Epilepsy does not always look the way we expect

Ask someone what epilepsy looks like and they may picture a child having a convulsive seizure.

They may be less likely to picture an older adult recovering from a stroke, or someone who has survived a serious traumatic brain injury and begins experiencing unusual neurological symptoms weeks or months later.

Yet epilepsy can affect people across the lifespan, and seizures do not always look the way people expect.

That misunderstanding matters because some seizures can be subtle. A person may experience unusual sensations, brief periods of confusion, changes in awareness, or other symptoms without realizing they are having seizures. Physicians often miss these early signs too. For some patients, a convulsive seizure becomes the event that finally brings them into the health care system, even though they later recognize that subtler episodes had been happening for some time.

For people recovering from a serious brain injury, this can be especially difficult.

Surviving a stroke or traumatic brain injury can feel like weathering a storm. Patients and families may already be managing changes in memory, movement, work, relationships, and daily life. Seizures may not be the next complication they are expecting.

But serious injuries to the brain increase a person’s risk of developing epilepsy. One of the challenges we face is that we cannot yet reliably predict which patients will go on to develop seizures and which will not.

My research is focused, in part, on changing that.

We are studying whether brain scans after an injury can help us identify people most likely to develop epilepsy. The goal is not simply to make a better prediction. If we can identify patients at higher risk with greater confidence, we may be able to monitor them more closely, recognize seizures sooner and, ultimately, investigate whether intervention could prevent seizures from beginning in the first place.

Preventing a seizure can mean much more than avoiding a single medical event.

A seizure can temporarily take away a person’s ability to drive. It can affect employment and independence. There is still stigma associated with epilepsy, and there is the uncertainty of not knowing when another seizure might happen. People with epilepsy also experience higher rates of depression, anxiety and memory problems, although we still have important questions to answer about how these conditions relate to the underlying disease, the seizures themselves, and the medications used to treat them.

Reducing that uncertainty is one of the goals driving our research.

The work does not end once someone has been diagnosed. We also want to understand an individual’s epilepsy well enough to choose the treatment most likely to help them.

For many people, medications successfully control seizures. But for a significant group of patients, seizures continue despite appropriate medications. This is known as drug-resistant epilepsy. For these patients, simply trying medication after medication is unlikely to provide the outcome we want.

Surgery can offer another possibility.

Before epilepsy surgery can be considered, however, we need to understand where in the brain a patient’s seizures are coming from. That process involves specialized testing that may include an MRI brain scan and video EEG monitoring. Sometimes these tools give us a clear answer. Sometimes they do not.

This is another area where new technology is beginning to change what may be possible.

At the University of Rochester, we are using new computational tools to analyze brain imaging in patients being evaluated for epilepsy surgery. Some of these tools use forms of artificial intelligence to identify abnormalities that can be difficult to recognize through conventional review.

One example is the Multi-centre Epilepsy Lesion Detection project, or MELD, which uses MRI data and computational methods to help identify abnormalities associated with focal cortical dysplasia, one of the most common causes of drug-resistant epilepsy.

In our work, we have already seen cases in which these approaches have helped identify abnormalities that were not apparent on an earlier review of an MRI. That can change the conversation.

When we cannot determine where seizures originate, our treatment options may be limited. When additional information helps us locate the area responsible for seizures, a patient may become a candidate for treatment that was not previously possible.

The goal is not better imaging for its own sake, nor is it using artificial intelligence simply because the technology is new. The goal is better treatment.

For epilepsy surgery, the outcome we hope for is seizure freedom. Even when complete seizure freedom is not possible, meaningful reductions in seizure frequency can change a person’s quality of life.

These advances also point toward something patients should know now.

If you have experienced a stroke or serious brain injury and later begin having unexplained neurological symptoms, tell your physician. Symptoms that seem strange or difficult to describe may be worth evaluating.

And if you have already been diagnosed with epilepsy but continue to experience seizures despite medication, ask whether evaluation at a specialized epilepsy center may be appropriate. Medication is not the only treatment available for epilepsy, and continuing seizures should not automatically be accepted as the best outcome medicine can offer.

Across all of this work, from predicting epilepsy after brain injury to using new imaging tools for people with drug-resistant seizures, the objective is the same: understand the disease better so we can choose better treatments for the person living with it.

Epilepsy will not always look the way we expect. Increasingly, our tools for understanding and treating it do not look the way they did a decade ago either.

The challenge now is to use those tools to recognize risk earlier, reduce uncertainty and better understand each person’s epilepsy so that we can ultimately do what matters most: find the treatment most likely to help them live without seizures.

James J. Gugger, M.D., Pharm.D., is a neurologist and epilepsy specialist at the University of Rochester Medicine whose clinical and research interests include post-traumatic epilepsy, antiseizure medication management, and the surgical treatment of drug-resistant epilepsy.

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