Managing Dual Diagnoses with Tiffany and Chris Kairos

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is The Brain & Life Podcast.

Dr. Correa:
Welcome back to the Brain & Life Podcast. Now, here together, we have met and interviewed many different community members from social media, whether it's about neurologic conditions or other topics. Katy, what are some of the most important or interesting things that you've learned from others on social media?

Dr. Peters:
Oh my gosh. The myriad of cat videos I could share with you that I like watching... And cats and kittens [inaudible 00:00:45] is, like, one of my favorites. There's always a new kitten happening, so I feel like that's always exciting to me. But I would say I really enjoy any kind of organizing hack, particularly on Instagram, and when I learn it and if I can incorporate into my daily life... I recently reorganized my pantry and my refrigerator, and it was really based on what I saw on Instagram. And it isn't really about products; it's more about hacks. Oh, another really good hack was how to fold a fitted sheet. That was really good.

Dr. Correa:
So some inspirations that come back into your own space, that's good. Not just all being in the phone.

Dr. Peters:
Yeah, it's not all on the phone. You actually use it. And I'm just like, "Ah." If I can convince my husband that it was a good idea, it's even more special. But I think the recipes are great. I think it's a great way to share what's out there. Kristen Faith is just amazing, and her pasta pomodoro is on major repeat in my house. How about you?

Dr. Correa:
Well, I definitely picked up recipes, lots of ideas... Just those different things to explore with. I love taking a look for inspirations as we try to figure out more, like, brain health recipes, recipes that are based off of the Mediterranean or the Mayan diet, but maybe take inspiration from other cultures. Sometimes, I'm just trying to figure out, like, "Oh, I need to make a change," or get rid of a jacket, or get something new. I might look for some fashion ideas. Or even just challenging myself to improve my sleep patterns. Some of the things I'm doing for my own health and wellness, I try to take the cues and inspiration for things that come back to my daily life, and sometimes even the cues that people will share about reminding us to get off social media, read a book or a magazine, rest your eyes from that blue light and explore the creativity in your brain, or just even get outside.
So today, we welcome back Tiffany Kairos to the podcast, who's been an advocate online and in different social media platforms for improved awareness around epilepsy. And more recently, she's also been sharing her experience with both her medically refractory focal epilepsy and also now non-epileptic seizures. She's also joined on the podcast today, and in this discussion, by her partner Chris, as we talk both about his experience in the essential role of care supporters and partners in navigating these situations.
Welcome back to the Brain & Life Podcast. Now, today, we're getting to go back to one of our previous guests and check in. So for our loyal listeners, you may remember, back in 2023, we heard from Tiffany Kairos. She's an epilepsy community advocate, lives with epilepsy, and is the founder of The Epilepsy Network or T-E-N -- TEN -- where she has dedicated her efforts to increasing awareness and understanding of living with epilepsy across many social platforms. And today, we'll be hearing from both her and Chris about their lives, her epilepsy management, and her recent diagnosis in addition to her epilepsy -- a functional neurologic disorder.
Thank you so much, Tiffany and Chris for joining us here today.

Chris Kairos:
Thank you.

Tiffany Kairos:
Thank you. Thank you for having us.

Chris Kairos:
It's good to be here.

Dr. Correa:
So, maybe you can help catch us up. So for our listeners, and if you didn't get a chance to listen to our past 2023 episode, whether or not you live or know someone with epilepsy, although you probably do, please check that out. We're going to be building on that discussion with some more information today.
But Tiffany, since 2023, you've shared publicly that you were diagnosed with functional neurologic disorder, or FND. That's a condition that can involve a variety of symptoms and is thought to involve changes in the brain network rather than a structural change. What symptoms led you to get more evaluation, and how was it explained?

Tiffany Kairos:
It is definitely something new to me. I'm still learning. At first, we thought Chris and I, my husband, we thought that I was having a stroke. The right side of my body went numb; my right hand, my right foot... The right side of my face started to droop and started to go numb. And I wasn't sure if I was having a stroke or if it were symptoms of a seizure. So I went to my husband, Chris, and asked him to help me.

Chris Kairos:
Yeah, it was definitely odd, just as she was saying, as it was drooping down the side of her mouth. That was the most concerning thing for both of us because, obviously, that's one of the very first things you think of is: "Oh, could this be a stroke?" But we later noticed that not only was it kind of drooping down, it was actually pooling down on her mouth. Not really drooping, but pooling. So that was something that we kind of realized, and we're like, okay, something's not right here. And yeah, we had to get ready and leave to go to the emergency room, basically, to be on the safe side of things.

Dr. Correa:
And this was a completely new symptom. You hadn't had this in relation to one of your seizures or after a seizure or with a headache. This was just, all of a sudden, a new thing for you?

Tiffany Kairos:
I had never experienced this symptom before in all my 17 years of living with epilepsy.

Dr. Correa:
Wow. Had either of you had anyone in your family before this that had similar symptoms or a stroke that made you think of that first? Or what from the community told you to think of stroke first?

Tiffany Kairos:
No one else in my family had ever experienced this or lives with this condition. Epilepsy or FND. No one that I had spoken to lives with this, I mean, has experiences that I'm aware of. So this was new for me.

Dr. Correa:
Wow. And living both with epilepsy and a functional neurological disorder, I imagine, on top of everything else that people living with epilepsy might notice or its impacts can, added to that, make more day-to-day decisions tricky. How do you, the both of you, the care team that you work with, tell the difference between an epileptic seizure and a functional episode in the moment?

Tiffany Kairos:
Well, I had to go to the hospital, and they had to do an EEG and a VEEG test to determine whether or not it was seizure activity or not. And when I would have these episodes, as I would call them, they weren't showing up on the EEG or the VEEG as seizure activity.

Dr. Correa:
So then, while you were there at the hospital, they were able to see several examples of you having the symptoms and it not being related to seizure?

Tiffany Kairos:
Yes.

Chris Kairos:
It was a very strange experience when one of the epileptologists and the EEG reader walked into the room, and they said, "Yeah, these are non-epileptic seizures." And when they said, "These are non-epileptic seizures," in our brains, that didn't register because we were saying, "How can you have a non-epileptic seizure?" It was completely new to us. And that's where it kind of began, where we had to start to dig in and ask questions and just do our own research and things like that. Then we got a little bit more acquainted with what FND is, and also, they had mentioned PNES, which is a form of FND, that we found out. So, learning that there were such seizures that were not actual seizures -- non-epileptic seizures -- was a whole new kind of epiphany, I guess, for us.

Dr. Correa:
And this was after they had already done a new MRI picture of your brain. So in that way, they were able to tell, "Okay, and also was not a stroke, there wasn't a tumor, there's no bleeding." So you were reassured in that way.

Tiffany Kairos:
Mm-hmm. That was reassuring. They ruled all that out.

Chris Kairos:
They ran a gamut of tests, I mean, at least 50 tests of all different types, and ruled out some of the more severe fears, I guess you could say.

Dr. Correa:
And so then, once you were there, they determined that it, all of a sudden, just go away?

Tiffany Kairos:
No, I mean there were times when I would have none. No activity. And then it would come back. It would ebb and flow. It was an ebb and flow.

Chris Kairos:
In total, she was being monitored in the hospital for, I think we figured, about 19 days in total over the course of a month. So there was a lot of observation of what was going on. And there were times, actually, that it almost seemed like it was on a schedule. The FND would show up. These episodes, as we call them, would show up around a certain time of day, stick around for about two hours, and go away. And we noticed this pattern at first. That's what got us really interested in saying, "What's going on here? It's got to be something because it's on a clock. It knows the time every day to come and leave." And it has evolved over time since then. We've seen it go through different transitions.
But yeah, that was something interesting there, as well, during the stay, is just trying to pin down what it was. And over the time of them monitoring those things, that's where they came with the determination of saying, "We really believe that it's possible that this is FND." And then that got more and more affirmed as time went on, as they continued to observe and things like that.

Dr. Correa:
And did they suggest to you, or have you been able to work out, kind of an action plan of what to follow and do at home or when there's a reason, or for what, to go to the emergency department?

Tiffany Kairos:
They would like me to -- and this is something that I'm pursuing -- to work with a psychologist to do cognitive behavioral therapy to try and navigate this situation.

Dr. Correa:
And Chris, have you been able to pick up or learn any cues that you look for that can help you predict how to support Tiffany with an episode or when it's different and it's clear and you're concerned it might be a seizure, so that way you can calibrate the response that's needed?

Chris Kairos:
Yeah, typically one of the biggest differentiations, I guess, between these episodes and a seizure, that I notice immediately, is that she's conscious the entire time. Completely cognitive, completely aware, completely sharp throughout the entire thing. As where, with a seizure, that's not the case at all. So that alone is something you pick up on right away. But as far as knowing what to do when they're coming on? Really, with seizures, I can kind of tell if something is going to happen before it happens. I can kind of sense something, or I see something, some kind of mannerism; it's easier to pick up on. With FND, it kind of just comes on out of the blue, really, or it just kind of creeps in, in a sense. And then once she's dealing with it, it kind of depends on what the type of symptom is that determines how I respond to it, basically, and how I can support her.
If it's a physical sensation of some kind that she's not really able to shake, if it's numbness in the hand or foot, things like that, there's typically not a lot I can do to help in that case, except for just be moral support, emotional support. There has been times where we've talked about trying to trick the brain, in a sense, which has worked a couple times, where, let's say her arm was numb, and she's saying, "I can't feel it, it's stiff," or whatever. I say, "Well, without thinking about it at all, just kind of plan for a future moment here where you abruptly reach out, grab your water, and take a drink with that hand."
And that actually has worked a couple times in the past where she doesn't think about it. Like I said, I say, "Don't think about it at all before you do it. Just act quick, on impulse, wait a few minutes and just do it when your brain is not expecting you to do it." And it kind of breaks this cycle, I guess, of whatever the neural pathway is, right? To where it's kind of allowed her to shake that off and be like, "Oh, okay, yeah. There. I can move my hand. I can feel my hand, I can move my arm." So it's kind of getting the brain back on the right track.
And then as far as other things, she's experienced heaviness of the chest, kind of heaviness of breathing, things like that sometimes. And in those cases, we can just sit together and kind of just be there with one another and do some breathing together. And it's good for me too because I get anxious when she has these symptoms. So we're still learning as we go. That's kind of where we've come so far.

Dr. Correa:
I think we can hope, for all of us, that we all continue to learn.

Tiffany Kairos:
Yes.

Chris Kairos:
Absolutely.

Dr. Correa:
And now, in the last two-ish years, and/or more recently, what's changed in your epilepsy management since we last spoke?

Tiffany Kairos:
We've been working on just tweaking the dosages. My seizure activity has decreased, amazingly enough. Since I've developed FND, I've noticed that my seizure activity has decreased. It's strangely wonderful.

Dr. Correa:
Interesting.

Tiffany Kairos:
And I also started a new medication.

Dr. Correa:
So maybe some relation to medication in terms of the change in your frequency. I wonder, has this change all been also while you've been trying to do things to manage the FND?

Tiffany Kairos:
I'm not sure.

Chris Kairos:
Well, the medication change came after the FND diagnosis.

Tiffany Kairos:
Yes.

Dr. Correa:
Yes. Okay. I was wondering, also then, about the things that you guys are working on to manage the FND symptoms or symptoms that may be related to the FND. I wonder if those also end up managing triggers for you on the seizure side.

Tiffany Kairos:
Breathing techniques have definitely been a big one that have helped me a lot. And I've also used some cognitive behavioral therapy tools. Those stimulation tools, the-

Chris Kairos:
They're called sensory-

Tiffany Kairos:
Sensory tools, excuse me.

Chris Kairos:
... items.

Tiffany Kairos:
Yeah, the sensory tools, items, which are really, really nice and helpful when I'm feeling stressed out or anxious.

Dr. Correa:
FND can include a lot of different symptoms. Each person -- speaking of, again, being a very individualized thing -- can have a very unique presentation. It can be changes in speech, and movement changes, muscle, sensation. It can be things that very much look, visually, like other seizures.
So Tiffany, for you, so far, what therapies or other supports have you been adding on? And you said you're going to be going into cognitive behavioral therapy, you're using some breath work and sensory tools, have you also been doing any physical therapy or speech or occupational therapy or other education or counseling support?

Tiffany Kairos:
These are things that I'm really looking forward to beginning.

Chris Kairos:
We're still semi early in the journey of trying to navigate where the best resources, I guess, for some of these things are, as well.

Dr. Correa:
Yeah, and so what we'll be talking about is how this complement of options are given, and they're tailored, often, to the types of symptoms that a person has and the things that we think might be helpful or that they are interested in pursuing in added therapy.
But for you, Chris, are there other things that you are doing for yourself and to support each other as a care supporter? Because you also can benefit from your own therapies.

Chris Kairos:
I know. When they recommended therapy for her, I've always said, jokingly, half jokingly, like, :Oh, I wish I could do therapy too." Because, I mean, who can't benefit from some good [inaudible 00:18:25] but I actually have not been doing any therapy of my own. Maybe in the future I would like to do that, but for me, a big thing is just, is my faith. I rely on God a lot for my strength. But then we also have a pretty supportive family as well, so they're also a big help. And just, we've been married for 17 years as of just a couple days ago.

Dr. Correa:
Oh, congrats.

Tiffany Kairos:
Thank you.

Chris Kairos:
Thanks. And we've been through so much together, so many different ups and downs, and I mean, end-of-the-world-type situations to the best things in the world situations and everywhere in between. And so, I just know that... Also, we help support each other, and we know that no matter how hard things get, we've gotten through so much in the past, so it helps us to have strength to get through the things that we're going through. Now, it doesn't mean it's not hard still, but that's just something where we've learned to navigate a lot of things, so we're still doing that. And we support each other, and I try and find ways to get stronger as we go and find support in other areas as well.

Dr. Correa:
Yeah, I mean, I think the community and the family support are such essential things in so many situations, particularly in both of the conditions that you're each managing in support of Tiffany. And self-care is a key component to that, and so, as you said, for you, a lot of that strength comes from your faith. Are there more things that you do that sustain you as a care supporter in self-care?

Chris Kairos:
My basic go-to is, besides my faith, which I haven't gotten a chance to do a lot lately for other reasons, but I like to exercise regularly. That has been a huge thing for me because not only is it just good for my overall body and health, but it helps my mind. I'm able to relieve a lot of tension and things like that. I'm not a stressed person, per se, on the outside, but I think I just carry things on the inside. So going to the gym and exercising, moving my body, that helps me to kind of, again, alleviate those stresses. Trying to do my best to eat healthy. These are, like I said, kind of, basics.
Also, trying to carve out as much time as I can here and there to do things that I love. I love making music, so I try and incorporate that because right now that is my therapy. It's always kind of been my therapy. So when I say I'm not doing therapy, I kind of am, kind of am not. So it's also something that kind of brings me peace when I do it. So those things, in addition to the other things before, are pretty much my toolbox of what I use to stay sustained.

Dr. Correa:
Yeah. I think we've defined what fits now, and then work towards the things we want more of that fit and add to our battery, and be very aware of the things that take away.

Chris Kairos:
Yeah, and we always try and soak up the good moments too. So when an episode isn't happening or she has a spurt, a couple hours of feeling good or even a full day maybe of feeling good, we soak that all up completely and just take advantage of it and enjoy that time. And I think that helps to re-energize us too, kind of recharge our batteries a little bit.

Dr. Correa:
That's good. And how have each of you talked about Chris's role and your clinic visits and the shared decision-making related to your medical conditions along with your advocacy, and how has it changed since the FND diagnosis?

Chris Kairos:
So as far as my role with medical decisions and things like that, I don't make any final decisions about anything. I always leave final decisions up to her because it's her life, her body. We share this life together, but at the same time, it's her body, and she has to make those decisions for herself. So I just kind of learn what I can learn and try and make an educated theory or opinion about something and lay it out the best I can, and if it makes sense, thankfully we have a good relationship where she trusts me and I trust her, and I'm not going to... I'm not quick to suggest things off the cuff if it doesn't make sense or just because I want something to be a certain way. That type of thing. So I try and do my due diligence to serve her best with whatever opinions about her medical needs that I have, if that makes sense.
And then as far as everything else with the community or with her work, she's amazing. She gets up every day and has a passion for what she does-

Tiffany Kairos:
I do.

Chris Kairos:
... and I just support that, and I do it in different ways. I'm a creative guy; I do design and branding and all that, so I help with a lot of getting the brand together and just making sure, like, business aspects of it, even though we don't operate too much as a business, it's more of just a community, but I just make sure that all the other things are kind of in place. But she just goes to town every day. Again, it's her passion.

Tiffany Kairos:
Soon as my feet hit the floor, I'm ready to go. I'm so excited. I'm just so passionate about what I do, every single day.

Dr. Correa:
That's so great to hear, and I'm glad that it's still charging your battery to put that effort and that passion forward.

Tiffany Kairos:
Oh yeah, it always will.

Dr. Correa:
And looking back over the last few years and your earlier profile in the Brain & Life magazine and the podcast appearance, what do you wish clinicians and families better understood about navigating life with both now epilepsy and functional neurologic disorders?

Tiffany Kairos:
That there is so much more than what you see on the surface that a patient goes through so much than just that diagnosis.

Chris Kairos:
Yes, it's definitely multifaceted.

Tiffany Kairos:
Yes, it is. It really is.

Chris Kairos:
I always say, you can see somebody on the surface, and you can be with them and spend, whatever, 15 minutes, an hour, two hours, but what you've experienced in that time period is nothing compared to if you would stay with them for, like, a month. And you see these things that they go through, these ups and downs and everything in between that as well, and it's not just physical; it's emotional, it's mental.

Tiffany Kairos:
Mental.

Chris Kairos:
It's a whole lot of things.

Dr. Correa:
And are there any resources that either of you have found helpful that you would point others to?

Tiffany Kairos:
Oh yeah, definitely. Well, of course, my website, theepilepsynetwork.com. I have to point that out. We have over thirty-thousand followers from all over the world, and we provide a lot of resources to learn about epilepsy.

Chris Kairos:
And the community's amazing. I mean, it's all different walks of life. Everything from patients to caregivers to healthcare providers and all of that. So you get some good, really good discussions started up on there sometimes. And also, I have to say, her blog, Rise Above Epilepsy, that is also good. That's full of inspiration. The Epilepsy Network is more based on support and awareness and all the wonderful things that come with that, but yeah, her blog is all of those things, but it's also just uplifting and very supportive and practical at the same time.

Dr. Correa:
Well, I really appreciate both of you taking the time and the energy and this moment that you have right now of good health to share with us and to connect with the listeners.

Chris Kairos:
Yeah, thank you.

Tiffany Kairos:
Thank you so much.

Dr. Correa:
Are there questions you have about living with and thriving with one of many neurologic conditions? We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record an audio message and send it to blpodcast@brainandlife.org. And of course, you can also reach the Brain & Life team at brainandlifemag. That's M-A-G.
I really appreciated Tiffany and Chris's letting us in, really, and opening up to everything that's going on with how Tiffany has managed her medically refractory focal epilepsy, her surgical management approaches, how she's engaged with the care team, where she's getting her support, and then really brought Chris in in helping the two of them understand functional seizures and where that adds to her management.
And because of that topic, today, I'm really excited to welcome Dr. Curt LaFrance Jr. He's an MD, MPH, he's inaugural director of the Neuropsychiatry and Behavioral Neurology at Rhode Island Hospital. He's the director of the VA Mind Brain Program, and the professor of psychiatry and neurology at Brown University. He's a world-renowned expert on functional non-epileptic seizures and epilepsy and bridges both neurology and psychiatry with caring for patients in-clinic and also in research. And he's co-authored the Taking Control of Your Seizures Workbook and co-edited the Non-Epileptic Seizures Book. And these together have helped bring many of the tools that are helping people around the world manage these situations and reduce functional seizure episodes.
Well, thank you so much, Curt, for joining us here today and helping us bring this knowledge to everyone in our community.

Dr. LaFrance:
My pleasure. Thank you for having me.

Dr. Correa:
So let's start, really, we have not had as much of an opportunity to talk about the variety of functional neurologic disorders here on the podcast and with our audience. So for listeners unfamiliar with a functional neurologic disorder, or FND -- sometimes the initials are used -- or functional non-epileptic seizures, can you tell us how you would explain these two?

Dr. LaFrance:
Sure, I'd be happy to. I explain it to patients and to other clinicians that a functional neurological disorder is a neurological manifestation of an underlying psychological conflict or stressor, which is a life event, and it's also a behavioral expression of neural network dysfunction. And to break that down, as a neurologist and a psychiatrist, this is brain and mind. It's two sides to one coin. It's not either/or it's both/and. And so sometimes life events can occur that may set us up for the expression of these symptoms. And with the research that our team has done and others, we found that there are brain connection, brain connectivity changes in patients with functional neurological disorders. They can appear any way.
I'll tell people in my clinic, any way that a neurological disorder can present, a functional neurological disorder -- or what used to be called a conversion disorder -- can present. So for instance, you may have a seizure that looks like epilepsy, and there's no abnormal brain cell firing on EEG. You may have somebody who has a tremor, and you do the workup, and it's not Parkinson's disease. You may have somebody who has a weakness in an arm or a leg, or speech abnormality. You look at the brain imaging; there's no stroke. These are the ways that symptoms and signs present for functional neurological disorder.

Dr. Correa:
Now, and you said, "A life event." And to clarify, is this typically or always a recent or a present life event? Is it life events in the past, current, or even the possible anxiety of a stressor of a future possible life event? How does that come into that perspective?

Dr. LaFrance:
The answer to your question is yes. So, it's all of those that you've just said. When when we do a comprehensive neuropsychiatric evaluation, we do a full history on the patient, on the individual, and we look at things in the past, and we look at things in the present, and we look at what we call "developmental history" or your upbringing, and it can be any of those things, like you were saying. So it may be something that happened when somebody was younger, it could have been something that happened more recently, and it could be the concern about something that's going to happen in the future. All of those together, we call those "the three P's." Predisposing factors, precipitating event, and perpetuating factors.

Dr. Correa:
And I know I might be asking the unanswerable question, but why is it, and who may end up having both epilepsy and functional seizures?

Dr. LaFrance:
It's a great question. We're still trying to figure that out. No physician has a crystal ball to be able to predict who's going to or who's not. But what we can say is that there are certain risk factors that may set somebody up for having both epileptic and non-epileptic seizures or functional dissociative seizures. People who have had, as you know, for epilepsy, somebody might have a genetic form of epilepsy. They may have had a head injury that created a lesion. They may have had a stroke or a tumor, something that acts as what we call an "ictal" or a seizure focus. That's where they get the epilepsy. And sometimes it's idiopathic. We don't know where it comes from. With non-epileptic seizures or functional dissociative seizures, we found that people who have these histories, these predisposing factors, with an exposure to a more acute event, they may be more likely to develop the non-epileptic seizures or the FDS.
An example may be somebody who had... I'll tell you about a patient who I saw recently. Had some trouble in school, had a learning disorder, then ended up having some relationship issues, with a history of some traumatic events, and then they had a car accident. And after that car accident, it was a closed head injury; wasn't a severe TBI -- traumatic brain injury. The combination of those ended up creating the environment for the person to develop a different type of seizure. So they had the history of epilepsy, but with the past events and the acute event, that ended up... A new type of seizure manifested itself.
So they went to the monitoring unit, the seizure monitoring unit, where the events were captured with video EEG, where you put the electrodes on the person's brain, and you look at brain waves, along with capturing the event, the seizure that they had, and with that event, it showed no evidence of abnormal brain cell firing. That gave us a positive confirmation diagnosis of non-epileptic seizures, or functional dissociative seizures, along with the known history of epilepsy. That's a very typical case that I'll see of somebody who has both.

Dr. Correa:
For our listeners, if you're coming to this episode and haven't had a chance to listen to some of our past episodes about epilepsy, both focal and generalized, please go back and check out some of those episodes where we talk some more about seizure types, how the diagnosis is made, some of the abnormalities that are found in the brain when there is that abnormal electrical activity. Or there's great, also, resources at the Brain & Life magazine and website.
But here, I wanted to then add to that last question. So Curt, do we have yet any understanding or sense that a functional dissociative seizure, or these functional events, are different in people who also have epilepsy versus those who don't have a diagnosis of epilepsy?

Dr. LaFrance:
As you state, you can have these functional dissociative seizures with or without other neurologic conditions. So in about 10% of people who have epilepsy also have non-epileptic seizures. So you'll see an overlap. It's not a lot, but it's enough that we, as neurologists, when we ask our patients, "Tell me about your seizure," I help people, help clinicians to say, don't just ask about, "Tell me about your seizure," "Tell me about your seizures." Plural. And they may say that one of them, I fall on the ground from being asleep, and I wake up and I've got bruises all over myself, and I've bitten the side of my tongue, and there's blood in my mouth, and I've urinated on myself, and my family member watched me convulsing. And that's typically what we would see for generalized tonic-clonic or convulsive epilepsy.
Now, they may describe, "Well, that's one type of my events, but I've also got another one where I'll be watching something on TV, and my eyelids will start to flicker and flutter, and it's like a blip, Doctor," is something that they'll say. They kind of lose a period of time briefly, but they maintain their posture; they don't fall over, they don't convulse, and then they're back again. And they'll say that the family member observed that their eyes were glazed over, and then they'll come to. Fortunately, we can capture both of those on video EEG, and we can see that there's epileptiform activity with one, and there's not with the other.
Now, just to be clear, sometimes you can have whole body convulsions. That's not generalized tonic-clonic epileptic seizures. Those can still be non-epileptic seizures. I'm saying that because all of these ways that seizures present, we're able to distinguish between epileptic and non-epileptic seizures with EEG. That's very helpful. As far as to be able to just take a history and say, "Well, you had learning disorder, so that must be non-epileptic seizures." We can't say that, because that occurs in epileptic seizures also. We can't say, "Oh, you had a head injury. That's got to be epilepsy." Not necessarily. That can be non-epileptic seizures also. You can do neuropsychological testing where you do cognitive testing, and you can have some lower scores on some cognitive measures in both epileptic and non-epileptic seizures.
One thing that we can say that we found is when comparing groups of people with epileptic and with non-epileptic seizures and people who have both epileptic and non-epileptic seizures, there tends to be a higher level of what we call "psychiatric comorbidities" in the patients with non-epileptic seizures as compared to patients with epilepsy. What I'm talking about there is there might be higher levels of depression, higher levels of anxiety, higher levels of post-traumatic stress disorder in the patients with non-epileptic seizures. But as you know, just because any of those diagnoses might be there, that doesn't mean that it might not also be epilepsy. So that's why we don't really use those just to differentiate between epileptic and non-epileptic seizures.

Dr. Correa:
Now, you've mentioned EEG, or electroencephalogram, and video EEG. So, what are the tools that you think are really essential to helping diagnose and differentiate these two situations and conditions?

Dr. LaFrance:
We start in medical school with the basics, and the basics are take a good history. That's one of the most essential tools. And then after we take a good history, then you do a good exam. In my case, as a neurologist and a psychiatrist, we do a full neurologic exam and look for if there's any abnormalities on what we call the "elemental neurological exam." And we also do a mental status exam, which is looking at the, kind of a psychiatric examination. Then we look at labs that have been done. Many times people will get referred from all over to see me, and they've already had three or four prior evaluations, and I tell them, "I don't want you... You've already had the million dollar workup. I don't want you to have to have a two-million dollar workup."
So we look through all of the laboratories that they've had. That might include brain imaging, like an MRI. That might include an EEG, like we've talked about, or video EEG. That might include some blood work to look for other forms of other conditions that might cause seizures. It might include an EKG, or electrocardiogram, to look at heart rhythms that might cause some type of seizure activity in people. And then we put all of that together and create what's called a formulation, a diagnostic formulation, and it's the story. Putting all of that together, those are the, quote, unquote, key components that we use. So it's not just one. If you had one EEG and there was an abnormality on it, that doesn't necessarily mean, "Well, it's got to be epilepsy," or, "It can't be." We put all of those together in context.

Dr. Correa:
And earlier, you were sharing with us how you both explain to other clinicians and to individuals in the community or patients about "What is a functional seizure?" But when you're explaining it to that person who has come to you for this full evaluation, and now you have more clarity in their diagnosis, whether it's in the clinic or maybe in the epilepsy monitoring unit after all this has been put back together, is there anything that you add to that explanation in a plain language way that maintains trust in engagement in your care and in your assessment?

Dr. LaFrance:
You asked a really important question because a lot of times in medicine, we might have the diagnosis, but the communication of the diagnosis is so essential. And to do that in a non-judgmental, non-pejorative, empathetic, compassionate manner is so, so key. Part of what our roles are is as physicians. And so to do that, I try and use the simple language that I mentioned before, and I also... I've spent time with the patient, hearing their story, so I tell the story back to them.
And I let them know, "Here's what I heard you tell me, you and your family member who told me about some of your history also, here's what I saw from the chart from the review, and what I found on exam and in the lab workup. If there's anything, as I'm giving you the summary back, that I got wrong, let me know. Correct me, so that I can get the story right." Many times after they hear that I have heard them, and I tell them back a story that seemed like chaos to them, but now there's actually a narrative -- it starts to come together -- that can be very therapeutic in a lot of ways for people. So I call that a diagnostic therapeutic.
And at that point, then I can say, "Now with all that information, that leads me and gives me a high level of confidence in saying this is a functional neurological disorder. Have you heard of that before?" So again, I'm putting it back on them, and then they'll tell me, "Oh yeah, I read something online." Or, "They told me something about some kind of a something in the emergency room, but I was out of it, and I don't know." And I'll say, "Tell me what your understanding is." I let them teach me what they know, and I'll be able to fill in any gaps. That helps with the acceptance, the understanding, and helps with their engagement many times.

Dr. Correa:
Now, I want to fully admit for our listeners, we've thrown around a few different terms for these things, and you've written about why the language and the terms matter and even debating in multiple different forms, both nationally and internationally, psychogenic non-epileptic seizures, functional seizures versus attacks, and so many other terms. And you've also studied care models like telehealth and veterans with functional seizures. So what terminology do you recommend today to reduce stigma and improve engagement and understanding?

Dr. LaFrance:
I just got back from the annual International League Against Epilepsy annual conference that, this year, it took place in Lisbon, Portugal. Wonderful gathering of people who care for people with seizures, from all around the world. And at that meeting, we presented a symposium on a proposal for diagnostic language that hopefully can be used to simplify and to unify the communication. That term that was proposed after years of working together with the task force, with the ILAE, is "functional dissociative seizures," or FDS. And there are people... You mentioned a number of terms that have been used and are still used. It's okay to use those terms. They're going to be used differently by different people. Some people do or don't want to use psychogenic. Some people do or don't want to use seizure. Some people do or don't want to use... Whatever the term is.
I will say that there are a couple of terms that we don't use anymore, that were used in the past. If you look back at the literature from over a hundred years ago, this used to be called hystero-epilepsy, and that was the first part of hysteria, and that became conversion disorder, which became psychogenic disorders, which became functional disorders. So that's kind of the evolution of that term over the decades. The other term... So we don't use the term hystero-epilepsy anymore, that was a hundred years ago.
The other term that you might hear, or individuals or family members might hear, is pseudoseizures. We don't call them pseudoseizures either. Pseudo, as you know, means false or fake, and these are not fake seizures. These are real seizures. They're just not caused by abnormal brain cell firing. And I make sure to have patients be aware that it's not a pseudoseizure. Those are two terms we don't use anymore, but other people will be using the other ones that you mentioned, and the one I mentioned at the ILAE conference.

Dr. Correa:
And I'll admit to my listeners, I was cheating because I was there for the presentation. And so, Curt, now you also mentioned the FDS for the full acronym, and we've used a few times the term functional seizure. So why the addition of dissociative, and why do you think that's important from your perspective?

Dr. LaFrance:
Because we live in a big world, and the conference in Lisbon, you saw the... The reason for it is because of the slide that I presented where I showed the Tower of Babel, and that's when humanity developed different languages millennia ago. So we use different language; we use different words. In the UK, they are more likely to call them dissociative seizures. That's how they have referred to them; that's how they classify them. And so we wanted to allow for that there are differences in culture and language.

Dr. Correa:
So it's about bringing the terminology together. Okay.

Dr. LaFrance:
Yes.

Dr. Correa:
And we also mentioned your work in telehealth and telehealth-style protocols. How can those kind of protocols translate into a clear home and emergency department action plan for a couple like Tiffany and Chris?

Dr. LaFrance:
I've had people who will drive, or be driven, five and six hours to come see me for a one-hour clinic follow-up treatment appointment, and then they have to drive back after that, and that's in the Northeast through a snowstorm. One of the things that has occurred with telehealth is that it's been able to reduce barriers to access, and doing so helps so that the person can be seen either in a clinic remotely that they go to, and then we connect from our clinic to their clinic, or there have been other advances that allow for direct-to-home care. And those are two slight variations, but those are ways that telehealth are delivered, both in the civilian population and in the veteran population.
The VA medical system has been amazing in that it's been a leader, a national and international leader in telehealth care for decades. So pre-pandemic, we already had a tele-seizures clinic to see veterans around the country. And so when the pandemic occurred, we were able to publish, in the moment, on a hundred patients we had already seen, talking about delivery of care, when it wasn't being utilized in the community as much pre-pandemic. Now, of course, everybody says, "Yeah, you can use telehealth," but there was some reservation back then. So it was great to have that evidence base when it was needed in the moment.

Dr. Correa:
And for our listeners, I will admit, not all of us have enough access to telehealth care, and there actually is even some concerns and questions about the limitations in access to telehealth for all of us, nationally. So if you want more access to telehealth care or you've found it helpful in the management of your condition, please advocate and reach out to your local legislators to express your concern about the importance for telehealth care.
And Curt, I wanted to take that on. So then the next thing is the action plan for the individuals or for that family. So once a diagnosis has been made, what are some practical cues that can help families, the individuals, or clinicians distinguish in someone who has known both epileptic seizures and functional dissociative seizures in the moment? And how do you develop that action plan for the types of events to avoid over- or under-treating an episode?

Dr. LaFrance:
One of the phrases that we learn in medicine, as you recall, is "Primum non nocere." "First, do no harm." And so a lot of times, I'll be in the emergency room, and I'll have to instruct some of the trainees down there. "Don't just do something; stand there." So we have the ability to do a lot of things in medicine. I can make you stop seizing. I can paralyze you with medications, and I can intubate you, and I can have a team that'll make sure that you will stop seizing, but that might not be the right treatment here. Sometimes, if you know that it's a non-epileptic seizure or a functional dissociative seizure, your calm presence is actually the best treatment in the moment.
It's not running around and adding, somewhat, to the angst of the moment. It may just be being a calm, soothing presence. So I'll have people who have seizures in my waiting room and in my office. A lot of times, in many clinics and hospitals, you would have what somebody might call a code. Code blue. And then everybody comes running in, and then EMS comes in, and then it disrupts everything. I've trained my staff and my team, "You know what? If it's a person who has known non-epileptic seizures, and it's documented in the chart because we've got it on video EEG, and we know that that's what they have, and it's different if they have mixed epilepsy and FDS, we know that it's different than their other seizure, which was documented in the chart because we've got it on video EEG, if you know how the two different seizure types appear, then you can react one way to one, and then you can react another way to the other."
The Anita Kaufmann Foundation has a seizure safety plan protocol, and they've got an acronym, B-R-A-I-N, and each of those stands for a specific way to approach the patient who has seizures. And I won't go through all of them, but one of them is make sure that the patient's safe. So if they're on the ground flailing around, don't smother them and cover them, trying to get them to stop. Actually, make sure that things that they might thrash against are moved away from them so that they don't bang an arm or a head.
Another one is don't stick anything in their mouth. There's that idea of, "Oh, they're going to swallow their tongue," and that's not going to happen. We have a connection, a piece of skin that actually connects the tongue to the mouth, and so it's not going to be swallowed, and if you stick something in their mouth, they might bite it or break a tooth or might injure themselves. So those are just a couple of things to help them be safe in the moment. But knowing how they look, the different types of seizures, that can help with that action plan that you're talking about.

Dr. Correa:
Yeah. And for our listeners, we'll include links to some examples of these seizure action plans that can be helpful. And so, briefly, for our listeners, what's the evidence for the ways to treat this? Specifically, one thing that's mentioned often is CBT-informed psychotherapy and other related approaches for functional seizures. Okay, what does that mean?

Dr. LaFrance:
That means that the most evidence, the best evidence base exists for psychotherapy, which is talk therapy. Everybody wants the magic bullet. "I want the pill that's going to make me better." In my early studies with the NIH funding that we had, we found out that medications like an antidepressant might help reduce the seizures somewhat, but it doesn't make them go away completely. So while we were doing those studies, we were developing psychotherapies.
There was a great workbook for epilepsy, interestingly, Taking Control of Your Epilepsy, by a group out in California, Andrews and Reiter, that was helping. A psychotherapy that helped people with epilepsy. I had asked for permission to modify that, and so I neutralized the term "epilepsy" to "seizures," and then I included a lot of information about psychiatric comorbidities and about the whole-person approach that we use, and that became Taking Control of Your Seizures Workbook, and it's used for epileptic and for non-epileptic seizures.
All that to say, there are different types of psychotherapies, different "modalities," as we refer to them. So you mentioned cognitive behavioral therapy. CBT is a psychotherapy, a talk therapy, that was developed by a psychiatrist, Aaron Beck, in Pennsylvania. That came after another type of therapy called psychodynamic psychotherapy, which was developed by a neurologist, Sigmund Freud. And so over the years, having done training in various types of psychotherapies, I realized there's not just one best. So we took the best of each of the individual psychotherapies, and we paired them. We targeted some of the known issues with our patients to help with their condition.
So for instance, other therapies include interpersonal therapy to help you with your relationships and communication, or things like acceptance and commitment therapy, ACT. Some of your listeners might have heard of that. There are things like distress tolerance, things like motivational interviewing. All of these are different types of therapies. They're psychoeducation, to help you know about the condition that you have. Each of those are in this workbook that we've talked about called Taking Control of Your Seizures Workbook, and all of that together is called neurobehavioral therapy. There is some CBT in neurobehavioral therapy, but it's not all CBT.

Dr. Correa:
So if someone is currently referred out to get CBT or going to be starting it or even already in it, how would you suggest they make sure that they're getting all the components of this that they may benefit from?

Dr. LaFrance:
It's not a one-size-fits-all treatment. So for some people, I've had some people say, "You know what? They told me what the condition was, it really helped to ease my mind, and I haven't had any since." That's about 10% of patients, actually, who don't have complicated histories and who have newer onset. They may have an improvement with having the diagnostic clarification, and that's great. For other people who do have other issues that need to be addressed, that's where some of the other tiers of medicine might come in, if you will, of treatment, rather. And so in this case, they would access that through your local clinician, therapist, psychiatrist, neuropsychiatrist, neuropsychologist, even neurologists. There are people around the country and around the world who've been trained in this, who even, as neurologists, are delivering neurobehavioral therapy. So your local clinician can have access to the workbook and to the therapist's guide, and they can learn it themselves.
There's some videos that are available online for clinicians in the VA, and for people who aren't in the VA, they can access those videos also to help with learning some of the approaches and the challenges. And you can get treated locally. There are people who have different approaches. Some people use different forms of therapy, and that's okay. What we're talking about is "What is the evidence base?" and this is where we use a randomized or non-randomized controlled trials. In the UK, one of our colleagues, Laura Goldstein, has done a great job with CBT directed at non-epileptic seizures, or in their case, dissociative seizures, and she found a significant reduction in symptoms at six months. And so that's another way to approach this condition.

Dr. Correa:
In your multicenter pilot trial, you showed a benefit in reducing non-epileptic or functional dissociative seizures and their overall frequency, but there were some people who got this neurobehavioral therapy or CBT-informed psychotherapy and some people that got CBT plus sertraline, a serotonin reuptake inhibitor, or an antidepressant, as one of the categories that people may know it as. How do you decide and work with an individual on the combination of this neurobehavioral therapy alongside other medications, including if they have other indication's anti-seizure medicine?

Dr. LaFrance:
In trying to develop a treatment plan, we want to look at the different, what we call the "domains." So in this case, biological, psychological, social, and spiritual. Those are the different domains of who we are in our humanity. So to do that, the biological, if somebody has depression, anxiety, PTSD, which have FDA indications for these SSRIs, then we might prescribe those. If somebody has migraines or chronic pain or a neuropathy, we might prescribe an anti-epileptic drug, which is also used for those conditions. So that's where the medication would come in, in these cases. Anti-seizure medications and a pill by itself doesn't treat the non-epileptic seizure. It might help with some of the comorbidities that we talked about. And then along with that, then we look at the psychological; that's where somebody might receive benefit from CBT or neurobehavioral therapy or other forms of therapy. And then we look at the social, the interactions that people have with their relationships and their friends and family in their work or in school. And so we might talk about doing some family meetings or family therapy to help with some of the dynamics.
And then spiritual is, a lot of times... Just this weekend I was on call, and people were presenting with their chief complaint, "I have a headache," or "I have depression," or whatever the chief complaint was. But then as we talked more, they might give you their real need in what's underlying, and many times it's an existential issue or one of those big-picture issues. And the guy, the patient, after we talked a little bit about his symptom, he told me, "When I'm really... I was anxious last night, and I didn't sleep, Doctor, because I was concerned about dying, and I don't know where I'm going to go when I die." We ended up addressing his bigger-picture issue in treatment. So that's where the whole person comes in, and that's why it's so essential to look at somebody from that BPSS approach that I talked about, that integrative medicine model.

Dr. Correa:
And I really appreciate that whole-person concept and idea, beyond just, even after the diagnosis, just counting the number of episodes or events, but really starting to talk to the metrics that matter to them in their life and aspects of what they need and the support this approach then provides them.
The last thing I wanted to bring in and add into this is Chris joined us for the interview and was sharing on his own support for Tiffany. So I wanted to get your perspective on how partners and care supporters like Chris can support those and others in this situation, whether they have a functional neurologic disorder, functional dissociative seizures, or even if they have a combined diagnosis.

Dr. LaFrance:
When people come to see me, many times they'll have a family member or a significant other with them, and they'll say, "Do you want me to wait out in the waiting room?" I say, "No, no. If your family member here, if the patient wants you here, absolutely. Come on in." Because sometimes they'll be able to provide some history and some perspective that the individual might not be able to. Now, of course, we do ask the family member or this care support to leave also so that we can have a discussion one-on-one in case there are any issues that the person wants to discuss by themselves. But sometimes, we talked about earlier, that chief complaint, people come in, "I had a stroke," or "Had a seizure." I've had some people, the chief complaint was, "They told me you're the only one who could fix me." And at that point, I'm like, "I do not have that power or ability. So, what I can do is I can walk with you as you do the work. Because if the work is going to happen, it's going to be from you and for you."
Where the family comes in, as I tell them, "I'm just one member of your care team; there are other elements to your care team, and that includes the medical, the neurologic psychiatric team here, but also your support system. If there's a healthy support system, then that's going to be your person who you go run these things that you're learning by and get some perspective because that's where you live." And so I'll tell people the three F's is family, friends, and faith. Those are really key and integral parts of the treatment team, if you will. And so, having that family member there can be very, very helpful because it can give you insight into the interactions, the concerns, and then that could be addressed.

Dr. Correa:
Well, Curt, thank you so much for taking the time. I have so much more, but I want to respect our listener's time and you for taking the time to join us here. Hopefully, maybe we'll get a chance to have you back and continue this discussion on how we can support and learn more from our community.

Dr. LaFrance:
Thank you so much for having me. Really appreciate it.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and the Brain & Life Magazine on many of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City, and online @neurodrcorrea.

Dr. Peters:
And Dr. Katy Peters, joining you from Durham, North Carolina, and online at @katypetersmdphd.

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Most importantly, thank you, and all of our community members that trust us with their health, and everyone living with neurologic conditions.

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Managing Dual Diagnoses with Tiffany and Chris Kairos

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