An epilepsy diagnosis usually occurs after an individual has suffered several unprovoked seizures. The diagnosis is then confirmed by a test known as an electroencephalogram (an EEG for short). However, there are cases in which individuals experience symptoms similar to those of an epileptic seizure without any of the unusual electrical activity detected in the brain. This phenomenon is known as a non-epileptic seizure (NES). While the physical signs and symptoms of NES may be similar to epileptic seizures, these patients do not respond to anti-epileptic drugs and therefore require different treatment options. Up to 20% of those diagnosed with epilepsy actually have NES.1
This webinar educated viewers on how to recognize the signs, symptoms, and history associated with the presentation and diagnosis of NES, how to discuss the diagnosis of NES with patients and families to enable acceptance of treatment, and identify the management options available for patients with NES and their families.
The webinar content is intended for everyone, including persons with epilepsy, their friends and family, and caregivers.
1. Krumholz A, Hopp J. Psychogenic (nonepileptic) seizures. Semin Neurol. 2006;26:341-350.
Q&A Transcript
It seems like epileptic seizures may come and go, based on the experience of our audience. If none-epileptic seizures reoccur, are epileptic seizures are also likely to reoccur? There seems to be an interest in understanding that connection, if there is one.
Dr. Curtis LaFrance: So we follow people over the course of time, and what we found, interestingly, is there can be periods… what we call periods of quiescence, or quiet periods, where there’s no seizures. This can be for epilepsy or for non-epileptic seizures. In taking the history, in talking with people, we’ll say… They’ll come back, and they’ll say, oh, I just had a flurry of seizures again. This could be epileptic or non-epileptic seizures. The question is, anything different recently?
More times than not, what we’ll hear is, well, actually, I was getting ready for a final, and I pulled an all-nighter. And then after the final, I had the seizures again. This could be for epileptic or for non-epileptic seizures. As you’re aware, sleep deprivation is one of the ways that we actually induce seizures, whether epileptic or non-epileptic seizures. So I’ll see what we’ll call environmental changes. That can be after a period of a quiet period, and then a flurry again, or recurrence, sometimes environmental. Sometimes it can be physiologic changes in the person.
I see this from kids, to adolescents, to adults, I see this with other medications being added, bodily changes happening, all kinds of things. And then the physiology changes, and that has an effect on the way that the medications that the individual is taking is processed, what we call the pharmacokinetics and pharmacodynamics in the in the system. So a few different ways that seizures might recur.
Could there be age-related factors, from childhood to adulthood, that can induce more non-epileptic seizures? There was also a question about whether trauma, for example, having wisdom teeth taken out, can that induce? That’s a pretty big stressor in a young person’s life. So it sounds like that, yes, those certainly can influence the occurrence of non-epileptic seizures.
Dr. Curtis LaFrance: Yes. You said a very important word there, you said stressors in their life. So I’ll hear this from some people, they’ll say, but doc, I wasn’t even stressed, and I had the seizure. So I’m not talking about stress-induced seizures, I’m talking about life stressors contributing to the formation. What I mean by that is, sometimes it’s not in the ramped up period, where a lot of things are happening in life, or somebody just had a procedure, or a surgery, or something like that. They do happen postoperatively. I’ve seen them coming out of anesthesia, non-epileptic seizures. But also, after procedure, like wisdom teeth extraction… But it also happens in what I call the letdown period. What I mean by that is, I’m on the beach, and I’m with my family, and it’s wonderful, and I had a seizure there. What’s that all about doctor? So sometimes people, when they’re in the ramped up stage, they’ve got their defenses up, and then they’re when they’re in the letdown stage, then their defenses are down, and that’s where the seizure may occur. So there’s not a one-to-one relationship of, I was stressed out, I had a seizure. It could be in different types of environments. So I refer to life stressors, life events… we’ve all got life events.
One thing that people hear, is that we’re not seeing an EEG signature, but it’s because the the seizure is occurring deep in the brain, and we just can’t pick it up. How would you respond to that?
Dr. Curtis LaFrance: I would say there are some seizures that… There are some locations, or foci, in the brain that elude scalp EEG signal. So what I mean by that is if you’ve got a what we call mesial temporal, or some frontal lobe seizures, epileptic seizures, they actually… you can have the epileptic seizure, and the scalp EEG is not going to pick up that abnormal brain cell firing, epileptiform activity. So in that case, it’s not that it’s not epilepsy, it’s that the focus eluded the scalp electrode. So we’ve got a clue there, though.
Just because you haven’t had a normal EEG doesn’t mean it’s not epileptic seizures. We’ve got a clue, though, and we use the term semiology, ictal semiology, and all that means is the physical characteristics of the seizure. There are certain ways that frontal lobe epileptic seizures present, characteristically, that differ from psychogenic non-epileptic seizures. Even though both of those might have scalp negative EEG, we can look at the ictal semiology, the physical characteristics of the seizure, and we can make a comparison.
That’s why you heard me say earlier, the right history, with the right witnessed seizure, with the right EEG, those are the ways that we get the documented… That’s how we get documented non-epileptic seizures. If we have the seizure characteristics, even though it’s a scalp negative EEG we may say, hmm, this looks more like frontal lobe epilepsy than it does psychogenic non-epileptic seizure, just because I’m watching the seizure myself. That’s the importance of the video EEG.
How do we find providers were trained to provide these therapies in our states or regions?
Dr. Curtis LaFrance: I would say start with your local epilepsy center, send them an email and say, do you have people who are trained in treatment for non-epileptic seizures? Now, that doesn’t mean that they were trained with taking control of your seizures workbook, they may have their own approach. What I showed you was just one of a number of approaches. So this is not the be all and end all for everybody. There may be places around the country, who say yeah, we’ve got somebody who’s been treating people for 20 years, and they use this approach.
I would say start with your local epilepsy center, your local epileptologist. If there’s a neuropsychiatry department, sometimes they’ll do overlap brain and behavior, and you can contact them. Those are the main resources… I would say start locally. And then, sometimes people will email and they’ll say, do you have somebody trained in Michigan? Oh, yes. Well, there’s actually Dr. Baim, who’s trained in Michigan, and this person’s in Stanford, and this person… If you’re talking about treatment with the workbook, then that’s how that’s listed.
To start with the epilepsy center and move on from there. Of course, CURE Epilepsy is also helpful, willing to try to help find resources as well, if we can make connections. We know that this is an area of great struggle for people, and less identified providers. Another question is, are non-epileptic seizures ever a diagnosis that can be removed from a patient’s problem list? This is something that needs to be on the radar now and indefinitely.
Dr. Curtis LaFrance: I view seizures, whether epileptic or non-epileptic seizures, as a chronic medical illness.
I’m thinking now of the International League Against Epilepsy’s more recent definitions for epilepsy. Before, there wasn’t a great definition for resolved, but now there’s a category for resolved epilepsy. So just as there’s a category for resolved epilepsy, you can have a category for non-epileptic seizures. That’s not official from the ILA per se, but I’m thinking, in parallel, what’s been done for the new diagnostic criteria for epilepsy and terminology, that could also be done for non-epileptic seizures.
Here’s what I will say. Life events are still going to keep happening, life is going to keep happening. Somebody is going to get sick in the family, a bill is going to come due that you didn’t expect, the car is going to break on the day that you don’t want it. That’s always going to keep happening. The treatment that we… The tools that patients get with the workbook, they have to keep applying those tools.
The way that I demonstrate that to patients is, if they have readers, then at the end of the treatment, I’ll say, okay, read this sentence, and they’ll read it. And I’ll say, now take off your glasses and read the next sentence, and they can’t read the sentence. And I’ll say, the glasses didn’t cure you. You have to have the glasses on for you to be able to read, you have to keep using the tools for you to be able to address the stressors, the ongoing life stressors.
So people can go for extended periods… I’ve had this and people who’ve been in our prior studies. They’ve come back two or three years later, and they’ve said, the stuff came back. And I said, how are you doing with this, what’s going on in life, and how are you using the tools? And they said, life has gotten a lot harder, I just had two kids, and I’m not using the tools. I forgot about. So there’s a little booster, and that booster is the thing that helps them to get back on track to use the tools again to address life events that are going to keep happening.
People have asked about the role of psychogenic seizures, non-epileptic seizures, and post traumatic stress. I think you’ve already touched on this a bit. It’s not just the current life events that are happening, but the sequelae, as well, and using these tools to address that. Correct?
Dr. Curtis LaFrance: Yeah. So people will refer to the various comorbidities or co-occurring illnesses. I didn’t put the slide in, but you’re probably already familiar. We’re talking about epilepsy now. Anywhere from a third to a half of patients with epilepsy also have depression. Anywhere from 20 to 40% of individuals with epilepsy also have anxiety. Anywhere from a third to a half have cognitive issues with epilepsy. So, these are comorbidities, neuropsychiatric comorbidities that occur with epilepsy, very similar in non-epileptic seizures.
So you’ve got about half of the people have comorbid depression with non-epileptic seizures, about half have anxiety. 40% of civilians, and up to 70% of veterans have PTSD, as you would expect, with non-epileptic seizures. So a lot of comorbidities. So it’s not just about treating the seizure. That’s why I was saying earlier, you’ve really got to treat the whole patient.
Can there be a false diagnosis of non-epileptic seizures? Why and how?
Dr. Curtis LaFrance: The answer is yes, and it can go either way. You can be diagnosed with non-epileptic seizures, and it can be epilepsy, or you can be diagnosed with epilepsy, and it can be non-epileptic seizures. I’ve seen both of those. I’ve mentioned with one of my early distance mentors was Orrin Devinsky, and he said early on, Curt, you have to approach a patient with seizures with humility, because you can be fooled either way. So people can say, oh, well, I’ve seen that ictal semiology, I’ve seen the physical characteristics of that seizure, and that’s got to be a pseudo seizure, they said in a dismissive manner.
You know what? Number one, it’s not a pseudo procedure, and number two, it was actually a very odd manifestation of a frontal lobe epileptic seizure. Conversely, you can have somebody it’s like, wow, that’s a story for epilepsy, I’m going to treat them for two or three years with anti-seizure medications for presumed epilepsy. Nope. This was not epileptic seizures. The AED’s are not going to help the individual.
It keeps you honest as a clinician. You can’t go and say, I’ve got the answers. I wrote a textbook on it, and still sometimes I’m scratching my head saying, hmm, I wonder about this. Let’s take a tincture of time. Let’s use a tincture of time to try and figure out, let’s see what you’ve got. That sometimes is the best medicine.
Do none-epileptic seizures present during sleep?
Dr. Curtis LaFrance: The answer is yes. The devils in the details here. So, epileptic seizures can arise out of physiologic sleep. Non-epileptic seizures can occur during the nighttime, when a person is sleeping. Those are two different statements. The way that we figure that out is if both of them can occur at night, both of them can occur while people are sleeping. But what I mean by that is, we look at the tracing on the EEG. As many of the individuals know, the EEG changes when we’re in sleep and out of sleep stages.
So what happens is, we’re watching somebody, and then there’s an arousal, so they become awake, out of sleep, and then they have their non-epileptic seizure. That’s how we see that. But we really need the EEG that corresponds to the video to be able to say, oh, you know what, there was an arousal, so they were awake, even though it was at nighttime, when they were sleeping, and it was a non-epileptic seizure, as opposed to literally coming out of physiologic sleep and treated to a seizure. More times than not, it’s going to be epilepsy.
Do you have to have regular events in order for them to be classified as non-epileptic seizures, or can very infrequent events still be characterized as such?
Dr. Curtis LaFrance: I’ve seen people who have them once a year, and I’ve seen people who have 30 in a day. So I wish it was that simple, it would make my job a lot easier. But no, it’s never that simple. So we really have to pay attention to how often are these occurring? When are they occurring? In the workbook, we have a thing called a seizure log, and that’s where the individual really pays attention to their symptoms. So every day, they’re documenting, I had one seizure at 12:00 PM, 12 noon, in the kitchen, after I was preparing breakfast, and it had this effect on me. So we get them to start paying attention, whether it’s an epileptic or non-epileptic seizure.
And then when they start to pay attention to what’s happening, and what might be a precipitant to the seizures, then they can use some of the tools to go back and say, when I have my aura, number one, I want to get to a safe place, first thing, I want to let somebody know, if I can, if I have the ability to do that, and then I want to use some of the tools that I’ve been learning to apply, to, hopefully prevent the progression of the seizure into the full blown seizure. We’ve seen people with epilepsy and with non-epileptic seizures be able to take that approach.
There’s a project called Project Uplift. Is this is something that’s similar or different to the workbook?
Dr. Curtis LaFrance: Yeah. So Project Uplift is a great self-management tool that was created by the Managing Epilepsy Well Network, some of my colleagues and collaborators, who were funded by the CDC, the Center for Disease Control and Prevention. So Project Uplift addresses depression and epilepsy. This addresses the seizures and the comorbidities. So it’s an inverse of the approach. They can both affect quality of life and improve quality of life, but the approach is a little bit different with Uplift, as it is with ours.
The other thing that I say with our workbook is, it’s not a self-help book. So it’s to be done in concert with a clinician who knows how to treat people with seizures. So Uplift, you can get trained… or rather the clinician can get trained, and then be able to work with individuals with epilepsy. That’s for Uplift. They’ve got a number of other things that Managing Epilepsy Well network uses, whether it’s Hopscotch, which is used for cognition or thinking problems that can be associated with epilepsy. Yeah, a number of great resources that the MEWN has through the CDC.
So eye movement desensitization reprocessing therapy. Tell us about this.
Dr. Curtis LaFrance: Now, EMDR is the acronym for that. People with histories of trauma can use EMDR to reduce some of their trauma-related symptoms. There are some case series that have been done for EMDR in individuals with non-epileptic seizures that showed a reduction in seizures. Those weren’t controlled studies, so we can’t attribute causation to say, well, that’s what made it go down. I’ve got a number of patients with trauma histories, who say that EMDR was the thing that really helped me.
Vastly, I’ve had people say, you know what, I started doing it, and it didn’t really help. Nothing that we do in medicine is 100% effective, but I can say that some of my patients have anecdotally said, this has really helped me.
Do these programs work for kids, as well? How do you include family members in this process?
Dr. Curtis LaFrance: Yep. It has not been studied in children 18 and younger, or rather, under 18. All of our clinical trials have been in 18 and older. So I’m only speaking from the published data. What I can say is, anecdotally, I’ve had a number of people say, yeah, I used the workbook with my 16-year-old, and it was fine. So when you say kids with epilepsy, are you talking about neonates, are you talking about 18-year-olds? That kind of thing.
When people ask me, hey, can it be used with kids? I say, it can be used for kids who have some self-awareness, and who have some maturity. For those who might be in their tweens, they might not be ready for some of the ideas or the concept. But I’ve had some adolescents, who were very mature and had a lot of insight. So there’s not a statement about it, it can only be used from this age to this age. There are people who do want to do a clinical trial in kids using the workbook, but that hasn’t been done yet.
If there’s nobody in the area in somebody’s region that’s an epilepsy specialist, what can they do? What can this person do? How can they find either remote resources, or is that possible? There are there lots of people in rural areas, or unable to get to an epilepsy center and see a specialist. What do they do?
Dr. Curtis LaFrance: They keep being an advocate for themselves.
Here’s what I mean by that. I tell people, my patients and family members, you are your best advocate. I’ll hear statements like doctor, can you write me a letter, I’ll say I can, but I want you to write the letter, and I want you to write the letter to your doctor, your hospital, your congressman. I want you to write letters to the licensing boards. The reason why I say this is because I live in two different worlds on a number of fronts, so in neurology and psychiatry. I live in two different worlds at the same time. In the VA and in the civilian world, I live in two different worlds at the same time.
So interestingly, with the VA system, being trained in telemedicine, I can treat veterans around the country. I go to my office in Providence, Rhode Island, and I see veterans all around the country, because the VA is a national system. So, one of the reasons that people can’t treat across state lines is because for me to treat somebody in Georgia or Arizona, I have to have a license in the state of Arizona, and I’m not going to get 50 licenses to be able to do that. So that’s why I’m saying, lobby. Go to the boards and say, you know what, telehealth has been helping people around the country and around the world, let’s make sure that people who have specialties can treat people, or people who are primary care can treat across state lines, and not have that burden of the system that exists in the civilian world. That would be a way to really push the envelope, which I’m a big fan of.
So that’s what I would say, keep being an advocate for yourself, but also keep asking around. A lot of times people will say, well, I’ve got a local clinician, they’re familiar. I view us in medicine as eternal students. So some people will say, I’ll see you, and I’ll read the workbook, and we’ll work through this together. That’s another option, is have the local people, whoever it is, to get equipped using the resources that are available. But I would say, like we’ve talked about earlier, Epilepsy Foundation, CURE Epilepsy, American Epilepsy Society, CDC, those are all places that have information. Sometimes you’ll see websites that will say, here, local clinicians. Keep advocating for yourself, is what I would say.
Are non-epileptic seizures less dangerous to the brain than epileptic seizures?
Dr. Curtis LaFrance: People will ask, am I going to get brain damage from these? What I will say is that the effects of recurrent epileptic seizures… Sometimes people who have certain types of epileptic seizures, they can drop their oxygen level, and they can become hypoxic, and that can actually affect the brain, as you’re aware, we don’t see those same oxygen level drops in people who have generalized tonic-clonic non-epileptic seizures. So over time, we don’t see the same brain energy risks that may be associated with some types of epileptic-seizures that we do with non-epileptic seizures.
The information contained herein is provided for general information only and does not offer medical advice or recommendations. Individuals should not rely on this information as a substitute for consultations with qualified healthcare professionals who are familiar with individual medical conditions and needs. CURE Epilepsy strongly recommends that care and treatment decisions related to epilepsy and any other medical condition be made in consultation with a patient’s physician or other qualified healthcare professionals who are familiar with the individual’s specific health situation.