Terrifying reason so many people are developing epilepsy late in life

As Emma Leenders came to in an ambulance with a team of paramedics firing questions at her, she thought she was dreaming.

‘I did not know who I was or where I was and I just woke up to people saying “what’s your name, what’s your dog’s name, do you know where you are?”,’ she recalls.

It was only as her partner Chris, 50, who works in TV production, told her she’d had a seizure during the night and that he’d called an ambulance that things started to become more clear.

A confused Emma was then put through a blur of tests – after which doctors told her she had a seizure, ‘but they had no idea why’.

A year on the teacher tells the Mail: ‘I was stunned – I’d had no other signs, no seizures as a child and believed you had to be born with epilepsy. I had no idea it could come on in middle age.’

She was prescribed levetiracetam (brand name Keppra), an anti-seizure medication – but the drama didn’t end there.

Emma and Chris, who were holidaying with his 13-year-old daughter in Japan, returned to their Airbnb much later in the early hours of the morning: exhausted by what had happened, they went back to bed.

Emma recalls: ‘Chris said I had a seizure straight away and he had to again call an ambulance, but this time I was unconscious until I woke up in hospital the next day.’

She was put on stronger anti-seizure medication, phenytoin, given intravenously, and underwent further tests – ‘but I don’t remember those at all’, says Emma.

This time she was kept in hospital for five days.

Emma was prescribed levetiracetam, an anti-seizure medication, after she had a seizure during the night and was taken to hospital

Epilepsy occurs when the brain develops a ‘tendency to send recurrent and unprovoked faulty electrical signals – a bit like a sudden “electrical storm” – which can cause seizures’

‘I was shocked, scared and just wanted to get home,’ she says. ‘I was in a kind of denial. I thought I would just take the meds until I got home and then stop, as I didn’t believe I had epilepsy.’

Epilepsy occurs when the brain develops a ‘tendency to send recurrent and unprovoked faulty electrical signals – a bit like a sudden “electrical storm” – which can cause seizures’, says Dr Barbara Wysota, a consultant neurologist at University Hospitals Birmingham.

‘Depending on where that activity starts, it can cause very different symptoms: anything from a brief “blank spell” – in which people stare and appear not to be listening to you – to sudden behavioural changes associated with brief confusion, to full-body convulsions.

‘Most people hear the word “seizure” and imagine whole-body convulsions, which we call generalised tonic-clonic seizures. This is a major seizure and is where the “electrical storm” involves both sides of the brain.’

However, seizures do not always look dramatic, she adds.

‘For some people, it can be brief confusion, staring into space, a strange feeling of deja vu, sudden fear – or a brief loss of awareness for a few seconds. This can be associated with automatic movements, such as chewing or lip smacking.

‘We call these focal seizures and they involve just part of the brain. Some people don’t even realise these are seizures. Focal seizures are more likely to occur when epilepsy starts later in life.

‘The frequency of seizure episodes may vary. Some people have them every few days, every few weeks or every few months. Other patients can experience them more frequently; several times a day, or they might occur in clusters.’

Other types of seizures, such as absences – which manifest as brief staring, usually lasting only a few seconds – or myoclonic jerks (sudden jumping of arms or legs) or atonic drop seizures (sudden, unanticipated falls to the ground, which often causes injury), are more likely to start earlier in life. Those seizures also involve both sides of the brain, explains Dr Wysota.

Yet many people are unaware of these other symptoms, and those affected may not realise their ‘vague spells’ are in fact epilepsy.

Epilepsy is one of the most common neurological conditions in older adults affecting more than 160,000 people aged 65 or over in the UK. 

Emma, from Hackney, east London, had been having regular deja vu and feeling ‘disconnected’ on occasion, for a year before her major seizure – but put it down to the menopause.

‘I would feel a sense of dreamy, out-of-body experience and that I had been here before,’ she says.

‘It would last about 30 seconds to a minute. I could still talk to people and at times I would even say to people “I am having a deja vu”,’ she recalls.

‘It would happen occasionally, perhaps a couple times a month, but did not worry me at all. There were no particular triggers and I slept really well,’ adds Emma.

‘I was going through perimenopause so just put it down to that.’

But after her trip to Japan, Emma’s GP referred her to a neurologist, who ran brain scans and read the notes from the Japanese medics – and confirmed the diagnosis. Her previous ‘funny turns’ had been a form of seizure.

Emma says: ‘The neurologist explained I had two types of seizures – the tonic-clonic seizures [she’d had in Japan, where she trembled and shook in her sleep] and focal seizures, which had caused that feeling of being dreamy and sense of deja vu.’ Her medication dosages were increased.

Dr Barbara Wysota, a consultant neurologist at University Hospitals Birmingham, explains that the ‘frequency of seizure episodes may vary’ for different people

In adults – especially if it starts in midlife – epilepsy is commonly linked to previous head injury, stroke or brain tumour

In the UK, one in 100 of us live with epilepsy; around 680,000 people.

When it starts in childhood, it often has genetic causes, but in adults – especially if it starts in midlife – it is commonly linked to previous head injury, stroke or brain tumour.

‘However, in many people, no clear cause is found, which can feel frustrating,’ says Dr Wysota.

Emma was one of those people. Her neurologist could find no reason for epilepsy coming on at age 49.

She had a 48-hour EEG – an electroencephalogram, a test that records brain activity continuously over two days – as well as another brain scan.

Emma had to relinquish her driving licence (people with epilepsy are not allowed to drive), which was hard she says because ‘I enjoyed driving’.

‘Thankfully I am in London with good transport links so could still get to my job.’

(Under DVLA rules, patients who have been seizure-free for 12 months can regain their driving licence.)

Dr Wysota explains that while epilepsy is often thought of as only starting in childhood, the incidence of epilepsy rises with age.

In 2023 Claire Freemantle lost control of her Land Rover Defender in Wimbledon, south-west London, and crashed into a school picnic, killing two eight-year-olds, Nuria Sajjad and Selena Lau, and injuring 16 others. She was later diagnosed as having had an epileptic seizure with loss of consciousness at the wheel.

No charges were brought around the time, as this was not a pre-existing condition. (However, the driver has now been charged with two counts of causing death by dangerous driving. Her lawyers said she would deny all charges.)

‘There are two peak times when epilepsy is more likely to start: during childhood and in older adulthood,’ says Dr Wysota.

‘Epilepsy is one of the most common neurological conditions in older adults. It becomes increasingly common after age 40, and especially after 60.’

She explains this occurs in middle age, ‘usually because something changes in the brain over time’.

She adds: ‘Seizures may start on a background of a stroke or vascular disease in the brain. Sometimes, small strokes that the patient may not be aware of may become a trigger point for seizures.

‘Other potential causes include scarring due to previous head injury, infection, alcohol misuse, brain tumour or dementia.’

Dr Wysota adds: ‘A seizure may be the first sign that something else needs investigating, which is why it should never be ignored.’

Emma says she ‘struggled with side-effects of my medication’ and ‘was scared to be on my own in case I had a seizure’ – but that she is now ‘starting to feel more positive’

However, it usually does not come out of the blue. As Dr Wysota explains, there are signs – but people can miss them.

‘These may be brief “blank spells”, deja-vu episodes, a strange rising feeling in the stomach, sudden confusion, odd smells that aren’t there or shaking while asleep,’ she says.

‘Those symptoms may indicate focal seizures. Sometimes patients report experiencing those episodes for months before a bigger convulsive seizure occurs.’

Dr Wysota adds: ‘It’s very important to seek medical help if someone is experiencing such symptoms and to start treatment if an epilepsy diagnosis is confirmed by a specialist.

‘The treatment can be a little different if epilepsy starts later in life. The choice of antiseizure medication is often influenced by a combination of the patient’s pre-existing health conditions and other medications they’re taking.’

Emma has had one tonic-clonic seizure since her diagnosis last year, when she was on a train a few months ago.

‘I woke in an ambulance,’ she recalls. ‘Thankfully a doctor had been on the train, had timed my seizure, called 999 and got me help.’ (If a seizure lasts more than five minutes, it means it is serious and needs urgent medical attention.)

While Emma will have to live with epilepsy now, Dr Wysota explains in some cases seizures can be a one-off episode.

‘Some patients have one isolated seizure, that for some reason sends the electrical balance – for example, this might be due to electrolyte imbalance, a period of vomiting, diarrhoea and dehydration. It may also be a reaction to medication. In these cases, the diagnosis is not epilepsy.’

But if the seizure is unprovoked, especially if there is an abnormality on an MRI scan or EEG – then the chance of recurrence can be high, explains Dr Wysota.

She adds: ‘Up to 70 per cent of patients can become seizure-free with appropriate antiseizure medication.’

‘In addition to taking this medication, patients can reduce their risk of seizures by avoiding alcohol, ensuring a good night’s sleep and minimising stress.’

Finally accepting she has epilepsy has not been easy, says Emma.

Life has changed: ‘I struggled with side-effects of my medication [with low mood, memory problems and fatigue] and was scared to be on my own in case I had a seizure.

‘I was also told to no longer have baths, as I could drown, and was warned about SUDEP [sudden unexpected death in epilepsy] which can happen in sleep.

‘I have always been really independent, travelling on my own, and felt I had lost this.

‘I am starting to feel more positive as feel the medication has the seizures under control. I also attended an epilepsy support group run by The Epilepsy Society which really helped – only people with epilepsy can really understand how it feels.’