Tiffany Kairos on Finding Her Voice in Epilepsy Advocacy

Episode Transcript

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

Dr. Katy Peters:
And I am Dr. Katy Peters. And this is the Brain & Life podcast.

Dr. Daniel Correa:
November is Epilepsy Awareness Month. My celebration started early in October with the Chicago Marathon. I ran the Chicago Marathon as a part of the Cure Epilepsy fundraising team. I encourage you all to look for opportunities to do some of these fundraising events, whether it's a walk, a 5K, or something to fundraise for an occasion in an organization that you care about. Our team was able to fundraise over $60,000 to help support research in epilepsy. I'm really proud of this effort, and I'm looking forward to the next opportunity.

Dr. Katy Peters:
Well, congrats all around. I mean for raising that money, for running and finishing a marathon. So kudos to you.

Dr. Daniel Correa:
If you're looking for some key information about epilepsy, I really encourage you to check out the Brain & Life website. Also, the Epilepsy Foundation of America's website and the Cure Epilepsy Organization each have really great information for you about living with epilepsy if you know someone out there. It's important we are aware how common and how much of an impact it is in our community. You know, one in 26 Americans will develop epilepsy in their lifetime.

Dr. Katy Peters:
And 3.4 million Americans are impacted by epilepsy, and 65 million people worldwide are impacted by epilepsy.

Dr. Daniel Correa:
On top of that, epilepsy is the fourth most common neurologic condition, and that's behind migraine, stroke, and dementia. In this episode, we'll be having a conversation with Tiffany Kairos, and she shares her experience with her epilepsy diagnosis and how she's helped advocate for the community living with epilepsy and more awareness on social media. Stay tuned to the second part of the episode so you can hear from our medical expert, Dr. David Spencer.
He's the editor of Our Brain & Life book series. Through that book series, you can find much more in-depth information from expert neurologists on key topics related to epilepsy, concussion, migraine, dementia, and much more. Now, make sure you follow and subscribe to the podcast so you don't miss our upcoming episode with Dr. Casey Albin. She joins to share the key points that you and your family need to be aware of in terms of decision-making in the intensive care unit and after other neurologic emergencies.

Dr. Katy Peters:
And further episodes will be an author and humorist, Samantha Irby, who will join us to share her experience in being a caregiver to her mother, who was diagnosed with multiple sclerosis, also known as MS.

Dr. Daniel Correa:
And we're back here with the Brain & Life podcast. Today, I'm happy to be speaking with Tiffany Kairos. She's an epilepsy community advocate and the founder of the Epilepsy Network or TEN, where she's dedicated her effort to increasing awareness and understanding of life with epilepsy across many social platforms. Through the TEN website, her blog, and social media posts, she shares her own personal experiences with epilepsy, tips she has learned encouragement and motivation to the community living with epilepsy. She does this with videos and articles in a truly frank, open style, mixed in with some humor, but clearly speaking to her truth. Thank you, Tiffany, so much for joining us.

Tiffany Kairos:
Oh, thank you for having me.

Dr. Daniel Correa:
So I wanted to go before any of this and before the concepts of epilepsy, but really just starting for you, you were 16. What did your life look like at that time?

Tiffany Kairos:
Yeah, I was just a teenage girl trying to get through high school, worried about tests, just wanting to make sure that I passed the test with lying colors. And one night, I just was in bed, and the next thing I know, I'm being carried down the stairs, and I was in a daze, just wondering what in the world had happened. And here I had a grand mal seizure.

Dr. Daniel Correa:
So, at that time, they ended up determining and saying that they felt that you had a seizure. It was the-

Tiffany Kairos:
Yeah.

Dr. Daniel Correa:
... first one ever.

Tiffany Kairos:
First one.

Dr. Daniel Correa:
And you'd never had any other injury or anything that you understood as being a risk factor?

Tiffany Kairos:
No. No.

Dr. Daniel Correa:
And afterwards, did they tell you that you had epilepsy, or did they just say it was a single seizure and they didn't know the cause?

Tiffany Kairos:
They said it was a single occurrence. They placed me on medication, and I hadn't had another seizure for about six months. So they took me off of that medication, and I continued on with life. I didn't have another seizure for six years.

Dr. Daniel Correa:
And during those six years, did you have an understanding that there may be a risk of seizures coming back, or did you even think about it at all?

Tiffany Kairos:
Not at all. Not at all. I had no understanding of what epilepsy or seizures were. I just knew that I was better. I was fine. And so on my way I went.

Dr. Daniel Correa:
So, at age 22, a few months after you and Chris had been recently married and starting your life together, things changed again. What happened?

Tiffany Kairos:
Oh, yeah. After that four months of being married, and then seizure happens, I was diagnosed with epilepsy. Our whole world was just flipped upside down. We had to learn how to live in this way. We had to adapt to a new lifestyle.

Dr. Daniel Correa:
This wasn't a small seizure where you stared for a moment or you had some uncontrolled movement. You were driving at the time, right?

Tiffany Kairos:
Yes, yes. This was a very unique situation. As I was driving, my vision faded to black, and I had just a small amount of time to slip my foot onto the brake, but I could not press down on the brake. And I drove through a couple of front yards and through a fence and crashed into a tree. I had had another grand mal seizure.

Dr. Daniel Correa:
And at that time, once the emergency medical services got there, were you okay?

Tiffany Kairos:
Yeah, thankfully. Thank God I had only suffered whiplash.

Dr. Daniel Correa:
And at that stage and before that, did you have any understanding of the risk of seizures while driving?

Tiffany Kairos:
Oh, no. Once again, I was oblivious to what seizures were, what epilepsy was. My main focus was on just living a happily, joyous married life.

Dr. Daniel Correa:
So I imagine then everything about the discussion, not only just talking about medicines again, but just seizures and epilepsy must've been a shock for both you and Chris.

Tiffany Kairos:
Oh, yes. We had to discuss how I was going to live daily life. What I needed to set aside. I needed to think about what I needed to do in order to avoid provoking a seizure. I had to stop working. And that was difficult because when you like to be socially interactive, it's tough when you have to pull back and stay home and think about those different things.

Dr. Daniel Correa:
Now, in part, that's a little different because there are a good number of people that just starting on one or two of the right medicines, they're able to get right back to many of the other things that they were doing before, working, driving, and so on.

Tiffany Kairos:
Yeah.

Dr. Daniel Correa:
What was your experience that caused you to be so limited after your initial diagnosis and figuring out how to get things managed?

Tiffany Kairos:
Everybody's epilepsy journey is different. Mine happened to be where it was difficult to manage with medication, so doctors had to do a lot of tweaking with medications and trying out different medications to manage my seizures so that I could have a productive life and do the things that I enjoy doing carefully. So it wasn't easy.

Dr. Daniel Correa:
In terms of provoking or what we often will talk about as triggers of seizures. On your journey of managing and finding better control of your seizures and your epilepsy symptoms, what did you end up learning might be possible triggers for you?

Tiffany Kairos:
When it comes to discovering what my triggers were, it was a matter of stumbling upon them. For instance, I can't drink caffeinated beverages. Sleep deprivation can cause me a seizure. Of course, this happens with everyone. It's unavoidable, but stress can provoke a seizure for me.

Dr. Daniel Correa:
And along the way, some people experience different types of seizures. You've mentioned already the term grand mal or bilateral tonic-clonic seizures.

Tiffany Kairos:
Mm-hmm.

Dr. Daniel Correa:
Did you also have other types of seizures?

Tiffany Kairos:
Yes. I have one other type of seizure called a complex partial seizure. And this is where, for me, my vision goes blank in my right eye, and sometimes I'm unable to speak, and sometimes I am able to speak. I can never tell, but it lasts about maybe five to 10 seconds.

Dr. Daniel Correa:
And so these are the focal types of seizures that start in one specific area of the brain, and depending on where it starts, each person's symptoms can be different.

Tiffany Kairos:
Exactly, yes.

Dr. Daniel Correa:
And sometimes, when people have a difficult time controlling and managing their seizures, there's a discussion about possibly considering or evaluating for surgery or other types of interventions to help maybe reduce the number of medicines or improve the seizure control. How did that discussion go for you when you were talking with your doctors?

Tiffany Kairos:
After trying multiple types of medications and tweaking the levels of medication, we were having a difficult time managing them. We had a discussion with different doctors, but I just wasn't ready to visit that option yet because I wanted to explore other therapies before going to that point. But once I did visit that point and I felt ready to do so, I went to my husband and I said, "I think I feel comfortable enough to really pursue this option at least to see if I'm a candidate."

Dr. Daniel Correa:
And what was your experience going through the evaluation process, the steps? You know, staying in the hospital to record your seizures and all the other tests that they had you do?

Tiffany Kairos:
They had me do what's called an SEEG, and I had to stay in the hospital for approximately 21 days to monitor me and my brain waves and seizure activity, and they just wanted to see how my brain reacted. They wanted to try and locate where my seizures were originating from and to see if in that area, wherever it may be, if it were able to be removed safely.

Dr. Daniel Correa:
It's a procedure that can be done in this process for many different people and depending on where their seizures might come from or to help us figure that out. Doesn't always take 21 days. You're definitely on the longer end there.

Tiffany Kairos:
That is the most funny thing for me. I laugh about this all the time. My seizures, I feel like they caught onto what I was trying to do, so they kind of behave. I did everything that I could with the doctor's permission to try and provoke a seizure, but nothing worked.

Dr. Daniel Correa:
And after all that, they review all the different tests and results that you have with a team of doctors. Did they feel that you were a candidate, and what kind of options did you consider?

Tiffany Kairos:
They located where my seizures were originating from, and the area was a bit risky and a little bit too risky because if they were to remove that area, doctors informed me that it would damage my vision, my speech, and my memory. So they didn't feel comfortable enough.

Dr. Daniel Correa:
It's a decision and it's unique for each person, so I completely understand. And epilepsy is the condition, and seizures are one of its symptoms, but it's well beyond seizures. And you talk a lot about this. Let's go beyond just that seizure symptom. What impacts you the most beyond bilateral tonic-clonic seizures or the focal seizures?

Tiffany Kairos:
Having epilepsy isn't just a physical experience. It's also an emotional and mental experience. Sometimes, a person can feel depressed or can feel frustrated, even angry at times, because they don't know why it's happening or it's disrupting their day. They can't complete a daily activity or whatever it is that they're doing. It's just one of those things where people need to be aware that it goes beyond just having seizures.

Dr. Daniel Correa:
Yeah, so there's that loss of control and some loss of independence that you can have from the unexpected nature of when they can happen. And with many conditions, there's the term stigma that's brought up. What are some of the stigmas of living with epilepsy that you have encountered?

Tiffany Kairos:
A lot of people assume that a person with epilepsy can't have a fulfilling life, and that's simply not true. People can work, people can do all sorts of things if their seizures are well managed with medication or whatever therapy that they are currently working with.

Dr. Daniel Correa:
I think also important always to remember that even someone whose condition is not well managed that doesn't mean that they aren't also a person that enjoys and laughs and cries. Along all this, you started the Epilepsy Network. Tell us some about the things that empowered you to lead this idea and move forward.

Tiffany Kairos:
Well, when I started out, I felt lost, scared, and alone. I knew nobody that had epilepsy or had ever experienced a seizure. And it wasn't until I hopped on social media and met others that had epilepsy that I felt really inspired to want to educate people about epilepsy and seizures and helped them not to feel alone.

Dr. Daniel Correa:
To be there as that friend that you didn't have or that point of reference and information and support. And now, if you could go back, I mean you and your parents, I'm sure, were quite caught off guard when you were 16 and you had that first seizure. But if you had wanted to tell other parents out there with a teenager who's had their first seizure, is there some key point of information or support that you would offer?

Tiffany Kairos:
There is such a terrific support group on social media, plenty of support groups as a matter of fact, where you can connect with others, parents, patients, even those in the medical field who will gladly embrace you and help you to better understand the condition and what to do, how to navigate life, and how to even connect with your child.

Dr. Daniel Correa:
So tell us then, Epilepsy Network website and where do we find you and the epilepsy network on social media,

Tiffany Kairos:
The Epilepsy Network you can find the website at theepilepsynetwork.com, and you can also find the Epilepsy Network on Facebook and Twitter and Instagram. And I'm on Facebook, Twitter, Instagram, TikTok, Pinterest. I'm everywhere.

Dr. Daniel Correa:
And that's @TiffanyKairos.

Tiffany Kairos:
@TiffanyKairos.

Dr. Daniel Correa:
Thank you so much for sharing with us and everything that you're doing to help other people understand managing and living with epilepsy.

Tiffany Kairos:
My pleasure. Thank you so much.

Dr. Daniel Correa:
Is this episode leaving you wanting more? Get the latest tips on healthy living and management for more than 250 neurologic conditions by visiting brainandlife.org, where you can learn more about neurology every day powered by trusted neurologists. In her story, Tiffany really expressed to us how transformative the diagnosis of her epilepsy was in her 20s. She eventually was able to translate her experiences into a personal purpose to help others living with epilepsy. Now moving on to our medical expert. I'm here with the Director of the Comprehensive Epilepsy Center at the Oregon Health and Science University, Dr. David Spencer.
He's been involved in many areas of neurology and epilepsy education, and I've had the pleasure of working with him on the Brain & Life editorial board. He's also the author of Brain & Life's Book on Navigating Life with Epilepsy, a comprehensive guide for adult and adolescent people living with epilepsy and their family members. Thank you, David, so much for taking the time to speak with us today. So Tiffany had her first seizure at 16 without any clear related illness or prior head injury and then had her second seizure while driving at age 22 and luckily only hit a tree, avoided any major injuries to herself. But how often is this kind of presentation what you are seeing in your adult practice?

Dr. David Spencer:
Yeah, I think that her story is pretty common, but I'd also say there's a huge variety, and I think when someone has a first seizure or a second seizure, both for the person who it happens to and for their care team, one of the first thoughts is, "Why did this happen?" I think it's a natural thought, and it does guide how we think about treatment.
So it is one of the first things we look at, and sometimes the cause is very apparent. Maybe it's someone who has a known traumatic brain injury, or they have a known brain tumor or something that's very apparent, and other times it's not. And we may look very hard in some cases and just not find an underlying cause. That's not unusual.

Dr. Daniel Correa:
From my own practice and some of the patients we've seen here at our center, it's a challenge after that first seizure really giving of sense to someone, what's the actual risk of future seizures, or was it truly a random single event? At age 16, she had that first seizure, and really, it seems like she had very little sense that there was any significant risk or anything else that she had needed to be aware of in the rest of her life. How do you approach that discussion after the first seizure when you're not really sure what direction things are going?

Dr. David Spencer:
Yeah, it's a tricky one because there's no single test that will really allow us to predict very accurately what the risk of future seizures is. As anyone who's been through this will ask a lot of questions both to the person and maybe to the family or friends who've been around them, just trying to tease out if there are any underlying factors from earlier in life history that might put them at higher risk for seizures, any family history of seizures, any sign of prior injury to the brain, things like a brain infection or a traumatic brain injury, as I mentioned before.
So some of these things may be clues. We'll often do some diagnostic testing also. So typically, getting a good picture of the brain usually with an MRI is really important just to see if we can see anything abnormal with the structure of the brain or anything even very subtle that might be irritating the brain in a particular area that might lead to seizures. And then, finally, most people will go through a brainwave test called an EEG or electroencephalogram, and this, you would think, would be very helpful at predicting whether someone's going to be at risk for seizures.
You run this test, and you can see the electrical activity of the brain. But one of the ways that epilepsy and seizures are very difficult, I think everyone with epilepsy would tell you this is the unpredictability of it and the variability. So just as you said with Tiffany, she had a seizure at 16, didn't have a recurrence until 22. There may be certain times, and sometimes those times are many days and many months where the brainwave activity is calmer, and we may just not see any sign of it on testing.

Dr. Daniel Correa:
I think that's such an important point that we learn in our practice, but also something for the community to be aware of. A normal EEG does not necessarily mean you don't have epilepsy. In her situation, again, like at age 16, there was that first seizure. As you said, we do some of these tests.
But I imagine for any parent of a 16-year-old and likely even that 16-year-old, that first seizure is such a shock and challenge, and there can be a whole question of whether they're in the primary care office or the ER. What tests need to happen immediately, and what is sort of the timing if things are going to be done as an outpatient? How do you recommend to people approaching this what needs to be done really urgently, and in what situations?

Dr. David Spencer:
I would say most commonly, as you said, it's usually a big shock and frightening for people, honestly, when a first seizure happens. So I would say in most situations, people that have a first seizure do often end up in the emergency department. It's actually a good spot to be for a first seizure because some of the key assessments concerning things can be done quickly. So typically, people will have some blood tests done just to see if there are any major abnormalities with the blood chemistry or something that is disturbed that could have triggered a seizure.
You can get some brain imaging done quickly. Some of the kind of most immediate emergence causes can be excluded, like bleeding in the brain or something that would really need immediate intervention and treatment and hospitalization. If those first worrisome causes can be excluded, then some of the other testing, like an EEG test, can happen often in the next week or two.
Afterwards, hopefully, people can get connected with a neurologist in a fairly short time period, although we know that's sometimes a challenge as well to get that expert guidance and counseling about diagnosis. "What happened? Why is this happening? Do I need to go on treatment?" Just the tip of the iceberg is the kind of questions that spill out when something like this happens, especially if it's someone who's been healthy before, and this is a big change in how they think about themselves.

Dr. Daniel Correa:
And let's go on then to that point of, okay, now someone like Tiffany has had that second seizure, so it starts to become clear that they likely have epilepsy and need treatment, or after that first seizure, you have enough results that show that they have a high enough risk that you want to talk about both the diagnosis of epilepsy and treatment right off the bat. This is beginning a long relationship probably with you and or who the neurologist is going to be, but what do you focus on educating and counseling them on in those initial encounters?

Dr. David Spencer:
Traditionally, the diagnosis of epilepsy meant having two unprovoked seizures separated in time, and by unprovoked, I mean not a obvious, very, very strong trigger like someone with diabetes whose blood sugar goes very, very low, someone who has an alcohol use disorder and is having alcohol withdrawal. Anyone can have provoked seizures in that setting, but it is also possible to make a diagnosis of epilepsy and also justify it or very appropriate to go on treatment in some cases after a single seizure if the risk of having future ones is predicted to be relatively high.
There are so many things that I think we want to and need to talk about after that first seizure, and in that first meeting, that is one of the challenges, and things can kind of get crowded out. I often find just scheduling a second follow visit close by is really, really helpful because sometimes you just can't get to everything. I also ask people to try to prioritize what are the two or three most important things they need to know before they leave the room just to make sure we're addressing those and not leaving too many loose ends. Having some printed materials to go home with is great because it could be things that we didn't have enough time to explore in as much detail or just a reinforcement of things we talked about because, in that first meeting, emotions are often high. It's stressful.
Really, really encourage people to bring someone along with them to that first visit to just hear the discussion, maybe take notes to provide support as well, all those things. So we certainly absolutely want to be covering diagnosis. Are we sure this was a seizure? Not to leave behind other really important issues like safety, certainly driving looms large for people who are drivers and want to know whether it's safe to resume driving or not and other aspects of safety just to avoid the risks of having injury if a seizure occurs.

Dr. Daniel Correa:
I wanted to ask you if you can help clarify two terms people in the community may come across, a focal and generalized, and sometimes that's used to refer to either the epilepsy or specifically the seizures. What do those mean for the person who's living with epilepsy?

Dr. David Spencer:
In the clearest terms, I can describe a focal seizure as it maybe implies is a seizure that starts in a particular focus, a particular part, or maybe region of the brain and then may stay confined to that area. So the person may have relatively mild symptoms from it. Sometimes, this is even called an aura, or it's what someone might feel at the beginning of a bigger seizure. And then, if the seizure spreads from that focus, if it sort of gets neighboring brain cells to start firing abnormally and spreads to different parts of the brain, it could cause greater impairment. A focal seizure, sometimes we call a focal seizure with impaired awareness.
Often, if it's spreads to some degree to both halves of the brain, the person having the seizure may have a harder time interacting with the environments, responding to people remembering what happened during the seizure, and then sometimes it can even... that focal seizure can spread essentially to the whole brain later and cause what was used to be called a grand mal seizure or a tonic-clonic seizure. So it starts focally, but it can spread to involve the whole brain and cause a more generalized appearing seizure as an endpoint of it. In contrast, though, generalized seizures we think of starting basically in both halves of the brain at the same time.
So the term generalized, we kind of think it starts in the whole brain at once. We often say that that may not be exactly true, but it's more of a coordinated onset of the seizure in both halves of the brain. So, often, it's just the person's awareness may be impaired pretty quickly at the beginning of it, and it can take different forms. Sometimes again, a generalized tonic-clonic seizure as I mentioned. So if you walk into the room and someone is in the middle of a generalized tonic-clonic seizure, it may be difficult to tell if that was a focal onset seizure that spread or if it was instead a generalized seizure that started in the whole brain at once, essentially.

Dr. Daniel Correa:
Sometimes, a certain percentage of the seizures can't be controlled with just the first few medications. How do you approach starting to have that discussion, and what are some of the steps to move forward looking for additional options?

Dr. David Spencer:
Great question. I think it's important to be thinking about it early. So, generally, the first approach to treating or preventing seizures is with medication, and sometimes, it can take some time to find the right one. So, particularly, it's a group of medications where that may be very prone to having side effects. And so finding the right fit for someone is really important, both in terms of finding something that's effective at stopping the seizures, but also something that they can tolerate and feel good taking because this is usually daily medication for many months or years often. So something that may seem like a minor annoyance if you have to take a medication, an antibiotic for a week or two, is very different when it's stretched out over a period of months to years.
So if someone is just having trouble tolerating the medications, we'll work with them and keep trying different ones to find something that is a better fit. If the medication's really not working because it's not controlling the seizures, even though you can get to good doses and good levels of the medication, we usually want to think about exploring other alternatives even after a second medication has failed. That's kind of a key landmark. If it's failed because it's not controlling the seizures, it predicts that the third or the fourth or the fifth or the 10th medication we try, it may not be effective also.
It's not hopeless with medications, but it should alert everyone to think maybe these are seizures that just are not destined to respond as well to medication, and we should be thinking about other alternatives early. So getting connected, if possible, with an epilepsy center. There's an organization called the National Association of Epilepsy Centers or the NAEC, and they have a really nice website where you can find a specialty epilepsy center in your area. And so these are centers that are equipped to not only do experts medication management but also to have the diagnostic tools or the capability to think about other options such as surgery.
If you can identify and safely remove a seizure focus to treat the seizures, neuro-stimulation devices to treat epilepsy, and kind of the whole range of different treatment options. It can be scary to be thinking about epilepsy surgery, brain surgery early on. These are not last-ditch efforts. These are not desperation therapies. These can be very, very effective ways to treat epilepsy and better to identify that and treat it and nip the problem in the bud if possible, rather than trying a dozen medications over 15 or 20 years and then finally coming around to thinking, "Okay, maybe this isn't working, and we should be looking at other options."

Dr. Daniel Correa:
Tiffany also brought up, like her experience with the car accident with her second seizure, several safety concerns in epilepsy. What are some reasonable precautions and also reassurances that you talk about with individuals and their families?

Dr. David Spencer:
Yeah, I do try to tailor the discussion we have with patients about safety because the precautions that need to take may be very different for different people. I mean, we do have people with in completely controlled seizures who have an entirely predictable, completely strict pattern of only nighttime seizures out of sleep, and they've never had a daytime seizure, and sometimes, they can drive safely in that situation. So there's an example of something that's very tailored. But in general, if someone has in completely controlled seizures, there are a few things that are really important.
I think the driving discussion really looms large. We spent a lot of time talking about this, and that's governed in part by different state laws in terms of the driving regulations. But these seizures have to be controlled for some period of time where medically it's safe, and legally, you're permitted to drive, someone who has the potential of breakthrough seizures or in completely controlled seizures. We also caution people about working at heights, not working with dangerous equipment. Just if you can sort of imagine, "If I had a seizure in this situation, what would the consequences be?"
Water safety is a big one, so not going swimming alone and even something that might seem relatively benign, but taking a bath in a full bathtub with no one around can be extremely dangerous if a seizure happens and could be a drowning risk. So usually, advise people take showers generally very safe if someone takes a bath, having someone in the room with them at arm's reach, those would be some of the most common ones. Another thing I think people often don't think about, but working in the kitchen, there can be some safety risks there too.
So we'll often advise just to be extra safe, we usually tell people to use the back burners of the stove, something people don't often think about. But we've had a few people who've had a seizure and just put their hands down in front of them and knocked over a pot of boiling water or put their hands on the burner of the stove and gotten pretty badly injured. So it's a small thing, but just kind of thinking about it, anticipating that can be a big benefit.

Dr. Daniel Correa:
And for everyone's awareness, what are some things that everyone should know and understand about seizure first aid?

Dr. David Spencer:
Yes, there's some really good resources through the Epilepsy Foundation, and there's more and more outreach to schools and first responder training to get teachers and people that might be commonly in situations where they might encounter seizures to be trained. It's something everyone can do. So I would encourage everyone to look at the Epilepsy Foundation website. There's a great video, five or 10 minutes, and you can learn how to be a seizure first responder. I would say just a few of the key things would be if you're around someone who has seizures, and so this is something maybe you've encountered before, checking the time, just so you have an idea of how long a seizure might be happening.
If it's the first time you've come across someone having a seizure, it may not be the first thing on your mind. So the first thing on your mind should be safety. So ideally, staying with the person who's having a seizure and keeping them safe. So most seizures are going to be self-limited, and you want to just make sure that there's no injury that occurs during it. So if the person has fallen to the ground, trying to make sure they're not injured in the fall, trying to protect their head if possible. If there's something you can use as a cushion or a pillow to put under their head, that's great. And then ideally, if they're having a convulsive seizure or a generalized tonic-clonic seizure, trying to turn them gently on their side just so they're not flat on their back, and there's less risk of breathing in saliva or coughing or choking on secretions.
Really important to not put anything in the person's mouth. I think there's sort of an old mythology that someone might swallow their tongue. It's really not possible. It's attached, and it's not going to get swallowed, and you can really cause more harm to yourself or to the person having the seizure by trying to force something in their mouth. So trying to turn them on their side to keep the airway open, stay with them. Most seizures end within a couple of minutes. If it does last for five minutes or more, or if the person's having trouble breathing, or if there's been some injury or they're in an unsafe situation, trying to get help from 911 as soon as possible. Those would be just some of the basics.

Dr. Daniel Correa:
Yeah, I encourage all of our listeners to check out the videos from the Epilepsy Foundation, and there are opportunities for even courses both as webinar online, or in-person to learn more about seizure first aid. You've given us such an amazing perspective with your time and experience caring for and supporting families and people living with epilepsy. We truly appreciate your time and really everything that you've been able to give both of our listeners and to the community you help support.

Dr. David Spencer:
Thanks for the opportunity. It's great to be able to try to give back a little this way.

Dr. Daniel Correa:
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We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online @NeuroDrCorrea.

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

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

Dr. Katy Peters:
We hope, together, we can take steps to better brain health, and each thrive with our own abilities every day.

Dr. Daniel Correa:
Before you start the next episode, we would appreciate if you could give us five stars and leave a review. This helps others find The Brain & Life podcast. See you next week.

Tiffany Kairos on Finding Her Voice in Epilepsy Advocacy

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