Jessica Minhas didn't know what caused her to blank out as she rushed down a flight of stairs to catch the subway, but she never would've guessed that epilepsy was to blame. She thought seizures were big events that always made you pass out and have uncontrollable jerking movements.
Turns out, Minhas had what's known as an "absence seizure," a type that lasts only a few seconds and begins and ends abruptly.
When her regular doctor had trouble making a diagnosis, Minhas, founder of a nonprofit for mental wellness care, asked to see a neurologist. That's a doctor who has special training in brain disorders.
Neurologists and other types of specialists can figure out if you've got epilepsy and help you find the right treatment to control your seizures.
Where Should You Turn to Get an Epilepsy Diagnosis?
"Any physician could at least start a discussion about the possibility of epilepsy based on the reporting of seizures," says Imad Najm, MD, director of Cleveland Clinic's Epilepsy Center at the Cleveland Clinic Neurological Institute.
If your regular doctor -- whether they're a pediatrician, internist, or family doctor -- suspects epilepsy, they will refer you to a neurologist. To confirm the diagnosis, however, you need to get a brain wave test called an EEG (electroencephalogram).
For most people, no further tests are needed. But if the treatment you get doesn't help -- this happens to about 35% of people, Najm says -- you should see a specialist. Your regular doctor will probably refer you to a neurologist or an epileptologist, a doctor with specific training in diagnosing and treating epilepsy.
The specialist will typically order more tests to find the cause of your epilepsy, and they will prescribe medicine to prevent more seizures. If medications don't help, an epileptologist may recommend special tests to see if you might need surgery or other forms of treatment.
Najm says you should think about going to a specialist if your regular doctor can't answer your questions in a way that satisfies your concerns or if they're uncomfortable continuing to manage your condition.
Something else to keep in mind: Not all events that appear to be epileptic seizures truly are.
"Reading the results of an EEG is not an exact science," Najm says. Specialists who see a lot of epilepsy cases are experienced in making an accurate diagnosis.
Another reason to see a specialist? They have expertise in choosing anti-seizure drugs. "There is a certain knowledge that is needed to give the best medication for the patient," Najm says.
How to Find a Specialist
Ask your doctor for a referral. You can also go the website of the National Association of Epilepsy Centers. It lets you plug in your ZIP code and find a specialist in your area.
Najm suggests you look for a place that has an epilepsy monitoring unit -- a center that has in-depth diagnostic and treatment services for people with hard-to-diagnose or hard-to-treat epilepsy.