Tinnitus: The Ringing in Your Ears

Most people have probably heard a high-pitched whining noise in their ears at least once. It comes and then it goes, but it’s temporary. However, for some people, that ringing, hissing, whistling, buzzing, or clicking sound is constant. That noise that isn’t a noise is called tinnitus, and it’s generally caused by damage to the auditory system.

In this episode of the ICU ("I See You") podcast, the discussion explores the connection between tinnitus and hearing loss, common concerns, and possible treatments and coping strategies. Hosts Cynthia Ryan (VeDA Executive Director) and Kimberly Warner (Unfixed Media Founder & Director) are joined by Dr. Christina Shields, AuD, and Steve Schwier, who shares his personal experience with tinnitus resulting from Meniere's disease. Steve vividly describes the impact of tinnitus on his daily life and the disorienting effect it has. Dr. Shields explains the nature of tinnitus.

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

About the Guests:

Diagnosed with Meniere’s Disease in 2013, Steve Schwier had been able to do little at that time but stay on his couch and manage his symptoms. But in 2020, Steve decided to get up and ride his bike across America to be the voice of a suffering, silent minority and bring awareness to Meniere’s Disease. His difficult and grueling ride is chronicled in his memoir, “On the Vertigo: One Sick Man’s Journey to Make a Difference.” Despite the horrendous nature of Meniere’s disease, Steve tells his story with humor, grace, and heartfelt reflection.

Dr. Christina Shields, AuD is an Assistant Clinical Professor in the Department of Hearing and Speech Sciences at the University of Maryland in College Park. She received a bachelor's degree in Hearing and Speech Sciences, as well as her Clinical Doctorate in Audiology from the University of Maryland. She completed her clinical fourth year placement at the University of Maryland Medical Center in 2013. Her clinical background includes diagnostic audiometric testing, amplification for adult patients, vestibular assessment, and tinnitus, hyperacusis evaluation and management. She currently teaches undergraduate hearing and speech courses and supervises graduate students in the clinic. 

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

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

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

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

Transcript

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. Wow, that was annoying. Oh my god. Most of you have probably heard a high pitched whining noise in your head at least once it comes and then it goes and you wonder where did that come from, but you don't worry about it because it's temporary. However, for some people that ringing or hissing or whistling or buzzing or clicking sound is constant. That noise that isn't noise is called tinnitus or tinnitus. And it's generally caused by damage to the auditory system. So today we're going to learn about tinnitus or tinnitus, love to have a conversation about which which one everybody uses, and how it affects the lives of those who live with it. 24/7 So I am going to start by introducing one of our guests, Christina shields. Dr. Shields is an assistant clinical professor in the Department of hearing and speech Sciences at the University of Maryland in College Park. She received a bachelor's degree in Hearing and Speech sciences, which I have to really slow down to pronounce because it doesn't work well with my speech impediment, I guess. As well as her clinical doctorate in audiology from the University of Maryland. She completed her clinical fourth year placement at the University University of Maryland medical center in 2013. Her clinical background includes diagnostic audio metric testing, amplification for adult patients that's hearing this tubular assessment that's balance and tinnitus or hyperacusis evaluation hyperacusis being the when sounds are really loud hyperacusis evaluation and management. She currently teaches undergraduate hearing and speech courses and supervises graduate students in the clinic. Welcome, Christina. Thank you

Dr. Christina Shields, AuD, CCC-A  02:40

for having me.

Kimberly Warner - Unfixed Media  02:42

Welcome, Christina and welcome Steve, our other guest I'm really excited to introduce Steve many of you already know him from life rebalance Chronicles. Steve was diagnosed with Menieres disease in 2013. He had been able to do little at that time, but stay on his couch and manage his symptoms that included debilitating tinnitus, and brain fog. But in 2020, Steve decided to get up, ride his bike across America to be the voice of the suffering silent minority, and bring awareness to maneras disease. His difficult and grueling ride is chronicled in his memoir on the vertigo, one sick man's journey to make a difference. I have the book right on my bookshelf here and I absolutely loved it laughed, cried everything in between. Despite the horrendous nature of manures disease and tinnitus, Steve tells his story with humor, grace, and heartfelt reflection. Thank you for being here with us, Steve. Let's just jump in. Some of you already know Steve's story. But Steve, can you tell us a little bit about your first experiences with tinnitus? And there's a lot of other symptoms that you deal with, but we're going to focus today on the tinnitus.

Steve Schwier - Vestibular Patient  04:03

Yeah, thanks for having me. Um, it's I was really excited to be invited to do this because I think out of all the symptoms I deal with tinnitus is probably the most annoying, and it's the most constant symptom I have to deal with day in and day out. So it's kind of the, it's kind of the reason I never forget that I'm sick, because that's always there. And so whether I'm having a dizzy day, or I'm feeling a little off with other symptoms, that tinnitus is a constant reminder that you're having to deal you're gonna have to fight through today, again, and it's day after day after day. And yeah, in 2013, I was diagnosed with Menieres disease, but in 2012 is when I got tinnitus, and that was the very first symptom that showed up. And it was and I had that for a year before I had any other symptoms or my other problems. So it was like the wake up call. And I was at A friend's birthday party. And you know, it wasn't super loud. We're all old, she was turning 4056. So it wasn't a raging rage party, it was just, you know, having some cocktails, listen to a little bit of music and just chatting with really good friends. And halfway through the evening, just in a split second, it just sounds like a jet plane just flew right next to my head. And it just stayed there. And, like, I looked around the room thinking, does everybody hear it? You know, everybody's still talking and chatting. And I'm looking around, like, Does nobody else hear this noise? This is like so loud. And in that split second, I got tinnitus and lost 70% of my hearing at that point at that instant and then now I'm down to losing 90%. So I'm slowly progressing Am I Am I hearing also. And the other thing that showed up, which, which we mentioned earlier, was the hyper Kosis of my right ear. But the tinnitus in my left ear has been a constant companion for over 10 years now. And it's it's changed my life dramatically. My quality of life has changed dramatically. And so wow. Yeah, it's, it's, as soon as I open my eyes in the morning, the rings there, you know, it's the rings there. When I the last thing I hear before I fall asleep is the ringing so it's just a constant evil companion. That just the way I describe it to people so that they can kind of grasp it a little bit is It's like someone tapping you on the arm. And it just never stops. And you just want to be like, well, you just stop. Stop it, you know, and after a while it's like water torture to where you start going insane. And it's just that constant. Listen to me. Listen to me. Listen to me. Listen to me. Listen to me. I'm here I'm here listen to you. In the way that affects your life is drastic. Because that right now my tinnitus is so loud that I hear it at the same volume that I'm hearing you guys. So it's a 5050 thing. So I'm having to concentrate through that that noise and with my tinnitus. Most of the time it does it, it has different levels and different sounds. But most of the time, it's like a low, they call it brown noise. Then there's a high whiteness. And then right in the middle is two or three octaves of ringing that's like, just like a whistle like. So at any given time, I'll have three or four those going on all at the same time. And if I really think about it, I can I can separate them into like, okay, there's that there's that there's that there's that. But I tried to not I just want to I just kind of let it all hit me most of the time. I don't spend a lot of time trying to focus on it, because it does, you know, there's nights I've been laying in bed, and I you feel like you're going insane. Because you can't get that person to stop tapping. You know, it's just like if you would just stop for five seconds. And the other thing that's tough is I haven't heard silence in over 10 years. And people take that for granted. Because silence actually is a noise. It's a silence has a quality that helps you help your brain relax, you know, there's solitude, there's meditation, there's things that you can do with silence that are very, very healthy for you. But I don't have that option. Well, I have to figure other ways to get through my days. While all this is going on in my ear. So that's my story.

Cynthia Ryan - VeDA  08:38

Wow. Steve, you remind me when you said I can't turn it off, it reminded me of in my car. When my husband and I are going on a we're going for a hike. We're in the car for a couple of hours. And our our fan has sometimes it has this whining noise you know, and, and it's really annoying to me. And I said to my husband, do you hear that? And he's like, No, because he has tinnitus and he can't hear the whining, it just blends with his tinnitus. He doesn't hear it. And when it gets really bad, I just turn off the fan but you can't turn off you don't have a switch that you can do that with your with your tinnitus. And it's got to be so frustrating.

Steve Schwier - Vestibular Patient  09:27

It's, it's really, it's hard to explain. It's odd because I have this roar in my ear and it and a lot of times it will match something like the noise of a fan or something to where I don't hear, you know, a certain noise that's in my bedroom. Like if I turned on a fan in my room, it might kind of equal out a little bit right and that won't bother me because this is worse so I just don't even really hear the fan. You have someone drops a fork and fork and my sink two rooms away. That'll feel like A lightning bolt just hit me. So it's really hard to explain how tinnitus and the hyper Kosis work together because I'll be in a room with my wife. And I have to keep saying, say that again, huh? What? You know, but then I'll hear something on the TV. That's two rooms away, and it's on really quiet. But I'll hear that totally clear. Yeah. And it's annoying, because it's like, it's like, you'd never feel like you're really present with a conversation because you're always hearing other things that are louder than what's going on. Right? Right in your face. And it's bizarre. It's a bizarre feeling. You don't feel connected. You feel very disconnected from your surroundings you feel you know, you feel disconnected when you're in a bar or allowed restaurant. If I go outside, I feel disconnected because a plane will fly over and I hear it but I don't know. I can't tell what direction it is. You know, like the like, yesterday, a helicopter flew by our neighborhood. And I was sitting on our side yard. I heard it and I had no, I just lost. I have no, no ability to be like, Oh, it's coming from the right or the left. It just comes in my right ear. And it just is Yuna. It's not like yeah, like I don't hear in stereo disorienting. Yeah, so it's disorienting, and it can be in if it's a weird noise. I don't understand. It'll kind of panic a little bit. Yeah. And like, if I'm with Michael, like, what was that noise? And she's like, Oh, it's just a dog barking and I'm like, oh, like, I thought it was some right behind me, you know. So it's very disorienting. And it takes a lot of energy to be present and really focus through the tinnitus to be involved in a conversation even as simple as this where I'm in a quiet room. So it's a

Cynthia Ryan - VeDA  11:47

battle. Yeah. So Christina, can you now that we've we've heard the what the experience is a little bit Can you tell us what tinnitus is? And what causes it? Why why is Why is Steve, why?

Dr. Christina Shields, AuD, CCC-A  12:05

So Cynthia, you already kind of defined tinnitus. So tinnitus is a sound that is perceived in the ears or head when there's no external source. So tinnitus is generally associated with changes in the auditory system. So in Steve's case, right, there's a change in his inner ear. And that inner ear is filled with fluid. And that inner ear processes Hearing and Balance, so many years is believed to be due to an overproduction or under absorption of this fluid. And so in general, there's too much fluid in this inner ear system. That means that there's a change in his auditory or hearing system. And so it's not uncommon to have hearing issues, like fluctuations and hearing or tinnitus, and also balance problems as well. So I like to sort of Christina,

Steve Schwier - Vestibular Patient  13:05

Christina, like, real quick, like does, the stuff I've heard kinda is it's kind of like my brains defense mechanism against my ear being bad. Yeah. Like the noise isn't coming from in my ears. That noise is actually coming from my brain, because it's saying, you hit your left ear is trying to attack your body. So we're going to put this wall of noise up is that is that along? Is that fair?

Dr. Christina Shields, AuD, CCC-A  13:31

So I like to call tinnitus as a health barometer, right? So I like to call tinnitus as, hey, it kind of tells your body that or your brain that something is happening, that might not be it could be a temporary change, it could be a permanent change, it could just mean just a change in general. So if your tinnitus increases in volume, it could mean maybe there's a flare up in your money years, or maybe there's increased stress. So I like to call tinnitus, a health barometer.

Cynthia Ryan - VeDA  14:08

So speaking of that, sorry, I'll just like a note, Steve, you're a musician, my husband's a music musician, and also has tinnitus. So for someone like that where you were you were talking about how Menieres and tinnitus go together? How about the we hear so many musicians who experience tinnitus and the associated hearing loss? Can you talk a little bit about that connection?

Steve Schwier - Vestibular Patient  14:36

Yeah, I mean, my first concern when I first when I went to my very, very first appointment with tinnitus, you know, my first question was, did I do this to myself by playing loud music my whole life driving heavy equipment. You know, I've been, you know, when you're young and stupid, you just you don't you think you're invincible. So I'm just like, well, maybe I made some decisions. MUSIC Well Eyes are a career choice. Why's that? Cause this, and the doctor. He looked and said, my eardrum is fine. And he said there would be scar tissue on your eardrum if you if it was caused by music or something. So it was kind of a relief in one way. Because I was like, Okay, I didn't just totally screw myself up, you know, so I can't I don't have to take the blame for this and feel guilty about it yet. He's like, but it's never gonna go away. And I was like, what, and I'm a musician, you know, and I can't hear music anymore. That sounds right at all. Unless it's a song, I really know well, and my brain can fill in the spots that my ears are missing. And so like, if I listen to a ball I've never heard of before, it's not enjoyable because my brain is trying to figure it out. And it can't keep up with with the song. So a few months ago, I actually I took 10 years off of playing music. And just a few months ago, I decided to try to tackle it again and started playing again, the way it affects me now. And this is why Huey Lewis had to cancel his last tour why Ryan Adams had to call a stop to some of his tools and music and stuff is because it's it's kind of like you're underwater. And you know, the way I hear music would be like if you if you submerge yourself underwater, and someone plays music above the water. So it comes it kind of comes through as a wash, wash. You know, like you kind of know, it's you're hearing music, but your brain isn't hearing it right, because the tinnitus is fighting it. And my brain doesn't want to expend the energy, I guess, to really listen to it. And it's been a struggle I played last night for an hour at a new club that opened down the street. And just one hour, I was completely exhausted. Like it completely exhausted me because I have to think about what I'm playing, I have to think about what I'm hearing, I have to try and listen to the other guy who's playing. I have the noise from the bar. And it's, it's it's like just being kicked over and over again. But I'm going through it because it's something I don't want to lose. But it's something that I'm still not fully enjoying like I used to. But I know it's healthy. So I'm gonna keep doing it.

Kimberly Warner - Unfixed Media  17:16

Steve. Yeah, Cynthia, does that answer your question? Because I know your husband's curious too, about that.

Cynthia Ryan - VeDA  17:24

Absolutely. Absolutely. And also, I know you had a question, and I have,

Kimberly Warner - Unfixed Media  17:29

I just want to reflect I mean, one of our questions is like, how does this affecting your everyday life, Stephen, you're doing a great job already of sharing how it's affecting your life, I don't think it takes a rocket scientist to see and hear that this is affecting every aspect of your life. You mentioned the hearing loss, you mentioned the how you don't have silence and how that doesn't really allow your nervous system to relax and how it's hard to be present. Because that's it saps so much energy from you, is there anything else? Just on a practical level? How is this affecting your everyday life?

Steve Schwier - Vestibular Patient  18:05

Yeah, I mean, the first thing I had Well, at first, I was in denial. You know, when someone gets a chronic illness for life, you know, I think everyone I went straight to denial, like, it's not that bad. And it'll probably get better get or go away eventually. But after 10 years, you realize this is the way I am. So I had to learn a lot of patience at first, and patience with myself, because I'm very hard on myself. I like I expect myself to be helping people, I expect myself to be a good friend and a good husband and a godfather. And so I had to kind of lower those expectations a little bit and be like, you know, you just need to figure out how to be patient with yourself. Because if you can do that, then you can be effective with other people and have purpose for other people. I think it the way I deal with it in everyday life is I have to be very deliberate on what I choose to do. You know, if if I'm going to play music tonight, that I know that for this afternoon, I really need to just rest a lot because I know that the amount of it's gonna pull out on me. So if I'm gonna go in and have a discussion with my wife, I have to go in with purpose. And I have to go in thinking, Okay, I need to go in and really be present as much as I can and be personally purposeful, and do my best to listen, stay in the conversation because with the tenants, it's like I said earlier, I'm listening to it right now. And I'm trying to listen to you guys. So it's this tug of war that goes on. And so the things I would tell people is you just have to be very purposeful on the decisions, what you're going to do, I can't get up and work an eight hour job, come home, you know, crank up the stereo then go play in a bar till two in the morning. That's not my life anymore. And it was for years and years and years. You know, now my life is I get up and I'm like Okay, I'm owed the dishwasher today. And what do I, what can I? How do I balance my day so that I can get to the end of the day and not be completely wiped out and have something left? You know? So I guess, I guess it's given me a lot of purpose because the brain fog is I think a lot of my brain fog is not from veneers. I think a lot of it's from tinnitus, because listening to this and listening to you guys, it's hard for me to keep a train of thought I can't multitask in my head. That's the basic, I mean, I, I can do one thing at a time I can do one thought I can do one frame of thought at a time. I can do one task at a time, but I can't, right now be thinking what I'm going to be doing next Tuesday. It just, there's no room in here for that anymore. So I live a very simple, moment by moment task by task, discussion by discussion. That's how I manage my days now. So that's what my life looks like. It's a lot of thinking how to slow down and pick my battles.

Cynthia Ryan - VeDA  21:03

We're glad you're here with us today. I I think I told you guys, my husband. He's had tinnitus for years and years, many, many years. He only recently went into an audiologist to, to for an evaluation. And he was convinced when he went in that he did not have hearing loss. And when he came back, he's like, Oh, I guess I have some hearing loss. Christina, can you tell us about how tinnitus is diagnosed? And in that connection with hearing loss?

Dr. Christina Shields, AuD, CCC-A  21:38

Yeah, so tinnitus is typically diagnosed by a medical professional, whether it's a primary care, ear, nose or throat doctor, or an audiologist. So first, the medical professionals like your primary care Auntie will rule out any medically treatable condition. So they take a look in your ears and make sure they don't have wax in their ears. And if they do, they remove it, then they can refer for a hearing test done by an audiologist. So you will we will put on headphones, the patient is going to press and release on the button every time they hear it. Yeah, Steve knows, repeating back some words. And then sometimes if you're referred for an for a tinnitus evaluation, we will measure the loudness and the pitch of your tinnitus as best we can. So there's a high correlation between tinnitus and hearing loss. That doesn't mean you have to have hearing loss to have tinnitus. But like we said earlier, right, tinnitus is likely due to a change in hearing so that change can be anywhere along the auditory pathway.

Kimberly Warner - Unfixed Media  22:52

Interesting. So if this sound is there all the time, I'm imagining that there are some techniques that people use and I've even heard that there are like some apps now where you can try to like drown out the sound. Steve, are you using anything to try to to mask or treat the tinnitus? I'm gonna say tinnitus now saying tonight is but I want to be cool like you guys. But I want to know, like after you've been living this with for so long, so what are some of the things that you've done to try to mask this? Well,

Steve Schwier - Vestibular Patient  23:31

I have a hearing aid my left ear, I don't think it really helps me hear better, but for some reason I feel more balanced with it. So I think it's kind of helps me, like I feel naked without my hearing aid. I put it in right when I get out of bed and I take it off right before I get asleep. Because if it's not there, I noticed a difference. Now I don't think I hear better because it's in there. But it definitely kind of allows my brain to kind of think, Okay, we've got things going on on both sides. This the sides not completely dead. And so that's what I that's what I think because it doesn't definitely does not help my hearing much. And if feedback is always feeding back and stuff during there's two answers that during the day, in my hearing aid, I have an app on my phone and I can I can pump in white noise, I can pump in brown noise I can pump in, there's like 10 different options that are supposed to like help help match the tinnitus so that your brain can kind of relax a little bit and none of them have ever worked for me and they actually make me dizzy. So I quit using those years and years ago, but I did experiment with a lot of that. So like if I wanted to right now I could put white noise in here but it would start making me feel like I'm spinning. So I don't know if it's because I haven't really well so so I don't know it may work better for somebody that just has tinnitus or hearing loss. But with my other health issues, I think it makes it worse. So I quit trying to mask the noise during the day. I just go through the day and just try to ignore As best I can, sometimes I can, that a lot of times I have to just live with it and whatever's outside here, then now at night, that's a different story because I can't lay in bed and just listen to this, like, I just can't I've, it's just it's insanity. So the only way I can actually get to sleep anymore is I put an iPod on my right ear. And I put music on, or I put a TV show on, or something that's right inside, you know, so my wife's laying next to me. So I can't just like have a TV cranked up. So I do it all on my phone. And so I'll just like something, and I, this is how I've tell myself it works. That if I listened to music, or listened to a TV show or a movie, I just, I would listen to it until my brain is just so exhausted. It's just like, I'm going to bed I'm trying, I'm just turning off. So I just have to distract myself at night until my brain just gets so tired of listening to the 10th episode of Big Bang theory in all the hours that my brain just gives up. And I just know I have this feeling that I get malware, it's just like, okay, my brain is giving up so I can go to sleep now, but I have to distract it. Or I just have to lay and listen to that noise. And that's it just sucks. So that's my coping during the day is just push through my coping at night is just to distract with, with something in my right ear that'll, you know, give my brain something to think about.

Kimberly Warner - Unfixed Media  26:33

Wow,

Steve Schwier - Vestibular Patient  26:34

it's probably I'm sure. I'm sure it's unhealthy to like wear your brain out till it's done. But that's the way I live. Now.

Kimberly Warner - Unfixed Media  26:41

I don't know, let's hear from Christina on that, maybe not.

Dr. Christina Shields, AuD, CCC-A  26:47

So Steve is right hearing aids are typically the first and most common Tinnitus Treatment. Because if you have hearing loss, you want to treat the underlying hearing loss, right, by bringing back sounds that you're hearing loss has been filtering out, we are giving back some real sound to listen to. So by giving you real sound to listen to, we're reducing that internal tinnitus sound that you hear in your head. So hearing aids can have that white noise feature or that tinnitus feature that Steve has in his left hearing aid. And for him, that doesn't seem to be helpful. But for some patients, that's really helpful. Because again, that also reduces that tinnitus perception. We don't want to cover that sound, because you can't learn to ignore a sound that you don't perceive. Right. So what I do is habituation, right with sound therapy. Another thing that patients can report is also difficulty sleeping at night. So Steve reported wearing a earbud in his right ear listening to some TV shows. He has a partner that doesn't like sound to be played. So there are other devices that can be used. One is called a sound pillow. Steve, have you heard of a sound pillow. So it is a pillow that has little speakers embedded in it. So when you rest your head, that sound can be actually really soft, because it's next to your better hearing ear. And it can come with kind of like an iPod mp3 player that has tracks already uploaded to it. So if you get tired of the Big Bang Theory, you can listen to other sounds from the pillow.

Steve Schwier - Vestibular Patient  28:46

Yeah, what I'll do, Christina real quick, what I'll do is like if I don't, if I don't want the earbuds in or I'm laying on my right side on my good ear, like the earbud gets sore. So I unplug it and I'll take my phone and just slide it under my pillow and turn it really really down so I can just hear it. And I love my TempurPedic pillow because it's really, it's dense and heavy. Like if we go to a hotel, and I lay on a pet a pillow that has like down in it or cotton in that or whatever. And I lay on my good ear. I just hear the scratchiness and so my TempurPedic keeps me from having to it's just a dead thick pillow that doesn't make noise. But I do slide my phone sometimes. So I kind of make my own sounds. But I'll look into the music.

Dr. Christina Shields, AuD, CCC-A  29:30

That's awesome. See, there's also some like really soft headbands that also have speakers on it. I don't know if you're going to like them, because I don't know how good the speakers are. Fidelity wise, I know you're a musician. So sometimes the speakers aren't as good but you can also try using some soft headbands. That's helpful. Christina, you

Kimberly Warner - Unfixed Media  29:55

mentioned that sound therapy. Can you explain what that is? I'm not I'm not even sure I think You use the word habituation to maybe they go together?

Dr. Christina Shields, AuD, CCC-A  30:03

Yeah. So sound therapy is just using external sounds in the presence of this bothersome sound, right, which is your tinnitus sound. Yeah, so we're just using this external sound, whether it's white noise, Pink Noise, crickets, whatever if you can find any of these sounds, on applications on your phone. And so we just use those sounds, mostly in quiet settings, because that's where tinnitus seems to be the most bothersome. And there's some more recommendations that you give out, when you meet the patient and get a better idea of their needs.

Cynthia Ryan - VeDA  30:43

How about, you know, you're talking about sound therapy and habituation? What about, you know, cognitive behavioral therapy or other types of counseling for changing your relationship to the noise? You know, habituation is essentially telling your brain that this is okay. This isn't a bad noise. And yeah, how do you? Is that something that you recommend? Or any other? Steve, have you ever tried that?

Steve Schwier - Vestibular Patient  31:19

No, not really. I think, for me, it's not really the auditory stuff I struggle with as much anymore. It's more of the emotional stuff. It's, it's I'm feeling discouraged. You know, at first, I got really angry, you know, the why me, I had to go through the whole grieving process. And so I have a couple apps that I will listen to sometimes the help the habitual, you know, like, but I don't know, it's just like, I wake up the next day, and it's still bad. And I just get kind of get discouraged. And, you know, I've had so many people ask me, Well, how did you fix your tinnitus? And I'm like, haven't, you know, so it's me, it's more the frustration that I have to battle through, you know, than it is like, and I don't know, maybe I do need to retrain my brain to accept the fact that this is the way it is, but I think I just fight it. I think I just like, I'm just gonna take it head on, and just deal with it. Deal with it, you know? Yeah.

Cynthia Ryan - VeDA  32:23

I think everybody, obviously, everybody's is different in their coping strategies. And, Steve, I don't know if you're familiar, or you do you know, Glen Schweitzer, who wrote the book, book rewiring tinnitus. So he talks about kind of, instead of ignoring his tinnitus, diving into it, and kind of embracing it, that's, that's what works for him. I'm sure that it's different for everyone. But I think that, that having someone to talk to helps you figure out what works for you. That's, you know, I'm talking about counseling,

Kimberly Warner - Unfixed Media  33:01

I think, relate to that. Oh, just I'm just gonna say I think I can relate to that with the dizziness for me, and maybe how Glenn express this as well, where my fighting it for so many years was jacking up my nervous system, because I was constantly a little bit in this fight or flight. So when not for me when I finally just said, Okay, this is here. This is your just say, let's just try to coexist with it. My nervous system finally calmed down. And that was very, very helpful. I don't think it's the solution for everybody. Steve, I know you're a fighter, you've got that warrior spirit, which I think is might be the right approach for you, too. Yeah,

Steve Schwier - Vestibular Patient  33:45

I think it's really important for me to surround myself with people that that try to understand, they might not know exactly what I'm hearing, and they may not know how annoying it is, but at least the like, my wife is willing to give me the benefit of the doubt and be like, Okay, I've asked you the same question five times and you're still saying, huh, you know, and she'll, she'll give me that freedom. You know, where if I'm in a public meeting someone I've never met before, then I really battle you know, my, you know, battled to concentrate and concentrate on that conversation. But yeah, my, one of my best coping skills, is just being able to be in the room with people that get me you know, and allow me to just be this way. And all my close friends, my entire family, whenever we go anywhere, they always walk on my right side. Wherever we go, they just know automatically that just walk on Steve's right side sit on Steve's right side when we go to a restaurant, they let me pick the chair that I think I can sit in here the whole table the best, you know, so I have very accommodating people around me and that's really helps me a lot. And being a musician. The first thing I did was break up my bass to find out what his tone was. And it's a B flat most of the time Oh, Like I've narrowed it down to, that's the taming noise that just as a consequence of beef, so you're a musician, you can actually figure out what what note you're hearing Yeah.

Dr. Christina Shields, AuD, CCC-A  35:14

to circle back to Cynthia's question about cognitive behavioral therapy. So cognitive behavioral therapy is a form of counseling that helps address that emotional distress that can accompany tinnitus. So it's a type of problems focused and action oriented intervention that is done by a mental health specialist. So that's not done by an audiologist. But I do refer to I do refer patients for cognitive behavioral therapy, if I feel like there's a really strong emotional component.

Cynthia Ryan - VeDA  35:51

Yeah. Yeah. And I imagined that. Yeah, I imagined that's very common, actually, the emotional component, and especially for certain people. Yeah.

Kimberly Warner - Unfixed Media  36:05

I see, when you described initially, the pulling the nagging, and someone tapping on you constantly, I just recently interviewed a young gentleman with schizophrenia, and he has three voices that are constantly there. And it just dawned on me that there is a real parallel here. Because when he was even talking to me, he's learned to mouth read, because he needs to know that the voice is he's hearing our, you know, this is my voice. And then these are the three voices that are going on in his head. And it's, like you said, it's constantly there, and really, really draining, to have that to try to filter that out. So, you know, you know, we don't I don't think people are aware of how distressing Tinnitus can be. We think we associate with that with schizophrenia, you know, like, Oh, I'm so sorry to hear those voices. Well, this is a version of that. obnoxious, incessant noise.

Cynthia Ryan - VeDA  37:10

So, so many people have tinnitus? I don't know, Christina, if you know any of the statistics on that, but I know it's, it's not uncommon. And, and yet, there's no, I'm using air quotes here cure for it. Obviously, there's a lot of research going on. Christina, can you tell us about some of this research? And maybe why you think, you know, for something as as relatively common as tinnitus? Why haven't they come up with better treatments than, you know, noise therapy and cognitive behavioral therapy? Why can't we fix this thing?

Dr. Christina Shields, AuD, CCC-A  37:53

I think the reason why we can is because we can't find the exact source, right? The brain from the ears to our brain, it's really complex. And we just can't find that exact place in which tinnitus happens. I mean, Tinnitus can be a cause of so many different things, right hearing loss, it can be actually due to medications, vascular problems, can be a result of head or neck injury and the list goes on. But there is some hope there's actually a new tinnitus device that was just FDA approved earlier this year. It's called linear by neuro mod. And it actually uses bimodal neuro modulation. I know it's a mouthful. So it basically uses auditory signals and a somatosensory signal as well. So these patients listen to some tones, but they also have small electrical shocks to the tongue, activating another system, which is your somatosensory system. And so it's believed by pairing these two, were driving plasticity or changes in the brain. And so this company has done very large human studies, and they found that majority of their patients reported a reduction in tinnitus severity. And so this is really exciting because this is kind of the first time a device like this has been approved in the United States.

Cynthia Ryan - VeDA  39:32

Wow, that is pretty awesome. And I think it's a device that I've heard about for a long time research takes years and then you know, going from the research process to the commercialization process and getting FDA approval is a whole nother thing. When my husband went to an audiologist recently, she said, you know, to treat his tinnitus it would probably He take a year or two, and he would probably receive about maybe 30%. Improvement. What? In terms of, you know, treatment? What can people expect? You know, how long does it take for different types of treatment? And? And can people expect it to get all the way better? Or maybe just reducing the intensity or frequency of the tinnitus?

Dr. Christina Shields, AuD, CCC-A  40:27

So I never really liked to give timelines because everybody is different. Sometimes. Tinnitus habituation, right, being able to ignore the tinnitus, just like the fridge in the background takes a lot of time. And sometimes it is harder to do when that tinnitus is associated with a really stressful event. Right? So an accident diagnosis of a disease, right, Steve that impacts your quality of life. And so having this set timeline can actually hinder the patient because now they expect it to come. And then when it doesn't, it can be a really stressful event. So I like to say, You know what it takes some time, I like to educate my patient about tinnitus, and set appropriate expectations. And then I try to answer as many questions as I can to the best of my ability. And if I can't answer it, then I try to refer to somebody that can answer it.

Kimberly Warner - Unfixed Media  41:31

Yeah, yeah. Oh, it's so much man. I mean, I can I feel your pain, Steve. And I think I've even read stories where some people get to these places that where it's unbearable. I don't even know if it's true. But didn't Van Gogh Some say the Van Gogh cut his ear off because he had tinnitus? So what would you say? Is that right?

Steve Schwier - Vestibular Patient  41:53

Well, they can't really be sure. But when they went back and reread his journals and letters to his girlfriend, they're thinking that he was describing them in the years disease, tinnitus type issues. So they I mean, there's no way to know for sure, without talking, but that's a lot of people are expected to speculate that, you know, I've told people that before, but I don't tell them that it's 100% positive, but everything aims towards that to the tentative.

Kimberly Warner - Unfixed Media  42:21

Well, what would you say to someone? Who is to that point of feeling like it's so unbearable that they want to cut through here? I mean, yeah, what do you what would you say to that? People listening right now that want to know, what would you say to them?

Steve Schwier - Vestibular Patient  42:44

I think first just recognizing that your life is going to be different. You know, I think a lot of my, my earlier on years, were the years where I wanted to jab a pencil on my ear, you know, and just make it stop, you know, and as I just came to accept the fact that this my life is going to be different, then you can start handling that pressure, or that insanity, or the times where you're feeling like you're just like mentally going to lose it because this thing just will not leave you alone. So I mean, patients, it, you have to step back and be very patient with yourself, you have to let yourself be sick, you have to give yourself freedom, to not be okay. And hopefully, surround yourself with people that let you feel that way. And don't keep you expecting you to be what you were before, because you're never going to be the same at least in the case that this is as severe as mine. You know, I could maybe cut my tinnitus down, marginally with a lot of therapy and stuff, but it's still going to be, it's a game changer. So realizing that accepting it, being patient with yourself, given your chance, give yourself a chance to accept what life is like now, and then find out ways to continue to fight to be happy and fulfilled. I think that's like, when I was at my worst, you know, I was so sick, I couldn't get out of bed for two years. So the tinnitus was just like, really overwhelming. And then once I started getting back and picking up hobbies and painting and writing, and doing my trips, you know, I'm trying to just kind of do things that fit with who I am, but also can kind of take the place of some of that craziness, where you know, when you're alone with yourself all day long and feeling crappy, with his ringing in your ear, you know? Yeah, you're gonna go insane and you're gonna get really, really down on yourself and discouraged. So, my suggestion is just, you know, with whatever you can do try to fill that gap with something that does bring you some happiness or peace. You know, whether it's a hobby or a job that you enjoy or walking your dog. You know, I walk my dog Two times a day religiously because it's I can go out there. And it's just it's part of my routine that helps me feel like I can have a normal life. Yeah.

Dr. Christina Shields, AuD, CCC-A  45:10

And Steve, I really liked the way that you said that. It's taken you a long time, and you're still not even there yet. So it is this journey that each individual takes. And everybody is different. And every coping strategy is different for each person. So I think I loved the way that you said that.

Kimberly Warner - Unfixed Media  45:33

Yeah, me too.

Cynthia Ryan - VeDA  45:36

Yeah, acceptance goes a long way. And, and I love also Steve, that you've really made. Made it your passion to do something to help others, you know, that gives purpose to your life, and, and a meaning to what you're going through. Yeah, and

Steve Schwier - Vestibular Patient  46:01

I think just going through what I've been through, it's also it's easier for me to be compassionate with other people, whether they have tinnitus or any disability. You know, Ms. I have a good friend with Ms. And it's easy for us to just support each other, you know, or if I'm in public, and someone's like, oh, I have tendonitis, too, you know, I'm not, I don't just shove it off and just say, oh, yeah, it sucks. You know, I can listen to them. And I can say, tell me, does it keep you up at night? Like, let them tell their stories, because when people can tell their stories, it's very, very healing I found. And I discovered this a lot more once I started doing my bike trips and meeting new people every day and telling my story. But I actually spent more time asking them about their stories, even if they were a farmer in Kansas, and they plow the field every day, I would ask him, what's that? Like? What music do you daydream? You know, you get excited when it's, you know, like, I found that everybody has a story in their own, and everybody has a good story. I mean, even if it's a hard life, you know, their story is so important to them. So important to them. It needs to be important to us. Yeah.

Cynthia Ryan - VeDA  47:18

And sometimes when you're listening to other people's stories, you can get out of your own head and not get too caught up in your own story. Yeah, yeah.

Steve Schwier - Vestibular Patient  47:28

You're doing a good job watching the blown. Go ahead.

Kimberly Warner - Unfixed Media  47:31

I'm just saying you're doing a beautiful job with it all, Steve. I mean, it is it's tough. I can, I can see it, I can feel it. And you are. You're grabbing it with everything you've got. And it's I think you've changed lives by being willing to share the whole spectrum of what you're experiencing. And shout out to your band, your new music, not music endeavor that you've resurrected. You guys, if anyone's listening and is in Colorado, check out Steve and his band. What's it called? Mo and Steve?

Steve Schwier - Vestibular Patient  48:08

Well, we're called Building D now

Kimberly Warner - Unfixed Media  48:10

building Oh, you've changed names building D.

Steve Schwier - Vestibular Patient  48:13

Yeah. Building D, because we both live in the same condo complex. And we're in building D and my wife just like you know, what a good band name for you guys to be building. I love it. You know? It's just simple. And it doesn't box us into any genre. It could be it could mean anything. And that's what we are going for. Because we play everything from 70s pop to heavy metal to Madonna prints. You name it, Cyndi Lauper all the way to Soundgarden. I mean, we play a little bit of everything. And we just learned some Supertramp, which I love. But yeah, going Do we have an Instagram, just type in building two small dashes at the bottom D and you can follow what we do. And we were posting videos and pictures of us and what we're doing is we're getting noticed around our town, and we're starting to get noticed. So we're getting quite a few calls for so cool. Last night, we played on a on an actual stage with a sound system for the first time instead of sitting in a coffee shop corner with our little PA, you know, and it just blew my mind hearing the full sound of my bass again, and I couldn't stop smiling. It just felt like I was washed over with joy. And then it exhausted me and blew my ears up but you know, you pay up. You pay. It's like going into getting a Big Mac every once awhile. I gotta go get a Big Mac and I know my ears gonna ring for three days worse than it did before. But pay I'm willing to take that chance. I can. My guilty pleasures still. You know, I still gotta go after him every once. Yeah.

Kimberly Warner - Unfixed Media  49:48

Gotta find that joy. Steve.

Cynthia Ryan - VeDA  49:50

Well, thanks for sharing your story again, Steve. As always, it's always a pleasure. And Christina,

Steve Schwier - Vestibular Patient  49:56

thank you so much. I love you guys to death and it's I'm so great to be connected with you guys. And meeting us. You Christina has been really good.

Cynthia Ryan - VeDA  50:05

Yeah, this was tubular community is definitely a close one.

Kimberly Warner - Unfixed Media  50:09

It really does. And Christina, thank you for sharing your wisdom. This has just been really fascinating to me. I appreciate everything you shared and including the new risks research. So, Steve, if you end up trying that out, let us know.

Steve Schwier - Vestibular Patient  50:28

Yeah, Christina, have you ever actually just come up with a full question on how to fix me? I'm first in line. Or if you want to use me as a guinea pig I will fly to you wherever you are. You can prod and poke me you can give me whatever meds you want. You can put me in a trance. It knows. I don't care. You know, I'm here to if you need me to be a test subject. FDA approved or not. Go for it. I'm ready.

Cynthia Ryan - VeDA  50:55

All right. All tinnitus researchers out there. We're putting it out there. Steve's your guinea pig. guinea pig. All right. Thanks again, everyone. And if you for other podcasts, you can check us out@vestibular.org Thanks, everyone. Thanks for tuning in to ICU this month.

Kimberly Warner - Unfixed Media  51:21

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 other more seen. I see