Tuesday 20 February 2018

Health Case Study: Living with epilepsy

Lorraine Lally was used to giving first aid to injured sports people, says Joy Orpen, not realising that one day, she would be the one receiving urgent treatment

Lorraine Lally
Lorraine Lally

Joy Orpen

Witnessing people having seizures can be a very frightening experience, but it's a challenge you have to rise to if you are a member of the Order of Malta.

And that's precisely what Galwegian Lorraine Lally always did when she encountered sports people who were having seizures following a head trauma. Although she found the episodes alarming, she did what she had been trained to do.

But it never crossed her mind that, one day, she would be on the other side, suffering a seizure, unaware of what was happening to her.

Lorraine traces her physical difficulties back to her premature birth 27 years ago, when she came into the world almost eight weeks before her due date. "Because of that, my brain didn't develop properly – one side is not the same size as the other," she says.

As a result, Lorraine needed to be monitored on an annual basis. When she was about seven years old, she was diagnosed with absence seizures, which only last for a few seconds.

None of that stopped her from doing her bit for her own community.

"My grandmother was religious, and did voluntary work with organisations like Simon," says Lorraine.

"So I did voluntary work, too. When I was 17, I did a youth leadership course and was then a cadet leader with the Order of Malta."

As a member of this organisation, Lorraine was obliged to attend public gatherings, including rugby and football matches, and to give first aid to injured players or spectators.

Following a law degree at Griffith College in Dublin, Lorraine did a Masters at NUI Galway. However, her hopes of doing a PhD were dashed by the arrival of the recession.

Nowadays, Lorraine works as a barrister in Dublin and she tutors law students with disabilities in NUIG. Her legal work involves family and immigrant issues, and she revels in it.

However, she has experienced pitfalls along the way. When she was 21, Lorraine had a seizure in the college library and was taken to St James's Hospital where, following an MRI scan, she learned she had suffered her first tonic-clonic seizure – in the past, this was known as a grand mal seizure.

Tonic refers to the initial rigidity of the body; clonic to the subsequent convulsions, when the muscles contract and relax rapidly.

Lorraine says she was "really lucky" because the timing of her attack meant she ended up in St James's, being treated by an exceptionally good neurologist.

She believes this first serious epileptic seizure was brought on by stress and sleep deprivation. "I don't have short days, I don't have short weeks and I don't have short years," she says. "I make the most of my time."

However, Lorraine does have to take her condition into account, especially as the medication currently on offer isn't ideal for her particular case.

"The meds don't always work for me. I've tried lots of them. One caused such severe side effects I was in hospital for a week covered in a rash – it was in my nose, my ears, my mouth, my scalp, everywhere. I've never felt so bad – I thought I was going to die," she says.

"They put me in an isolation ward. There was even a doctor sitting with me all night reading through a book of rashes, trying to identify mine. They knew what medication I was on, but they didn't get the connection between it and the rash."

The eventual diagnosis was Stevens-Johnson syndrome – a rare, serious skin disease caused by a negative reaction to medication.

Lorraine says you should always find out about possible side effects when you're starting on a new medication.

"Medication works better for some than for others," she explains. "About 70 per cent of people with epilepsy do well – I'm in the other 30 per cent."

Recently, she spent six days in the epilepsy monitoring unit in Beaumont. Consequently, it was decided to take her off her old medication and to put her on a new regimen. "It's going well now," she says.

Lorraine normally experiences about three seizures a week – most of them at night. She knows she's had one because, when she wakes, her legs and arms are aching. She may also have a headache. "It's like I've run a marathon in my sleep – I have a full-body convulsion," she explains.

But she also has them during waking hours. She once had a seizure while being driven by her father and, in her confusion, she tried to open the car door while it was moving. "My father said, 'Thank God for central locking!'" Lorraine recalls with a twinkle in her eyes.

Like many people dealing with epilepsy, she experiences 'auras'. These are sensations or feelings that can occur before seizures begin. They allow the person time to get themselves into a safe position so they don't injure themselves during the actual episode.

"It's a sense of deja vu or a feeling that something bad is happening," explains Lorraine. "There may be flashing lights as well, and that tells me I'm about to have an attack. My natural instinct is to go somewhere quiet, away from people, and just let it happen."

Over the course of the six years since her first tonic-clonic seizure, Lorraine has broken her nose several times and she's bitten her lips. She also managed to give an ex-boyfriend a black eye while having a seizure.

"He was six foot and I'm only just five foot, so it was funny," she says.

However, she admits that injury is a very real concern for her. "I worry I'll get a serious injury if I fall during a seizure," she says.

So what should we do if we encounter someone having an epileptic seizure?

"Clear the way – make space for them. Put a cushion under their head if you can, loosen their clothing and let them have the seizure. But don't ever put anything in their mouth. Once the seizure stops, put them into the recovery position. You only need to call an ambulance if the seizure lasts more than five minutes or they've injured themself," Lorraine explains.

It took Lorraine about two years to process the fact that she has epilepsy. "It's a medical condition in which lifestyle is very important. I hardly ever drink, I meditate, I try to get enough rest, while exercise and good nutrition are very, very important," she says.

Lorraine is not going to let this condition get in her way. She would love one day to work at the European Court of Human Rights in Strasbourg or at The Hague.

Watch this space.

  • European Epilepsy Day is tomorrow, February 10. For more information on Epilepsy Ireland, tel (01) 455-7500, or see www.epilepsy.ie

Irish Independent

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