This is a transcript from the 2022 Life Rebalanced Live (LRL) Virtual Conference on the topic of “Vestibu.” Learn more about this annual conference at vestibular.org/LRL.
Dr. Danielle Tolman, PT 00:02
Welcome, and thank you for joining the Vestibular Disorders Association for day three of 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 therapist with balancing act rehabilitation members of VEDA’s board of directors and self-proclaimed Vestibular holics.
Dr. Abbie Ross, PT, NCS 00:24
We’ve had a great first couple of days with some really good information presented, awesome questions from our attendees, and some relatable experiences shared with us from our patient panels. So we’d like to thank you for joining us for both days one and two, and also for being here with us on day three. We’d also like to thank VEDA’s leaders, donors, staff members and volunteers for their countless hours in putting together this great conference. With their contributions, we’re so pleased to be able to provide the live portion of the conference at no cost to our attendees. Now if you do wish to have access to the presentations following the live event, we will have them available for purchase.
Dr. Danielle Tolman, PT 01:02
Now 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 Dr. 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 back in 2018, and 2019. We appreciate his continued support and we’d also like to thank our silver level sponsors Otonomy and Electrocore.
Dr. Abbie Ross, PT, NCS 01:31
Day three. Today’s topic of conversation is Vestibular rehabilitation therapy, also known as VRT. VRT plays a significant role in many people’s lives with Vestibular symptoms, whether it’s helping them to improve their confidence, their safety, their function, their overall quality of life. So today’s discussion is really to dive into what is VRT, what does it look like? How does it work? What does the research say about VRT what you can and cannot expect from your Vestibular therapist and in your treatment sessions. We’ll also touch base on what the new advanced advancements are in VRT, such as the use of virtual reality, for example.
Dr. Danielle Tolman, PT 02:13
So without further ado, we’d like to introduce you to today’s speaker, Dr. Jeff Hoder. Dr. Hoder is an associate professor within the doctor physical therapy program at Duke University. He also holds a clinical specialist board certification in neurology through the American Board of physical therapy specialties. At Duke. His clinical areas focus on management of gait and balance issues for individuals with movement disorders in central vestibular dysfunction. Dr. Hoder, thank you so much for joining us today. Why don’t you give us a little bit of your background as well as how you ended up in the Vestibular world?
Dr. Jeffrey Hoder, DPT 02:44
Oh, gosh. So I’m going to date myself here. I graduated physical therapy school in 1998. And I decided from my school experiences, my clinical rotations that I really wanted to work in an academic health care system. I really liked being in an environment that was focused on staying up to date with research and translating the research into clinical practice. So I lived in New Jersey, I decided to apply at NYU and had a wonderful interview and expected to go into the acute care hospital like all new therapists. And the supervisor at the time said to me, how would you feel about going into our outpatient Vestibular clinic? And I said, Wow, I could I didn’t get much education in school on vestibular rehabilitation. It turns out the supervisor at the time, Tara Denham had just been interviewed by the New York Times about how physical therapist treat people with vertigo and dizziness. And they have an outpatient vestibular rehabilitation clinic that solely treats people with vestibular dysfunction. So their outpatient clinic of two therapists at the time went from a waitlist of maybe 10 At any given moment to almost 300 people because of the publication of that article, so they put five of us who are new grads into this outpatient specialty clinic who sort of were learning on the fly. The supervisors had a wealth of experience they were a part of, I would say a small community of therapists that nationally focused on individuals with vestibular dysfunction. So my opportunity to learn from them was incredible. And I actually reached back out to my program at Rutgers and asked if I could start teaching the content because I, I felt like understanding the function of the Inner ear was so paramount, especially as a physical therapist who uses exercise for rehabilitation, to understanding balance, understanding how we interpret the world around us. And so that got me into teaching. And then I… my first full time faculty position was at Emory University because they were looking for somebody to be a part of their faculty, new faculty clinic in their outpatient Vestibular program. And Susan Herdmen was the director at the time, who is really one of the champions of vestibular rehabilitation from a research and translation of clinic into clinical practice. So that got me involved in teaching full time. And now I work with Rick Clendaniel at Duke. So I’m sort of a groupie, like you both and I’m following around these experts, draining them of their knowledge.
Dr. Abbie Ross, PT, NCS 05:32
That’s funny. We are definitely Vestibular groupies, I will admit to that. And I had the pleasure of working with Tara Denham at the start of my career as well. So we have that in common. Thank you so much again, Dr. Hoder, for joining us today. Let’s get into our conversation. And as we alluded to VRT can play a really major role for patients with vestibular dysfunction. Can we start broadly and discuss what is Vestibular Therapy?
Dr. Jeffrey Hoder, DPT 06:01
So vestibular therapy, I would describe it to my patients, as a way for us to either make your system less sensitive, or make it more sensitive or make it calibrated to interpret the environment around you. So your vestibular system, you all learned about this, the first day is a small sensory organ. So it primarily just senses something about the environment and it senses motion, it senses acceleration and deceleration in different directions when we turn our head, and in different movements against gravity. So it pretty much answers two questions for us, right? So it tells us which way we are going and which way is up without needing any other sensory system to tell us that. So we don’t need vision to tell us which way is up. We can feel it internally. We don’t need to feel where we’re feeling pressure on the floor and our chair to tell us if we’re sitting in midline, we feel it internally. So vestibular rehabilitation is gosh, dating way back to the idea of when your vestibular system isn’t working correctly, Catherine Cooksey told us that doing something is better than doing nothing. So if you felt dizzy, and the dizziness got worse, when you moved, you should move more. And, you know, wonderfully driven by a lot of the research that Dr. Herdmen did, we can do better than just a shotgun approach. Your vestibular system primarily mediates two reflexes. It’s a sensory system that causes output to two reflexes. One is if your intention is to keep something in focus, that’s not moving. When you move your head, your eyes move in the opposite direction, they do that reflexively. So when I explain it to patients I say it’s like a steady cam. Right? So picture, you know, watching America’s Funniest videos way back in the day, and the cameraman would laugh, and the entire visual environment would bounce because our camera systems weren’t sensitive. Now we have image stabilization with our phones, and you can run and you can use your GoPro and everything stays perfectly still, we still haven’t technologically developed a camera system that is as good as our inner ear. So it keeps things in focus when we’re moving. The other thing it does is it tells us when we’re not upright against gravity if our goal is to stay upright. So if our goal is to stay upright, when we’re walking and we start to drift, our inner ear will trigger muscle actions in our leg to get us back to midline. But of course, there are times when we want to keep things in focus when we’re moving and the thing in focus is moving. Or there are times when we don’t want to stay vertical against gravity. So then another part of our brain, the cerebellum, the tiny brain is responsible for comparing what we want to do with what actually happened. And it has direct projections to our inner ear that modify these reflexes based upon what we want to do based upon when we’ve developed skill. So I can run and keep a baseball in focus and catch it and actually dive to catch it and still maintain some semblance of control. So rehabilitation is what happens when that sensory system is giving you inaccurate information. Well, there’s two organs that work in pairs. And so it makes it more efficient. So if I move in one direction, one organ is stimulated and the other organ actually quiets down. So by working in pairs, it makes our responses more efficient. Well, if one side is damaged, then we get the perception that we’re moving when we’re not. And when patients report that they complete, they report this abnormal sense of movement, that’s not real. And that’s what we would call vertigo. So either your environment visually looks like it’s moving, or you have this sensation of moving, sometimes even swirling around, that’s not accurate. The other thing that can happen is both inner ears get damaged, not just one. So instead of feeling like you’re moving when you’re not, you actually have really bad reflexes. So I don’t sense that I’m moving, I have nothing that’s sensing movement at all. So when I move my head, my visual world, everything gets blurry. I don’t have that image stabilization. When I walk, I don’t have a sense of when I’m vertical. So if I’m distracted, I might stumble or I might fall. So vestibular rehabilitation primarily focuses on what do you do when your system’s telling you the wrong information? Or what do you do when inner ear is not functioning at all. So the wonderful thing about exercise is doing more helps you get better. So your brain has a wonderful way, a wonderful system of checks and balances, to take that inaccurate information and determine what actually should happen and it sort of recalibrates any imbalance between our two ears. Or if you don’t have function coming from your inner ear, then rehabilitation teaches your other systems like your vision or that sensation that I feel I can feel if I’m leaning to one side, because I have more weight on my right bottom. You know, I can use my other senses to give me a better idea where vertical is, and I can make my responses to losing my balance quicker, even though my inner ear is not telling me which direction I’m going. So rehabilitation tries to personalize improving somebody’s quality of life based upon what we know about exercises specific for your vision, and what we know about exercises that are specific to restoring your control of balance, outstanding newer direction, and rehabilitation. You just keep going and going. Newer direction is understanding when our Inner ear is working. But we’re getting symptoms from our inner ear that we shouldn’t be getting. Right? So the idea of feeling motion when you get off a boat, and well, all the Inner ear testing seems to be saying your inner ear is working fine. Why do you still feel like you’re on the boat? Or why do you have this vague sense of not feeling like you know where your body is in space, even though your vestibular testing seems to be normal.
Dr. Danielle Tolman, PT 12:44
I think your keyword there was personalization or personalized, individualized, you know, you describe the whole host of things that can go wrong with that vestibular system. And luckily, with all the advances that we’ve made in research for evaluation, clinicians have gotten really good at figuring out where the area of dysfunction is and what exercises we need to do in order to make a person feel better either compensate, habituate, get them either less sensitive or more sensitive. So that’s a really great way of putting it it’s very counterintuitive to make somebody move in order to feel better with movement is probably one of the things that stirs everything up. So we know what kind of clinicians might somebody see for Vestibular therapy.
Dr. Jeffrey Hoder, DPT 13:29
So the other fortunate thing that I’ve been involved in is we have a really large vestibular rehabilitation course that we’ve coordinates are Emory University that Dr. Clendaniel directs. And for gosh, over 20 years now, we’ve attracted close to 200 therapists or 200 individuals, clinicians, to the course to train people on diagnosing, evaluating people with complaints of dizziness and imbalance and determining whether or not the vestibular system is involved. And I would say, you know, we’ve, we have physicians on our faculty, neurologists, there’s a subspecialty of neurology otology. So some neurologists that actually specialize in vestibular function of the inner ear. An otolaryngologist an ENT, is a physician that specializes in ear and throat disorders. So they may have advanced training specific to the Vestibular system, primarily diagnostically. But some physicians will actually work to start to rehabilitate people as well. And then I would say we’ve had audiologists, physical therapists, occupational therapists, you know, my lens is through physical therapy. I got involved through physical therapy. And I feel like physical therapy is a wonderful match because of the postural imbalance issues. And the fact that when people don’t feel right, when people feel depersonalized are feel like they’re moving in space or feel disconnected to understanding where they are in the environment. They don’t, they tend to do less, because it provokes symptoms. So getting up and just becoming more active in a daily walk is such an important part of the rehabilitation process. So I think physical therapists really are a wonderful resource for that. Occupational therapy has a little bit more advanced training in eye movement, and maybe some behavioral management and a physical therapist might. So Occupational therapists, I’ve known with incredible amounts of experience, as well. And then audiologist might, absolutely has more training to cochlear issues or hearing issues associated with the balance deficit. So if you’re somebody who has an additional problem of hearing that might be a wonderful resource for you. So I don’t you know, I think the wonderful thing about rehabilitation is it spans across professions, the whole it takes a village. I didn’t even mention psychology, you know. So behaviorally, psychology becomes an important part of convincing somebody who doesn’t want to become symptomatic that it’s a part of the recovery process. Our inner ear has projections to the centers of our brain that are responsive to stress and nausea. So if I give you exercises that cause stress, and nausea, sometimes it’s hard to convince people when it’s associated with anxiety. If your brain doesn’t know where you are in space, it wants you to shut down, right? So it’s going to make you sick, it’s going to give you a panic attack, it’s going to give you a strong memory of that event, so you don’t do it again. So a lot of our patients that we work with have had a trauma or an emotional trigger related to the onset of their symptoms. So working with psychologists working with people that focus on meditation, and grounding becomes a wonderful complement to what I do as a physical therapist. So it takes a village, but I would really want to know what kind of specialty training the person has, how many individuals with vestibular dysfunction do they see on a regular basis? Yeah, and sort of, I would carefully choose providers and not make a blanket statement that it doesn’t work based upon an ineffective experience with one provider.
Dr. Abbie Ross, PT, NCS 17:35
That’s a really good point. So essentially, multidisciplinary approach is very common in this field, you might see a physical therapist, you might see neurologist, you might see a psychologist all at the same time. And I do want to point out that VEDA has a healthcare provider directory on their website. But it is good even when you’re looking at that directory to ask some of those questions that Dr. Hoder just mentioned, you want to know about training, you want to know what percentage of their caseload are patients with vestibular dysfunction like you when you’re scheduling your appointment. So when we think about seeing a vestibular therapist or another clinician, what could we expect from let’s say, our initial session? What kinds of questions Why might we be asked what types of tests and measures might we be put through? What are they looking for?
Dr. Jeffrey Hoder, DPT 18:27
Well, so they’re gonna ask you to really describe your symptoms, alright, so dizziness can be related to a slew of conditions. So the complaint of dizziness could be that you’re having issues with your blood pressure, it could be cardiac in nature, it could be related to breathing and something with gas exchange in your lungs. It could be related to anxiety, it could be a behavioral problem that manifests as dizziness. Dizziness related to vestibular dysfunction tends to be this abnormal sense of movement. So we want to know, how are you describing your symptoms, we may ask multiple questions or give multiple screening tools to better understand your symptoms. And then we want to know what makes you feel better and what makes you feel worse, what provokes your symptoms. So with regards to vestibular dysfunction, usually movement can make it worse, usually being in the dark, or on surfaces that don’t give you accurate information. So I take away two of my other senses that are telling you about the world around me my vision, and what I feel through my, my, my skin, my in my body. If I alter those senses and my symptoms get a lot worse, then maybe there’s a vestibular problem. So they want to get to what are your actual symptoms, and what is the time temporal pattern or how do your symptoms change over the course of a day or a few weeks? And then over a longer period of time? What did it look like when it first started? And how has it changed over the course of days, weeks, months years, because that can sort of help guide us to what could possibly be wrong. Some of the more ambiguous diagnoses three PD, or related to migraines, sort of, we can sometimes get to those diagnoses ruling out other things, or we look at the timeframe of recovery. And if we know the rest of your brain is functioning well, most inner ear disorders will show some trajectory of improvement over time on their own. So we tend to see people in rehabilitation with more chronic issues where it’s just not getting better. And we know that with the exercises and the targeted approach, we can get a good idea, usually within a few months, if the type of therapy and the type of approach that we’re using is going to be beneficial.
Dr. Danielle Tolman, PT 21:09
That history and I
Dr. Jeffrey Hoder, DPT 21:10
And haven’t even talked about BPPV. Right. So I’m talking more about whether one entire organ is damaged. But I’m happy to talk about BPPV to.
Dr. Danielle Tolman, PT 21:23
There’s a whole spectrum of things, right. So you know, starting off with a really good history about what is going on is key to a good evaluation. So, you know, in the office, whether you’re seeing somebody who’s ordering testing, like a VNG, or other vestibular function test, versus, you know, that side evaluation, your therapist might put you through different positions, move your head certain ways, or have you looked to see how bouncy your vision might be with certain motions and movements, while reading eye charts, there’s a whole slew of things that might happen, depending on what your history looks like, and what it sounds like, could be going on that sound about right?
Dr. Jeffrey Hoder, DPT 22:03
Right. So they’re gonna look at when you get to the clinical exam. So that’s the history and then the clinical exam is what are your eyes do first, when your head isn’t moving? What are your eyes do when your head is moving? So that’s more of a clinical exam, then they’ll want to see functionally, what are your eyes do when your head isn’t moving? How clearly do you see? And then how clearly or how does your vision change when your head is in motion. They’re also going to look at your balance and postural control under different conditions. Primarily, as a clinician, we’re constantly trying to rule things out just as much as we’re ruling things in and we want to make sure the centers of your brain that coordinate eye movements that give you information about vision are working. Because if the part if your brain that’s controlling your eye movements isn’t working, then when your vestibular system, which is a sensory system tries to use your eyes system, it’s not going to give you accurate information. So as a clinician, we want to make sure are your eyes moving properly? Are you seeing things properly? Do you know where your joints are in space? Do you have any issues related to strength in our imbalance are structural issues that can’t be explained by a vestibular dysfunction? Because the vestibular system just uses your body and your eyes as an output once it interprets information around them. So we want to make sure everything else seems to be working that we can’t explain it because something else is wrong.
Dr. Abbie Ross, PT, NCS 23:40
So we get through the history, we look at the examination, and we now have a pretty good picture on what’s happening with this person, what symptoms they’re experiencing, what makes them worse, what they’re doing well at what they’re not doing so well with in our examination. How do we then piece together what we found at that initial session and come up with an exercise program? How are we determining what’s appropriate and not so appropriate for this patient to start?
Dr. Jeffrey Hoder, DPT 24:09
So I guess we try to get a rough idea of what we think is going on. Are the systems that control eye movement that my movements that give you information about your balance that aren’t related to the vestibular system? does everything look like it’s intact? If it’s more specific to the vestibular system? Is it because both sides aren’t working? One side isn’t working, or it’s working too much. So we focus our approach on primarily, you know, you brought up before the idea of habituation, adaptation or substitution so globally, if we just look at approaches for somebody who gets off the merry go round and feels like the moving, right? Vestibular system worked because they sense the movement, they got off and they feel horrible, because they don’t know how to shut that information off. So usually somebody that’s motion sensitive, their vestibular system, or the vestibular tests are completely normal and they’re just too sensitive to vestibular input. So we do an approach called habituation. It’s the idea of down regulating your body’s response to that sensory information. So it’s great at exposures. When you have anxiety, and you go into a crowd, if you just avoid the crowd, then anytime you go into the crowd, it’s going to make you anxious. So we try to give you predictable graded exposures, we try to turn on your system and show you that you can control turning it on, and then get you back to normal, and then turn it on a little bit more, get back to normal, turn it on just a little bit more get back to normal. So habituation tends to work incredibly well for people that are motion sensitive, or that maybe they have migraines. And either during or after a migraine, they have this persistent sensation of sensitivity to movement, in the absence of a vestibular deficit. If one side is damaged, then your vestibular system is sort of crooked, right, so one side is damaged, so your body feels like its moving. When it’s not, your brain can should correct for that on its own. So if you stop moving over time, your brain shouldn’t feel like you’re continuing to move. But then when you go to move, because the information is an accurate, your brain misinterprets that information. So if I move too fast in one direction, I may stumble more in that direction. Or if I move too fast with my head now, even though my vision was still when my head was still now if I move too fast, everything gets blurry. So that’s a situation where we have a system that’s weak, but it’s there, you still have one of your ears working, we just want to get it stronger. So we used to turn that adaptation, your brain is capable of adapting, think of plasticity your brain is a key is capable of adapting, correcting that imbalance and restoring function. And then finally, what if both sides are completely damaged, it can happen sometimes with really bad viruses over time that affect both years, it can happen with certain medications. Now your inner ear isn’t working at all. So we can give you exercises and work on your balance to train your brain to function in the absence of one of its primary sensory systems telling you where you are in space. So if we have an understanding of what’s the underlying problem, we can grossly categorize people in these three buckets to see what would tend to be the most effective approach. A lot of times, we’re not quite sure, think of a concussion, right? So a concussion can affect your musculoskeletal system can affect your brain, and it can affect your inner ear. So trying to figure out which is affected the most or is it just your brain having trouble putting all of this information together. So we really individualize our approaches. And a good clinician will give you some exercises teach you how much to do, how to avoid doing too much. Because if you do too much, and you feel horrible and shut down, that’s not effective. And then how to progress yourself, or regress yourself if you’re being too aggressive. So it we’re trying to work with your brain to recalibrate you and fine tune things which requires an approach where we’re working with people over time. And then finally, if we find out that you have BPPV. So this idea that you have a part of your inner ear is sensitive to gravity. To be sensitive to gravity, it has to have some sort of rock or weight that shifts depending on your position against gravity. So sometimes these rocks that tell us where we are and move or shift when we tip our head that are important for our inner ear telling us like a carpenter’s level when we’re upright. If one of those rocks gets stuck into one of the canals, and the canals are only supposed to help with rotation to keep our eyes steady, then when I lie down in bed, the rocks trigger this sense of rotation and eye movement, which it shouldn’t do when I just lie down in bed. So John Eppley was this pioneer that said its rocks in a tube and these tubes are oriented in very certain ways in your head. So if I get you to slowly roll or move in different direction I can put the rocks back where they belong. And people thought he was crazy. And now it’s such a part of clinical practice of how we identify where the rocks are based upon putting you in certain positions and seeing if it triggers the sense of vertigo. And then having you roll or move in different positions to try to put them back where they belong.
Dr. Abbie Ross, PT, NCS 30:23
One thing that you said that really spoke to me was that, you know, really, we’re relying on the patient’s feedback to determine which avenue we’re going down. So if you’re a patient listening to this, you’re all the information you can provide your therapist or whoever you’re seeing at your sessions is so important in determining do we progress this patient? Do we keep them the same? Do we regress? Do we take this exercise out completely and go down a different route. So that part is so key to the treatment approach, it’s not cookie cutter, it’s not one path fits all. It’s like this, it’s different avenues and up down all around. So very good.
Dr. Danielle Tolman, PT 31:04
Another unique aspect, I think, to vestibular rehabilitation therapy is that it is not no pain, no gain type of approach. You can absolutely overdo it. And I think that’s where a lot of patients have bad experiences in certain clinics or situations where they really push push push more than they should, and it creates that shutdown type of a feeling and certain symptoms that you were talking about before. But there’s a whole host of things that people can be treated for especially we’ve been talking a lot about inner ear related issues. But what about people that have symptoms due to maybe not directly Inner ear related issues like cervicogenic dizziness, or, you know, visual dependency from things like migraine.
Dr. Jeffrey Hoder, DPT 31:48
So a couple of a couple of clinical examples I’d give you so one of my early patients that I was working with at NYU had one vestibular test that could have been deemed as slightly abnormal. So whenever you get these vestibular function tests, or VNG’s, so they’ll put pads around your eyes, or they’ll measure eye movements with a tracking system to see what are your eyes doing first, when your head’s not moving, and then tracking eye movements when your head is in motion. And they’re calibrated to a sense of understanding what normal should be. And normal tends to be pretty variable in the human species based upon what we need to do. There are also different tests that’ll sit you in a chair that will spin you around and also measure eye movements, or test that you stand in an environment that could manipulate your ability to stand up, right? So so those tests are trying to give us more objective information than what I could give you as a clinician just watching you do some different tests. Well, what about those patients that there may be, there’s something I’m not quite sure. And I was working with an individual that had this profound history of anxiety, and depression, and fear of going out doors and was reading a lot of information on vestibular symptoms and felt like there was a match, because this feeling of depersonalization, this feeling of not connecting to what my body is experiencing. And it actually gets worse when I’m in really busy environments. So we dealt with most of my testing was normal, but we were able to put him in situations that provoked symptoms. So it empowered him to control his symptoms and how he could dose it. And I was working in New York City, I mean, this is a sensory overload of an environment. And he, you know, as a graduation from his last session, walked across the Brooklyn Bridge, and for him, it was just this milestone. And we were able to work with his insurance company and say, Look, I’m going to try this for a specific amount of time, because he had gone to so many different providers that weren’t effective. And either it should work over the course of this is certain period of time or it doesn’t. Because there’s such a huge behavioral component to it. Sometimes it doesn’t work. And as clinicians, we feel really frustrated too, right? So no matter you know, the three of us here, no matter what type of experience we have, there are those cases where we reach out to our colleagues and yell for help. Am I doing something wrong? You know, I’m really listening to the person and sometimes what we’re doing just isn’t effective. But the majority of time, it’s what happens when you’re not in front of us in the clinic, because we can’t control that. So if I’m asking you to do exercises that provoke symptom and people don’t do it, or I’m teaching you ways to progress the exercises, because now you need to work a little bit harder than you did. And people aren’t doing it, it just doesn’t work. And I don’t judge, I just say to somebody, if you’re not ready to commit to this right now, then then you know, we have to find something else just for you to manage on the day to day, but when you’re ready to know that you need to do exercises, the research shows us three to five times a day of these small, little exposures over multiple episodes at a time. If you can’t commit to that now, then I’m not saying what I’m going to do is being effective. I equate it to being a physician, right? So if the physician says this is the problem, right, this is the medication I’m going to give you. And I think the medication will help and you go home, you don’t take the medicine, you’re not you can’t blame the physician for it not getting better, and as a physical therapist our medication is these exercises that we know. So you need to take your medication if you expect my role to cause any change in this.
Dr. Danielle Tolman, PT 36:05
And with that being said, sometimes two, combining multidisciplinary approach might not have a great effect for people with vestibular rehab. So, you know, you sometimes see that in combination with cognitive behavioral therapy or medication such as antidepressants, is that a little bit more effective with vestibular therapy at times?
Dr. Jeffrey Hoder, DPT 36:25
Absolutely. Right. So a lot of so, I’ll give you an example of like Antivert as a medication. So Antivert is what we call a CNS depressant. So basically, it makes your system less sensitive to sensing things. And for some patients, it makes their dizziness go away. The problem is, it makes your central nervous system less sensitive. So with those types of medications, for motion sensitivity, Dramamine, Antivert, it says do not operate equipment, do not go driving, your eye movements might be delayed, your balance is likely going to get worse. So any of these medications that are looking to desensitize your system, there’s this side effect of well, maybe it’s putting you at risk for more falls, because your system is going to be just a little slower. Medications that are targeting anxiety and depression may be wonderful complements to vestibular rehabilitation, because you have an event that triggered and anxiety, a stress related response, this fight or flight response, and it also maps it to your memory, so that you have a profound memory. If any of us don’t like to be on merry go rounds, you could probably remember the first time you were on a roller coaster merry go round, if you got sick, if it got you that far, you have a profound memory of that event. And it makes sense, right? If your brain doesn’t know where you are in space, and it wants you to stop, it doesn’t want you to do that again. So when I’m explaining therapy, and I’m like, so I’m going to provoke your symptoms, but it’s ultimately going to make you feel better. And it’s going to remind you of how bad it was when it first happened. You know, we want these tiny, little exposures. And within a reasonable amount of time, most of us say 20 to 30 minutes after you finish your exercises, you kind of get back to your baseline. Because if you decide I can’t do it three times a day, so I’m going to take all of the exercises and do them at lunch. And then for two hours, you’re like what am I doing? Just like taking medication, if you needed to take a medication several times a day, let’s say something like Parkinson’s disease, you can’t just say you know what, it’s annoying to take it three to four times a day, I’m just going to take it all now and not expect for you to have a side effect. So similar to exercise, we’re giving you a very specific dose. And based upon that dose, we need to modify it. If you don’t take it properly, it’s hard for us to know what’s effective and what isn’t.
Dr. Abbie Ross, PT, NCS 39:03
And this is all based on research, right? They aren’t arbitrary numbers that therapists are pulling out of the sky. This is all based on research. So one of the questions that patients often want to know, although we don’t have a crystal ball, we can somewhat make generalizations How long is this going to take? How many sessions do I need? So if we think broadly peripheral versus central, can we give some sort of generalizations?
Dr. Jeffrey Hoder, DPT 39:30
Sure. So the treatments for positional vertigo, okay, should resolve over the course of two to three treatments, or we have an idea of what we’re doing is working. It doesn’t mean it can’t come back. Something like positional vertigo. We don’t understand why some people we treat it once they never complained about it again, some people we treat them once and it comes back a few months later or a few weeks later. We’re getting a better idea of maybe some things that would suggest predicting that. But we still don’t have this hard association of who’s more likely to get it. It does get worse as we get older. I’ve had BPPV, it’s horrible. With regards to bilateral vestibular loss, really the work that Dr. Herdmen did a long time ago still holds true. And it is really informed a lot of our clinical practice guidelines and physical therapy on the management of people with vestibular dysfunction. So what she did was she took people with loss of both ears or damage to both years, and people with damage to one year, put them all in a group of ending work in very specific exercises, to improve their vision, when their head is moving, and their balance when they’re standing still and when they’re moving through different environments. And she found that the majority of people who had damage on one side got better in four to six weeks, and she saw people once a week. So these were patients or subjects really for the study, that were doing their exercises, as prescribed three to five times a day, most with bilateral loss saw a pretty significant change in the course of two to three months. That does not mean some people take longer. There was somewhat of a correlation to how long somebody had the problem with their trajectory of improvement. So those that had more of a sudden onset of an event, more recently tended to improve a little bit quicker than people that have had this issue for a much longer period of time. So as a clinician, if I’m treating somebody with positional vertigo, and I’ve done maneuvers over the course of three or four sessions, and they’re not improving, I got to step back and say, What am I doing, I might need another resource or to your point, Danielle and Abbie, you know, it takes a village, maybe we need somebody to manage another element of this, or maybe there’s something else going on in the brain that I’m missing. If they have a vestibular loss on one side, only, then I would expect to see change if exercises were done as prescribed over the course of one to two months. And that seems somebody generally once a week so that I could modify and fine tune their exercises over that course of time. If I’m seeing somebody with bilateral loss over the course of several months, I should start to see improvements. If it’s vestibular I should see improvements to their ability to keep things in focus when their head is moving and their ability to sustain upright during static standing and when they’re traveling through space. And we can’t control the environments that people function in, you have to function in those environments that you need to function in from a day to day basis. So somebody who was moving through environments where there was no obstructions, no movement, versus somebody in New York City who needed to walk to work every day that might change that time course to recovery, based upon their ability to navigate environments that were very symptom provoking. Does that give a reasonable idea? What we know about things like 3 PD and vestibular migraine? There’s much less of an idea of how long it’s going to take. So three PD is this, this idea of this persistent postural perceptual vertigo or disorder, where persistent it’s lasting more than several months, it’s related to your postural control where you are in space, and it’s a perceived disorder. So most of your sensory systems that we’re checking seem to be working okay. There’s likely a need for a behavioral intervention or something to address this, this fear driven response, something to address your brain learning to filter out extraneous information and prioritize certain information so it doesn’t feel overwhelmed. Sometimes they can take longer.
Dr. Danielle Tolman, PT 44:21
So I think it’s safe to say that you know, vestibular therapy, especially in combination with other multidisciplinary approaches can be great and help improve symptoms. In some cases, like BPPV, you might resolve symptoms completely and manage recurrences as they pop back up. In more chronic cases, for people that have vestibular dysfunction or multiple vestibular issues at once. It might be more of improving quality of life and dealing with some residual symptoms for an unknown period of time. You know, we talked about the importance of doing the singular therapy consistently but, is it something that you can overdo? If there is so somebody wants to do their exercises every single day for the rest of their lives. Is there any downside to that?
Dr. Jeffrey Hoder, DPT 45:07
So your inner ear doesn’t work in isolation, it works with the rest of the parts of your brain. So specifically one part of your brain the cerebellum, love it. It’s it means little brain cerebellum. I wanted to name my daughter, Sarah Belen Hoder, but my wife wouldn’t let me do it. So it’s this wonderfully complex part of our brain that compares what is actually happening to what we want to happen. And it triggers our, our physical responses to try to improve our movements improve our skills. So your cerebellum works a lot with skill acquisition, when you’re first learning to do things. With regards to your inner ear, it does a better job of changing or improving small graded exposures or small errors that occur over a long period of time, versus one huge error, large errors your brain ignores, right. So if I walked outside, and it was icy right now, and I slipped and wiped down on the ice, I wouldn’t get better balanced the next time I walked on ice, my brain basically said overload too much, you got to stop doing that. So what we want is we want to see that we’re causing error we’re causing an error would be that you become symptomatic. An error could be that when I’m looking at a letter, the letter almost moves a little bit. An error could be when I’m doing a balance exercise, I’m swaying, it’s hard for me to do the exercise. If the error is too large, I’m turning my head at a letter and the letter is jumping back and forth. I’m doing a balance exercise and I keep grabbing the wall, then my brain says you know what your system failed you. And it’s less likely to improve that reflex because it was just too big a response. So we want to provoke symptoms, we want to give your brain error in really small doses. And then the cerebellum does the best job when it occurs on multiple, multiple episodes over time. So if we got you to walk across ice 20 times a day, and you learn, alright, I’m slipping, but I’m learning how long my steps are, how fast I can walk, what type of shoes I could wear, your brain is more likely to improve your system under that circumstance than just to say, you know what, just keep going out there and walking across the ice until you stop falling. A fall means your system failed. We don’t want to push to a fault. We like sway because your system is fighting. We like tiny movements of a letter or just working to the point of where it’s challenging to keep it in focus. But if it’s too big, your system didn’t work.
Dr. Abbie Ross, PT, NCS 48:18
Challenging, but doable is a phrase I like to use with my patients. Right. I’m going to combine a couple questions from our audience here. The broader question is, are there any contraindications to participating in vestibular rehab? And the second part of that is if I have uncontrolled vestibular migraine, do I need to get that addressed first, before I participate in therapy,
Dr. Jeffrey Hoder, DPT 48:44
So migraine, and so in clinical practice, we call them red flags. So a red flag is when I’m doing my examination, and it’s something that says stop. Something else is going on right now. And based upon what is telling me to stop, I have an idea of how serious it could possibly be. So knowing the test findings, as I’m going along is incredibly important. So if I’m looking at your eye movements, your head is not moving. And I see really severe deficits to eye movements. I know it’s another part of your brain that’s not functioning properly. It’s somewhere between your brainstem and the cerebellum that I described this tiny bank brain in the back has nothing to do with what I’m doing. If it’s something that’s known, right, so you’ve had this your whole life or you’ve seen a neurologist and it’s known, well then I can take that into account. Alright, so it’s known that if it’s not known, I need to stop and have somebody get more of a workout. So a lot of times as a physical therapist, I’ll refer somebody back to their primary care doctor they’re in or neurologist to get a better workup to make sure nothing’s affecting the rest of the brain your inner ear is using, or your brain, uses your Inner ear as a sensory system to interpret what’s going on. So if other parts of that system, um, how you’re moving your eyes or how you’re feeling and controlling your body are damaged, I need to understand that at a better level before I start stimulating your inner ear. Things like migraines. Migraines can be a vestibular migraine can be provoked by the exercises. Right? So a migraine, what we understand is more of like a vascular event, it’s a sudden onset of these symptoms; sometimes we can correlate what causes it. Alright, so for some people, it could be stress, for some it could be diet related. For some it could be environmentally triggered. So we want to really control what the trigger is. So for somebody that has uncontrolled migraines, we need to work with a specialist, a migraine specialist to get those under control. And then if you have the additional motion sensitivity, or the additional vestibular dysfunction, then we can deal with that. But until we get a better handle on something that is less controlled, or more randomly provoked, it could be really hard to work with somebody and understand did the exercise cause your symptoms? Or did you just have another migraine? Or did the exercise cause the migraine, it’s too difficult for us to parse out how to dose those exercises properly.
Dr. Danielle Tolman, PT 51:44
So understanding that, you know, patients need to have a stable presentation, something that’s not evolving and changing and throwing up those red flags or stop signs for clinicians, after they were evaluated and getting an individualized approach to this to their therapy, you know, that’s something that is going to be taken into consideration when being evaluated. Absolutely. Looking at our chat, here are our questions is, you know, somebody asked can life be therapy, I go to a store every day, walk in the mall, take my kids to places and I’m so tired at night or during the day, it’s hard to make myself do visit their therapy. So are there ways that we can introduce exercises into our everyday life?
Dr. Jeffrey Hoder, DPT 52:21
Absolutely, so it’s graded and controlled exposures, right? So what we’ll say to patients, if we gave you an exercise that has you walking up and down the hall and turning your head, right, so my, my favorite response is, I look like a fool. I don’t want to do this at work, or they’re doing their exercises in the bathroom because they just feel ridiculous shaking their head at a letter, I’ll say, Well, what’s supposed to happen is you walk down an office hallway, and you’re able to turn your head and look in and out of rooms and keep your balance. It’s important for us because we turn our head to sound to noise to movements reflexively for protection. And if turning your head really quickly causes imbalance. That’s one of the exercises that we do. So be the nosy neighbor. As you’re walking down the hallway, I want to see what everybody’s talking about. I want to see what’s going on in every room. And if somebody looks at you just smile and wave, we sort of lost that, I guess you don’t see the smile as much. But soon, we’re almost there. So if there’s a way to incorporate the exercise, that still gives you control, right, so that’s not causing you to shut down because you’re being overloaded do that if you could do your walking exercises at the supermarket, well, that’s very functional. I need to walk down the aisle and scan and read different items. That’s the whole purpose of doing those exercises. Maybe go mid-morning, or really late at night at a time that you know less people are going to be there. Because the more complex the environment, the more challenging it is for your brain to organize information to navigate it. Walking in the head turning thing, well, if you could walk outside and quickly turn your head around and look at things you know try to read the advertisement on the bus as it’s driving away. Try to do it first standing still try to do it while you’re walking, read street signs. All of those are really working on the eye reflex and your postural control. You don’t keep doing exercises to the point of perfecting the exercises. You keep doing the exercises to the point of being functional. When we teach people, when we teach students the exercises. Now like I get dizzy, I got to go home and do all my vestibular exercises. Are you able to function with everything you need to do and not have symptoms? Well then you don’t need to do the exercises. So some people say I still can’t stand the eyes closed on one leg or do you have any functional complaints? Your system up regulates itself for you to be functional. It doesn’t upregulate itself to be perfect on these exercises.
Dr. Abbie Ross, PT, NCS 55:09
Yeah, Life is one big vestibular exercise. It is I would encourage you to have that discussion with your therapist too, because like we spoke about in terms of dosage, you can overdo it. So paying attention to how you respond to whatever activity it is, can really help your therapist guide you whether or not you need some modifications to start, you know, as you’re at the grocery store and then build up to the fully functional I’m going to the grocery store. I’m not modifying anything, I’m doing it as I normally would. Another question which I think is a good one. This particular patient has three PD was diagnosed with three PD they tried therapy several years ago kind of plateaued and was discharged. Their symptoms haven’t really gotten any worse over the several years have been out of therapy. But could resuming VRT or trying different exercises, maybe a different therapist altogether, bring greater improvement.
Dr. Jeffrey Hoder, DPT 56:07
Great question. So three, three PD, their persistent postural perceptual dizziness, I want to make sure I read it correctly. Because sometimes I change the order. Like I was saying before, we tend to take this approach of trying to make you more functional, challenging your balance, challenging your ear system, while working with maybe other providers to teach your brain to quiet information that it doesn’t need, so that it’s not as easily overloaded in certain situations to reconnect your body, to interpreting the environment around you and to being successful about moving and navigating the environment around you. So what we know about vestibular rehabilitation is it requires you to continue to function at a certain level, or likely the gains that you made, you’ll feel yourself regress. So the example that we would give in NYU that I’ve sort of carried with me is it’s like a dental model, right. So sometimes we would follow up with people every six months or a year, just to make sure that they didn’t regress in their symptoms, we all want the fix, right? We all want the, alright, this is a lot of work for me, if there’s no way I can do this over a long period of time. But we want you to stay at a level of activity that meets your needs. If you got really sick, you had a cold, and or some other illness that required you to be bed bound or inactive for a certain period of time, it’s likely if you had inner ear damage; you might experience some of those symptoms, again, because your brain has stopped really working at the level that you had gotten to. So we encourage you to if you’re comfortable doing it to maybe go back to some of those exercises, it’s highly likely that you don’t need to do them as long or at the dose that you needed to do when you started, you should recover a little bit quicker. But there’s nothing wrong with going back and doing some of those exercises, or activities. Maybe it was yoga, maybe it was meditation or mindfulness that really did a nice job of recalibrating your system. So I would say especially those exercises that you feel really, really work, prioritize those and figure out ways to incorporate them in your daily activity. And then expect if you get away from doing daily activity, you might need to re-engage in some of these to sort of tune your system up again.
Dr. Danielle Tolman, PT 58:57
So is there any downsides, maybe somebody who is discharged from therapy, maybe going back in a year and getting a refresher and just kind of making sure that everything is still operating the way they should maybe getting exercises progress? Is there any downside to that? Do you recommend it?
Dr. Jeffrey Hoder, DPT 59:14
That I recommend it? I mean, so from a physical therapy perspective, it has taken us a long time to get direct access. So I use the example of physical therapy in Australia. So a lot of people in Australia use their physios as like a primary care doctor, so that they’ll do a visit once a year they’ll do a check in. Can you retest me? Can you look at my balance? Can you look at, you know, my strength, my coordination, to make sure I’m doing everything to sort of stay tuned up, like going to see a dentist and vestibular rehabilitation, we try to encourage the same thing, particularly if we know that the parts of your brain that fix the problem are also damaged. So you talked about peripheral versus central In the very beginning, so a peripheral problem means that it’s just the sensory organ of your Inner ear. That sort of canal that you see, or, or this part of your Inner ear that senses where you are in space, it’s only the size of a dime. If we know that’s damaged, and the rest of your brain that fixes it is intact. Generally people do really well. But if the parts of the brain that fix the problem are also damaged, then I never, when somebody is ready for discharge, I never say goodbye. I say alright, so recognize that there might be times where you’re feeling yourself regressing. And instead of panicking or feeling like this sense of doom, come on back. And it might be that we need to re change what you’re doing exercise wise, or there might be an opportunity to revisit some exercises that you used to do. Maybe not as many will be a little bit more selective. To get yourself tuned up again, if we know that the person has a condition, that’s degenerative, that is going to change over time, then we encourage you to have regular visits to try to stay ahead of
Dr. Abbie Ross, PT, NCS 1:01:16
Yeah, I totally agree. Dr. Hoder. This was an amazing talk today, I would like to take about the first 10 minutes when you describe what is VRT and have it played in waiting rooms across the world because it was so good. So thank you so much for joining us. We are going to pass the talk off to our patient panel, which is going to be led by Laura Cala.
Dr. Danielle Tolman, PT 1:01:41
Thank you so much, doctor. That was just absolutely amazing. Hi, Laura. How’s it going?
Laura Cala 1:01:48
Hello, how are you? That was an amazing session.
Dr. Danielle Tolman, PT 1:01:51
I feel like we could have talked for another hour.
Laura Cala 1:01:56
Oh, absolutely. I feel like I could have listened for another hour. It was just such a helpful session.
Dr. Danielle Tolman, PT 1:02:01
Absolutely. Well, we’re excited to pass the torch off to you and your patient panel. Thanks to everybody for joining in for day three. We can’t wait to talk more tomorrow.
Laura Cala 1:02:16
Hi, everyone, just before we introduce our amazing patient panel, my name is Laura Cala. I am based in Australia, and my diagnosis is vestibular migraine. So, I can see our amazing patient panel being loaded in. We have David and Vinisha. Hope I have said that correctly. Wonderful. I might pass it across to you, David, to just introduce yourself first, and then we’ll kick off to Vinisha and kick off our questions.
David Morrill 1:02:45
Hi, everyone, and great seeing you again, Laura. Thank you very much. And Vi, nice seeing you also. My name is David. I am a Vestibular patient, and my Vestibular diagnosis is a little different than most. Mine is from complications of stroke. So, if you just heard Dr. Hoder talking about the central part of your brain that is damaged, that is what happened to me. So, I have a continuous unbalanced and dizziness problem that cannot be fixed because I have brain damage, but I can cope and challenge it. So, I’m glad to be here today with all the panelists, and hopefully we can help others along our way. Thank you.
Laura Cala 1:03:26
Absolutely. Vinisha, can I get you to introduce yourself as well?
Vinisha Huwer 1:03:30
Yeah, absolutely. Thanks so much for having me. Very nice to meet you, Laura. And always good seeing you, David. So, my diagnosis really came about a year and a half ago. I suffer from PPPD and then also Vestibular migraines. Surprisingly, mine just kind of came out of nowhere. It wasn’t, you know, from trauma. So, definitely was a tough journey to understand why. But much like David, I also have the constant swaying, something that’s not intended to be fixed from what I know, but it’s something that you – that I’ve learned to cope with.
Laura Cala 1:04:07
Wonderful. Now, we’ve just had an amazing session. We’ve learnt about VRT. How did you both learn about VRT? VRT was something for me that I learned at the very beginning over here in Australia. I was diagnosed like Jeffrey Hoder had said in terms of being diagnosed by a physio and then being moved across to a neurologist. David, where did you learn about VRT?
David Morrill 1:04:34
Well, so, because my diagnosis is a little complicated, it came about on a back way and kind of what happened was, of course, I had a stroke. So, I’m rehabbing from a stroke, and they were doing all the normal things that you rehab from a stroke. Was trying to get my legs and arms healthy on the bike and on the, you know, the weights and everything. But I just kept telling my therapist that really, I’m really just dizzy and off balance. The rest of me seemed fine. I never had a stroke. So, I wasn’t sure. But so, I was taking their advice and doing what they said. And then finally I met a therapist that kind of just sat me down and said, “David, you know, you don’t seem like you’re doing that well. What would be the number one thing that we can help you with?” And I told him, “If I could help get some of my balance back and some of this dizziness to clear up, I probably would feel 100% better.” So, he stopped all the other exercises that I had going with my stroke rehab and said, “Let’s just concentrate on your balance. And we’re going to do specific exercises that help you with your balance. And we’re going to do them two to three times a week. I’m going to give you some homework. You’re going to do some at home. And then we’re going to come back, and we’re going to test you every couple of months and see how you’re doing.” And the process started out really slow. But as the months went on, you definitely could see the progress from my – just like a report card. I had, what I was like when I first got there, and then what I had in a month, two months, and then finally, you know, three or four months down the road, I was doing much better. And he kind of released me to do my homework at home all the time. So that’s how I first learned about VRT. Yes.
Laura Cala 1:06:18
Amazing. And Vinisha, how did how did you learn about VRT?
Vinisha Huwer 1:06:21
Yeah. So, also kind of a crazy journey, right? I think a lot of us that suffer from Vestibular issues end up seeing a plethora of doctors and specialists, ultimately. So, I’m in Ohio, Columbus, Ohio, and I went to see Dr. John Oas as part of the University Wexner Medical Center. And there’s a clinic, so to speak, right? Like, not a physical clinic. But there’s a clinic of specialists and the VR. And that’s where I learned from VRT. So, I started seeing a physical/vestibular therapist there. I would go twice a week. Just like David said, you know, you start to notice the progress. I was to the point where I was actually walking with a cane because I felt so unsteady. So, seeing that, over the couple of months, improve – letting go the cane, feeling confident and walking – you just, I just saw the progress. Same thing, you know, I would come home, do my homework, do exercises. Things that you, as someone that doesn’t suffer from Vestibular issues, you don’t really, you know, understand. Like, why are you staring at the wall and shaking your head? It doesn’t make sense. But it is crucial for patients like us to keep up with those exercises. So that’s how I learned about it. And I went through the entire clinic along with a rehab psychologist that was also part of the clinic itself. And it has been life changing.
Laura Cala 1:07:47
And now, the big question, and I know they talked about this before, but I guess it’s that magic pill answer: how long is it going to take me? When am I going to get better? I guess we get to that stage in our Vestibular journeys, where I know for many of us, we are so desperate at that time of initial diagnosis, that we’re just so ready for answers. And what I do want to add to everyone is that David has this amazing group on Facebook. And I remember finding his group at the very beginning of my journey and scrolling through and pretty much finding those resources and learning about other people’s experiences. So, I know we’ve talked about in days gone past that everyone’s journey is obviously a little bit different. And there’s not necessarily a set time, but we’d love to hear how long it took you to recognize that VRT was working. Can I pass that to you, David?
David Morrill 1:08:49
Sure. So, VRT, yeah. It’s a difficult situation sometimes, because you’re going through a lot of things at one time: you’re trying to get better, and you’re trying to do it quickly. And one piece of advice that my therapist gave me is if you try to do something in therapy too quickly, which – because I did. I was one of these people. I wanted to get back, get back, I tried it too quickly and too hard. And I actually had a setback. So, if you try to do it too quickly, then you’re going to have a setback. So, don’t try to do that. But for me, you know, I started like Vi. I started going in to the therapy when I was in a walker at this time because I couldn’t physically walk. I couldn’t use a cane; I had to use a walker. So, eventually, I got out of the walker. I was supposed to go to the cane level, but they kind of skip that level. And I just went to walking. So – and it took a few months – and I really started to feel better after a few months, two to three months. And my therapist continued to encourage me and told me up front – and I think that’s important. They told me how long this is going to take, what it’s going to take. So, a couple things that I always tell people when they’re starting this therapy is: One: You have to be very patient, okay? You also have to have a good attitude. And that’s hard sometimes because for me, I was going through a stroke. And now I’m doing this vision rehabilitation therapy. And I’m still doing some of the stroke things. I’m like, you know, easily I could have said, you know, “I give up. This is too much.” But you really can’t give up. And I always tell people – you mentioned the Facebook group. We have a lot of people that come on initially, when they first started, they’re like, “Oh, I have these VRT exercise, and it’s making me so sick, and I just feel horrible.” And I always try to encourage them to keep trying, because I felt the same exact way. When I first started, I was sick. And I was, like, “Oh, I just don’t want to do these things,” you know? Who wants to make themselves feel worse? I mean, it doesn’t make sense, in a medical point of view, does it? Because usually, it’s the other way around. But really, I think – and the doctor of therapy was talking about it – you really have to retrain your brain to accommodate what you’re going through right now. So, yeah, it takes time. It takes patience. And if you keep doing it, most times people do recover and get better.
Laura Cala 1:11:11
No, wonderful. And Cynthia has actually posted the link to David’s Facebook group in the chat. So, make sure you check that out if you’re not already on it. And Cynthia’s also posting articles in relation to what we’re talking about as well. So, make sure you scroll through the chat and have a look. Can I switch across to Vinisha now and sort of hear your insights about the same topic in terms of how long it took you before you saw that? That progress?
Vinisha Huwer 1:11:38
Yeah, absolutely. So, for me, I started to see it incrementally. Not so much: I wake up one day, and, oh my gosh, I feel so much better. But I started to notice it, I think about six weeks in, some progress. Especially my therapist. Every, you know, let’s say six sessions, he would test me on the same things. Like, “Hey, when you came in, and I asked you to walk down a line, your arms were out, you were just trying to, you know, balance yourself, and you were scared, here’s your posture.” But I did it six weeks later, and I was more relaxed, and I was better at it. So, he helped me see that progress pretty consistently. And then by the end of three months is when I really felt like I’d found a new normal. And I’ll never say that I went back to normal, it’s not really a thing. You just find your new normal, right? So that’s when I felt more confident. That’s when I was able to walk on my own. I eventually started running and getting back to more active, physical activities as well. But exactly what David said: you have to be so persistent. You have to continue your exercises – even past, you know, going to physical therapy, Vestibular therapy at a point as well. Couple of things my therapist said was, “You’re probably going to feel this for as long as, you know, unless there’s a cure at some point. But all of this is so new. But the goal is to make it feel like you’re wearing clothes.” Like, you know, you’re always wearing clothes, but you’re not conscious of it all the time. Right? “So,” he said, “that’s where you want to get to. So, you’re just going about your day, but you still have it – and that’s okay, you’re learning to cope with it.” So, I think that was truly, truly helpful. But yeah, it’s – you have to be patient. You have to put the work in. You just have to work a little bit harder to be upright and walk and have that confidence to just keep going. Always keep going.
Laura Cala 1:13:37
And it is, it’s one of those things, isn’t it? I know, having spoken to other Vestibular patients and what we read, it’s, I guess, it’s that new normal, isn’t it? It’s that it’s persisting through because something might be hard, but it’s gonna be worth it at the end of it, isn’t it? It’s that notion of: if you want to get to somewhere different, you’re gonna have to make yourself a little bit uncomfortable. I’d love to know: do you still practice a lot of the exercises at home? And how often? David, can I pass that one to you?
David Morrill 1:14:11
Sure. So, I don’t practice the actual exercises that I did in physical therapy. However, what I do do – and I always encourage people to keep, like, because the doctor said sometimes you regress a little bit, especially if you’re sick or whatever. But, so, I don’t do the particular exercises I did when I got home because when I went to a neurologist a couple years into my stroke, you know, I kind of asked him where I was. And he said, “So, basically, here’s where you stand. You can do these exercises, but you would have to do the exercises for an entire year. And you may gain 1/10 of 1% of your brain function back.” So, he’s kind of saying those exercises are probably, “You’re probably plateaued where you are,” because I do have brain damage. So, that’s a difference between me and an inner ear disorder. It’s there’s no fixing the brain damage at this point. So, he said, “You’re plateaued at that level. But that doesn’t mean you stop doing.” I don’t do the exercises that they sent me at home. But I continue to challenge myself outside. And I always tell people, especially new Vestibular patients that are going through this, is to challenge themselves – as long as it’s something that’s “safe,” okay? I always, always put that in air quotes, because you want to challenge yourself, but you don’t want to do something that’s not safe. You don’t want to fall. You don’t want to do any more damage than you’ve already done. So, I always challenge myself. I started going into a, you know, a supermarket. You know, everybody talks about the supermarket visit. They’re very hard. When I was first going through this, and the nurse brought me down. And when I was having my stroke, I went into a small hospital cafeteria, and she said, “It’s going to be confusing to you. And it’s gonna seem weird.” And I’m like, “What are you talking about? I go into cafeterias, and places all my life.” And it did feel weird. It felt strange, and my brain couldn’t process it. So, from this, from now, I just go forward, and I do things like that. So, fast forward a few years as I get better, not only did I go into the supermarket, and, you know, challenge myself, I actually now work part time in a supermarket. Eight years ago, when I had my first Vestibular symptom, I wouldn’t even have thought I could work there, let alone shop there for a few hours. So, and I go in there, and that is like the physical VRT therapy to me, because it seems like if I work three days, and I have four days off, and after I come back on my first day, I’m a little more wobbly than I am on my third day. So, I know it’s working. But I have to keep doing it. Because if I don’t go in for a couple weeks, I know I’m going to be a lot worse. So, that type of therapy, challenge your brain every day, whatever it may be. Crossword puzzles, or whatever you do. Always try to challenge your brain and challenge yourself but be safe doing it. And I think that’s a part, a next step up of the VRT system than the actual formal exercises that you do at home.
Laura Cala 1:17:11
Oh, absolutely. And I know so many people this week, especially online, talk about that shopping, that shopping experience. Those fluorescent lights or the big, white, shiny floors. I think I did that as well. It was practice, I’d sort of go in there for one item. And then as I got a little bit better and a little bit better, I’d sort of stay in there for a little bit longer and a little bit longer. But I always had to make sure that I allowed myself enough time, because it was about sort of pacing myself and retraining myself to be safe, as you mentioned, but also confident, I think, which we’ll touch on a little bit more. But Vinisha, I’d love to hear your, your take on that as well.
Vinisha Huwer 1:17:57
Yeah, absolutely. So, after I finished the three months of VRT, officially going into the actual facility, I kept up with the exercises, probably for about three, four months. But then I started to just continue to add and challenge myself – like you said, like David said. I have always been a really active person and just, you know, outdoor, just swimming, all of it, right? Walking, running – all of it. So, I said, okay, let’s just try to get back to that, you know? My doctors think it’s fine. I’m, my brain is the one that’s holding me back. My fear is. Right? So, I just started to add that. I started walking more, running; eventually, swimming, driving – all of that. So, I started to slowly add it on, right? Not all at once because I would have failed. But that’s it, and what I hang on to a lot is the concept of neuroplasticity or creating – I’m sure we may talk about it – neuro pathways. I have to constantly train my brain like, hey, it’s okay. Like, let’s just kind of keep learning over and over again that you can do all of this. And you feel better when you’re consistent with it. I can tell days, you know, I’m in HR and working at a computer all day. So, if I have a really long day, and then eventually I’m more conscious, like when I’m up and around like I feel wobbly. Like David, you know, you take that break from the grocery store, you go back the first day and you feel wobbly. Like, wait a minute, I didn’t challenge my brain today. I didn’t challenge my system, my Vestibular system. So, I think exactly what you both said. You just keep adding challenges, and you do it in a really safe way. But you just can’t let that fear stop you.
Laura Cala 1:19:43
Oh, such, such wonderful answers, and Cynthia’s actually posted an article in the chat around supermarket syndrome, which is super helpful. I know I’ve had a read of it. So, make sure you jump on, and you check that one out. Now, next question sort of stems from that notion of exercise as being tedious, I know we’ve sort of touched on it before. But I’d love your, like, a key message to those that are watching in regard to sort of a message of hope to keep going. I know I sort of said before, and I know I have had a lot of people ask me to the very beginning, I followed a lot of what Alicia Wolf did through the Dizzy Cook and changing a lot of things in my diet and the work using alternative therapies to really make a difference in my life. And I still have people message me and say, “Oh, my goodness. How, how do you do that? That seems really hard.” And it’s that notion of VRT and doing these exercises, that it’s really hard. My answer is, well, untreated Vestibular is really hard. And so, it’s choosing, choosing that hard. So, my key takeaway is to keep going, and it’s only going to get better. If you put the work in. David, what would your sort of key message be in regard to those that are sort of giving up a little bit, and they just can’t see themselves being able to commit to something like VRT?
David Morrill 1:21:12
Yeah, I know. And I know, it’s really hard. And I always tell people that up front because I’m of the mindset where you always, if something’s gonna be bad for you, you tell them up front. I used to be an emergency medical technician. And I was always taught that, when I was treating patients, if something was going to hurt them, then I would tell them upfront, “It’s going to hurt. Prepare yourself.” So, I always tell people that are doing VRT, “It’s gonna suck. It’s not, you’re not going to like it. You’re going to hate it. You’re going to feel sick. However, there is a light at the end of that tunnel. And that light is, in most cases, you’re going to feel better, and you’re going to feel a lot better.” Like for me, I went from a walker – I’m in a walker at 52 years old. Nobody wants to be there. I was. And now I am, you know, working outside the home and driving my car again, which I didn’t do for a while. So, all that began with VRT. All that accomplishment that I have now all began with VRT exercises. So, it’s like a starting point. And, you know, I know, for people out there, especially like me. Like I said, I was 52 when this happened. The last thing I want to do is start over. And nobody really wants to start over. It’s like, you know, it was the same thing with my stroke recovery. I was at a third-grade level after my stroke. So, I had to relearn how to talk, how to, you know, walk correctly and all those things. Recall. Not only that, I had to do the VRT too, so not so that people feel bad for me. But those things. When you when you start over, it’s at a point of your life where you feel more comfortable, you feel comfortable with yourself. Sometimes it’s really hard to do. You just got to be, again, I said it before, because your mindset. It’s all about your mindset. At first, I was really, really upset that this happened to me and my family. But I wanted to put a positive spin on what happened. And I did. But first I had to get better to do that. So, I worked hard at the VRT, and I worked every day, and I made sure I got better. And then when I did get better, I was able to give back and help others. So that’s what I would say, you know? It’s a real hard game. It’s a long game. But it’s well worth the outcome at the end because you have much more function ability in life than you had previous.
Laura Cala 1:23:44
Amazing. Absolutely amazing. Vinisha, can I pass that one across to you?
Vinisha Huwer 1:23:50
Yeah, absolutely. Both of you have shared: you just have to keep moving forward. Let’s, you know, the Olympics are going on right now, right? All of these athletes, they didn’t just wake up one day and have the skill; they put a lot of work in. I’m sure it continues to be extremely hard for them. That’s the same concept. You just have to keep moving forward. You are going to have bad days. And that’s one of the key things: forgiving yourself. If you have a bad day, like, I used to just completely spiral like, “Oh my gosh, I’m back to where I started. I’m not going to ever feel better.” That’s not true at all. I got up, you know, the next day. I fought a little bit harder and just kept overcoming. That’s just what you have to do. No, it’s not fair. It’s not fair that this happened to any of us. And that is definitely the part of, you know, we have to overcome that. And it’s okay to take the time to do that. But you know, when good things happen, we don’t say, “Why me?” Only when bad things happen. That’s just life. That’s just how it is. Yeah. So, keep putting the work in because if you don’t – just like, you know, learning a new skill – you cannot expect to see any outcomes if you don’t put the work in. And I promise you, promise everyone here: it is worth it. It is not easy. It’s not meant to be easy, but it’s worth it.
Laura Cala 1:25:10
I love that. And I guess we spoke about it, was briefly spoken about in the session before, about finding the right therapist. Now, for me over in Australia, and I know there are a few Australians watching. Our issue over here is there are limited therapists, and Vestibular is something that is so, I want to say, unknown, and it’s not talked about a lot. So, people like David and Vinisha, they’re sort of like Vestibular celebrities for the Australians because they share so much knowledge. And that’s, I guess, when we talk about one therapist. For me, it was never one therapist. It was a Vestibular therapist. It was a neurologist. It was the support groups, it was VeDA. It was a psychologist. I’d love to hear about – I know the Australians, in particular, would love to hear about how you found the right therapist. I guess, for me, it was finding the right doctor. Initially, my diagnosis took two three years. Whereas I think for a lot of people, it’s that notion of finding the right therapist. So, David, can you talk us through your experience with that? I know your journey being a little bit different. But when you were going through, I guess, ongoing care and ongoing treatment, was there that notion of “Is this the right one for me? Who else do I need to find and sort of instill in my journey of recovery?”
David Morrill 1:26:37
Well, absolutely, correct. And my story is, like every story I have, is different and convoluted. So, for me, I found the right therapist by accident. Basically, what happened with me, like I said, I had a stroke. And I was in the hospital for a number of time. And then I went to a stroke therapy unit. And they really didn’t understand the type of stroke I had. Like the doctor was talking about before, mine was in the cerebellum. I had a brain clot in my brainstem, which blocked off blood to my cerebellum, which causes, obviously, the balance center of your body. So, I was in physical therapy, they were trying to, you know, do traditional therapy – people that have arm weakness, leg weakness – and that just wasn’t cutting it for me. So unfortunately – and fortunately for me – I lost my job at the time, which meant I lost my health care for the people that are here in the United States at the time. So, I had stopped doing that therapy because we just couldn’t afford it. So, my sister worked for a friend of a doctor, and he had a physical therapy practice. And I had no idea what Vestibular therapy was. I had no idea about any of this. And she said, you know, “This guy has said he will take you on as a patient. And he’s going to charge you very little because he knows you’re out of work and you don’t have insurance.” And I said, “Okay, great.” And so, he just brought me in. And I think I alluded to it earlier. He basically sat me down on his bench. And we talked for about 15 to 20 minutes. We didn’t go up and do any exercises, any therapy at all. We just talked for 15 minutes, and he said, “What can I do to make you feel better, David?” And I said, “You know, all the other stuff is fine with me. It’s my balance. I can’t walk. I’m in a walker because I cannot balance myself. How can I get this back?” The other therapists really didn’t understand it because they were trying to do a stroke therapy, not a vestibular rehab therapy. So, finding him was my light, my godsend, because he listened to me, one, and two, we just worked on the, you know, the brain part that was not functioning: my cerebellum. And it helped get my balance back by doing a number of different exercises. He had this really neat balancing machine. I don’t know if anybody’s seen them out there. But you stand on this platform, and he moves the platform while you’re going. It’s really difficult at first. And there’s a computer screen there, and you can look into the screen and do these different exercises. So, when I first did my first test the first day, I was testing out like I was an 82-year-old man, and I was 52 at the time. And then, you know, this is how he would see how well we were doing. Three months down the road, I was back closer to that 52-year-old man’s balance. So, he could test that by using this machine. So, my Vestibular therapist wasn’t found by looking and searching. Mine was by accident. But I’m sure glad that I found him because he was the one that set me on the path to where I am today.
Laura Cala 1:29:52
Amazing. And Vinisha, how about yourself?
Vinisha Huwer 1:29:55
Yeah. Laura, similar story to yours, where I found the right neurologist. And to me, it was kind of sheer luck that I did. I went to three different neurologists before. But he specializes in neurotology. So, very close to you know, where I live right now. And his clinic, so to speak, had the right Vestibular specialist, had the rehab psychologist, got me in touch with the support group that I attend as well. So that was really my journey to finding the right people. And it takes a community, in addition to, you know, your own family that’s also trying to navigate something new that’s happened to you, that’s not common. It’s not a common disease or disorder. So, it just, it really does take a village. We say that about, you know, raising kids, but it’s true for these types of situations as well. And just having the right community – that people understand you, like, you’re not crazy. This is a real thing. And helping you. That’s, that was absolutely tremendous. And one of the things I really respected about my neurologist, and then also, rehab psychologist and Vestibular therapist is, “Look, we’re not here to cure you. That’s not the goal here. So, we’re not going to set expectations that are going to get your hopes up. And then you may not meet them. But we’re just going to help you find a new normal. We’re going to help you cope as best as we can. And we have to put the work in.” And to me that’s, at the time for a second, you’re like, “Dang it.” Like, “I want a cure! I want my life back.” But the more you put the work in, you understand. You believe them, and you put the work in, right? Because they know what they’re talking about. They’re here to not just make empty promises, but they’re here to help you. So that was really helpful and just wonderful to find the right people.
Laura Cala 1:31:49
Beautiful. Andrea has also posted. Andrea, sorry, has also posted on the chat how to choose a VRT therapist. So, make sure you check out that article if you want a little bit more information on that. Now, we’ve had a question come in around “How did you stay active when you were at home and not driving? I’m in the icy north and finding it difficult to stay active.” Now this one for me, similar to Vinisha, I was quite active. And when my vestibular disorder sort of started to come into play, and I was searching for answers, I just wasn’t confident enough to be able to drive. And it wasn’t until I started going to therapy, and I started actually trading what was going on that I was able to start driving. And it literally started from driving around the block, to driving to the shop, to driving a little bit further. I think it took, like, a good 12 months for me to even think about going on the freeway with all the different cars and all the different lines. In regard to staying active. I, like David mentioned, I really wanted to fast track the ability to be able to walk more and to do something because it’s that notion of when you stop doing it, you sort of – there are so many different things going on in your head about Vestibular that you want to do something that releases those endorphins, so you feel amazing. And again, similar to the driving, I started with walking to the end of the driveway, to walking to the end of the street, to walking a little bit further. And it was like our VRT therapy, which we’ve been talking about: it just took time. And for me. David, how about yourself what in relation to sort of driving and exercise? What advice can you give?
David Morrill 1:33:47
Yeah, and I think, Laura, yours is the same as mine on the driving thing. I was just, like, I was like you’re starting over again. And I didn’t feel safe to drive. It took me took me four years after my stroke in order for me to feel state to start to drive again. And I always emphasize that to Vestibular patients – or any patient – that if you don’t feel safe to drive, you really shouldn’t drive because you know you not only can hurt yourself, you hurt others. So, don’t do this just because you want to. Do it when it’s safe. I always tell that at the front. But for me, same way, I would go out in my driveway and drive a little bit there, drop down a back road, a parking lot at night when there was nobody there. You know, I did that when I was learning to drive. So, I figured maybe I’ll do that when I’m relearning to drive. For me also, like you said, Laura, going out and getting the mail or walking around my house is really good exercise and good for your mind. So, and if you can’t get – initially, I lived in a northern climate in Maine, for people in the United States. I now live in Florida, so I don’t have to worry about this, but in the wintertime it’s tough to get outside – and really tough for a Vestibular patient in one of the colder climates, because a lot of times it’s ice on the ground, and that just becomes a whole new set of problems for a Vestibular patient just trying to walk on, let alone a regular person. So, you can do things inside your house too, you know. Walking around, you know, and I always made it a point, you know, if I was on the computer, if I was watching TV, every half hour, get up from that computer or television and walk around a couple times in your home. Do something. Do something different, you know. Go outside to the mailbox, if you can and if the weather’s nice, and walk as much as you can. Because, although you probably can’t run, walking is very good exercise, and it keeps you going – and it keeps your mind going. So, those are a lot of the things, like you said, just doing it little at a time. And everything with Vestibular is a little at a time. And we always celebrate this in the Vestibular community. The little things are the big things. You know, in my Facebook group, which we mentioned earlier, a lot of people say, “Oh, well, I was able to get up today and go down to my mailbox.” Okay. Then we clap and say that is a great goal. Because you always want to start – if you know anything about goals – you always want to start your goals on achievable goals and not something you can’t achieve. So, once you achieve these small goals, you can keep going to the next goal. So, start small, and build your way up.
Laura Cala 1:36:26
And it’s such a mindset thing, isn’t it? It’s – you really – I think it was Vinisha that mentioned it before, it’s, you’ve got to have that mindset. It’s not going to change overnight. And if you don’t celebrate those small things, achieving the big thing to sort of achieving a new normal just isn’t going to happen. Vinisha, can you share sort of your experiences around that, especially from that point of view? I know I read that you sort of run marathons, and you’ve spoken about that before. You know, I can only imagine what that would have been like to not be able to even walk very far, to not be able to do something that you love. So, I’m sure everyone would love to hear about that.
Vinisha Huwer 1:37:10
Yeah, you know, it’s funny, I was actually training for a half marathon when I started to exhibit all my symptoms. That’s how I noticed it. I would train on a treadmill because I’m in Ohio. When I started training, it was about January – cold, ice, like right now. And I just was, like, wait a minute. Why do I have to hold on to my treadmill? Like, I can’t just run? It was weird, right? So, I started to notice that, but after therapy, and starting to learn how to walk again, exactly what you both mentioned: start at the end of the driveway and to the street. You just need those small wins to train your brain and tell yourself like, “Oh my gosh, I can do this. Okay, so maybe I can do more tomorrow.” Right? Like, that’s how it works. So just adding incrementally. The other thing – David touched on this as well – is: move as much throughout the day, especially for someone like me, I’m at my desk, working, usually more than eight hours, right? It’s just busy. But some of the tricks I’ve learned is if you can get a smartwatch of any kind, they typically have like, every 50 minutes, they’ll alert you to get up and walk. That’s great. Then you’re not thinking about it, but it forces you to get up, and it reminds you, so do that. I again live in a place where there’s snow and ice on the ground. Like, we just got hit with Snowmageddon! And it’s been difficult to be outside. But I have a recumbent bike. And no matter how busy my day has been, if that’s my day to work out, I’m gonna make time for it. Because I know the next day, I’m gonna regret it. My brain probably regressed a little bit; my body did. So, just find little things that work for you. You don’t need a ton of fancy equipment. You can have your phone. You could do a workout video, right? Just do a standing, walking, workout video. There’s so many free resources that you can leverage. But it’s about you just being dedicated. And putting yourself and your rehab first. That’s what it comes down to. And I’ve put in the work. So, a little, you know, something that I’m hoping will inspire all of you listening, I’m actually working to run my next, my first 10k since all of this started for me, in April. So, you can do it. It’s taken several years for me to get here but you can do it. You just have to be patient.
Laura Cala 1:39:24
Ah, I love that. And we’d love you to share your journey with you towards that goal. I’ve had a question come in here, David, specifically for you. It says “Hi, David. How long did it take you to start therapy with the PT you mentioned from your stroke?”
David Morrill 1:39:44
So, it was a little bit after because I had to recover enough to be able to do therapy first. So, I was in the hospital for a week or so, just recovering from the stroke, and then I went to actual therapy for a week or two. So, I was able to do that within a month after my initial diagnosis, and I think it’s important to try to get there as soon as possible. But we don’t want to rush it either – especially in my case, because I had more things going on than just Vestibular. I had, you know, complications of stroke. They were trying to make sure my medicines are correct, that I wasn’t going to have any more blood clots or anything like that. So, trying to get it early is great. But also, you have to listen to your doctors. And you want to take your whole health picture as a whole into effect and see what’s going on. And I always tell people, you know, I have kind of, like, a dual diagnosis: I have, I had a stroke. But I have, you know, a vestibular disorder that I got because of the stroke. And a lot of people will have similar things; will have another disorder or another disease, and they’ll have Vestibular disorder that has caused it or on top of it. And so, it sometimes becomes challenging to juggle both. But you kind of just kind of keep yourself focused on both parts, because you can do a lot of vestibular rehab therapy, but if you’re not paying attention to your blood pressure and other things that go along with a stroke therapy, it doesn’t matter about the Vestibular therapy, because your body’s not going to survive, you know? You need to take care of your entire body. So, listen to your physicians, make sure you really talk to people about how your whole health can be complete, not just your Vestibular health. So, I always talk about that because it’s important. Your overall picture. Sometimes people get too focused on fixing this and fixing this and – uh-oh, wait a minute, your blood pressure is not good, or something else over here. It’s going to take you down before the Vestibular will, so the overall picture. And, like the person that was writing in again, it’s just being patient to get to that Vestibular therapist as quick as you can, but not to the point where it’s going to deter you or set back your health. I hope that answers the question.
Laura Cala 1:42:06
No, that’s wonderful. Now there’s a question that’s come in and it says, “I have a Vestibular condition. I tried VRT because neurology could not help me. However, after trying VRT, I had a rebound effect two to three hours after the Romberg exercises were completed with a therapist. Have others experienced this rebound effect?” I personally have not. Vinisha or David, would you like to comment on that one?
Vinisha Huwer 1:42:37
I have not either. I’m actually not sure what that is.
David Morrill 1:42:45
Yeah, I didn’t do it personally. But I’m wondering if it’s something that you’re doing too much work? I’m not sure if that’s what the question coming in. Sometimes, if I were to do too much, and try to do too much, I don’t know if that’s what’s called a rebound effect. But if I would try to push myself too far in my therapy, it would actually be worse for me than doing that the suggested therapy. Because my therapist would know. They say, “Okay, you’ve done enough for today.” I was that type person that wanted to go, go, go – because that’s how it was, previous to my stroke. I was, you know, always on the go. So, I wanted to do that after my stroke as well, to try to get better quicker, but I don’t know if that’s what she’s talking about. But I think, you know, doing your exercises at the advice of your therapist, and how much – because too much of anything is sometimes too bad. Not good.
Vinisha Huwer 1:43:39
Let me clarify my answer. Thank you. That makes more sense now. Yes. I, whenever I did therapy, my therapist said that your symptoms are going to escalate. That’s kind of the point of this, is, “We’re going to challenge you. You’re not going to feel great. But the more you do this, you’re going to learn to deescalate sooner,” right? Like, my first one I was in bed for like, I don’t know, six hours, and then it was less, and then it was less. And then one time I went, I went to therapy, I came home, and I started making food in the kitchen. And then I realized, oh my gosh, I could move. So, yes, you may rebound. You may feel like you’re going downwards, but you’re not. It’s, that’s just you teaching your body that you are overcoming it. You’re learning. It’s challenging. Again, we’re not doctors, so we can’t say that for sure. But that is a pretty typical pattern.
David Morrill 1:44:35
And I would just also add to that: it’s different for everyone. So, you know, don’t put yourself into a box where, you know, Vinisha and I were three months, maybe four months. That’s not always the box. It may be longer; it may be shorter. Everybody’s different. Everybody, every vestibular disorder is different. So, don’t judge yourself on how others get better. Just keep going and do the best you can with your abilities.
Laura Cala 1:45:05
Wonderful. Now, a question has come in about: “Are medications also a part, along with VRT, of your improvements?” Now for me, I did therapy and alternative therapies and supplements and your Heal Your Headache diet. Actually, I think I actually remember Alicia Wolf, and even Ed Eggleton, talking about how they’d sort of got themselves to that 80%. And then they took their medication. And my story, maybe because I had followed their journey so closely, I’d almost made sure that I was sort of on that road. And for me, that was me. And I ended up – I know, a few people in days gone past have mentioned it – but I went on Effexor. But before I went on Effexor, I had gotten myself to a point that I was, I had a lot less dizzy days. But it was the thing that finally hit it on its head. What are your experiences, David?
David Morrill 1:46:09
For medications, for me, it wasn’t a lot, because, again, it was, the brain was damaged. The only thing that helped me a little bit initially was a little bit of diazepam to help me kind of be less dizzy. But that’s not a long-term fix. My doctor said that’s just a very short-term that helped me initially. But I encourage everybody to talk to their doctors, because – like you said, Laura – there’s a number of different ways to help your whole body, when talking about the whole body. And when it comes to medications, it’s – again, everybody’s different. You know, you talked about Alicia, Alicia Wolf. She does a lot of great food recipes. For me, food is not a trigger, because again, it’s – I have brain damage, not an inner-ear thing. So, but I’ve heard a lot of different things – medications, supplements – all this stuff is good. Make sure you talk to your doctor. And again, as part of your overall health, supplements and other types of diet restrictions can be helpful. For me, there wasn’t a lot I could do as far as other stuff because of the type of damage I had in my brain. But I did compensate a little bit with diazepam.
Laura Cala 1:47:31
Wonderful. Before we switch over to Vinisha. Andrea’s shared some great articles around medication and dietary considerations. So, make sure you check out those articles as well. Vinisha, can I am hand that one across to you?
Vinisha Huwer 1:47:45
Yeah, absolutely. So, for me, it was, diet was huge, because it was triggering my Vestibular migraine. So, I learned – I did a little bit of elimination here and there. But I learned that complex carbs are the way my body breaks down certain sugars. That was really impacting me. So, if I eat a lot of carbs, my body doesn’t like that. That would trigger a migraine. So, I learned that. The other thing– not for my PPPD. So, that’s my constant swing – but for my Vestibular migraines, the big attacks that just, you know, put me down. I take lamotrigine for that. That was prescribed by my neuro. And that just kind of helps. It’s actually – oh, goodness, I forget… not bipolar, but I’m sorry, I can’t remember. But it’s, it helps, basically, subdue a little bit in your ear to help with those attacks. So, I take that and magnesium. I think on Facebook, on a lot of the resources articles you read, magnesium is really good for relaxing the body, and it also works with my medication really well. So that’s been crucial. But to David’s point, to Laura’s point, you have to find the combination that works for you. It takes time – it really does. But just, just try it out. With supplements, rarely will you have an adverse effect because it’s not medication. It’s effective or not. And also, be patient because again, it’s not medicine, so it’s not going to work in a day. It’s not going to work immediately. So, you just have to go through the process. Your body knows what’s gonna work for you. Listen to that.
Laura Cala 1:49:25
Amazing. I’m just scrolling through the chat now. Sorry, Vinisha. Anne has asked: what were the medications – what was the medication that you mentioned?
Vinisha Huwer 1:49:39
Yep. It’s lamotrigine, it’s l-a-m-o-t-r-i-g-i-n-e. That is what I take. 100 milligrams a day. So, I just take that in the morning. I’ve had no side effects from it. I’m very consistent with it, and it’s really helped me reduce my Vestibular migraine attacks.
Laura Cala 1:49:58
Amazing. Now, you’ve both given everyone so much amazing information and hope. Before we finish off, are there any final words that you’d like to share with the group? David?
David Morrill 1:50:12
Sure. Yeah, again. I’m gonna just emphasize it again: you got to be patient with yourself. You got to kind of love yourself. Make sure that you’re self-helping yourself, making sure that things around you going well. You need to be patient. I was not a patient person at birth. I learned patience as I went along with this disorder. And it’s a very crucial skill to have when you’re having this type of disorder to get better and to compensate. So, to help people out there that are – even if they’re just starting this, or they’re in the middle of this therapy – really, the key thing is: you got to keep going. You just got to keep going – get up each day and be like the boxer, Rocky, or something and just keep fighting. Because if you don’t keep fighting, the Vestibular will win. And we don’t want that to happen to anyone. That’s why this group is here. That’s why the Vestibular Disorders group is there. We’re here to encourage you guys, and we’re here to help everybody cope and help everybody to get as best as they can. Like Vinisha said, we always say “our new normal.” A lot of people don’t want to hear that word, but it is our new normal. I am not the same person I was eight years ago, when I had my stroke. I am a different person. And that’s okay. Because now I know how I need to live. And I know what type of expectations I have every day. So that’s a lot easier for me to live than not knowing. So again, just keep going, everybody. If you guys have, you know, if you get frustrated, reach out to one of us. I have my Facebook group. VeDA will help you guys out – reach out to them. They have a number of different resources. If you guys just feel frustrated and don’t want to do these exercises – or just any type of frustration – just reach out to us. We’re here for you.
Laura Cala 1:52:03
Beautiful. Vinisha?
Vinisha Huwer 1:52:06
Yeah, it’s been so wonderful being here. So, I’m so grateful. But that’s exactly everything that David mentioned. That’s exactly it. I just want to say: you’re not alone in this. You know, this is a journey that so many of us are going through. It’s not something that’s talked about very often in the open. But you are not alone. And I think for me that was the first step to understanding and working towards my recovery is knowing that there’s other people like me – not that you want there to be, but it’s always nice to have that. It’s a community. It takes a village. And then with what you’re going through, ask for what you need. Be clear about it. Because I know sometimes when you go to specialists and doctors and therapists, you get frustrated because you’re not getting the right answers, or they make you feel crazy. I felt like that a lot. But I learned to advocate for myself: “This is how I feel. This is what I’m going through. This is the help I think I need.” You just have to be more outspoken about it. And it’s going to do wonders for you. So just keep going. Even if it’s literally five extra steps a day, please keep going. Do not give up. You will be a better person because of this. Like David mentioned, he’s not the same person. I’m not the same person. And quite frankly, I like this me better because this me has a better understanding. I’m more forgiving. I operate – professionally, personally – with more empathy. So, I’m thankful for that. Just always reach out for help – and just keep working on yourself.
Laura Cala 1:53:38
Absolutely amazing.
David Morrill 1:53:40
One more thing, Laura – I’m sorry. I didn’t mean to interrupt. One thing that I didn’t say is educate yourself on your disorders. Educate – it’s very important. A great place to start is vestibular.org. There’s a lot of education, a lot of articles in there. But that’s the first thing I did is educate myself about my disorder. So I can be more helpful to doctors, to myself and to others. So, I just want to throw that in because I forgot to mention, and I always mention that, number one.
Laura Cala 1:54:09
Amazing. How lucky away that is to have VeDA put on such an amazing week for us with not just that doctor perspective, but the patient panel. And you guys have just both been absolutely brilliant today. I know I’ve learned every time I talk to another Vestibular warrior. I just feel so full and, as Vinisha said, you know it’s not necessarily something that you want someone to experience. But it is something that is so incredibly special. So, if you are, as David said, if you are struggling, if you do need those words of encouragement, join the Facebook groups. Find us online. Reach out to VeDA. There are so many support channels available to you. And I can certainly attest for that, being over in Australia. This is why I love these guys so much – because of everything that they provide for us. So, thanks again for joining us for the 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 Life Rebalanced Fundraiser at https://vestibular.org/elr. And don’t forget, tomorrow’s session is all on Vestibular migraine. I know a few people have been posting around Vestibular migraine specific, so it’s going to be another sensational day. So, thank you so much, everyone. Thank you, guys, and have a great day.
Vinisha Huwer 1:55:34
Thank you so much for having us. Take care. Bye.
1:55:37
Bye.