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.
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 there is no single test that can detect a seizure disorder such as epilepsy.
Members of MyEpilepsyTeam have shared a wide range of timelines related to receiving a 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.
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 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.
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 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.
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 MRI and 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, the area of the brain affected, and the possible causes of your seizures.
Less commonly performed imaging studies include:
Because there are many types of epilepsy, 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 antiseizure 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.
Your health care team might also perform a neuropsychological assessment to evaluate your thinking abilities. This test can reveal whether you might have abnormalities in different parts of your brain, which the physician could then investigate further.
According to the Epilepsy Foundation, specific neurological tests to assess your thinking, function, and senses may include:
Not only can these tests help your doctor find out more about the cause of your epilepsy, but doing them at repeated visits can also help your doctor determine whether you are 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 you can get an accurate epilepsy diagnosis.
MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 112,000 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 having symptoms? What sorts of tests did you undergo to help your doctor determine your diagnosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.