More than 100,000 people in Wisconsin are living with epilepsy, and the experience can be different for every person.
Movies and television often depict seizures as large, full-body convulsions. “And that certainly happens to a lot of our patients,” clinical pharmacist Dr. Barry Gidal told WPR’s “Wisconsin Today.”
But seizures vary from patient to patient, Gidal said, because the brain is such a complex organ.
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“A seizure is this sudden, massive electrical activity — like a storm that takes place in the brain … For a lot of our patients, it’s very subtle. They may stop talking, or get really confused, or look like they’re spacing out.”
As a pharmacy professor at UW-Madison, Gidal specializes in treatment research for adult epilepsy, a seizure disorder. He also sees patients in a clinical setting to manage their medications and reduce side effects and interactions.
“I would encourage people struggling with epilepsy, even if their seizures are under pretty good control — which, in my mind, means being seizure-free — but are having side effects, to seek out an epilepsy center,” Gidal said. “Go have a different set of eyes see if you’re a candidate for different clinical studies or the newest medicines.”
Despite progress in epilepsy research, Dr. Gidal said he is worried about its future because of widespread cuts to research funding.
“It’s not just the clinical studies — some of the basic science work takes years. We’ve got to understand the basic science if we want to come up with an idea for a new medicine. If the funding stops, that’s only going to impede things in progress,” Gidal said.
Gidal talked with host Kate Archer Kent about the cutting edge of epilepsy treatment and the challenge of affordability for patients.
The following interview has been edited for clarity and brevity.
Kate Archer Kent: What excites you about the hive of epilepsy research right now?
Barry Gidal: As a pharmacist, you would probably expect me to say “the new drugs.” But I think, for me, it’s two areas: one is genetics. As we learn more about what is actually happening that’s causing the problem, there’s great research that, I hope, is able to continue looking at things like gene therapy. These are in the very nascent, early stages. Also, electrical devices that can do different types of stimulation within the brain to abort seizures are really getting started. Some of them are already making it to the clinic.
KAK: I also understand that cannabis can be used in the treatment of epilepsy. What are you finding there?
BG: We use the term medical marijuana a lot. It’s very non-specific. If you look at the cannabis plant, it doesn’t just have one thing in it. Everybody thinks THC, or maybe CBD. But there’s hundreds of different chemicals. Some may be good for our brains, some may not be, but the only cannabinoid that’s been studied and now FDA approved for epilepsy is a purified form of cannabidiol, or CBD. And that’s really led to a lot of interesting new avenues of research. The purified, FDA approved form of CBD will work in a lot of different types of patients, in different types of seizures. So it’s really pretty exciting, but it’s not cannabis. It’s one molecule out of that plant.
KAK: In your research, you also learned that some over-the-counter CBD products are not correctly labeled. Can you tell us more about that?
BG: Yeah, that’s correct. That’s some work that came out of our lab and some other collaborations a couple years ago now. I mentioned there’s an FDA approved prescription form of CBD, but you can go anywhere and buy different CBD oils or tinctures — and that’s not the same thing. Here within the state of Wisconsin, we looked at lots of different over-the- counter forms of CBD that were being sold without a prescription, and we found lots of contamination. We found a lot of them had far less CBD than what the label indicated. A lot of them were contaminated with THC, which would be of concern if you’re giving this to your child to try to treat seizures or anything else. In a different study we found contamination with some heavy metals like lead. So in the over the counter world, there’s lots of concerns about the product’s purity.
KAK: Has that made you more cautious about using CBD protocols for a patient, or is the concern just in over-the-counter options?
BG: I think prescription CBD most clearly has a role and should be considered as an alternative. Right now we add prescription CBD onto somebody’s already existing anti-seizure medicine regimen. The over-the-counter stuff is “buyer beware” because I’m concerned about what other stuff is in there. Also, because of what we learned in clinical trials about the dosages that work to treat seizures, you can’t achieve the right doses without the prescription product. We also need to be mindful because CBD can cause some drug interactions. That’s my other concern — people using over-the-counter products without talking with their physician, pharmacist, nurse practitioner, etc., because it may interact with other medicines that they are taking.
KAK: If a patient is struggling to cover the costs of the medications in managing their seizures and someone’s insurance won’t cover a particular medication, are you able to work with them to find something that will work?
BG: Sadly, insurance coverage is an issue. Most neurologist offices are pretty adept at either getting prior authorizations, coupons or manufacturer rebates that are available for the drugs themselves. But it’s not easy, and it is time consuming. I also encourage patients to find a good pharmacy and a pharmacist that you can work with. A lot of times they know about some patient assistance programs that maybe the physician doesn’t. Pharmacists are willing to work with patients to try to come up with ways to help make this more affordable for patients. But yes, it’s a constant struggle.
KAK: You’ve spent so much of your career immersed in this neurological disorder. What gives you hope about epilepsy?
BG: Number one, it’s the patients. I know our patients’ lived experience, what they struggle with. It’s an opportunity to make a difference. But also the scientific and clinical community — nationally, here in the state and internationally. This is just a really amazing group of people that are really committed to helping with this disease and helping our patients. I refer to this as my extended family. They are very mission focused. (They’ll say) “let’s find a cure,” or “let’s find the most effective treatment that we can,” and “how can we also improve our patients’ quality of life?”