Routes to diagnosis of epilepsy

Diagnosing epilepsy is based on both the person's clinical history and diagnostic tests. There is no single definite test to diagnose it. People are usually referred to a neurologist (a specialist in disorders of the brain and the nervous system), some of whom specialise in epilepsy. A neurologist will usually arrange medical investigations which may not be conclusive and will also consider other possible causes for the events. Here young people talk about being diagnosed with epilepsy and how they were told they had it. 

A few got the diagnosis soon after they went to the doctor, but for many it took a long time to get the diagnosis. Most young people were referred to a neurologist by their GP, but a few saw a doctor privately to avoid delays and long waiting lists. One woman went to stay with her relatives in the USA so she could have all the tests done over there. Going for tests and the process of being diagnosed was often a worrying time for young people and their families. 

When getting the diagnosis takes a long time

For many people getting the diagnosis was a long struggle. It often took many months, sometimes even years, to get the right diagnosis. The reasons varied. For a few, all the tests kept coming back as normal, despite them continuing to have seizures. There can be delay in diagnosis if, for example, the test results are normal and there is uncertainty around the clinical history, but it is entirely possible to have normal investigations but still have epilepsy.

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For a couple of people establishing the exact diagnosis took a long time because they had a type of epilepsy which was difficult to diagnose. Sometimes this can happen if the symptoms of epilepsy are similar to other conditions or there are differences between the clinical history and the test results.

A few people had to wait a long time because of delayed and lost referrals and occasionally even lost test results. One person's EEG results were 'misplaced' and she had to wait another twelve months for them.

A couple of people's referrals went missing and they only found out about this because they'd contacted their GP for an update. One woman even had an episode of status epilepticus* (Note, see the bottom of page) while waiting for a referral, which had in fact been lost.

A few people had a long wait for the diagnosis because doctors thought they were experiencing 'dissociative-seizures' (seizures caused by psychological factors) or 'faking' their seizures. One person was discharged and doctors later refused to see her because they believed she was feigning her seizures. Not being taken seriously made these people both very angry and sad. Dissociative-seizures are a type of seizure and those experiencing them are not ‘faking it’.

A few people said doctors first suspected another cause to their seizures than epilepsy, such as diabetes, migraines, ADHD (Attention deficit hyperactivity disorder) or heart problems.

For many, waiting for the diagnosis was the worst part of their experience and some said they would have liked more information and explanation at this time. People found this time extremely frustrating and confusing, particularly if 'different doctors kept telling different things'. One woman felt the doctors were 'slack' in getting her results back to her.

Getting the diagnosis quickly

A few young people had a more straightforward experience of getting the diagnosis and were diagnosed within weeks of seeing the specialist and having tests. One person's doctor told her that her seizures were a 'textbook case' of epilepsy and given the diagnosis straight away.

One man was told straight after his first seizure that it was 'obvious' he'd had an epileptic seizure. Another got the diagnosis quickly with an 'emergency fast track referral' after he'd had two seizures within a couple of weeks.

Being told about the diagnosis

Young people were told about their diagnosis either at the epilepsy clinic or by a letter. One woman's doctor, whom she saw privately, came to her house to give her the results. A few people actually got to see their scan images or EEG results. 

A couple of people who had their first few seizures in childhood were told that, although they could have epilepsy, doctors were careful about confirming the diagnosis because they could 'grow out of it'

A few were told they would grow out of epilepsy by their teens or later on because of the type of epilepsy they were diagnosed with, but when this wasn't the case it was a big shock.

Hearing about the diagnosis came as a shock to some, and as a relief to others (see 'Feelings about an epilepsy diagnosis'). 

*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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