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Severe Epilepsy: Your Guide To Getting a Diagnosis

Posted on January 24, 2022
Medically reviewed by
Evelyn O. Berman, M.D.
Article written by
Torrey Kim

  • If you’re experiencing the symptoms of severe epilepsy, your health care team will perform a range of exams and tests to find the cause.
  • The diagnostic process for someone with seizures may include a medical evaluation, neurological testing, imaging studies, and other tests.
  • During the evaluation, your physician will ask questions about your personal medical history and your family history.

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

Following 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, since there is no single test that can detect epilepsy.

Members of MyEpilepsyTeam have shared a wide range of timelines when it came to getting diagnosed. “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.

Medical Evaluation

If you experience a seizure — the primary symptom of epilepsy — your first step will be to get a full medical evaluation. This will likely be with your primary care physician, a neurologist, 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 your family history. It’s important for the health care providers to know if other people in your family have epilepsy. They will also want to know whether you’ve experienced a traumatic brain injury, head injury, febrile seizures, encephalitis, meningitis, or other medical conditions that affected your brain in the past.

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

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 will typically take between one and two hours, and it is 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 present for a prolonged EEG. During this test, continuous monitoring will be performed over a multiday period, 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.

What was your epilepsy diagnostic process like when you first began experiencing symptoms?
Click here to share in the comments below.

Imaging Tests

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

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

Other, less commonly performed imaging studies include:

  • Magnetic resonance spectroscopy — This study is similar to an MRI scan, but it reviews biochemical changes in the brain.
  • Single-photon emission computed tomography — 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 — The results of this test, also called a PET scan, will allow the physician to determine the amount of oxygen or glucose (sugar) being used by different sections of the brain.

Additional Testing

Your neurologist may order blood tests to look for the cause of your seizures. Blood tests may reveal genetic abnormalities or infections.

In addition, your health care team might perform a neuropsychological assessment to evaluate your thinking abilities. This can reveal whether you might have abnormalities in different parts of your brain, which the physician could then investigate further.

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 you can get an accurate diagnosis.

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 101,000 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 began experiencing symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.

All updates must be accompanied by text or a picture.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Torrey Kim is a freelance writer with MyHealthTeam. Learn more about her here.

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