Some 40,000 people in Ireland suffer from this widely misunderstood condition Treatment for epilepsy remains hugely under-funded. Dr Muiris Houston, Medical Correspondent, reports
As an abnormality with usually obvious signs, epilepsy has been described since ancient times.
Hippocrates characterised it as a disease caused by phlegm blocking the airways; the body convulsed as it struggled to free itself of the phlegm.
Given his lack of knowledge about the functioning of the body and the primacy of "humours" as the cause of illnesses at the time, such an explanation is less fanciful than we might think.
Indeed, compared with the 13th and 14th centuries, Hippocrates's understanding of epilepsy was positively scientific.
Seizures were referred to as "the falling sickness" in medieval times. Treatments involved a mishmash of folklore, sorcery and pious healing.
Mistletoe was a popular "cure" in the 14th century, and people with epilepsy were advised to recite three Pater Nosters and three Ave Marias daily for three months. St Christopher became the patron saint of epilepsy.
Even in more recent times, we have not been kind to fellow humans with recurrent seizures.
Stigma has been a huge problem in epilepsy. In the United States, people with the disease were forbidden to marry in 17 states until 1956. The last state to repeal this law only did so in 1980.
There are about 40,000 people with epilepsy in the State and the World Health Organisation (WHO) estimates that 50 million people worldwide have the disease.
Now much better understood, epilepsy is defined as a tendency to have recurrent seizures.
The brain functions normally by means of tiny electrical impulses. However, a seizure occurs when a sudden, uncontrolled discharge of this electrical activity starts in one part of the brain and spreads, either locally, leading to a focal or partial seizure, or generally, giving rise to generalised seizures.
In the most obvious form of epilepsy, the seizure gives rise to generalised convulsion affecting the whole body.
A focal seizure may give rise to a convulsion in just one part of the body. And if the abnormal electrical discharge affects a part of the brain controlling the senses, then the person may become aware of a smell or taste, but without the typical muscular convulsion.
In most cases, the cause of epilepsy is unknown and studies show the brain structure appears normal.
However, epilepsy can be caused by damage from previous infections, scars from head injuries or because of a brain tumour. It can also arise from problems relating to birth.
"There are other related disorders such as non-epileptic psychogenic [or stress] seizures and convulsive syncope," says Dr Norman Delanty, a consultant neurologist specialising in epilepsy at Dublin's Beaumont Hospital.
Convulsive syncope is a form of fainting; 10 per cent of people who faint recurrently have this.
"One of the biggest challenges we face are the 40 per cent of people with epilepsy who have refractory or difficult-to-treat seizures," Delanty says.
This is despite the greater understanding of epilepsy and a growth in treatment options.
Even for those whose seizures are controlled by modern drugs, epilepsy is a complex chronic illness.
The psychosocial impact of chronic disease has been described by British expert Dr Ann Jacoby as having an impact beyond the physical.
"In the case of an illness such as epilepsy, where the physical manifestations are transient, the psychological consequences may, with time, come to be of greater concern," she says.
"At least 60 per cent of those with refractory epilepsy will suffer from depression," Delanty notes.
He adds that the inability to predict when the next convulsion will occur leads to considerable anxiety.
Secondary social phobia - in which the person is afraid to go out and partake in a range of social activities - is relatively common.
There is still some discrimination regarding employment for those with epilepsy, according to Delanty.
And then there is the impact of the disease on driving; you must be one year free of seizures before you can be licensed to drive a car.
Despite a recognition of the wide range of problems for people with epilepsy, the Beaumont neurology unit gets by with the services of just two neuro-psychologists.
Two half-time epilepsy nurse specialists, a community epilepsy nurse and a neurophysicist complete the non-medical front-line staff available to patients.
"Because epilepsy is such a chronic and unpredictable disorder, I do not think we could provide the current level of service without key individuals like these," says Delanty.
However, he is clearly frustrated that a national neurology centre such as Beaumont does not have more resources.
"We need more epilepsy specialists and epilepsy nurse specialists. We have ongoing problems with waiting lists," he says.
It takes a shocking two and a half years to get an appointment with an epilepsy specialist in Beaumont. The waiting time for an outpatient MRI scan of the brain in the hospital is currently eight months.
And the problems in neurology are right across the State.
"There is no epilepsy nurse specialists in Galway and no neuropsychologist in Cork University Hospital," according to Delanty.
Over a year after its publication, there has been no progress in implementing a Comhairle na nOspidéal report: A Review of Neurology and Neurophysiology Services.
That report recommended the appointment of an additional four consultant neurologists to Beaumont as well as two additional posts at Cork University Hospital as a "priority".
These and other priority appointments are based on an interim target of one consultant neurologist per 150,000 population, rising eventually to one per 100,000 people.
A group of patients with a particularly pressing need are those with learning disabilities.
One-third of people with a learning disability have epilepsy and their disease can be particularly difficult to control.
In comparison to services in Britain, the resources for this group are lacking, with an urgent need for the appointment of psychiatrists with special expertise in learning disability.
"One of my goals before I retire is to help set up a residential centre about 50 miles outside Dublin for people with complex epilepsy," Delanty says.
"We could bring them into the unit and slowly change their medication in an effort to get better control of seizures and improve their quality of life."
He sees a public/private partnership as the route to this goal which, as well as a broad range of clinical staff, would facilitate vocational activities such as farming and horticulture.
Delanty would also like to explore the possibility of setting up a charitable foundation for epilepsy to encourage philanthropic support.
Meanwhile, back at the epilepsy centre, its two-bed video monitoring unit is full.
One patient has been admitted for five days because, despite outpatient tests, it is unclear whether she has epilepsy or not. Her seizures could be stress-related and the constant monitoring should yield valuable clues.
The second patient has epilepsy that cannot be controlled by medication. She is being considered for brain surgery and the video evidence is needed to confirm that the seizures are originating from a single part of the brain. If they are not, surgery is contraindicated.
Epilepsy has come a long way from the folk remedies of the Middle Ages.
Brainwave - The Irish Epilepsy Association provides information, education and counselling services. Located at 249 Crumlin Road, Dublin 12, Brainwave can be contacted by phone at: 01 455 7500, and on the web at: http://www.epilepsy.ie
Beaumont Hospital is hosting an epilepsy study day, with a focus on learning disability, for medical and allied health professionals on November 5th. For more information, tel: 01 809 2215.