Inquiring About Strange Spells to Identify Epilepsy


Jacqueline French, MD, director, Translational Research and Clinical Trials in Epilepsy, NYU Grossman School of Medicine, spoke to the takeaways of a recent study of nonmotor seizures.

Jacqueline French, MD, professor of neurology, and director, Translational Research and Clinical Trials in Epilepsy, NYU Grossman School of Medicine.

Jacqueline French, MD

This is the second of a 2-part interview. To read part 1, click here.

Recently, a group of investigators from the Human Epilepsy Project published data which suggested that the earlier identification of patients experiencing nonmotor seizures might aid not just in getting those patients a diagnosis, but in preventing possible injury caused by the seizures.

These nonmotor seizures can manifest in a number of ways, leading those involved in the treatment of epilepsy to attempt to coin a phrase to help alert patients and physicians to the possibility of epilepsy as a diagnosis. The phase is the 5 S's, which stand for short, sudden, strange, similar spells.

To find out more about what needs to be done to help identify these patients earlier and some of the challenges in that, NeurologyLive spoke with study author Jacqueline French, MD, professor of neurology, and director, Translational Research and Clinical Trials in Epilepsy, NYU Grossman School of Medicine.

NeurologyLive: Do you think there's a challenge on the patient side in terms of patients being honest about their experiences, or aware that these could be potential signs and symptoms of epilepsy?

Jacqueline French, MD: I always ask the question, when somebody comes with a convulsion—and I know a lot of my colleagues do, too—about, “do you have any strange spells that are very similar to each other, that come out of nowhere?” And 1 of 2 things happens is what I always say, and it's pretty consistent. Either they look at me and go, “I have no idea what you're talking about,” or you can actually see their eyes widen and their pupils dilate, and they go, “how did you know about my spells?” And in that case, then they want to tell you about it because they've been wondering and worrying about it, but they haven't told anybody. I've had so many different interesting and fascinating explanations of what people experience. Sometimes they just say it's indescribable, but sometimes they'll say, “I see myself as a child in a past life, and I don't even believe in those things.” But that's what happens just for that minute.

There was a case that was written up in a journal a number of years ago, where during a seizure, everything that this guy saw, anybody that spoke to him, anything that he read, would turn into the same single phrase, over and over again. He couldn't get his mind off of that phrase no matter what he did. And then, of course, after it was over, he couldn't remember what the phrase was. That's a very sort of typical type of strange thing that can happen.

What would you do with that, if that happened to you? You'd go, “I have no idea what that was.” And I can guarantee you if people are reading this, that somebody is out there going, “Oh, my gosh, that's what's happening to me.” I did a radio show the other day, and that's exactly what happened. They opened the calls up on the call line, and the very first person that called clearly was having seizures.

For those non-epileptologists and those who aren't readily aware of this, how do you think they can best get involved in sort of improving the recognition of these symptoms?

It's interesting. Obviously, it would be nice to have a public awareness campaign where you go to the subway, and it says have you had an S.S.S.S.S, or whatever. I don't know whether that's going to happen or not. I think in the very end, I don't think that people have to ask that every single time that they see a patient, right? But I think if there's an annual screening or something along those lines. There are things that increase the likelihood that seizures will develop, right? Somebody who's had a stroke, somebody who's had a head trauma. In those people, yes, it probably would be reasonable, at least once a year, to ask them whether they have developed this type of episode. In a very targeted population, that could be a good approach.

It's funny how the word spreads around. If there was just 1 TV show where somebody had this type of seizure, then probably, people would learn about it. That's kind of the way people learn. It's probably going to be a multi-pronged approach.

Were there any other additional analyses or anything from this specific data readout that was as revealing or as important to you as that main finding?

Well, we're still analyzing the results of the main study, because obviously, the time to diagnosis was something that you could know as soon as the person was enrolled in this study. We finished enrollment a number of years ago, but we just finished the long-term follow-up because we wanted to follow people for 6 years.

One thing that I think is very important for people to know related to this time to diagnosis is that probably a number of my colleagues would have worried that these people who had been having so many seizures, over so long a period of time, would now become resistant to treatment. In fact, we don't see an indication so far of that. People who had been having very long histories culminating in a convulsion, or more than 1 convulsion, responded almost immediately to an antiseizure medication. That's why making the diagnosis is so critical because there we have a treatment and the treatment, in two-thirds of cases, is very, very effective. People should know about that; that this is a treatable condition. Once it's treated people can go on with their lives and nobody is going to know. You take a pill every morning, and as long as the medication is working, and you're taking your pill, you're going to be fine.

Is there anything you feel the clinical community particularly should sort of take away from these data?

One thing that we didn't explicitly say is that for a primary care physician or a neurologist, if somebody reports a convulsion, don't stop there. It's so easy to focus on the biggest seizure and not ask about whether there were other spells—S.S.S.S.S.—before that convulsion leading up to that convulsion. Again, as we already reviewed, if you ask, people will tell you. It's critically important to ask for people in primary care in neurology to ask that question.

Transcript edited for clarity.

Pellinen J, Tafuro E, Yang A, et al. Focal nonmotor versus motor seizures: The impact on diagnostic delay in focal epilepsy. Epilepsia. Published online October 20, 2020. doi: 10.1111/epi.16707
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