Pain linked to seizure disorder

As many as 400 people die unnecessarily each year from epilepsy because of a shortage of specialists, according to experts. Campaigners are demanding an urgent overhaul of what they describe as a disgraceful system.

Stumbling out of the restaurant, Susie White, 31, tried to steady herself. All of a sudden, the world around her turned black and her legs buckled. Moments later, she found herself on the floor with no idea how she had got there.

“I’d met friends for a meal when I suddenly started feeling hot and faint,” she says. “I thought fresh air might help but by the time I slipped outside I could barely walk.

“I can remember hitting the window, then the pavement hard as I crashed. It was still early evening and I hadn’t even had a drink.”

Baffling black-outs

Unknown to Susie, the episode in the street was an alarm call. Susie had epilepsy, a condition she knew precious little about at the time.

“I presumed I’d fainted,” she says. “My GP referred me to hospital but only because my knee was sore from the fall. Blood tests to check for low iron and hormonal deficiencies were taken but nothing showed up.”

Susie is far from alone. In the UK there are almost half a million people, or 1 in 131, who are diagnosed with epilepsy – a neurological condition which causes recurrent seizures.

Epilepsy campaigners, who went to Parliament last week, feel a lack of awareness combined with a shortage of specialists are the reasons so many cases like Susie’s go undetected – as well as why so many die.

Contrary to popular belief, epilepsy can affect anyone, at any age. A person does not have to be born with the condition or have a family history to develop it. Susie’s experience is only too common, according to Dr Hannah Cock, a senior lecturer and honourary consultant neurologist at St George’s Hospital and University in London.

She says too many people die from the condition each year – some while waiting to see a specialist.

“Epilepsy is a hidden disease. It has the same prevalence of strokes but isn’t given the same attention – despite inflicting a much bigger burden on society,” she says.

“Non-specialists have a high rate of misdiagnosis and GPs are wrong in about half of cases,” she adds. “Some people are wrongly diagnosed with epilepsy when they don’t have it at all.

“The good thing about Susie’s story is that she is still alive. Too many people die each year, either from the seizures themselves, or from injuries sustained.”

For Susie, from Milton Keynes, Bucks, the incident in the street wasn’t the first time that she had blacked out without warning.

Ten years earlier, aged 15, she’d suddenly collapsed while out shopping with some friends.

“When they couldn’t bring me round an ambulance was called.

“I only remember waking up, in a hospital bed, about six hours later – even though I’d been chatting to doctors for hours apparently,” Susie explains.

“Doctors couldn’t find anything wrong and we put it down to seeing my friend have her belly button pierced, as I’m a bit squeamish.”

According to guidelines set out by the National Institute for Clinical Excellence (Nice), all people with suspected epilepsy should be seen by an specialist within two weeks.

Experts says a staggering half of all acute trusts do not even employ a specialist. And 90% of trusts have longer waiting lists than two weeks.

When Susie’s black-out episodes returned out of the blue 10 years on, she became increasingly anxious.

“I thought low blood-sugar levels were to blame and became obsessive about eating regularly after the black-out,” she explains. “I always carried a cereal bar or snack in my bag.”

Then, in February 2004, Susie fainted one evening while her husband, Paul, now 39, was away on a business trip.

“Luckily, I was going up, rather than down, the stairs when I keeled over without warning,” Susie recalls.

“I rang Mum in tears – terrified. And from then on, the attacks became more frequent.

“I knew when one was coming on as I’d start to feel shaky, hot and panicky.

“I felt so stupid going to the doctor saying: ‘I’ve fainted again. What do you think could be wrong?’ All the tests for iron levels and thyroid functions came back clear.”

The Epilepsy Action Charity president, Baroness Ford of Cunninghame, blames a lack of information about the condition for cases of epilepsy going undetected.

“The majority of trusts lack even the most basic information to allow them to design adequate services,” she says.

Meanwhile, Susie’s fainting attacks were gradually getting worse.

“I started getting what I called ‘zone-outs’,” she recalls. “I couldn’t move or speak until it passed. They would last anything from 30 seconds up to three minutes.”

Susie racked her brain trying to think of what could possibly be causing her black-outs. “I’ve always had a healthy diet but started taking extra supplements,” she says.

“I even wondered if it was claustrophobia or panic attacks.

“I started avoiding crowded places and wore layers, so I could easily cool down if I became hot and shaky. These attacks were taking over my life.”

Over the next 18 months, the zone-outs became more frequent with Susie experiencing up to three a day – and more frightening symptoms had begun to develop as well.

“When I started getting shooting pains in the back of my head, like a bolt of lightning, I became convinced I was developing a brain tumour.” Things came to a crisis in September 2005, when Susie woke in the early hours to find paramedics in her bedroom. “My husband, Paul, had woken to find me thrashing around the bed – limbs flailing,” she says. “He thought, at first, I was having a nightmare but he couldn’t wake me. Terrified, he called 999.”

Doctors at Northwick Park Hospital, London, suggested Susie ask her GP for a referral to a neurologist, the first time a specialist had been mentioned.

“After listening to my symptoms he immediately said I was displaying classic signs of temporal lobe epilepsy,” she recalls. “You could have knocked me down with a feather. I started crying – with both shock and relief that it was nothing more serious.”

Diagnosis a huge relief

A brain scan confirmed the diagnosis and Susie now takes anti-epilepsy drugs twice daily to stop the seizures.

With her epilepsy under control, she was given the go-ahead to start a family and her first baby is due in September.

“I can’t believe it took so long before I was diagnosed,” she says. “I’m completely open about my epilepsy. I don’t see it as anything to hide.“

Dr Cock hopes the epilepsy campaign will bring change and avoid a repeat of Susie’s situation. “People with epilepsy are still discriminated against and too many of them are still not getting the right treatment,” she says.

“We need more awareness, both among the public and medical profession. Hopefully, this campaign will fix that. It’s been a long time coming.”

Baroness Ford adds: “It is disgraceful that many people with epilepsy do not have regular contact with specialists and are unable to access key services. People with epilepsy deserve better.”

A Department of Health spokesperson said: “People with epilepsy now receive more information, have greater choice and control over their care.

“Many are receiving excellent care provided by dedicated multi-disciplinary teams and we are taking steps to spread this good practice and make sure these sorts of services are available to everyone.”

What to do if you’re worried

“Insist – and keep insisting – that your GP refer you to an epilepsy specialist,” says Dr Cock. Quote the NICE guidelines (find them at www.epilepsy.org.uk) and enlist the support of your MP if necessary.

For advice call Epilepsy Action’s freephone helpline on 0808 800 5050 or email helpline@epilepsy.org.uk.

For more more information on epilepsy and its symptoms, visit www.epilepsy.org.uk.