Why Do You Feel Spacey? Dissociation and Vestibular Disorders

In the newest episode of the ICU - "I See You" podcast, guests Dr. Yonit Arthur and Melinda Reed join the hosts to dive into the unnerving vestibular symptom often referred to as Dissociation, Depersonalization and Derealization. These experiences are characterized by a sense of unreality and detachment from one’s surroundings, body, emotions, and self. These experiences are characterized by a sense of unreality and detachment from one’s surroundings, body, emotions and self. Some patients report feeling “strange and not in control of themselves” or “being spacey and out-of-body.” In other words, a very scary occurrence to have on top of the already challenging symptoms of dizziness. 

This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media. https://unfixedmedia.com/

About the Guests:

Melinda Reed worked as an Occupational Therapist for thirty five years mostly in pediatrics.  She was very active all her life with activities like hiking, biking, running and kayaking. In 2016 she was painting a ceiling for the better part of a day, and the following day woke with a very stiff neck and resulting positional vertigo. She continues to have episodic dizziness as well as neck pain, however, she keeps busy doing the activities she did in the past despite the dizziness. 3 years ago, she retired as an Occupational Therapist, but is also an artist and writer, as well as a part time real estate agent. 

Dr. Yonit Arthur, AuD (or "Dr. Yo") is a board-certified audiologist, vestibular specialist, and mindbody coach who specializes in helping people with chronic, medically unexplained dizziness and other vestibular symptoms. As part of her commitment to helping as many people around the world as possible via free and low cost education, Dr. Yo has a YouTube channel and podcast called, The Steady Coach, and offers a completely free, comprehensive course to anyone suffering from chronic dizziness symptoms. You can learn more about her work on her website, https://thesteadycoach.com.

VeDA relies on your support to help vestibular patients on their journey to find a life rebalanced. You can make a real difference by making a donation at https://vestibular.org/donate/

If you are experiencing vertigo, tinnitus, dizziness, imbalance, brain fog, or other balance-related symptoms, VeDA may be able to help. To learn more about vestibular conditions and get help finding a diagnosis, treatment, coping tools, and support visit https://vestibular.org/

For help finding a vestibular healthcare provider visit https://vestibular.org/healthcare-directory/

If you are a vestibular healthcare professional and want to reach more patients, join VeDA's Healthcare Provider Directory by becoming a member at https://vestibular.org/article/resources-for-professionals/professional-membership/. Additional benefits include patient education articles you can brand with your logo.

#LifeRebalanced #MakeVestibularVisible #Vertigo #Vestibular #Tinnitus #Dizzy #Balance

Transcript

Cynthia Ryan  

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.

Cynthia Ryan  

And I'm Cynthia Ryan. And we are your hosts on this journey of discovery.

Kimberly Warner - Unfixed Media  

Hello, everyone, I'm so happy. You're all here today for this really important discussion. Oh, it's a heavy one though. Today we are going to dive into the unnerving the singular symptoms of dissociation, depersonalization and derealization. These are experiences that are characterized by a sense of unreality and detachment from one's surroundings, body emotions and self. Some patients report feeling strange and not really in control of themselves or being spacey or out of body. In other words, a very scary occurrence to have on top of the already challenging symptoms of dizziness. Today, we are joined by two incredible guests who are going to discuss this bizarre, challenging symptom, why it happens and how we can bring ourselves back into a sense of agency and connectedness within our bodies, thoughts and environments. So I'm going to introduce our first guest today, Melinda Reed. Melinda welcome. Hi, Melinda worked as an occupational therapist for 35 years, mostly in pediatrics. She was very active all of her life with activities hiking, biking, running, kayaking, we all know about that. In 2016, she was painting a ceiling for the better part of her day and the following day woke up with a very stiff neck and resulting positional vertigo. She continues to have episodic dizziness as well as neck pain. However, she keeps busy doing the activities she did in the past. Despite the dizziness three years ago, she retired as an occupational therapist, but is also an artist, and writer and a part time real estate agent. So welcome. We're so happy to have you here. Thank you.

Cynthia Ryan  

Welcome Melinda.

I think yeah, this is really great.

Cynthia Ryan  

I think people listening can especially vestibular patients can relate to having a second career after service. So does make it a lot of people get into more into the creative things that they didn't have time for. So I'm, I'm excited to hear more about that. But I'm gonna also go ahead and introduce our other guest, Dr. Jani Arthur or Dr. Yeoh, as she's known, who's a board certified audiologist, the stimulator specialist and a mind body coach. She specializes in helping people with chronic medically unexplained dizziness, and other vestibular symptoms. And again, the people listening are going to really connect with the medically unexplained How many of you are out there. So as part of her commitment to helping as many people around the world as possible, via free and low cost Education, Dr. Yeoh has a YouTube channel and podcast called The study coach, which I think many of you have probably seen. She offers a completely free, comprehensive course to anyone suffering from chronic chronic dizziness symptoms. And you can learn more about her work on her website, the city coach.com. Welcome Dr. Yeoh.

Thank you, Cynthia. That was lovely. Oh.

Kimberly Warner - Unfixed Media  

And by the way, Dr. Yeoh has an incredible episode just on this topic, too. So check it out. It is I think titled dissociation if I'm right, Dr. Yellow,

it's, you know, it's funny, it doesn't have dissociation in the title. So I had trouble finding it. Looking for it. But it's why you feel so Spacey. When you're when you're Yes. Yeah.

Cynthia Ryan  

I like that. Because I mean, a lot of people don't know the term dissociation. So when they're when they're Googling these these feelings, they're going to use words like Spacey.

Kimberly Warner - Unfixed Media  

Yeah, I did not know what was going on with me. I felt I was like, am I having a kundalini experience? Am I having a psychotic break? I remember being so confused by this sensation. So it feels very comforting to be in the company of another fellow vestibular patients here, Melinda. Do you tell us a little bit about your vestibular journey just to give us some background?

Sure. So, yeah, you you talked about the origins and and all of that. But um, yeah, so I was evaluated twice at the first Swedish Hospital in Seattle through their vestibular testing program. Initially, they came up with posterior canal BPPV I can never get those letters straight. But um, two years passed, and there really it had changed into dizziness. But, you know, I was experiencing all these secondary symptoms and dizziness, and I ended up going back to the University of Washington for another evaluation. Because at that time, I really didn't know what was going on. I didn't have the information, the research to say, Oh, I'm just one of the many out there now. But at any rate, the evaluation at the University of Washington came up with it was still right, right here. unspecified. BPPV. That. And he, you know, his comment was, well, you know, there's about 5% of you folks that, you know, the Epley maneuver. Well, he said, That's why the Epley maneuver probably didn't work is because we don't know what canal it is. And that, you know, I was that 5% That it didn't seem to resolve through different maneuvers time, what have you. So that was kind of my final diagnosis, and his you know, so his comment was, rightly so, you know, you're an occupational therapist, you know, just you kind of know what to do. Go home and do it. And so, which I did, however, you know, it's just such a different, it's so much easier to work with a patient than to make yourself stick with, you know, all the host of visual exercises, balance exercises, you know, neck exercises, what have you bet. But, you know, I did, as best I could. And long story short, over the course, I'm going on seven years now. It has transitioned over time, the first couple years, definitely sensory overload with many different types of visual stimulation, lights, hallways, sidewalks, people coming at me, it was kind of a constant challenge out there. Over the years, you know, year by year, I can see these little bits of progress where an example might be, I can go on a hike now and step over rocks, and not feel like I'm going to trip on them, or kind of question, my depth perception. Because my depth perception definitely has been altered. A little bit through this, just my, I think visual vestibular system, just just off a fraction. So I've seen progress over the years, but I still notice more isolated events, where it's like, okay, there it is, again, you know, it's not gone. It's just under the circumstances. This is where I start to get dizzy. This is where I lose my sense of position in space where I start to get a little frazzled. And, you know, I can almost kind of define what those experiences or situations look like now. But going back to this depersonalization aspect,

Kimberly Warner - Unfixed Media  

well, actually, let's go back let's jump into that I want to hear a little bit from you and eat and then let's build go into the more specifics of that because I know you had a specific experience. So

Cynthia Ryan  

I want to call out what you said unspecified because I think that is again coming back to this not A lot of people, even if they get a diagnosis, it's not either sometimes it's not a specific diagnosis. They're just told they have vestibular apathy. And sometimes it might not be the accurate and accurate diagnosis, especially when it becomes chronic, which is something that I'm sure Dr. Jochen share more about. Sure. Dr. Yo, tell us why you started working with vestibular patients, you know, what, what was your you know, I know you started out as a, you know, a clinically trained audiologist, you also you know, are a physical trainer and you do this, you know, Mind Body coach thing. Tell us about how that kind of the evolution of that in your career

stories like Melinda's that's why, exactly, because of stories like hers. I was listening to the story and I was just, I mean, you obviously have such a, just so much skill and so much self discipline and, and just such a so many gifts in your life that you've been able to, to just have a wide open life despite having gone through what what you've gone through. But I see a lot of people who, too didn't. And it doesn't always look like this, unfortunately, people's worlds really shrink down. Oh, absolutely. And as a conventional audiologist, I couldn't do anything about that. I mean, I was I could be supportive, I could say, wow, you know, I get it, you know, you're not going crazy. This isn't a kundalini experience, per se, this is this is legit, that you're really going through this. And I think that's very helpful. I certainly don't want to undervalue that. But I really, I wanted to be able to do a little more than that to help people. And so that's that's what I do. Actually, not just primarily, this is all that I do nowadays, I work with people who, whose worlds have gotten really small and who are really debilitated by their slowly. There

Cynthia Ryan  

are so many people like that out there. I'm sure you have quite you know, a lot of people coming to you.

Yeah, well, it's it was it really all took me by surprise, I would I made I made a YouTube video a few years ago, where because I was working with people locally, I was doing some contract work at a PT clinic at a neurology clinic. And I was just floored by how many people seemed interested in this video. I mean, I had never really grasped not just the number of people who are going through situations like this, but also how little they get helped by the medical community. I mean, Melinda, thank goodness, you as an occupational therapist, had some pets have no knowledge, oh my gosh, but so many of these folks really don't. And even those who are medically trained, I see a lot of nurses, for example, who have so much medical knowledge, but they don't know how to put any of that knowledge toward helping themselves get out of the situation that they're in. So yeah, it's, again, Melinda, my, my heart goes out to you. I just, I just felt that on a deep level when you were talking about your experience. Yeah.

Yeah. Thank you. It's, um, and what you're saying, you know, absolutely. And I have absolutely seen that in myself. And the tendency of by all means, that tendency would be to just kind of hole up and try to stay within the confines of my comfort zone. And to this day, it's, you know, even though I have the knowledge about the necessity, to kind of keep pushing the envelope and, you know, find the trick is finding the balance. What, you know, what is over the top for me realistically, versus what's a good healthy challenge in regards to dealing with the world out there? People, lights, circumstances, you know, yeah, there's a huge gray area there. And my knowledge certainly has helped me understand the neurological aspects of what's going on, which for me, I'm sure has helped make sense of your feelings

Kimberly Warner - Unfixed Media  

and understanding of what's going on is so critical. I mean, I felt isolated, so much that I, I mean, it took literally six years to get an official diagnosis for years to kind of find my community but I was so scared and so my life was just this big, so I can really As you know, the work that this whole community is doing to raise awareness, and amazing lives. Melinda, let's let's go into sort of the the topic now I want to hear specifically about your experiences of dissociation or how did you describe it? And what that experience was like for you?

Sure. Well, you know, I had up till like, I don't know, when I was approached to do this, I had never heard of the the terms derealization depersonalization disassociation. And at first I thought, Oh, my God, thank God, I don't have that, in addition to everything else, you know, and then I went online to, you know, look at, well, what is what does that really mean? You know, it's a, they're very umbrella psychiatric terms that, you know, I couldn't put a finger, you know, what does it mean? What does that mean? So, I went on line, and I found it. I'm sure you all have your own inventories and what have you. But I found an inventory Cox and swit. Swinson? I'm going to talk about

that. Yeah. Oh,

that Okay. Fine. And, you know, read the whole research study is very interesting. And then I went through their checklist of, of the inventory of what they were asking the vestibular patients, and I looked into that, well, my first thought, well, of course, I have all those, that's just the the neurological consequences of having a vestibular disorder. Some standing out more than others for me personally. But I guess, in a nutshell, it's like trying to define the undefinable. In this realm, everyone experiences is a little bit differently. And maybe no one description when I read through this completely hits the nail on the head. Because it it is, it it just feels like such a deep neurological, little glitch in there, that kind of supersedes our ability to put language to it completely. You know, it's just such a, you know, goes down to our vestibular system, which is just so core to our kind of elementary neurological makeup. But anyway, what I went through this list things that stood out to me as being Yeah, I can certainly see that events seem to slow down in time when I'm in a highly stimulating environment. So when I come by, so to give the best example would be like when I'm in a meeting, and I'm sitting, everyone else is sitting, we're all talking, no problem. I'm on track, got it together. Then all of a sudden, the meetings over and 1520 people around the table, all of a sudden, all stand up, and I'm supposed to stand up with them, and pull everything together and walk out the door. Well, there is this experience of what should just be automatic, not a big deal, all of a sudden, becomes a conscious process where I sometimes feel if it would stay in the automatic realm, and I could just do it, chances are I pull it off, but there's like a glitch, a processing glitch, where all that information my brain is having a hard time tackling it all at once. And so it feels like all of a sudden, I'm thinking about it. And I have to it becomes feels a little robotic, like okay, okay, stand up. You know, just focus on my purse, getting my pen in my purse, folding up the books. Stand up and walk out and try to ignore everything else going on in the room. So that's one aspect that I can say to this day, I think falls into the realm of this disassociation, where my proprioception, you know, my ability to efficiently quickly process say, my proprioceptive input, you know, what my body where my body is in space, and my ability to take all that visual, sudden visual information, combine that in with it, and then try and execute my motor planning is just asking, it's challenging my system. And thankfully, I've never not yet pulled it off. It's and it's just, it's an uncomfortable feeling. And, you know, I think you could look at oh, gosh, you know, feelings of detachment is another kind of symptom under this depersonalization. So, in that moment, yes, I feel kind of detached, like, I'm kind of standing back as an observer watching my body go through this versus feeling like I've got it all together. And I'm grounded. And I'm, I know where I'm going. So I think all these different symptoms that kind of people talk about in the realm of feeling Spacey? Well, that's the same experience, that in that example that I gave, it's another maybe way to describe for me that, you know, not having it all together.

Kimberly Warner - Unfixed Media  

Really, really well said.

Yeah, and it's, it's, I guess, the other thing I'd like to add to that, and then I'd like to hear, you know, I'll move on, but is that I think, you know, you'd be interesting to have a video of me taken, you know, I'd be interested in this, it feels like in that moment where I'm having to pull it together, everyone else is doing their thing, you know, to me, it feels like I look clumsy. I, I'm acting slower than the rest. Like I'm looking a little awkward, as I'm moving through this short, little, little episode of motor planning. And yet, I'm guessing I don't look near as awkward as I feel. And that there is a discrepancy there that my perception and my stress around these little, little complicated episodes that just, you know, it's a part of life, the moment you go out there, there's going to be these little episodes that you're not prepared for. And, and I kind of think I look, I look a little more normal than I feel.

Cynthia Ryan  

Right. Melinda, I like how you contrasted the spacey feeling with feeling grounded the opposite. You know, and I think that probably later on when we're talking about what you can do during these moments where you're, you have that, that feeling of dissociation, that maybe that will come into it. But Dr. Yeoh, can you explain the difference between dissociation, the real is derealization and depersonalization. And, you know, what, you know, from, you know, clinically how you would, how you would explain this as a symptom of a vestibular disorder or some other chronic illness.

Yeah, so there's just so we're clear, there's a lot of overlap between them because as Melinda very well said, that you're really dealing with very subjective symptoms here. So it's not like oh, my arm hurts, and it's right here on my elbow. It's a very in your head kind of feeling. So there, the distinction between them is not always super clear. But dissociation is kind of an umbrella term. So dissociation is an umbrella term for feeling like you're either not in the moment not in your body not connected to your current present experience. Whereas depersonalization, depersonalization and derealization are subtypes of dissociation. So depersonalization would mean what Melinda was saying how she kind of has this sense that she's watching herself feel like she's not really in that experience of getting up out of her chair. And there's again she she knows she is because she's not really on the other side of the room. But there's this sense that she's not in her body. So that's that's depersonalization. Whereas derealization is a sense that you're kind of in a dreamlike state, you're not you're not. In reality, there's a dulling of reality. So there's, people have described, like, they'll go through this whole experience, and then they'll look back and they'll be like, That doesn't seem like it was real. At the at the time, like, their memories of it don't seem real. So does that. Does that help?

Cynthia Ryan  

Oh, yeah. Yeah, that's fascinating. And I think that a lot of people can relate to, to a little part of each of those. I hear this tubular patients all the time telling me that they, they just don't feel part of themselves.

Kimberly Warner - Unfixed Media  

Yeah, I want to actually take that a little further with you, Yoni just because it's, it's like, oh, this is so fascinating. And let's, let's just jump right into, like, why this is happening? Because I know. You talked about, like, some when as a vestibular versus a central vert, or what

is happening there. Yes. And I loved Melinda used one of my favorite words, when she was talking, I was so excited. She said the word stress, and I was so happy, she said it. I was like, I'm gonna get to talk about stress now. Okay, so dissociate. So okay, let me let me start this way. All experiences are created in the brain. So whether you have a cut on your arm, and that's, you feel like that's hurting, or there's no cut on your arm, but you feel like your arms hurting your brain is what's feeling pain. So when you have any kind of dissociation type feeling, it's your brain that's experiencing it. So the question is, is that sensation coming from or that perception rather, coming from a sensory problem? Like, there's an issue with my inner ear, and my brain is getting confused about where I am in space? Or is it for some other reason, for example, depersonalization happens a lot of times with anxiety disorders. And this is why I think this particular sensation freaks people out so much, because they, they feel like they're going crazy. They don't they don't realize this is this is part of the vestibular condition. So all that being said, there are two, I think, two really important components to understand when it comes to dissociation. The first is that when you have some kind of vestibular issue, so in other words, when one of your ears or both of your ears or some other component of your balance system, is not giving your brain as much information as your brain needs to make a good judgment about where you are in space, your brain can get confused and disoriented. And that can lead to this perception of dissociation depersonalization D realization. So we call this sensory mismatch. And the reason it's called mismatch is because your brain Well, balance is complicated, right? I mean, so if, if you if you imagine your poor brain had to figure everything out, every time you moved, and had to take in all the crazy amount of information, your senses, were giving your brain every time you had to take a step, it would be super slow, and it would be very inefficient, and you would probably never move, right. So what your brain does is it has these templates that it uses. It has like a, like a framework that it uses. It's like, okay, my past experiences, this is the information I was getting from the senses. This is what this meant. And so now, all it needs to do is compare the new information to the old templates that it has to know what's going on. This is why it takes kids a long time to learn how to walk. It's a pretty complicated process for you to build those templates, right. So what happens with this sensory mismatch is your brain's predictions are not being met your brains like wait a second, when she's walking, I'm supposed to get this information from this year and this information from this year. Wait, what Wait, but she her eyes are saying this, but her ears are saying something else. What does that mean? And it gets it gets overwhelmed. And that sensory mismatch is you can kind of think of it as a symptom of your brain saying I don't know what any of this means this is too much information, which brings me to that second component. So, this is why the stress response system is such a critical element to understand when it comes to these particular symptoms. Now, again, as I said earlier, this is not just you're just anxious, this just in your head. That's not what I'm saying. But your vestibular system and your stress response system are very closely connected in your brain. If you think about like what is the most important thing for any eat animals survival. But before food and water, you have to know where you're in space, you have to know you're gonna get eaten, you're not going to go anywhere, you're not going to be able to get food or water if you don't know where you are in space. Very, very, very fundamental, important components of living, right. So our brain prioritizes that information. And when the vestibular systems a little confused, and your stress response system may be reacting to other stuff in your environment that has nothing to do with vestibular stuff, you can see how this could be a recipe for the personalization derealization being much, much worse. And this is why the studies show that people with anxiety, panic, and other I hate to use the word psychiatric, but the emotional components to to their experiences have much, much worse, much more intense depersonalization and derealization symptoms, even when the origin is sensory meaning even if your symptoms started from a vestibular issue, if you have panic, anxiety, lots of stress and distress, it's going to make those symptoms much much worse, because those symptoms are so those systems are so closely intertwined.

Cynthia Ryan  

So it's such an important connection, you know, that the mind body connection and recognizing that there is a physical component to a psychiatric or, you know, emotional or mental symptom. So that you you know, you you tell you were saying before both Melinda and Kimberly, you know, you want it, you had to tell yourself that you're not crazy, and you're not. But that's how you feel. And there's also how you that that that worry of how you're being perceived by others. So Melinda, what do you do? What to explain what you're going through to your friends and family so that they can understand because I obviously can't, can't see what's going on in your brain?

Right? Well, is that's just a tough you know, I've probably over you know, we're going on seven years, kind of tried the gamut of, you know, early on, when symptoms were maybe more constant more acute, and definitely had sensations with left hand turning, because in my right ear. Well, I would describe it that, well, it feels like I'm walking my feet, I can feel my feet on the ground, but my head feels like it sitting in a tub of water. And every time I turn my head, my brain sloshes in this bowl of water until it settles back down and I can continue on. Well, that was one description. Another description was, you know, I just feel dizzy, you know, I turned my head and I get a wave of and this lasted for quite a few years after the bowl of water sensation, it kind of moved into like this wave of dizziness coming over me every time I turned my head to the left and lasted maybe five to 10 seconds and then it would and then it would disappear and I could continue on. You know, I

Kimberly Warner - Unfixed Media  

was a part of this Melinda Sorry, what would you say anxiety is a part of that for you when you would feel those experiences or when you were in the meeting and everyone's standing up and you're

definitely it definitely the meetings, you know, because of that social you know, we it's hard to overcome that social sense of wanting to fit in you know, it's kind of like a primal you know, desire we have. And so, you know, that's with me to this day, but I am now I don't explain it to people I don't say you know, go in and say you know, excuse me, excuse me, I have a vestibular disorder. If I look a little, you know, off. I just don't I just don't go there because I've come to accept the fact that you know, first of all, I don't think I look as disorganized as I feel. And I have so I don't describe it very much in my normal world, and I don't expect like in the past asked with family, even my husband, you know, it's not that they're not trying to be sensitive, but you can expect them to understand sensations that are not really definable very well. And so these days, I don't I don't spend a lot of time going there unless it's really appropriate. And it just needs to be known. That, you know, yeah, I've got a vestibular disorder, and, but mostly, I just try and grant myself some grace. And, you know, say, you know, I'm gonna feel this, it's okay, just, we'll just do it, I'm not going to fall, I have never fallen through all of this, despite what I feel. And just, it's not easy. And it's not that I don't get stressed. But I just tried to take a deep breath through some of these things. And I, there's, you know, by the afternoon, it'll always be worse than in the morning. So I try to work with some of my own personal limitations. Were like meetings in the morning are gonna go better than if I have a meeting in the afternoon for a whole variety of reasons. And, you know, so I try and work with that. Yes, there is still stress involved, may never really fully get on top of that. But I've learned to kind of breathe through that. And I think, another thing that occurred to me, it's like, okay, well hold it now. Everybody has stress. A lot of people get nervous in meetings for a whole vote, different set of variety of reasons than why I'm getting nervous. And so I tried to put my issues in perspective of, I'm not the only one experiencing stress in the world, even though it feels like it. Other people, for other reasons, are dealing with similar stuff, just not the same, quite the same thing. So

Kimberly Warner - Unfixed Media  

I'm glad you're bringing it back to stress, because I feel like we should, we should just keep coming back to this. And I want you actually said something about this in your video. Dr. Yo, when the D realization is a nervous system response. It's as if the capacity has been so far exceeded that the you said the body shuts down. And that's why it's happening. Can you talk a little bit about that? Because I think yeah, people will relate.

Yeah, yeah. Yeah, I mean, sensory overload, right? To put it in, in really simple terms. But if you think of a deer being chased by a predator, right, so everyone's familiar with this idea of the fight or flight response, where you know, you're, you're either trying to run away from a predator like that deer, or I don't know if anyone has ever, you know, been stuck in a traffic jam and maybe gotten a little mad at someone who cuts you off. So that's the fight response, where you're like, I just, you know, how could you do that to me, you want to you want to, you're responding to danger by getting into a fight response. But what fewer people are familiar with is the freeze response. And I use the deer as an example because when a deer you know that that phrase, the deer stuck in the headlights, when when deer are overwhelmed by sensory information, or when they're about to get stuck, get caught by a predator, they'll freeze. Our nervous systems can do that, too. When we go into full overwhelm, we go into what a psychologist may call parasympathetic shutdown. And I know that's a very big phrase. But basically what that means is your nervous system says, Alright, just dissociate him, dissociate her, we are now we cannot get away from this danger. We were either playing dead or we are dissociating from our bodies. So whatever happens next, we're not fully present for us. I know it's a little bit of a scary thing to think about, but it's actually a protective mechanism. It's a protective mechanism of the nervous system. So what happens with either a sensory mismatch or the stress response system going haywire, or both? Right? We go into that sensory overload and freeze response. So that's where dissociation happens.

Cynthia Ryan  

I wonder if this these symptoms are on a, like a scale, you know, um, Melinda, you were you were saying that you don't think that anyone else will be able to relate to what you're going through. And I wonder if, you know, it's more intense for you for people with vestibular disorders and, and obviously some people are, are not as you know, sensitive to, to sensory input as others but I wonder if you know for so for example, for myself, I don't have a diagnosable vestibular disorder. But I do get overwhelmed by sensory stimulation, sometimes, you know, I was, my husband and I were on vacation recently. And we were in a, an interpretive center. And so there was a lot going on, there were interactive exhibits, and there were videos, and there was background noise. And there were, you know, other people moving around and talking. And, you know, after an hour, both of us were looking at each other like, Whoa, we're a little overwhelmed. That's about all that we can take. So, I think you're onto

something, because it's super common, actually. And there's so unfortunately for us, this has not been well studied. But, and so the estimates I'm gonna give you are kind of laughable because they're so big, but anywhere they say anywhere from 15% to 80%, of the general populace. Right. So How helpful is that? Experiences symptoms of depersonalization and derealization? Sometimes, but it's a matter of, yeah, it's a matter of time. So today, we don't talk about it. Yeah. And its intensity, but also the number of symptoms. So Melinda had mentioned that DP Dr. scale that was developed in the early 2000s. And they've done some studies comparing people without vestibular conditions to people with vestibular conditions. And they do find, actually, I think, I don't remember which study it was. But I think in the one they did, they were looking at people who were young and very healthy, and 25% of them still had at least a few of these dB, D PDR. symptoms. Sometimes the people with vestibular disorders, though, had more and more of them and at higher intensity levels for so. So but what you're getting at here, I think, is really important to think about that, again, this is a natural normal response of the nervous system. It's a matter of degree. And that's where the agency component comes in, Kimberly, that you were talking about earlier, the agency component comes in knowing that it's your stress response system that's actually creating this sensation, even though it's of course, it may be driven by a sensory mismatch, your vestibular system not working right. And we have something to do with our stress response system we can do, we can still do something about that.

Cynthia Ryan  

Wow. Melinda, weren't you tell us what are the things that you do? When you're in that situation? What little tools tips tricks? Do you have to get yourself through a situation where you're feeling overwhelmed?

Sure. Well, even to this day, it's a work in progress, you know, and anxious to hear Dr. Jung, just what, you know, what you're coaching your patients for, uh, hey, I'm

Kimberly Warner - Unfixed Media  

so

but, um, some of my tricks over the course of years, one of them, you know, is just knowing it's going to happen. And not being too surprised when it does. So. So that has helped me maybe helped my freeze response, where, you know, I just know it, there's going to be some surprising visual over stimulating occurrences, if I choose to be out there at all other than the safety of familiar environment. And it's going to add I you know, it's going to be uncomfortable, I'm going to have to go through my steps of Okay, time to slow down, focus, get my eyes on target. And kind of breathe through it, and this too, shall end. So that's been one kind of general general coping mechanism to get me out into the world and not just feel like I can't do this. That is

Kimberly Warner - Unfixed Media  

such a healthy approach Melinda, I just I have to underline it because I feel like when we're done Talking about especially nervous system response and anxiety, I think when and then we add coping into that techniques, and I'm speaking for myself can sometimes actually make it worse because you're still trying to fix the problem. And whenever we're trying to fix the problem, our brains are going, Ah, I'm scared. So I said, You tell yourself, it's going to be uncomfortable. It's yeah, yeah, and that only thing that ever worked for me, I did EMDR I did brainspotting I did all the body scanning and the breathing and everything made it worse for me. So I love what you just shared, thank you.

And, um, I suppose in situations where it has been more acute, like, you know, okay, I don't know, if I can do this one, you know, I do have a few little techniques that I try to pull in, sometimes they work, sometimes they don't. Instead of, I focus on my feet, I focus on feeling trying to zero in and feel my feet hit the ground. And, you know, I know enough about neurology to know, okay, so I'm paying attention to all the input coming in through my feet, all my joints, all my internet's going into my brain, and that's what I'm focusing on. In this moment, I still feel dizzy, it's up there. But instead of all my attention up in my head, at at the cost of disconnecting from the rest of my body, that can help tame down an immediate situation. To shift my focus, and, and I think it helps a little bit with the anxiety, you know, it just kinda has helped move me out of my head a little bit into keeping my focus on how what I'm feeling in my body. So that's kind of a circumstantial thing that I'll do or if I'm going for a walk in the afternoon, and I know, I'm just going to be dizzy, the whole walk. I will spend time just focusing on my feet, you know, kind of like, what am I feeling? You know, and, and letting the rest do its thing? You know, whatever that is.

Cynthia Ryan  

The grounding, the grounding that you're talking about earlier? Yeah. Yeah, it's part of that out. Yeah. Dr. Yo, I know you have a whole curriculum,

if so many options. Gosh, we

Cynthia Ryan  

just can you share a few things that someone can do right away? Yes, they

are experience? Yes, I just have to also just point out what Melinda described, those are such good tools. And in particular, I want to spotlight just what you did, Kimberly, the, the, what I would call outcome independence. So doing the thing that's good for you. And then just like breathing, hey, I'm safe. Like, this is just my brain reacting to something. It's not dangerous. It feels not great, but it's just my brain reacting. And I'm going to keep going. I'm gonna keep going. What I might add to that, again, this is a, this is a big ask. Okay. So I know, depending on where you're at with your symptoms, it may feel impossible to do this. But remember, you're the problem here is your stress response system, even when it's vestibular is the problem is your stress response system taking things too far. So what is like the opposite of your stress response system? Joy, connection, joy and connection. So lots of options here. I love self compassion practices, where you're not just saying I'm safe. I'm safe. But like actually, that doesn't usually work very well. But where you're really and I feel like practicing this, outside of when you're having the experience itself can be really helpful but really, really loving on yourself. Like talking to yourself the way you would to a scared dog. Or a scared cat. We had a discussion about cats before I going live. So I know we have some cat lovers here. But just the way you would talk to a scared animal speaking to yourself with that much love and compassion and that that turns that stress response dial down. Joy, humor, humor like actually laughing at how ridiculous the Centrum is because it is ridiculous. Like, I cannot believe you're walking around with a fishbowl as a head. That's just insane. So you can just you can I know and again, I'm not being flippant about it totally and awful. All these symptoms are but, but if you if you can visualize yourself as a cartoon character with a little fish like swimming around in the fishbowl, and it makes you kind of chuckle. That is an absolute absence of fear, that also brings down the stress responses. So those are things you can do right away, adding exactly on to what Melinda was already saying. I think another important thing to think about, and this, so those are symptom response, symptom response strategies. But I think that we really don't want to ignore the fact that you are a whole person. And you are not just your symptoms, you aren't just your vestibular system, all the other stuff, the context of your life matters here, I often use a metaphor of the stress bucket. So all the stressful things in your life are going into this big bucket. And, yeah, your symptoms may be caused by your vestibular system sending weird information to your stress response system and things going into overdrive. But that's going to be less likely to happen when your stress response system isn't already overloaded. So if you are already stressed out by a lot of other things, and hang on, I promise, I'm not going to tell you to just live a stress free life, that's not possible. But when you're when you have like a lot of this background tension already going on, your stress response system is going to be like, Okay, where's the red button, I'm ready to press the red button and the second vestibular signal comes in, that doesn't make sense. So it's going to, it's going to hit that button. So you want to you want your stress response system to to get the hand away from the button, want to put the button down. So stress is a fact of life. But research is very clear that the way that you interpret the situations that you're in, in your everyday life determines how your stress response system behaves. So I think I could probably talk for three hours about this, do not worry, I will not do that here. But lots of different ways to do this. Probably the underlying principle, again, comes back to self compassion, when you're when you are beating yourself up over having symptoms, when you're beating yourself up over not achieving whatever it is that you whatever bar you set for yourself, when you when you treat yourself like you're only the product of your doing, like you're only as good as the things that you can achieve, then your brain, I mean, you are ready to press that red button at all times. That puts you under a tremendous amount of stress. So I think ultimately, if I had to boil down about 75% of the things that I work on with people, it would be making them be nicer to themselves, teaching them how to be nicer to themselves to the stress response system calms down. Does that make sense? Does that help?

Kimberly Warner - Unfixed Media  

Absolutely. It's such an essential work that you're doing Dr. Yo, and I feel like I love that this conversation gets to the source. You know, we and not to dismiss the tools. Of course, I do feel like I think sometimes the tools end up masking over the source, which is a conversation that probably for all of us, the vestibular community needs to have. So thank you, for your valuable

thank you for being willing to listen, because I know if you if you heard me say this without the context that all of us laid here, you might think I'm saying, Oh, you're just learning and you're just anxious, stop being anxious and stop being stressed. It's the could not be further from the truth. Sure. Right. But let's, I mean, this is the biology we have let's work with it instead of against it. That's, that's my philosophy. Yeah.

And going through this experience, you know, it. You know, I think any one of us who have had to deal with a visible vestibular disorder, you know, it points to other aspects of our personality that we need to contend with. As you say, some of us, our whole lives have set the bar so high, that it's it has really nothing to do with our vestibular system, it has to do with what, you know, our belief system for, you know, many, many years and family. So sometimes it leads us to have to deal in deeper realms of, you know, letting things go that we thought were so important. And redefining our belief system in certain ways about ourselves, you know,

yeah, and not in the small way. And I think that's what really scares people. So if you're out there listening and you're new to this, and you're terrified, we're not saying well, guess you're just gonna have to sit around doing nothing and you can't do anything that you love anymore and go have a really awesome All life is the opposite. When people step into this i, i My experience is that they feel they feel empowered in ways that they didn't before they, their priorities shift in ways that are deeply meaningful and fulfilling. And they don't. They're, they become truer versions of themselves. It's not at all if a limiting feeling like I have this, this feeling like I can't be who I am they feel more like who they are without some of those pressures on themselves. Yeah. Yeah. And for,

Cynthia Ryan  

for everyone out there, who is who has felt these, these symptoms, dissociation derealization, or, you know, any vestibular system that makes you feel like, You're crazy. You're the only one out there, there is support for you. There are other people who feel like you do. And you can find them. Through the Vestibular Disorders Association, through fee to support groups, through our online communities, there are a lot of, you know, Zoom calls, Zoom support groups, and Facebook groups where you can find people just that validation, that you're not the only one who is going through this can really help to bring your stress level down. Bring that and help to sue that fight or flight response. Yeah,

yes. And this is neuroscience, this isn't, oh, we're just gonna like pat you on the back and help you feel better this, this will actually reduce symptoms, it will actually reduce symptoms when your fight or flight system is calmed.

Cynthia Ryan  

This this is such a huge topic, we will have to break it up because I know that we could go on and on about this. So let's talk about let's let's plan on a part two. We'll talk about this again, another time. Thank you so much, Melinda. Dr. Yeoh, for sharing your tips. Yeah. It's

such a pleasure to to be here. Thank you and Melinda, so great to meet you.

All look forward. I look forward to looking at your site. Absolutely.

Kimberly Warner - Unfixed Media  

Oh, it's such a wealth of it's a hug. It felt like a hug. But it is it's truly like somebody understands. So it's test we

Cynthia Ryan  

will include the link to your site in the in our in our instructions and our comments. And thank you everyone for joining us again for another episode of our ICU podcast. 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