ICU – “I SEE YOU” PODCAST
Motherhood With Dizziness and Imbalance from Vestibular Disorders
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Caring for oneself with a vestibular disorder is not easy—add infants, children and teens into the mix and the spectrum of experience can span from feeling downright impossible to uniquely rewarding. In honor of Mother’s Day this month and our community of mothers with vestibular disorders, this episode of the ICU – “I See You” podcast dives into the multi-layered experiences of mothering “dizzy.” We are joined by vestibular patients and mothers, Kayla McCain and Marissa Aldrete to discuss considerations in family planning, pregnancy and vestibular disorders, managing self-care, and how to include family in your vestibular experiences so you feel more supported and less overwhelmed and alone.
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
ABOUT THE GUESTS
Marissa Aldrete is the mother to a fifteen year old son and has been a vestibular patient for over 12 of those years. She lives with vestibular migraine, chronic migraine, and PPPD. When she first developed symptoms, she was a preschool teacher with a three year old at home. Like so many vestibular patients she saw multiple physicians who either thought she had anxiety or wanted to try hefty meds that would leave her unable to function. In 2014, she experienced a remission of symptoms and went back to a “normal” life for the next four years. But in 2018 her symptoms returned with a vengeance and she became housebound. Eventually, under the care of Dr. Shin Beh, she was able to slowly resume life again. Marissa joined VeDA as an ambassador and started an online support group with fellow vestie, Joy Holten. Joy and Marissa also have a podcast, Finding Joy in Your Vestibular Journey. Recently Marissa became a health and wellness coach so she can share what she’s learned with others.
Kayla McCain began experiencing symptoms of vestibular neuritis and vestibular migraine in October of 2016. Like many vestibular patients, Kayla fell into despair during the early stages of her diagnosis. However, after getting established with a neurologist (Dr. Shin Beh) and treatment plan, she was able to adapt to her new normal, became an ambassador with VeDA and began sharing her experience online at Truekaylaisms.com. Kayla left the corporate world shortly after her diagnosis and opened her own business (Kayla McCain Marketing) to be able to continue to pursue her love for content marketing while controlling her work environment with daily dizziness. In 2020, Kayla became a mom – something she wasn’t sure was a possibility with a vestibular disorder. Today, she continues to work from home with her two young boys Declan (4) and Greyson (1) while managing the ups and downs of her vestibular migraine.
Hosts:
Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/
Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media
TRANSCRIPT
VeDA uses otter.ai to create machine-generated transcripts. This transcript may contain errors.
Cynthia Ryan – VeDA
Welcome to the ICU Podcast where we explore the vestibular experience through conversations between patients and the health professionals who care for them.
Kimberly Warner – Unfixed Media
During this podcast, we invite patients to share their stories and healthcare professionals to ask questions, so they are equipped to better care for and truly see the invisible challenges faced by their patients. I’m Kimberly Warner. And
Cynthia Ryan – VeDA
I’m Cynthia Ryan, and we are your hosts on this journey of discovery.
Kimberly Warner – Unfixed Media
Welcome, everyone to the ICU Podcast. I’m really looking forward to this conversation today feel like it’s just a gathering of old friends. So this month, we are going to talk about mothering and dizziness. And as we all know, caring for oneself with a vestibular disorder is not easy. Add infants, children and teenagers into the mix and the spectrum of experience can stand from feeling downright impossible to uniquely rewarding. In honor of Mother’s day this month and our community of mothers with vestibular disorders. Let’s dive into this multi layered experience of mothering dizzy. We’ll discuss considerations and family planning, pregnancy and vestibular disorders managing self care and how to include family and your vestibular experiences so you feel more supported and less overwhelmed and alone. Slip that Cynthia, do you want to introduce our first guest?
Cynthia Ryan – VeDA
I do. I am so excited to have both Marissa and Kayla on today. As you said, Kimberly Rosa and Kayla have been volunteers with Vita for a long time and an eye. It’s exciting to watch them and listen to their evolution as mothers. So I’ll start with Marissa. Marissa is a mother to a 15 year old son and has been a vestibular patient for over 12 of those years. She lives with vestibular migraine, chronic migraine and triple PD. When she first developed symptoms, she was a preschool teacher with a three year old at home. Like so many patients. She saw multiple visit physicians who either thought she was anxious or wanted to try half the meds that would leave her unable to function. And then in 2014, she experienced a remission of her symptoms and went back to what we call a quote unquote normal life for four years. But in 2018, her symptoms returned with a vengeance and she became housebound. Eventually under the care of Dr. Shin Bay, which many of you know as the king of vestibular migraine. She was able to slowly resume your life resume her life. Marissa joined Vita as an ambassador and started an online support group with fellow Vesti Joy Holton, joy and Marissa have a podcast called finding joy in your vestibular journey. And recently, Marissa became a health and wellness coach so she can share what she’s learned with others. Welcome, Marissa. Thank
Marissa Aldrete
you. Happy to be here.
Kimberly Warner – Unfixed Media
And I’m going to introduce our other guests Kayla McCain. Welcome Kayla. We’re so happy to have you here. Kayla began experiencing symptoms of Vestibular neuritis and vestibular migraine in October of 2016. Like many vestibular patients, Kayla fell into despair during the early stages of her diagnosis. However, after getting established with a neurologist, another Dr. Shin Bay patient and myself as well so Dr. Bay if you want to like throw some money for this episode, and she got on his treatment plan and was able to adapt to her new normal, became an ambassador with Vita and began sharing her experience online at true Kayla isms.com. Kayla left the corporate world shortly after her diagnosis and opened her own business Kayla McCain marketing to be able to continue to pursue her love for content marketing while controlling her work environment with daily Disney dizziness. In 2020. Kayla became a mom, something she wasn’t sure she was past was possible with a vestibular disorder. And today she continues to work from home with her two young boys Declan and Grayson while managing the ups and downs of her vestibular migraine. Wow, this is cool. I just put it together that three of us are mauled, beaten, treated by a doctor Bay which is but I’m not a mother. So I’m gonna let you guys take over on this conversation. Let’s just start Kayla. With you. You delayed starting a family because of your vestibular system. DOMs Can you describe some of the considerations you had to take and how this was for you? Especially emotionally?
Kayla McCain
Yeah, I, so I was 27 when this all started happening for me. And at that point, I think we’d been married just two years, or no, maybe two a year and a half. And so we weren’t going to start a family like right away. But we were getting to the point where we were really thinking about it. But I, for those first, like six months, couldn’t leave my house, I felt like I was, you know, I was depressed, I was stuck inside, I didn’t want to go anywhere, which is very unlike me, I’m an Uber X extrovert, where I want to be out socializing. And so being home and all that was just its own different story. But I had done so much research before I even got to see Dr. Bay about all these different medications and things that were likely to be prescribed. And a lot of them were not something that was compatible with the pregnancy. So I had seen before I saw Dr. Bailey’s 10 Different doctors who wanted to try seizure drugs and other medications. For me, but I am you’ll hear this with a lot of people online, I get these kinds of messages all the time on Instagram, I’m scared of trying new drugs, I’m very sensitive to medication, like, what is your feedback? Well, I was the exact same way, I was very nervous to try anything that I felt like would alter me. I mean, yes, you want to try things, they’re gonna help you so you feel better, but then you don’t want anything that’s also going to change me with my personality, change how I’m feeling. And with a lot of those, I know that if you’re ready to have a baby, you have to wean off of them. So I was very scared to get on these medications, and then start feeling better get used to whatever the effects were, and then have to start all over again after having a baby. So I wanted to make sure that I could get my symptoms managed the way that I wanted to get them managed, before even thinking about going down that road of getting pregnant and all of that.
Kimberly Warner – Unfixed Media
Yeah, I can imagine that was like a scary time. Because this the newness of a baby, I mean, let let alone adding a drug into that, and the dizziness and all of that there’s so many variables. So I probably no book that you could pick up that just sort of guided you through it.
Kayla McCain
Right. And I mean, I at that point, um, I wasn’t and I mean, my sister has a few different, she has a two of her own two that are adopted, and three of her own children. So I’ve seen like the different sides of all points of childhood, and I knew that it’s not just laying around watching movies with your kids, it’s exhausting, you’re sleep deprived, there’s just a lot that goes into being a mom. So I knew that when that time was going to happen for me that I needed to be prepared. And that’s my personality anyway, like, even if I didn’t have, if I didn’t have a vestibular disorder, I’d still would be making sure I prepped, but in this case, you know, you don’t know what it’s like to be a mom and throw in the wrench have a vestibular disorder, because I heard a lot from people, you either could get pregnant and your symptoms could go away, and it would be amazing, which I prayed for it would be for me. Or it could be way worse. So there was also that where you’re like, Okay, I’m finally starting to feel a little bit better. I’m getting this manage. Do I want to do that? Like, where do I need to be at one before I start that that journey in my life? Yeah.
Cynthia Ryan – VeDA
And that you just even had to think about it. You know, you already have everything on your plate with dealing with a vestibular disorder, figuring out what it is and how to manage it. And on top of that, you have this this other stress this other factor that’s limiting your life, that’s got to be really frustrating.
Kayla McCain
Right, right. And, again, I just I wanted to see if there was a way to naturally get to a point where I was comfortable before having a baby. And that took time. I mean, I This happened when I was 27. I didn’t get pregnant till I did. We found out the day I turned 30. So it wasn’t you know, it took about three years for me to really navigate. And you know, at that point, you know, we were wanting to have kids soon soonish after getting married, but we definitely delayed it because of that.
Cynthia Ryan – VeDA
So So Kayla, you had to think about whether and how to have kids because you already had a vestibular diagnosis. Marissa, you had a three year old at home when you were first diagnosed. So can you tell us a little bit about when you first began experiencing Dizzy dizziness and how that correlated with your journey as a mother?
Marissa Aldrete
Yeah. So my, you know, my symptoms started in 2011. And, you know, I was in a stressful work environment. I was working full time. I was able to have my son with me. He was in another preschool classroom, but you know, it’s just like Keela said it’s stressful, like when you have your own little one, and then you’ve been working with little ones all day. So there was just a lot of stress, you know, going on and I was getting more migraines, more headaches, pain, like actual pain. And then it was like, one day when I was driving, it was like a light switch changed where I all of a sudden didn’t have pain. I just had this, like overwhelmingly Dizzy imbalance, you know, on a boat feeling rocking, you know, just scary symptoms. So that’s how it how it started for me. And, you know, you think the worst, always first, you think like, oh, it’s got to be a brain tumor or something, you know. So that was really hard. As as, you know, having a just starting a family and all that. So
Kayla McCain
I can’t even I can’t even imagine feeling that way. I remember feeling that way myself. But it’s such a different element. When you’re a mom, I feel like anytime anything happens now. I’m like, but like, what would I do for my kids? You know, and I came to imagine, like being on your side of it. And getting first diagnosed? Yeah,
Marissa Aldrete
and having and having my first onset driving my car with my son in the bag. Oh, my gosh, that’s terrible. It’s scary. So
Kimberly Warner – Unfixed Media
would you did you tell him what was going on in that moment? Do you remember? Or were you just like, trying to make sure he didn’t worry,
Marissa Aldrete
or I think I was trying to make sure he didn’t worry. And, you know, we were just trying to get to my mom’s house. So you know, I don’t think at that age, like he really picked up on you know, luckily, too much of it. Like, I mean, he would notice things, but, um, it was just yeah, a very scary, very scary moment.
Kimberly Warner – Unfixed Media
So there’s a theme of fear here, that whether it’s be free prenatal fear, or you know, even with a little boy, that type of fear, I think really, as we’ve learned with vestibular disorders, exacerbates our symptoms, too, you know, if maybe we had had just like, chill, nothing big and we had a symptom. And then maybe we just sort of ignored it, then it might not have gone into a full blown vestibular disorder. But with all those stresses stacked, whether whatever that is in your life, I think it tends to sort of exaggerate the symptoms and maybe even prolong them. Kayla, so you entered into pregnancy, then what I kind of want to know how did your vestibular symptoms affect the pregnancy and vice versa?
Kayla McCain
Yeah, I It’s kind of funny. I say it’s funny. It’s funny like in hindsight based on like people I’ve talked to but when I got pregnant with my first son Declan, I became very sick I was diagnosed with HCG, want to make sure I don’t butchered the hypermedia this gravidarum to where I was just puking on the entire pregnancy. So I basically switched having, you know, the vestibular symptoms to being very, very sick, which also, you know, caused my body’s stress, and then in turn, you know, with my natural dizziness symptoms and vestibular symptoms that came with it. And it’s crazy, because I feel like I dealt with that. And then another thing that happened during my pregnancy was just from the extra blood flow, my tinnitus was increasingly worse just because of how much pressure was in your head. So between those two things, my symptoms definitely I feel like we’re exasperated and but the crazy thing is, is like the minute he came out, and I had to have a C section too, because I had other issues that were not vestibular related. The minute he came out, the sickness went away, like the pressure went away, and it was like, okay, like, my body can take a break because, you know, I’m not having all these other ailments going on. But my issues really started more postpartum than they did pregnancy I feel like pregnancy was because of another element that I had gotten sick with and then postpartum was just a reaction to hormones which was which has been my problem like since the get go. Now we kind of chatted on off air before about this but um, I was very sensitive with birth control. That was one of the first things that I got off of that actually helped me and I think just with any kind of changes in hormones, my body just really reacts and after having Declan I will never forget that I they always say sleep when the baby sleeps. And I tried to do that which I’m like, not the personality to sleep all day long. It just stresses me out as it is, but I remember I was taking a nap and I woke up up with just this, like the elevator sensation like I was melting into the couch. And I think I’d been probably five days postpartum after having Declan and I just was filled with that same anxiety, just scared fear everything that I felt when I first got sick with my vestibular migraine. And come to find out that’s part of like baby blues and when your body’s adjusting from hormones, but I would say that that was probably one of the like, the scary moments and then being like, oh my gosh, is this what this is going to be like? Is this what my life is like now that I have a baby? Do I have to start all the way back at the beginning? Yeah, pretty scary.
Kimberly Warner – Unfixed Media
I can feel that even as you talk about it. It’s like, Oh, you just put those those experiences so so helpless feeling. Yeah.
Kayla McCain
Yeah, it’s not it. I mean, even even me talking about I it was very traumatic. I can like picture myself right in that moment all over again.
Cynthia Ryan – VeDA
Talking about fear, you know, Kimberly had been mentioning that fear seems to be a scene here a factor and I remember that, during our life, rebalanced Chronicles, Docu series, Sandy had been a who also I think, as the singular migraine had been talking about being afraid to hold her baby, because she wasn’t sure when, when an episode would come on. And, and that’s got to be such a, you know, push and pull of emotions.
Kayla McCain
Yeah, it definitely is. And I remember, I was just talking to my husband about this the other day. Because during that period of time before, because this was during the pandemic, I had Declan when the world shut down, I had him in March 2020. Like, it was a really weird time, because he really, you could get support from doctors, but it was all from virtual, like you didn’t get, you know, the kind of treatment that a lot of, you know, new moms were used to it was all just a whole, you know, he had the other fear to have, you know, the pandemic and everything that was going on. I remember, my bassinet had wheels on it. So if I was scared to hold him, I would put Declan in his bassinet and kind of push it around to where it needed to go. Because I at least felt if an episode was going to come or while I was still trying to manage coming back down to my normal, it was something that I could control. And I felt that he was safe if I was alone, or you know, if my husband was upstairs or what have you.
Marissa Aldrete
Yeah, I still can relate to that, Kayla, because that was so much of what I felt. Having this you know, my kind of first time go around with it, when Ethan was young, being very afraid to be alone with him. That’s something you know is going to happen to me, like I would get dizzy and fall down or something. So I had taught him early on, like, you know how to call, how to call dad. And then, you know, even I remember teaching, I’m like, 911, like, if Mommy’s not feeling good, you know, this is what we do, and just trying to be prepared and even going out somewhere like I would feel much more comfortable if someone was with me. That was a thing I never really ventured out. Like couldn’t drive at the time, but I didn’t venture out on my own like just with him. So the day that I finally could take him on my own like was just an amazing feeling. Because for so long, I couldn’t because what Kayla was saying, like you just don’t you want them to be safe. And you don’t know what’s going to happen to you. Like if the symptoms calm or whatever, you have an attack. So yeah, I totally relate to that. Yeah, right.
Kayla McCain
I can’t think so. Sorry. Go ahead. Cynthia.
Cynthia Ryan – VeDA
Mercer, I was gonna ask you at what point did Ethan become aware that you were having these symptoms? And that it was, it was an issue that you weren’t? It wasn’t? Yeah,
Marissa Aldrete
I would say probably, like, maybe kindergarten or a little before even. Yeah, he’s just all he knew. Because, you know, I’d say, you know, mommy can’t drive, you know, right now, because I, you know, I get dizzy. And how I explained it to him was, you know, if you, if you run in a circle or you know, you’re on a merry go round, and when you get off, you know, how you feel that’s, that’s, you know, what mommy’s feeling right now. So, you know, I tried to explain it so he would understand, but didn’t never seem to, you know, I think kids are so resilient and compassionate. And, you know, he never really seemed to notice, you know, that, like, our friends would drive us places. And, you know, I had the support of my family, you know, like, my family would help drive me to work or my husband would drop us off. So, I mean, I had support but um, yeah, It’s strange. So yeah, definitely my first go around with it. He didn’t notice as much. I think I’m
Kimberly Warner – Unfixed Media
just feeling so much admiration for you guys, honestly, I mean, this is, I know what it’s like firsthand to feel so frightened in your own skin, and then to have another being and the newness of all of that and to try to navigate it and communicate. And it’s like, Whoa, this is you guys. I want to give you a gold stars.
Marissa Aldrete
Because you went through pregnancy with it. So yeah.
Kayla McCain
I mean, like I said, though, I feel like, you know, I recently had another health issue. And I thought to myself, like how much anxiety it created for me, and it wasn’t nearly as similar to like a vestibular disorder. And I kept thinking, I don’t know what I would do if this had happened. Having children already. So I mean, it’s definitely I think both sides just really have, you know, I mean, I’ll never be able to experience that. And you know, and vice versa. But it’s, I can’t even imagine how that was for you. Especially having to explain to your child what’s happening. And you know, like, I can’t even imagine my son seeing how I was for those first six months when I got sick. I don’t know how I would explain that.
Kimberly Warner – Unfixed Media
When you Kayleigh when you had your toddler, when you were still, I mean, dizzy and navigating all of this. And I’m imagining, like, we hear this term, the spoons, did you feel like there were times where you just didn’t have enough to give? And what was that like for you?
Kayla McCain
Yeah, and I, of course, I mean, being a mother, whether you have a disorder of vestibular disorder, or not, I mean, it’s, it drains you, that’s exhausting. I mean, your your children or your life, and they take take a lot from you, but it’s also so rewarding. And when you’re also dealing with an illness like this, yeah, I mean, there’s some days where, you know, I, if I was feeling just awful from having an attack, or if I still to this day, you know, there’s also the mom guilt that comes with it, because I might have to lay around a little bit more than that might require them even watching more TV than I would like, or having screen time. And it’s, you know, it’s the guilt of, I’d rather be engaging in doing activities with my children than throwing on the TV, you know, but the same time, it’s also like, kind of the balance of taking care of myself too. And I had to get over that. Especially when I had my second you know, cuz there’s days where you just, you just don’t have it, like you said, spoons, I don’t I didn’t have the energy. When Declan was a baby, I remember I would joke too, because like, you know, they do like tummy time, and they’re playing on their, their mats and stuff. And like this always kind of worked out because I could just lay next to him and let him do his thing. But when they’re babies, they nap a lot. But I actually, with my littlest, my son Grayson, after I had him, I was able to really finally get on medication. And that’s when I started feeling just so much better, a lot more like myself, I was able to manage postpartum, much better. But there are still days because this isn’t, you know, it’s not magically gone, where I will just randomly get hit with an attack. And I remember I was putting him down for nap. My other son was already napping. And I was rocking him. And I’m in the dark, which usually feels great for me because I can’t stand the light. And I was rocking him. And I remember going, Oh, no, I could feel my eyes starting to do kind of the aura, the floating like the colors. And again, I’m like, I’m in the dark, like this is usually not where this happens. And so I immediately was like, I need to put him in his crib. I am nervous holding him, I need to get him in his crib. So I put him down. And as I walked out, I started because I’m sure everyone’s familiar with the Alice in Wonderland symptoms. That’s something that happens when I get really bad attacks. I could feel my hands starting to stretch out and I just the hallway got really long and I feel like I essentially was crawling to my room. And luckily my mom was off that day and I was able to call her and I was like I need you to come over because I physically feel like I I cannot take care of my kids right now. My husband was working he wasn’t able to come home and my mom was able to rush over which that’s not every day my mom still works today. It just happened to be on a day that she had off but I remember I just laid in bed and she took care of my kids rest of the afternoon I had to take my rescue met because an attack out of the blue like I was having a great great day not nothing like to precursory I wasn’t stressed or anything and going back to what kind of talked about just feeling scared and not being able to take care of my kids in that moment. I was lucky I have you know my mom available to help out but yeah, there there are times when you can get to the where you’re so depleted and then you know the next thing you know you’re having a full fledge attack. Yeah,
Cynthia Ryan – VeDA
yeah. Oh, okay, well how old are your children now?
Kayla McCain
Declan birthdays in two weeks, it’ll be four and gray will be two in July. Awesome. Why are still so young. I know, they know. It’s such a fun stage too. And they’re starting to become such buddies and kind of going back to actually what Marissa had said, Declan. I don’t know how much he understands. But he definitely understands that Mama gets dizzy. And it’s funny, he knows that happens after I work out, because I’m always dizzy if I run or by cycle, and if I come in from the garage, or from outside, you go, Mommy, you need to sit down. I know, you’re like, it’s sweet. Cuz I’m like, I’m like, I don’t know what level he understands that but it’s sweet. Because he knows, will say, you know, they start buzzing around me and you know, it can be very overwhelming. So he knows to kind of just just hang out with me as I because I’ll sit down for like, you know, 15 minutes really get my bearings. But it’s it cracks us up now because Declan will just use that in context to go. Sorry, I can’t take a bath. I’m dizzy right now. Are you smart? Mom too much?
Cynthia Ryan – VeDA
Well, you know, it’s kind of like, this is the mom he grew up with. And so it’s it’s not unusual. It’s not weird, or maybe even scary for him to see you. Having symptoms like that. I can tell you, you know, for myself, my mother has vestibular migraine and veneers. So I grew up with that as well. And and, you know, mom, having a dizzy attack was just a thing. You know, we all knew that it happened and and what to do. ERISA I’m, I’m curious. So, um, how old is Ethan now?
Marissa Aldrete
He’s 15. So Wow.
Cynthia Ryan – VeDA
So I remember, I’ll just tell you that as an interest it was I was 15 When my mom had one of the biggest vertigo episodes that I remember her having. And, and it was the middle of the night. My father was out of town. And my sister and I called 911. And in came like, I don’t know, it seemed like a half a dozen paramedics. I mean, it was like, it was this whole thing. But you know, to us, you know, it was it. I could not put myself in my mom’s shoes at that time. You know, now I can. But at that time, it was it was this thing that was happening outside of me to my mom. So Marissa, how do you communicate with Ethan now about what you’re going through? And do you? Do you think he gets you know, the how scary it is for you to have a vestibular episode?
Marissa Aldrete
Yes. So yeah, looking back, and 2018 where things came back, and were so much worse than the first time. He was in, we figured out yeah, he was 10s. He was about in third grade. And he, I mean, at this time, he definitely knew you know, what was going on with me. And I think he would be worried, like, I tried to hide it from him. But he knew I was on the couch a lot. And he knew, you know, if he got off the bus, and he saw my mom at the bus stop, he knew, Okay, you know, mom’s inside, probably not feeling good. You know, and thankfully, like Kayla said, you know, like, I had my mom to help, you know, when she could, um, but yeah, he he definitely understood. He actually when I did the Chronicles, and he saw, you know, the video, he was just, you know, because he knows he sees it, and he’d always try to tell me, you know, mommy or okay, you know, he would sit with me. He used to always, like, especially when he was in third grade, or fourth grade, whenever he like, want to show me a movie on his iPad. And of course, I couldn’t watch it. So I’d say, you know, I can listen to it. Like, you can play it and, and I’ll just listen and we’d sit together. But yeah, it was it was so hard. I missed a lot of you know, soccer is a big part of Ethan’s life. And I missed a lot of that, you know, even just being present to be able to go to parent teacher conferences, you know, like events at school that I would want to participate in, you know, I wasn’t able to. So, I mean, now and he sees me, and what what I’ve been doing the last two years, you know, he’s just, he’s, he’ll tell me he’s like, I’m so happy for you, mom. And you know, you can just tell like, he’s, he’s just he knows that mom’s happy now home and doing better. Yeah. Yeah. But when he was older, it was definitely harder. Just because he knew, you know? Yeah,
Kimberly Warner – Unfixed Media
families definitely recognize the changes happening in us and focused on what’s happening, but they it affects them and they’re aware of the subtle or the dramatic changes. What does, let’s just talk about self care a little bit, and we mentioned already getting your family to step in and help and what else? What does self care look like both of you can just let’s just sort of ping pong around a little bit.
Kayla McCain
For me, I would say, I mean, exercise is definitely something that helps me. So I definitely because I’m a mom and I work from home. I mean, it’s pretty strapped down with a lot of responsibilities. I have, you know, my own little garage gym. And I also have a running trail behind my house. So I even will get my boys. And this is kind of funny, because it actually helps them dizzy too, because like I said, I still push myself to exercise. But I do struggle with dizziness. After exercising, and I got a double stroller, double jogging strollers, I stick them both in there, and it gets them out. But it’s also like time for me to, to just take care of myself and find that I can still exercise while being a mom and having you know, everything else that’s on my plate. And then you know, of course, I need my my time too. So I try at least once a month to try to get a massage or some kind of self care thing for myself, that’s just, you know, not only helps me just relaxed mentally, but it also does help with my, you know, my stress levels are high, I’m more likely to going to have an attack. So it just helps in general for me.
Marissa Aldrete
I love that. Yeah, all those things to keep us in check. So we don’t have those attacks. Yeah, that’s for me. Definitely, you know, I still do some of my vestibular therapy exercises, I do some vision exercises, I also do light therapy, and I consider that all kind of self care to keep me functioning. Also, you know, I adjusted my diet. So I watch, you know, the foods I’m eating, to avoid triggers. Also, you know, just sleep is so important. I know, as a mom, it’s hard, especially when you have the little ones, it does get easier, at least when they get a little older. But I’m just trying to stay on track with that. And I’ve really gotten into more of some mindfulness and some breathing exercises that has helped me I’d say and also exercise, I love to just get out and walk and, you know, be outside in nature. And so yeah,
Kimberly Warner – Unfixed Media
it also sounds like having been okay with, like you said, Not maybe going to all the soccer games. And, you know, I think as mothers i It sounds like that’s, you know, we all want to be perfect in the world. And we want to do our very best. And I think maybe self care as a mother with vestibular disorders means being okay with saying no, and communicating that to your children. Does that ring true?
Kayla McCain
I think I think it’s just the struggle with that, and I really felt for you, because I feel like from having little kids, you know, my little one wants me to pick them up and spin around with them, like his dad and stuff does. And I’m like, Yeah, that’s not happening. I can’t. But stuff like that, that kind of breaks your heart because it makes your it’s a reminder that, you know, you’re not the stereotypical like, normal mom, you know, you have a similar disorder. And I, I try to just, you know, I have mindfulness and be thankful you know that I’ve gotten to a place where I was able to have my children and I can function but some sometimes it feels like those things can be robbed. I mean, if probably feel that way that you can’t go to the soccer game because of you know, how you’re feeling. And I imagine that being in my future, I mean, we went to Disneyland last year, and there’s a lot of things I was not I couldn’t participate with, with my family was fun to be there. But it’s times like that we’re like, Oh, I wish I could be doing like, you know, the tea cups with everybody and things like that. But that’s not stuff you just, it’s just not realistic. But it’s kind of also finding I guess, a way to battle knowing that you need to have self care for yourself and you know, not going to those things, but then you’re also kind of fighting that mom guilt as well. So it’s finding like a healthy balance to where you know why you’re doing these things and trying to combat that guilt that comes with it.
Marissa Aldrete
Yeah, it’s definitely a healthy balance. Yeah. I think that’s great. You took a trip with your family. Well
Kimberly Warner – Unfixed Media
after a day at Disneyland, I just have to ask, man,
Kayla McCain
um, and it was raining which also is just you know, you get everything going um, I was okay. It’s again, I feel like I have the type of just mindset where I really don’t want to miss out on life. And I’ve been that way since I got sick. And I started just getting to a point where I started feeling more like myself, I just didn’t want to miss out on things. So it’s whether I’m struggling in the time. I’m still grateful that I did it. And then I’m there for the memories. But yeah, I mean, there at the time, it was nice, because I was still nursing my baby, and they had a nursing room. So it was like an indoor quiet space. And so I kind of see myself. Like, take a breather. I’m gonna hang out here for like an hour go out with our toddler. Oh, yeah. You
Cynthia Ryan – VeDA
know, you were talking about, you know, not being able to go to soccer games tonight. It made me wonder if you have to also communicate your limitations to the other mothers maybe in the groups that you’re interacting with? And how is that is that challenging to? That
Marissa Aldrete
was hard for me. Because I’m sure Kaley, you can really like a lot of people don’t understand what we’re going through. And they just think that how could this possibly still be going on like, you should be better in a few days, or you know, and when it’s going on for like months and years or whatever. So I I really pulled back from a lot of my friend moms like from soccer and stuff, because it just, you know, I got tired of explaining things. And, you know, it was hard, but I was like, I got to do what I got to do. Exactly. So yeah,
Kayla McCain
I’m not a soccer mom level yet. But my son’s in preschool. And, you know, there’s those various moms, I want you to get more involved. And I’m already pretty spread than with everything that I have. And I feel like it was one mom I’ve interacted with a couple times always catches me on a brain fog day, like it’s a day where either I just had a migraine in the previous day, and I’m kind of coming up and I’m very brain foggy. So she’ll ask me all these questions like, did you get such and such email? And I’m like, what? I can’t even function because my head I’m still just, you know, it’s hard when you have brain fog. And I’m always thinking, like, I wonder what these people think of me like, no, like, she’s always has her sunglasses on all the way taking your kid into preschool because, you know, like, I wonder but I’m like the same time like you just got to do you got to do you, you got to take care of you and your children. And if it’s I’m not going to be adding on more to my to my plate than I already have.
Kimberly Warner – Unfixed Media
It makes me wonder I don’t know, Cynthia, you could probably talk to this with you know, vestibular surveys. But if you were in a group of 10 women and one person has a vestibular disorder, if she brought that up, how many of those other women would have something similar or know someone with that? Is that I mean, even likely that if it was brought up with the mothers, one of them might go, oh, yeah, I know someone with that. Or is it more like nobody’s heard of it?
Cynthia Ryan – VeDA
Well, you know, the general statistics are, you know, one in three adults over 40 will have some sort of vestibular dysfunction in their life. So, I mean, it’s not atypical, but I don’t think it’s as typical of people at the mothering age especially, you know, in your, in your 20s. It’s, it’s, we’re, we’re learning that it’s there, especially vestibular migraine, I think we see vestibular migraine and a lot of women who are going through hormonal changes, but, but as everybody knows the challenges in getting it diagnosed, and I think that that’s what you’re, that’s what you’re referring to there leading to is that there may be other women in these groups who maybe have a vestibular problem and don’t recognize it as such. Yeah.
Kimberly Warner – Unfixed Media
Yeah. Yeah. Well, so let’s get back to kids. I was just curious about that. I’m wondering to what childcare looks like. Because especially it sounds like Haley, you might have an episode that is unpredictable, like you’ve had, and perhaps do you ever have to like just quick call childcare and get someone to help out? Or how do you
Kayla McCain
navigate that? I luckily, have kind of a unique situation as of right now, which has been great with having little kids with my husband, I both have been working from home. So he is right there. Most times if something happens, and you know, he, he runs his own business as well. So he’s able to like, you know, step in if I need him to but you know, he’s our breadwinner. So he’s the main, the main worker in the family. So, you know, that’s usually if I like I really need him but yeah, I’ve been very thankful to have him you know, just be so hands on if I need him. But like that incident, for instance, that I’ve talked about previously. Uh, you know, he was I think he was at a time for work. And so he does travel. So with times like that I, you know, I had to call my mom, my sister is also not too far away either. So like, I have family to rely on, which is a little scary because we’re relocating. And so we’ll see how that goes, I think I’m going to end up looking for like a some kind of, on call, like nanny situ or babysitter situation just for those reasons, because, you know, I need someone my kids are comfortable with and somebody I need, you know, quickly. But,
Marissa Aldrete
yeah, yeah, I to Kayla, I had my mom, you know, usually and if my husband would travel to, and she would come and stay with us, you know, and that just helps so much. Because again, it was like that fear if something happens, or you know. So definitely
Kayla McCain
worse for me between my two because I wasn’t on medication. I feel like since having Grayson, that’s my littlest, I was able to get on medication. And that’s just really, really, significantly improved my symptoms, because before I knew I wanted to have a second. So I was still doing the same game plan before the first where you don’t get on medicine that you’re going to have to wean off of and you’re kind of just basically gripping on until you know, your knuckles are turning white. Until I was done having the kids and medications definitely really helped this last time. But I say that, but that’s when my horrible attack happened. I was still on medication.
Cynthia Ryan – VeDA
A lot. On that note, is there looking back, is there anything you would do differently?
Kayla McCain
I feel like I looking back and doing something differently. I did that with my second pregnancy. I learned from the first and I made changes with the second with the second. I also started having symptoms of HCG all over again. So I took the doctor’s recommendation and gotten on medications that were approved during pregnancy. But those medications stopped the throwing up but started giving me classic migraine symptoms. So I a lot of headaches and just you know your your typical migraine. But postpartum I was ready with a plan, I was not going to wake up feeling like I was melting into the couch again. So I worked Dr. Bae on a hole just as soon as this baby is out, this is what we’re doing. And that significantly helped. And it’s the same thing I pretty much did when I stopped breastfeeding each time to because again, hormones were huge factors both times because my body just reacts very strongly when I’m weaning. And you know, there’s hormonal changes. So I had plans for both of those the second time and it was it made a huge difference.
Kimberly Warner – Unfixed Media
We just did an episode on menopause. And it’s same Kayla. I mean, it’s those hormones that get us through these different chapters in our lives. And for some, it actually makes things better and it’s just so unpredictable. It’s wild, how varied these experiences are for us. So at a positive let’s kind of end on a positive note. Marissa, I’ll start with you. But Kaylee chime in? How has having children been a actual actually a really sweet, important experience in your recovery? Have they added anything to that journey for you?
Marissa Aldrete
Oh, gosh, I mean, yeah, I mean, Kayla, you know, like, just being a mom is like the greatest gift. And, you know, vestibular not, you know, I wouldn’t change anything. He just does. I think he’s, like, he’s seen so much like and learned about compassion. And, you know, if after seeing what I’ve gone through, and, you know, whenever I was having a really bad time, or, you know, I’d have to be having an MRI or testing. I would think of Ethan and that’s all I would think about and that would help me, you know, get through things because I just, you know, wanted to be there for him and, you know, be with him. So. Yeah, I mean, we just have this this special bond. I think too, you know, after just him seeing what I’ve gone through and yeah, it’s, it’s wonderful to have to have him Yeah. Yeah.
Kayla McCain
I mean, I can relate to that, in my own way with having little ones I can’t even imagine a sweet 15 year old. I mean, just watching him go through, you know, just you know, having a bad day, but I feel like my son, Declan, homeless before, it’s it’s cute to see the little caretaker that he’s turned into. And I mean, it’s sweet because, you know, that’s my job to take care of him. That’s what I do all day long. And when I am not feeling well, it’s like he knows and I feel like you know, they just watch everything and they just, you know, little sponges, soaking it all in and, you know, if I’m not feeling well, they’ll be like, Okay, we should turn off the Like the money here, your glasses, because he always knows I wear my glasses are not feeling well. And I mean, for, you know, you know that if I come in from working out, I need to sit down because I’m dizzy. So it’s, it’s just sweet to see that, you know, he’s also compassionate as you’re explaining about your son that you know he has this empathy and then sympathy for me for like what I’m going through and yeah, it’s just you don’t think about it I didn’t think about that part of it when I had my kids you know, to me it was I’d be taking care of them and you know, they’re my whole world. But the fact that you know, that just shows how much they love their mom back and wanting to help me too. It’s just it’s one change it for the world.
Cynthia Ryan – VeDA
Really interesting to see if you know, being a caretaker. So early influences his life decisions and his career choices and his relationships. Yeah, yeah. Absolutely. Well, I just want to, first of all, I think that there are a lot of mothers and mothers to be out there who have learned so much during this this time that we’ve been talking and I also want to give a big shout out to all the mothers out there who struggle with vestibular symptoms, and just recognize, you know, how we know that it is a challenge and you’re all you’re you’re just real heroes for for doing this and, and for doing it for love. So Happy Mother’s Day to all. Yeah,
Kimberly Warner – Unfixed Media
Happy Mother’s Day. Thank you, Marissa. Thank you, Kayla.
Kayla McCain
Thank you.
Marissa Aldrete
Thank you.
Cynthia Ryan – VeDA
Thanks for tuning in to ICU this month. We hope
Kimberly Warner – Unfixed Media
this conversation sparked a new understanding of the vestibular journey. And for all of our patients out there leaves you feeling just a little more hurt. And a little more seen. I see you.