I had a seizure at the age of 28 – and a tummy bug was to blame

Waking one morning at a friend’s London home, Sophie Hillyard found herself struggling with textbook symptoms of a crashing hangover: a pounding headache and waves of nausea.

This was particularly odd as the 28-year-old teacher from Slough had spent a teetotal evening with her friend Sanaa Harb, 28, who is also a teacher.

‘It didn’t make any sense — I felt dreadful, as if I’d drunk loads the night before, which I hadn’t,’ recalls Sophie. Nonetheless, she got up, showered and washed her hair, hoping it would pass.

But then Sophie leaned over to pick up a hairdryer — and the next thing she knew, she was lying on the floor, feeling dizzy.

‘The room was spinning, and my arms and legs were quaking slightly; I had no idea what had happened,’ she recalls. ‘I presumed that, for some unknown reason, I must have passed out.’

But it was more than a faint.

‘Apparently I was totally out of it. My arms and legs were jerking and my eyes had rolled back in my head,’ says Sophie, of the blackout in April this year. ‘It must have been frightening to watch.’

Afterwards, she lay on the floor, stunned and feeling too ill to process what Sanaa was telling her.

‘From what she described it sounded as though I’d suffered an epileptic fit, though there’s no family history of them.’

Sanaa’s parents called an ambulance and Sophie was taken to West Middlesex University Hospital. There, doctors discovered that what she had suffered was not an epileptic seizure but a dissociative or non-epileptic seizure (NES).

The condition, unrelated to epilepsy, causes seizures in about 13,500 people a year in the UK.

Epileptic seizures are caused by abnormal electrical activity in the brain, explains Dr Manny Bagary, a consultant epileptologist and neuropsychiatrist at Birmingham and Solihull Mental Health NHS Foundation Trust.

Non-epileptic attacks, however, tend to occur as a reflex to a physical problem such as a head injury or general illness, or a psychological concern such as stress or depression.

‘What unites these causes is that the brain thinks it is under some kind of threat. The seizure is the response, switching on a network in the brain that leads to the physical symptoms,’ he says.

Why some people react in this way to triggers is not clear.

Markus Reuber, a professor of clinical neurology at the University of Sheffield, says most dissociative seizures are like a reflex that some may be born with or develop.

‘Reflexes are the brain’s way of protecting the body. We don’t control them,’ he says, citing the automatic way you shield your face with your hand if someone kicks a ball towards you.

‘A dissociative seizure is a form of protective reflex. One theory is that the seizure might protect the body from awareness of the stress that has caused it; the person becomes dissociated — as if in a trance state — from the distressing trigger.’

Although an NES might look like an epileptic seizure to the untrained eye, there are differences, says Mark Edwards, a professor of neurology at King’s College London. ‘In a non-epileptic fit there may be more thrashing movement of the head, back and forth, and moving around of arms,’ he says. ‘With epilepsy there is more of a constant simple movement, say rhythmic jerking of arms and legs.’

Sophie first found herself struggling with textbook symptoms of a crashing hangover: a pounding headache and waves of nausea

And while epileptic seizures tend to last up to a couple of minutes, non-epileptic seizures can last seconds, minutes — even hours.

He adds that if a witness can film the event (unless the person having the seizure needs help) it can help with making a diagnosis.

In hospital, and still feeling very sick, Sophie underwent tests including an EEG (electroencephalogram), which measures the brain’s electrical signals.

‘I was so weak. When I stood up I thought I was going to fall over,’ she says. ‘I was put on a drip because I was quite dehydrated and given anti-sickness tablets.’

Although she was relieved to learn that tests didn’t suggest epilepsy, she was stunned to be diagnosed with a condition she didn’t know existed. (Doctors came to the diagnosis after urine and blood tests ruled out other causes, and also based on the description of the fit given by Sophie’s friend.)

But what actually caused her seizure was unclear.

‘The only thing they could suggest was that I’d had a stomach infection which had triggered the event. Although I’d felt absolutely fine the night before, I’d been feeling nauseous and retching earlier that week,’ she says. One problem with diagnosing non-epileptic seizures is that an EEG is only useful if carried out during the seizure, says Professor Edwards, who also works at The Wellington Hospital in London.

It is estimated that up to one adult in five attending epilepsy clinics will have NES rather than epilepsy, he adds. And being wrongly prescribed epilepsy medication is a problem — the drugs have potential side-effects including reduced concentration while long-term use is linked to premature vascular disease and osteoporosis.

And as these medications don’t have an impact on NES seizures, doctors may be inclined to increase the strength and dosage. Unlike epilepsy, there is no standard treatment for NES — the focus is on addressing the underlying psychological or physical problem. This may involve stress or lifestyle issues such as poor sleep or diet.

Learning to relax is important, adds Dr Michael Dilley, a consultant neuropsychiatrist at King’s College London, as fear of another seizure can lead to a repeat.

A 2020 study found that cognitive behavioural therapy was effective at controlling dissociative seizures. ‘The problem with non-epileptic seizures is there is often a long delay in diagnosis — not least because of misunderstanding of the condition,’ says Dr Dilley.

There is also a shortage of neuropsychiatrists, who may diagnose NES. So people with treatable conditions ‘get lost in the system’, he adds.

After being discharged, Sophie was told to stay hydrated and prescribed anti-nausea medication. Several weeks later, she is still troubled by her experience.

‘What really frightened me is that I’ve never had a seizure before and don’t really understand why I have had one,’ she says.

‘I’m wary of it happening again and doing what I can to protect myself. I drink plenty of water, I don’t skip meals and try to get a good night’s sleep.

‘I want to make people aware that if it happened to me, it can happen to anyone.’

Dr Megan Rossi is away