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And I thought it was just the pipes. I was asking my fiance if he's been hearing something going on in the walls next to me, but he's reported back nothing. Kelly started hearing things almost four years ago, just a couple months after her 25th birthday. At first, she wasn't sure what was going on. She did the WebMD thing, she googled all her symptoms, she got worried. When she told her family, they told her to relax. But the sound didn't stop. And pretty soon, she started hearing something in her other ear. It's like the high-pitched ringing you usually hear in your ear every now and then, but it's like more intense and it's just there the whole time. Wow, so different sounds right and left ear. Yeah. Eventually, Kelly decided she needed to get her hearing checked. They've done so many tests on me and I don't have anything wrong with my hearing. Almost 15% of all adults have had tinnitus. And 100 million of them have severe tinnitus, like Kelly. They hear persistent noises, ringing, buzzing, sirens, even construction or drilling sounds, which seriously impact their life. But when a lot of them get their hearing checked, the test comes back fine. It's one of the things that makes tinnitus so maddening. Why would so many people keep hearing noises like these if the test says there's nothing wrong with them? And it's not like most of the people Kelly was talking to were any more help. They didn't take her seriously because they had no idea what living with tinnitus actually feels like. I mean, it's like you're just trapped in a room with a crying kid. You can't stop crying or anything. You don't know how to just make it stop. It's like there's nothing else to do, like no way to escape it. Kelly's tinnitus got worse in louder environments, so she had to leave her job. She stopped seeing her friends. She couldn't sleep. I would isolate myself and everything. I've grown so distant from my friends because with the lack of sleep, you're just not in any other mood for anybody and you can't show up like you used to for any of the things that you've done. Kelly and I first got in touch because she listened to our episode on hearing, the one just above this in the feed, and she wrote in. When I was listening to that episode, that's all it was making me think about, and that's why I was like, should I reach out? I hadn't been planning to look into tinnitus, but the more I talked to Kelly, the more I realized just how mysterious it is, even to the people who have it. So I wanted to try and get her some answers. I'm curious if you have any questions that you want me to ask a scientist. I guess I would just want to know more, you know. The thing that makes tinnitus so hard to pin down is that it isn't a sound out there in the world. It is literally just in your head, but it's also real, especially for people like Kelly. In the last episode, we talked about how our brain constructs the world we hear, how it has this superpower where it can edit out unwanted noise and fill in gaps and create a world of sound that we're actually able to understand. Tinnitus is that superpower gone wrong. I'm Noam Hasenfeld, and this is the second episode of The Sound Barrier, a series from unexplainable about the limits of hearing and the ways we can break through. On today's episode, how can our brain make us hear sounds that don't exist? And what can we do about it? Tinnitus Okay, before you go into this, just a question. How do you pronounce this word? Tinnitus. So, you've got two ways of saying it. Tinnitus is, I believe, the proper way of saying it. Most people say tinnitus. It doesn't matter as long as we understand what we're talking about, but I believe the proper way is tinnitus. A couple weeks ago, I met Stéphane Maison at Mass Ionir, a hospital in Boston. Stéphane's the director of the tinnitus clinic there, which he launched last year. The vast, vast, vast majority of the patients are being told, this is something I can do for you, goodbye. I've seen some patients who are like borderline suicidal. And so, I was interested in being able to provide some beginning of an answer to those patients and to provide support to those patients. And that's why we opened the tinnitus clinic. It was also a way to potentially help his own hearing. I have tinnitus. You do? Yeah. What does it sound like? High pitch. Since when? I have tinnitus for the past like 12 years, something like that. I haven't been in a club in many, many years or even decades, but I can tell you that I abuse my ears. So, do you hear a pitch right now? Yep. You've probably also had at least a brief moment of tinnitus before. Some people will go to a concert, they feel that as they leave the concert, the hearing is not quite the same. You feel that your hearing is a little bit muffled. You can even experience that ringing in your ears. Basically, your hearing gets damaged, which means one part of your brain is getting less auditory information than it expects. So, another part starts to overcompensate. As you no longer receive some information in one particular area, the adjacent area is going to start to become hyperactive. It's kind of like a climate control system. You have it set to 70 degrees or something, and if it gets too cold, the heat will kick on. So, when the brain suddenly isn't getting the same level of sound it's expecting from the outside world, it turns up the volume in your head. So, now you start to perceive a sound that is not there. Usually, this kind of post-concert ringing sound goes away, but chronic tinnitus is when that ringing doesn't stop. Stefan told me it's sort of like phantom limb pain in people who've lost a leg. The leg is gone, but it starts to feel pain where it's missing. Your brain is artificially increasing the perception. So, in the case of touch, if you touch my finger like this, you're going to feel my finger. If I increase the perception, that's going to turn into pain. Sometimes people with tinnitus can pinpoint what caused it. I spoke to one researcher who told me his tinnitus was caused by sitting too close to a bagpipe band at his friend's wedding. But often tinnitus seems like it comes out of nowhere. Like with Kelly, people just wake up one day and hear this phantom ringing. And just like Kelly did, a lot of them go get a hearing test. And it often tells them their hearing is fine. So, what's going on? If tinnitus is the result of the hyperactivity of the brain because something is missing, then people with normal hearing tests should not have tinnitus. So, let's talk about that hearing test. It's the kind that tinnitus patients like Kelly get all the time. You sit in a soundproof booth, you put on headphones, the audiologist plays you a pure tone, and they say, raise your hand whenever you can hear a beep. The audiologist keeps playing the same sound softer and softer until you stop raising your hand. And then they do the same thing for a whole bunch of different pitches. This is the gold standard for hearing tests. But a hearing test does not tell you the whole story. Our ears can do so much more than just listen to beeps. There's something I like to tell my patient. If everything is fine, you should be able to hear a pin drop. Or you should be able to hear an explosion. If you think about it, that's a gigantic dynamic wrench. Our ears can do this because they have different types of auditory nerve fibers, these wires that carry sound signals from the inner ear to the brain. Some of them pick up soft sounds, and other ones pick up loud sounds. But the hearing evaluation only tests for soft sounds. And if the fibers that respond to loud sounds are missing, this is not going to affect whatsoever your hearing test. So the gold standard of hearing evaluation around the world to this day is completely insensitive to the loss of those fibers. This is how someone like Kelly can have hearing problems while still having a perfectly normal hearing test. It's called hidden hearing loss. And it was only discovered a few years ago when researchers at Mass Eye and Ear realized just how easy it was to damage those louder nerve fibers. The fibers that are the most susceptible to aging and noise exposure are the fibers that could fall loud sounds. The idea is that if you have tinnitus, at some point in the past, you probably damaged your hearing. Specifically, you damaged those louder fibers. But your symptoms might have gone away. And because normal hearing tests don't focus on loud fibers, that damage stayed hidden. And if your loud fibers get damaged, you're not going to have any issues having a conversation in a quiet room. You're not going to have any issues on your hearing test. But if you go somewhere like a bar or a restaurant, you might find that you suddenly can't make out what your friend is saying. And if you look at most people, that's something very, very common. They feel like they don't have any issues in a quiet environment, but as soon as they go to a bar or a restaurant, they start to struggle. So Stefan took his patients with normal hearing test scores. And instead of giving them that classic hearing test again, he gave them a different one focused on loud fibers. Instead of testing them in quiet, it's as if someone was speaking super fast with a little bit of reverberation. Like he suspected, a lot of them really struggled with the louder echoey conversations because they had hidden hearing loss. They had damage to their loud fibers. And Stefan had a feeling that hidden hearing loss could be the thing causing his patients that had normal hearing test scores to have tinnitus. So we ran a different test. He placed tiny electrodes inside their ear canals, and he played them a sound. A click. He recorded the electrical responses from that sound. And that's going to show you different types of waveforms. It's basically a squiggly line that shows neurons firing as a sound signal gets processed by the brain. And when he looked at the early peaks, which show the auditory nerve in the inner ear, he saw way less firing than normal. The patients were getting less sound input because they had hidden hearing loss. But then he looked at the later peaks on the squiggle, the ones that showed what happened as the sound signal winds its way into the brain. So now you're looking at the brainstem response. And interestingly, the participants with tinnitus had response as big as those who never had tinnitus. For tinnitus patients, the peak at the brainstem was larger than at the nerve. Something was making up for the hidden hearing loss and turning the volume up. Somehow, the brain is able to catch up. Stefan was basically seeing the seeds of tinnitus on this squiggle graph. This thing that didn't show up in normal hearing tests. This thing that so many patients had been told wasn't real. He saw it happening. Tinnitus is not a sound in your ears. Tinnitus is generated at the central nervous system. The idea that hidden hearing loss is directly related to tinnitus, it's a big step forward. But there's still so much we don't know. We know the basics that tinnitus usually starts with hearing loss, which can be caused by things like listening to loud music or a virus or aging. But not everyone with hearing loss hears this constant ringing. Scientists still don't really understand what takes someone from hearing damage to tinnitus. Why this happens for some people and not others. Do you have any idea what you think might have caused this? I know the friend of mine has tinnitus because he played in a metal band. That's how I wish I would have lost it. I know, it's a cooler way to have tinnitus. Do you have any ideas? No, I mean, the only link that had seemed to make sense was like my friend had sent me the article about the COVID vaccinations and how a lot of people were developing tinnitus. I was the only timeframe I could really sync up. I've heard this theory from a lot of people. So I asked Stefan. I've seen a bunch of patients that said I had the COVID vaccine and then my tinnitus showed up. I have zero evidence of the relationship between COVID vaccine and tinnitus. I have no evidence for that. The issue is that we didn't test people before they got the COVID vaccine. So there's no baseline. But at a time when so many people were getting COVID vaccines, it felt pretty easy to be like, okay, I just got a vaccine and now I have tinnitus. It must be connected. But it doesn't seem like it is. So yeah, we know hearing damage can lead to tinnitus, but we don't know what actually flips that switch, why some people hear that noise and other people don't. And more importantly, we don't really know what to do about it, how to fix it, or even how to make it better. But we might be on the verge of a big step forward. That's in a minute. Support for Unexplainable comes from Shopify. Every worthwhile journey starts with a handful of granola and a brain full of dreams. Dreams like, what if I discover a new species or a new genus? Dreams like, what if I paint a masterpiece that whispers some eternal truth to everyone who sees it? Dreams of winning the big race car trophy with your big, vast race car. Or dreams of building your own thriving business. That last one is a dream Shopify can help you with. Shopify is the commerce platform behind millions of businesses around the world, and according to their data, at least 10% of all e-commerce in the United States. Start with your own design studio and choose from hundreds of ready-to-use templates to make your online store. You can use their AI tools to help you with copywriting and glamming up your product photos, and then use the platform to build a marketing campaign. You can turn those what ifs into a thriving business with Shopify today. Sign up for your $1 per month trial today at Shopify.com. Go to Shopify.com. That is Shopify.com. Slash unexplainable. This is the 15 kilohertz Tinnitus Audio Noise Masker, right around 15,000 hertz. And I see so many people in the comments talking about how this has helped them, like, go to sleep at least for like a few hours. Ringing sometimes can be interrupted by introducing a new and different sound close to the frequency of the ringing. It may work, it may not, and it'll probably only work to a certain degree. My fiance had found a way to extract one of the audios, and he combined that with just rain sounds. And he made it so that the rain sounds would only play on the right side and the left side for just the white noise. And he even put that on the TV for us so that I could play it on the sound bar, and I could go to sleep to it. So I've been sleeping a little more because of that too, you know. This kind of thing is called a masker because it masks the sound of Tinnitus. And Kelly eventually went to her audiologist to get hearing aids that played these sounds for her all the time. But because the hearing aids also amplify sounds, she had to wear ear muffs over them too, which isn't great when you're in your 20s and just trying to go outside. So all in all, it's been helpful, but it's far from perfect. And Stefan isn't really a huge fan of stuff like this to begin with. It's just a band aid. I don't think it's very useful. Stefan says that even though a masker is designed to blend the Tinnitus noise in with the background, it ends up becoming the majority of what people are actually hearing. In his experience, masking noise just ends up reminding patients all the time that they still have Tinnitus. And the more you think about Tinnitus, the worse it can get. We're talking about this right now so I can hear it much louder thanks to you. But I know it's because I'm paying attention to it. For some people with mild Tinnitus, a band aid like this can be useful from time to time. But for people like Kelly with severe Tinnitus, it's a lot more complicated. So Stefan is hoping for a more permanent solution. He told me about this experiment where researchers injected these proteins called neurotrophins into the ears of mice. And he saw that the connections between the auditory nerve fibers started to regrow. Kind of like how you might restore connections in a power line. Which makes Stefan wonder if the same thing might be possible in humans. What if you could bring back those fibers? What if you could bring back that signal to the central nervous system? Perhaps, it's a big perhaps. You could reduce that hyperacetability in the brain. Stefan's hoping to get a human trial off the ground sometime soon. But like with a lot of scientific research right now, things are kind of up in the air. Well, who knows? Well, that depends on FDA. So right now we have to go step by step. This idea would be like fixing the hardware of our hearing system. But if that isn't possible, what about fixing the software? Retraining the brain. So it just stops generating that tinnitus sound. One of the researchers at the forefront of this idea is Susan Shore. She's a professor emerita at Michigan. And she's been trying to figure out how to retrain the brain by combining hearing with our sense of touch. People who have tinnitus can sometimes modulate their tinnitus by clenching their jaw, raising their eyebrows and this kind of thing. Even shrugging your shoulders can change the pitch or the volume of the tinnitus. The way our brains are wired, there's a lot of crossover between our auditory system and our touch system. Certain neurons actually get input from both sound and touch. And Susan thought she might be able to use this as a way to retrain the hyperactive neurons, causing that tinnitus sound. So Susan and her team, they tested the idea out on guinea pigs. The results were promising. So they recruited people with tinnitus. They had them wear headphones, they'd play them a sound. It's a burst of sound. Just like a beep, like that. It's more like psh, psh, psh. They'd ask them things like, is your tinnitus noisy? Is it more pitchy? Is it more tonal? Until they were like, yeah, that's my exact tinnitus sound. Then they attached electrodes to the back of people's necks. They played them their particular tinnitus sound, while also giving them an electric pulse. They gave both of them in a precise order and time interval. They repeated it for 30 minutes a day. And they found that they could retrain the hyperactive neurons that were leading to the tinnitus. That they could basically get these neurons to calm down. In our first trial, we did four weeks. And we found that we got a clinically significant decrease in people's tinnitus. So they did a second trial for six weeks. We saw a progressive decrease in their tinnitus. And then when we stopped doing the stimulation, that continued to decrease for another six weeks. So that's really indicating the long-term plasticity that this decrease continued even after we'd stopped the treatment. And do you have longer data than that? We don't. That has to be data collected in the field. This isn't a cure. It didn't necessarily eliminate the sound. But it did make it less intense for over half the participants. Susan and her team also acknowledged that the placebo effect could have been behind some of the improvement. But they don't think it was the main driver. And the results do seem promising. Still, there are a lot of major hurdles to come here. Susan's company Oracle still needs to get FDA approval. They may need to do more trials. And it'll probably be years before anyone is using this kind of tech outside of a research setting. So I've gotten two interesting ideas. Neither of them seemed perfect or ready. And I wanted to be able to go back to Kelly with some useful information. But I wasn't really sure what I was going to be able to tell her until I talked to Dan Polly. I have tinnitus. And whenever I want to, I can hear that beautiful symphony of that pure tone. Dan's a tinnitus researcher who also has tinnitus like Stefan and apparently a whole bunch of tinnitus researchers, as I found out. Dan also works at Mass Eye and Ear. And he focuses on how different parts of the brain work together to generate the tinnitus sound. Because the brain doesn't have direct contact with the physical world, everything that we perceive as consciousness is constructed from the activity of the brain. Dan told me there's a pretty fundamental difference between the mild tinnitus he has and the severe tinnitus that people like Kelly have. People with really severe tinnitus have like a whole brain problem. Their tinnitus has expanded and it's incorporated like other brain networks. And whatever hyperactivity in my auditory pathway that's causing me to perceive a sound that isn't there, it hasn't changed the ability of my executive control to concentrate or it hasn't reprogrammed my limbic system to find all sounds horribly aversive and make me depressed. You're saying when some people are obsessed and can't function because they're tinnitus, it's not because they just hate the sound. It's because that sound has gotten into their brain system and like infected their brain? Yeah, it isn't actually that their tinnitus is louder. That hyperactivity spilled over and recruited other brain systems that have nothing to do with hearing per se, but with your ability to concentrate, to sleep, to like regulate mood and emotion. They have a more widespread network of dysregulation in their brain than I do. For people with severe tinnitus, Dan says things like mindfulness therapy or cognitive behavioral therapy can act on these other brain areas and hopefully tamp down the tinnitus. They can take you from like, I have tinnitus disorder. I'm not sleeping. I'm depressed. I'm socially withdrawn. And they can turn you into somebody like me. It's like a little bit annoying. But if you can take the one in 10 who's severely debilitated by their tinnitus and turn them into like the other nine, I'd still take that as something useful. What would you say to a person who has tinnitus sort of fundamentally reshaping their life in that way? Well, the first thing I would say is that they deserve better. You know, that this is a problem affecting 15% of the population and you can count the number of research groups working on it like with two hands. It's bizarre, right? That for a problem this prevalent that there is so little federal funding for tinnitus and there's such a small community of researchers working on it. I never understood it, which is why now I work on this. Do you have any sense why that would be? Does it have to do with the fact that this was thought of as psychosomatic for a long time or that we had this issue where people were scoring perfect on hearing tests that it felt like it was not real? Yeah. Also, it isn't really like a disorder that falls neatly into medical specialties. So it's not just an audiology problem. It's not just a psychiatry problem. It's not just a neurology problem. It's like a little bit of all and things like that fall between the cracks. So if we don't have a solution that works, what are people supposed to do? I think they can find agency if they can understand that like the problem isn't beyond their control that they can acquire some tools to cope and give them a degree of improvement. Sometimes that is self-perpetuating. Sometimes by seeking community with other people at the problem, it can help them realize that they aren't so isolated and alone. Their friends don't understand why they don't want to go out to a restaurant because it's hard to imagine what it's like to be assaulted by a world that's like twice as loud as it should be and that your hearing sounds that aren't being produced. I understand this is kind of like hand-waving and stuff, but in the absence of really good therapies, you've got to use what's available to you. Yeah. So it's been almost a year since we talked. How are you doing? I've been doing a lot better, I would say, honestly. I've been happy, I guess. I've just been trying to be more open about it because I realized that I never shared it to anyone at my job. Now I'm just trying to just put myself out there again. It just closes you in this insane box, you know? That's what it seems like at least from all the other people I met with the Tinnitus and how they've adapted to it all these years. You have nowhere to go and you just somehow find a way to chisel through it. And you feel like you're slowly chiseling through it? Chiseling, yeah. Still making my way out. I told Kelly what Dan had said about people with severe Tinnitus. It's not like they're just being weak, that they might have a whole brain problem. That their Tinnitus has basically expanded across their brain networks and hooked into the parts of their brain that influence other things, like their emotions. That's... I feel like that just feels like a better explanation because I've always had a hard time describing it, but it kind of makes me feel a little at ease again where I'm like, okay, maybe it's still not entirely like me, me, like, you know. It's going to be a long process, but Kelly told me she's been trying to slowly phase out her maskers and her hearing aids, and she's trying to learn how to listen to the world again. I'm actually just spending days in my apartment only, just without my hearing aids and just trying to take in all the sounds. Like, I'll have the windows open because the maintenance guys are working or the gardeners. I'm even trying to vacuum without any type of hearing protection and just recognizing that sound too. She still hears that Tinnitus sound all the time, but as hard as it is, she's trying to stop blocking everything out. She's just trying to hear all the other sounds along with it. I mean, we saw a fireworks show for the first time in years, and it was scary each time one went off, but eventually my body would stop jolting when they would because I was like, this is what we used to do. Like, it's literally just... it's really weird to know the world again. This was the second episode of our series, The Sound Barrier. On the next episode, the quest to figure out what silence actually sounds like. The moment before the applause, you're just kind of like hit by this experience, and I definitely felt silence like hit me across the face. That's next time. While God Not Runs the Show, Julia Longoria is our editorial director, and Bird Pinkerton took out the octopus key and blew into the end. A low sound came out and shook the ground. She looked toward the ocean, and suddenly she saw them, an army of octopuses tumbling onto the beach. Thanks to Vartika Sharma and Paige Vickers for the beautiful artwork for The Sound Barrier series, and thanks as always to Brian Resnick for co-creating the show along with me and Bird. And if any of you out there have thoughts about the show, send us an email or an unexplainable at vox.com. You can also leave us a review or a rating wherever you listen, which really helps us out. And if you're into supporting the show and all of Vox in general, you can join our membership program. You can go to vox.com. Unexplainable is part of the Vox Media Podcast Network, and we'll be back with episode 3 of The Sound Barrier next week.
