Levels of Epilepsy Care
Most people with epilepsy need the help of a neurologist at some point. A neurologist is a doctor who specializes in treating conditions of the brain and nerves. This doctor will diagnose your epilepsy and work with you to find an anti-seizure medicine.
Seven out of 10 people with epilepsy can control their seizures with medicine. The other 30 percent have what is called drug-resistant epilepsy. This type of epilepsy requires more advanced care. Drug-resistant epilepsy is also called refractory or intractable epilepsy.1
Most epilepsy centers are located in major cities. If you live in a rural area or small city, you may need to travel to find advanced care.
The National Association of Epilepsy Centers (NAEC) sets the U.S. standards for different levels of epilepsy care. The association also accredits centers that care for people with epilepsy. NAEC recognizes centers as level 3 or 4, with level 4 care offering the most services.1
The most basic type of epilepsy care is level 1. This is usually provided in a hospital emergency room or a primary care doctor’s office. If epilepsy is suspected, you may be referred to a neurologist for more testing.1-3
Level 2 is the next level of care and involves seeing a general neurologist. A general neurologist treats all types of brain and nerve disorders, not just epilepsy. They may or may not work at a specialized epilepsy center. Many people with epilepsy are treated at this level of care.1-3
Level 3 care takes place in an NAEC-accredited epilepsy center. A level 3 center offers basic epilepsy diagnosis and treatment. More straightforward surgery may be performed here. People with drug-resistant epilepsy should be treated in an advanced epilepsy center.1-3
An epilepsy center builds care around a team of specialists. This team offers more options for diagnosing and treating epilepsy than a general neurologist. Staff will include:1-3
- Epileptologists (neurologists who specialize in treating seizures and interpreting EEGs)
- Neurosurgeons (surgeons who operate on the brain and nerves)
- Neurophysiologists (neurologists who specialize in interpreting EEGs)
- Nurse specialists
- EEG technologists
- Social workers and psychologists
A level 4 center provides the most advanced and biggest range of services to treat epilepsy. It offers all the basic services of a level 3 center, plus more complex diagnostic tools and treatments.1-3
When do you need more advanced care for epilepsy?
Uncontrolled seizures are a serious health issue. Uncontrolled seizures can also make everyday activities hard, which leads to poor quality of life. You should ask for a referral to a level 3 or 4 epilepsy center if:2
- You are seeing a primary care doctor and your seizures are not under control after 3 months
- You are seeing a general neurologist and your seizures are not controlled after 12 months
How can an epilepsy center help?
The most advanced services and treatments offered at an epilepsy center can help you find out if:3
- Your epilepsy diagnosis is correct
- Your current anti-seizure drug or your dose is wrong for your type of epilepsy
- You need epilepsy surgery or an epilepsy device
- You need to be monitored during a keto diet
- Epilepsy is affecting your overall health, thinking, or memory
The NAEC website lists all level 3 and 4 epilepsy centers it recognizes in the United States.