Podcast: How to Explain Your Vestibular Symptoms to Your Healthcare Provider

ICU – “I See You” Podcast

How to Explain Your Vestibular Symptoms to Your Healthcare Provider

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Anyone who has ever experienced vestibular dysfunction will tell you, vestibular symptoms are hard to describe. It can be difficult to explain the difference between symptoms like vertigo, dizziness, imbalance, spinning, disequilibrium, and more. Factors like acute symptoms and anxiety can make it even harder to paint a clear picture for your healthcare provider.

In this episode, vestibular patient Joy Holten and medical student Marcus Paoletti discuss this issue and provide insight into how your symptoms can be best communicated to your physician.

About the guests:

Marcus Paoletti is a second-year medical student at Keck School of Medicine, USC. Before that, he attended the University of California, Berkeley, where he received a degree in Molecular and Cellular Biology. He became interested in otolaryngology and healthcare related to the head and neck early in his training due to the complexity of the region’s anatomy and vital importance of these structures. He is also the co-president of the otolaryngology student interest group at his medical school.

Joy Holten is a 48-year-old mother of 2 who lives in Austin, TX. In 2018 she began experiencing constant dizziness after an infection. For 3 years she suffered daily symptoms but was still able to work from home. In 2021 that all changed. When her symptoms went from bad to worse she visited the ER 5 times. She was finally forced to take medical leave. Eventually, she found Dr. Shin Bey, one of the leading “dizzy” neurologists in the county, who diagnosed her with Vestibular Migraine and PPPD. Since then, Joy co-founded a YouTube series called “Finding Joy in your Vestibular Journey” and hosts a Zoom support group for fellow vestibular sufferers.


Cynthia Ryan, Executive Director of the Vestibular Disorders Association (VeDA) https://vestibular.org/

Kimberly Warner, Founder and Director of Unfixed Media https://unfixedmedia.com/

This podcast is a co-production of the Vestibular Disorders Association (VeDA) and Unfixed Media.



VeDA uses otter.ai to create machine-generated transcripts. This transcript may contain errors.

Cynthia Ryan – VeDA  00:03

Welcome to the ICU Podcast where we explore the vestibular experience through conversations between patients and the health professionals who care for them.


Kimberly Warner – Unfixed Media  00:14

During this podcast, we invite patients to share their stories and healthcare professionals to ask questions, so they are equipped to better care for and truly see the invisible challenges faced by their patients. I’m Kimberly Warner.


Cynthia Ryan – VeDA  00:29

And I’m Cynthia Ryan, and we are your hosts on this journey of discovery. Well, welcome, everybody. I am so glad that the topic of our first podcast episode is how to explain your symptoms to your healthcare provider because I think it’s a key piece of the vestibular patients journey. This tubular symptoms are difficult to describe. And often patients don’t have the words to explain how they’re feeling, especially the technical language that healthcare providers normally think in terms of In addition, there are different vocabularies, patients may not be feeling well and simply can’t articulate clearly. And this can lead to misdiagnosis and frustration on the part of the patient who doesn’t feel heard and understood. So we’ll get started by introducing our guests. I want to welcome Marcus Poletti is a second year medical student at the Keck School of Medicine University of Southern California. Before that, he attended the University of California Berkeley, where he received a degree in Molecular and Cellular Biology. He became interested in otolaryngology and healthcare related into the field of Head and Neck Surgery early in his training due to the complexity of the region’s anatomy and, and its vital importance to these structures. He’s also the CO president of the otolaryngology student interest group at his medical school. And Kimberly, I’ll pass it off to you.


Kimberly Warner – Unfixed Media  02:06

Hi, Marcus. So happy to have you here. And Joy Holten is with us as well. She’s a vestibular patient, and a 48 year old mother of two who lives in Austin, Texas. In 2018, she began experiencing constant dizziness after an infection. For three years she suffered daily symptoms but was still able to work from home, like a lot of us but then in 2021, that all changed when her symptoms went from bad to worse, she visited the ER five times, and she was finally forced to take medical leave. Eventually, she found Dr. Shin Bay, also my neurologist, one of the country’s leading Dizzy neurologists who diagnosed her with vestibular migraine and pppd. Since then, Joy co founded a YouTube series called finding joy in your vestibular journey, and host a zoom support group for fellow vestibular sufferers. I’m so delighted to have both of you here. And I’m just going to jump in. Joy. I want to ask you a question to get this started. Because personally, for me, I know it is very hard to explain our symptoms, and I struggled with that for years. Why is it so hard to explain our symptoms? Do you have any thoughts about that? And did you struggle with it in the beginning as well?


Joy Holten – Vestibular Migraine and PPPD  03:34

Yes, I struggled with describing my symptoms, because there are so many different little symptoms that you’ve never heard textbook words for them, you know, like, Oh, my toes hurting, It’s throbbing. The feelings I started having were so unusual. I remember. Sometimes it felt like if you would take a pin upside your right temple and just push on it. It wasn’t a pain. It was just a feeling. And trying to describe that to a doctor was so hard. I would have little tingles on my head. I would sometimes have what we call what I call because I name my symptoms. I give them little names for all the symptoms I have. I call it the jolt forward. I feel like I jolted forward, but I didn’t. You have the brain scramble, where you feel like someone’s shaking your head in your head stops but your brain keeps scrambling. I know on weather days when the pressure I get the rocking feeling like I’m rocking on a boat. And there’s so many feelings and when you go in, you’re like, I’m dizzy. And then the doctors want to ask you, well, is it dizzy? Is it vertigo? Is it this and you’re like, I don’t know, I just feel dizzy, I just feel off balance.


Cynthia Ryan – VeDA  05:21

You that that makes me think joy, when you’re saying that, I’m thinking a couple of things, you’re using some words that I haven’t used. And I love your term. So you know, the the jolting forward feeling or the, you know, the brain scramble, which a lot of people might use the term brain fog. Or maybe that means something different to you. But that’s that’s the point is that everybody has their own words, to describe what’s going on for them. And the healthcare providers are trying to fit them into certain boxes that are used in medical terminology, you know, like dizziness? That’s a good example. Both because there are so many flavors of dizziness, there are so many things that the word dizziness can mean. And in order to make a diagnosis, a health care provider wants to find that that one word that is in their system so that they can check that box. And all those.


Kimberly Warner – Unfixed Media  06:23

Yeah, and but it also makes me think and Marcus, maybe you can chime in on this. But I would imagine the doctor is also trying to assess the validity and the mental stability of this patient. And so you add some of these words like tingly and rocking and strange vision, and you almost think this person might be on drugs. And sometimes we’ve talked about that, as the distributor patients where we do feel like the best way to describe it is that we’re on drugs. And that’s the last thing we want our doctors to be thinking when we’re describing these symptoms.


Cynthia Ryan – VeDA  07:03

Dizzy, not drunk. That’s the the word that the phrase that we have for it, you know, because a lot of the similar patients have been accused of being drunk. Yeah, Mark is that, go ahead and go ahead and share with us your thoughts on that?


Marcus Paoletti – Medical Student  07:20

Yeah, absolutely. Well, Joy. First of all, I thought your explanation of your dizziness was profoundly illustrative like you explained it in such a clear way to me, I mean, you didn’t have to use technical jargon or medical words like apraxia. Or you’d have to say the word vertigo just by explaining how you really felt beyond the word dizzy, I feel like you conveyed a lot that would really help a healthcare provider. I’m only in my second year of training as a medical student. So I don’t actually have that experience to have to say that I’ve seen many patients with vertigo myself. So I can speak just from what we are taught as a second year medical student. And that is, just like Kimberly noted, a lot of our practice is hearing the patient, trying to let them use their own words, and then fitting what they’re saying into our little boxes in our heads, too, to try to differentiate the diagnosis among a variety of things.


Kimberly Warner – Unfixed Media  08:27

That’s got to be a slightly complicated thing to do.


Marcus Paoletti – Medical Student  08:32

It is a little bit of a complicated thing, because dizziness is such a broad differential diagnosis. And what I’m saying is that when someone comes in with dizziness, it’s possible they’re on drugs, it’s possible they’re having vertigo due to a number of causes, whether that’s central or peripheral. It’s also possible that they’re having an adverse drug reaction, not anything illegal just to their own normal medications, it’s possible that they’re having a cardiac event of some sort. So there’s a very wide differential, and you know, your balance and your vestibular system is like your sixth sense that you don’t really think about. So it can be hard to explain when the sense goes wrong, because you’re not thinking about it in the same way, like maybe your eyesight you can easily explain that you’re seeing shooting stars or something, but it’s a lot trickier with the vestibular system. So I think when you explain things in your own words, that’s immensely helpful I would imagine to a healthcare provider.


Kimberly Warner – Unfixed Media  09:32

Wow, Marcus. Okay. I wish you were my doctor eight years ago. But joy, I want to know how did your physicians respond to you when you first explained those symptoms?


Joy Holten – Vestibular Migraine and PPPD  09:44

So when it first started in 2018, I went to a few different doctors. Yeah, I went to cardiologists. I went to my OB GYN. Finally I went to my primary care physician In and, you know, he ordered a stool sample which we found a bacterial stomach infection, which not quite sure if that’s really what it was or if it was a vestibular migraines because it’s funny in 2021 same symptoms, but anyways, um nobody really knew. I will say my primary care physician at that time I had been going to him like 15 years, he really you could tell he really cared about me, we’ve had a great relationship. And he just sat down and said, We’re gonna figure this out. You know, it took a few tries a few different you know, I went to an auntie that just didn’t really know about any of the vestibular stuff. He finally sent me to a neurologist here locally, in he first diagnosed me with occipital neuralgia. You know, the nerve in the neck, which is probably when I feel that pain or that pressure feeling it could possibly be the occipital neuralgia. So, you know, physical therapy, physical therapists are wonderful, by the way, you know, so we did that still felt dizzy. And I knew something was so off. So I went to ne t, who handled dizziness. So we did the EMG, V and G test, then I got to do the stapler, physical therapy again, those doctors are wonderful, were really helpful. And so this


Kimberly Warner – Unfixed Media  11:41

guy interrupts like, What do you mean, you say, wonderful, what is what does that mean?


Joy Holten – Vestibular Migraine and PPPD  11:45

They just really take the time. You know, luckily, the ones that I had took the time to really listen to your symptoms, explain kind of your vestibular system, what it’s going through, and they’ll take the time to teach you exercises to help you and they explain, you’re gonna go through physical therapy, it’s not going to be a quick fix, but stick with it, it may provoke some of your symptoms at first. And they will, they will help you through that. And they are the ones that I had seen to give me a regimen of physical therapy. tailored to me, you know, they just didn’t pull out a book and say, Okay, we’re going to do the same thing for everyone, I feel like they really get to know the individual. And kind of, I don’t know if I’m skipping ahead, but that’s kind of what you want to look for in a physician. So in 2021, my primary care provider had retired. So I went through doctor after doctor trying to find the right one, I was told by one doctor that there was nothing more she could do for me. I should see an Eastern medicine doctor, she had not run any tests on me, she hadn’t even seen me in person, it was all tell him ID and I felt very defeated. That is, when I went on to the Vita website, I found a vestibular therapist, that would come to me. And from there, she came and worked with me, and she recommended Dr. Bait. You know, I had seen him on the posting groups, and I made the phone call. And it wasn’t just anxiety. A lot of the doctors were telling me it’s just anxiety. It wasn’t. So what I have found, is finding that doctor who’s may not have all the answers, but will take the time to say hey, we’re gonna I’m gonna stick this out with you. Until we find the answers.


Cynthia Ryan – VeDA  14:06

Yeah, you bring up a couple of really good points joy. One is your when you were talking about how wonderful physical therapists are, because they take the time with you. I think that’s one of the challenging things about the system is that physicians what we you know, refer to us as medical doctors who have an MD or similar sort of credential, they just within the system, it is only set up for them to be able to see a patient for a maximum of 10 to 15 minutes. So they don’t they don’t have the time to really get to know patients, you know, which is it’s just part of the system. It’s I guess you could say it’s bad, but I don’t know that we can make that judgment. It’s just part of the system, but their role is also different. You know, the role of the physician is to To assign a diagnosis and then refer the patient to treatment, whereas the role of a physical therapist is to create a customized therapy regime for that patient. And I’m just curious, you know, Marcus, as a physician in training, how are you taught to speak to patients when you’re documenting their symptoms, or their medical complaints, for the purpose of collecting information so that you can hopefully help assign a diagnosis?


Marcus Paoletti – Medical Student  15:38

Yeah, that’s a good question. So when we are taught on interviewing patients working with them to help them with their conditions, we’re taught to ask open ended questions, to try to elicit the patient’s feelings and the patient’s symptoms. In their own words, we don’t want to put things in their head and bias them to say, they feel a certain way. And then we are trying to document what they say in their own words as much as possible, using quotations wherever we can, so that the first stage of the encounter with the doctor should be really, our role is both to immediately support the patient and then let them know that they are heard, and that their condition is valid, but also just to be a sponge, and soak in as much as we can on adulterated information. And then work with that, and work with the patient to reach the diagnosis. And you’re absolutely right. In our day and age, physicians are definitely pressed on time, which is very unfortunate, but leads the role being sometimes more confined.


Kimberly Warner – Unfixed Media  16:48

Yeah, I would imagine it would even leave a patient hanging, if suddenly, maybe they it’s scary to share our emotions. And it’s whether it’s with our best friend or with, you know, a stranger or a doctor, it’s scary. And some of these symptoms are very scary. And maybe the patient is just getting into the emotional aspect of it and opes, my 15 minutes is up. How do you handle that? Is there I mean, I’m just curious, can you say, I need five more minutes with this patient? Or do you have to send them out the door?


Marcus Paoletti – Medical Student  17:26

That’s a terrific question. And I’m sure it depends on the physician practice setting, and how their practice is set up. I think that’s probably something that’s very individual. But whenever you are taking more time, there’s always an opportunity cost. And I imagine that if a doctor has a number of patients that have to see taking five minutes, with one may mean taking five minutes less with another, but I think that’s a very situation dependent question and something that physicians of course, would like to work on it. No physician wants to spend only five minutes with a patient, they want to spend as much time as they can.


Kimberly Warner – Unfixed Media  18:02

Yeah, yeah. Go ahead, Cynthia.


Cynthia Ryan – VeDA  18:06

I was gonna say it’s a whole team. Also, you know, it’s not just the physician. The physician has a team. I’m actually Marcus, maybe you can help me with this. I’m speaking from my own experience size of the stimulator patient, but just as a patient, the physician has a team of Physician Assistants and nurses and other allied providers that they that can support them and maybe follow up with the patient after after the appointment, the office visit.


Marcus Paoletti – Medical Student  18:45

Yeah, I imagine that’s true in a lot of settings. I think it’s very situation dependent. But absolutely. Physicians definitely work within teams almost always. And we see ourselves as only one part of that team, and try to do the best we can as that role. But definitely, the the whole is greater than the sum of its parts is what I’m trying to say I guess. And medicine is definitely a team effort these days.


Kimberly Warner – Unfixed Media  19:14

Joy, have you been in a situation or countless times where you you said you went to the emergency room five times? And that’s always a scary place. Do you remember trying to communicate your symptoms while you were also emotionally fraught? And have you learned how to communicate vulnerably and authentically, while you’re in those scary places?


Joy Holten – Vestibular Migraine and PPPD  19:38

Yes, yes. When you’re going in, you don’t know what’s wrong with you. You’re feeling lightheaded? Sometimes in those moments, it is really hard to communicate what you’re feeling. You know, and you have to take that deep breath, focus, you know, communicate what’s going on. With you, some things I have learned from seeing all the different doctors that I’ve seen is, you know, I’ll take notes with me beforehand, a doctor’s appointment, I’ve learned not to just take a big stack of notes, because sometimes doctors are like, whoa, whoa, whoa. So I take a few notes. You know, so it’s not so intimidating. And I try to ask the most important questions first. And what I’ve learned, dealing with the different doctors is, if you’re going to a specialist, I try to only ask the questions for that specialty. Now, you can ask some other questions. And most doctors are very kind in wool. You know, it’s, if it’s not in their field, they’ll say, that’s not my field. But you know, try this resource. So I tried to streamline the questions, and kind of something that Marcus touched on. Not only do you have a team within that doctor, but I feel like I’ve made a team of my doctors, so all of my doctors share information with each other. I’ve learned to use the patient portals in clinics, because many times you can communicate through the portal. You know, so get the feel for your doctor. And I will ask them nowadays, how do you like to communicate? Do you like me to come in? Do you like to do portal? Do you like tell them it? And I’ll just ask them openly and honestly, tell me how it’s best to communicate with you. And it varies. I have some doctors, they’re not very technical. So they don’t use the portal and others love it. They’re like, sent any question through the portal. So I’m learning I’m learning how to communicate with the doctors in just ask if you don’t know, don’t be afraid to ask your doctor a question.


Cynthia Ryan – VeDA  22:04

You are a very informed and proactive patient joy. When you I mean, from, there were several things in what you said that I want to touch on that not every patient is going to be prepared to do is number one, you you identify which provider what questions to ask of which provider. And I think many patients maybe even most don’t know enough about which provider does what to know how to you know, which question questions to save for which providers, but you also follow it up by saying, just if you don’t know, just ask and they will let you know this is not this is not within my area of expertise. This is who you should, who should ask about that. You know, where do you learn about that VeDA is a good source, I think for for one of the things that I like to I like to say about what VeDA can can do to help vestibular patients as we can help you become your own best advocate your own best healthcare advocate by learning about your condition and learning about how the vestibular healthcare system works. So that you know who to see for what, and I think that being part of the the peer support groups also is good for that, you know, you can be talking with other patients about how they have communicated with their health care providers. I think it just you know, the more you know, the more empowered you feel, to communicate with your health care providers. And I think that you, you need that empowerment. So that you can guide the direction of your Kimberly, I can see you want to say something. Thank you. I


Kimberly Warner – Unfixed Media  23:57

do because what about the people like me who lived seven miles from Vita and didn’t know you existed? I want to know. And finally I do. But Marcus, I want to know, dying to know how do you as a physician, help a patient learn to communicate better if she’s struggling to communicate, and she’s feeling awful? She’s having the scariest worst day of her life? How do you slow her down and help her communicate what she needs to communicate? So you can try to assess what’s going on? And then you can send her to VT afterwards.


Marcus Paoletti – Medical Student  24:36

Of course, of course. Well, as a med student, that’s definitely something that I am still working on figuring out and I know that there’s a lot of us out there that would definitely want to hear your perspective on that. Especially Joyce and you’ve had so many different encounters with a variety of physicians. What do you want as a medical student or a physician or any really health care practitioner to communicate with you, or how do you want to be approached when you’re coming to them for these issues, especially when they’re acute. And, you know, you’re already dealing with the nausea and the vertigo that’s making it hard on you already? What would be an ideal for a medical practitioner to make that conversation productive?


Joy Holten – Vestibular Migraine and PPPD  25:22

Yeah, I think the first thing that comes to mind when we’re seeing a physician, is to not have the physician just dismiss your symptoms, to really take note of your symptoms. And to, you know, let us know, if they don’t have the answer that, you know, we don’t know what’s going on with you just yet. We’re going to figure this out. You know, we’re not going to abandon you, we may have to send you to some other specialists. But we’ll work on this together. I think, for us vestibular patients, and I’ve heard the stories I’ve had this happen with some doctors myself, is, there’s just nothing I can do for you, I’m sorry. Go find another doctor. That’s disheartening to somebody in that panic mode. And with this tubular conditions, it also brings a lot of anxiety. So most of the time, when you’re probably going to see patients, they’re gonna have some anxiety, going along with everything else. So I think that’s the most important is just letting that patient know, that they’re being heard. And some way somehow, you know, you’ll help that patient get to where they need to go.


Kimberly Warner – Unfixed Media  26:51

It also makes me think that was amazing joy. And I I agree, I think just knowing that they have your back, even if they don’t have the answers. And Marcus, is there room for touch. And I’m saying and then maybe it’s not allowed unless you’re like, you know, checking their heart rate or, but I found when my physician came close to me and put her hand on my knee and said, I’m here with you. Like, there’s that entrainment and and you know, if the doctor is nervous, then don’t get close. But if the doctor can ground themselves and come close, and actually use some of the, you know, the ideas of entrainment to allow that other person’s nervous system to mirror. Did you guys talk about that in medical school?


Marcus Paoletti – Medical Student  27:40

Yeah, absolutely. And that’s actually one of the things that my med school for example, we address. First, before we learn how to work with a patient with specific exams were first taught, the most important thing to do is to build rapport. That’s what we call it when we’re just trying to actually come to a place where the patient feels that they can trust us and share the information that will help them with their diagnosis and treatment. So building rapport is definitely the foundation that NDA is used to enter a conversation. And that can be physical contact, that can just be letting the patient have their moment to speak uninterrupted. It can be giving them the floor, giving them great eye contact, showing that you’re present, really. And that’s different for every physician, but I think the goal is to connect with the patient so that way, they can feel heard and understood and respected. Yeah, absolutely. And joy. Have you found any specific examples of ways that that’s been able to conveyed to you with your physicians?


Joy Holten – Vestibular Migraine and PPPD  28:49

Yes, definitely. Um, like I said, my primary physician, you know, I could just tell that he cared about all of his patients. Sometimes when I’d go to see him for a checkup, he would ask me, How are you doing? I say, I’m doing fine. He’s like, No, how are really, how are you doing? Because he knew I had a stressful job. And you know, and I would always break down crying because as like, he knows I’m stressed out. You know, and I’ve had other instances, I remember I went to the ER back in 2021. Amazing doctor and an amazing nurse that I had. They were wonderful, because we still didn’t know what was going on. And you could tell they were very concerned. And as I was getting up to leave, I started immediately getting lightheaded and dizzy. And they both came in and talked to me and they’re like, you might be having a little bit of anxiety, attack and anxiety in the doctor himself. He’s like, I struggle with anxiety. I was like, wow, okay. And I spoke to the nurse. She’s like, Yeah, I struggle with anxiety. You too, and it was just so calming. And I knew that they were busy. It was at the height of one of, you know, a spike in medical issues. And so they were so kind. And I think sometimes just taking that moment to be real, like a real moment with your patient just calms the patient’s nerves down. For me, it did. I was like, okay, okay, this is I’m not the only person that goes through this. I think I can get through it. And those little moments help. They do.


Cynthia Ryan – VeDA  30:36

Yeah, it’s it’s about more than just explaining your symptoms. It’s about conveying your whole experience of being a vestibular patient. And Marcus is, is there anything that that what are the things that you think patients can do to better help you understand their their whole experience and not just their medical symptoms?


Marcus Paoletti – Medical Student  31:02

Yeah, absolutely. Well, hearing joy at the beginning, I think was for this podcast was kind of a great intro to what that could look like, with her really illustrative language that encompass not just the symptom names, but also just how they affected her when when people speak openly, and just use their own words, instead of using medical language or anything like that. I think it’s just best to be open and let it flow as naturally as you can.


Kimberly Warner – Unfixed Media  31:36

Do you like to hear even how it’s affecting my like, what if I said, Oh, and my, it’s affecting my relationship? And I haven’t been able to work my eight hour shift? Or? I mean, do you also like to hear how it’s affecting our lives?


Marcus Paoletti – Medical Student  31:52

Yeah, well, I imagine that a physician would take that into account when they’re developing a plan, because the physician is not only thinking in their mind about what conditions you might be dealing with, but also what the next step will be, to approach that what their actions and plans are going to be. And that varies based on how it’s affecting your life. Many physicians, their goal is to improve your life and the way that you need to improve not in a cookie cutter way. So telling the provider how your life has changed from this condition can really help them come up with the appropriate action plan for you.


Cynthia Ryan – VeDA  32:33

So I have a question. That’s kind of a little bit off topic. But I know that talking about mental health as a sensitive issue, you know, patients don’t want to be told, Oh, you just need to see a mental health care provider because that can be devaluing. But it can also actually, you know, we’re talking about, you know, a whole person’s how this affects someone’s whole life and dealing with the anxiety. I know, dealing with the anxiety of vestibular disorder can really help a patient be better prepared to to then enter treatment and deal with the physical symptoms. How are you taught Marcus to, to coach patients on you know, whether or not to see a mental health care provider? And, and, you know, how do you frame that?


Marcus Paoletti – Medical Student  33:29

I think that’s definitely an advanced topic that I’m not ready to discuss yet. But hopefully you bring me on in a couple of years after I’ve gone through rotation. One of my first ones will be psychiatry, so hopefully, I’ll get some exposure to that and can come back with the answer. But joy, that’s something you experienced, for example,


Joy Holten – Vestibular Migraine and PPPD  33:49

yes, I did. My first neurologist that I went to, he said, You need a person or a pill. He just told me that you need a person or a pill. Okay. And so I was like, well, I’ll, you know, I’ll get a therapist. Okay, so I did that. And I was hesitant to try an anti anxiety medicine. And I think a lot of us in the vestibular community are because medicines, what do they say may cause dizziness. You want me to take a medicine that might make me dizzy? I’m already dizzy. So, um, you know, I kind of pushed back on that and I thought, let me do a therapist. Okay. So again, 2021 rolled around. The doctors are like, we all think this is anxiety. And I feel like once I learned what anxiety actually does to your body, in that it’s the flight or, or the flight or fight response in your brain. Once I learned the technical issues, I was more open to taking the medicine I think that was kind of the turning point for me when I really understood. And what I did was, I went ahead and just met with the psychiatrists, because they know medicine, they know, medicine for mental health for anxiety, where every doctor I went to was giving was trying to give me a different anti anxiety net, I didn’t know which one to take. So I met with someone who specialized in the medicine, and that made me feel comfortable. For me, everyone’s different. So that was when I took the medicine. So for me, I would say someone really taking the time to explain kind of what anxiety is, and not just telling you, you need to take a pill. That was the difference for me.


Kimberly Warner – Unfixed Media  35:53

And Marcus, I would add to that, I think that it’s important, I wish I had had a physician say, Hey, this is chronic now. And because it’s chronic, it’s affecting your life. And some people find it really helpful to have a therapist in their life, to address the ways that it’s affecting you socially, in your career, all of those other things. And I’m not saying the root cause of this is a mental health disorder, but I’m saying that it is affecting all of these other areas of your life. And so there actually are chronic illness therapists now, I’ve found many of them that really can hold our hands as we navigate the medical territory, and help us work with the real interpersonal relationships and the career and identity aspects of the illness. So even though you haven’t taken psychiatry yet, I think you I give you permission to say, hey, therapist can be really a really good friend.


Cynthia Ryan – VeDA  36:59

I think that’s well put Kimberly, it’s about as you were saying, Joy dealing with the the anxiety part of it, that is a physical issue, you know, the fight or flight response. You know, it’s it’s an automatic response that you can’t control. It’s so it’s it’s technically a physical problem, but it’s also about managing the stresses of your life that are imposed by chronic illness. So both are important. So, joy, I’m curious, did you use any, you’ve explained your, your symptoms? So well? Did you use any resources to help you figure out how to do that? Or did that just kind of come naturally to you?


Joy Holten – Vestibular Migraine and PPPD  37:45

Yeah, those were my terms that I use. Now kind of going through VeDA. You know, there is, I believe on the VeDA website, some help, that will kind of give you some definitions of some of the symptoms, which is helpful. And I’ve found some other online resources. That kind of explains, you know, I don’t have the vertigo, the spinning around, so I don’t have that type of vertigo. So I know the difference between that but I have researched some online through VT and other resources, kind of what all of those symptoms are a little more technical. Yeah, I don’t know, brain scrambles, really a technical word,


Cynthia Ryan – VeDA  38:32

but we should add it to our list. Well,


Kimberly Warner – Unfixed Media  38:39

i i What this is such a fantastic conversation, I’m learning from it. And I hope you guys are too i i want to know if there’s any sort of take home message joy to other vestibular patients, do you have any sort of universal take home message to help them communicate better with their their health care practitioner?


Joy Holten – Vestibular Migraine and PPPD  39:05

Yes, be your own advocate. Don’t be afraid to speak up during a doctor’s visit. Like Marcus said, most doctors really want to know what’s going on. They really do. Be your own advocate. You know, have a journal so you can kind of keep track of when something started. How many times did you have that? Keep a medication list handy. So that way when you’re going in, you have these answers ready. Because again, it’s not doctors fault that they only have limited time that we’re going to remember everything in that visit. You know, and again, we always say have grace with ourselves. But sometimes we also have to have grace with the physicians as well. You No, just build that rapport with your physician. And if you have a physician where you’re not getting what you need, it is okay to get a second opinion. You’re not alone, reach out to VeDA reach out to an online support group. And there’s people willing to listen to you. And a lot of times, you know, I know when I’m on different groups and someone’s having trouble finding a physician, I go to the little VeDA physician search, and we’ll try this one. So be your own advocate and don’t give up, you will find your medical team that will help you.


Cynthia Ryan – VeDA  40:46

That’s the perfect message. I love that. Marcus, what do you think? What’s your what’s your take home from today that you think might improve your clinical practice? When you know when you’re seeing patients?


Marcus Paoletti – Medical Student  41:03

Yeah, well, this has been such a great conversation. And I’ve learned so much. I think some of the things that I’m really going to take away from this conversation are that the stimuli or disorders present in such a colorful variety of ways. It’s, it’s not enough to just wait for the keyword to pop up that you’re waiting for, you need to really let the patient fully explain how they’re feeling. really explore what’s going on their life and how it’s affecting their activities of daily living, to get a really great holistic picture, to help them not only come up with a diagnosis, but then move on from that to what the next best steps are. And, you know, we have a variety of training paths within medicine. And I think it’s important to be fully comfortable that if you don’t know the answer to a patient’s problem, accept it. And instead of admitting defeat in a pessimistic way, make sure to share that. Okay. I don’t know the answers, but let me help you find someone who does? Yeah, I think.


Kimberly Warner – Unfixed Media  42:13

Yeah. Don’t you think Marcus is going to make an incredible doctor?


Cynthia Ryan – VeDA  42:18

Absolutely. To? We’re gonna get him on our directory. Yeah,


Kimberly Warner – Unfixed Media  42:25

I can feel your compassion and your curiosity and your real intention to be there with the patient. So I thoroughly have faith in your ability to do all of that and more as a practitioner and joy. Wow, you are like the gold star patience. I mean, I I really do think there’s a lot that you have to teach and offer. I’m so glad that you’re doing a podcast. Because I think that there is a lot of wisdom that you have learned from your personal experience and now are sharing. So I just want to tell you both from my heart, thank you so much for sharing this conversation. And I’m sure Cynthia, you probably feel the same way.


Cynthia Ryan – VeDA  43:15

Absolutely. Marcus, I want to thank you for your interest in helping vestibular patients, you know, that I have heard from, from many physicians and from patients who have seen physicians that that they don’t really the stimulator patients Dizzy patients are messy, and they don’t all want a lot of vestibular patients coming through their office. So I love that this is an area of interest that you are exploring and and you’re going to bring your expertise to help vestibular patients down the line. I really appreciate that. Enjoy.


Marcus Paoletti – Medical Student  43:58

Thanks for having me on. I learned a lot and I’m looking forward to learning more.


Kimberly Warner – Unfixed Media  44:03

Thank you guys.


Cynthia Ryan – VeDA  44:05

Thanks for tuning in to ICU this month.


Kimberly Warner – Unfixed Media  44:08

We hope this conversation sparked a new understanding of the vestibular journey. And for all of our patients out there leaves you feeling just a little more heard. And a little more seen. I see you.