'Epilepsy is a loaded word - it means my life has changed'

Sinead Matson had just dozed off in bed beside the cradle containing her two-month-old baby when a real-life nightmare began.

"I felt a cramp beginning in the toes of my right foot," she recalls.

"It steadily crept up my foot, calf and thigh.

"Suddenly I felt like someone had punched me in the face."

She screamed and blacked out. Her husband Phil came running to find his wife convulsing on a blood-stained bed.

Sinead had bitten her tongue in the throes of a tonic-clonic - or full seizure - which lasted for several minutes.

While they waited for the ambulance to arrive, a neighbour who came to the family's assistance, asked Sinead if she knew who or where she was.

"I knew all of these things," recalls the 38-year-old , "but I had no words to answer him - there was silence in my head."

In the ambulance she had two more seizures; and yet another after she arrived in hospital. Tests showed a benign brain tumour. Four days later, on October 22, 2014, the mother-of-two, who lives in Kildare, had a craniotomy, an operation to remove the growth. It left her temporarily almost paralysed on her right side and, again temporarily, affected her ability to speak. But there was more bad news:

"Epilepsy - it doesn't even look like a word, just a jumble of letters, and yet when I heard it as a diagnosis for the first time, I rejected it," says Sinead. "It is a loaded word. It means my life has changed."

Epilepsy is a neurological disorder which affects the brain and which can result in repeated seizures which happen in either a part of the brain or in both sides of the brain at once.

Sinead was now among the nearly 40,000 people, or one in 115 individuals, in Ireland who have epilepsy - with today being International Epilepsy Day, a global event to promote awareness on epilepsy around the world.

Anyone can develop the condition at any age, from very young babies to people in their sixties and seventies, but on hearing the diagnosis, she was initially convinced her doctors were wrong.

"I had just survived a craniotomy for the successful removal of a benign brain tumour; I had re-learned how to walk, use the right-hand side of my body, talk in more than nouns and verbs, think and process thoughts properly again.

"I could wiggle my toes on my right foot, for God's sake! I had survived and they had the wrong patient. Except, of course, they didn't have the wrong patient. I do have epilepsy."

Sinead was told the tumour had caused the initial seizures, and that there was a risk the operation could cause more.

"I was put on a lot of anti-seizure medication and given emergency back-up medication to stop a seizure," she says.

During a consultation with her neurologist a few months later, in January 2015, Sinead - who had been planning to begin a demanding PhD programme that same month - broke down in tears.

"I felt my life was over. My identity was wrapped up in education and in starting my PhD and in contributing to the professionalisation of early childhood education in Ireland," she recalls, adding that her plans also included travelling and having more children.

"But he [the neurologist] said 'you can do all of that! You're not the first person with epilepsy to do a PhD and you certainly won't be the last'.

"It was like he had thrown me a lifeline."

The word epilepsy, explains Peter Murphy, chief executive of Epilepsy Ireland, stands for a collection of many different forms of epilepsy which affect people in different ways.

"For some people it can quite quickly be brought under control with medication and lifestyle changes," he says.

"For others, it can involve having regular multiple seizures every day and at that level it would severely limit the patient's educational and employment prospects."

In between, he says, is a sliding scale of effects - even someone who has fully controlled epilepsy may have to deal with severe side-effects which can include mood changes, and changes in memory and concentration,

Her consultant was correct, says Sinead now. She began working on her PhD in September 2015 and regularly travels alone to India to carry out research.

"I travel abroad with my family for holidays. I work, I study, I teach and still go to concerts.

"I play with my children and can have more children if I want to."

However, her path was not a smooth one. When a check-up in June 2015 revealed the tumour had not returned, Sinead began slipping back into old, unhealthy, lifestyle habits. She quickly paid the price.

"I wasn't eating properly," she recalls. "I was drinking lots of coffee, stressing and working late into the night." Sinead adds that she was commuting, caring for two children, and was very busy at work. "I was very stressed."

One evening in June 2015, after a coffee-fuelled day during which she had eaten very little, it all started again.

Sinead had put her children to bed and was working on her laptop when she felt a cramp in her right leg.

"It moved up to my head again and I got the punch into the face again but instead of a full seizure, this time I had a pounding migraine and a rush of heat through my body. I suddenly felt like I was going to vomit."

Phil helped her take pain medication and got her to bed.

Research shows that there are certain trigger factors which make seizures more likely, including stress, missed meals and missed sleep - and Sinead now realised she would have to make significant lifestyle adjustments.

"I had to say 'no' to things," she says, adding that she also had to ensure she had a proper night's sleep and ate good food regularly.

Previously she skipped breakfast; these days she starts her day with porridge and green tea. Instead of a packet of crisps and a cup of coffee for lunch, she has soup or salad, and fruit. She has cut back on unhealthy snacking, attends yoga classes to promote mental wellbeing and ensures she gets sufficient sleep.

The reward? She has been seizure-free since that night in June 2015.

"My life has become more managed. If I have a very tiring or stressful day, I have to go to bed early; I cannot go out. I have to explain this to people," says Sinead, adding that she has discovered that many people have little real understanding of epilepsy.

"The first time the word 'epilepsy' was said to me, I could never have imagined travelling to India by myself to research something I love," she says.

"However, I now manage my daily life. I can do everything I thought I would do," she says. "Life goes on. If it wasn't for ongoing research, medication, surgeons, doctors, and nurses - life could be so much more difficult; and for all of that, I am grateful."

* For more information, see epilepsy.ie

Looking up: what lies ahead for epilepsy treatment

* Several large-scale clinical trials involving treatments for epilepsy are currently taking place in epilepsy centres in Ireland, according to Dr Colin Doherty, Consultant in Neurology and Epilepsy at St James's Hospital Dublin.

"We are currently conducting a trial of a new drug for epilepsy called Breviact, in St James's Hospital. This is an improved version of an older medication, which has fewer side-effects," says Dr Doherty, who has also been the national lead for the State Epilepsy programme since 2010, as well as being principal investigator in FutureNeuro, the new Science Foundation Ireland Research Centre for Chronic and Rare Neurological Diseases.

* A separate study into epilepsy at St James's Hospital involves the scanning of the brains of patients who have had a seizure. The objective is to determine whether the patient's brain sustained damage as a result of the seizure.

This may lead to the use of brain protection therapies in the setting of acute seizures, says Dr Doherty.

* The National Epilepsy Programme is currently working with the Government to introduce a form of cannabis treatment for epilepsy patients with extreme forms of the condition.

"In the last five to 10 years, cannabis has been recognised as a drug which may have benefits for epilepsy patients.

"Because it is so widely available recreationally, there has not been a pharmaceutical cannabis product made to a high grade up to now, but an English company has a new product of pharmaceutical grade which is currently proceeding through the European Medicines Agency approval process," explains Dr Doherty.

"While we are waiting for that, the Department of Health and the College of Physicians is partnering to get some form of cannabis oil available for patients who are in need of it."

* Research is underway at the Royal College of Surgeons in Ireland (RCSI) into micro-RNAs, small molecules which control changes in brain chemistry.

It's believed, explains Dr Doherty, that some of these molecules may be critical in changing the bio-chemistry of the brain to alter seizures.

This study aims to develop drugs which turn these "switches" on and off, says Dr Doherty, who adds that a group of researchers from several Irish universities, led by the RCSI, Trinity College, Dublin City University and NUI Galway, have joined to form FutureNeuro.

The Centre is funded to the tune of €7.8m by Science Foundation Ireland (futureneurocentre.ie) and forms an umbrella organisation for research carried out into epilepsy, among other conditions.

One research project at the RCSI being carried out under the aegis of FutureNeuro is investigating the genetic links with epilepsy in Irish patients.

"This kind of research can be considered early translational research where much more work is needed in the lab to develop new therapies," Dr Doherty explains.

* FutureNeuro researchers are also investigating the use of e-health or electronic health systems to improve epilepsy care and self- care.

"This project focuses on combining the findings of our research programmes into electronic enabled health with greater public understanding of the research," says Dr Doherty.

"It involves allowing patients more access to their health records, in electronic form, to improve both the care they receive and their understanding of their condition."

* Ongoing research into the condition is vital - currently, Dr Doherty explains, medication for epilepsy, which kills about 130 people annually in Ireland, is not always effective.

"About 30pc or 15,000 people with epilepsy do not respond to the medication and about 7,500 of these are admitted to hospital every year," he explains.

* The involvement of FutureNeuro with industry is a crucial element in progressing the research, he emphasises.

"Large-scale studies are hugely expensive, so we have partnered with a number of pharmaceutical companies with a view to carrying out large, randomised trials - on the e-health project, for example.

"We're about to start trialling wearable devices which will download information about their disease activity. This information will go straight into their electronic medical records and they will have access to it."