ICU – “I SEE YOU” PODCAST
Dizziness and Vertigo Make You Anxious?
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As you know, dealing with vestibular disorders can take a toll on a person’s mental well-being. Feelings of stress, sadness, and uncertainty about the future are common, and these emotional responses can manifest as anxiety. Anxiety and vestibular symptoms can create a vicious cycle where one exacerbates the other, and it’s ever so hard to break that cycle. Addressing anxiety in people with vestibular dysfunction often involves a multifaceted approach that may include vestibular rehabilitation therapy, cognitive-behavioral therapy (CBT), relaxation techniques, and medications if necessary. By addressing both the physical symptoms and the associated anxiety, people can better manage their condition and improve their quality of life. Today we’re going to be talking with psychologist, Joanna Wolfson, and vestibular patient, Lauren Colella, about why anxiety is so prevalent among people with vestibular dysfunction, and what are some practical things you can do to manage it.
This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.
ABOUT THE GUESTS
Joanna Wolfson, PhD, ABPP is a senior psychologist at Rusk Rehabilitation, NYU Langone Health, and Clinical Assistant Professor of Rehabilitation Medicine at the NYU Grossman School of Medicine. She holds a doctorate in Clinical Psychology from Fairleigh Dickinson University, completed her internship at NYU Rusk, and did a postdoctoral fellowship at the Manhattan VA in Health Psychology and Primary Care. She is board certified in clinical health psychology. Dr. Wolfson provides individual and group psychotherapy to patients with a wide range of medical presentations, including vestibular conditions. She co-leads a vestibular stress management group, which has been running for the past 8 years. She also supervises interns in the field of health psychology and presents on topics including integrated healthcare, motivational interviewing, and health anxiety.
Stefanie Adams suffered multiple traumatic brain injuries and had her third concussion in 2017. As soon as she hit her head she felt off-balance and started to sway. Over the next year she developed terrible migraines and dizziness. Eventually the migraines left, but the dizziness stayed. A year later she discovered that she had a perilymph fistula (a hole in the membrane separating the middle and inner ears). When she got the flu, she blew her nose and the room started to spin. She’s had surgery to repair the fistula and is now a VeDA Ambassador and vestibular advocate. In her professional life, Stefanie is an Account Manager for a healthcare communications agency.
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. Right, welcome. Today we are going to be talking about anxiety. As you probably know, dealing with vestibular disorders can take a toll on a person’s mental well being. feelings of stress, sadness and uncertainty about the future are common and these emotional responses can manifest as anxiety, anxiety and vestibular symptoms can create a vicious cycle where one exacerbates the other and it’s so hard to break that cycle. Addressing anxiety and people with vestibular dysfunction often involves a multifaceted approach that can include vestibular rehabilitation therapy, Cognitive Behavioral Therapy, or CBT. Relaxation techniques and medications sometimes if that’s necessary. By addressing both the physical symptoms and the associated anxiety, people can manage their condition and improve their quality of life. Today, we’re going to be talking with psychologist Joanna Wilson, and the stimulator patient, Stephanie Adams about why anxiety is so prevalent among people with vestibular dysfunction, and what are some practical things you can do to manage it? So I’m going to start by introducing Joanna Wilson, who is a senior psychologist at Rusk rehabilitation, and why you Langone health and a Clinical Assistant Professor of Rehabilitation Medicine at the NYU Grossman School of Medicine. She holds a doctorate in clinical psychology from Forli Dickinson University and completed her internship at NYU Rusk. And she also did a postdoctoral fellowship at the Manhattan VA in health psychology in primary care. She is board certified in clinical health psychology, and provides individual and group psychotherapy to patients with a wide range of medical presentations, including this tubular conditions. She co leads a vestibular Stress Management Group, which has been running for the past eight years. She also supervises interns in the field of health psychology, and presents on topics including integrated health care, motivational interviewing and health anxiety. Welcome Dr. Wolfson. Thank
Joanna Wolfson, PhD, ABPP
you so much, Cynthia. Happy to be here. And thanks for having me today.
Kimberly Warner – Unfixed Media
We were just saying before we started recording, I was learning about Joanna and I was like, Where were you in my life eight years ago. You’re doing such good work. So Stephanie, I’m sure you probably can relate. I’m going to actually introduce Stephanie. Before we begin our conversation. Stephanie Adams suffered multiple traumatic brain injuries and had her third concussion in 2017. As soon as she hit her head, she fell off balance and started to sway. Over the next year she developed terrible migraines and of course dizziness. Eventually, the migraines left but the dizziness stayed. A year later, she discovered that she had a perilymph fistula, which is a hole in the membrane separating the middle and inner ears. When she got the flu, she blew her nose and the room started to spin. She’s had surgery to repair the fistula, and now is a vida ambassador and vestibular advocate. In her professional life, Stephanie is an account manager for a health care communications agency. It’s wonderful to have you back, Stephanie, because you were with us a year ago. Yeah.
Stefanie Adams
Yeah, definitely. Happy to be here. Thanks for having me again.
Kimberly Warner – Unfixed Media
Yeah. So for those who didn’t listen to I think that was episode three last year. Let’s recap a little bit, just briefly on your vestibular journey.
Stefanie Adams
Um, I would love to so a few years ago, I like you said I had a few concussions and it was the last concussion that really did a number on my body. But it was interesting because it was just a blow to the back of my head where it was just wiping my hair out of my face and lightly tapped the wall. But that turned into me not being able to walk straight, which eventually led to chronic pain. horrible, painful migraines. And at the time I was in college and trying to finish out my degree, and just suffering in the back end like trying to figure out what was wrong with me at the same time. And eventually, I feel like I’m really lucky because chronic pain is so hard to live with it, the pain eventually left, but it did turn into dizziness. But for me, that felt a lot more manageable than experiencing chronic pain all day every day, especially as a college student. So you know, life became a lot easier to balance. But then, like you said, I got really sick, and blew my nose too hard not knowing what I had. And a week after that illness, I got spinning vertigo, and was in my bed alone in New York City, just trying to manage my, my, my job at that point, and I was spinning for the next year and a half. And I was doing a lot of research because I really felt like it couldn’t just be vestibular migraines, it couldn’t just be what, you know, the doctors are telling me at the same time I was seeing, I think at that point, it was up to 30 plus doctors just trying to figure out what was wrong with me because like this conversation we’ll probably get into I was being told it was just anxiety, you know, underlying from having chronic migraines. But to me, I just knew it was something different. I ended up going to an ophthalmologist, I think she’s a neuro neuro visual visual specialist, during one of my many ventures with a doctor, because I was trying everything at that point. And she diagnosed me with something called binocular vision dysfunction. And she gave me glasses that have prism in them that really helped me see because at that point, my symptoms were very much in my eyes, and I couldn’t, I felt like my eyes were playing games with me and I was like, This can’t relate to the ears. So clearly my eyes not knowing obviously the science but you know, those helped me for a little bit and then I ended up going back because I was like my, I’m still feeling dizzy. And she actually was the one who led me to perilymph fistula was like this is something you know, I work with, you could possibly have this. I’m still seeing she’d made me do this walk in circles in her office and I was doing I wasn’t you weren’t you’re not supposed to walk in circles. But I was walking in circles and she was like, yeah, there’s something in the inner ear. So you know, I did my little research when I got home was going with through vetoes website, which is great. Trying to find a support group found a support group, which but eventually led me to a doctor and I emailed Dr. Ashley P Wacom and Ruckers on a whim and was like please, like, I am desperate at that point, because at that point, I was on medical leave. I just lost you guys for a second, but I was on medical leave at that point. And was like, he was like, I’ll see you next week. Can you come in and I booked my trains to New Jersey and he did all the tests and confirmed it was a perilymph fistula and I can’t even explain the like relief. I had just having someone validate every single symptom I’ve had. And at that point, my scariest symptoms was my eyes torquing like this. And he was like, Yep, I see that all the time with perilymph fistula. I got all my tests done. I got surgery within the month after seeing him and was back on my feet after spending two months on bedrest, and I’ve saved a life change life miracle surgery is it did change my entire life. I was able to function as a human after that. Amazing.
Kimberly Warner – Unfixed Media
Wow, is that just curious? No, this isn’t the topic, but did they go through the ear? Or is it actually kind of like brain surgery.
Stefanie Adams
So he the perilymph fistula surgery isn’t as invasive as like the superior canal dehiscence surgery. So he takes skin from the bacteria punches through the eardrum, and patches up one hole that he had seen was so low. And if he tried to patch that up, it would like affect my nerves. So he patched an existing hole in my ear that we’re all naturally bored with and it was kind of like a gamble if it was going to really help me and if it did, it did end up helping me a lot.
Cynthia Ryan – VeDA
Wow, that’s really interesting. Yeah, fascinating. So I want to ask you about your professional background and how it is that you are involved in working with people is number one medical disorder specifically. And then even more specifically than that vestibular disorders is that is that a specialty in the in the psychology field? Ya
Joanna Wolfson, PhD, ABPP
know, I feel very lucky to have kind of come into this and I don’t think it’s a very common form of psychotherapy necessarily to be practiced. thing, even with people that we see here through NYU hospital, many say that much of their vestibular care feels like you can’t really get it anywhere. So it’s not super easy to find a combination, I think of, you know, vestibular and T and neurology and physical therapy. And Stephanie, it sounds like you tried 30 Different people before you sort of landed on and, you know, team that maybe understood or spoke that language. So just briefly, I’m here in New York City I’m from I’m from the area, I went to a really small graduate school in New Jersey for just general clinical psychology. But I always had an interest in medicine as well, I don’t think I would have been a very good medical doctor. But I, you know, was interested in psychology and I don’t think I even realized going into graduate school, that there was that there were fields of psychology where there was that overlap between health medicine and psych. And even in grad school, I don’t think it was until, you know, my third year that there happened to be a couple of externships or practicums, that I did, that were in hospitals with people with different medical conditions that I got, kind of feel like I found, you know, a role for myself that felt like, Oh, I really can do this overlap between the medical and chronic conditions, people experience, the stress that it causes. The loop, we were talking about this vicious cycle, but just how stress really exacerbates so many medical conditions, whether they’re minor or severe, acute or chronic. And so then I ended up at the last year of grad school doing my internship here, the final year here at NYU Rusk. And I was fortunate enough to have a supervisor I think, Cynthia, you know, Eva, Dr. Eva, my habitual gibberish, shout out who was my supervisor, and she worked almost entirely with our clinic with the vestibular population. And so it was through there that I saw the first person ever that I ever worked with, who had a dizziness diagnosis. And certainly, as I’ve worked with more and more people in there, probably hundreds of 1000s of people that have come through the clinic at this point, but everyone’s story is so different. Everyone’s picture is so different. And I like that it never I feel like I learned something new with each person. And every story that I hear. It never feels like just one treatment. But certainly this topic knows about anxiety. We’ll talk a lot about that. But I do a lot of work in general with managing anxiety. So it feels like a good fit for me.
Kimberly Warner – Unfixed Media
Yeah, it absolutely is. I don’t know, it would be interesting if we took a poll to see if there’s any vestibular patient out there that doesn’t have anxiety. You know, I mean, I just I think they go hand in hand. In fact, there was a recent published paper that talked about the the actual distance in the brain that stress centers and the vestibular centers are very close to each other, as well. So anyway, but I’m not a scientist. So I’m just quoting that from something I read. Stephanie, can you tell us when the anxiety first manifested for you? Was it actually before the concussion? And then it kind of became more chronic? Or did it come from the symptoms?
Stefanie Adams
I’m smiling and laughing because I was thinking about this earlier. I feel like I’ve always had anxiety. And I could talk about this later. But I’ve recently do internal family systems therapy. And I know Joanna, you probably know that very well. But it’s helped me explore where my health anxiety really started. And for me, I had health anxiety, things from the tender age of like six years old, I remember, like, running away from the doctors and hiding under chairs and stuff to not get shots and stuff like that. So it’s something I always knew I had, but, you know, being in college, just living the life like, I didn’t really, it wasn’t something that plagued me like I as a human being like, with my anxiety, it goes, wherever, you know, I can’t really control it sometimes. Like, it just goes wherever, whatever I’m focused on for that week. But obviously, when I have a blow to my head, it all comes up at once where I’m like, Oh, my God, like is my brain hemorrhaging? So for me, I’ve always had health anxiety, but it really manifested when my first concussion happened. And kind of evolved from there. Unfortunately, you know, being so young, you don’t really have the tools or don’t think you have the tools to really face it at that point. So it kind of just overtook my entire life. Once I started getting a concussion. It really was, you know, you’re in college. Like, it’s easy to, like, get bit distracted by like going to parties and like doing school like you have so much going on. So eventually, when I started feeling better for my first concussion, it kind of dissipated. And then of course, the next one come and that all comes back up. And obviously, after my third concussion when I was walking sideways, that is where it just blew up. Yeah, so I would say I’ve always had health, anxiety, and a lot more fun being so far removed from my surgery now in life, being able to hold hands with my anxiety and live through it instead of like, avoiding it. You know, I feel like I’ve done that for a majority of my life. Because healthy anxiety is scary. When you start to feel it in your body. You think, Oh, my God, I’m dying, I have to be, I have a tumor in my head. And that’s the only thing it can be. But yeah, it’s, it’s a lot easier to manage having being so far removed from those experiences in my life. Just knowing what’s currently going on in my reality, not something like that happened many years ago.
Kimberly Warner – Unfixed Media
I can totally relate to you, Stephanie. It’s like, to me, it’s like I had the hyper vigilant brain, you know, this, like tracking, tracking, tracking, tracking. And when you experiencing constant dizziness, it’s like, Oh, I’ve got something to track all day long and get nervous. So, you know, therein lies the vicious cycle.
Cynthia Ryan – VeDA
Yeah. And it’s interesting for me to hear you labeled as health anxiety, I don’t know that I consciously thought of that. thing. And I wonder if there are other vestibular patients out there who, like you had experienced anxiety related to health problems. And then this, this new and, and really disabling thing came along their disorder that just kicked it into overdrive. And also, you know, the other thing that you mentioned, that I think is really interesting is, you know, you, you were young when this happened, you were in college, and you didn’t have the tools to cope with it. So I wonder if that’s, you know, and that’s that could be related to age, it could be just related to, you know, exposure or not to having been through counseling before or have, for example, you know, I grew up meditating. So I’ve always had that as a tool to to manage things like anxiety. And that’s the case with with other people. Yeah,
Kimberly Warner – Unfixed Media
well, can I say one thing about that, Cynthia just because so I grew up also meditating, my, you know, Mom standing on her head all the time, I had all the tools in the tool shed, what I didn’t have was the awareness that my meditation was take, make me feel better. So as we learn from one of our other discussions that just stuck out with me, it’s, as long as I’m trying to remove the experience, my brain detects danger. So even meditation can be a really useless technique, if we’re doing it in order to remove the experience that we don’t want to be having this with my young, you know, understanding of it. That’s why it wasn’t working. It was like, I’m trying to get rid of this. And it’s like, because my brains when I’m in danger,
Stefanie Adams
do that. Like I grew up in a family and a town where therapy was so taboo, and like, any time of like, any type of like, mental health help was really so like, shamed. And people were embarrassed when they had to say like, I’m in therapy. So I think I took that mentality on once I started getting sick, like, I didn’t know what to call, it didn’t feel like anxiety. Like it truthfully, in that moment, the only thing I could say is it felt like I was dying, or there was something wrong with me, like, I couldn’t correlate the two of like anxiety versus what’s actually going on. But yeah, now that I can understand meditation, and I’ve taken it on as one of my coping mechanisms or practices, like I in meditation, visit those moments where I was terrified and I could talk about this all day, because it’s something I’m so passionate about, but like I visit those go to those moments, I visit that person who’s had that experience or me who’s had that experience and I like, give him a hug and say it’s gonna be okay and all that stuff. And it’s, it’s drastically helped my anxiety subside when I’m having harder days with Yeah.
Cynthia Ryan – VeDA
And I do want to talk more about coping but coping strategies, but I want to start kind of set the stage so to speak, by talking about why. Clinically, Joanna, vestibular patients experience anxiety Yeah, what what? Both, you know, physiologically, emotionally? What is the connection?
Joanna Wolfson, PhD, ABPP
Yeah, so I think so much of what was said already, you know, was on my mind. So, first, I think it’s really, Stephanie, sort of, as you’re describing after, you know, not one concussion, but a few, but is really, really terrifying and kimberleigh you to, you know, to all of a sudden feel like, I can’t trust at all what my body’s doing, or I have no idea what’s going to happen next. Or how long will this last? Or will any doctor be able to help me and so, you know, threat was a really great word, Kimberly, that you used, that, first of all, our brains are designed to have some anxiety when it’s appropriate to have it. And so I’ve never met anyone that said, they’ve never felt anxious. It’s a little concerning if someone has something that is threatening, and they don’t feel any anxiety. So you know, we’re wired evolutionarily to have the fight or flight response, which really is our natural automatic, we don’t have to think through it, it just happens. Kind of panic, like response when there’s a real danger. So I would put, you know, all of a sudden, having spinning vertigo or all of a sudden, not falling or not knowing if you’re going to fall or all of a sudden feeling like my body’s totally out of my control, as a threat, I would put that in the bucket of the brain is going to start to have that hyper vigilance and that antenna up. Once someone’s had one episode like that, that hypervigilance again, and I think this happens for anyone, but especially for people who’ve ever been more anxious before or who’ve ever been more sensitive before or who’ve ever had, whether we call it kind of health anxiety, general anxiety are a good reason to try and protect themselves from threats before, they might also be a little more vulnerable to that process. So, you know, anxiety can be a risk factor for kind of maintaining for some people that this tubular anxiety spiral. But plenty of people have this experience of vestibular syndrome or symptoms coming out of nowhere. And that’s enough to really get the brain do what technically it should be doing, which is kind of be on the lookout for someone safety. So in the first place, I’d say anxiety is really a fight or flight response that is initially appropriate. And what can tend to happen is it just hangs on, you know, it sort of looks out for danger, maybe for longer than it needs to or it can’t really trust that I’m fully safe. And the second part is Kimberly, what you were saying earlier about the anatomy of the brain, I think we have a lot of questions about, you know, the amygdala of the brain is the area that houses emotion and emotional control, and it’s right next to the inner ear. And so one question is just anatomy wise, is there this relationship between the inner ear and balance being affected, and then emotions also being affected? Because it’s right there and sort of being harder to control? So there’s so many more things I could say, but I’ll you know, stick with that for now is just kind of a starter. Yeah.
Kimberly Warner – Unfixed Media
It’s, it is definitely an experience like no other when we feel like our bodies are out of our control. And I’ve also heard the term like medical PTSD. And that doesn’t necessarily mean like, oh, I had a bad experience with the doctor, but just the physicality, you know, or an like with you, Stephanie, you had an experience that just suddenly you’re spinning, that is a form of trauma, you know, that your brain is gonna go, let’s try to avoid that. So it makes a lot of sense. So obviously, let’s talk about coping. Stephanie, I think you’ve probably learned a lot of techniques. And you mentioned meditation, what does sort of that look like for you? And are you even doing it anymore? Now that you’ve had the surgery? Yeah.
Stefanie Adams
So I think this podcast timing is coming at an interesting point in my healing journey, because, you know, anxiety is terrifying. And it took me a long time to really accept that it was anxiety because I went to many doctors who told me, you know, you’re just experiencing anxiety. And I think I was saying this the other day, like, okay, it is anxiety, but also what else and because I had so many of those experiences, where a doctor was telling me, it’s just anxiety, it kind of pushed me so further away from facing it, because I was experiencing real symptoms where I had vertigo, and I had dizziness, I couldn’t stand my eyes were all messed up. I was fainting in the hallways, and I wasn’t being believed. So it took me so many years, until six years later after my surgery to really face that anxiety head on. Because as I was saying earlier, Like, my anxiety tends to just go wherever, like, wherever I can focus on for for that time. So after I got my surgery, I don’t think I really faced head on, like, the anxiety that I was experiencing. And instead of like, for a few weeks after my surgery, I could feel that hyper vigilance taking on but like, the more I started to understand that my body was just like, readjusting to having had surgery, and the little blips of dizziness that I was experiencing, like, weren’t gonna take over my entire day, they’re just there for a second, it was able to dissipate for a little bit. But then my anxiety went to work, like all that stuff. And then it’s interesting that like I said, the timing of this, because I had, I have an allergy to peanuts, and it’s really bad. That’s also something that comes from childhood. And a few weeks ago, I had my face blow up. And, you know, that brought all of those health anxiety emotions back to the surface. So I’ve been practicing meditation for two years now. And I meditate every single night before bed, I really take a moment of, of peace, where I’m like, Okay, what does my body need tonight? Is it some, like I’m having a really hard time I’m triggered, like, is there an event that I can relate to, or go to in meditation and like, really provide peace, and I’ve been able to really get in a good place of practicing that. And I think this health anxiety thing coming up for me really recently is like perfect timing. Because I’m, I have a really good control over my meditations and how much it can like move forward for me and how much it can bring peace to events that happened to me a long time ago, that won’t trigger me as much as I’m experiencing right now. So a few years ago, when before I had spinning vertigo, and got the surgery, I took a flight. And that flight actually exasperated my symptoms. And I’ve been trying to face my anxiety now as an adult. And fly again, and I flew yesterday. And instead of like, you know, my body going into that disassociation, it, I felt it, like I was hand in hand with my anxiety on the plane. And I did it. And I’ve never been so proud of myself, and now I’m ready to fly again. But before that night, I was in meditation, like with myself, who had experienced the spinning vertigo, the not being able to walk for a few months, and just trying to, like, meet, like, remediate those times in my life, to bring peace to my present day. And it’s something my therapist and I work on a lot, because I’ve told her that like, I’m really good at meditation, like it helps me bring a lot of peace. And it just depending on the week that I’m having, we talk about, like the fears that I’m experiencing that week, and she’ll recommend or say like, maybe in meditation this week, you should try to explore Steph as a little shit child who’s screaming under the chair, who doesn’t want to get a vaccine, like, why don’t we talk to her and see what’s going on. And I’ve been doing a lot of that. And it’s that’s brought me the most peace but I would be lying if I said that, like, my anxiety has been under control for many years. Because even before I’ve been facing my health, health anxiety straight on, like, I was having mental health anxiety, like, it just depends, like people with health anxiety, I feel like are probably a little bit more susceptible to stuff like that. But yeah, it’s it’s been meditation, knowing that I can go on a walk, because walks have cured me, I promise. The like, you get really grateful when you remember the times that you weren’t able to walk. And it brings a lot of joy to me when I’m walking every single day. Walking meditation, I’ve recently been doing a lot of yoga, and doing a lot of just stretching yoga. And I remember there was a moment last week where I was in yoga and I was laying on the ground and I could see a version of me who used to pray for moments where I could lay flat and not have spinning vertigo. And I was just tears emotions, like, just letting all of that out now has been great, but I’ve needed a lot of time and distance from the events of vertigo and dizziness to be able to like really heal from that time. Yeah, it
Cynthia Ryan – VeDA
sounds like you use a lot of different you know, physical and mental tools that basically calm your nervous system down, you know, meditation walking even, and, and you’ve been going to counseling, so you have someone to talk to about it who can give you feedback. Did your counselor introduce you to meditation or did you learn meditation in a different way?
Stefanie Adams
She did like one of the four first meetings, we talked about it, but I, I’m someone who needs to like, I need to want to do it in order to start it. So that was something I did. Started like two years ago, I’ve been seeing my therapist for now, five years, I think this is our six year anniversary coming up the next few months, but yeah, I had to be the one to want to do that, in order to that took a lot of, like I said, hand holding with my anxiety, because at first I had a lot of shame of like experiencing anxiety. And then I realized that everyone else really does have anxiety too. So it’s fine. So it’s been a lot better to like, face it in meditation.
Cynthia Ryan – VeDA
Right. So Joanna, I’m curious, do you have a protocol that you use, specifically for vestibular patients that that are experiencing anxiety, vestibular patients and or other patients with other kinds of health problems?
Joanna Wolfson, PhD, ABPP
Yeah, so I, you know, for the first thing is, really everyone kind of has like slightly different needs. But there are some things that we generally know, even based based on research based on like the evidence based medicine, a lot of research has been done specifically with the pppd population and kind of understanding, again, sort of starting with the vicious cycle, and what’s helpful for the overlap between any etiology of the vestibular condition, and then the anxiety and stress that it causes. So the first thing that we find, and this is individual treatment, especially in our group therapy setting, you know, the first thing that we almost always do is try to provide as much understanding and psychoeducation as it’s called, of just this overlap. I think, Stephanie, it sounds like you’ve done a lot of work over time to really understand how anxiety exists for you, and that it’s even there, we have a lot of people that will say, like, I don’t really think I’m anxious, or, you know, I never really considered that this maybe was anxiety before, but now that I’m thinking about it, you know, people sort of have come to learn the ways in which they were anxious. And if it’s, if it’s similar to the ways in which their parents have been, or they’ve never really gotten any feedback that, you know, there’s other ways to be experiencing this or cope with this, people really don’t have a good sense of when anxiety exists for them, we really come at it with the idea that the stimulus symptoms, likely now were before happened, for some good medical reason, we don’t always know what it was. But even if we can’t find it, it doesn’t mean that because this, you know, it came from somewhere. And then for almost anyone, like anxiety is kind of a natural follower again. So we really try and explain that we have to tease apart as best as we can, you know, there’s part of it that vestibular but then there’s the alarm system to the vestibular symptoms, and the alarm system is what we’re targeting. So if we can kind of calm that through Stephanie, what you’re doing right, like, body relaxation, and some people will say I have just never been a meditator, I can’t do it. I’m kind of similar, I have a hard time sitting for much longer than, you know, three to five minutes to engage in something like that. But just really like a simple breathing technique is sort of the next step after the understanding of, you know, all the things that go into fight or flight include holding your breath, and includes bracing your muscles. Sometimes other changes happen to vision and to heart rate. But if you breathe, and especially breathe out, it’s incompatible with fight or flight. So we really try and teach people first just check in with yourself, are you holding your breath, you know, and then having a really good practice with it that even if people have no symptoms that they still breathe, still do a breathing technique. So we do a lot of things like breathing, progressive muscle relaxation, sometimes sort of like an imaginary, you know, grounding exercise, imagining being rooted to the ground and safe. And then it’s a lot of what we call cognitive behavioral therapy, which some people may be familiar with, but it’s really identifying what thoughts come up for each person when symptoms come on. And a lot of people will say, you know, the statement is something like, like, oh, no, this is awful, you know, it’s back again, I’m never gonna get better. Or, you know, when it comes up, it’s sort of that like, like, I’m not seeing that happen, because safety. And so we try and think about, we don’t want to be unsafe, we don’t want people to say everything’s totally fine. We walk into the middle of the street when I’m dizzy. But we do want people to kind of evaluate, you know, how do I just speak to my symptoms coming up in a little bit more of a neutral way to not have again, my like, alarm bells go off. And so it’s a lot of how do we get in physical control, mental control. And the very last thing is sometimes just sort of general stress in people’s lives, really make it hard for people to get much better. So I’m always amazed at kind of towards the end when people identify well, like my work culture is you know, it’s always been like really not a great work life balance. or, you know, there’s something about the way that people operate that maybe people are on the go all the time all the time, you know, and they never have just self care time or time for themselves. So sometimes it’s about like, let’s find the stressor, the general stressor, and how do we just kind of level it off a little bit. So it feels like there’s more distance between, I’m always in stress. And I’m just do it Stephanie before bed, right? I’m like doing this meditation for me, and only me. So I said, those are like the kind of overarching components.
Kimberly Warner – Unfixed Media
I love what you say about speaking to your symptoms in a neutral way, or neutral, or even sometimes, like you’ve said, it’s definitely like, and even in a loving, like way, I think that you know, the same that What you resist persists. And I feel like that’s so true with anxiety. And I think that the more we can welcome the guest, and say, Here you are, you know, and you don’t have to be like, overly syrupy with it, but you can but but as soon as there’s, like I was saying about, for me with trying to meditate away my symptoms, it’s just your brains are too smart. You know, they they detect when there’s a sense that we don’t, we’re not safe with something. So yeah, I appreciate that. And speaking with neutrality, which is such is something that I think is like a weak muscle, we just need to practice it over and over again, because of course, we grow up and when things hurt, we say, Oh, and this sucks, you know, that’s what we do. So Stephanie, I want to come back to you, because I know that you’ve, you found some incredible resources in your life. And it sounds like you’re still using those through therapy. And also, just obviously, through your surgery, have there been any other resources that have been valuable to you?
Stefanie Adams
Um, so many. I mean, it’s, I was saying this earlier today, like, it’s been so nice, in this time period in this in my generation, to be able to talk to people about anxiety and being able to share, like some of my fears, and even just with health anxiety, too, like I felt that was something I experienced alone, because of my personal experiences with vertigo, dizziness, chronic pain. But it’s not, it’s something that my girlfriend’s experience, and we can all kind of validate each other like the, for me, it’s been the emotional support, that’s been the most important to me. Having people to relate to having people validate my experience, because coming out of it experience like I had, where I was being gaslighted by a lot of doctors and being told, that’s just anxiety, it keeps your guard up, like, I had my guard up for so many years, being not being able to accept the fact that like, I’m experiencing anxiety, because I’ve just been told that’s, that’s just what it is all the time, you know. So once that guard came down, I really felt like I could connect with other people and talk to them about my experiences and have them say if we I have that too. And it’s literally helped my relationships grow. It’s helped my, like, friendships like it’s just been, that’s been the most important part for me, because for so long, I felt alone in my own experience. And during my vestibular journey, I had Vida obviously to talk to people in support groups, like, that’s where I felt the most validated, Hey, I just came back from a doctor’s appointment, it sucked to like, here’s what they said to me like, and having people validate my experience and be like, that’s what they said to me to do today. Don’t give up like, keep on going. Like I remember right before I found my surgeon, I went to a doctor, and I told him, I’m going to get tested, prepare the official and he said, that doesn’t exist. There’s no such thing as that you’re going to waste your time. And I want you out of my office. And I just left sobbing because I was just so defeated. I couldn’t walk like I was walking, holding the walls, like coming out of his appointment and still was being told, like, you’re not actually sick. And I went online, talk to people from the vestibular support groups on Facebook, and they really gave me life again, to keep on going TO to actually go to that doctor’s appointment. And imagine if I didn’t go, you know, I probably would have been like, it was perfect timing of me getting having been on medical leave and all of that, like, that’s where I’ve just felt the most important part of my journey has been the emotional support I had around me.
Cynthia Ryan – VeDA
I think, I think, you know, not just in the vestibular community, but in our society as a whole. We need to normalize anxiety and, and mental health, you know, that it’s that like you said, we all experience anxiety and it’s, it’s it could be due to a medical issue or as you said, Joanna A work issue and they all build on each other. And it’s okay to seek help. Both, you know, professional help, and, and peer support. And it’s also okay, you know, we use the term self care. And, and it sounds like something that you do extra, like, oh, that’s just you do that to be nice to yourself. But in my, it seems to me like, it’s just a necessary part of living, you have to take care of yourself so that you can face life, you know, with all of your capacity. And so yeah, it seems like there’s, there’s, there’s a lot going on there. Joanna, here’s a question that I think a lot of people are going to ask, can someone, quote, get better? So that anxiety is not an issue? Can this be? I’ll, I’m going to use the term cured. Although I, I hesitate to.
Joanna Wolfson, PhD, ABPP
It’s funny, people often ask me the question, they don’t say it like that. They’ll be like, will my vestibular symptoms be cured? You know, not will my anxiety be cured, I kind of usually say, you know, that if there’s no work on anxiety, or stress, that might be tough. And it depends on what it is, of course, but you know, that I think we all even in our group, we talk about how we all need a level of anxiety. So the goal is not to get rid of it. The goal is to you know, recognize when it’s happening, recognize the symptoms associated with it so that people aren’t misinterpreting every last symptom of anxiety, which really overlaps with many vestibular symptoms. We don’t want people to always interpret any rise in panic, anxiety, fight or flight as Oh, no, my vestibular symptoms are coming back. And I usually call it it’s a lifelong, like living smartly approach. So it’s not like if you only do enough breathing for three months meditation for three months, and, you know, it’s definitely like, I took the flight to Florida, but I have to fly back, you know, at some point. So it’s, it’s not about like, if I only cram all this into three months, and I’ll never have anxiety again, it’s really how do I kind of set myself up with an anxiety practice that really always has to exist, you know, breathing is kind of something that we want any human being to always be aware of, and to kind of always do, and as long as there’s sort of a combination of, you know, I’m noticing, you know, kind of, when my body’s like stress ometer starts to get on a scale of zero to 10, to like that six, that I really need to intervene now, because if I just let it go into that eight to 10 Danger Zone, than I am going to have probably either a panic attack or a vestibular episode or something where things have spiraled out of control. So I think once people learn the tools, and they kind of keep using them, the answer is yes, anxiety can get a lot better. And usually, it’s that someone’s chronic condition can also benefit from that and get a lot better to the one phenomenon I’ll bring up is that even with exposure, so Stephanie, something like you know, taking a flight when you’re anxious about it and doing it anyway, with the any thing people are avoiding as a result of their physical symptoms, as long as people can kind of do it in a safe way, people might find that they’ve done something 50 to 100 times, and it’s finally feeling you know, better. And actually, there’s this phenomenon, trying to remember the the clinical name of it, but it’s basically when even after maybe a year of fear, anxiety about something being gone, it randomly resurfaces a rebound effect. And so I like to let people know about that, because it’s just our brains hold on to a memory. And so as that memory is triggered, for whatever reason, we don’t always know a lot of this is kind of unconscious stuff. And so if all of a sudden, we feel like, you know, we’ve conquered the fear of standing on a subway platform, even though I have a little bit of dizziness, there may be a time where all of a sudden, it like shoots back up. It doesn’t mean you’ve gotten worse, and it doesn’t mean your anxieties no longer cured. It’s just that our brains, again, are sort of remembering the time when I wasn’t sleep, and the same things work again, and usually it doesn’t persist, but it’s something that can happen and not to be kind of like alarmed if that ends up flaring back up at all.
Kimberly Warner – Unfixed Media
Yeah, I’ve had that happen where a couple and even some of the sensation, the early sensations of anxiety that came and I find that it just passes if I just go oh, hey, friend, you know, like if I really just go I know these sensations and it really just it’s almost like it’s just coming to wave goodbye. One last kiss, you know
Joanna Wolfson, PhD, ABPP
that’s the that’s the like responding neutrally to your symptoms. Yeah, how I envision it like just sort of noticing and that’s that’s definitely like a mindfulness task, right. I’m just noticing I’m not reacting like here it is it’ll pass are able to achieve that it usually has pretty good results.
Kimberly Warner – Unfixed Media
Yeah. My husband calls it like the surfer attitude, the surfer? Yeah, he wished he’s like, I wish I could just be some like stone surfer on a sofa. If I could have that attitude with everything in life. I doubt those guys ever get dizzy? or anxiety? Unless maybe they get hit over the head with their sir. Stephanie, you’ve learned so much through your journey. And I know you said you could talk about this for hours, but and you probably had people come to you with like, help me what do what do? What do you tell them? When they when they’re overwhelmed with anxiety? And especially people on their vestibular journey? Do you have anything that you say?
Stefanie Adams
Um, I think the best thing I could say is someone who took a long time to get to where Matt, is to get to a place of acceptance, like pretty early on in your stage of experiencing vestibular symptoms, I think two can two things can exist at the same time. And at the time of my journey, I didn’t really realize how anxiety could play out in my making my symptoms worse, like to two things can exist, I can have anxiety, and I’m also experiencing dizziness and vertigo. I think if I had heard that earlier on in my journey, then I think it would have helped me balance out some of what I was experiencing. I was having panic attacks, probably weekly, and really leaning on people to take care of me because I just couldn’t function and I couldn’t. The world was just so warped. I couldn’t understand like, what was my anxiety? Like, what is my actual sickness. And I feel like if I came to a place of acceptance very early on, that my anxiety is playing a role in this, instead of just having that guard up with with doctors telling me that it would have it would have helped me greatly in my journey. And of course, I don’t regret anything, like my experience is what it is. And I can sit here and talk to you guys about it. And not cry because a year ago, I couldn’t even talk about my journey without crying. Because about figuring it it is but it’s it’s just the acceptance aspect of anxiety. It sounds so weird when you’re talking about it. Like it doesn’t seem like it would work. But when I talk back to my anxiety, it helps me so much like function on a day to day basis. So that is the one thing that I would say is key.
Kimberly Warner – Unfixed Media
Amazing. Yeah. I wholeheartedly agree with you, Stephanie.
Cynthia Ryan – VeDA
Cynthia think your might you’re muted. Thanks. I had I had a kitty noises in the background muted myself. JOANNE I have a lot of people ask me how do I find a psychotherapist or counselor who specializes in vestibular disorders or, or you know that can that can that knows how to deal with the anxiety that comes with chronic health conditions that will understand what I’m going through. And I want to pose that question to you. But I also just, you know, I was full disclosure, my husband’s a psychotherapist and I was talking to him about this the other day in relation to one of the articles that we have, which is counseling for chronic illness. And and he said you know the most important thing in in psychotherapy is the relationship between the counselor and the patient. Would you Would you agree with that? And what else would you tell people when they’re looking for a mental health care provider?
Joanna Wolfson, PhD, ABPP
Yeah, I think we think about any, any articles of our own that talk about like, in general, for therapy for psychotherapy, what are the things that matter the most it is things like compassionate provider, someone who’s supportive, who listens, who you feel like kind of unconditionally is there for you. And I think that even if you have someone who’s super knowledgeable about a subject matter if you don’t feel necessarily like those things are met it might be hard to feel like you’re going to trust or benefit you really this is true for people with their medical providers to you know, they have to know that this person seems to really care and want me to get better and believe that I’m going to get better. So if those qualities are missing, you know it’s been documented to the people’s medical journeys are harder. So um, but but then you know, certainly psychotherapist specialize in different things. I would I would really, you know, if someone came to me for a couple of days therapy, I would find someone better, you know, I wouldn’t necessarily try and see someone just because I care about them, I would still look for better specialists. So I think if people with vestibular conditions are looking, you know, some good bets or people who might identify as health psychologists, so probably if there’s a, like a medical center, medical clinic or hospital in the area, even if people don’t have experience with this particular conditions, anyone who’s worked with people with pain or other chronic autoimmune conditions, or things that can flare up under a lot of different circumstances, those people probably have a pretty good handle on also working with your specific symptoms. Sometimes people who identify as like rehabilitation psychologists, so medical, physical and medical rehabilitation psychologists. So I currently am in like a rehabilitation Medical Center. And I know some of these may be few and far between. But then, you know, a lot of people that practice cognitive behavioral therapy, also probably have a lot of the tools that can also be applied to what we were talking about before, just being able to identify the thoughts that come up about the symptoms, trying to respond in a little bit more of a realistic or positive or neutral way, and then helping with exposures. I really think that sometimes if a psychotherapist of any kind is able to speak to a medical provider, you trust a physical therapist you trust and get a little more information. That’s also very helpful that collaboration for them to kind of understand a fuller picture of what you’re going through. And for everyone to feel like we’re on the same page about the goals and how we’re treating this.
Kimberly Warner – Unfixed Media
I think that’s such a comprehensive answer, Joanna, thank you for that. And I want to just add before we end, or maybe even this is more of a question, but my suspicion is that trauma therapists are not probably the best place to go for someone experiencing anxiety and the singular symptoms only because sometimes trauma therapists tried to bring you into the experience even more without the like the cognitive understanding of like, trying to like neutralize it. I did a sequence of brain spotting, which was more of like bringing these more and more into it. And it didn’t reach traumatizing. But it didn’t do anything, either, because I didn’t have that cognitive piece of of neutrality. I don’t know have you had? Have you had a thought about that?
Joanna Wolfson, PhD, ABPP
Well, I think I think that’s I think that’s right. So I think first of all, what’s interesting is I’m thinking about even referrals we might make after our program, and that for some people, I do think trauma therapy can be very helpful as a next step. And, you know, when people it’s documented when people have grown up in traumatic household or had adverse experiences or have PTSD of any kind, they are more likely to have health conditions and physical symptoms, and some of which can be distributed in nature. So but I think, Kimberly, you’re right to say, if someone doesn’t have the really clear understanding of all the reasons why my body might be doing what it does, you know, if trauma is sort of addressed as going back and revisiting something stressful, people are going to view the stimulus symptoms as completely separate. So many people see them as completely disparate and require medical treatment, and mental health treatment. And usually, it’s more of that pairing of will these two overlap a lot, you know, and how do they overlap? And let’s first just understand that not every physical symptom, you know, Stephanie said earlier, like means the brain tumor is happening or, you know, that there is something completely unexplained. And once people have like crossed enough T’s and dotted enough eyes, you know, we can kind of say, All right, we may not know, that’s really hard and frustrating. And I know it’d be easier if we knew, but let’s just see what how much traction we can get first with just lowering physical, physiological response. And then usually kind of a story comes out sometimes for some people or traumas a part of the picture where then the transition can be helpful in that order, I think.
Kimberly Warner – Unfixed Media
Yeah. Excellent.
Cynthia Ryan – VeDA
And I’ll just also let people know that there is a there, you can always look, you know, as Joanna was saying, at your local health care organizations, for mental health professionals, there’s also a website called Psychology Today that has a directory of mental health care professionals. And you can filter by things like chronic illness, and, and also particular types of therapy like CBT. So check that out. Check out the articles on VITAS website about counseling with chronic illness and also Oh, an article that Joanna just updated for us about, you know, the emotional aspects that go along with the similar disorders.
Kimberly Warner – Unfixed Media
Amazing. Thank you guys. This is such an incredible conversation. Wow. really valuable. I
Cynthia Ryan – VeDA
think I what I want to just end with is anxiety is normal, and there’s something you can do about it. So don’t give up. There’s hope. And there’s community out there to support you through it. Thanks for tuning in to ICU this month.
Kimberly Warner – Unfixed Media
We hope 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 heard. And a little more seen. I see you.