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. 

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