How to Find Epilepsy Treatment That Works

When your epilepsy treatment doesn’t work, it’s natural to feel frustrated or hopeless about finding the right therapy. You may have tried countless medications or other neuromodulation options, like vagus nerve stimulation (VNS Therapy). Maybe you’ve had epilepsy tests in the past that didn’t help you find answers.

“Don’t give up,” says Martha Morrell, MD, chief medical officer of NeuroPace and epilepsy specialist at Stanford Health Care. Continued testing can help you find other treatment options.

“Even if people haven’t been able to tell you in the past what’s going on, or even if you’ve been treated with one thing for 10 years, you should still be re-evaluated,” says Dr. Morrell. “If we haven’t found the solution yet, then more information is better.”

Find an epilepsy specialist

As your first step, you should find an epileptologist (an epilepsy specialist) and schedule an appointment. These doctors have expertise in what causes epilepsy and how to diagnose it. They understand and can access all available treatments, so you’ll have more personalized options to consider.

“Everybody’s pathway and length of time it takes to get answers is different,” says Dr. Morrell.

Don, a design engineer from Chicago and former drag racer, saw four different neurologists and tried multiple medications before seeing an epileptologist. Tim went through a downward spiral with his son, Gabe, for five years before Gabe was finally referred to an epileptologist. In both cases, the transition to expert care helped Don and Gabe control their seizures and find a better quality of life.

Dr. Morrell encourages people to seek out specialized epilepsy care as soon as anti-seizure medications don’t work or cause unpleasant side effects. You don’t have to wait for a detailed epilepsy diagnosis.

How can Phase 1 imaging and EEG tests for epilepsy help?

You may get several tests as part of a full evaluation, categorized into Phase 1 and Phase 2 of epilepsy testing. Phase 1 includes noninvasive electroencephalography (EEG) tests and imaging scans to pinpoint which parts of the brain cause your seizures.

Standard EEG

Epilepsy specialists start with a standard EEG, which lasts about 30-60 minutes. Small metal disc electrodes are placed on your scalp with an adhesive paste. They can detect electrical signals (brain waves) from within your brain.

“If something happens during the test, that’s great. But very often something does not happen,” says Dr. Morrell. “At that point, we do video EEG monitoring to record over a longer time period and correlate what happens during a seizure with what happens in the brain.”

Video EEG and at-home EEG

During video EEG, you get the same type of scalp electrodes as a standard EEG. But you stay in the hospital to record your brain activity anywhere from several hours to several days. Epilepsy specialists also video record how seizures affect your body, such as causing you to stare or move your head to one side.

Your doctor may also offer ambulatory (at-home) EEG monitoring as an alternative to staying in the hospital. Ambulatory EEG uses a compact, mobile EEG system to record brain activity as you go about your daily life.

Don, the design engineer, learned from video EEG tests for epilepsy that he had tonic-clonic (grand mal) and focal unaware (complex partial) seizures. “The video and EEG monitoring let me see how the focal unaware seizures manifest — how I’ll stare blankly into space while tapping a finger,” he says.

The results also helped his doctors understand that seizures came from both sides of his brain in his hippocampus. Because Don wasn’t a candidate for resective surgery (surgery to remove the area of the brain causing seizures), he decided to get the RNS System.

Epilepsy brain scans

Epileptologists often recommend a magnetic resonance imaging (MRI) scan during Phase 1. An MRI can show any subtle changes or abnormal structures in your brain that may cause seizures.

Some comprehensive epilepsy centers across the US also offer magnetoencephalography (MEG), which Dr. Morrell compares to EEG. “Instead of looking at brain waves, MEG looks at magnetic fields,” she says. “This is just another way of looking at the electrical activity to see where a seizure starts and where it spreads.”

What is Phase 2 of epilepsy monitoring?

If Phase 1 doesn’t provide enough information, your doctor may recommend Phase 2: invasive EEG monitoring. Epilepsy specialists do a minimally invasive procedure to put thin, wire electrodes inside your brain. This intracranial (inside the skull) monitoring is called stereo-EEG.

“You may see abnormalities in the scalp EEG or video EEG in a fairly large region of the brain ,” says Dr. Morrell. “With intracranial monitoring, you can record EEG directly from the brain in that region in order to understand more precisely where the seizures begin.”

Intracranial monitoring can also detect seizure activity arising from areas deep in the brain that scalp electrodes can’t always pick up.

Information from her invasive EEG test helped Janie, a Georgia native, find epilepsy treatment that works for her. “I had already tried so many medications hoping that they would help, but they had not controlled my seizures,” she says. “The information the doctors collected from the monitoring showed that I would be a good candidate for the RNS System.”

Normal EEG but still having seizures?

Routine EEGs may be normal, even for persons who are having frequent seizures. An EEG could be normal because the type of electrical activity that allows the doctor to diagnose or localize seizures did not occur during the 20 to 40 minute EEG.
Your doctor may recommend that you repeat the EEG, have a 24 or 48 hour ambulatory EEG, or even come in to the epilepsy monitoring unit for video EEG monitoring.

Your doctor might also ask you to repeat an MRI, even if a prior MRI was normal. Perhaps the first MRI was obtained on an MRI scanner that was not as sensitive as newer MRI machines. Dr Morrell suggests that if you haven’t had an MRI scan in the last five years, it’s could be time to get another one.”

Test during the optimal time

Finding answers also may depend on whether EEG tests for epilepsy occur at the right time for you. Seizures happen in cycles. Your seizure cycles are unique and may relate to life circumstances. Pressures at work, or even your menstrual cycle, may affect when your seizures occur.

“If you’re in the hospital for EEG monitoring for five days, but that’s the five days when things are quieter for you, then your EEG may not record any seizure related activity,” says Dr. Morrell. “But if you test at another time, you might catch the more active time of the cycle.”

Keeping a “seizure diary” can help you and your doctor plan EEG testing for when it will most likely detect seizure activity. Write down exactly what you did before every seizure and what happened during the seizure. These details can point to possible seizure triggers and the timing of your seizure cycle.

Don’t give up

So many factors go into finding epilepsy treatment that works for you. Talking with an epileptologist can help you understand each one and set you on the right path. Together, you and your doctor can pinpoint what’s really going on and discover other treatment options.

“The good thing is that there are so many treatments now for epilepsy,” says Dr. Morrell. “There’s something for everyone.”