By Amber Kaiser

Within the last year, I learned about an organization called the National Association of Epilepsy Centers (NAEC). About a month ago, I also checked out a presentation they were giving at the 11^th Annual Epilepsy Awareness Day Disneyland in Anaheim, California. Overall, I got a sense that the organization is still defining what makes the different levels of epilepsy centers, especially as technology continues to improve in healthcare for people with epilepsy. Read on to learn more, especially if you are looking for a hospital with the most advanced epilepsy care available today!

What is an Epilepsy Center?

According to the NAEC, an epilepsy center “provides a comprehensive team approach to the diagnosis and treatment of epilepsy.” The team includes doctors like epileptologists (an epilepsy specialist who is the best doctor for epilepsy), neurosurgeons, neuropsychologists, nurse specialists and others with specialized training in the field of epilepsy.

Epilepsy Center Levels 1-4

The NAEC “assures quality epilepsy care by accrediting and supporting specialized epilepsy centers.” In 2010, they created and published details about what is considered the “four levels of epilepsy care” and published this report about guidelines and epilepsy services available in each level. They also now accredit centers that provide levels 3 and 4 of epilepsy care. The Epilepsy Center services of each level include:

·       Level 1: Epilepsy care in the ER or a PCP’s office with an epilepsy evaluation

·       Level 2: A consultation with a general neurologist that may occur at a specialized epilepsy center

·       Level 3: Care in a specialized epilepsy center that provides basic neurodiagnostic evaluations and services, including medical, neuropsychological and psychosocial services. They can also include noninvasive evaluation for epilepsy surgery, “straight-forward” resective epilepsy surgery, and implantation of the vagus nerve stimulator (VNS).

·       Level 4: Provides more complex forms of intensive neurodiagnostic monitoring, neuropsychological and psychosocial treatment, as well as a complete evaluation for epilepsy surgery. A Level 4 Epilepsy Center is the highest rating and may have all the best resources and care available with multiple doctors that specialize in epilepsy.

What to do if your seizures aren’t under control

If your seizures aren’t under control within 3 months of care by a PCP, the NAEC recommends that you should see a neurologist or an epilepsy center. Speaking from experience, I can tell you–don’t be afraid to take that step. You literally need to. Your PCP may not even care (or know!) to refer you to a specialist—you have to take the initiative and I know it’s tough when you are starting to have seizures because most people have no idea what to do while they are attempting to accept it at the same time. Also, as NAEC recommends, remember that if you are seeing a neurologist and your seizures haven’t been brought under control within 1 year, you should request to see an epileptologist (an epilepsy doctor) and be referred to a specialized epilepsy center (these words weren’t available early in my diagnosis over 20 years ago, but they do exist now!). 

I also understand having health insurance makes all of these steps easier, but if you don’t have insurance (or have something that doesn’t cover all your costs), check out my advice with how to get help paying for your AED’s or epilepsy medications as well as resources for help with medical care costs in my interview with Donna Stahlhut, founder and retired CEO from Epilepsy Foundation of Texas. You can also find epilepsy foundations and organizations in your area by checking your state in this list of epilepsy support resources.

Epilepsy Center Levels 3 & 4

If your seizures are still happening frequently, even with medication, or you aren’t already seeing an epileptologist, check if there are any Epilepsy Centers Levels 3 or 4 in your area by scrolling through this list by state or submit a search. This will help you find the best epilepsy centers in the US. Also, remember even if you don’t live near any epilepsy care centers, you can always start by video appointments and go from there!

Learn more about the NAEC

Website: https://www.naec-epilepsy.org/