'I found out I had driven into a pillar at a hotel'
Lindsay Sheridan's 'absences' were diagnosed as epilepsy. Surgery is offering hope
THIRTY-year-old IT recruitment consultant Lindsay Sheridan had a feeling that something had happened as she was leaving a car park on her way home after a particularly busy day.
She had been delivering corporate Christmas gifts to a hotel on her way home and was aware of hearing a loud noise as she was leaving, but was confused.
It had been a hectic 24 hours. Lindsay had put a lot of effort into preparing presentations for her clients. It was a stressful time and now she was feeling very tired. When she arrived home, she told her flatmate how she was feeling and went straight to bed.
Lindsay remembers now that earlier that day, a colleague had expressed concern about her behaviour just ahead of one of their client meetings. "As we walked in to the boardroom, my colleague asked me what had happened?" Lindsay recalls. "I don't know," she replied, and shrugged it off.
The next morning though, when she noticed that her car's front number plate was missing, she was alarmed and went to see her GP.
"I had been having episodes before that, but I didn't know what they were. It was just a dream-like sequence or something that happened every now and again. I know it sounds crazy, but I just wasn't sure what was happening," she says. "I found out that I had driven into a pillar at the hotel, which caused the damage."
The GP quickly diagnosed that she had epilepsy and said she wouldn't be driving home.This condition affects 40,000 Irish people who may get seizures or fall into a trance and can cause injury to themselves or others.
Like 40 per cent of sufferers, Lindsay experiences complex partial seizures that can involve blacking out as often as 12 times a day. These are often accompanied by uncoordinated hand and mouth movements. "When I come out I'm usually very confused and cannot remember what happened. The tiredness can be like chronic jet lag; like taking a flight to New Zealand and coming straight back," she explains.
She now recognises the signs that pre-empt her seizures. "I can get heightened memory recall; a very strong sense of déjà vu or a sense of being in a daydream. Other people get smells and tastes," Lindsay says.
Since her diagnosis, she has been on a variety of different drugs with varying dosages, coupled with visits to neurologists. Like most epilepsy sufferers, self-management is key to controlling the condition for Lindsay.
Reading her patterns of the disease and adjusting personal behaviours are essential, she says.
Epilepsy drugs may have many side effects. Lindsay's medications have caused her hallucinations and severe sleepiness. But, after four years, her condition stabilised and she was seizure-free and back driving again. Then she became pregnant.
Taking epilepsy medication during pregnancy is problematic. Mother and child are at increased risk of complications at birth and there can be problems in the behavioural and cognitive development of the child. It is very important that when a person who has epilepsy is planning to become pregnant, or is pregnant, they discuss their situation and their medications with their doctor.
When baby Joe was born four years ago, everything was fine – except Lindsay's condition worsened. After two years seizure-free, she was experiencing regular incidents and was off the road again.
She heard about the National Clinical Programme for Epilepsy, a joint initiative of the Royal College of Physicians of Ireland and the Health Service Executive, and led by Dr Colin Doherty, a Consultant Neurologist and Epileptologist at St James's Hospital Dublin. The programme, which began three years ago, works with acute hospitals and primary care to make expert care and supports available in local communities to help patients with epilepsy self-manage their condition, reducing the frequency of hospital visits.
The Programme has facilitated the recruitment of additional Advanced Nurse Practitioners or Clinical Nurse Specialists who will work with primary care staff and GPs to manage patients with stable epilepsy conditions in their own local environment.
This is delivered through outreach clinics with support from the regional centres. A number of these outreach clinics are already up and running, with more planned over the next two to three years. This is good for patients as they do not have to make the journey to hospital as frequently.
The outreach services use an Epilepsy Electronic Patient Record system to ensure continuity of care between primary care and hospital-based services. "Real-time access to patients' charts in an electronic form means I can share information with the patients and other care givers, including the GP, and this can be done immediately. Compared to before, there were often 24-hour delays and sometimes charts could be lost, so it's a major benefit of the programme," says Dr Doherty.
The programme has also radically reduced the waiting time for patients to see a specialist from around six months to four weeks through a network of Rapid-Access Seizure Clinics (RASC). This means that patients like Lindsay can get expert advice on how to manage their condition within a few hours by phone or by email.
"There are only about 10 high-level experts in epilepsy in the State so we cannot sustain an expert service by relying on consultants all the time. The nursing and electronic supports means that consultants are more available for face-to-face consultation with patients when they need it," says Dr Doherty.
Lindsay has been availing of many of these services and rates the access to information quickly as a particularly important advance.
"I just can't compare it to before. I was ringing a receptionist to get an appointment that could take three months to arrange. And when you were eventually in with the consultant, you might only get nine minutes.
"I don't want to be critical. I was public and private at different hospitals and that was just the system. But it's not like that now," insists Lindsay.
She emphasises that she now feels she is getting a service in the proper sense of the word. "There is so much value added in the service I get now. There's a lot of fear with epilepsy because you change drugs a lot and they may have strong side effects. So, for instance, I'm on a new one at the moment and I feel a bit different on it. Now I can email Margaret [her nurse specialist] or even phone her and get a response in a couple of hours. And if I need to see someone, I can get an appointment within two weeks at the rapid access clinic.
"It has been absolutely super in giving me peace of mind .I just didn't get this in my previous engagement. This service is second to none."
In January this year, Lindsay was referred to and then evaluated at the state-of-the-art epilepsy monitoring unit at Beaumont Hospital – the national Epilepsy Surgery Centre – where a high-level inpatient video-monitoring resource has recently been upgraded and is now available for the most complex epilepsy cases.
The unit features a digital hub for multi-angle video EEG monitoring and is staffed 24-hours a day; a similar unit has just opened at Cork University Hospital and will be linked by a virtual network to the Dublin facility.
Lindsay stayed at this centre for a week during which time her movements and brainwave activity were monitored 24 hours a day.
Following an extensive discussion of her case amongst the multidisciplinary team, Lindsay was identified as one of the around five per cent of epilepsy sufferers in Ireland whose condition could be potentially "cured" through surgery. Her operation is due to take place this summer.
In the meantime, she will continue her career as a Principal IT recruitment consultant while managing her condition. She is lucky to have great support from her husband Stuart and sister Lorna and says others with epilepsy shouldn't be shy about asking for help.
"If the operation's a success, it would mean at least six weeks of recuperation and the possibility of being seizure-free forever," she says. It could also mean that one-year-old Harry could, like his brother Joe, know what it means to have a healthy mother who is driving.
Rapid access clinics have begun in St James's Hospital, Beaumont Hospital, Cork University Hospital and Connolly Hospital, and one is due to come online in Tallaght shortly.
The Daughters of Charity in Clonsilla, Holles St, the Rotunda and St Marys, Drumcar, Co Louth, provide an outreach clinic for chronic disease management of epilepsy and Cheeverstown intellectual disability centre in Templeogue is due start a clinic this summer. The National Clinical Programme for Epilepsy is one of 24 National Clinical Care programmes that are joint initiatives of the Royal College of Physicians of Ireland and the HSE. Details about regional epilepsy centres are available from GPs.
What is Epilepsy?
Epilepsy is a neurological disorder caused by abnormal electrical activity in the brain that can trigger recurring seizures. Anyone can develop epilepsy and it can begin at any age. Epilepsy can be acquired from a brain injury, stroke or brain infection but for most people there is no identified cause and it is not linked to a family history. Up to 40,000 people in Ireland have this condition.
Health & Living