Epilepsy affects about 1% of the population, and, in about 30% of people living with epilepsy, seizures cannot be controlled with medications. It's common! 1 in 26 people will develop epilepsy at some point in their life.
- There are about as many people with uncontrolled seizures as there are people with multiple sclerosis.
- Most people with epilepsy can manage their seizures with the help of a neurologist. The 30% or so that have difficult to control seizures that do not respond to standard treatment require the next level of care at an epilepsy center.
What is done at an epilepsy center?
An evaluation at a specialized center typically begins with EEG-video monitoring to record the seizures. This testing can confirm the diagnosis of epilepsy, the type of epilepsy, and where the seizures start in the brain. Answers to these questions help give people a more accurate outlook of what they can expect, understand what medications may work best for them, and consider which non-drug treatments may be helpful.
Many other tests may be done to look for...
- The cause(s) of the epilepsy
- The impact on a person’s health, cognition or thinking, and their general health
- How living with epilepsy affects an individual’s and their family’s quality of life
What can people learn from an evaluation at an epilepsy center?
In general, if a person has uncontrolled epilepsy, an evaluation at a specialized center can determine the following:
- The diagnosis of epilepsy was incorrect.
- The diagnosis of epilepsy was correct but the type of medication was not the best for the individual. This could mean that the wrong medication was used or the dose was wrong for that person.
- The person has medically intractable epilepsy (also called drug-resistant) and medications will not work. In this case, options other than medications should be considered.
- The most effective non-drug treatment is resective surgery. This type of surgery removes the area of brain tissue that is generating the seizures if it can be identified. Most often this area is in the temporal lobe.
- Other options include dietary therapy (e.g., ketogenic diet), neurostimulation (e.g., vagus nerve stimulation, responsive neurostimulation), and other types of surgery.
Are there different types of epilepsy care?
- EEG-video monitoring is the key to proper epilepsy management at an epilepsy center. Yet there can be many differences in how this test is done and interpreted. The specialists' experience in EEG monitoring is important to consider. In other words, it takes more than an EEG machine and a video camera to perform EEG-video monitoring.
- The National Association of Epilepsy Centers (NAEC) has defined various levels of Epilepsy Centers. To be called “comprehensive,” a center should provide all approved treatment options for seizures, including all available medications and the non-drug treatments. A comprehensive center should be … well … comprehensive.
Why should people consider going to an epilepsy center?
- Don’t settle for continued seizures! Unfortunately, despite several official recommendations, some neurologists and people with epilepsy tend to settle for the "status quo" and tolerate seizures, as if there were no other options. All too often, treatment only consists of refilling medications.
- Some people have types of epilepsy that can never be well-controlled. In this case, seeing an epilepsy specialist is very important to make sure you get the best medicine for the type(s) of seizures you have with the least amount of side effects.
- Yet many others can get seizures much better controlled if they consider newer medicines or different treatments.
- Make sure your diagnosis is correct! Many people are treated for years without ever having EEG monitoring to be sure they have epilepsy.
- For example, about 30% of people sent to specialized centers for difficult seizures turn out to not have seizures and to have been misdiagnosed. On average, it takes these people 7 to 10 years before obtaining the correct diagnosis! This usually means many years of seizure medications, emergency visits, hospitalizations, tests, procedures, and other treatments for a wrong diagnosis of seizures.
- Similarly, people who become seizure free after successful surgery for epilepsy have, on average, waited 15 years to be referred to a specialized center.
How can people learn about the need to treat seizures earlier and get people to the right type of care?
- Despite guidelines published by the American Academy of Neurology to encourage early referrals, recent evidence suggests that this tragic delay has not changed in the last 10 years.
- The National Association of Epilepsy Centers has also published guidelines for referrals, however, the information has to get out to the primary care and neurology communities, as well as to the general public. People need to know where they can get the "right help at the right time."
- To help improve this situation, the Internationl League Against Epilepsy recently published a consensus definition of “refractory” epilepsy and the American Academy of Neurology included "surgical therapy referral consideration" in a series of quality measures. Hopefully helping people understand what refractory epilepsy is and what to do if one has this may help.
- People with epilepsy and their families have a role too. Make sure you ask questions of your health care team. If you don't know your diagnosis, you still have seizures, treatment is not working, or other problems are happening, ask for another opinion.
- Print this information and share it with your doctor or nurse. Ask them to help you take the next step. It's your epilepsy and your life - let's work together to get you the "right help at the right time"