What is epilepsy? Its causes, treatment, triggers and seizures, how it affects the body, and the story of one mother who had no warning signals

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One in 10 people have at least one seizure in their lifetime, according to the American Academy of Neurology. Around 50 million people globally are estimated to live with epilepsy, making it one of the most common neurological diseases in the world, according to the World Health Organization. But, of those, 70 per cent could live seizure-free if they were properly diagnosed and treated – like Frances Charters.

The mother of three and founding head of a school in Tanzania was 28 when she suffered her first seizure – with no warning signals, and no apparent reason for it. There was no history of epilepsy in the family, nor had she recently hurt her head.

There are lots of causes of epilepsy, including a head injury, genetics, viral or bacterial infections, and metabolic disorders. Seizures could result from your immune system turning on you – or they could occur for a completely unknown reason. The prevalence of epilepsy in Hong Kong is about 1 per cent of the general population, or 60,000 to 70,000 cases, says Dr Richard Chang Shek-kwan, honorary assistant professor in neurology at the University of Hong Kong.

Charters’ initial seizures were diagnosed as the consequence of malaria or a viral infection. But the cause proved to be structural: the casing around the wiring in her brain is thinner than normal, and apparently always had been.

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Frances Charters.

But why then were her first seizures as an adult, and not years before? Her doctors believe they were brought on by a severe lack of sleep, stress and essentially not looking after herself, she says.

“People of all ages develop the disease,” Chang says. “However, there are two peaks among age groups: one in childhood and teenage years, and at that stage of life the most common causes are genetics or birth injury. The other peak is among the elderly, and its causes include stroke and degenerative diseases such as Alzheimer’s disease.”

So, at nearly 30, Charters’ experience is less common but, as Chang says, it is a common misconception that epilepsy happens mostly in childhood.

So what triggers a seizure and what happens in the brain during one?

A seizure occurs from an abnormal discharge of brainwaves. “Our brains constantly create brain waves. These are minute electrical discharges,” Chang says. “In normal people, these waves are harmonious and even. However, in people who suffer epilepsy, the brain outputs waveforms which are chaotic and can result in seizures.”

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Chaotic brainwaves can result in a seizure. Photo: Getty Images

This can happen in one small part of the brain and last just seconds, or it can spread right across the brain and keep going longer, for minutes. This burst of erratic brain energy scrambles messages, which is why seizures are often accompanied by uncontrollable movement and changes in behaviour.

These can be very distressing for the sufferer, who can feel disoriented and exhausted after the event, and can result in accidents.

“What if I have a seizure when I’m driving and my kids are in the car?” Charter asks rhetorically. “What if one of my kids sees me having a seizure?” They can be frightening to witness.

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Dr Richard Chang, honorary assistant professor in neurology at the University of Hong Kong.

Charters’ first seizure was a “tonic-clonic”. This type of seizure, which is also called a convulsion, and used to be called grand-mal from the French “great illness”, is what most people think of when they hear the word “seizure”.

The tonic phase comes first: muscles stiffen, air is forced past vocal cords which can cause a cry or groan, there will be loss of consciousness and likely a fall to the floor, and the sufferer may bite their tongue or the inside of their cheek.

Then comes the clonic phase: limbs begin to jerk, a person may start to turn blue if breathing is an issue, and there may be loss of bladder or bowel control as they begin to relax. Consciousness returns slowly. Seizures of this type usually last one to three minutes.

Life is life and it is to be lived, rather than feared. I think that’s the message: find your own way to manage whatever it is as best you can

Frances Charters

Petit mal (“little sickness”) seizures, called absence seizures today, are less serious than tonic-clonic seizures. They present as lapses in awareness – so are often put down to daydreaming to begin with, and sometimes aren’t diagnosed for months in children. These generally last only a few seconds.

Seizures aren’t just dangerous because their sudden and unpredictable onset could put a sufferer at risk physically, such as from a fall, traffic accident or even drowning, Chang says. “If the seizure doesn’t stop, it can result in a condition called status epilepticus, which requires ICU care.” Status epilepticus is a seizure that lasts longer than five minutes, or multiple seizures without recovery between attacks.

The worst outcome of a seizure is abbreviated as SUDEP: sudden unexpected death in epilepsy patients. Some scientists think death could be from irregular heartbeats caused by the abnormal brain discharges.

Excellent treatment is available that can help sufferers manage their conditions and lead normal lives.

“About 70 per cent of patients can be managed reasonably by one or more drugs,” Chang says. Charters is among them; she takes an anticonvulsant medication called lamotrigine twice a day. When she started taking it after her first seizures, she stopped driving for 18 months, and did not drink alcohol.

But an especially unlucky 30 per cent of sufferers have drug-resistant epilepsy, for which medication doesn’t work reliably. In such cases, patients continue to have seizures no matter how well they comply with their medication instructions, Chang says.

Some cases can be treated surgically, if the source of abnormal discharges in the brain can be located and removed. That can completely cure the patient in some cases. Other options, such as implanting stimulators, can alleviate the seizure frequency, Chang says. Some patients find that the ketogenic diet – originally designed to help people with the disease – can be helpful.

There has been “an exponential increase” in the number of drugs that can help to control seizures in the past two decades, Chang says, but none is outstanding in efficacy. They prevent seizures but do not reverse the cause of epilepsy, just as drugs for diabetes control blood sugar but don’t cure the condition. As a result, the proportion of drug-resistant epilepsy patients has remained about the same for decades.

Epilepsy surgery is the major treatment gap in Hong Kong, Chang says, because the city “has a lack of expertise or patient knowledge”.

Charters understands her seizure triggers well now. “I am far more aware of what it actually means to take care of oneself, and it doesn’t include weekly visits to the spa or a month of juicing as a diet – it means spending time with my kids and genuinely not thinking about work when I’m with them.

“I exercise regularly. I do my best to get a good night’s sleep and I eat healthily. I take my medication daily and without fail. I see my neurosurgeon annually and have regular tests to check my lamotrigine levels.

“Life is life and it is to be lived, rather than feared. I think that’s the message: find your own way to manage whatever it is as best you can and then learn to live with it, rather than live around it. Follow medical advice, get second opinions and don’t be scared to lean on others when you can’t do it all on your own.”

She has been seizure-free for nine years.

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