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Imagine the scenario: a loved one has just been diagnosed with epilepsy, a much-misunderstood brain condition that can manifest in unpredictable ways.

You are probably feeling concerned, frightened and almost certainly powerless.

In fact, there are numerous ways to support those around us living with epilepsy, whether it’s a friend, relative, or a stranger, from creating a safe space to offering reassurance and simply asking questions.

What are epileptic seizures?

Epilepsy is a condition that affects the brain.

In those of us without the condition, electrical activity happens constantly as networks of brain cells send messages to each other to control all our thoughts, movements, senses and body functions.

However, when there is a sudden, intense burst of electrical activity in the brain, the messages between cells get mixed up and the result is an epileptic seizure.

The way a seizure manifests depends on which area of the brain is involved, and it doesn’t always result in the loss of consciousness; seizures range from strange, uncontrollable feelings or movements to falling to the floor and shaking.

How to recognise a seizure

Tonic-clonic seizures, perhaps the most commonly known seizure where a person stiffens, drops to the floor and begins to shake, is one of roughly 40 different types of seizure. Each have their own set of symptoms.

Being able to distinguish between the different types of seizures can help you to choose the right course of action.

For Sarah

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro’s parenting columnist and a valued member of our first-person and opinion desk.

Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.

With support from Sarah’s family, Metro is fundraising for two very important charities: SUDEP Action and Epilepsy Action.

From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.

Some of the most common types of seizure are:

• Tonic-clonic (formerly known as Grand Mal): the person stiffens, falls to the floor and starts to shake or jerk.

• Absence seizures (formerly known as Petit Mal seizures): the person abandons what they are doing and appears to ‘switch off’; this usually lasts for a few seconds.

• Myoclonic seizures (also referred to as ‘myoclonic jerks’): the person has sudden, short jerks that can affect some or all of their body. The jerking can range from very mild – like a twitch – to very forceful. They usually last a few seconds, but some people have them consecutively in clusters.

• Focal seizures: a seizure that begins in one side of the brain. The person may stay fully aware, or may lose awareness. They may experience movements. Additional symptoms may also include things like changes in emotions, thinking and sensations.

• Tonic seizures: if a tonic seizure starts in both sides of the brain, all the person’s muscles tighten and their body stiffens, and they may fall to the floor. If a tonic seizure starts in one side of the brain, their muscles tighten in just one area of the body.

• Atonic seizures (also referred to as ‘drop attacks’): usually, the person’s muscles will go limp and they fall, sometimes resulting in injuries. Alternatively, their head may drop forward or they might sag at the knees. Atonic seizures are usually very short.

There are two types of non-epileptic seizure: febrile, which is related to a high temperature in children and dissociative, which can mimic epileptic seizures but are not caused by electrical activity in the brain.

How to help someone having a seizure

If you suspect someone may be having a tonic-clonic or a tonic seizure, Epilepsy Action recommends following ‘CARE’:

C – Comfort. Cushion their head with something soft to protect them from injury and keep them comfortable
A – Action. Time the seizure, and clear anything that could be harmful out of the way. Check if the person has a medical ID or bracelet with more information.
R – Reassure. When the seizure has stopped, place them in the recovery position, offer reassurance and stay with them as they come round.
E – Emergency. Call 999 if the seizure continues for over five minutes, the person is badly injured, another seizure starts immediately, the person has trouble breathing after the seizure or has never had one before.

For other types of seizures, such as Absence, Myoclonic and Atonic:

• Guide them out of harm’s way (especially if they’re having repeated absences)

• Stay with them, and be calm and reassuring.

• Explain what they may have missed, what’s happened or where they are if necessary.

• Help to get them emergency medical care if they are injured, or to seek ongoing care if it’s their first seizure.

Remaining calm is important. Depending on seizure type, many people with epilepsy remain aware of their surroundings even as they seize, so continuing to talk to them, keeping your voice neutral and reassuring, can help a loved one or stranger to feel safe throughout.

While some people recover quickly after a seizure, others can feel disorientated and take time to feel better. If you’re able, stay with the person post-seizure. If they are able to communicate, use the ‘four Ws’ to check their awareness: who they are, what happened, when, and where they are.

Help them to get into a safe, comfortable place (especially if they have had a seizure in a public place) and offer to call a friend, relative, or additional medical aid if necessary.

How to help care for a loved one living with epilepsy

Being diagnosed with epilepsy can be lonely at any time or stage in life – even more so considering that for 50% of people diagnosed with the condition, there is no known cause.

To offer support, start by asking about your loved one’s care plan. This will have more information about their condition, their treatment and how to help in the event of a seizure, and will give you the basic details on their needs.

You can also offer to be their emergency contact. This might mean adding your details to an epilepsy ID card or being highlighted as their emergency contact in their smartphone. This usually involves having information about your loved one’s diagnosis, requirements and any medication, so it’s important to stay up-to-date.

Epilepsy Action offers a free seizure diary to help people track and manage their condition. Helping to fill this in, or review it with your loved one, will give you a better idea of the frequency of their seizures and help them to take proactive steps in managing their condition.

You can undertake some epilepsy awareness training. This can be done online, and Epilepsy Action also offers training designed for the workplace.

Finally, simply listen and offer your support. Understanding that epilepsy can be a complex and life-changing condition while standing by their side can be invaluable.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

Share your views in the comments below.

‘I am really sorry because you are a young man and this is a life limiting condition.’

After months of waiting for answers, the neurologist delivered them with crushing clarity.

It was October 2024, and my husband Andrew had just been diagnosed with motor neurone disease (MND) aged 51 – which affects your brain and spinal cord. The condition causes muscle weakness and gradual paralysis, making walking, talking, swallowing and eventually breathing impossible.

The doctor’s words didn’t feel real. I thought he’d got it wrong. We’d been reassured in a previous appointment that it was unlikely to be MND. Andrew was fit and healthy, so I was sure he could survive.

‘Don’t look up the life expectancy’ was the doctor’s first advice – so, of course, we immediately did.

We read that the average MND patient lives for about two to three years, and that there is no cure.

I’ve faced adversity in my life – I fled the Bosnian war growing up – but nothing prepares you for a diagnosis like this. Our family bubble had been burst.

I met Andrew online in 2006. There was an immediate connection between us from our first date in London’s Hyde Park, despite my exam-like questions about shared interests and whether he wanted marriage and kids.

Fortunately, he did. We were married within 18 months, and renovated a fairytale Georgian house in Hampshire, where we raised our two children in a joyous world of long walks, music and art.

Things changed in July last year, when Andrew noticed muscles twitching in his limbs; the spasms spread to his whole body within a few weeks.

At first, we were worried but didn’t catastrophise. We knew MND was a possibility, but it was the worst of many. Andrew joined the waiting list to see an NHS neurologist, but with a waiting list of months and his spasms getting worse he decided to book a private appointment.

Here, he was told it was unlikely he had MND, as he was showing no signs of Bulbar Palsy, a type of MND that primarily affects the tongue and can be spotted easily as it causes tongue weakness. Although Andrew did suffer from tiredness and mobility problems – his ankle was very weak, making it difficult to walk long distances.

But Andrew’s NHS appointment in October made it clear this wasn’t the case. He had MND and he was going to die.

We tried to stay upbeat, but started hitting barriers straight away. The biggest source of hope for MND patients is that cases caused by a faulty SOD1 gene could be treated. However, this is very rare; just 2% of people have this type of MND.

On the day Andrew was diagnosed, he had a blood test to check whether he was a member of the 2% club, but in January we were told his blood sample had been lost.

He now has to wait until May to find out if there’s any hope, leaving us no choice but to tell the children, aged 12 and 14.

We’d put off telling them for as long as possible, but we reached a point where Andrew couldn’t even go for a walk. We made up reasons for why, like saying ‘Daddy has a lot of work’, but there is a point at which you can’t keep making excuses.

It was the hardest thing we’ve ever had to do.

The kids sat on the sofa and Andrew talked them through how his ankle was getting weak, and this was part of a bigger problem. We all cried.

Our daughter said, ‘But what would be the point of life without you?’

Our son was also upset but wanted to know how this would affect Daddy’s salary, which was met with both laughter and explanations.

His question was a good one. My husband’s disease is a health problem, but it’s also a life problem. Every aspect of our lives has been upended, including our finances.

I’m a guitar teacher but also spend a lot of time looking after the children, so Andrew has always been the breadwinner. As an NHS consultant psychiatrist, he’s always been well paid and we rely on his income.

But when he was diagnosed, Andrew was advised to retire immediately instead of taking sick leave. He refused to. His life insurance is also refusing to pay out, claiming he could still recover from this incurable disease.

It’s a baffling decision – we’re all hopeful a cure can be found, but it’s not here yet so there’s no excuse for them to be so optimistic.

With Andrew unable to work and me too busy to work properly alongside looking after him and the kids, we’re struggling to pay our mortgage and will probably have to downsize.

I’ve reached out to charities for help to mixed effect. Our local hospice has been brilliant and will provide palliative care when needed, and an MND charity gave us a grant to pay for a family holiday.

But there’s not enough being done to find a treatment or cure.

This wouldn’t be acceptable with any other disease, so why should it be tolerated by families like mine whose lives are being destroyed?

5,000 people have MND in the UK at any one time. That’s 5,000 people who may be feeling invisible, vulnerable, and let down and essentially left for dead.

We need to break the taboo around MND and find a cure – now.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

Share your views in the comments below.