When Rupert doesn’t answer his phone, I fear he’s died in his sleep: 21 people lose their life to epilepsy every week a medical writer describes her son’s battle with terrifying seizures
Until my son had his first seizure at school aged 17, I had no idea how many people in the UK suffer from epilepsy.
It’s roughly one in 100; that’s someone in every school and workplace. I didn’t know that more than a third have seizures that cannot be controlled — or that 21 people die from epilepsy every week.
When actress Maddy Hill’s character Nancy was seen having a seizure on EastEnders recently, the response on social media was incomprehension and ridicule as people failed to understand exactly what was happening.
After that storyline aired, the charity Young Epilepsy acknowledged that sadly there is ‘a long battle ahead to achieve understanding of epilepsy’.
‘Our fear of epilepsy goes back to ancient history, when it was associated with being possessed,’ says Dr Sallie Baxendale, a consultant neuropsychologist at the Institute of Neurology in London.
Until my son had his first seizure at school aged 17, I had no idea how many people in the UK suffer from epilepsy
‘The same imagery is still used in horror films today. During a seizure, people may cry out, swear or spit or try to rip off their clothes; they may be incontinent. It’s not surprising that no one wants to talk about it.’
As the mum of a young sufferer, it feels to me as though the disease has yet to come out of the shadows.
When I got a phone call to say Rupert had collapsed in a music class, my first thought was not epilepsy but a raft of other devastating scenarios — as a journalist who specialises in medical reporting, I know that brain injury, stroke, infection and tumours can all cause seizures.
I got to the school half an hour later to find Rupert slumped in a chair, pale and confused, with blood still gushing from a two-inch gash in his chin where he’d smashed his face on the floor.
He was nauseous, exhausted and very scared; we drove in silence to A&E, where he was given an anti-emetic drug to stop him being sick, and an MRI scan, which thankfully ruled out any structural changes in his brain. Chin stitched, he was discharged with an appointment for a first seizure clinic — the National Institute for Health and Care Excellence (NICE) recommends that anyone who has had a suspected seizure should be seen by a specialist within two weeks — and then he slept for 12 hours straight.
We both felt reassured to be told some people only ever have one seizure — there is an 8 to 10 per cent lifetime risk of having one — and that the cause might never be known. It could be stress or tiredness, or the random misfiring of neurons (nerve cells) in the brain on that particular day.
But three weeks later, Rupert was in our local Starbucks revising for his exams when he collapsed again.
The friend who was with him described a pattern that has been repeated many times since. He had suddenly looked away from his laptop, stood up and started to turn around on the spot.
She called his name but although he had his eyes open, he would have been unconscious and unable to see or hear.
Moments later, he hit the floor, convulsing for three minutes.
By the time I got there, just as an ambulance arrived, a large crowd had gathered and he had his head down an indescribably filthy loo, being violently sick.
‘Hey Ma,’ he said weakly, with a grin, pulling his head out for a moment. ‘Here we go again.’
I felt frightened and confused but most of all powerless. The idea of something going so haywire in your child’s brain that it causes him to ‘prang out’ — his words — to this degree is terrifying.
‘Most of the time the neurons in our brains are communicating with each other as they should,’ says Dr Baxendale. ‘But occasionally something happens to make them fire abnormally. Surrounding neurons then join in, resulting in a seizure.
Rupert spent the first week of his first term at university in hospital. He had three seizures in a row — one in his halls of residence and two more in hospital — then another one on his way out of the building, having been discharged
‘Sometimes the cause is clear and abnormalities such as a stroke or tumours show on a brain scan. Brain infections, metabolic disorders [such as enzyme deficiencies] and a faulty immune system can also interfere with the way neurons communicate.’
But around half of patients with epilepsy, including my otherwise healthy teenager, may never know why their seizures happen.
‘Although seizures are more likely to happen when someone is stressed or sleep-deprived, most people with epilepsy cannot predict when a seizure will occur, or know what tripped the system,’ says Dr Baxendale.
‘This unpredictability is one of the most difficult things about living with epilepsy.’
Epilepsy can develop at any age but is more common in children and people over 60.
Doctors recognise three types of seizure — focal onset, generalised onset, and unknown onset — but these can manifest in many ways, making epilepsy more like a cluster of conditions.
For example, focal onset seizures start in one part of the brain but can then spread to both sides of it, with the focal onset acting as a warning. Some people experience an ‘aura’ or a strange feeling before the seizure spreads.
Generalised onset seizures involve both sides of the brain. And in seizures with unknown onset, the focus of the seizure isn’t clear.
Only 3 per cent of people with epilepsy have the photosensitive type, triggered by flashing lights — hence viewers being warned before a TV programme featuring strobe lighting or flash photography starts, for example.
Some have absence seizures — brief lapses of consciousness where they may stare into space for a few seconds, as if daydreaming, then revert to normal.
In focal impaired awareness seizures, people become confused — they may be able to hear but not understand.
And some have atonic seizures, which typically last 15 seconds or less and cause the body to become floppy and drop without warning.
Some people with epilepsy also report daily headaches, mood swings, fatigue, insomnia, and a strange feeling of detachment, not to mention the side-effects of anti-epileptic drugs, which control seizures by slowing down electrical activity — often at a cost to cognitive function. People report memory loss and a feeling of being slow or drowsy.
Following his second seizure two years ago, Rupert was referred to a neurologist and his seizures were classified as focal onset generalised tonic-clonic seizures (GTCS), which used to be called grand mal seizures — literally ‘great sickness’ in French.
They begin in one part of his brain; while this is happening he may behave oddly. He might turn round and round on the spot or stare upwards but will not be responsive.
Then, as it travels around his brain, the tonic-clonic (convulsive or shaking) seizure begins: his limbs repeatedly stiffen and jerk and he often smashes his head and face on the ground.
He was prescribed lamotrigine, which is also used as a mood stabiliser to treat bipolar disorder. It works by dampening nerve signalling in the brain, reducing the severity and frequency of seizures.
After numerous hospital admissions he has doubled and tripled his dose, but he continues to have seizures every couple of months.
Now 20 and studying philosophy at the University of Leeds, he feels epilepsy is part of his identity.
‘I’m conscious that wherever I am, I might suddenly have a seizure,’ he says. ‘It’s annoying because it interrupts what I’m doing and I feel so ill afterwards — I’m nauseous and in pain, and I need to sleep — but I don’t remember anything, so in some ways it’s worse for the people around me.’
In his case, there are no obvious triggers, though we both feel stress and lack of sleep probably play a part. He has broken his nose twice, split his lips so many times they are filled with scar tissue, and had numerous gashes and bruises. And although friends have been present when he’s had seizures and know how to respond — don’t try to hold him down, get something soft under his head, call an ambulance if he can’t stop being sick — I have never seen one.
They always happen in public places — he’s had them in airport departure lounges, cafes, bars, libraries and several times at work. He lost his summer job waiting on tables after a seizure — illegal, yes, but in practice it happens often.
Last year, the charity Epilepsy Research UK launched a powerful campaign called A Life Interrupted to highlight the disruptive impact of epilepsy and address the inequalities in research funding.
‘Epilepsy really does disrupt the narrative of your life,’ says Dr Rhys Thomas, an honorary consultant in epilepsy at the Royal Victoria Infirmary in Newcastle.
‘It is difficult to overestimate what the seizure-control medicines, and the other hurdles epilepsy throws in your way socially, do to slow you down. It can make you unconsciously reassess your life goals because the fear and anxiety over having seizures never goes away.’
Rupert loves baths but can’t have one without somebody standing outside, in case he has a seizure and drowns. He is not allowed to drive and will have to make sure he gets enough sleep and avoids stress for the rest of his life — which may limit his choice of job.
But epilepsy also ends lives. Statistics from Public Health England (PHE) show that deaths from epilepsy increased by 70 per cent from 2001 to 2014.
In 2018, PHE said people with epilepsy living in deprived areas may be at three times higher risk of death than people in wealthier areas. The charity Epilepsy Action concluded that the lack of priority given to epilepsy within the healthcare system in the UK has directly contributed to the increase in premature mortality rates.
According to the World Health Organisation, 50 million people worldwide have epilepsy. In poorer countries, 90 per cent of patients don’t get the treatment they need.
People with epilepsy are two to three times more at risk of premature death — on average they die eight years earlier — and over 20 times more at risk of sudden death than the general population.
The risk for SUDEP (sudden unexpected death in epilepsy) rises if you have generalised tonic-clonic seizures (GTCS) like Rupert, especially if they happen at night or during sleep. No one knows why, but most victims are found sleeping on their fronts.
And as the number of GTCS a person has increases, so does the risk of suddenly dying. The charity SUDEP Action says that compared with people without GTCS, those with one to two seizures a year have a five times increase in risk. Three or more seizures a year can increase the risk by up to 15 times. The SUDEP rate in people with very frequent seizures has been estimated to be between one in 100 and one in 50.
Although SUDEP is more common in people with frequent seizures, it has also occurred in people who have had very few.
Rupert spent the first week of his first term at university in hospital. He had three seizures in a row — one in his halls of residence and two more in hospital — then another one on his way out of the building, having been discharged.
I phone him every day and if he doesn’t answer I don’t think ‘Maybe he’s lost his phone’. I think ‘He’s died in his sleep’.
When I spoke to Dr Thomas, he had just come from a Zoom call with the All-Party Parliamentary Group (APPG) On Epilepsy. Present were bereaved parents who have lost children to SUDEP and desperately want to get across the message that it is important to be open with loved ones about the risk.
‘We are not always good at having these difficult discussions,’ says Dr Thomas. ‘But the gold standard if you have a family member with epilepsy is to discuss SUDEP early and often. Everyone who has convulsive seizures is at some risk. Taking medication regularly is important, but anything that impacts sleep — stress, alcohol — is a factor in seizure frequency.
‘But in more than 30 per cent of patients, we don’t know why epilepsy happens and we have no medicines to target it.’
Which brings us to fundraising. For every £1 per person spent on Parkinson’s research, just 9p is spent on epilepsy — there are 137,000 people in the UK with Parkinson’s, and more than 600,000 with epilepsy, which affects both young and older people.
According to Epilepsy Action, only 52 per cent of people with epilepsy in the UK are seizure-free, though it is estimated that with the right treatment, that figure could be 70 per cent, with half of all SUDEP deaths prevented.
‘I feel very passionate about this,’ says Dr Thomas. ‘We’re fighting stigma and misunderstanding. Our medicines are not good enough and we’re due a revolution.
‘People with epilepsy should be demanding more. More specialist nurses, more research, better drugs. We try our best but we often fail. I would love the patient voice to be angrier.’
epilepsy.org.uk
Under the microscope
Interior designer and star of Changing Rooms Laurence Llewelyn-Bowen, 56, takes our health quiz
Can you run up the stairs?
I can because I have very shallow stairs at home in the Cotswolds. One of the joys of 17th-century architecture is these shallow stairs, which meant that when ladies swooped down them in large skirts, they rippled the hem.
So rather than me being fit, my stairs are accommodating. I have a running machine and run every morning. I think it’s inelegant to admit to too much exercise, but that’s my guilty secret.
Get your five a day?
I eat healthily because I like it. I don’t have a sweet tooth, nor do I crave carbs — I’m really not a pasta or bread person. My diet is high in protein — meat and fish — as well as vegetables.
Interior designer and star of Changing Rooms Laurence Llewelyn-Bowen, 56, takes our health quiz
Ever dieted?
I have never dieted but I have constantly looked at what I eat. After all, I have an investment in tailoring and should nothing fit, it would be costly to upgrade. No idea what my weight is and I’m 6 ft tall — but only because my bootmaker makes sure that’s my height.
has the pandemic affected you?
I think we have all got a little bit more out of focus than we used to be, but I have been lucky to continue working throughout — planning my ventures and my design business. I never shuffled around the house in a dressing gown. It’s important to be reasonably well turned out, even for a Zoom call.
Any vices?
I like a glass of gin and tonic but I refuse to see it as any sort of vice. It’s refreshing, empowering and invigorating — and where most of my ideas come from.
family ailments?
My mother had multiple sclerosis; she was diagnosed in her 30s but lived into her 70s. My father, who was an orthopaedic surgeon, died of leukaemia when I was nine.
Worst illness or injury?
I very much enjoyed glandular fever when I was in my teens because it occurred at the height of my desire to be a Victorian poet. Glandular fever was as good as consumption as far as I was concerned. I have never broken a bone and I think that’s due to my father’s insistence that we children drink pints of milk every day. Must have helped my teeth, too, as I didn’t have my first filling until I was 43.
Pop any pills?
As A family, my wife Jackie and our two grown-up daughters have been taking vitamin D during the pandemic to boost immunity.
Cope well with pain?
Reasonably well — I don’t like being unwell and I think that’s because it doesn’t happen very often. I can get grouchy when ill but I don’t have huge trepidation about pain.
Is sex important?
It is important — especially now they have found a link between sex and populating the planet.
WOULD YOU Ever have plastic surgery?
I’ve always wanted a tail. Something quite swishy and foxy would suit me perfectly — otherwise no.
Tried any alternative remedies?
Not really — I did grow up in a very straightforward medical environment. My father was against anything flouncy. He wouldn’t have looked out of place on the deck of HMS Victory.
For him, you were either thoroughly unwell and expected to die or lose a leg, or you were expected to just get on with life.
Ever been depressed?
NOT really. I was a bit mopey for a couple of years after my father died. I spent weeks in my early 20s thinking I was depressed, then realised I wasn’t, so I stopped. It is a very difficult issue and awful for those seriously affected.
Hangover cure?
More booze. Irritatingly, hangovers do get worse as you get older.
What keeps you awake?
IT Sounds pretentious but I’d say creativity. I am not a very anxious person. I generally sleep well but if I wake up in the night, I get sucked into these rabbit holes about the new wallpaper collections — mostly all forgotten before I wake up again. I am very busy with new launches and my head is buzzing.
Any phobias?
Beige. I get very prickly around beige and have been known to suffer what I assumed was a panic attack when beige surroundings overwhelmed me.
Like to live for ever?
I didn’t realise I wasn’t going to. I should always read the small print, shouldn’t I?
Changing Rooms is on Channel 4 at 8pm every Wednesday.
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