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Host: There are many kinds of seizures and they vary from person to person. But not everything that shakes is a seizure. So today, we're joined by Dr. Selim Benbadis to break down how to recognize what's shaking and why. Dr. Benbadis is the Director of the Comprehensive Epilepsy Program at the University of South Florida and Tampa General Hospital.

Welcome to MD cast by Tampa general hospital, a go-to listening location for specialized physician to physician content and a valuable learning tool for world-class health.

Dr. Benbadis, is the misdiagnosis of seizures common?

Dr. Selim Benbadis: Yes. And thank you for having me. Yes, the misdiagnosis of seizures is common. Most large medical centers, including academic centers have an epilepsy center because seizures are very common. Epilepsy affects about 1% of the population, so you can see it's a lot of people. And approximately a third of patients that are sent to an epilepsy center for difficult seizures turn out to not have seizures and have been misdiagnosed. So you can see that it is often misdiagnosed and that can have serious consequences.

Host: And then there are also are mild seizures where there's no shaking, right?

Dr. Selim Benbadis: Yes, absolutely. Some seizures are very mild and just brief pauses and staring and some are very severe and consists of a whole body convulsion, what's generally known as a grand mal seizure. So really it's a spectrum. They can vary. Seizures can be very subtle and some can be very dramatic.

Host: If there is shaking and it looks like it could be a seizure, what's the most effective way to pinpoint what is going on?

Dr. Selim Benbadis: Well, it can be tricky even for physicians. There are many non-epileptic episodes of shaking that can be mistaken for seizures. The best thing is really a good description by the witnesses and even better these days is a cell phone recording of the episode in question for the neurologist to be able to look at. But even the neurologists, if they are not specializing in seizures and experienced in looking at seizures and seizure-like events, can be misled by what they see. So ideally, the way to be absolutely positive that an episode is a seizure is a combination of a video recording and an EEG recording, the brainwaves at the same time, the video of the event and simultaneously the brainwave recording at the same time.

Host: Wow, a cell phone recording. But how often is that able to happen?

Dr. Selim Benbadis: Not often enough. But we do encourage people to, when possible, capture some of the episodes on the cell phone video. Obviously, it's easier said than done because the episodes can be short and people are panicking, but if they really try, oftentimes, we can get some sort of recording and it's very helpful. You can imagine it's more helpful than having the witness, usually a loved one, trying to remember and describe the episode. So we really try hard to get those cell phone videos. In fact, we just published a paper recently showing that if we get a good cell phone video recording of an event, the diagnosis we make based on that video is most of the time correct.

Host: Who makes the video? Can the patient ever make a video of their own seizure?

Dr. Selim Benbadis: No, almost never. They will be out of it or unable to. So it's usually the loved ones, you know, the parents, the spouse, friends, people who are around.

Host: So technology really comes in handy in these cases. It helps you make a better diagnosis.

Dr. Selim Benbadis: Yes, it does.

Host: What are the causes of these seizure symptoms or seizure-like symptoms if it's not a seizure?

Dr. Selim Benbadis: So the most common that we see at epilepsy centers are what we call psychological seizures. They go by different names: psychogenic seizures, psychological seizures, functional seizures, dissociative seizures, and these are basically a response to stress. In the old days, it was also called conversion disorder. And so they really resemble epileptic seizures. They can be very dramatic or they can be mild or, as we discussed before, staring episodes, for example. But they are entirely emotionally triggered, stress-related if you will, and they will not respond to anti-epileptic medications, which is usually the reason they present at an epilepsy center because they have tried one or a more anti-seizure medicines and the anti-seizure medicines don't work because these episodes are not epileptic seizures.

Host: So tracking down the cause is really going to help dictate our treatment steps.

Dr. Selim Benbadis: Very much so. And furthermore, anti-seizure medicines have side effects, like all medications. And so not only they will not work for emotional or psychological seizures, but they will cause side effects. So it's really not a good combination, which is why the general rule is that if seizures don't respond to standard treatment with one or two seizure medications, they should be evaluated further to pinpoint the real diagnosis. And that's when we find out that 30% of patients like this turn out to not have epileptic seizures and instead have psychologically-related seizures.

Host: I'm just wondering, in such a stressful world that we live in, are these psychogenic or functional seizures more common these days?

Dr. Selim Benbadis: Well, not really. They've always been. This number of 30% have refractory seizure referrals end up to be psychological. It is really pretty solid. Usually, it's stress, deep-seated stress, not stress of everyday life, if you will, but more remote traumas in childhood and adolescence. So they're not particularly more common now than they were five, ten or twenty years ago, that this percentage of 30% is pretty solid and stable.

Host: When is it appropriate to order the imaging you talked about, EEG, for example, after one of these incidents? And which imaging options do you choose?

Dr. Selim Benbadis: So I wouldn't put it under the category of imaging, it's really what we call neurophysiology, so recording of the electrical activity of the brain. Anybody who presents with at least a seizure will have as a standard of practice at least what we call a routine EEG. That's a very short recording, 20, 30 minutes. That's a brief sample in time of brainwaves and that can support a diagnosis of epilepsy. But the next step, when the patient, when and if the patient doesn't respond to standard treatment with medications, is what we call prolonged EEG video recording, which is when we do days of monitoring on video and on EEG to capture the episodes in question. And that is going to give us seizure specialists the two aspects I mentioned earlier, the video, what does the episode look like and, at the same time, the brainwaves, what do the brainwaves look like. And we put those two together and then we can determine if it is epileptic indeed and, if it is, what kind, focal seizures, localized seizures, coming from where or is it coming from the entire brain, et cetera?

Host: So there are epileptic seizures, then there are the functional or psychogenic seizures that look like epileptic seizures. But once we have the information about what kind of seizure, what are some solutions to help us spot triggers and symptoms so we can treat it accordingly?

Dr. Selim Benbadis: So for seizures that are epileptic, epilepsy in other words, if seizures are localized and if they don't respond to seizure medications, there are surgical procedures that can help, again, assuming that the seizures are localized or focal, there is a single focus that we can take out if you will and alleviate the seizures. If their seizures are generalized or they are multiple foci, then there are other options such as neurostimulation, for example. And there are three ways of doing that these days. Some intracranial, some extracranial, some more invasive than others, but the good news is we do have options once we have determined that the seizures are indeed epileptic. If the seizures are psychological, that's obviously an entire different situation. And the treatment of those relies on psychotherapy and antidepressants or other medications. Those should be handled by mental health professionals, psychologists and psychiatrists.

Host: So there are a host of therapeutic options. What's the best way to approach a treatment plan?

Dr. Selim Benbadis: The best way is to obtain a clear diagnosis from the beginning. Sadly enough, for patients who end up having psychological seizures, it takes on average seven to ten years to get to that correct diagnosis and they've usually gone that long misdiagnosed as epilepsy and taking several seizure medications. So the answer to your question is if the seizures don't respond to the initial and basic treatment to get the diagnosis confirmed and verified, getting the proper correct diagnosis is the key to getting proper and effective treatment.

Host: So can the wrong treatment be detrimental or just not effective?

Dr. Selim Benbadis: Mostly not effective. Detrimental, yes, in the sense that if you take seizure medications and you don't have any epileptic seizures, you will still get the side effects of these medications. Now, luckily the seizure medications we have these days are of low toxicity, if you will, and the side effects are more annoying and inconvenient than dangerous, things like dizziness and fatigue and double vision and nausea. Occasionally, they have serious side effects, but for the most part they don't. So it's more lack of effectiveness, lack of relief and mild side effects. I wouldn't say there are dangerous side effects for the most part.

Host: And is there new technology? It sounds like there's some upgraded medications out there now. Are you seeing new technology for treating seizures?

Dr. Selim Benbadis: Yes. So there are better medications that are very effective and less toxic than what we had ten, twenty years ago. And there are new technologies that help pinpoint where the focus is and allow for surgery when the seizures are focal. And there are also big progress in the area of neurostimulation. We know that stimulating the brain in various ways can alleviate seizures. It doesn't usually eliminate them, but it will lessen them, make them less frequent. And neurostimulation treatments don't have the side effects that medications do, again, fatigue, dizziness, double vision, et cetera.

Up until about five years ago, we only had one way of doing neurostimulation for epilepsy, that was vagus nerve stimulator. And in the last five to ten years, we've had two other modalities, deep brain stimulation, which you may know is also used for Parkinson's and tremor. And also another one called responsive nerve stimulation. And these can really give us more options other than medications and surgery.

Host: Seizures can be awfully scary. What do you tell your patients to keep in mind about seizure?

Dr. Selim Benbadis: You're right. They can be scary. And for people who have at least severe epilepsy, we try to educate their families and their friends on what to do and not to do, the reality is most seizures, even the big one, the grand mal, as we said before, the full body convulsion, usually ends on its own. And all you have to do is really keep the patients safe, try to prevent them from hurting themselves with a fall or with choking, so you turn them on their side. The seizure will end on its own 99% of the time. And we don't put anything in the mouth, by the way.

Host: And what can you arm patients with in terms of what to do or expect or feel about those seizures?

Dr. Selim Benbadis: The key is to listen to your doctor's advice. Be compliant with medications. The number one cause of breakthrough seizures in patients who have epilepsy is to skip medications either accidentally or because they don't want to take them. So being compliant, being honest and truthful with your doctor, telling us what is really happening. If they don't like the medications, there may be some other options or some other ways. To not stop medications abruptly. And we talked already about the value of cell phone videos for us to be able to see the seizures in question.

Host: So be honest, be vigilant. That's certainly helpful.

Dr. Selim Benbadis: Yes. And be compliant with the medication regimen. Compliance. Take it as prescribed.

Host: Doctor, it's reassuring to know you're on the case. Thank you for your time and this information.

Dr. Selim Benbadis: Thank you for having me.

Host: Thank you for listening to MD cast by Tampa general hospital, which is available on all major streaming services for free to collect your CME. Click on the link in the description for other CME opportunities, including live webinars on demand, videos and local events offered to you by Tampa general hospital, please visit C M E dot T G h.org.

I'm your host, Amanda Wilde. We hope you join us again next time.