Epilepsy

Early symptoms of epilepsy and first seizures

Epilepsy is the most common neurological condition (affecting the brain) in the world affecting an estimated 50 million people worldwide. In the UK, around 600,000 people in the UK have a diagnosis of epilepsy (The Joint Epilepsy Council, December 2011).

'Epilepsy' is defined as a tendency to have recurrent seizures. Seizures happen when the brain's normal electrical activity is disrupted. In this section we'll only talk about epileptic seizures, although other types of seizures, not caused by epilepsy, also exist.

“Epilepsy is not a single condition. There are over 40 different types of epilepsy consisting of at least 29 syndromes and a further 12 or so clinically distinct groups defined by the specific cause or underlying cause.” (The Joint Epilepsy Council, December 2011).

Here young people talk about the symptoms and the first few seizures they experienced before they were diagnosed with epilepsy. People we spoke with had their first seizures at different ages. For most, seizures started in their teens, for a few they began in childhood, or in their early 20s.

Symptoms

Only a few people we spoke with recalled having any symptoms before their first seizure. These included fainting, headaches, vomiting, and one young woman described repeatedly losing the sensation in her arm. 

Another woman had had frequent febrile convulsions when she was a child and felt that these could have been linked to her epilepsy. Febrile convulsions occur in young children when their body temperature rises rapidly. This is not epilepsy but a child who's had them may be slightly more likely to have epilepsy later in life.

Gradual build-up to the first seizures

Even though most young people didn't describe any symptoms as such, for many there was a slow and gradual build-up to their first 'full-blown' seizure, or before they thought something was actually wrong. For some, the build-up lasted for a few months, others described having had 'funny moments', episodes of feeling 'funny' or 'dizzy' and having 'jerks and twitches' for years. The gradual start to seizures was more common for those who had absence seizures and simple and complex partial (focal) seizures.

Several people said these early experiences were scary as they didn't understand what was going on. Some hadn't been concerned because they didn't think these experiences were anything out of the ordinary and weren't aware that others didn't in fact experience this. A few people said that it is only now, after being diagnosed and looking back in time, that they realise that early episodes of 'passing out' or frequent 'twitches' were connected to their epilepsy.

For many people with absence seizures, it was their parents or teachers at school who first noticed they had started 'daydreaming', 'ignoring the teacher', being 'vacant' and having 'blackouts'.

Sudden start to the seizures

Most young people we spoke with had their first seizure completely 'out of the blue', with no 'build-up' and no early signs of a possible problem. The sudden start to seizures was more common for people who had tonic-clonic seizures. These people described collapsing suddenly at home, at work or in public. A few people had their first seizure while they were away on holiday and a couple while exercising.

A few people had their first seizure in a GCSE exam or while preparing for them and thought it was likely to be the exam stress that brought on the seizure.

A few simply didn't know or, because of significant memory loss linked to their epilepsy, didn't remember when or how their epilepsy started.

From the early symptoms and first seizures most young people didn't realise they could have epilepsy. Many didn't visit their doctor until after seizures started happening more frequently. 

**Note: Collapsing during exercise can be a serious sign of a heart problem and always requires immediate medical assessment.

A few people realised something was wrong when they had hurt themselves during a seizure. For some, it was parents who got concerned and felt it was important to go to the doctor.

For some people the first few seizures were similar to something else, like fainting, and seizures were dismissed by people themselves, their families and initially by doctors too. A few said their doctors had dismissed their seizures because they had thought that people were faking them or trying to get attention (see 'Routes to diagnosis'). One woman said that for a while, she'd thought her 'funny moments' were just psychosomatic (physical symptoms caused by emotions) and related to stress and lack of sleep. 

For most people, once they started having seizures they continued more or less frequently. For a few, after one initial seizure, everything went quiet and seemingly back to normal, only for the seizures to come back months, or even years later.

For many, there was a long time between the start of their seizures and getting the diagnosis (see 'Routes to diagnosis').

Last reviewed March 2012.

Last updated March 2012.

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