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.
Discusses the events leading up to her diagnosis.
Explains that his brother first noticed that something was wrong.
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.
Explains what alerted her to a problem in her 14-month-old son.
Recalls having her first seizure at secondary school.
Explains that he was seeing both neurologists and psychologists.
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.
Explains that she was diagnosed with epilepsy as a young adult.
Describes her husband first noticing symptoms of her epilepsy.
Tells how he had two car accidents and then a third seizure which his partner witnessed.
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*.
Recalls losing consciousness and waking up in hospital.
Explains that she had had a stroke and severe headaches before her first seizure.
Explains that a status epilepticus episode led to her diagnosis of epilepsy.
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.
Recalls that she had symptoms of epilepsy a long time before she was actually diagnosed.
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.
Explains that he presented with epilepsy at the age of 74.
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.