Empowering Epilepsy Patients: Would You Rather?

Researchers at Oregon State University’s (OSU’s) School of Engineering are working on a sensor system that will enable epilepsy patients to monitor their drug levels using their own saliva.[i] While this may sound esoteric and wonky, it’s a giant step toward empowering patients with drug-resistant epilepsy. Of the 3.4 million Americans with epilepsy, 30% of them cannot control their seizures with medication. I was one of those patients. Prior to my 2014 brain surgeries, I tried 13 different anti-convulsants, none of which fully controlled my seizures. Each transition to a new medication was a multi-tiered tedious process. First, I went to the GP’s office for a blood test to measure the drug levels, followed by several days’ wait for the lab results. After I received the levels, I shared them with my neurologist, so she could determine whether/how to adjust the medication to ensure it was effective.

The OSU technology is still in its infant developmental stages, and it’s only focused on one anti-epilepsy medication, Carbamazepine (commercially known as Tegretol), but I am still doing a Snoopy Dance about it. This sensor system could save epilepsy patients so much time, effort, and discomfort. I’ve previously blogged about the lack of funding for epilepsy-related research, so I’m thrilled to highlight this study as hopeful proof of some innovation and resources dedicated to this often-neglected illness.

I reached out to Dr. Lael Wentland, an OSU study co-leader. She said one of the reasons their team focused on Carbamazepine is because they recognized people with epilepsy were experiencing a care gap when it came to medication monitoring. Yes! That protracted multipart monitoring process hinders patients’ treatment plans. How exciting that Dr. Wentland’s team might be able to address this!

Would you rather spit into a test tube, or have your inner elbow jabbed?  I think we’d all agree, the former is far less invasive and painful. And if this current research advances, epilepsy patients may eventually be able to monitor their medication levels on their own. According to Dr. Wentland, “With further development, our system could be used to empower epilepsy patients by letting them monitor their anti-seizure drug levels from home.” The OSU study only tested saliva that was spiked with Tegretol, an older commonly used anti-convulsant, but Dr. Wentland said she hoped the technology would eventually be used to monitor other anti-convulsants, as well.

            The OSU team’s technology is part of the expanding field of Point of Care (POC) testing. Defined as diagnostic testing done at or near the point of care, POC tests are run nearby the patient. Common examples include Covid-19 rapid tests, home pregnancy kits, and glucose monitoring tests. Point of Care testing can be done more frequently and empowers patients to take control of their own care, resulting in a higher quality more efficient treatment plan. These tests are also crucial in the emergency room. In 2014, I had an emergency craniotomy due to a subdural hematoma, which put me on a week long seizure carousel. The doctors dosed me with multiple anti-convulsants, which they had to monitor closely, to make sure they were therapeutic but not toxic. Staff tested my drug levels repeatedly, taking blood samples from my inner left elbow. They jabbed my arm so many times, eventually the needle stopped working. To this day, I can’t have blood drawn from my left arm. The ER staff and I would have loved to have a simple saliva test to determine my drug levels!

            Would you rather wait several days for blood test outcomes, or share results obtained from a saliva sample with your doctor within minutes? Kudos to the OSU researchers, working behind the scenes to perfect effective efficient technology that can empower patients. Although they are unsung heroes we don’t usually hear about, their efforts can have mighty impacts on patients with epilepsy. And a second shout out for POC testing’s expansion efforts. Hopefully the OSU’s technology will eventually be available to patients, so they can test their Tegretol level at home, and later other anti-convulsants’ levels, as well.  According to Dr. Westland, it will be long time before saliva testing for other medication types is available, as not all drugs are detectable in saliva. Those that are may not be measurable using the OSU-created electrochemical sensor, but I am still celebrating it. The research brings the field a step closer to accessible at-home testing, which advances patient self-empowerment.

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[i] https://medicalxpress.com/news/2022-11-sensor-saliva-key-people-epilepsy.html