LRL 2022 Transcript: What is Vestibular

This is a transcript from the 2022 Life Rebalanced Live (LRL) Virtual Conference on the topic of “What is Vestibular”. Learn more about this annual conference at


Dr. Danielle Tolman, PT  00:02

Good morning and welcome! Thank you for joining the Vestibular Disorders Association for our second annual virtual conference: Life Rebalanced Live. I’m Dr. Danielle Tolman and I’ll be your host alongside my partner, Dr. Abbie Ross. We are vestibular physical therapists with Balancing Act Rehab, members of VeDA’s Board of Directors, and self proclaimed vestibulo-holics.


Dr. Abbie Ross, PT, NCS  00:24

That’s right. And we are so excited to bring you an all-star lineup of expert speakers on the vestibular system, as well as a group of patients that we’ll be hearing their stories a bit later. We’d like to thank VeDA’s donors, VeDA staff members, and VeDA’s volunteers for their countless, countless hours and efforts put into putting on this conference. With their contributions, we’re able to present this live conference to you at no cost to our attendees. If you do wish to have access to the presentations after the live event, we will have them available for purchase. 


Dr. Danielle Tolman, PT  01:01

Before we get started, let’s give a shout out to our event sponsors. First we’d like to thank our gold level sponsor, the James D. and Linda B. Hainlen Discovery Fund, and the University of Minnesota Department of Otolaryngology. Jim Hainlen was the inspiration for this conference, having hosted his own in-person conference for patients with vestibular dysfunction in 2008 and 2019. We appreciate his continued support, and we’d like to thank our silver level sponsors, Otonomy and electroCore, which you’ll hear more from during our week sessions.


Dr. Abbie Ross, PT, NCS  01:33

That’s right. So our topic for today is: “What is Vestibular?”. The term vestibular, and even vertigo, can be very foreign, not only to people without vestibular dysfunction, but also to people with vestibular symptoms. So we’d like to open up the 2022 live Life Rebalanced live virtual conference with the topic and an overview of what the vestibular symptom is, what the vestibular system is, what it does in our body to help us function on a daily basis, and what kind of causes can contribute to vestibular dysfunction. The goal of today is to better equip patients with an understanding of why they might experience certain symptoms, how those symptoms can impact their everyday life, and how the system and symptoms can improve with targeted intervention. 


Dr. Danielle Tolman, PT  02:23

So without further ado, we’d like to introduce our first speaker, Dr. Richard Clendaniel. Dr. Clendaniel is a clinical researcher, educator, clinician and mentor and the Doctor of Physical Therapy Program at Duke University. His training and scientific practice have made him a recognized expert in the rehabilitation of individuals with vestibular disorders. Dr. Clendaniel, thank you so much for joining us today. Before we get into discussing all things vestibular, would you just take a moment to share a bit of your background with our audience as well as what got you into this vestibular world to begin with?


Dr. Richard Clendaniel, PT, PhD  02:56

Sure, thanks for asking me to be here. It’s a pleasure to join the conference. I got here in a roundabout way. I started when I finished PT school, I did typical musculoskeletal outpatient PT, treating people with neck pain, back pain, etc. After about five years, I was looking for a little bit of a change and decided to go back and pursue a PhD. And I decided to look in… get a PhD in neuroscience because I always felt that there was a neural component to the musculoskeletal disorders they were treating that was wasn’t being addressed. And, for a number of different reasons, I ended up studying how the nervous system controls eye movements, simply as a model system for understanding neural control of movement. And it’s fine, during I was doing my PhD, one of the postdocs in the lab that said, “you know, it’s too bad you can’t, you know, do some PT for this.” It’s like, “Nah, that’s never gonna happen.” And then I ended up doing a postdoctoral fellowship with Dr. Susan Herman at Johns Hopkins. And Dr. Herman is one of the founding individuals in the in the realm of vestibular rehab. And lo and behold, I end up doing PT for eye movements, plus additional things, but that’s how I got into it.


Dr. Abbie Ross, PT, NCS  04:20

Very good. Well, thank you, again, so much for being here this morning, or afternoon or evening, depending on where you’re tuned in from. Now, we alluded to this a little bit earlier, but we would venture to guess that most people who develop vestibular dysfunction, really don’t think twice about their vestibular system before having symptoms, or perhaps they’ve never even heard of their vestibular system. So broadly speaking, what is your vestibular system composed of?


Dr. Richard Clendaniel, PT, PhD  04:46

So it’s part of your inner ear, along with the hearing portion in your ear, the cochlea, and it’s basically simply designed to sense head movements and all kinds of directions. We can dive into that a little bit more if you want to. So, you’re gonna put up the first slide. Yeah, let’s do it. Okay. So this is a diagram of your entire inner ear, the spiral shape structure is the cochlea. The part looks like a snail shell is the cochlea, involved in the hearing process. And then the part to the right of that, those gold colored canals and the little gray area there in the central part is your vestibular system. There are what are called three; or three semicircular canals:  number one, two and three there. And they are simply arranged and designed so that they will sense any type of turning movement of your head whether you’re turning your head, side to side, nodding your head up and down, going at a diagonal movement, any type of rotational movement will stimulate those semicircular canals. And then just in the gray part, that’s, that’s joined next to those canals are two structures represented by the little blue oval and the red oval. These are referred to as the, what are called the otolith organs. And they are simply designed to sense movements and straight lines. So forward and back, side to side, up and down, and any combination thereof. And since gravity will act on these structures, so that your your vestibular system will sense gravity and your head orientation in space.


Dr. Danielle Tolman, PT  06:39

So those little organs, the blue oval and the red oval, they’ll sense things like speeding up or slowing down in a car, or going up and down in an elevator, where as the yellow semicircular canals, they’ll detect whether or not your head is moving in any sort of direction, and then communicate to your eyes. Is that right?


Dr. Richard Clendaniel, PT, PhD  07:00

Yeah, so the nerves go from here into your brainstem, and then they go lots of different places. But there’s a very basic reflex, called the vestibulo-ocular reflex, or people abbreviate it VOR. That’s simply designed to allow you to see clearly when you move around. S o for example, when you turn your head to the right, the vestibulo-ocular reflex will automatically make your head and your eyes move to the left, and when they move, they should be moving at the same speed that your head is moving. So that when you’re walking, moving, doing whatever, you can keep your eyes on a target and see clearly.


Dr. Abbie Ross, PT, NCS  07:41

Yeah, I’ll just demonstrate this too: If I’m looking straight at my camera here, and I want my eyes to remain on the camera, when I turned my head to the right, my eyes automatically just move to the left or other way, up, down, no matter what direction.


Dr. Richard Clendaniel, PT, PhD  07:56

Yeah. It is a reflex. No, you don’t think about it; just happens automatically.


Dr. Abbie Ross, PT, NCS  08:03

Yeah. So you touched on this a little bit, but can you describe how then your peripheral vestibular system, those apparatuses we just had, or the apparatus we just had on the screen, how does that then work together with your brain?


Dr. Richard Clendaniel, PT, PhD  08:17

Oh, good question. So all those signals that are coming in from your inner ear get sent up to different structures in your brain. Basically the brain is looking at the input from your inner ear, or your vestibular system, input from your visual system to tell you how you’re moving, and input from somatosensory system. So sensation from your feet, or whatever part of your body is touching a stable surface. It pulls all three signals together to figure out how you’re moving, which way you’re moving, how quickly you’re moving, things like that.


Dr. Danielle Tolman, PT  08:55

So if there’s any sort of error in any one of the systems, we can start to see some symptoms, or difficulties, with maintaining balance and vision, and having maybe some symptoms of dizziness.


Dr. Richard Clendaniel, PT, PhD  09:09

Yeah. So again, the inner ear is going to control some eye movements and will also help control your balance, and basically anytime there’s a defect or mis– not even a defect, but there’s a mismatch between what your visual system is telling your brain and what your vestibular system is telling your brain, you can feel dizzy, lightheaded, off balance, things like that. 


Dr. Abbie Ross, PT, NCS  09:36

So can you give us an example of sort of an everyday situation that you may experience that mismatch in?


Dr. Richard Clendaniel, PT, PhD  09:44

Yeah, so there are a couple couple different scenarios we can think about. One is if we think about your your visual system, not matching up with what your vestibular system is telling it. If you’ve ever been stopped.. if you’ve been in your car and you have ever stopped at a stoplight, and there’s, especially with a truck or a bus next to you, that starts to move forward, and you get this sensation that you’re rolling backwards. You slam on your brakes, even though you’re not moving. Your visual system is telling your brain when sees all this… this big portion of visual field moving, that your visual system says, “Hey, I’m rolling backwards.” And so that’s why you slam on the brakes, even though you’re not moving. And then you have a stupid system says, “Not really. It’s okay.” Kind of the flip side of that also in a car is for people who get carsick. The reason that riding in the backseat is worse than writing in the front seat or trying to read while you’re in the car is worse, or a symptom provoking. In those cases, your visual system is basically telling you that you’re not moving. So if you’re sitting in the backseat, and just looking straight ahead, basically, what you see is the interior of the car, and visual systems says, “Okay, we’re not moving.” And the vestibular system says, “Oh, yes, we are.” And is that conflict between the two that can give rise to the symptoms of dizziness, nausea, lightheaded, sensations, things like that.


Dr. Danielle Tolman, PT  11:15

And that can vary from person to person, right? Because there are people out there that can read a novel in the backseat and have no problem. And there are people that can’t even look at a roller coaster without feeling nauseated. So that can vary, right? Pretty greatly.


Dr. Richard Clendaniel, PT, PhD  11:29

Yeah, absolutely. I mean, some people are susceptible to motion sickness, other people are not as susceptible to it. And, to my knowledge, we don’t know why at this point. There are some some theories about things. But yeah, some people it’s not a problem and other people it is. Just like my two daughters, one can read in the backseat, the other one? Not so well.


Dr. Abbie Ross, PT, NCS  11:51

Some are luckier than others in that sense, for sure. You touched on a few symptoms that you might experience, especially in a sensory mismatch, but just broadly speaking, if you have a dysfunction of your vestibular system, what types of symptoms may you experience?


Dr. Richard Clendaniel, PT, PhD  12:08

A whole host of symptoms, so you can experience vertigo. Now vertigo, is a term that’s used a lot and oftentimes is used inappropriately. So vertigo is defined as technically an illusory sense of motion. So basically, if you feel like you’re moving when you’re not, that’s vertigo. It’s typically a spinning sensation. It can be horizontal, it can be vertical, but it doesn’t have to be a spinning sensation. If you’re sitting perfectly still, and you feel like you’re bouncing up and down and moving side to side. That’s typically vertigo. People complain of imbalance. So difficulty moving around standing, especially in the dark and walking on uneven surfaces or if they’re moving their head around. And then some folks will complain of difficulty seeing clearly when they’re moving around, which is what we call Oscillopsia. So basically, if you’re walking around and you sit, your system is not working, everything starts bouncing up and down. And so you can’t see clearly. So that may be a symptom that you experience. And then the other symptoms are a little harder to describe and people talk about feeling lightheaded, heavy headed feel like they have a cotton in their head. Just a general sense of disorientation not feeling quite right feeling off balance, head motion can make them feel worse, but the other than the clear terms of vertigo and imbalance and things like that. The rest of its kind of hazy or fuzzy.


Dr. Danielle Tolman, PT  13:46

Very subjective type of complaints. I mean, I’ve heard my brain is floating or it’s knocking around in my head or there’s a lot of things that patients come up with, which are good descriptors, but this kind of brings me to a question that we actually had in our q&a before the session started. And it’s kind of differentiating between vertigo and dizziness now, you know, dizziness, seems like it encompasses so much. And you had said that vertigo was more of that all sensation of movement when there is no movement? What else could fall under that umbrella of dizziness and how do they all differ from the term dizzy?


Dr. Richard Clendaniel, PT, PhD  14:22

Yeah, so dizziness is just a big umbrella term that people… it’ll catch kind of everything other than vertigo and imbalance. And just because you’re dizzy doesn’t mean it’s coming from your inner ear. There are medications that can make you dizzy. Blood pressure changes can make you feel dizzy or lightheaded. So some people have to if they’ve been squatting for a while, if they’ve bent over for a while they stand up and they feel lightheaded or dizzy. That’s, that could be their inner ear but typically it’s more related to blood pressure changes. Yeah, it’s just…


Dr. Danielle Tolman, PT  15:02

It’s hard. It’s really hard.


Dr. Richard Clendaniel, PT, PhD  15:03

Yeah, it is. I mean, it’s just yeah, patients come in and they describe their symptoms. And that could be your inner ear or maybe not. So the one thing is if it is your inner ear that’s causing the problems, or the inner system, so either the peripheral vestibular system or the central projections of it. Generally, moving around is going to make your symptoms worse, because since your inner ear senses movements, if you stimulate it, and there’s something amiss with your system, then that’s going to make your symptoms feel worse.


Dr. Abbie Ross, PT, NCS  15:42

Right. And often when you see a patient and they say, I’m dizzy, the clinician is always asking, “well describe dizzy,” because Dizzy means something different for everyone. All those symptoms that you just talked about, someone could label as dizzy or dizziness. Now, you also, you also mentioned Oscillopsia. So to better just or better give you a picture of what that is. Think about kind of a bad home video where the cameras moving up and down that would be similar to what you would experience if you were having Oscillopsia. And that kind of leads us into our next question. What if you have bilateral vestibular dysfunction? What if both apparatuses are affected?


Dr. Richard Clendaniel, PT, PhD  16:29

So a couple things with, with the bilateral weakness or involvement of the inner ear on both sides, you sometimes patients will… So the main thing people will talk about who have bilateral vestibular deficits is a sense of imbalance. And most noticeable when they’re walking, but even just standing they feel off balance or quote unquote, dizzy. If they move their head around, it makes that worse, if they put them in the dark, it makes them worse, because they can’t use vision for balance. If they’re on an uneven surface that’ll make their symptoms worse or their balance works. Generally, when they’re sitting still, or they’re sitting down or lying down, they’re typically pretty much asymptomatic. So generally speaking, if you have a bilateral steeper problem, you typically do not have vertigo, because both sides have or damaged. There are exceptions to that. So you can have vertigo associated with bilateral vestibular hypofunction or bilateral vestibular damage. The other thing people will talk about, although it’s usually something we kind of tease out, and the initial evaluation of patient just talking to the patient is this sense of Oscillopsia or decreased visual acuity when they’re moving around. Most patients don’t come and say they have Oscillopsia. Every once a while they do but it’s about usual usually we’re asking folks is when you’re walking around when you’re riding in a car, can you see clearly or do you see better when you’re stationary versus when you’re moving? And if they say they see better when they’re stationary it raises the possibility of Oscillopsia to about any constant bilateral vestibular problems.


Dr. Danielle Tolman, PT  18:22

It seems like patient’s symptoms can really lead us to an idea of what might be going on with the patient and causing their symptoms. So there is a big difference between how somebody might feel if they have a peripheral vestibular issue versus a central vestibular issue. Could you talk a little bit about the difference between peripheral and central symptoms and issues? I get it’s hard because there’s a lot.


Dr. Richard Clendaniel, PT, PhD  18:50

Yeah and there’s a lot of overlap. And so generally vertigo, this abnormal sense of movement is usually associated more with a peripheral vestibular problem than with a central vestibular problem. However, there are cases like, if you have a stroke affecting your brainstem or your cerebellum, you can definitely have vertigo as a result of that. Generally, folks who have central problems have more of a sense of motion sensitivity, more impaired balance. And they can also have an altered sense of what’s upright or what’s vertical. So sometimes these patients will walk into the clinic tilted over to one side, because their vestibular system or there’s the central system is telling us that is vertical. And I basically ignore all the visual cues that tell them that no, this is vertical. But yeah, there’s a lot of overlap between the two.


Dr. Abbie Ross, PT, NCS  20:07

And when we think about prognosis of central versus peripheral, can you touch on that a bit?


Dr. Richard Clendaniel, PT, PhD  20:14

Yeah. So on average, folks who have a central vestibular problem will take longer to recover, and will not do as well as somebody who has a relatively simple peripheral problem like a unilateral loss. But having said that, folks whose central disorders, the… we see some folks with central vestibular disorders who do remarkably well, and they go back to doing all their normal activities with little to no symptoms. And that was the other folks who have a similar diagnosis and they don’t get better because of evolvement of some of the compensatory structures. So when you look at those two extremes, you can take the average or somewhere in the middle.


Dr. Danielle Tolman, PT  21:03

I think it’s, that’s a really good testament to say that vestibular patients are all individual and different from person to person. It was just within their experience, the presentation how they’re going to rehab. So you know, every single person, when  they get care it’s typically very individualized to that person, what they’re feeling and what they want to get back to doing as far as quality of life is concerned. We have a question in the q&a, concerning central and peripheral issues. Can a peripheral issue cause a central issue?


Dr. Richard Clendaniel, PT, PhD  21:40

Can a peripheral issue cause a central issue? There, there are…


Dr. Danielle Tolman, PT  21:55

There’s some overlap.


Dr. Richard Clendaniel, PT, PhD  21:57

Part of it depends on how we’re defining a central issue, but I’ll go… I’ll talk about both things I was thinking about. So there are it’s possible that you can have an infarct or blockage the artery that supplies blood to the inner ear, but it also supplies blood to regions of the brainstem, the cerebellum. So in that case, you can get mixed peripheral and central signs. But it’s not that the peripheral problem is causing a central problem. The only other thing I can think about in terms of a peripheral problem causing a central problem is this idea of which we’ll probably talk about later during the week. And this idea of persistent postural perceptual dizziness or PPPD, which can arise from a variety of different causes some of which are peripheral in nature. So somebody may have had Benign Paroxysmal Positional Vertigo or vestibular neuritis, and they may have compensated for that. But they may have continued symptoms, emotion sensitivity, in balance, or hypersensitivity to all different types of things that make them feel dizzy or off balance, when in fact, there’s really not a peripheral common cause of that at this point. So it’s kind of a failure of central compensation, if you will. That’s not doing PPPD justice, but there’s kind of that that relationship.


Dr. Abbie Ross, PT, NCS  23:40

So let’s define a little bit more than what vestibular diagnoses would be, would be considered to be central versus peripheral.


Dr. Richard Clendaniel, PT, PhD  23:51

Okay, so peripheral are the… it’s easier to talk about peripheral and then everything else is central probably. Probably the most common thing we see in terms of a specific diagnosis for peripheral problem is benign paroxysmal positional vertigo or BPPV. You can have unilateral or hypo function that can come about from either an infarct or blockage of the blood flow to the inner ear or for some as called referred to as vestibular neuritis. So inflammation of the nerve that goes to the inner ear or comes from the inner ear. You’re gonna have five you’re gonna have labyrinthitis which affects the vestibular system and the auditory system at the same time, you know, bilateral vestibular hypo function. Other peripheral causes would be Menieres disease, fistulas, you can have a type of bone fractures that cause damage to the performance of your system. You can have some autoimmune disorders that can cause damage to the peripheral vestibular system. I hope I’m not forgetting any.


Dr. Danielle Tolman, PT  25:00

That’s a pretty good list. 


Dr. Richard Clendaniel, PT, PhD  25:02

That’s most of them. When we think about central causes stroke can certainly cause it. And typically it’s going to be a stroke that affects the brain stem of the cerebellum. You can have multiple sclerosis. If the MS affects the vestibular nerve that can give rise to symptoms of dizziness. Head trauma, either mild head trauma like a concussion or more severe head trauma can cause central disorders. So cerebellar degeneration: you can cerebellar degeneration can make you dizzy or off balance. We talked about PPPD. Migraine can cause vertigo and dizziness. And that can either be due to peripheral and or central causes. Those are the big ones that come to mind.


Dr. Abbie Ross, PT, NCS  26:08

And then can you experience peripheral and central dysfunction simultaneously?


Dr. Richard Clendaniel, PT, PhD  26:15

You can. As I mentioned earlier, you can have a an infarct or blockage of the blood supply to your inner ear as well as brainstem and cerebellum. That’ll give you both peripheral signs and central signs. You can have a central problem, a cerebellar disease or something along those lines and but then also develop BPPV. So you can have both.


Dr. Danielle Tolman, PT  26:41

Now let’s talk a little bit more about the structure there. I’m going to pull up that slide that you showed us earlier. And we can see that the vestibular apparatus that things are highlighted in beautiful colors is connected to the cochlea, which is responsible for hearing. Could you describe when we might see some hearing involvement in our symptoms? And when we probably wouldn’t?


Dr. Richard Clendaniel, PT, PhD  27:08

Yeah, so it all depends on what structures are affected. The nerve that runs… the vestibular system runs right next to the nerve or in conjunction with the nerve that runs in the cochlea. So if the entire nerve is involved, you can have both a hearing loss as well as the stator problems. They share common blood supply. So depending on if there’s a blockage in the blood supply that can affect both hearing and your vestibular system. The trauma, if there’s a head trauma that causes temporal bone fracture that goes through the inner ear space, those structures are housed in the skull, that would affect both. And then there’s some disorders like Meniere’s Disease and some fistulas can cause both auditory and vestibular symptoms.


Dr. Danielle Tolman, PT  28:07

So there’s times that you can have hearing loss or symptoms with hearing that are not related to the vestibular apparatus at all. There are some times that you can have hearing symptoms associated with vestibular dysfunction. And there are times where you can just have vestibular dysfunction without any sort of hearing issues at all.


Dr. Richard Clendaniel, PT, PhD  28:27

Absolutely. So a lot of times when patients come in for initial evaluation, either with a therapist or if their initial evaluation is with an otolaryngologist or a neurologist, there typically will be questions about “do you have associated hearing loss?” And they may even order a hearing test or do a quick screen of your auditory system just as we rule out, or identify potential other factors that may be contributing to the problem?


Dr. Abbie Ross, PT, NCS  29:01

Yeah, so we described a bunch of symptoms that correlate with both peripheral and central dysfunction. And we described what the system does, right in terms of how what role it plays in our everyday life in terms of detecting movement, that can we get a little bit more into what types of things do patients describe in terms of function that is impaired when they have a vestibular issue?


Dr. Richard Clendaniel, PT, PhD  29:35

Basically, anything that involves movement is oftentimes problematic. But some of the bigger things we see is symptom provocation during movements, especially if they’re bigger and faster movements so that may limit their activities. Their balances typically affected. Usually if they’re just walking and it’s a well lit environment, a level floor, they don’t have to do a whole lot of head movement, they’re okay. But put them in the dark and their balance is typically worse. Because if there’s a problem with their vestibular system, they, the central nervous system typically reverts to using visual cues for balance. And so if you put them in the dark, you take your visual cues their balances worse. Similarly, if you have them walk on an uneven surface, like out in the yard or an incline, they’re not getting the stable input from your feet that can make them feel off balance. Some folks, end up with more of a balanced deficit than others, so they may be walking with an assistive device like a cane or a walker. But again, it’s highly individualized in terms of how they present.


Dr. Danielle Tolman, PT  31:01

Now the vision is… people’s vision can be greatly tied to their symptoms and how they feel. But can vision issues also cause people to feel more off balance? Like if somebody uses mono vision further contacts? Or they have astigmatism or anything along those lines? Can visual issues also pose a problem for our balances system and our balance?


Dr. Richard Clendaniel, PT, PhD  31:26

Yeah, yes. To some degree, yes. Right. So we use, again, we use three senses for balance in our orientation space, use our eyes, our visual system, our inner ear of the vestibular system, and sensation from our feet, or whatever part of our body is touching a stable surface. The brain is really adept at being able to switch from one to the other. So if all of a sudden you’re in a dark, you typically are okay, assuming you have a normal vestibular function. Or you can walk outside of the yard and typically not have any problems, because the brain will just use visual cues, or vestibular cues for balance. And even you can, if you have normal inner ear function, you can walk on the beach at night without losing your balance. Now, you it’s you’d maybe walk a bit more slowly, you may stagger a little bit, but you can still do it. But there are folks who, for various reasons become visually dependent for balance and orientation. And then those folks will typically have increased imbalance in the dark, they’re bothered by movements in a visual environment. They have difficulty walking through complex visual environments, like grocery stores, crowds, things like that. Yeah, for whatever reason, in these folks the brain is just relying on their visual system more than the vestibular system or somatosensory system.


Dr. Danielle Tolman, PT  33:04

And people who have become very visually dependent like that, is it possible for them to have a feeling of going back to normal or is that going to be a compensation that they have to deal with for the rest of their lives?


Dr. Richard Clendaniel, PT, PhD  33:15

Assuming they have remaining vestibular function and good somatosensory function, they should be able to compensate back to being able to switch back and forth between three different sensory cues to maintain balance. And even if they have something like a unilateral severe loss and they can visually dependent, which is typically what we see clinically, they should be able to through rehab or time or combination of the two be able to go back to the point that their balance is fine in the dark. They’re not bothered by walking through busy visual environments, so they can go back to using the exterior system appropriately for balance.


Dr. Abbie Ross, PT, NCS  33:59

So when we describe all these symptoms and different types of impairments when it comes to function, all of these things are invisible, really to another person’s eye. Can you get into that a little bit? What do we mean when we say that vestibular dysfunction is an invisible illness?


Dr. Richard Clendaniel, PT, PhD  34:19

Yeah, you’re not wearing a cast. You’re not, you know, there’s no… if you look at somebody who has a vestibular problem for the most part, they look normal. There’s no outward signs that there’s an issue and actually, in some people, especially if they have a bilateral vestibular loss, or if it’s early on in their unilateral vestibular loss or early on in recovery process, when they walk around, sometimes they’ll stagger. And so a concern that these folks have and it’s a reasonable concern is that when they’re staggering they’re afraid, or they’re concerned that people may think they’re intoxicated. Because again, there’s no outward sign that this person has a problem.


Dr. Abbie Ross, PT, NCS  35:12

So with that being said, what words of advice do you have for someone who is trying to describe their issue to an employer or a family member or a friend? Because these are invisible things, how can they describe what’s going on with their vestibular system?


Dr. Richard Clendaniel, PT, PhD  35:31

Well, if they have a diagnosis, they can always give the diagnosis to employers, family, friends, etc. And just simply describe that because of their inner ear problem, or their, let’s just say the vestibular system problem because it could be peripheral, or it could be central. Their balance is affected under certain conditions, head movements might make them feel worse, and they may cause an increased imbalance. I mean, we see it in a clinic, I’m sure you see in the clinic a lot. Patients will oftentimes come in wanting a diagnosis. And sometimes it’s, it’s even invisible to us, if you will, and we don’t… we see folks, a number of folks, who are dizzy, that head movements make them feel worse, their balances worse than the dark side of kind of the whole complex things that you associate with a vestibular system problem. And yet, on a clinical evaluation on vestibular function testing, sometimes you just can’t find evidence of weakness in the inner ear, or a problem within the central pathways. So we don’t doubt that people have problems with sometimes they just don’t show up on testing.


Dr. Danielle Tolman, PT  36:57

That kind of leads us to a point this isn’t a system that we can image in and just get a picture of to figure out what’s going wrong with it. Is that right?


Dr. Richard Clendaniel, PT, PhD  37:08

For the most part, yeah, I mean, you can see the vestibular system on scans. You can pull up that other slide if you want. So I don’t have control of a pointer, but maybe you guys do. So this is a view of your brain. It’s actually in my brain. And kind of in the middle of the picture, you can see a couple little circles. Those are two of the semicircular canals. So yeah, you can see it in there. But it’s tiny, right? If there are tumors growing on the nerve coming from vestibular system, we can see those on MRI. If there’s some hole in the bone surrounding it, if we do if they do high resolution CT scans, they can see that, but short of that you really can’t image it. There’s some things that are evolving, that may improve our ability to see kind of detect what’s going on in the inner ear. But still, those are evolving.


Dr. Danielle Tolman, PT  38:21

And there’s different that can be performed to that look at inner ear function. Correct. But there, they can look at a whole host of different things. And there’s a whole host of test that maybe look at certain aspects of the vestibular apparatus and not others.


Dr. Richard Clendaniel, PT, PhD  38:36

I’m sorry, Danielle, I missed the first part of your question. You’re talking about the vestibular function tests.


Dr. Danielle Tolman, PT  38:40

Yeah. So just so the imaging, we can’t just take an image and see what’s going on with it unless there’s a structural issue, like you had mentioned tumors or missing bone. But then aside from that, we can look at function to the midst of the Oregon to try to get a better snapshot of what’s going on. But even sometimes they can be… our symptoms can be elusive of that just because we can’t test every single thing. Because we’re still working on that.


Dr. Richard Clendaniel, PT, PhD  39:04

Right. Yeah, there are clinical tests that we typically do to assess function. And there are a battery of laboratory tests that are done to assess function. And basically, what we try to do is you get all the data together and all the little pieces of the puzzle and try and put it together. And sometimes it’s a clearer picture. Sometimes it’s not so clear.


Dr. Abbie Ross, PT, NCS  39:28

I think we got a good feel for it on this scan in terms of the true size of the vestibular apparatus, but also can you pull up your… Yeah, there we go. Just to give our audience an idea on just how small the vestibular apparatus actually is. (Dr. Clendaniel holds up true-to-size inner ear model) Small but mighty.


Dr. Richard Clendaniel, PT, PhD  39:50

Yeah. So this is actually your vestibular apparatus plus the cochlea.


Dr. Danielle Tolman, PT  39:58

And that whole thing can pretty much fit on your thumbnail are about the size of a dime the whole apparatus, which is and that’s just the bony outside, there’s other layers to that, like where little canals or those little crystals might become displays and BPPV. Those are even smaller than what you’re seeing in that little model there itself.


Dr. Richard Clendaniel, PT, PhD  40:17

Yeah. So very tiny but very powerful.


Dr. Abbie Ross, PT, NCS  40:22

It can definitely impact your life, that’s for sure, as many of our attendees probably already know. And with that being said, let’s shift gears a little bit to answer some more questions from our audience. The first one that we have… we have answered some of them as we’ve gone. But this one in particular, is it possible to totally get rid of vestibular issues such as vestibular migraine? Or is it more of managing the symptoms for life?


Dr. Richard Clendaniel, PT, PhD  40:54

So we see folks who have a known unilateral severe loss and, through rehab, the expectation is that they go back to basically being asymptomatic and back to performing all their normal daily activities. And in talking with some folks, they’re like, “Yeah, I don’t have any symptoms whatsoever.” Some folks say, “I really don’t have any symptoms, I don’t have any limitations. If I turn real quickly towards the affected ear it takes the world a half second to catch up with me,” but it doesn’t limit them. Other disorders, like bilateral vestibular hypofunction, we expect that people get better, but they’ll probably always have some symptoms. So we use a combination of rehabilitation, recovery, and compensation, plus management. So we don’t really talk about recurrent BPPV, we put it into a period of remission, if you will. Vestibular migraine and PPPD, those become a bit more complex. Basically, with vestibular migraine, it’s a question of, can we control the migraine through medication, lifestyle changes, dietary control, things like that. If we can control the migraine, then the dizzy component to it should be minimized. Meniere’s disease can run its course or they can have surgery for it and get rid of the symptoms. But then oftentimes, they’re left with some other residual findings or residual symptoms of some dizziness and imbalance.


Dr. Danielle Tolman, PT  42:54

So … it depends on your diagnosis and how your treatment goes, how your body responds. You can go back to being asymptomatic and other times you might need to find ways to manage it. There’s a question here about multi canal bilateral BPPV. And that, again, BPPV is not necessarily something that’s cured, but something that’s managed just because of the rate of recurrence for those patients, they might pop up the need for canalith repositioning maneuvers. So in some aspects, people with this dysfunction might need to manage their symptoms, but there’s a lot of different ways they can manage successfully. And there are other times where people might fail to recover fully and go right back to their lives as they experienced it before.


Dr. Richard Clendaniel, PT, PhD  43:39

Yeah, I mean, the expectation is that when patients come into the clinic to see us with the sticker issues, is that we make them better and increase their function. Sometimes it depends on the diagnosis. We expect you to go back to everything you were doing beforehand, with minimal to no symptoms. Other folks are like yeah, we want to improve your function, get your back doing things you were doing beforehand. There may be some limitations to it, or you may still have some symptoms doing it. But the expectation is we can get you better with treatments of different sorts, whether it’s PT or medication or surgery or whatever.


Dr. Abbie Ross, PT, NCS  44:28

That’s what I was just going to talk a little bit about. You had listed some interventions specifically for vestibular migraine and certainly interventions vary depending on what we suspect the cause of symptoms to be. But common approaches to treatments are physical therapy, medication, some lifestyle modifications, dietary changes, in some cases, anything else you can think of.


Dr. Richard Clendaniel, PT, PhD  44:54

No, no, I mean, the usual approach is first of all identify … that it is not something else. And then looking at, yeah, diet, lifestyle, and medication is the usual way. And then if you still have residual symptoms therapy can play an adjunct. And the issue I’ve encountered in trying to treat folks with vestibular migraine who have motion provoked symptoms from motion sensitivity is that if the migraine is not under control, so they’re still having frequent migraines, we try to do exercises to decrease their sensitivity to the head movements, which typically is going to provoke some dizziness, which then typically triggers a migraine. So, my general go-to when somebody comes in with a vestibular migraine, they’re still having a lot of migraines is to counsel them about lifestyle and dietary changes, or dietary things to consider. And get them hooked up with a migraine specialist to try and see if we can bring the migraines under control. And then if they’re still dizzy afterwards, then come back for therapy.


Dr. Abbie Ross, PT, NCS  46:10

What about the psychological impacts of vestibular dysfunction? What do we tend to recommend in terms of managing the stress and anxiety that is often associated with these symptoms?


Dr. Richard Clendaniel, PT, PhD  46:23

For some, sometimes medications are indicated. For three PD, a lot of times their medications that are typically used are called SSRIs or SNRIs. People can have anxiety, as a result of their dizziness, they can have dizziness as a result of anxiety. So anxiety medications are sometimes indicated. Many become depressed because of the chronic symptoms. So there’s medical management for those aspects of dizziness. Counseling can be very beneficial for some individuals, either cognitive behavioral therapy or just straight, typical counseling sessions.


Dr. Danielle Tolman, PT  47:15

You brought up medications. And there’s a question in our q&a asking about if there are any medications that will prevent vestibular rehab from being effective. What’s your take on that?


Dr. Richard Clendaniel, PT, PhD  47:29

So for years and years and years, we said things like …. Antivert and Valium will inhibit the recovery process, and latest evidence suggests that they don’t, they won’t directly retard or inhibit the recovery or compensation process, they can have a secondary effect that can slow down the recovery process. So meclizine, which is a generic form of Antivert, is an antihistamine, and it can make you feel drowsy. And so if you take enough of it, it can actually make you feel lightheaded and dizzy. Think about taking a lot of cold medication. Sometimes when you do that you just feel a little bit off. But the other thing is, if you can take meclizine or Antivert you don’t want to get up and move. And the recovery from the rehabilitation from a deficit typically involves movement and you have to move, you have to make yourself a little dizzy, you have to provoke some symptoms for the brain to start learning how to reprocess the inputs appropriately. And so if you’re not moving as a side effect of the meclizine, that can indirectly slow down your recovery process, but it probably does not prevent it entirely.


Dr. Abbie Ross, PT, NCS  48:56

That’s a good point. Go ahead, Dani.


Dr. Danielle Tolman, PT  49:00

A question that kind of piggybacks off of this. It’s not really about medication, but more about the fatigue side of things. Could you explain why people with a similar dysfunction feel so fatigued? I’ve had patients say their eyes are tired or they have brain fog. Why does that happen?


Dr. Richard Clendaniel, PT, PhD  49:15

So keeping your balance and your orientation in space is typically a subconscious level activity, we don’t think about it. And the idea is that if you have a vestibular problem, and the inputs to the central nervous system are impaired, that you actually spend mental energy if you will, a mental effort to stay upright, keep your orientation in space, keep your balance. And so that mental effort requires energy and so that’s why we think people are fatigued towards the end of the day, and oftentimes feel worse.


Dr. Abbie Ross, PT, NCS  49:52

Yeah, let’s go back a moment to meclizine. So if a patient is undergoing therapy, and we want to get a good grasp on how appropriate an exercise is, is it okay for them to be on medication knowing that their symptoms may be suppressed? Or do we really want to see how they respond to something without the influence of medication?


Dr. Richard Clendaniel, PT, PhD  50:18

So generally, what we try to do is get the people to wean off medication that is for the acute onset of vertigo, but the long term use of it, it probably doesn’t do much in a way of alleviating symptoms. And as we said, it can actually kind of slow down your recovery process and can make you dizzy if you’re taking a lot of it. So generally, we’re trying to counsel people to wean off medication. A lot of physicians I work with, when patients come in with meds, they’re like, “Okay, stop it, or wean off of it.” So yeah, so it’s kind of a combination of the two. I’ve heard of clinics who will not start patients on a rehab process until they’ve stopped taking the medication. I think that’s a bit extreme. I think we can take medication, do your exercises, try to wean off the medication, keep doing your exercises, and go from there. It’s not like the mechanism is going to completely block your symptoms. 


Dr. Danielle Tolman, PT  51:40

I was just going to shift gears a little bit, because I know we’re running out of time. We’re getting close to our hour. I’m looking through our q&a. And there’s a lot of really good questions. I’m so sorry, if we’re not able to get to every single one of them for those of you who are watching, but there’s a couple that are popping up that I realized we should probably address. Other things that might affect the vestibular system such as pressure, altitude, the temporomandibular joint, what are some other things that might be external causes to dizziness?


Dr. Richard Clendaniel, PT, PhD  52:11

So you can have problems in your neck that give rise to symptoms of dizziness, called cervicogenic, dizziness. Typically this does not include vertigo, but just a more a sense of imbalance or lightheadedness. A lot of times severe pressure changes can cause problems. And if you have what’s called a fistula that can give rise to some symptoms. A lot of patients who have Meniere’s disease know that they’re symptomatic when there’s a cold front coming through with pressure changes or altitude changes. I’m not clear why that actually occurs. But we hear it frequently. As far as the TMJ is concerned, I don’t know how directly that’s affected. I think sometimes what happens is if you have an underlying vestibular disorder, you are going to feel worse when you’re stressed. That stress can be anything from neck pain, back pain, TMJ pain, emotional stress, job stress, lack of sleep, you know, any type of stress can make your symptoms worse. I’m not convinced TMJ actually makes you feel dizzy. That’s my bias on it.


Dr. Abbie Ross, PT, NCS  53:56

Another question from our attendees. What are the risk factors for peripheral or central disorders? It looks like we might be experiencing a bit of an issue with Dr. Clendaniel speeds so let’s just see if we get it back here. Give us a moment.


Dr. Danielle Tolman, PT  54:52

We appreciate you guys hanging out with us.


Dr. Abbie Ross, PT, NCS  55:29

One thing I did want to touch on are the polls that you all answered. Our first poll is, have you been diagnosed with a vestibular disorder? The majority of attendees have, there are some health care providers here, so 95 people out of 185 have had a specific diagnosis. 10 say they have symptoms, but no specific diagnosis. And then the majority of the others are actually healthcare providers. So we do have a mixed audience today. Let’s go back to that risk factors question. Dr. Clendaniel,


Dr. Richard Clendaniel, PT, PhD  56:17

Head trauma, obviously, for a variety of things. I guess if you have risk factors for stroke, then there’s a possibility of an infarct, or protecting brainstem or cerebellum. That’s about the only risk factors I can think of off the top of my head.


Dr. Abbie Ross, PT, NCS  56:54

How about family history for something like vestibular migraine?


Dr. Richard Clendaniel, PT, PhD  56:58

Yeah, good point. Migraines do run in families. So yeah, that would be a concern.


Dr. Danielle Tolman, PT  57:04

What about any cardiovascular risk factors for things like BPPV? Or osteoporosis?


Dr. Richard Clendaniel, PT, PhD  57:11

I don’t know about cardiovascular risk factors for BPPV. There’s some emerging literature that suggests that vitamin D deficiency might be related to recurrent BPPV. And vitamin D is associated with bone formation, osteoporosis, things like that.


Dr. Danielle Tolman, PT  57:34

That’s good to know. Is there any connection between your sinuses and your vestibular system? I get this question a lot in the clinic.


Dr. Richard Clendaniel, PT, PhD  58:09

No, not really. But if you have eye pressure, sinus conditions that can make you feel just a little off balance, a little kind of heavy headed or lightheaded, but not a direct connection between sinuses and the vestibular system.


Dr. Abbie Ross, PT, NCS  58:25

How about sleep apnea and dizziness?


Dr. Richard Clendaniel, PT, PhD  58:30

So people can be dizzy with sleep apnea. And that really is related to sleep apnea and not sure if it’s due to the vestibular system. Yeah, I’ve seen folks who, with sleep apnea, feel fine in the morning when they wake up as one gentleman I remember would take a nap during the day and then feel dizzy after his nap. But he didn’t use a CPAP machine when he’s taking his nap. So that was a problem.


Dr. Danielle Tolman, PT  58:59

Well, I do have to say that we had some really, really great questions in the chat and you are a rockstar for answering everything we threw at you today. We greatly appreciate the time that you took to talk to us for this conference. Thank you so much.


Dr. Richard Clendaniel, PT, PhD  59:15

My pleasure. It’s good to be here.


Dr. Abbie Ross, PT, NCS  59:17

Thank you again, Dr. Clendaniel. Thank you to our attendees. We will shift gears now to the live patient panel which is going to be hosted by the amazing Laura Cala.


Dr. Richard Clendaniel, PT, PhD  59:30

You’re welcome. Have a good day, everybody.


Dr. Danielle Tolman, PT  59:33

All right. Let’s see if we can bring Laura up here. Ah, long time no see, Laura. How are you?


Laura Cala  59:42

I’m so excited to be back for a second conference. The first session was absolutely amazing. So I’m really excited to hear what the patients have to say now.


Dr. Danielle Tolman, PT  59:53

We’re going to bow out now and we’ll pass the torch to you. Thank you so much for joining us, Abby. Thanks also for being a great host, we’ve got a long week ahead of us full of amazing information. So I hope all of you who are tuning in today stick with us for the rest of the week.


Laura Cala  1:00:16

Hi, everyone, I’m so excited to be here for a second conference. I think we’re just bringing in a patient panel now. So we’ve got Lynn, and Kimberly on the other line. Welcome. Thank you so much for joining us. And our first question relates to what did it feel like when you first discovered you have a vestibular disorder? I know for myself, this was something that was quite confusing. I’d never heard of the word vestibular before. But I know I suffered from migraine. Lynn, can you tell us your experience of what it felt like when you learned that you had a vestibular disorder?


Lynn Johnson  1:01:03

Okay, I’m sorry, everybody, but I have hearing loss. I’m deaf, so I had to read the question. It felt like I was in the abyss, a place where I just could not grasp what was going on, physically. And mentally. I felt like I just kept falling and I couldn’t grab onto things. But I felt lost. I felt lonely. It felt awful. I almost felt like I was dying. The doctors didn’t know what was going on with my body, I felt my body literally not responding well. So I was very anxious. And like I said, I just couldn’t grasp and get my stuff together. And physically, it feels like you’re falling, and then you can’t even catch yourself. You know, balance is an interactive thing when you have to go opposite of what’s happening to you. And when you don’t have that ability, you become desperate in many areas. So I don’t know if I’m answering your question fully. I had vertigo for a short period of time where I was spinning. But I also would describe it as, I never liked the merry go round when I was a child. But I felt like I was in a perpetual merry go round, nauseous, and also spinning where the eyes were moving opposite of where my body was moving. I also experienced pain in my ears where I was losing hearing, and tinnitus, a whirring sound in both my ears. So it was maddening. I felt like I was going crazy. But it’s the most awful place physically to be. Because your body is failing you it’s broken.


Laura Cala  1:03:42

Kimberly and I are nodding along as we listen to Lynn. And I think as a vestibular patient, the biggest part of it is feeling, and I know I’ve said this before, like you’re crazy. No one understands and you feel so out of body. So Kimberly, can you tell us a little bit about how it felt when you learned that you had your vestibular disorder?


Kimberly Warner  1:04:10

Well, I definitely resonate with everything that Lynn said, the loneliness, the isolation, the complete loss of agency over our body. Suddenly, it’s just not functioning the way that it used to. But I will say that for me, I developed symptoms in 2015. I didn’t get a proper diagnosis for about four years. So to actually get a diagnosis for me was a relief. Because I didn’t know for so long. You know, every single doctor was chasing concussion, traumatic brain injury, you know, autoimmune disease, whatever. But there were so many different things that weren’t leading me to a community, to resources, to a sense of hope. I had nothing for those years. So actually, for me, to be diagnosed was, I was already on the journey of finding everybody through VeDA and through some of the work with the ambassadors, but it was just like, ah, now I can tell people why I’ve dropped out of my life and why, you know, I went from being someone that was so high functioning to being somebody who questioned everything that I did. Even if it was as little as, like, making a coffee date with a friend. It was like, well, maybe I can, maybe I can’t. And so the answer of a vestibular disorder helped me in a way.


Laura Cala  1:05:46

I can completely resonate with that. My diagnosis took two, three years as well. And you sort of mentioned, scrolling on to our next question around tools, is finding that community and finding VeDA and almost feeling like it’s a relief, and we talk about how we all are quite high functioning. And then to have something like a vestibular disorder thrown upon us. We just want to help other people feel like you’re not alone. So my next question … Kimberly, because you touched on it before and you touched on the ambassador’s, what tools did you use initially, when you learned about the vestibular disorder? You spoke about getting a diagnosis and being on a journey. Where did you turn to first? I know, being in Australia, our resources here are very limited. And I remember finding Alicia Dizzy Cook, and then I found VeDA, and then my whole life, it just felt like it changed because I felt like I wasn’t alone anymore. So what tools did you use?


Kimberly Warner  1:06:52

Exactly the same for me, community was everything. VeDA became a place for me to learn from other people, not just those who had MdDS, but those who were struggling with all types of vestibular disorders. And we went and started the Life rebalance Chronicles project. And when we started that I was deep into having a hard time staring at a screen. And I was feeling like, you know, I needed other people to help with that process. But after learning from everybody, for the first time in a few years, I started trying new things again. I knew that the traditional vestibular therapy didn’t work for me, it often doesn’t for MdDS patients. And so I didn’t do that. But I went through the VeDA site, and I found a PT that might be able to work with some other things and work with my balance and my neck. And so I definitely did some structural work with my neck that seemed to help. And I actually started to get courageous again to try Western medicine, after somebody in the Life Rebalanced Chronicles had had some success. So I am using that now. And so I slowly was just trying little things again, after abandoning them all, but it started with community and being able to communicate with people that were also experimenting with some possible, not treatments, but just adaptations.


Laura Cala  1:08:36

It’s about gaining confidence in yourself again, because you lose such confidence in yourself when you’re going through the process. I’ll switch over to Lynn now. Lynn, what tools did you use to learn about your vestibular disorder when you initially got diagnosed?


Lynn Johnson  1:08:52

Well, you know, I have a background in science and science research. So I was all over the internet searching for my own answers because, like Kimberly, I didn’t have two years but it took several months for them to diagnose me. but I was reviewing all over the internet and got information together but still wasn’t quite hitting it and I came across VeDA’s website, and I began to explore all that they had. This was back in 2015. Also, Kimberly and I are sisters, soulmates:) But anyway, I went through everything, I read through treatments, whatever they had available, as related to autoimmune inner ear disease. But one thing that I took away from VeDA was the aspect of being able to empower myself with this illness, to identify my purpose. I connected with David Morrill and his online support group with Deborah Lansing. David literally saved my life. I’m such a social person. And at that time pre-pandemic, I needed interaction with people. And the online support group gave me face to face individuals that were going through the same experiences that I was going through as far as balance, vertigo, lack of diagnosis, isolation, all of it, and I connected with people who are able to get the feeling and the handle of being used for good. And you know, my faith has a big part of my healing because I believe healing begins on the inside out. And God told me that I had to share my story. And that I had to connect with other people. And to get out the information. VeDA allowed me to do that. So the mental/emotional aspect I was able to get from VeDA. Cynthia Ryan, I work with her. We know Cynthia, but anyway, I work with her, I’m just glad that they give me an opportunity to express myself within what’s going on with this illness, and then be able to share and communicate with awesome people like Kimberly, and the cast of The Life Rebalanced Chronicles. I would have to say that VeDA has given me a lot of the tools online that they have, as far as information direction to caretakers, all of that and connecting with others.


Laura Cala  1:12:35

I think we don’t say it enough. Look at this conference, what Cynthia has done and what David has done. I had a very similar encounter when I found his online support group. And I think Kimberly touched on this too. And again, we’ve spoken about it, it’s finding people that understand exactly what we’re going through. And I think for most of us at the beginning of our journey, we have absolutely no idea what’s going on. You know, I know I spoke to so many different doctors, Kimberly touched on it as well. You get given this diagnosis. I was told that I had a virus at one stage, I was told I had generalized anxiety disorder. And you just feel like you get to this point that you don’t want to keep explaining yourself anymore. And the work that David and Cynthia and all the team at VeDA do is just absolutely incredible. And I just don’t think we say it enough that they’ve completely changed our lives. And I know I am absolutely always grateful for them. So I know we’ve sort of spoken around about where we’ve been in our journey. But a question a lot of people have is what does the day in the life of his disability sort of look like? So my diagnosis, when my symptoms started in 2016 I had very similar symptoms to Lynn where I couldn’t even walk 10 meters without feeling like my disequilibrium was absolutely unreal. But fast forward to 2000 and you know, I live a much different life. But like Kimberly said, I’ve learned to pace myself. I have a bit more confidence in what I’m doing. And I know how to treat my symptoms and manage them. So cross over to you Kimberly, what does your day look like? Are you having the same symptoms you did at the very beginning? How do you manage it?


Kimberly Warner  1:14:34

Yeah, you know, like you it’s gotten a lot better. I was completely bed bound and not leaving the house and frightened to walk across the street gripping my husband’s hand wherever we went. And unable to even look at my cell phone, let alone a computer screen. So, for the first two years I was just so disabled by this experience. And the anxiety was a huge part of that as well, because I didn’t know what was happening to me. So I think that was compounding it. Fast forward to now. I mean, I had it pretty severe. I think we all rate (our symptoms) on a scale of one to 10. But even a year, six months ago, I would definitely go through waves. I’d wake up and go, Okay, I can’t do anything today, I have learned to have a lot more grace with those days and to not push through them. Four months ago I started a new medicine and it has dropped my symptoms so significantly, that most days and it’s imperceptible, it’s there if I really tried to tune in, but I’m actually visiting my mom right now because she broke her arm and I got on a plane last week. And I didn’t have to recover for a minute when I stepped off that plane. And that was a first for me. Usually it took me two days to feel gravity again. So a day in the life for me now, I’m definitely having some days that are like two foot waves today. And I just sort of ride it and allow myself to take breaks much more than I used to allow myself to sit down and rest and put my feet up and say no, when I need to say no. If somebody wants to get together on a day that I know that I don’t have any energy left for it, I have learned to say no. So a day in the life now is actually pretty great, like pretty normal, again, normal. But even better. Because this experience, like Lynn has talked about, has healed my heart and my soul in a way and brought a deep connection with human beings and with a relationship to being imperfect and being okay with that. And allowing that to be a vehicle and a vessel to connect with people and to love more. So I actually feel more joyful. Even though my body doesn’t feel great all the time. I feel more joyful these days than I did before this started.


Laura Cala  1:17:42

I can resonate wholeheartedly with that. Looking at the comments that are coming through. So I’ll switch across to Lynn. Lynn, what does a day in the life of your vestibular look like now?


Lynn Johnson  1:18:00

Well, I can tell you each day is different. Because when I wake up, I don’t know what type of day it’s gonna be. Because depending on what I ate, it could be something I ate, it could be the weather, it could be stress or whatever. So some days are much better than others. But right now like Kimberly said, I’m six years plus almost seven years now. And I can tell you, and I want to just say this, those of you who have gone through a vestibular disorder, the brain is a unique and adaptive organ and you will to some degree adapt and get better, not that your symptoms will necessarily change. But that the way you perceive and accept it will, so your day will get better because you will be fighting, and you should be fighting to maintain your quality of life, which is what I do every day. I’ve learned to prioritize my day better so there’s a lot like Kimberly said, a lot of soul care a lot of self care now.  Nails, hair – I do that more. So now I give myself grace. It’s okay for me to say no, it’s okay for me to lay down. And you know, for a long time I have heard a lot of people fighting using the cane, using the walker, but I have no problems. I grabbed all the accommodations I could find. I use a walker. I use a wheelchair, I shouldn’t say a wheelchair, more of a transport chair. Because you can’t move, I have BVH. So I can’t even use a wheelchair, somebody has to push me. I use a cane. And those are all necessary in order for me to use every day, to maintain my quality of life. When I wake up, just getting dressed – the balance, the dizziness is difficult. But I push through it, because I want to have a good day. So I’ve learned to slow down way before this pandemic, like, you know, the pandemic for us was okay, because God had already shown us how to slow down how to love ourselves, how to pay attention to those relationships that are important. So my day is filled with trying to love by myself, and also love others, and trying to push through this symptom so that I can have a good day and a good quality of life. So day to day that can change it might mean, you know what having an autoimmune inner ear disease, it means I have two sets of problems, slow down my immune system and also deal with the vestibular damage. So I take medication for that. So some type of medication makes me feel yucky. And I can’t do things and it’s okay to say no.


Laura Cala  1:22:04

That brings me on to my next question. And I know we’ve touched on it now, around how having an invisible chronic illness changed your life. And I’ve said it before, and people think I’m crazy. But I think listening to you both speak. It just resonates with me that I had a really crazy life. My life was boom, boom, boom, boom, boom. And when the vestibular happened, I felt like I was failing because I had no idea what was going on. But now when I look back, the vestibular disorder is the best thing that happened to me. Because, like Kimberly said, it just brings an immense amount of gratitude to your life. And I think it’s that you slow down and you appreciate every single moment and you learn to really love and trust yourself again. And I think it’s something that so many people struggle with. So I’ll switch over to you, Kimberly, to just sort of explain how has having an invisible chronic illness changed you


Kimberly Warner  1:23:13

in every way. I was a total fix it perfectionist control freak before this. I thought that there was an answer for everything. And I even was diagnosed with an autoimmune disease when I was 21. I was determined, you know, so I’ve been on this fix-it train for a long time. And this was the first thing that I had zero control over. And believe me, I fought it. I mean, I tried everything. And in that fighting for two years of just non stop chasing doctors and chasing cures and reading every book and every possible solution, refusing to be in relationship to who I actually was, was causing so much anxiety and depression. It really stopped me from relating to who I am, from my experience in this life. And that is the biggest difference between who I was and who I am now because as soon as I started to go, I’m just going to be in relationship to this experience. And I, literally, for me, it had to mean I had to stop trying to pursue treatments for a while, like for two years. I was just, like, screwing it. I am not going to try, I’m not going to go to doctors anymore. I am just going to communicate and learn from others on how to be unfixed and how to live this way. And that was a tremendous act of self love. And in the years of doing that, it’s not just I’ve realized an act of self love, but learning to love others. Because if you can’t love imperfections, then we can’t love anything. I mean, because we all have stuff. And it’s just deepened my appreciation for humanity and all that we endure. And all the ways that the cracks in us make us more beautiful. So I know that’s kind of not very an outward answer for like, how my life is different. I am now running Unfixed Media and in this conversation with chronic illness patients every day, and I love that work. But the deep, deep change is inside. Just being okay with not being okay.


Laura Cala  1:25:54

I just resonate so much with that. Lynne, over to you. How has having an invisible chronic illness changed you and your life?


Lynn Johnson  1:26:05

Oh, do you have time? No. Wow. Well, I would have to say, number one, it has deepened my faith. I’m no longer a superficial person. Superficial meaning that I was like a right-fighter, you know, oh, this has to be this way. I’m so much calmer now. I’m doing a Bible study. And the pastor is describing animals like personalities. And he asked us to ask a family member to describe the animal that they think I was. And my daughter had said to me, Mom, you were like a shark before your illness. And now you’re more like a fox, meaning she was telling me that I was a right-fighter. And now I tend to be more compassionate, more listening and trying to hear two sides. So it has calmed me. But one thing I will have to say is that I’m grateful for this illness, as much as I hate it, as much as it hurts, I would have to say I’m so grateful for my close relationship to the Lord and my heart. So this vestibular disorder is a blessing in that it kind of pulls me closer to God. And it pulls me closer to what really matters in life. You know, one of the struggles that I think all of us face is we’re hit with this, it disrupts our world, they just turned everything off. And you start questioning your purpose. So believe it or not, even though I was an award winning high school biology teacher, and I had to stop and retire early. This was not my plan. But believe it or not, this gave me my purpose, because God had worked it inside me through this illness. So I would have to say that my vestibular disorder has taken away a lot, but that’s given me so much more. And like Kimberly said, that sounds just like the Oh, goody goody answer. But all of us that go through it know what I’m talking about because, I think Steve said it best in the Life Rebalanced Chronicles. We are all on a spiritual journey when we’re in this illness. Whether or not you know it or not, this is a spiritual awakening. So you have to get in touch with who you really are, and what you are really about. So, um, you know, this illness, it sucks. It really sucks. Why me? Why, but it’s okay because I’m all right. It’s well with my soul, because now I’ve connected to my higher power. I’ve connected to my spirit. So you know what I take away? And that’s the greatest gift of this – discovering who I am. How God sees me. That is the best gift.


Laura Cala  1:30:17

You’ve just touched on so many things for me. And I know Kimberly is nodding along as well. And it sort of alludes into our next question around how do you tell other people about your disorder? I know for me at the beginning, I almost felt ashamed, not necessarily ashamed, but I just didn’t know how to explain it. And I, I know that I felt like I was almost justifying myself to other people. Whereas now when I explain it, people sort of say they want to feel sorry for you and vestibular is me, and I’m happy to be me. And I think it’s something that all of us go through the exact same. You find your people within this beautiful community. And the justification for having to validate yourself to others has… it just completely changes. So Kimberly, how do you tell others about your vestibular disorder? And when they turn around and sort of say, what is vestibular? How do you explain it?


Kimberly Warner  1:31:23

I’m puzzled by this question. Because I’m realizing that I have not had to explain it for a number of reasons. One, because of the pandemic. And, you know, many of us, actually, this sort of lifestyle has worked really well for us. And so a lot of my friendships and my career prior to this disorder, and prior to the pandemic, are not… really, other than, you know, an occasional Instagram, hello, you know, they’re not there. And then there’s this whole, huge, beautiful community now that I interact with every day that already know that I have this or they’re dealing with other disorders or chronic illnesses. And so there’s no explaining. And so I’m actually trying to reach into my head and think when was the last time? I don’t think I have had to communicate it. And when it was really bad and I was in the early stages and trying to communicate it, you know, on set with crews and people I think I didn’t have the tools. I didn’t even know what I was dealing with yet. So I haven’t learned. I want to learn. Now I want to know what Lynn says about this because I’m realizing I don’t know.


Laura Cala  1:32:54

I think it is something that we will definitely talk about later in the week. But having the pandemic has worked in so many sort of wonderful ways. I know that sort of probably sounds strange for someone who isn’t going through what we are. I know myself, I used to work a full time corporate job in a busy city office. And now I work from home. And it’s the best thing ever, because I think I feel more empowered, and more of myself. And you can put those limitations up straight away because you’re more in control. And I know we sort of spoke about that before. In the initial stages of vestibular, you lose all control. And I guess it will be really interesting post pandemic to sort of see where that goes. But I think for many of us, it’s sort of assisted in this journey of recovery. Over to you Lynne, how have you found telling people about your vestibular disorder? Do you have to explain it to others? Or have you sort of been in a similar situation to Kimberly?


Lynn Johnson  1:34:03

You know, I noticed this comes up a lot. But for me, I never had the need to feel like I needed to explain vestibular to anyone. Maybe because I’m a teacher and when I would describe it I described it well enough that they got it. But I simply say “Look, you know, I have a balance issue. I can’t, you know, My ears got damaged.” And I say you know, “I got a bobblehead condition my head bobbles, it feels like it’s bobbling back and forth.” And I simplify really to be honest with you. When I say simplify, simplifying it not minimizing it. But you know, one thing I feel about this whole VeDA and the vestibular organizations, sometimes I feel like a stepchild and all of us who have autoimmune inner ear disease knows what I’m talking about. Because our vestibular issues are minimal compared to the hearing loss and what that brings. So my explanation, you know, I never really felt the need, like I had to really explain it, because it is what it is I’m not looking for that validation. I’m not looking for that correction. So the only person that and I need that from all my doctors. They need to know what vestibular is what’s causing it. So I never felt that. But when I’m describing it to friends and relatives, I use visuals like bobblehead, merry go round, that kind of thing. I kind of tll them what my symptoms are, what I’m experiencing at that time. I feel like I’m drunk, you know. That kind of thing. But I never really felt the need that I had to explain it to people because I don’t need them to really know, you know, that can’t do anything about it. I only I can. So I hate to sound cocky or insensitive when it comes to that. But why do I need to explain it. One of the reasons why I joined VeDA as an ambassador many years ago was that one thing, I felt like there was a lack of education. So get out there and just tell people what the vestibular system is, you know, do it in a way that relates to you, you know, these little organs in that ear, the inner air has balance and hearing that kind of thing. But that’s what I did. And that’s what I do. Just kind of visualize it, and talk in sort of common ways to explain it to people, but I don’t need them. I don’t need them to really know what it is. I don’t ask them “What cancer? What type of illnesses?” Why do I explain when, look, we don’t have to explain it. Just talk about your symptoms, what are you feeling? That’s the most important part to me. The doctors are the ones that need to education, the physical therapists so that they can treat and diagnose this in a timely manner. Because I’m kind of resentful or, you know, angry in a way. The doctor that saw me when I first got my illness, if he would have given me steroids, high dose of steroids, it could have possibly saved my hearing. But instead, for six months, I went without having any treatment. So my hearing gone. And if that doctor was educated in the Vestibular Disorders, symptoms, I could have possibly been able to hear and not be deaf. You know, I’m just so grateful. I just want to put this out there God works in mysterious ways. And I’ve just gotten a cochlear implant. So I’m hearing in my ear for the very first time in six years. God is so good. That is a miracle. So God uses our medical doctors and medical knowledge to bring healing to the people. So they need to be educated in what vestibular is. Thank you VeDA for being that vehicle. 


Laura Cala  1:39:06

Oh, absolutely. No, it’s so true. And I think you know, I think I’ve said it to a lot of my vestibular sisters is we don’t need to talk about it. And we need to be almost proud of our diagnosis. Because, you know, I really think there are many people walking around that have vestibular disorders and have got absolutely no idea what’s going on. And they don’t have the information. And I know I can see in the chat that simply is actually put up a really great link, which is about educating family and friends. But I am I’m 100% with your. It’s one of those things we need to be loud and proud about. And I had a similar experience with my GP. Initially when they thought I had just generalized anxiety disorder. I sort of look back on it and I think if I had settled with that diagnosis and accepted for the medication that he had tried to put me on. I don’t think I would have ever found out my diagnosis because I would have bandaided the actual problem. So I think it is super, super important that we talk about this. And we sort of combined together as a community. I’m just going to go into the chat because I know there’s a couple of people asking a few questions. So give me two seconds, everyone is really, really enjoying the information that both of you are putting out there. Um, so let me just have a look. So we’ve got a question here that says, what type of things can those of us around you do for better support as you learn to live through this disorder? So I think we’ve sort of touched on a bit about this before, around the support and better communicating. How do you think people around you could better support you, Kimberly?


Kimberly Warner  1:40:59

I definitely, I think it was Alicia that said it in Life Rebalanced Chronicles, but to have somebody educate themselves, you know. I agree with you. I love what you just said about we need to be loud and proud. And I’m going to, I’m going to start waving my flag because that was great. But I do think that it’s such a kind gesture, when a family member or a friend says, hey, you know, I just decided to spend a half an hour reading about this yesterday. And I wanted to because I wanted to know more about what you were experiencing. And wow, you know, that was really insightful, not because they want to offer cures, or hey, you should try drinking celery juice or any of that. But because they just want to learn about what your experience is, I think that is such a kind and helpful thing to do. It’s kind. And then helpful is to check in. I mean, when my husband, he just asked me like, what kind of day are you having? And if I tell him that I’m a little bit dizzier, I don’t have to ask him if I need to grab his hand to walk across the parking lot. He just grabs my hand. And he doesn’t question when he walks into the office, and I’m laying on my back with my feet up the floor, and you know, are up the wall. And so I think just that, because like what Lynn said every day is different. So don’t assume that because yesterday you were having a super day that today is also a super day, just ask and check in and it doesn’t need to be this huge conversation. It’s just like, you know, checking the weather. How’s the weather today?


Laura Cala  1:42:40

No, I could definitely resonate with that it is really, it is something when somebody else does that takes that little bit of an extra step to read about you to try to understand what you’re going through. I know my partner has done something similar. And it’s really, it’s nice. It sort of normalizes it, and I think we forget, and I know we touched on it before. But for us it’s normal now and we learn to to work around it. So Lynn, how do you think people around you could support you better with your vestibular disorder?


Lynn Johnson  1:43:16

Hmm, that’s a good question. I have an excellent support system. And my husband and you know, I have an identical twin sister who does not have a vestibular disorder. As a matter of fact she’s watching now. So I would have to say like Kimberly touched on it. I think that eventually we make this look good. Not that it’s good, but you know, we live through it. So our days look like we’re better. So don’t assume that we’re better, you know, that we’re happy, that there’s no symptoms anymore. You know, and to have the conversation of how are you really doing that? How are you dealing with your symptoms today, to just stop and ask and not just go through the day “Oh, she she could do that she can do that. So everything’s fine.” No, it’s not really the case. We’re pushing through it. So I think having an open conversation, being sympathetic and being ready to chip in. You know, my husband has been since day one. I’ve been blessed with a husband who is very supportive of me. When we go out my family doesn’t want me to stop my quality of life. So they went out and purchased a transport chair. They went out you know, like get the accommodations so that I can be included. But I would have to say my struggles more or less with society and others when it comes to hearing loss. A lot of people are insensitive to that, like, constantly asking for a, quote, closed captioning constantly, you know, can you repeat that they get impatient with that side of it. So I would just say, more patience, have more patience with us. You know, but more or less, like you said, the education part about it, because our illness is not physical, I think a lot of it is mental, mentally. So we could be feeling depressed most of the time. So I think people, our support system needs to be aware that the mental side of this can be very depressing, and isolating so they can be more inclusive at times. And be aware of that part of it. So to bring joy, some seeds of joy in your day would be nice.


Laura Cala  1:46:24

No absolutely beautiful, beautiful answers, and sort of leading on from there from your conversation Lynn, and we have spoken about it, about the anxiety that comes with vestibular dysfunction. And I mentioned earlier, I initially got diagnosed with generalized anxiety disorder. And at the time, I knew I had anxiety, but I knew that wasn’t the main cause of it. And it was really, in my healing journey and sort of from 2016 to now. And sort of, I guess, as we’ve explained it before the pacing and understanding exactly where we are, what are some of the… how do you cope with your anxiety that accompanies that? Can you talk us through that, Kimberly?


Kimberly Warner  1:47:13

Yeah, I had never experienced anxiety, I’d had like nervousness, but I, and I was definitely like, driven, but this was a completely new experience for me. So I didn’t have any tools for how to deal with it in the beginning. And it was what I actually had one physician tell me that they think in hindsight that I probably was having like a two year long panic attack with little tiny breaks in between, but it was the, it wasn’t, I just, I probably should have been sedated. Like I probably should have just had an opportunity for my brain to reset because it just was firing and firing and firing. So I really had to dig into like, how do I work with this new part of myself. Sensations that would just occur without even the thoughts you know, they call it physical anxiety, where you’re not like, nervous about even the experience you’re having, but your body is just firing the chemicals. And that’s just odd, because people will be like, well let’s you know, what are you thinking about what’s causing the anxiety and I’m like, I’m not thinking about anything. I literally woke up in the middle of the night with anxiety. And so I worked with a therapist that the tool she gave me is T L O and that stands for trust, let go and open to the experience and that is something I use when I start to feel these sensations the chemicals starting to surge, because as we all know the initial responses to like push it away and grip it and go and then start to have the thoughts of like oh no, no, I don’t want to have this experience. So trust let go and open to the experience which is really just kind of leaning into the sensations and not the thoughts about the sensations. Oh my chest is tingling, I feel burning up and down my torso, I’ve my stomach is clenching and really getting curious. Almost like an artist might get curious about you know “how would I paint? What would be the color of my intestines right now or?” And so it cuz I’m really visual. She actually had me focus on, and there was an example that she said this is actually engaging your executive functions in your brain. So if you’re able to allow those sensations to be there and then become curious about your environment, like oh, look at the lamp there and what an interesting way the light is hitting it and is there anything else in the room that has that color and you just start to kind of focus on other things in the room. Eventually then your nervous system can calm down because you’re engaging in different parts of your brain instead of the fight or flight. So that’s just a tool that I use. Now, it starts with first just kind of going, okay, here we are, instead of fighting it, let’s just lean in and feel it.


Laura Cala  1:50:15

No, no, I can relate to that I did a similar. A similar thing with a therapist where I was sort of cognitive behavioral therapy, where you sort of put things in jars. So like when things happen, it’s sort of very similar to yours, sort of really identify what that is. And you shuffle that to one side, and you assess it, and you look at it. And I guess it’s openness, like you were talking about in terms of understanding, which is an amazing thing. Because your first instinct is to think oh, my gosh, what am I going to do? It’s panic mode. Yeah. So, Lynn, how about yourself? How do you cope with the anxiety that often accompanies vestibular dysfunction?


Lynn Johnson  1:50:56

Well, you know, like, Kimberly, I would not describe myself as a depressive person. but when I, about five months ago, I lost total hearing, I was deaf. And I didn’t know it but I was a functioning depression person. I was depressed, very depressed. And I went for a physical and adopted said when you’re depressed. But she didn’t prescribe any medication, thank God because I wouldn’t have taken it anyway. But she just said it. And I went, anyway, I spiraled into a deep depression. And I was, I was really done. And I tell you how I handled it, I was handling it well. And my, I happened to be on a zoom for Bible study and my pastor said, he saw it on my face. He said, I wear my depression on my face. So he came to visit me. And we just simply talk. So I would like to say that I at that time, my depression was handled through therapy. Not all therapy comes through a therapist because I was able to talk things through them. And it ended well, because you know what he said to me? He said, Lynn, what I see it’s a whole person who happens to be deaf. And I know we’re talking about vestibular illness, so you can fill in person who happens to be whatever, but Lynn, you are a whole woman who happens to be deaf. That statement lit and put me out of the question, because when I was looking at my illness, as if it was like, the thing that define me, it was death, but it really has nothing to do with the core of who I am. So I handle my depression by talking to others, I have to get it out what’s really going inside. But I also do a lot of soul care. I’ve learned to try to express my faith and myself creatively. I started doing an illustrated journal and that helps me get my thoughts and my connections out. I even signed up with an online (service), which allows you to creatively make things like the painting here you see. You know you paint and do all that kind of stuff. So I am able to manage my depression by creative expression. But most importantly you know, God put people in our lives so that they can encourage us and so that’s what I use my position and where God positions me to really express and open myself up. I kind of wear myself on my sleeve. So I’m a people person so I talk to people I really connect with people and relationship. My twin sister and I, she, even though she hasn’t gone through this, she’s really my piece and my other brain that brings me out of my depression. So I have to say my relationship with the Lord and my relationships with my husband, my sister, and my family, I value those in that way I tried to bring myself out of it. I make sure that I read through the scriptures and the promises of God, so that they really connect with me and bring me out of my depression. Because God works, you know, it’s true. You have to encourage yourself. So that’s how I deal with my depression. And you know what? This, dis, that’s the one thing, the one tool that this has given me, to be able to encourage myself and not be depressed is the hardest thing and it’s the lesson that we continue to live every day. It’s not fun. But I think that what this disorder has taught us. How to be joyful in spite of our trials out in spite of our pain. So that’s it kind of deal with depression, I made sure I express it.


Laura Cala  1:56:20

And that’s a wonderful answer. I’m just going across to some of the questions now. Kimberly, there’s a specific question for you. And it is, what are some of your techniques to help get through your workday while looking through the lens of a camera?


Kimberly Warner  1:56:36

That’s a great question. And that has been the biggest and that’s, that’s my Achilles heel that every time I stare at a screen, I know my symptoms are going to go up. And so these glasses help. I know, we all have our certain types of glasses, this actually doesn’t just have the blue light filter in it, I did try the red. What are those, the axon glasses? I didn’t have as much success with those. These actually have a little bit of a magnifier in them. And what I didn’t realize is that I was also straining my eyes. And so I have my brightness, way, way, way, way, way, way down. That is huge. In fact, some people can’t even see my screen, because it’s so dim. Right now it’s bright, because I, you know, you need to see me. But I, I pay for it. So when I can I bring it way down. And I also have these magnifiers so that I’m not straining the backs of my eyes. I will also, I tried vision therapy, and that made my symptoms worse. So I will say that vision therapy may work for some people, but the strain that that can put on your eyes can create more brain…. That’s how I developed brain zaps, if any of you have those. So what I learned is to put a hot patch on my eyes or I rub my palms together throughout the day and I’ll take my glasses off and I’ll just put the heat of the palm of my palms on my eyes. I’ll close my eyes. And this sounds funny, but like, no, just relax, like the muscles around your eyes but try to relax the muscles behind your eyeballs. If that makes any sense, and it takes a minute, but just when you do it, I think it resets something. I also try to do the 20-20 rule where you know, 20 minutes on and then 20 seconds off and looking away. Not super great at it. But I also try to only schedule one zoom a day, I have had some of those days where I can’t avoid it. And I definitely pay for it. So there’s some rules, just like Laura was saying, we have a little bit more control when we work from home. And I try to stick to a schedule, I stop looking at a screen every day at 4pm. I close it up, I go into the kitchen, I do analog work, I sit down on the sofa, I play with my cats, and tell my brain that there’s that time that is not going to have a screen. So all of these little things. None of them was really dramatic. But all of them together I think have helped me. And despite that it still is the hardest thing I struggled with. So hope that’s helpful.


Laura Cala  1:59:34

No, that’s a wonderful answer. I want to fit one more question in because then we are right on time. Kimberly, another question for you around that therapy that didn’t work for you. Now whether you want to answer the question or not around what you are taking a couple of people have asked I’ll leave that one completely up to you whether or not that’s something that you want to answer in the chat but are you able to go into some detail around the theory that didn’t work for you?


Kimberly Warner  2:00:01

Yeah, just traditional vestibular therapy. I tried it twice. And I because of MdDS. And the way that motion helps us, my vestibular therapist wasn’t able to get, you know, traditional physical therapy, tried to aggravate the symptoms so that you can kind of like work yourself towards getting more relaxed and more accustomed to that. But every time he would try one of the vestibular therapies on me, I felt better, like instantly, because the motion anytime I’m in motion, I feel better. And then I stopped and it’s worse. So he wasn’t able to find a baseline for me, even the lights, the goggles, that with lights on just all that stimulation, iIt’s like it distracts my brain from the motion that’s happening inside. And so I’d be like, I feel great. And then it would take it off. And I’d be like, blah I feel terrible. So that’s why the vestibular therapy just didn’t work. For me, the neck therapy did help. Just working with some of the upper cervical spine, just gentle dental work. And because I can’t figure out how to get access to the comments here, I’ll just tell you, I’m on Effexor. And I know that someone else in the Life Rebalanced Chronicles started that and I’m on a super low dose, not the dose that my ENT gave me. And she was like, they don’t even make it that low. And I said, I think they do. And my neurologist prescribed it at a super low dose, I take 25 milligrams in the morning. And within about three weeks, I started noticing that I wasn’t getting as triggered by lights, even the screen is better. Lights, lack of sleep, stress, all the normal triggers hormones. It just was dimmed a little bit like that. So Effexor and I have zero side effects from it, like zero. So…


Laura Cala  2:01:59

Yeah, no, I mean, I’m on the exact same as you and I’ve changed my life. 


Kimberly Warner

Wow. Okay. 


Laura Cala

Yeah, no, it is. And I’ve had a few people ask me the same questions, but no, so, and I see Cynthia  sort of popped on the chat, it is no, it is important to know that everyone is different. So it is important to get an accurate diagnosis. But ladies, you’ve been absolutely amazing. I am looking at the time and I could probably talk to you for a whole hour or so more. But thank you so much for talking with everyone today. And thank you everyone for jumping on. Thank you for joining us at Life Rebalanced Live, brought to you by the Vestibular Disorders Association. If you’d like to support programming like this, please visit VeDA’s website and make a donation. You can also register for the Evening for a Life Rebalance fundraiser at the And don’t forget tomorrow’s session is on neurological symptoms associated with long haul COVID. Thank you so much, everyone. I look forward to seeing everyone tomorrow. Lynn and Kimberly, thank you so much for sharing your experiences with everyone. I know myself watching you. I got a lot from it. So I can only imagine what others have to say. Have a good night and good day everyone. And we’ll see you tomorrow.


Kimberly Warner  2:03:22

Thank you. Bye. So good to see you Lynn.