Despite epilepsy affecting 35,000 people in Ireland,it remains ataboo area that is very under-resourced.Nicole Matthews reports
There are 35,000 people in Ireland with epilepsy, making it as common as diabetes. However, while there is constant information about healthy diets and exercise to reduce the risks of diabetes, epilepsy is still a taboo area that is severely under-resourced in Ireland, according to those working in the field.
Epilepsy is a complex neurological condition which can manifest itself in varying forms and often an underlying cause cannot be found.
Geraldine Dunne, national information officer of Brainwave, which is the Irish Epilepsy Association, says there are two types of epilepsy: generalised and localised.
"People with generalised epilepsy can get seizures known as 'tonic clonic' or absences, which are staring spells.
"Both involve loss of consciousness as both hemispheres of the brain are involved," she says.
"The other form of epilepsy is partial [ localised] and the most common form of this is complex partial, where a person may be confused and behave inappropriately.
"Simple partial is where the person is fully conscious and gets sensations such as a metallic taste in the mouth, crawling on the skin or disorientation," says Dunne.
Dr Bryan Lynch, paediatric neurologist at Temple Street Children's Hospital, Dublin, says the majority of epilepsy manifests itself in childhood.
"If you look at lifelong epilepsy, most of it occurs within the first 10 years of a child's life with a range of seizures that is more varied than in adults," says Lynch.
Picking up on the signs is not easy because unless a child has seizures, the symptoms may be more subtle.
"It's difficult to tell epileptic signs in children as often they are misread, but a child who wakes up groggy, having drooled or bit their tongue in their sleep, or has staring spells or is falling behind in school could be potential signs," says Lynch.
It is also difficult to predict what can trigger an epileptic episode, as each person will have individual triggers.
Generally, alcohol, sleep deprivation and skipping meals are thought to be triggers. Some patients believe stripes on shirts and strobe lights can also trigger an attack.
Currently, medication keeps epilepsy under control for about 70 per cent of people. Severe forms of epilepsy that medication cannot control are known as refractory epilepsy.
Dr Norman Delanty, consultant neurologist and director of epilepsy services at Beaumont Hospital, Dublin, says the options available to patients with refractory epilepsy are surgery or implanting a vagus nerve stimulator.
"For surgery, a patient is assessed for suitability with inpatient videoing, brainwave testing, MRI scans and neuropsychological testing.
"Then we hold a multidisciplinary meeting and generally 60 per cent of patients are suitable for surgery with a 70-80 per cent success rate," says Delanty.
For those not suitable for surgery, a vagus nerve stimulator, similar to a pacemaker, is implanted into the chest wall and programmed to emit electrical signals to the brain. This can be successful.
However, a downside is that doctors donot know if it will work until it is fitted.
"I am quick to point out to patients that the vagus nerve stimulator is not a cure but a palliative procedure which decreases seizures by 50 per cent for half of all patients," says Delanty.
Other non-invasive methods recommended to reduce seizures include the ketogenic diet, which is a low-carb, high- fat diet.
Lynch points out, however, that it is difficult to keep children on this diet.
Suzanne Keily, clinical nurse specialist at Temple Street Children's Hospital, says parents can take additional measures to guard against night seizures.
"The Irish Epilepsy Association sells non-smother pillows so if a child buries their head into their pillow during a seizure, they can still breathe," she says.
There is also a new alarm system available whereby a sheet of material is placed under the mattress which monitors temperature, movement and respiration.
"If any of these become abnormal, an alarm goes off, the parents are phoned and if there is no response an ambulance is called," says Keily.
Measures which combat stress are also recommended, but should be seen as complementary rather than as an alternative to treatment.
"With aromatherapy oils or herbs, always double check before using them, as some can counter the effects, such as evening primrose oil, which we do not recommend for women with epilepsy," says Dunne.
There are 17 publicly appointed adult neurologists in Ireland, which averages one consultant per 2,059 patients. Waiting lists are currently two years for assessment for someone who has had their first seizure.
Delanty says this makes it very difficult to treat patients efficiently.
"The problem lies with access to neurological and epilepsy care; there are simply not enough neurologists or specialised staff.
"It's a disgrace, we desperately need more colleagues, which is held back by lack of HSE funding," says Delanty.
Brainwave is holding its annual conference this Saturday, September 30th at the Hilton Hotel in Dublin.
For further details call 01 4557500 or log on to www.epilepsy.ie.