Invisible shutdown tough to live with

PUBLISHED : Tuesday, 22 November, 2011, 12:00am
UPDATED : Tuesday, 22 November, 2011, 12:00am


One moment, 15-year-old Laura Ferrington was in her friend's bedroom the morning after a sleepover, happily chatting with her friend; the next, she found herself on her back, looking up at paramedics leaning over her.

Disoriented, confused and scared, Ferrington could make out the worried faces of her friend and her parents as the paramedics carried her out of the room. But she had no memory of what happened between the conversation and the paramedics' arrival.

A chaotic whirl of events followed as she was whisked to hospital, where doctors ran tests and ordered scans.

Ferrington found out that while talking with her friend, she had suddenly collapsed mid-conversation. Her body then jerked and thrashed about in a grand mal seizure, a type of epileptic fit.

Several months of tests and three more seizures later, doctors diagnosed her with epilepsy. The diagnosis came as a shock to Ferrington and her parents. She had never known anyone with epilepsy, and even today, about 17 years later, Ferrington has yet to see anyone have a seizure.

More frustratingly, doctors were unable to offer her an explanation as to why she was suffering from epilepsy. Despite the slew of computed tomography (CT) scans and electroencephalograms (EEG) that she underwent over the years, doctors could find nothing wrong and said her scans were all normal. Her diagnosis was largely based on her experiencing repeated seizures.

But a pattern did start to emerge. Ferrington's seizures tended to occur once a month and were linked to her monthly menstrual cycle. They also tended to take place in the morning, which meant that she was often home when they occurred. They usually lasted about three to four minutes.

Ferrington has no recollection of the few minutes before, during and after each seizure, and typically remains a little dazed for about 15 to 20 minutes after the seizure stops.

Although Ferrington was given the only available medication at the time - Epilim - the drug failed to keep the monthly seizures at bay.

But she refused to be held back by her condition. She continued to pursue her studies and social life and, mysteriously, the seizures stopped after she turned 20.

But they returned just as suddenly when she was 26 and about to move to Hong Kong with Richard, the man who became her husband.

The first time he witnessed her having a fit was in their Hong Kong home. He heard a strange sounding scream from Ferrington as the sudden muscle contractions forced the air out of her lungs. He turned around in time to see her fall face forward on to their dog's bed.

Although Ferrington was lucky to have her fall cushioned by the dog's bed that day, it doesn't always happen like that. One of the greatest dangers that people with epilepsy face is the risk of injury when they are gripped by a seizure.

Earlier this year, Ferrington was out walking the dog by herself when a seizure struck. She fell face first onto the pavement and knocked out all her front teeth and broke her jaw. She is undergoing a year's worth of surgery and treatment to repair the damage.

Sometimes Ferrington will come to with a black eye or covered in bruises. 'I seem to be constantly at the osteopath because of back problems,' she says.

The couple have learned to watch for warning signs of an impending seizure. As the fits often happen near her period, Ferrington is especially alert during that time. She avoids alcohol and tries to get enough sleep.

Sometimes before a seizure, she will have trouble concentrating and keeping pace with a conversation, and at other times, her limbs might involuntarily jerk. Ferrington will then stay indoors or somewhere she cannot hurt herself. But at other times, there is no warning.

While Ferrington and Richard take living with epilepsy in their stride, there are some questions.

After four years of marriage and at age 32, Ferrington has thought about starting a family. Although her seizures have worsened in the past few years, her neurologist in Hong Kong started her on new anti-epileptic drugs, which have worked well. After a year on the medication, she has had only two seizures in the past six months.

Unfortunately, there is not much data about how her medication will affect an unborn child, and she is concerned about the risk of deformities. According to the US-based Epilepsy Foundation, for babies whose mothers take seizure medication, the risk of birth defects is 4 to 8 per cent, compared with 2 to 3 per cent for all babies. It can also deprive the babies of oxygen and increase the risk of miscarriage and stillbirth.

Ferrington is also worried about falls during advanced pregnancy, but she and Richard maintain an open, positive attitude towards living with epilepsy.

Richard's advice: 'If you live with someone who suffers from seizures, learn to read the signals and try not to make a big deal of it. The actual situation [during the seizure] is stressful, but it doesn't last long.'