3  Getting Diagnosed

3.1 What to Expect

The journey to the diagnosis of epilepsy can feel overwhelming and may be long. Getting to the right diagnosis is the first step toward understanding and managing epilepsy effectively.

This section will walk you through what typically happens during the diagnostic process, what questions your doctors will ask, and what tests you might encounter along the way.

3.2 The First Appointment

3.2.1 What Your Doctor Needs to Know

When you first meet with a neurologist, they’ll want to hear a detailed account of what happened. The more information you can provide, the better. They’ll be particularly interested in:

Before the event:

  • What was the person doing?
  • Were they sick, tired, or stressed?
  • Had they missed any sleep or meals?
  • Were there any unusual triggers (flashing lights, fever, etc.)?

During the event:

  • What did it look like from start to finish?
  • How long did it last?
  • Were they aware of what was happening?
  • What parts of the body were affected?
  • Did the symptoms change or spread?

After the event:

  • How long did it take to return to normal?
  • Was there confusion, sleepiness, or weakness?
  • Did they remember what happened?
Video is Invaluable

If anyone captured video of the event on a phone, bring it to your appointment. A brief video clip can provide more diagnostic information than the most detailed verbal description. Don’t worry about video quality - even shaky, partial videos can be extremely helpful.

3.2.2 Medical History Matters

Your doctor will also ask about:

  • Previous similar episodes (even if they seemed minor)
  • Birth and developmental history
  • Head injuries or brain infections
  • Family history of seizures or epilepsy
  • Current medications and supplements
  • Sleep patterns and quality

It can help to write down this information beforehand so you don’t forget important details during a stressful appointment.

3.3 What Happens After One Seizure?

If someone has had only one seizure, the approach depends on several factors:

Lower risk situations (diagnosis may be deferred):

  • Single unprovoked seizure with normal exam
  • Normal EEG and brain imaging
  • No family history of epilepsy
  • No concerning features during the seizure

Higher risk situations (diagnosis more likely):

  • Abnormal neurological exam
  • Abnormal EEG or brain imaging
  • Family history of epilepsy
  • Certain seizure types or features

After a single seizure, your doctor might recommend testing but hold off on starting medication, as the risk of another seizure isn’t always high enough to warrant treatment. This is a nuanced decision that depends on your individual situation.

3.4 When is Epilepsy Diagnosed?

According to modern criteria, epilepsy can be diagnosed in any of these situations:

  1. Two or more unprovoked seizures occurring more than 24 hours apart
  2. One unprovoked seizure plus a high likelihood (>60%) of more seizures based on testing or specific epilepsy syndrome
  3. Diagnosis of an epilepsy syndrome (a specific pattern of seizures and EEG findings)

The word “unprovoked” is important here. Seizures caused by immediate, reversible situations (like very low blood sugar, alcohol withdrawal, or a high fever in a young child) are “provoked” and don’t lead to an epilepsy diagnosis.

3.5 Common Tests

As part of the diagnostic workup, your doctor will likely order some or all of these tests:

3.5.1 Electroencephalogram (EEG)

The EEG records your brain’s electrical activity and is the most important test for epilepsy. See Chapter 4 for detailed information about what to expect.

3.5.2 Brain Imaging

An MRI or CT scan looks at the structure of the brain to identify any abnormalities. See Chapter 5 for more details.

3.5.3 Additional Testing

Depending on your situation, other tests might include:

  • Genetic testing (see ?sec-genetic-testing)
  • Neuropsychological testing (see ?sec-neuropsych-testing)
  • Prolonged video-EEG monitoring
  • Specialized imaging studies

3.6 Questions to Ask Your Doctor

It’s normal to feel overwhelmed during medical appointments. Consider bringing a list of questions, such as:

  • What type of seizure(s) did I/my child have?
  • Do we know what caused them?
  • What’s the likelihood of more seizures?
  • Do you recommend starting treatment now or waiting?
  • What tests do we need, and what will they tell us?
  • What should we do if another seizure happens?
  • Are there any immediate restrictions (driving, swimming, etc.)?
  • When should we follow up?
Bring Support

Consider bringing a family member or friend to appointments. They can help remember information, ask questions you might forget, and provide emotional support. Many people also find it helpful to take notes or ask if they can record the conversation (with permission). :::

3.7 If the Diagnosis is Unclear

Sometimes the diagnosis isn’t straightforward. You might hear terms like:

  • “Possible seizures” - the events might be seizures, but we need more information
  • “Seizure-like events” - episodes that look like seizures but might have other causes
  • “Paroxysmal events” - recurring episodes that need investigation

If the diagnosis is uncertain, your doctor might:

  • Recommend watching and waiting
  • Order additional testing
  • Refer you to an epilepsy specialist
  • Arrange for video-EEG monitoring to capture an event

It can be frustrating not to have immediate answers, but taking time to get the right diagnosis is crucial for proper treatment.

3.8 Moving Forward

Getting an epilepsy diagnosis can feel like a lot to process. You might experience:

  • Relief at finally having an explanation
  • Worry about what this means for the future
  • Confusion about next steps
  • Grief about the diagnosis

All of these reactions are normal and valid. Remember that:

  • Epilepsy is often a highly treatable condition
  • Most people with epilepsy live full, active lives
  • You’re not alone - millions of families navigate this successfully
  • Understanding your diagnosis is the foundation for good management

The chapters that follow will help you understand the specific tests you might encounter, the treatment options available, and strategies for living well with epilepsy.

3.9 Key Takeaways

  • Detailed history and eyewitness accounts are crucial for diagnosis
  • Video of events is extremely valuable if available
  • Epilepsy diagnosis requires either multiple unprovoked seizures or one seizure with high recurrence risk
  • The diagnostic process may include blood tests, EEG, and brain imaging
  • It’s okay if the diagnosis takes time - accuracy is more important than speed
  • Second opinions are appropriate and encouraged when needed
  • Most people with epilepsy achieve good seizure control and quality of life