The road to a diagnosis isn’t always smooth for people with symptoms of severe epilepsy. A thorough diagnostic process ensures that you get the appropriate treatment, eventually reducing seizures and improving your quality of life.

After any type of seizure, it’s important to see a health care professional. You’ll likely undergo a series of tests and a thorough medical exam. This process may include several visits because no single test can detect a seizure disorder such as epilepsy.

Members of MyEpilepsyTeam have shared a wide range of timelines related to receiving an epilepsy diagnosis. “I didn’t get diagnosed until I was 62 years old. It took about a year to get diagnosed because it didn’t show up on any test, and most of my seizures were over before someone else could see them,” one member wrote.

Another said, “My diagnosis was quick. I have an awesome neurologist.”

It’s important to understand the steps you’ll take during the diagnostic process and how you can prepare for them.

1. General Medical Evaluation

If you experience a seizure — the primary symptom of epilepsy — your first step will be to get a full medical evaluation. This may be with your primary care physician, a neurologist, an emergency medicine doctor, or an internal medicine specialist. The doctor will ask you to describe your seizure, including what happened during it, how long it lasted, whether you were conscious, what you were doing right before it, and how you felt afterward. If someone else witnessed the seizure, it’s a good idea to bring them to the exam or have them write down what they saw to help the physician understand what happened.

The doctor will also ask questions about your medical history and family history. Health care providers will need to know if other people in your family have epilepsy. They’ll also want to know whether you’ve experienced a traumatic brain injury, a head injury, febrile seizures, encephalitis, meningitis, or other medical conditions that affected your brain in the past.

Because there isn’t a particular test for diagnosing severe epilepsy, the information you share with the doctor during the initial evaluation is exceedingly important. More information is better, so anything you can tell the doctor about your symptoms, history, and background will be helpful during the diagnostic process.

2. Electroencephalography

Your doctor may want to perform an electroencephalogram (EEG), which can help the health care team visualize your brain waves and monitor any seizure activity. During this test, electrodes will be temporarily placed on your scalp. The test itself typically takes one to two hours, and it’s painless. During the EEG, the electrodes will record any electrical activity that occurs due to brain activity. The doctor will later read the results to evaluate whether you were experiencing epileptic seizures during the test and, if so, what type.

It’s possible your physician will determine that your EEG results were normal, but that doesn’t mean you haven’t experienced seizures. It just means your brain waves weren’t unusual during the test. In fact, about 50 percent of EEGs performed on people who experience seizures come out normal.

If your test doesn’t reveal anything out of the ordinary, you may be asked to undergo a prolonged EEG. During this test, continuous monitoring will be performed over several days, typically in a setting specifically designed to monitor epilepsy symptoms. In other cases, the physician might order an ambulatory EEG, which allows for continuous monitoring of brain waves while you go about your daily activities.

3. Imaging Tests

During the epilepsy diagnostic process, your doctor may order imaging tests to evaluate the structure of your brain. These tests can help your health care team determine whether you have any brain tissue abnormalities, such as lesions or scarring, that might affect your seizure activity.

During magnetic resonance imaging (MRI) and computed tomography (CT) scans, the technician will use imaging techniques to view details about your brain structure. After the neurologist reads the resulting report, they’ll be able to give you more information about your diagnosis, the area of the brain affected, and the possible causes of your seizures.

Less commonly performed imaging studies include:

• Magnetic resonance spectroscopy — This study is similar to an MRI scan but reviews biochemical changes in the brain.
• Single-photon emission CT — This test allows your health care team to see how blood flows through your brain.
• Magnetoencephalography — By measuring small magnetic fields, this test allows the provider to get a closer look at the brain’s electrical patterns.
• Ultrasound — Mainly used for newborns with seizures, this test can allow the physician to evaluate whether any blood or fluid is in the brain.
• Positron emission tomography (PET) — The results of a PET scan allow the physician to determine the amount of oxygen or glucose (sugar) being used by different sections of the brain.

4. Blood and Genetic Testing

Because there are many epilepsy and seizure types, your neurologist may order blood tests to look for the cause of your seizures. Blood tests may reveal genetic abnormalities or problems with your medication.

If you have a family history of epilepsy, doctors may look for gene mutations (changes) in your DNA to better target your treatment. For example, some medications may not work as well — or even cause worse side effects — if you have certain genetic mutations related to your epilepsy. For other genetic forms of epilepsy, you may be expected to be seizure-free after a certain age, and doctors may take you off your medications after that point. In general, genetic tests can narrow down the cause of your epilepsy and help your neurologist better understand your condition.

Blood tests may also be used to check how well your epilepsy medication is being absorbed in your body. Treatment of epilepsy often includes anti-seizure medications (ASMs), also called antiepileptic drugs (AEDs). ASM levels can be monitored through routine blood testing. This might be especially useful when you start a new ASM or if new side effects develop from an existing treatment regimen.

5. Brain Function Evaluation

Your health care team might perform a neuropsychological assessment to evaluate your thinking abilities. This test can reveal possible abnormalities in different parts of your brain, which the physician could then investigate further.

According to the Epilepsy Foundation, specific neurological tests to assess thinking, function, and senses may include:

• Tests of your motor skills, muscle strength, reflexes, balance, and coordination
• Tests of your ability to remember words, do simple math, and name objects
• Behavioral and psychological evaluation

Not only can these tests help your doctor find out more about the cause of your epilepsy, but doing them at repeated visits also can help your doctor determine whether you’re experiencing medication side effects or a worsening of your condition. For example, too much anti-seizure medication can cause slurred speech, concentration issues, and tremors. Having this information can help you and your doctor reconsider your treatment options.

Although the diagnostic process for severe epilepsy may take some time and require several visits to your health clinic, it’s important to follow through with these exams and tests so that you can get an accurate epilepsy diagnosis.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 119,000 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

What was your epilepsy diagnostic process like when you first had symptoms? What sorts of tests did you undergo? Share your experience in the comments below, or start a conversation by posting on your Activities page.