Sophie Hillyard struggled with the classic signs of a bad hangover when she awoke one morning at a friend’s house in London: a pounding headache and waves of nausea.
This was particularly strange because the Slough teacher, 28, and her teacher friend, 28, Sanaa Harb, had spent the previous night without a drop of alcohol.
In Sophie’s words, “It made no sense. I felt awful, like I’d had a lot to drink the night before, which I hadn’t.” She got up nonetheless, had a shower, and washed her hair in the hopes that it would go away.
But then Sophie leaned over to grab a hairdryer – and before she knew it, she was on the floor feeling dizzy.
‘The room was spinning and my arms and legs were shaking a little; I had no idea what had happened,? she recalls. “I assumed I had passed out for some unknown reason.”
Sophie Hillyard, 28, (pictured) had a dissociative or non-epileptic seizure (NES) ? and a stomach flu was to blame
But it was more than fainting.
?Apparently I absolutely loved it. My arms and legs jerked and my eyes rolled back in my head,” says Sophie about the blackout in April this year. “It must have been terrifying to watch.”
Then she lay on the floor, stunned and too sick to process what Sanaa told her.
How to react when someone has a seizure
Epilepsy Specialist Dr Manny Bagary says:
- Make sure the person is safe – put something under their head, clear space around them and let the attack happen. Don’t put anything in their mouth; do not give them water to drink.
- Don’t let them down. Talk reassuringly.
- See if they are wearing a wristband with instructions on what to do.
- If it happens in public and the person is a stranger, wait a minute before calling an ambulance in case the seizure stops.
- Once the seizure is over, place the person in the recovery position to keep the airway open.
- Stay with them until they are fully recovered or under paramedics.
“From what she described, it sounded like I’d had an epileptic seizure, although there’s no family history of it.”
Sanaa’s parents called an ambulance and Sophie was taken to West Middlesex University Hospital. There, doctors discovered that she had not had an epileptic seizure, but a dissociative or non-epileptic seizure (NES).
The condition, which is unrelated to epilepsy, causes seizures in around 13,500 people a year in the UK.
Seizures are caused by abnormal electrical activity in the brain, explains Dr Manny Bagary, an epileptologist and neuropsychiatrist at the Birmingham and Solihull Mental Health NHS Foundation Trust.
However, non-epileptic seizures often 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 they are threatened in some way. The attack is the response, switching on a network in the brain that leads to the physical symptoms,” he says.
Why some people respond to triggers in this way 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 can’t control them,” he says, referring to the automatic way you shield your face with your hand when someone kicks a ball at you.
‘A dissociative attack is a form of protective reflex. One theory is that the attack could protect the body from awareness of the stress it has caused; the person becomes dissociated – as if in a trance – from the disturbing trigger.’
While an NES may 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 seizure, there may be more thumping of the head, back and forth, and moving of the arms,” ??he says. ‘In epilepsy there is more of a constant simple movement, say rhythmic pulling of arms and legs.’
Sophie first struggled with textbook symptoms of a crushing hangover: pounding headache and waves of nausea
And while epileptic seizures usually last a few minutes, non-epileptic seizures can last seconds, minutes, or even hours.
He adds that if a witness can film the event (unless the person with the seizure needs help), it can help make a diagnosis.
At the hospital, still very ill, Sophie underwent tests including an EEG (electroencephalogram), which measures the brain’s electrical signals.
What’s in a name?
The origin of disorders with quirky names
This week: Police chop
Commonly known as plantar fasciitis, it was first referred to as policeman’s heel because it was a problem for cops walking at their pace.
“The plantar fascia?the thick tendon on the underside of the heel, which acts as a shock absorber?becomes inflamed and painful when overworked by prolonged walking or periods on your feet,” says Kumar Kunasingam, foot and ankle orthopedic surgeon at Croydon Health Services NHS Trust.
‘I also see it in people who are somewhat overweight and sedentary. The other group are sporty people.’
To get it under control, try heel drops: Stand with your heel over the edge of a low step, then raise and lower to stretch the calf muscles. Rolling a frozen water bottle under your foot can relieve inflammation; insoles and gel pads help soften the blow to the heel when walking. To avoid this, stretch daily to keep the leg muscles supple.
‘I was so weak. When I got up, I thought I was going to fall over,” she says. ‘I was given an IV because I was quite dehydrated and I was given pills for nausea.’
While she was relieved to learn the tests showed no epilepsy, she was stunned to be diagnosed with a condition she didn’t know existed. (Doctors made the diagnosis after urine and blood tests ruled out other causes, and also based on the description of the attack given by Sophie’s friend.)
But what triggered her attack was unclear.
?All they could suggest was that I had a stomach infection that caused the event. Although I had felt fine the night before, earlier that week I felt nauseous and gagging,? she says. One problem with diagnosing non-epileptic seizures is that an EEG is only useful if it’s performed during the seizure, says Professor Edwards, who also works at Wellington Hospital in London.
It is estimated that one adult in five epilepsy clinics will have NES instead of epilepsy, he adds. And misprescribed epilepsy medications are a problem ? the drugs have potential side effects, including impaired concentration, while long-term use has been linked to premature vascular disease and osteoporosis.
And since these drugs don’t affect NES seizures, doctors may be tempted 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 be related to stress or lifestyle issues, such as poor sleep or diet.
Learning to relax is important, adds Dr Michael Dilley, consultant neuropsychiatrist at King’s College London, because fear of another attack can lead to a recurrence.
A 2020 study found that cognitive behavioral therapy was effective in managing dissociative seizures. ‘The problem with non-epileptic seizures is that diagnosis is often delayed, not least because the condition is misunderstood,’ says Dr Dilley.
There is also a shortage of neuropsychiatrists who can diagnose NES. So people with treatable conditions “get lost in the system,” he adds.
After being released from the hospital, Sophie was told to stay hydrated and prescribed anti-nausea medication. Several weeks later, she is still troubled by her experience.
“What really scared me is that I’ve never had a seizure before and don’t really understand why I had one,” she says.
?I am wary of it happening again and doing what I can to protect myself. I drink a lot of water, don’t skip meals and try to sleep well.
“I want to make people aware that if it happens to me, it can happen to anyone.”
Dr. Megan Rossi is gone
I had a seizure at the age of 28 – and a tummy bug was to blame