Signs and symptoms of epilepsy

Epilepsy is the most common serious neurological (affecting the brain) condition, that affects people of all ages, ethnicities and social classes. One in every 100 people in the UK has epilepsy (NHS Choices 2015).

Here people discuss how they found out they had epilepsy.

Although experiences vary enormously, seizures tend to start in infancy or by late adolescence. Many people we interviewed discussed what they remembered of the events leading up to the diagnosis or what they were told by others.
People often recalled having symptoms for some time before a diagnosis was made. One woman, whose son had epilepsy around 14 months of age, described what happened to alert her to a problem. Another woman remembered having a seizure on the first day of secondary school. Several people discussed how epilepsy was difficult to diagnose and how they visited both neurologists and psychiatrist /psychologists before a diagnosis was made.
Some of the people we interviewed said they were diagnosed with epilepsy as young adults. One woman explained that her husband was the first to notice symptoms. One man described having two car accidents caused by seizures; a third seizure was witnessed by his partner and led to the tests and diagnosis.
Some people discussed losing consciousness and waking up in hospital. One woman recalled having had a stroke and then severe headaches for several months before her first seizure. Another reported that an episode of status epilepticus led to her diagnosis*. 
Other people were diagnosed with epilepsy later in life. This woman recalled that, although she had been diagnosed at the age of 51, she had experienced symptoms for much longer.
First seizures are twice as common after the age of 65 than between the ages of 25 and 64. One man described how his epilepsy began at the age of 74.
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People also noted that the time from symptoms to diagnosis can be long or worrying, and discussed the tests used to diagnose epilepsy (see Diagnosing epilepsy).

For more information sources see our resources section.

*Status epilepticus is a prolonged seizure or a series of seizures without the person regaining consciousness in between. Status can be convulsive or non-convulsive. Status epilepticus is an emergency and requires immediate medical attention.

Last reviewed May 2016.
Last updated May 2016.


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