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All About Tinnitus- Episode 35 with Dr. Kelly Dyson

Hey everybody and welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and this is the long awaited tinnitus episode. So, there’s a lot to say about tinnitus. And it’s very important to differentiate between a time when tinnitus is a signal of something serious that requires medical attention and maybe imaging studies to see if perhaps there’s really something going on with the auditory pathway with the ear. Sometimes, there can be a tumor, a very small tumor pressing on the auditory nerve. And that is what’s causing the tinnitus. That’s the most severe kind of thing that could be going on. But tinnitus can also be a totally benign and regular typical experience that lots of people have.

So, it can be scary to look up tinnitus on the internet and see the Google searches of, “OMG, Do I have a tumor?” Whereas, it’s also something that’s super, super common and totally not dangerous and, you know, not medically alarming for the most part for most cases. Regardless, across the board, of course, if you are having tinnitus, if you are having ringing, buzzing, or any kinds of sounds in your ears, right away, go see a doctor, specifically an ear, nose and throat specialist or even more specific, a neuro-otologist.

It’s important to get the right proper care and of course to visit an audiologist and get hearing tests because many, many times hearing loss and tinnitus come together. A person can be struggling with and suffering from a tinnitus, from a ringing in the ears that’s bothering them. And then they find out they also have a hearing loss which isn’t the thing that’s bothering them but actually can be related. And once they start using hearing aids or any other treatment to help with the hearing loss, it actually improves their perception of the tinnitus. So, absolutely get a hearing test.

And here are some of those red flags. If the tinnitus is:

  • only being heard in one ear and not in both ears
  • being heard in the head
  • if it is really, really loud and feels like it’s louder than the sounds around you or louder than people’s speech
  • if it is a roaring, low frequency
  • if it is pulsing,

those are all signs that you should absolutely get a medical and an audiological workup, as opposed to the kind of tinnitus that many of us experience which is a very high frequency, like “eeeee” or something like that, which is very soft and quiet and you hear it more when there’s no noise, when you’re in silence. Especially if you’ve just been exposed to a lot of sound, like if you’re coming home from a concert or something, and then you experience that tinnitus, that is something that can be expected. Of course you definitely want to protect your hearing in those situations, so go back and listen to our protect your hearing episode to find out how.

There’s just so many things to understand about tinnitus. It isn’t just one kind of thing. And that’s why you’ve got to see someone who is really trained and has a lot of expertise in this specifically. Which brings me to our fabulous interview today with Dr. Kelly Dyson, who is the tinnitus doctor on Instagram. She and I had a conversation about tinnitus and I’m so excited to play it for you now. Thank you so much for being a listener of the All About Audiology podcast. And we are also celebrating 10,000 downloads. So, thank you for being a listener. It really means the world to me that you’re here and that you are part of the All About Audiology community. Absolutely, find me on Instagram @allaboutaudiology podcast, join the Facebook group and I am now on Pinterest!!!

So, let’s jump right into that interview and welcome Dr. Kelly Dyson.

Welcome to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and today we are finally talking about tinnitus. Sooo many of you have requested and sent in questions about this very interesting topic in audiology and we are so lucky to have with us Dr. Kelly Dyson from @thetinnitusdoctor and also from her practice in Florida, SuncoastAudiology.com.

LS: “Welcome Dr. Dyson.”

Dr. D: “Thank you so much for having me.”

LS: “So, tinnitus is one of those things that most people have kind of heard of, maybe they’ve heard this tinnitus, tinnitus (pronounced in different ways) or tintinitus, that’s a different thing altogether. But they’ve definitely maybe experienced some ringing in the ears or sounds that aren’t there. So, can we start by hearing what is tinnitus?”

Dr. D: “Absolutely. Tinnitus, what most people call tinnitus, or tinitus, is a phantom sound, a sound that our body is creating that no one else can hear. In my 30 years in practice, I’ve only had one patient that had tinnitus that I could hear. That’s a very rare thing, it comes from a medical disorder where an artery is too close to the ear, that sort of thing. That’s not what everybody else is talking about. It’s a sound that our body is creating in response to something.

So, everyone is different. In other words, people will say, ‘Well, I don’t have ringing. I don’t have ringing in my ears but I hear and then they just fill in the blank’. And it can be anything from music, to sound, to singing voices. I had a lady once, a patient who was a retired nun. And she thought there was a spirit in her house because it was whispering to her. And it wasn’t until I said, ‘Well, does it whisper to you when you’re at the store or in the car? I mean, 24 hours a day.’ Then she realized, ‘Well, yeah, it’s there all the time.’ And it wasn’t talking to her. She was just hearing “pss, pss, pss” and thought that’s what it was. And then we were able to show her that it was just tinnitus and treat it.”

LS: “Yeah. And there’s all kinds of ways that people describe what they hear. And those words are probably very helpful to you when you’re treating people, if they’re saying roaring or whooshing. Or what else do they say ringing, whistling…?”

Dr. D: “Buzzing, clicking, it can be all of the above. And speaking about sometimes people hear voices. It’s not when people are crazy and hear voices that’s different. Those voices are talking to them, “Go do this.” That’s schizophrenia or a mental illness. But a lot of people hear voices that are just like they’re hearing a radio broadcast, that’s tinnitus. Their brain has just picked up on some sound, they keep spitting it back out. So, I tell people, as long as that voice isn’t talking directly to you, then you’re fine.”

LS: “That’s a good way to differentiate. So, tell us a little bit about your background and how you came into this niche within audiology, if you would like.”

Dr. D: “Sure. I got tinnitus as a child due to chronic middle ear infections. I had an acute ear infection, meaning that it just came on very sudden within a few hours, and my eardrum ruptured and I had a hole in my ear for about two years.”

LS: “How old were you when this happened?”

Dr. D: “Twelve. And so, because it happened when I was a child, I didn’t know that it wasn’t normal. It wasn’t until I got to college. I thought I was going to be a speech pathologist, and I was in an introduction to audiology course. And they started talking about tinnitus and I raised my hand and said, “Do you mean to tell me that not everyone hears the sound?” And everyone just turned and looked at me, because I thought the sound of silence was “ehhhh”. I didn’t know.”

LS: “And did you hear that in both ears?”

Dr. D: “Yes.”

LS: “Did your eardrums burst in both ears too? You had a double ear infection? My gosh.”

Dr. D: “The right one was really bad. The left one just healed spontaneously and it was fine. But the ear infections and the fluid and things like that were still there. And it was really tough because we had a pool. And I was an avid swimmer and couldn’t go underwater and back then they didn’t make the custom earplugs or anything like that, or the headbands that go over. So, I got the tinnitus. I found out about it in college and said, ‘Oh, I’m not doing speech, I’m going into audiology’ because I knew what it was.”

LS: “Yes, we snagged another one. Hahaha.”

Dr. D: “Exactly.”

LS: “It’s the Intro To Audiology class that gets us all.”

Dr. D: “Yeah, it does. It’s like oh, this is it. This is what I was meant to do. And then, about 10 years ago, I got into lymphatic hydrops. You know, it’s sort of like mini ears of inner ear fluid buildup without the dizziness, but my hearing dropped. I got that “uhhhh” sound that feels like it’s just in your head and it’s going to explode. And then that’s been in remission for about seven or eight years. But now I have a really loud obnoxious sound in my right ear, like a police siren. It’s there all the time. So, it was the two things I acquired as an adult, or I didn’t acquire it but you know, I got them as an adult. That’s what made me really go into tinnitus and say, ‘You know what, this is where it’s at for me,’ because I know what it is. I know what works and I know what doesn’t. And I know it from experience.”

LS: “Yeah, that’s incredible. Okay, so we have a couple of questions from the listeners. And one of the big ones is, ‘Should I be worried about the sound? Or is it normal? How do you differentiate from when it’s cause for concern and when it’s, you know, everybody has this kind of thing?’ “

Dr. D: “Oh, sure. That’s a great question. It matters if it bothers you. In other words, I’ve had ringing in my ears for 40 plus years. It’s no big deal. It’s just there. It’s when it starts bothering you, then it affects other parts of your body. Now, we tell people, if you just have it in one ear, like I just have this one sound in my one ear, then I would go get a hearing test at least, or see an ear doctor/physician, just to make sure it’s not something else.

Now, that being said, I always like to preface this with all ear tumors are benign. And I say that because people think, ‘I have ringing in one ear, I must be dying of a brain tumor next week.’ And that’s that how that type of thing works. We just want to get a baseline hearing test. And you can do that at an audiologist. But if it’s just one ear, it’s a good idea just to have an ear doctor look in there and say, ‘Yep, everything’s fine.’ There’s not something lodged in the ear. There’s no wax buildup that’s causing it just on the one side. Did that answer that question a little bit?”

LS: “Yeah, yeah. What we learned about this was that if it’s, like you said, in one ear, that’s more concerning than if it’s both. And also, if it’s constant in every situation all the time, as opposed to, it comes and goes and annoys you when it’s too quiet, right? That’s like a little more normal. But if you hear it loudly when you’re in loud places, then maybe you want to get some help.”

Dr. D: “Also, if it comes on suddenly, you know, it’s not here today, and I wake up tomorrow, and there’s just this loud sound on one side, definitely, if it’s loud and sudden, go right to the doctor within 48 hours. Okay, if it lasts less than five minutes, that’s different. That’s Eustachian Tube Dysfunction, which is Hay Fever related. And we see that everyday here in Florida. Everybody has Hay Fever, even if they think they don’t. So, you get a high pitched squeal. It lasts for a couple seconds to a couple minutes and then it goes away and it might even feel like the hearing goes down while it’s ringing. That’s different. That’s middle ear. Regular tinnitus doesn’t go away just on its own randomly in a couple of seconds.”

LS: “I think what most people listening want to know, ‘What can I do about it? How do I make it go away? How do I make it stop?”

Dr. D: “Exactly. Taking the no ring pills that you buy an Amazon, that’s not gonna work.”

LS: “No?!?! Hahahaha.”

Dr. D: “I have patients that do take those just in case. But the thing with those is, you can take a sugar pill, put it in a bottle, put a label on it, put it on Amazon, and once the patient opens it, it can not be returned. So, now I’m selling this $50 bottle of vitamins. And you say it doesn’t work, “Oh, sorry, you must have a different type of tinnitus.” So, that kind of stuff doesn’t really work.

What we do for it typically is sound therapy. Now, a lot of people use ear level devices where it puts out a sound. Each sound is different according to the tinnitus, whether it’s a high pitched sound, a low pitch sound, a mid-frequency sound. The sound we use on the device depends on what the person is hearing in their ear. But a lot of people will use headphones, especially, younger folks, they’ll just use their air pods or some type of an earbud and they’ll stream sounds from tinnitus apps, but it’s really important that people know that if you self treat, and cover it up, in other words, you find a sound that covers up your tinnitus, that could cause more damage. It could make the tinnitus louder or it could cause an inner ear noise induced hearing loss. But it can also, if it’s done wrong, it can weaken the membrane in your inner ear and potentially make the tinnitus worse.

I tell people if you just want to try something, get a sound machine. You can get a cheap $20 sound machine online on Amazon, or you can get one that’s a little bit higher quality. The one I use here in my office and at home is called a Sound Oasis. It’s a Bluetooth speaker, but it plays 20 different sounds. And I’ll have that sitting on my desk if I’m at work doing charts, and it’s just really quiet and my ear is ringing. So, that’s a good indicator of if you’re going to get some relief, something people could try. And if they don’t like it, of course, they can just return it to Amazon. But that way, they can see kind of what sound therapy is like without having it going in their ears. Because it’s hard to listen to sound therapy through headphones and then have a conversation. But you can do that with something sitting on the desk.

So, sound therapy is really the only thing that we know that works long term. Now that being said, the tinnitus does not go away. It’s still there. And so people say, ‘Well then why would I do it or why do I want a second sound?’ We want the tinnitus to be that people don’t notice it. In other words, it’s okay if it’s there if I don’t notice it, like I have this watch on. All right. I haven’t thought about it once since we’ve been sitting here, but it’s been there the whole time. So, it’s okay if my tinnitus is there the whole time, as long as I don’t notice it, right? Because it’s a benign thing. It’s not harmful, but it’s annoying. So, as long as we can get it to the point where it’s no longer annoying, then we’re golden. That’s our goal of treatment.”

LS: “So, the goal of the sound therapy is basically to distract that part of the brain that’s attuned and paying attention to this tinnitus sound to actually say, ‘Hey, there are these other sounds but we don’t have to pay attention to any of them. They’re just hanging out.’ Not to then focus and fixate on the sound machine sounds, right?”

Dr. D: “Yes, because when it’s external to the body, the emotional part of the brain, the limbic system doesn’t attach importance to it. It only attaches importance to the tinnitus (pronounced tinytis) or the tinnitus because it’s in here; It’s inside the brain, it’s inside the head, and we feel like we can’t get away from it. It doesn’t do that to an external sound. An example I like to give is, if you’re a law secretary working in a very busy law office, and you’re at your computer all day, and there’s a copier behind you, if you’re super busy, you’re not even going to notice that copier going 1000 times behind you all day, but it didn’t go anywhere. It’s still there. So, that’s what we do in sound therapy, we make it so it’s like that copier in the background, you can just ignore it. Because that limbic system, that emotional nervous system is focused on this benign sound that we’re putting in the ear or that we’re having via sound machine.”

LS: “Yeah, I remember the image of a candle in a dark room.”

Dr. D: “Yes.”

LS: “And if you just have that candle, then that’s the only light there is. Of course you’re going to focus on that. Then you come in and turn on the lights, turn on your chandelier, your bedside lamp, and now you’ve got like three different light sources. Then the candle is very dim, and you hardly notice it.”

Dr. D: “It doesn’t go anywhere. It’s still there. But yeah, by increasing that contrast, or really, I guess decreasing the contrast between the light and the dark. You don’t notice it. Exactly.”

LS: “Yeah. And what about people who say it’s all in your head, so you just need to stop thinking about it? The whole meditation direction, which actually, I’m a fan of, you know. I don’t mean to belittle the importance of our mindfulness, but how do you respond to that kind of approach?”

Dr. D: “I tell people, if you see a doctor who tells you, ‘Just ignore it, you have to go live with it’, then they need to see another doctor, because that’s just not true. I am a huge proponent of mindfulness. I refer to therapists who do cognitive behavioral therapy, I refer to therapists who do EMDR which is the Eye Movement Desensitization, because a lot of tinnitus patients have had trauma. In other words, I’ll say, ‘When did this start?’ ‘Oh, two years ago.’ ‘Well, did you have a huge stressor then?’ ‘Yeah, my spouse died, my parents died, I had a car wreck,’ you know, it’s always associated to something. It’s so with CBT or EMDR, we can dissociate the limbic system in the brain so that the trauma response isn’t attached to the tinnitus. I always recommend meditation. I’m huge on meditation. And then I also have a yoga that I recommend to my patients that they can do right on YouTube. It’s a yoga specifically for back and neck pain, and it works right on that tinnitus. I’ve tried it myself. And I noticed when I skip, boom, it’s much louder. So, I recommend all of those things.”

LS: “That’s a specific yoga video you are referring to?”

Dr.D: “Yeah, it’s Jen Hilman yoga for back pain and neck pain and sciatica. I think I just found it one day, because we treat tinnitus or tinnitus is responding in the same part of the brain. It’s like pain. So, I was googling yoga for chronic pain and this video came up, and I tried it. And the first half of the video someone could do sitting in a chair. So, even if you’re paralyzed, and you can barely even move because of MS or whatever it is, you can still do this, because it’s just moving your head up, down. And she just directs you. It’s wonderful and my patients that do it, love it. And as far as the meditation that you mentioned, I make a pact with a patient when they first start and I say okay, ‘Will you at least try to do one guided meditation?’ I use another channel right on YouTube. It’s this channel called The Honest Guys and I just love them because they have videos from like five minutes to three hours. So, whatever’s going on like this one for reducing anxiety and negativity, boom, that works right on that limbic system. And if people just start practicing it, and when it hits the fan, they have a stressor, the tinnitus gets louder. Their brain knows how to calm down because they’ve been teaching it how to do that. I’m right on the same page with you as far as the meditation, I love that. It all helps.”

LS: “It’s a very funny dichotomy this thing, it’s like if someone says it’s all in your head, then that’s like minimizing it. But then you can flip that whole sentence and say, ‘You really have the power within yourself with your own power of your mind and focusing on this or that.’ So, it’s not “it’s all in your head is also true. And then another way as equally as it’s very not true and the other way.”

Dr. D: “Right, our control over it is in our head, and that’s a good thing. It’s a good thing that we can teach our brain to just ignore the tinnitus.”

LS: “Okay, now I got a question. What about people who say they have tinnitus but they don’t? And is there anything that we have from the clinicians perspective that can differentiate someone who’s making the claim and someone who’s really struggling with tinnitus?”

Dr. D: “Sure. Well, I have a machine called the tinnometer. And a clinician can actually perform this function but with the tinnometer, what somebody does is they have a mouse and I put it up on another screen right on my sound booth here, and then they have to match their tinnitus, loudness and pitch. Now you can do this on your own just using your audiometer. I find that most of my patients or I would say more than 50% have tinnitus beyond 1000 hertz. So, unless you have a high frequency audiometer it’s tough to do that. You know they are costly, so not a lot of people have them but mine goes out to 16K. So, they measure it and then I can save it and quickly flip screens and, and then I move the cursor and they have to do it again.

So, if they don’t match it, you know, at least twice or three times in a row, then they’re not hearing it. I mean, you know, because they’re going to be all over the place because they won’t know, hey, I’m about to click this mouse and switch the screen. And now what they had marked as being their tinnitus, they’re not gonna be able to mark again. Now I can tell you with mine, the one that I’ve had for 40 years, it’s 2000 hertz. It never varies. So, if I match it to the tinnometer, I’m not going to be at 1500 and 3500. It’s very specific, and you can do the exact same thing with your audiometer as long as it’s not above 8000. That’s the best way to do it.”

LS: “Is this software on a computer or this is an individual device? I’ve never heard of this before.”

Dr. D: The tinnometer is a Medrex. It’s a Medrx audiometer, it plugs right into your computer, but it’s really lightweight. I mean, you could put it in your pocket book, it’s so light, and everything just plugs into it. But you could run it off of a laptop. I mean, I run mine off of a laptop. It’s through a sound booth. But you don’t have to, you could plug it right into a USB. It’s wonderful. And then if you don’t have the tinnometer function, you can just match it on the high frequency audiometer. It’s a little tougher if the patient’s not controlling the mouse. It’s so much easier. They just drag the slider and it goes, “whoo”. And they hear it just change. They can change the slow, the tempo, in case it’s pulsatile or not.”

LS: “Wow. I never heard of that one. Thank you very much. Because there are lots of times people come in with claims from car accidents or work accidents or whatever they’re trying to claim for. And it’s very hard to trick someone into thinking you have hearing loss. We have lots of ways to find that out. But if you say, ‘Well, I hear ringing.’ It’s like I guess you do. There is nothing I could do. But I guess this is a good trick to try and get it matched and then do it quickly again and they have to rematch.”

Dr. D: “I had a patient in here this week. She was a veteran of the first Gulf War. And she has tinnitus. And the VA denied the claim. Well, I ran her OAEs, which tells me about her microscopic hair cells and the damage showed up immediately. When you test your hearing traditional audiometry, she is normal. From 250 to 8000, everything looks just normal. Like there’s no problem. So, of course they’re denying her claim. Well, I ran the high frequency audiometry, she dropped down to 70 db, at 10 k hertz. There’s proof she was in battle. And I put her on the tinnometer, and boom she matched it to the exact frequency in the highs multiple times. That’s proof right there. I mean, she matched it right to where her damages are. There’s no faking that, there’s no disputing it.”

LS: “So, you are telling us this awesome story about the vet. Did you get her the claim? Did they accept your claim?”

Dr. D: “Well, we’re working on it. I just saw her this week. And I said, ‘Look, this is definitive proof. We’ve got the OAEs, we have the high frequency audiometry and the tinnometer, it all matches up.’ So, there is no doubt in my mind, she’s gotten tinnitus. The problem is the VA doesn’t routinely test high frequency. So, there’s no service record. But I mean, she completely cannot work from PTSD. That means she’s the ideal tinnitus person. She is going to a new VA, but the previous VA she went to didn’t do anything for her except throw hearing aids on her, which of course didn’t work. She doesn’t have a hearing loss and a speech range. So, I said, ‘Go get some hearing aids. Bring them here and we’ll do the sound therapy on you.’ “

LS: “I have a question for you. The question was about TRT (tinnitus retraining therapy)? Is that an official term? Tell me about that.”

Dr. D: “I trained under Dr. Jastreboff and Natan Bauman. Okay. Both of them have used types of TRT. I think Jastreboff invented it and then Bauman did his offshoot of it, but they’re both wonderful. And just from taking, I mean, my very first intro to tinnitus associate course, you can start doing sound therapy as an audiologist. Now, I don’t mean getting into sound sensitivity disorders and all that because I do that too. I see the worst of the worst. And then I see people with just regular tinnitus but TRT definitely works. Because it just retrains the brain. It does exactly what it says it’s going to do and I have used it on myself. When I first got the hydrops, I immediately put something on. And then when I got this other sound, I put some masking devices on and I wore them 24/7 unless I was in the shower, I slept in them and everything. And it gave me that relief. And it proved to me that it worked, because I didn’t know what to do at that point. But all I knew was don’t cover it up or it’ll get worse.”

LS: “Yeah, so what’s the mechanism? What actually is being played in those devices?”

Dr. D: “It depends on what their tinnitus is. In other words, whether we’re using white noise, pink noise or brown noise, but it’s usually something like that. I don’t like modulated sounds. I know, a lot or some of the hearing aid manufacturers will use something like sound waves. I’m not a big fan of that. I have used fractal tones. The white x fractal tones and the issue I’ve had with that in the past is that people get sick of hearing them. So, I have people, if I’m fitting white x, I give them what I call a rescue program. Because those fractal tones are chiming, they sound like chimes about the average resting heart rate. So, I’ll tell people if you’re going through a huge stressor, you just got rear ended or you know, whatever it is, put those fractal tones on for 20 minutes and just sit calm and it works, and then go back to the regular sound therapy. But I never give somebody like an ocean sound, because then the brain is just trying to listen to that, it’s getting confused and irritated. It’s better to just use a steady sound. And, again, match it to whatever the tinnitus is.”

LS: “So, TRT is basically a methodology for administering the sound therapy that we talked about in the beginning?”

Dr. D: “Right.”

LS: “Got it, I was under the impression that it’s a whole series of things.”

Dr. D: “Well, as part of the TRT, I do questionnaires and that way I can measure pre and post and during therapy, so it’s questionnaires. Yes. Tinnitus retraining, I mean, you know, the TRQ, THI, that kind of thing, exhaustive case history, the sound therapy, whether we’re going to use your level headphones or tabletop device, and then all these other strategies, like massage. I’ve had people use aroma therapy. This is a good one. I had a man say, ‘It’s so much better when my wife rubs lavender oil into my temples at night.’ Yeah, because he’s getting this tactile touch from someone he loves. Lavender we know definitely works on the limbic system, and he’s getting his undivided attention. I bet it works. So, those types of things, really working with children specifically, I’ll have them use a sensory kit. So, in addition to the sound therapy, if, because they don’t have the tools to deal with stress, they’ll have something soft that they can touch. They’ll have a go to Tic Tac they can put in their mouth or gum, they’ll have something that they can smell just to calm down. Because they don’t have the stress reduction tools we do.”

LS: “I mean, a lot of adults that we know don’t have those tools developed.”

Dr. D: “So, that’s all part of TRT is massaging that limbic system and getting it to relax.”

LS: “So, this is the tinnitus episode, but I have to also bring up misophonia, hyperacusis and some of these other terms, so you can give us the rundown.”

Dr. D: “Oh, sure. Hyperacusis is so much more common than we think. And a lot of times doctors will say, ‘Oh, they have recruitment and recruitment is so much more rare. Most of the time, people really have hyperacusis, they have an abnormally reduced tolerance to loudness. So, clapping, sneezing, coughing, that’s hyperacusis. We use sound therapy for that too. In fact, if someone has hearing loss and tinnitus and hyperacusis, you have to treat the hyperacusis first. So, we might fit somebody with sound devices who has a hearing loss, and the microphones in the hearing loss aren’t even turned on for six months. I mean of the hearing aids, to treat the hearing loss, you’ve got to treat the hypersensitivity to sound or sound therapy doesn’t work. So, it’s essentially the same, but it’s a much different sound.

In other words, I’m using a very specific sound and a very specific loudness to treat hyperacusis and basically the theory is we are strengthening the basilar membrane, that the microscopic cilia are rooted in by using that sound therapy and it works. I’ve treated so many hyperacusis patients, and people will come in and they’ll say, ‘I can go to a restaurant again. I can go to my granddaughter’s soccer game again, and they say, it doesn’t bother me anymore.’ Then we know. And a lot of times, we’ll just shut off the sound. In other words, once we’ve treated the hyperacusis people don’t have to have that sound in there anymore. Now, a lot of them like it. It’s sort of like a security blanket, but it’s very similar to the TRT we do for tinnitus. And then misophonia is an aversion typically to mouth sounds; swallowing, chewing, coughing, sneezing. I had a guy come in for tinnitus, and I said, ‘I’m going to ask you a weird question. Do mouth sounds bother you?’ And he said, ‘My son chews like a goat and it drives me crazy. Boom, right there, gave him the misophonia reaction questionnaire, and sure enough, he definitely has misophonia.”

LS: “So, in our house we call this the banana mouth. Because when they want to bother each other, they just go banana mouth, and they make banana chewing noises even though they have no banana in their mouth. Hahaha. And that’s just how they tease each around here.”

Dr. D: “Other people will have a diversion to pen clicking, they’ll have a cube mate that clicks their pen all day. Misophonia is more of a limbic system reaction. Because it’s usually an aversion to sound that is made by one individual; the spouse, child, the parent. ‘My sister chews and it bugs me’ but the brother doesn’t bug them, even though they’re eating the same spaghetti, for instance. Or my cube mate typing on that side bothers me but not on that side, that’s misophonia. It’s an emotional reaction to one person or one type of sound.”

LS: “And is it also rooted in the underlying relational dynamics of that relationship or not necessarily?”

Dr. D: “Oh, no, not necessarily. Not always. If we fit them with sound therapy, like, here’s an example, a patient will come in and they’ll say, ‘I can’t stand “ABC” sound,’ whatever it is, a potato chip bag crinkling for example. And we put the sound therapy on, then they stop having that negative reaction towards the person that makes that sound. In other words, that underlying animosity goes away with the sound therapy. It’s not still there. But it can definitely be triggered by a trauma. And so the trauma occurred around the time that this other sound happened. And it may be that the trauma was not even associated. In other words, they had a really severe flu and were in the hospital, a child I mean, or they had their tonsils out or whatever it was, and now all of a sudden there’s a misophonic reaction. They could tell you what it is usually.”

LS: “It’s very interesting how much trauma awareness is taking everyone, this whole ecosystem of our national consciousness, International consciousness, just like waking up to the fact that when stuff happens, it affects you.”

Dr. D: “It really does. Your brain stores everything, and then unfortunately with sound sensitivity disorders, it inaccurately will pop up a response to the wrong thing.”

LS: “It’s like a hyper vigilance.”

Dr. D: “Exactly. And that’s why the CBT works so well. I have people locally that can do CBT and then I have a gal that even does it remotely via Skype or FaceTime and sees patients that way. And patients just respond so well to it. If we just start retraining that brain to dissociate the trauma from the sound, it works. It’s very effective.”

LS: “What about the EMDR (Eye Movement Desensitization and Reprocessing)? I’ve also only ever heard of that as a trauma treatment.”

Dr. D: “Yes, EMDR definitely. Because with the EMDR, it’s getting both sides of the brain to talk to each other to reprocess the trauma. And it’s proven that it works. You know, the VA has done exhaustive studies on EMDR. They use it with veterans all the time who’ve been in battle. And it teaches the brain to just process it sort of like, you take two people who went through the same whatever it was, bank robbery together. Well, this guy over here is talking about it and laughing about it and doesn’t think anything about it. ‘I’ve been through three bank robberies, I’m working on a bank for 40 years.’ And then you have this other person who’s been through one, nothing happened and they’re completely disabled from it. That’s because their limbic system has not resolved the issue. With the first guy, his limbic system never engaged. So, with the EMDR they can resolve that issue. So, it no longer bothersome.”

LS: “That’s a really concise and perfect way of saying it. Their limbic system didn’t resolve, and the other limbic system didn’t engage. I love it. That’s a very helpful way to think about it.”

Dr. D: “Therapists, because it’s such a short treatment, they’ll have a specific number of appointments according to what it is, 12 or 18, or whatever. There’s a whole protocol that they use. I don’t do it, obviously because I’m not a therapist. A licensed certified EMDR therapist will do it and I know here in the United States, there’s a website emdria.org, it’ll tell you where there’s a therapist and I don’t know if it’s International, but I know on this website they can find a trauma therapist who does EMDR in their area.”

LS: “Okay, so now the question for the person who says, ‘I’ve done the masking noise. I’ve done the TRT. I paid thousands of dollars for this device. I meditate.’ And they just say, ‘I did this, I did this, I did everything you’re telling me and it’s still bothering me, and this tinnitus won’t go away. My life is so problematic. Fix my problems.”

Dr. D: “They have to see tinnitus specialists. In Florida, we have people who say they treat tinnitus on every corner. And I’ve seen people who have been all over the place. They’ve been to Mayo, the VA, Shands hospital, which is the big one here in Florida. It’s similar to Mayo. And then they come to me and they’re like, ‘Why does it work now?’ And it’s because you really have to get somebody who this is their life and that’s how it is with me and tinnitus. Everything I do is tinnitus. All my continuing education is tinnitus, sound therapy. And when you get to somebody who that’s what they specialize in, and they’re not just selling hearing aids, it makes a difference because you’re working on the right mechanism.

You know, if I have an elbow problem and somebody puts a wrist brace on me, it’s not going to fix my elbow problem. Right? So, you have to have somebody who’s doing this therapy correctly. Otherwise, it’s not gonna work. I’ve had people come to me that went through the VA tinnitus program. That’s an exhaustive program backed up by a lot of research in they didn’t get any help. They came to me, we did it the right way. Boom, off they go, and you know, everything’s great. I’ve had people call me from different parts of the country, so I tell them, ‘Don’t stop!’. Find someone, go to ata.org. It’s the American Tinnitus Association. It’s got everyone in North America that is a tinnitus specialist. Keep going, don’t stop! Because once you find that right person, it’s going to change because it will work on the limbic system.

Now the other big thing that people again who don’t specialize don’t know is, if someone’s on opiates, the limbic system therapy isn’t going to work. If they’re on benzos, anything like that, a regular Xanax user, heavy narcotics, then it won’t work. Because I have had people come in that were suicidal. And they didn’t want to go through the sound therapy. They went and got Xanax. And they came back and said, ‘Oh, I don’t need sound therapy, the Xanax took care of it.’ But what they don’t know is that over the long term, it’s not gonna fix it, it’s going to make it worse over time. So, if someone comes in to me, and they’re on heavy narcotics, benzos or opiates, I work with a pain management doctor and she detoxes them off of that, because the limbic system will not respond. It affects the neuro-plasticity in the brain, and the sound therapy won’t work. If they try to go off of it themselves, that’s a whole different issue. That can mess up the limbic system too. But if they refuse to detox off of them medically, I can’t help them. The sound therapy won’t work if they’re on those heavy meds.”

LS: “That’s an amazing point. And something I don’t think many people acknowledge. And when you’re sitting with a patient in front of you, as an audiologist, you really need to take a very good case history. And if you’re just seeing patients every 10 minutes, ding, ding, ding, one after the other, revolving door. That’s one kind of care that audiologists give in certain settings. And here’s what a tinnitus patient would need. It is a very different level of care.

Dr. D: “So, the pain management doctor I work with will do the detox. She can give people other things. I mean, there’s alternatives that won’t affect the limbic system that will help their system calm down. In other words, she can give them something to help them sleep if they need it. That’s not going to shut down that limbic system so the sound therapy will work. There are alternatives. People don’t just have to go cold turkey and be on the ledge. If this doesn’t work by tomorrow, I’m jumping. It doesn’t have to be that. You just have to have the right tool kit of other professionals to send people to. Talking to other audiologists, I would tell people, ‘Don’t try to do all this on your own. You have to use other medical professionals when you’re seeing somebody that’s that severe.’ Don’t hesitate to send them. It’s only going to make it better.”

LS: “You see, this is why I do the podcast. This is why. Because people will tell me, ‘There’s specialists in tinnitus?’ They’re like, ‘What is audiology?’ We’re trying to get past that question and make people aware that an audiologist is a professional that is in medical school, but is very, very highly trained in eighth nerve function, like hearing and balance. And then we’re taking them further. We’re now in season three. Yes!!! We’re all about audiology and every time we’re talking about a different topic. And you know, this is the nuggets. I’m just so honored. I’m on a celebratory streak because we just hit a year, we hit 30 episodes. It’s exciting.”

Dr. D: “Congratulations. That’s huge and wonderful.”

LS: “Thank you. And I’m excited, like you said, to work with people who have an exact specialty, even within audiology, to come and show us the way. Show us the options, major main theme of self advocacy and knowing that if you are not happy with one doctor, switch to another one. If your care didn’t work, you don’t give up. You try again.”

Dr. D: “Right. You have to keep going. Don’t give up. Don’t give up! In other words, I had somebody come to me last week because a friend of theirs committed suicide from tinnitus. It’s heartbreaking and she said, ‘I do not want my husband going down that road.’ It’s such an easy therapy. And I even have told other audiologists that I see continuing education, hearing aid things. Look, if you have a question, you have a difficult patient, ‘Call me, call me, I’ll help you answer any questions.’ We have to get the word out there to patients in the public that there is help. You don’t have to resort to cutting your ear off like Vincent van Gogh.”

LS: “Or taking those supplements and continuing to pay for nothing. There’s no evidence whatsoever pharmaceutically from any of those options. Sorry. Sorry to be the bearer of bad news.”

Dr. D: “Yeah, that stuff’s not going to work on the cellular damage in the cochlea. That’s why the stuff doesn’t work.”

LS: “Now, isn’t there the irony that some other “legitimate pharmaceuticals” actually have a tinnitus side effect? So, then you actually are getting a medically induced, chemically induced tinnitus. Do you see that sometimes?”

Dr. D: “Yes, a lot.”

LS: “What kind of drugs specifically lead to that, do you know?”

Dr. D: “Channel blockers, so cardiologists are prescribing them. I used to have a friend that was a cardiologist. And if I had someone come in and say my tinnitus is “swishing sound”, boom, they went right to a cardiologist, it didn’t have to be this guy, but they can change around the meds. That’s one of them. There are some eye drops that people use for glaucoma and it would cause sort of like a psychological change, but it can definitely cause ringing in the ears. And it might not be a huge reported side effect, but I like to let patients now in order for side effects to be put into the public, the physician has to report them. So, if the physician doesn’t go online and report, there could be a drug out there that has a 50% side effect of tinnitus, and it’s being reported as 2% because the physicians aren’t reporting it.

So, don’t just assume it’s not your medication, and don’t go off your medication. Go see your doctor and say, ‘Hey, could it be this? Can we try an alternative?’ And then they’ll switch them and see if it goes away.”

LS: “Gotcha.”

Dr. D: “The other ones are chemo. Big time with chemo, kidney issues. In other words, myecin, streptamyecin, and canamyecin, that can definitely cause it. And then I also had a patient, real severe, that had been my patient and he got cancer and went through hyperbaric and the hyperbaric treatment caused it. That was the first one I’ve ever had or the only one I’ve ever had with that, but it was very specific. He came out of bed and boom, he actually had hyperacusis in tinnitus and you know, treated it with sound therapy and it took care of it. But that was one I would not have expected. I would have thought if anything, it would have made it better. But it didn’t.”

LS: “I actually just recently heard about using hyperbaric for PTSD as a way of integrating so that’s very interesting.”

Dr. D: “I’m open to anything like that. Because we just don’t know enough about what will work vs. not work.”

LS: “Is there anything that you’d like to tell our audience, anything else you’d like to share with our listeners?”

Dr. D: “Let me think. If you have children, ask them if they have ringing. People don’t ask them enough and there’s as many as 30 to 50% of kids with normal hearing that have ringing. Then the other thing I would tell people is reduce your headphone usage as much as possible. Because especially people who live in big cities like New York, you mentioned Brooklyn, you know, they’re walking around, and they’re on the subway and they have these headphones and they’re turning them up to compensate and they’re turning them up over 100 decibels. So, I tell gamers and things like that, look, you don’t have to stop gaming. Just quit wearing the headphones. Stream it through a Bluetooth speaker. We’re so addicted to headphones and it’s causing more cellular damage. So, we’re seeing tinnitus in so many more people than we used to. When I started in audiology 30 years ago, I remember the first child I had with hearing loss because you didn’t see it that much unless they were born with it. This child had acquired it. Nowadays, it’s all the time. You do OAEs on kids and they’ve all got some kind of damage from headphones. You know, they’re wearing them in the car, they’re walking around with them. You know, we can stop that damage from happening which is the tinnitus.”

LS: “Okay. So, I’ll say that a lot of people hearing that will say, ‘That’s extreme, you know, this is how everything goes now.’ So, I’m going to cushion that a little and say if you can do half the amount of time that you’re using or limit it to an hour a day, or don’t put it on when you’re on the subway, you could do it in a quieter place where it’s less. Also different strategies for minimizing your risk, rather than being cold turkey which might be scary to people.”

Dr. D: “Well, Bose noise canceling headphones, those are great because they’re gonna reduce all that other sound? When we just have it blasting in our ear, that’s a big deal. And the other thing I tell people is, put it where it’s comfortable, and then turn it down like 25%. Then you can still wear them. If I’m in the gym and I’m working out, I put it where it’s comfortable. It’s way too loud. I know from being an audiologist is too loud. So, I turn it back. It’s not as loud as I would prefer it, but now I know it’s not damaging.”

LS: “When I’m on the bus, and I hear somebody else’s music through their headphones, and they are four seats away, I just want to go over to them and tell them, ‘Please, please don’t do this to yourself.”

Dr. D: “Yes!!! Let it out! Hahaha. But yeah, they just don’t know. So, it can make a difference if we just turn it down. So, I wear headphones, I wear headphones if I’m doing something like this, I don’t have mine on right now. But I wear them. But again, like you said, limit it. Switch to Bluetooth speakers when you can at home. They don’t have to be on the ears all the time, because we’re definitely gonna see issues from that down the road. We’re seeing it now. Like I said, with kids that are wearing headphones, I’m seeing all kinds of issues that we never saw before. So, we just have to be aware. Reducing time helps.”

LS: “Yeah, the things that we’re talking about tinnitus, hyperacusis, misophonia, lots of times, tell me if this is right, they’ll show up even before hearing loss does. They’re more sensitive changes. So, sometimes they’re like, ‘The hearing is fine. Hearing test is fine. I’m okay. I keep using my headphones,’ but really there is damage going on. They can manifest in these other ways.”

Dr. D: “Yeah, I tell people, we’re only testing you at like 10 pitches, your hearing loss can be in between those pitches. And we never know because we don’t have equipment to test it. Or they’re on the high frequencies. Like I said, I have these people come in, everything looks normal. So, we test their highs and then boom, they’re down there at 15, 16, 17 Db hearing losses, but you would never know what on a regular hearing test. They don’t have where it seems like people are mumbling because it’s way out there.”

LS: “Or also, we hear this one a lot, where they say, ‘I hear perfectly fine in everything. All my tests are great, but the second there’s noise, I’m lost. I can’t filter out. When two people are talking, it’s mumbled’ because it’s like higher order in the brain of processing, of filtering, and those things will go first and will get affected from this kind of damage. Anyway, the message is there’s help out there. Tinnitus is not as confusing and scary as the world makes it out to be. Just listen to this podcast and you’ll know everything. And if needed, go see a specialist.

Tell us where we can find you, follow you on Instagram and your website.”

Dr. D: “My Instagram is @thetinnitusdoctor. My website is suncoastaudiology.com. And I have a blog on there. I have Facebook which is Suncoast Audiology, and I try to post on all those different media. Sometimes I put things on LinkedIn but Instagram and Facebook definitely have the most up to date things. Because anything new that comes out, we’re posting it. And we will be getting into a podcast and just specifically tinnitus and sound sensitivity disorders, so that we can get the word out as well.”

Thank you Dr. Kelly, @thetinnitusdoctor. Thank you so much for coming on the show and for sharing your expertise with us. I encourage you all, anybody who’s struggling with tinnitus, don’t just let it go. Don’t just buy those sugar pill things on the internet, find ways that you can help to cope and to deal with this because it is a big thing that can be affecting lives. It’s something that you might have experienced doctors saying to you, ‘Oh, it’s nothing or oh just ignore it. Oh, just turn on a fan.’ If you’re really struggling with tinnitus, please find a provider who can help you who has ideas and tools to help you cope with it. You know even if we say tinnitus is not treatable per-se, it can be managed and I wish you a lot of success on that journey.

Come and share your experience with tinnitus over on the All About Audiology Facebook group. Or DM me on Instagram. I answer all of my DMs @allaboutaudiology podcast.

I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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