonic Clonic as a more 'traditional seizure'.

"Tonic clonic is very draining; you drop to the floor, you lose consciousness and your arms and legs shake," Lorraine said.

"You have no memory of the seizures. I have loads in my sleep, but I wouldn't know until the morning. Then when I get up, my legs are cramping and it feels like I have run a marathon, or I have an injury and I know I had a seizure.

"I've cracked ribs in my sleep, fallen down the side of the bed, and given a former boyfriend a black eye while having seizures in my sleep."

Lorraine takes 15 medications daily to reduce down the possibility of seizures. Around 70pc of people with epilepsy will not have seizures while taking medication.

But the quantity and type of medication can vary during your life.

Oliver Kilmartin said during his teenage years growth spurts, and hormonal changes had an impact on the efficiency of the his prescribed medication.

Lifestyle choices are also hugely important: sleep deprivation, stress, or excessive consumption of alcohol can trigger an epileptic fit.

Both Oliver and Lorraine want to end the stigma and prejudice around epilepsy.

"In the workplace, I know people have had promotions taken away from them because of their epilepsy," Oliver said.

He is keen to stress that while epilepsy is a disability it is not a debility. He thinks those with epilepsy should be offered better support by the state and understanding by the general public.

Lorraine agrees. "I know a lot of people with epilepsy who can't sustain employment. You wouldn't treat someone with diabetes this way so why is it different for epilepsy?"

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Lorraine Lally says placing a spoon in someone's mouth when they are having a seizure is dangerous

Lorraine Lally says placing a spoon in someone's mouth when they are having a seizure is dangerous

Lorraine Lally says placing a spoon in someone's mouth when they are having a seizure is dangerous

Lorraine is self employed and works as a barrister in Dublin's Four Courts for half the week.

She moved to Dublin when she was 17 to study law and has been practising for the past ten years.

"The biggest misconception about epilepsy is that people living with it cannot function," she said.

"We can drive cars, have babies, go to college and travel on our own," she said.

She encourages those living with epilepsy to also practise self acceptance.

As a teenager, she carried a lot of frustration and anger about her diagnosis.

"When I was younger I felt angry and kept asking 'why is this happening to me?' but you have to accept it to move forward, and be positive. It's part of who you are. "

Check out epilepsy.ie for more information.

The facts

⬤ Epilepsy is a neurological disorder set off by a disruption of the brain's electrical activity.

⬤ It is characterized by unpredictable seizures. There are over 40 different types of epileptic seizure, some are contained and can hardly be noticed, while others are disabling.

⬤ Many things can trigger a seizure including sleep deprivation, stress, excessive consumption of alcohol, over exertion or being inactive, emotional distress and irregular eating habits.

⬤ In Ireland 40,000 people live with epilepsy, it can affect people at any age.

⬤ Illness, disease and trauma to the brain can result in epilepsy, but in half of cases there is no known cause.

⬤ If you witness a seizure do not try and restrain the person or place anything in their mouth. Guide them into a recovery position, cushion their head, stay with them and time the seizure.

Health & Living