Epilepsy

Experiences of different seizures and auras

Seizures occur when the brain's normal electrical activity is disrupted. Generally speaking, seizures occur when brain cells are 'over-excited'. There are many different types of seizure, depending on the area of the brain affected. The disruption can affect a part of the brain (partial/focal seizures) or the whole of the brain (generalised seizures). People with epilepsy can experience any type of seizure, although most people have a regular pattern of symptoms.

Here young people talk about their experiences of seizures. Most felt that people are generally unaware of the many different types of seizures there are and felt it was important that other people knew more about the full range of epilepsy.

Partial (Focal) Seizures:

Auras
An aura - often called a warning - is a sensation which some people get just before they have a seizure. An aura is actually a simple partial seizure (see below) and can happen on its own, without progressing into another seizure.

Most people we spoke with had had auras. Many said they had an aura a few seconds before a seizure, just in time to get themselves somewhere safe, lie or sit down and warn others around them.

People described the sensation of an aura in different ways; feeling 'light-headed', 'funny' or 'unwell' and 'sick'. One woman described her auras as feeling 'away with the fairies'. 

A few people described their auras as 'hand movements' or 'twitches'. Some also described feeling frightened when having an aura and one young man compared his aura to an anxiety attack.

A few people said they'd never had an aura. This also meant they didn't know when they were going to have a seizure and couldn't get themselves somewhere safe beforehand. One man said that, even though he doesn't have auras, people close to him have learnt to recognise the signs that he is about to have a seizure. One woman said she simply doesn't know if she has auras or not, because she loses her memory for a while before a seizure.

For a couple of people the experience of auras had changed over the years.

One young man who'd had brain surgery said his auras had become 'stronger' after surgery. Another, who was otherwise seizure-free, said he still experiences the occasional aura.

Simple partial seizures
In a simple partial seizure the person remains fully conscious but gets unusual sensations of taste, smell, emotions, and twitches and jerks. Auras are also simple partial seizures.

A few people experienced simple partial seizures with involuntary arm jerks or twitches, déjà vu-sensations or a 'funny feeling' in the stomach and their 'legs going'.

Complex partial seizures
In a complex partial seizure a person's consciousness is altered and they may not remember all of what happened. They may show confused behaviour and 'automatisms' such as lip-smacking, chewing, undressing, picking up objects and wandering aimlessly. The seizure usually lasts a few minutes and to people watching it may seem that the person is fully aware of what they are doing.

Complex partial seizures often originate in the temporal lobe of the brain which is called temporal lobe epilepsy. One woman explained that sometimes her seizures cross over from the temporal lobe to other parts of the brain. When she has complex partial seizures, her limbs shake and jerk.

Some people we spoke with had had complex partial seizures several times a week, others twice a year and a few were now seizure-free.

Many people found complex partial seizures very unpleasant and scary. Often, they hadn't realised it was an epileptic seizure until they were diagnosed. One woman fell out with her housemates after she'd been 'running around screaming' in the house. She only realised later that she'd had a complex partial seizure.

After a complex partial seizure, people described feeling tired, light-headed or dizzy. Most didn't remember anything that had happened during the seizure but a couple of people felt they'd been aware of some of their thoughts during the seizure. Some people had injured themselves in a complex partial seizure if they'd knocked their head or tripped over and fallen down the stairs.

Many people felt that generally most people don't understand what complex partial seizures are and even that they are a type of epilepsy.

Generalised Seizures:

Absence seizures

Absence seizures are generalised seizures in which the person briefly loses awareness and appears to switch off. Sometimes their eyes flicker. These used to be called 'Petit Mal' seizures. Absence seizures usually last for just a few seconds.

Several people we talked to experienced absences and described them as 'black outs', 'day dreaming', 'blanks', a feeling of 'suspended animation', 'looking at stars', 'zoning out', being 'frozen' or feeling like they're in a 'trance'.

A few people experienced several absence seizures a day, for others they were much less frequent. A couple of people had no idea when and how often they had an absence because they themselves weren't aware of them. One woman had only absence seizures, but all the others who had absences experienced other seizure types as well.

The biggest effect absence seizures had on people's lives was on their (school) work. Having several absence seizures in class meant they missed out chunks of lessons. Quite often, teachers hadn't realised that the person was in fact having a seizure in class until they were diagnosed.

Many people felt that absence seizures had a much bigger social than physical impact on their lives. Some said absences could be 'embarrassing' when they happened in the middle of a conversation. They said it was important that others repeated what they'd just been talking about, however trivial it was, so they didn't feel excluded. One person pointed out that absences could sometimes be funny if she had one just before the punch line of a joke!

Most people knew straight after an absence that they'd had one, either by the way they were feeling or from other people's reactions. 

People also said that travel and taking public transport could be tricky because they could miss their stop if they had an absence just before.

One man found his absence seizures more difficult and embarrassing to handle than his tonic-clonic seizures because he's awake and aware of people's reactions after having an absence but in tonic-clonic seizures he's 'out of it' and doesn't need to face people's immediate reactions.

Many felt that most people don't know very much, if anything, about absence seizures. In school, for example, teachers might not appreciate the huge impact that such subtle absences can have. This could often lead to misunderstandings.

Tonic-clonic seizures
In a tonic-clonic seizure a person loses consciousness, becomes stiff and the limbs jerk (convulsions). These used to be called 'Grand Mal' seizures. This is the type of seizure that people most commonly link with epilepsy.

Many young people we spoke to experienced tonic-clonic seizures. For some, these were completely controlled by medication but for others they happened as often as several times a week and even several times a day.

For these people, tonic-clonic seizures lasted anything from thirty seconds to a few minutes. One woman described having a prolonged tonic-clonic seizure which lasted forty minutes and the ambulance was called (see section below on status epilepticus). A few people had wet themselves during a seizure, which had been especially difficult to cope with if it had happened in public.

People felt physically and emotionally exhausted after a seizure; tired, groggy, confused or upset, panicky and frightened. 

Some were sick afterwards, had a bad headache and many said their speech was slurred. Several felt depressed or low for a few days after a seizure. Few described feeling and appearing 'drunk' after they'd had a tonic-clonic seizure. 

How soon people recovered after a tonic-clonic seizure varied a lot. Some were fine in fifteen minutes and could carry on with what they were doing. Most slept for a few hours after a seizure and felt OK by the next day. A couple of people said it took them a few days to get back to normal after a seizure. 

Because tonic-clonic seizures involve uncontrolled jerking and people often fall to the ground, they can injure themselves. Many had bitten their tongue and got bruises on their face and body. Some had broken bones or 'smashed' their face; one man had injured his face so badly he had to have surgery. Another had dislocated his shoulder in a bad seizure and now when he has a seizure, this tends to happen again.

Young people's experiences on how to reduce risks of seizures at home, see 'Living arrangements and safety'.

Tonic and atonic seizures
Tonic and atonic seizures are also generalised seizures. In a tonic seizure, the person's body stiffens and they may fall over. Atonic seizures (or 'akinetic' seizures) are, in a way, the opposite of tonic seizures. Instead of the body going stiff, all muscle tone is suddenly lost and, if standing, the person drops to the ground (also known as drop seizures). A couple of people had atonic seizures. Both of these seizure types may lead to injury, often of the head, face or jaw because of falling.

Myoclonic seizures

Myoclonic seizures are generalised seizures which involve brief jerks of a part of or the whole body. A couple of people had had these and they usually happened early in the morning, between sleep and waking up.

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Status epilepticus
Status epilepticus is a term used to describe continuing/prolonged seizures of any type. Convulsive status epilepticus involves limb stiffening and/or limb jerking. 'Non-convulsive status' refers to a continuous or prolonged absences, atypical absences or complex partial seizure, or recurrent seizures. Status epilepticus and non-convulsive status are emergencies and require immediate medical attention. In very rare cases, status epilepticus can be fatal.

A few young people we spoke with had had one episode of status epilepticus and a couple of people had had several.

Other types of seizure
A couple of people had an 'unclassified' type of epilepsy which means that doctors could not name the type of epilepsy they had. Epilepsies are defined according to a framework which takes into account the seizure type(s) and the results of medical tests, but not all epilepsies fall within this framework. One man was told that there were only a few people in the world with his type of epilepsy.

A few people we spoke with had seizures only, or mostly, at night-time. These are called nocturnal seizures. People with nocturnal seizures said they sometimes woke up confused at night just after they'd had such a seizure. Others realised in the morning that they'd had a seizure because they weren't feeling well or because somebody else, like a parent, had noticed they were not right and suspected they'd had a night-time seizure.

Last reviewed May 2016.

Last updated May 2016.

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