If you were out and about, and you saw somebody having an epileptic seizure, would you know what to do? According to a recent survey by Epilepsy Action, there’s a good chance the answer is no. The survey, which involved 2,000 people in the UK, found that 43% of people would have no idea how to respond to a seizure. Worse still, many people have misconceptions that may cause more harm than good.
“Many people think you should restrain someone or put something in their mouth, but that’s actually really dangerous,” says Chantal Spittles, spokesperson for Epilepsy Action. “It’s a concerning misconception that we want to put right.”
The situation is complicated by the fact that all seizures are not made alike. In actuality, there are dozens of different types of epileptic seizure, as well as other variants of seizure with a non-epileptic cause.
“People often think of tonic-clonic seizures – the common one where people fall to the floor – but you can also have absence seizures where people just look like they’re not paying attention or are zoning out,” says Spittles. “There’s a very wide range of seizures and each one has a different approach that you need to take.”
With that in mind, generalisations can be unhelpful. However, the more informed you are as a bystander, the better equipped you’ll be to help. So how can you recognise the signs of a seizure, and what steps should you take?
What is epilepsy?
For background, epilepsy is a common neurological condition affecting around 600,000 people in the UK (slightly less than 1% of the population). It can develop at any point in your life, and isn’t always lifelong – many people whose condition starts before the age of 20 will eventually ‘grow out of it’.
The causes can vary significantly. Some of the time it can develop in response to a head trauma, or can occur after the person has suffered from meningitis, a brain tumour or a stroke. In other cases, the causes are genetic. More often than not, however, it is impossible to say why the person is prone to seizures.
“Unfortunately, six out of ten people have no clear cause,” says Spittles. “People take medication usually as a first line of treatment, but it can be difficult to get the medication balance right regardless of the cause.”
In principle, anti-epileptic drugs will work for about 70% of people with epilepsy (meaning they won’t experience seizures at all). In practice, however, only around 52% of sufferers in the UK are seizure-free, largely due to problems finding the right combination of drugs.
In addition, some women do stop their medication without medical advice if they’re trying to get pregnant – definitely not a plan of action doctors recommend, as there are risks to both baby and mother from uncontrolled epilepsy. However, recent new restrictions on prescribing one epilepsy medication, sodium valproate, in pregnancy have added to some women’s concerns. The key, of course, is to have a full review of your epilepsy medication before you start trying to conceive.
A person living with epilepsy may learn to recognise their individual triggers, as well as the warning signs that a seizure is coming on. Unfortunately, there is always a risk of being caught unawares.
Types of seizure
According to the International League Against Epilepsy (ILAE), an epileptic seizure can be defined as ‘a transient occurrence of signs and/or symptoms due to excessive or synchronous neuronal activity in the brain’.
“It’s a sudden surge of electrical activity in the brain which causes a temporary disturbance in the way the brain cells talk to each other,” clarifies Spittles.
The ILAE also recently introduced a new way to group seizures, with a view to helping doctors prescribe the best treatments. Broadly, they can be categorised into ‘focal onset’ (which affect just one part of the brain), ‘generalised onset’ (which involve the whole brain) and ‘unknown onset’. They are further categorised depending on whether or not a person’s awareness is affected, and whether there are other symptoms.
Tonic-clonic seizures (once called ‘grand mal’) are one of the most prevalent. The person will fall unconscious and will often fall backwards, as their body goes stiff and begins to shake for several minutes. They may also cry out, breathe abnormally, or lose control of their bladder.
Absence seizures (once called ‘petit mal’) are much more subtle in their presentation, and can even be mistaken for a brief interlude of daydreaming. A further common category is atonic seizures, in which the person suddenly loses muscle tone, and their head and body go limp.
Non-epileptic seizures can have a range of causes, both psychological and physiological. Although they do not involve the same brain patterns as epileptic seizures, the symptoms (and recommended response) are the same.
What you can do
As Spittles explains, the most important thing a bystander can do is simply to make sure the person is safe.
“The main thing is just to assess the situation around them and check they’re not in immediate danger,” she says. “For example, you might have to cushion their head if they’re on the floor. Just stay with them till the seizure is over. If it’s a tonic-clonic seizure, once that seizure’s over you need to put them in the recovery position, but it’s very important not to restrain them.”
Although the symptoms of a tonic-clonic seizure may look scary, most of the time there’s no need to call an ambulance. However, it is advisable to do so if the seizure persists for more than five minutes. Epilepsy Action recommends timing the episode to make sure.
You should also call an ambulance if you know it’s the person’s first seizure; if they are injured; if one seizure appears to follow the other without the person regaining consciousness; if they have trouble breathing after the seizure has stopped; or you believe they require urgent medical assistance.
“This is advisable especially if you don’t know the person,” says Spittles. “If you know the person you can have a feel for how their seizures affect them and be a bit more flexible.”
Overall, though, it is simply a matter of staying calm, and offering reassurance once the seizure is over. You may be able to find further information on the person – as Spittles explains, many people with epilepsy carry some form of ID.
“That’s something you should look for if possible, because it’s such an individual condition and it will affect people in very different ways,” says Spittles. “It’s never one size fits all because of the sheer breadth of seizure types.”
This article appears on Patient