Why My Brain is an A**hole — Part 2: Living With Seizures

She recorded this episode the morning after having a seizure. That alone tells you everything you need to know about Kristen Toepfer.

In Part 2 of Why My Brain is an A**hole, Kristen goes deep on seizures — what they actually are, what they feel like from the inside, and what it means to build an entire life around managing something that can show up without warning and take you out for minutes, hours, or days at a time.

Kristen lives with Todd’s Paralysis seizures — focal seizures that leave half her body completely paralyzed after they hit. Sometimes for ten minutes. Sometimes for half an hour. Once for almost three days. She explains how these seizures started after a brain infection following her second brain surgery forced doctors to open her skull, wash her brain, and start over — wiping out virtually all the progress she had made in rehab and forcing her to relearn how to walk and talk from scratch. Again. She has had eight brain surgeries in total. Most of them months apart.

Kristen also connects the dots between her repeated seizures, the scar tissue on her brain, and her schizoaffective disorder diagnosis — explaining how seizure activity can actually trigger schizophrenia in some patients, something most people have never been told.

This episode covers what daily life with seizures actually looks like — why she can’t drive, why she uses a Life Alert device, why she avoids the stove and oven, and why the fear of having a seizure in public has made her increasingly isolated. She talks honestly about not wanting to be a burden to the people around her, the stress that triggers her seizures, and her very real goal of getting back outside, getting back social, and eventually getting back on a bike.

She also shares something that stopped the conversation cold — her dog could sense when a seizure was coming by detecting changes in her heart rate. He passed away two months before this episode was recorded. She is getting another one.

Practical, personal, and completely unfiltered. If you or someone you love lives with seizures, this episode was made for you.

Subscribe, share, and follow Kristen’s journey at https:kristentoepfer.com

Join Kristen and cohost Billy Montana for monthly episodes filled with advocacy, education, and inspiring conversations.

Together, let's raise awareness for stroke and aphasia and support each other on the journey to recovery.
http://kristentoepfer.com

Transcript

SPEAKER_01 0:59

Hello, everyone, and welcome to today's podcast, the Kristin Toper Podcast. Why my brain is an asshole, part two. Today's focus is going to be on seizures. Hello, Kristen. How are you doing today?

SPEAKER_02 1:17

Hello. Good. How are you?

SPEAKER_01 1:19

I'm good. So guess what? I heard from a little birdie that you're going to be writing a book.

SPEAKER_02 1:33

Yes.

SPEAKER_01 1:35

That's exciting.

SPEAKER_02 1:37

It is exciting.

SPEAKER_01 1:39

I think what the uh listeners need to know is that just because you're slow in speech, because of the things that you've had, the stroke, the aphasia, and all the recovery that you have. But Kristen's thoughts are there. She has all the thoughts. So it's just slow coming out. But we're talking about somebody that was an engineer uh for UPS and is extremely smart. And this caused her to just the speech to slow down. But her thoughts are still there, and she's getting better and better. And I'm so proud and so excited that she's going to be writing her first book, which will which is started, right? You've already started the book. Okay, awesome. All right, Kristen. So today, um, my first question for you is what is an adverse effect from your seizures?

SPEAKER_03 2:56

For me is I started um schizophrenia is also caused by repeated seizures. And since I had the brain, um scar tissue and plus seizures, that's why I ended up with the schizo effective. So people need to know that it could also cause schizophrenia.

SPEAKER_01 3:34

Yeah, we've talked about that on part one of this episode. Yeah. And uh, we talked about the white matter and the scar tissue and everything else. Um, so these seizures that you have, they cause schizophrenia, correct?

SPEAKER_03 3:54

Yes, I have I have Todd Paralis seizures, and the first one I had was caused by a brain infection, and I had to get uh brain surgery, and they had to wash out my brain, and that was when um they were putting on a yeah, I had a crediotomy, and they had to put a plate in my head, and that's when I had to I had a brain infection. So since then I've been having Todd paralysis seizures which only affect half my body.

SPEAKER_01 4:49

Um so tod paralysis, right?

SPEAKER_03 4:53

So when I have um the focal seizures, and then when I when I have a seizure, um pretty much paralyzed on this side. So it'll be sometimes it'll be ten minutes, sometimes it'll be a half hour. Um one time when I was in the hospital, it was uh almost two days. I think it was another one time, it was three days when I couldn't move. It was um sometimes they think I almost thought I was having a stroke again, but it was the seizure, and some lot of people think that it might be a stroke, but it's actually uh a Todd Toralis seizure because you just you can't feel I can't feel like this side, but you know, this is what happens to me. Some people just have just the arm or delay, but and then sometimes you have normal not normal seizures, but when you have you get I already have a seizure, so when you slur your speech afterwards, or you just have to get back together and you get confused afterwards, and that's this is just me though. Um it stinks.

SPEAKER_01 6:37

I bet so is it different for everyone? This procedure and it affects everybody differently.

SPEAKER_03 6:47

Yes, but this is what happens to me.

SPEAKER_01 6:53

And so sometimes it could last for 10 minutes and sometimes it's last for a couple days.

SPEAKER_03 6:59

Yes, for me it would well, since I'm already numb, but sometimes it it affects the movement for me too.

SPEAKER_01 7:11

Okay. Um now you've had eight brain surgeries, right?

SPEAKER_03 7:18

Yes.

SPEAKER_01 7:20

So the brain surgery that you're just was describing, was that your first one, or was that one that that happened later on down the line?

SPEAKER_03 7:29

That was the second one, because as soon as I got home from the first time I was in rehab, I had the the first brain that birth, that second brain surgery, get home, and then everything I worked for was like right clean. I had to relearn how to walk again, I had to relearn how to speak again, I had to relearn everything. That that seizure wiped everything.

SPEAKER_01 8:07

So with these brain surgeries that you've had, what uh how far apart were they? Were they like years apart, months apart, weeks apart?

SPEAKER_03 8:18

Months apart.

SPEAKER_01 8:21

So that had to be taking a toll on you, I bet, right?

SPEAKER_03 8:27

Yeah, um, if I have a bad seizure, um sometimes I have to get some super duper physical therapy and not get back up to my baseline.

SPEAKER_01 8:45

Okay. Can you share a personal experience uh with seizures and how they've impacted your life?

SPEAKER_03 8:53

I can't drive, so um when I go for a walk, uh I had my dog to help me. Um I keep uh life alert on me everywhere I go. Um it's good to have um jewelry on that says you have seizures just in just in case that happens. Since mine are tied and focal seizures, I'm awake through the whole time, so I can voice that I'm having a seizure. Um so that's the good part, but it's also bad that I'm also awake during them. So like when I'm shaking and it's just not fun, obviously. That what's but at least I know what's happening.

SPEAKER_01 10:00

Well, that's good that they have things for you out there, tools, uh stuff that you wear, life like like life lock, as well as you know, jewelry so people can know if you just happen to fall and whatever may happen. But I have a question for you when it comes to your dog walking, you like you must have. I don't know what kind of dog do you have? Do you have enough you have obviously you have enough strength to walk the dog, right? Or is the dog trained to help you specifically?

SPEAKER_03 10:34

There are dogs that can detect seizures. Um my dog could tell from like my my heart weight, my heart rate, that I was gonna have, or dogs just can sense it sometimes that when you're about to have one, um it just wow, so that's amazing.

SPEAKER_01 11:07

So your dog could actually tell what your heart rate is?

SPEAKER_03 11:12

Yeah, he knows like when I'm gonna have a panic attack as well.

SPEAKER_01 11:17

So let me ask you, do you uh is this dog something that you had post-stroke or prior?

SPEAKER_03 11:25

Post-stroke, he actually um passed away two months ago, but we're gonna get I'm getting another dog that will do the same thing.

SPEAKER_01 11:37

Oh, I'm sorry. That's amazing. So the dogs are trained actually to help you then.

SPEAKER_02 11:42

Yes.

SPEAKER_01 11:43

So that's a tool. Wow. See, you learn something every day because I I had no idea. So that's pretty awesome. I'm sure a lot of listeners out there would like to know that information as well. Um, what are some of the common misconceptions about seizures that you've encountered and how do you address them?

SPEAKER_03 12:06

Well, when like for me, if I'm having a focal seizure and I'm just sitting there and I'm just staring at the space, that pretty much means that I'm gonna have a seizure, and I just need to make sure I'm sitting down or I'm having one right staring at you, or it's they're kind of tricky. Um I have them a lot at night, so I really don't know when I'm gonna have one or until I start shaking and then I I get up or go to the to the bathroom or I try to get there because half of my body isn't working. Um yeah. I mean, people live like this, you know, there's millions of people that suffer with with this too.

SPEAKER_01 13:14

But we ought to keep keep going, and you do that really well, so you're very resilient, and that's really a great thing. Um, but how did you first learn about your diagnosis and what was your initial reaction?

SPEAKER_03 13:37

Um it was hard because I thought it was just over in the hospital. I was like, well, you know, if that it's over, right? Like I'm not gonna have another one. But then they keep they keep calming. So with medication, you should be okay. And then I'm supposed to like I know my triggers are from stress, and if I don't eat good, if I don't sleep good, um medication, you have to make sure you take your medication and on time and the right dosage. Um sometimes I'll not take it on time, or um, I don't take it the right um the right medicine. And sometimes if I don't do that, then uh I end up having a seizure. So make sure you guys make sure you do that.

SPEAKER_01 14:44

Um I remember seeing something on your Facebook. I don't remember when it could have been six months ago, I'm not exactly sure. But you had a post up about being, was it a year seizure free?

SPEAKER_03 14:58

I actually had one last night, so that's why I'm a little off today.

SPEAKER_01 15:08

So really, so last night at the time of this podcast, you were doing this podcast when you just had a seizure.

SPEAKER_03 15:19

Yes, I had one um early early this morning.

SPEAKER_01 15:24

Early this morning, and you're doing a podcast. Like this is just a testimony how amazing you are, like not even a seizure could stop you.

SPEAKER_03 15:35

It was like, well, we were gonna do seizures today. Well, I'm gonna keep doing it because that's what we were gonna talk about.

SPEAKER_01 15:45

Wow. So before this one, when was the last one?

SPEAKER_03 15:49

Um, I'm not sure. Probably last month, actually, I think heat does it too. So it's this this time of year that um makes sure he's stay hydrated.

SPEAKER_01 16:05

The heat causes this as well.

SPEAKER_03 16:08

Well, it doesn't help. And it helped um the heat doesn't help with my feature either. So heat's not good.

SPEAKER_01 16:26

Yeah, I mean, I live in Florida and it is it's very humid here this time of year, so uh I get it. I feel it, you know, physically I feel it, so I can only imagine how it affects you. Um so do you know how many seizures you've had since you've had the stroke? Has it been like in the hundreds? Like how many do you think you've had?

SPEAKER_02 16:55

Um I'm not sure, but definitely not in the hundreds. Um I'm not sure.

SPEAKER_01 17:09

Okay. When it comes to the seizures, what was the longest stretch that you didn't have any? Was it a year? Was it two years? Was it a month?

SPEAKER_03 17:18

That was um, because I I thought that I was gonna be able to get my license back at a I had a good stretch, and then it did happen. So that's not gonna happen.

SPEAKER_01 17:36

How long do you have to go without seizures before you can get a license again?

SPEAKER_03 17:41

Um, I think it was oh, I'm not sure. I think everybody's different. What kind of seizures or um how long? I think it's up to your doctor.

SPEAKER_01 18:01

Okay. Um that works. Medications. What do you take to help not have a seizure? Do you have do you take daily medications?

SPEAKER_03 18:13

I have three medications now. I don't know how to pronounce them. Okay.

SPEAKER_01 18:19

And is it daily these three medications? Are they daily ones?

SPEAKER_03 18:23

Yeah, twice a day.

SPEAKER_01 18:25

Twice a day? Okay. Um, so what are some important steps you've taken in managing your seizures and the effects on your daily life?

SPEAKER_03 18:36

Well, I make sure that I take my medicine. I try to cut back on caffeine, and I try to eat healthy, do some, I definitely walk as much as I can to try to, you know, keep moving and avoid stress. Who knows how to do that? Otherwise, let me know.

SPEAKER_01 19:14

So walking is extremely important. I think everybody kind of knows that walking has a lot of benefits, but I'm also kind of curious because you say stress. What what do we have that's causing you stress right now? Like what are some of the stresses that you have and how do you deal with that stress?

SPEAKER_03 19:43

Well, I try to um I like to walk in the nate in nature. I like to color a lot. I like to I started like to do knitting. I like to um just like little things like that. Um I like to watch TV sometimes. Um the book, I like to look at that. Just like little things like that that try to keep me occupied.

SPEAKER_01 20:27

So what kind of stress do you have? Is it trying to figure out what shirt you're gonna wear the next podcast? Or do you have other stresses that you what what kind of stress do you have?

SPEAKER_03 20:40

Um, I just have I don't know. Lots of things, life.

SPEAKER_01 20:53

Life. Um as an advocate, what resources or support networks have you found most helpful for people living with seizures?

SPEAKER_03 21:04

There's a lot of Facebook groups because there's groups for everything. Um, there's websites online for seizures. You can always ask for the hospital for groups. Um, your doctors can show you or give you information about groups or websites that help you out. Um there's things like that for local stuff. There's also not just nation or whatever, there's also local things out there.

SPEAKER_01 21:58

So what kind of Stress do you normally have that contributes to this? What's your stress that you some give me some examples of stress that you have?

SPEAKER_03 22:09

Well, sometimes um if I have doctor appointments, um, I have to get an Uber because I can't drive. Um if I want to cook anything, I can't use the oven or the stove because I still can't feel this side of my arm. So I used an air fryer. Um being kind of like a a burden when I go out. I'm I'm afraid that I'm gonna do have a seizure out there. Um depending on who on what is and just the anxiety of that of going out and stressful.

SPEAKER_01 23:05

Yeah, that's so understandable.

SPEAKER_03 23:07

Um I'm sure other people are like that too.

SPEAKER_01 23:11

Yeah. Well, before we got on air today when we were just talking, talking about your book, uh, one of the things that we were talking about was how do you navigate relationships and social situations while living with seizures?

SPEAKER_03 23:27

That's what I'm trying to work on with going out again and trying not to be so isolating myself. But that's that's what I'm trying to work on is going out and being social.

SPEAKER_01 23:51

Yeah, so I think also like just to interject it for a second, um you could like let the viewers know and listeners that when you're out there and you're actually you're afraid to have a seizure in front of somebody and the effect that it's gonna cause them, and you're actually thinking about other people and you're not thinking about yourself, so it's a very unselfish thing, but that's something that also adds stress to you is the fact that you know you're afraid that you might have a seizure if you go out, and what that's gonna cause. So that's that's a fear you're stroke, or stroke, yeah. So kind of explain to the listeners about like that fear that you have about trying to go out to a party or a social event.

SPEAKER_03 24:54

Well that's it. Like I'm I'm afraid to go out and have something medical happen, and then I have to rely on someone or people to help me. I mean, I have to to carry a around the life alert, and I don't want to have to rely. Um I don't want to be a burden, I guess, to say of the person, the people that are with me, and uh I gotta get over it, and that's what I'm trying to do.

SPEAKER_01 25:35

And not do you have a plan to try to overcome those things? Like, you know, do you have a certain somebody or something that's is there to help you out? Like if you go out, whether it's your husband or whether it's a friend that you have somebody that will, you know, be there with you that knows how to handle certain things, um, so you could feel more comfortable going out.

SPEAKER_03 26:01

Yeah, I have my husband and my family. And um, yeah, I'm gonna I'm I'm working on it now.

SPEAKER_01 26:08

Well, good, you should because you have a great personality and you always make people smile around you. So I think you should. Um and one of the things that I think that you're really good at is overcoming your fears. So I'm sure you'll overcome this too. Uh, but what advice do you have for others who may be newly diagnosed with seizures?

SPEAKER_03 26:33

And don't be afraid of it, and don't let you be a hermit like me. Um, do your research on it. Um, take your medication. Definitely take your medication. Find out what triggers you too. Like if you're like caffeine, which triggers you or you don't eat or you and you don't sleep, you know, that might trigger you in two years' feature. So you need to make sure, like you know your body, so you you have to make sure.

SPEAKER_01 27:17

Yeah. So, Kristen, how do you stay positive and motivated despite the challenges you face as a stroke and a phasure survivor and somebody that has gotten many seizures? Like, how do you stay positive and motivated?

SPEAKER_03 27:36

I stay positive because I I know I'm gonna be okay. I just have to work on it, and I have I have my toolbox, so I need to keep doing the things I'm supposed to do, and that's how it keeps me positive that I want to be better and I want to get healthier, and I want to make sure that that's what I'm doing. My goals, and my goal is to get outside and get more sociable and to help people.

SPEAKER_01 28:19

I think the last time we spoke, you were also talking about that you have a goal of riding a bike again.

SPEAKER_03 28:26

I'm getting there, I have my bike, I got a bike.

SPEAKER_01 28:31

So you have you riding the bike or is it a stationary bike, or what how have you been getting that taken care of?

SPEAKER_03 28:38

I haven't I have a bike. It's a little scary, but I still I still have to balance it just to have training with the bike I should get them.

SPEAKER_01 28:57

Well, you know, Kristen past you sometimes. Um final question. What are some common triggers for seizures and how do you manage or avoid them in your daily life?

SPEAKER_03 29:20

For me, it's definitely a need I need sleep. Um not taking your medicine. Um, not eating, not um bright lights sometimes.

SPEAKER_02 29:39

Um stress.

SPEAKER_03 29:44

Um those are my triggers.

SPEAKER_01 29:49

Um how do you manage them?

SPEAKER_03 29:52

I work out too much or I get overheated that pretty much for the overheating and when it's really hot out that really gets me.

SPEAKER_01 30:10

How do you avoid them in your daily life?

SPEAKER_03 30:13

Well, I when if I get hot and the air conditioning on it, I stay indoors away from the sun. So that's if I go walking, I wanna go in the morning or at night. So that's good. And I try to eat healthy. Um that's probably sleeping and eating healthy is pretty good. Um taking medication on time and the right doses and making sure you followed up with your doctor if you have any new symptoms over having any effects over anything you need to call your doctor with. Call your doctor if you need some kind of support.

SPEAKER_01 31:10

That's great advice. So, Kristen, give me a day in the life of Kristen Taufer. Like, take me through a normal day with you.

SPEAKER_03 31:19

I wake up and do my routine, get and then I I'll go to my group therapy, and then I'll come home and I'll make dinner and then I'll re-relax a little bit and then uh hopefully go for a walk or something, and then it'll be time for bed.

SPEAKER_02 31:51

Okay.

SPEAKER_01 31:54

So, any plans on you're gonna be walking New York Fashion Week this year?

SPEAKER_03 31:59

I'm I'm hoping. I am really excited to.

SPEAKER_01 32:08

Yeah, last year. Yeah, well, you did a great job last year. Maybe I should put up some pictures of some of the shots we took last year from New York Fashion Week and let people see that you're out there uh working really hard and you know, you're doing everything you can to overcome all this. Um, I think it's important for people to know that you know you're a hard worker. One of the reasons why you're getting through this is because you're stubborn, right? And you're determined to get over all this stuff, right? You refuse to lose, which is a great attitude to have. And also I want to remind everybody that's listening to this podcast that if you want to look at some resources or if you want to go to uh find out more about Kristen, uh go to Kristen Toper.com. That's K-I-K-R-I-S-T-E-N T-O-E-P-F-E-R dot com. Kristentofer.com. This is the Kristen Topher Podcast, stroke and a phasia advocate. And we are here to inform you and let people know uh what Kristen's been through and that it could help people get through these things and warning signs and everything else. So uh I love that Kristen's doing this to try to help others out there, and it's really important. So check out our website and don't forget to subscribe, that's really important, as well as subscribing to all the podcasts. We're on all the major podcasts, and we'll see you next time.

SPEAKER_02 33:56

Bye.