The Sound Barrier #2: The noise that isn't there

Almost 15% of adults suffer from a persistent, often intolerable sound... that is literally just in their heads. Why does the brain do this to us? We help one of our listeners get some answers. This is the second episode of our new four-part series, The Sound Barrier. Guests: Stéphane Maison, director of the tinnitus clinic at Mass Eye and Ear; Susan Shore, professor emerita at the University of Michigan, and Dan Polley, tinnitus researcher at Mass Eye and Ear For show transcripts, go to ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠vox.com/unxtranscripts ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠For more, go to ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠vox.com/unexplainable⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ And please email us! ⁠⁠⁠⁠[email protected]⁠⁠⁠⁠ We read every email. Support Unexplainable (and get ad-free episodes) by becoming a Vox Member today: ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠vox.com/members⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ Thank you! Learn more about your ad choices. Visit podcastchoices.com/adchoices

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:01Speaker 00

  Support for the show comes from TikTok. If you listen to this show, you probably enjoy discovering new things. It is built into the DNA of the show that curiosity is its own reward and that there's always a deeper dive to do. And one place to explore some of the topics we've covered here is TikTok. Whether it's how to forecast volcanic eruptions, strange phenomena that the James Webb Space Telescope picked up near the beginning of time, or a literal deep dive on the ocean's deepest reefs, TikTok has a wealth of fascinating videos just waiting to be discovered. Your next discovery is waiting on TikTok. Learn more at tiktok.com/discovermore.

• 0:49Speaker 01

  This episode is brought to you by Indeed. You're ready to level up your business, but the pressure to find the right person to make that happen is intense. Indeed sponsored jobs can help carry the load. It boosts your job post to help it reach quality talent fast. Cut through the chaos with Indeed sponsored jobs. Get a $75 sponsored job credit at indeed.com/podcast. Terms and conditions apply. Hiring now? Then this is a job for Indeed sponsored jobs.

• 1:24Speaker 02

  I noticed around just New Year's time, I just remember there was something on the right side of my ear going on. It's like

• 1:40Speaker 02

  and I thought it was just the pipes. I kept asking my fiance if he's been hearing something going on in the walls next to me, but he's reported back, nothing.

• 1:51Noam Hassenfeld?

  Kelly started hearing things almost four years ago, just a couple of 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.

• 2:13Speaker 02

  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.

• 2:20Noam Hassenfeld?

  Wow, so different sounds, right, in left ear?

• 2:23Speaker 02

  Yeah.

• 2:24Noam Hassenfeld?

  Eventually, Kelly decided she needed to get her hearing checked.

• 2:28Speaker 02

  They've done so many tests on me and I don't have anything wrong with my hearing.

• 2:34Noam Hassenfeld?

  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.

• 3:19Speaker 02

  I mean, it's, 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. Yeah, I'm sorry.

• 3:44Noam Hassenfeld?

  Kelly's tinnitus got worse in louder environments, so she had to leave her job. She stopped seeing her friends. She couldn't sleep.

• 3:52Speaker 02

  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.

• 4:07Noam Hassenfeld?

  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.

• 4:15Speaker 02

  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?

• 4:21Noam Hassenfeld?

  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.

• 4:34Noam Hassenfeld?

  I'm curious if you have any questions that you want me to ask a scientist?

• 4:38Speaker 02

  I guess I would just want to know more, you know?

• 4:44Noam Hassenfeld?

  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?

• 5:15Noam Hassenfeld?

  I'm Noam Hassenfeld, 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?

• 5:52Noam Hassenfeld?

  Okay, before you go into this, just a question. How do you pronounce this word?

• 5:59Speaker 04

  Tinnitus. So you've got two ways of saying it. Tinnitus is, I believe, the proper way of saying it. Most people say tinnitus. Doesn't matter as long as we understand what we're talking about. But I believe the proper way is tinnitus.

• 6:18Noam Hassenfeld?

  A couple of weeks ago, I met Stephane Maison at Mass Aioner, a hospital in Boston. Stephane's the director of the tinnitus clinic there, which he launched last year.

• 6:27Speaker 04

  The vast, vast, vast majority of the patients are being told, this is the thing 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.

• 6:51Noam Hassenfeld?

  It was also a way to potentially help his own hearing.

• 6:54Speaker 04

  I have tinnitus.

• 6:56Noam Hassenfeld?

  You do?

• 6:57Speaker 04

  Yeah.

• 6:58Noam Hassenfeld?

  What does it sound like?

• 6:59Speaker 04

  High pitch.

• 7:00Noam Hassenfeld?

  Since when?

• 7:03Speaker 04

  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.

• 7:14Noam Hassenfeld?

  So do you hear a pitch right now?

• 7:18Speaker 04

  Yep.

• 7:22Noam Hassenfeld?

  You've probably also had at least a brief moment of tinnitus before.

• 7:26Speaker 04

  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.

• 7:40Noam Hassenfeld?

  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.

• 7:50Speaker 04

  As you no longer receive some information in one particular area, the adjacent area is going to start to become hyperactive.

• 7:59Noam Hassenfeld?

  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.

• 8:14Noam Hassenfeld?

  It turns up the volume in your head.

• 8:18Speaker 04

  So now you start to perceive a sound that is not there.

• 8:23Noam Hassenfeld?

  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.

• 8:35Speaker 04

  The leg is gone, but you start to feel pain where it's missing. Your brain is artificially increasing the perception. So in the case of touch, if you touch you with my finger like this, you're going to feel my finger. But if I increase the perception, that's going to turn into pain.

• 8:53Noam Hassenfeld?

  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?

• 9:20Speaker 04

  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.

• 9:32Noam Hassenfeld?

  So let's talk about that hearing test, the kind that tinnitus patients like Kelly get all the time.

• 9:38Noam Hassenfeld?

  You sit in a soundproof booth, you put on headphones. The audiologist plays you a pure tone, and they say,

• 9:44Speaker 04

  Raise your hand whenever you can hear a beep.

• 9:47Noam Hassenfeld?

  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.

• 10:00Speaker 04

  But a hearing test does not tell you the whole story.

• 10:05Noam Hassenfeld?

  Our ears can do so much more than just listen to beeps.

• 10:09Speaker 04

  There's something I like to tell my patients. If everything is fine, you should be able to hear a pin drop, or you should be able to hear an explosion.

• 10:21Speaker 04

  If you think about it, that's a gigantic dynamic range.

• 10:27Noam Hassenfeld?

  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.

• 10:44Speaker 04

  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.

• 11:02Noam Hassenfeld?

  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.

• 11:18Speaker 04

  The fibers that are the most susceptible to aging and noise exposure are the fibers that could for loud sounds.

• 11:29Noam Hassenfeld?

  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.

• 12:01Speaker 04

  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.

• 12:16Noam Hassenfeld?

  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.

• 12:27Speaker 04

  Instead of testing them in quiet, it's as if someone was speaking super fast with a little bit of reverberation.

• 12:35Noam Hassenfeld?

  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.

• 12:57Noam Hassenfeld?

  He placed tiny electrodes inside their ear canals and he played them a sound.

• 13:02Speaker 04

  A click.

• 13:04Noam Hassenfeld?

  He recorded the electrical responses from that sound.

• 13:07Speaker 04

  And that's going to show you different types of waveforms.

• 13:10Noam Hassenfeld?

  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.

• 13:36Speaker 04

  So now you're looking at the brainstem response. And interestingly, the participant with tinnitus had response as big as those who never had tinnitus.

• 13:51Noam Hassenfeld?

  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.

• 14:01Speaker 04

  Somehow, the brain is able to catch up.

• 14:06Noam Hassenfeld?

  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.

• 14:19Speaker 04

  Tinnitus is not a sound in your ears. Tinnitus is generated at the central nervous system.

• 14:29Noam Hassenfeld?

  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. Like, 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.

• 15:01Noam Hassenfeld?

  Do you have any idea what you think might have caused this? I know a friend of mine has tinnitus because he played in a metal band.

• 15:12Noam Hassenfeld?

  You know, like-

• 15:12Speaker 02

  That's how I wish I would have lost it.

• 15:14Noam Hassenfeld?

  I know, it would have been, it's a cooler way to have tinnitus.

• 15:16Speaker 02

  Yeah, it is.

• 15:18Noam Hassenfeld?

  I mean, do you have any ideas?

• 15:21Speaker 02

  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. That was the only timeframe I could really sync up.

• 15:38Noam Hassenfeld?

  I've heard this theory from a lot of people, so I asked Stefan.

• 15:42Speaker 04

  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 a relationship between COVID vaccine and tinnitus. I have no evidence for that.

• 15:57Noam Hassenfeld?

  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.

• 16:16Noam Hassenfeld?

  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.

• 16:38Noam Hassenfeld?

  That's in a minute.

• 16:43Speaker 00

  Support for the show comes from Shopify. Starting a business requires you to be resourceful. And the more you flex that muscle, the more you start to see opportunities for growth. For example, launching your business with Black Friday approaching means you can take advantage of the extra online traffic. And Shopify is there to help you make it all happen. Shopify says they are the platform for a record-breaking, reliable holiday selling season for businesses at every stage. They have pre-built website themes and an AI site builder, which should make it easy to launch a beautiful, professional-looking store. And you don't ever need to touch a line of code to do it. They also have a mobile app that lets you run your store from anywhere.

• 17:28Speaker 00

  And they say their AI e-commerce expert sidekick can help you manage almost any business task with a single prompt, including holiday discounts. With Shopify, you can easily sell everywhere people shop: online, in person, across social media, even in AI chats. If you are ready to launch your business before Black Friday, go to Shopify.com/unexplainable to start your free trial. That is Shopify.com/unexplainable. Go to Shopify.com/unexplainable today to hear your first.

• 18:07Speaker 00

  Support for the show comes from Quince. Fall is my absolute favorite season. I love fall colors. I love fall leather. I love the specific light you sometimes get on a fall afternoon. And I really love fall clothes, which Quince has. This fall, Quince is offering pieces with premium materials like 100% Mongolian cashmere, organic cotton, and merino wool. The styles are timeless, versatile, and designed to become the dependable pieces you reach for day after day. Their 100% Mongolian cashmere sweaters start at just $60, giving you the softness and quality you'd expect from a luxury brand without the luxury price tag. I

• 18:50Speaker 00

  I think my favorite thing about Quince clothes is that they're just good wardrobe staples. I got three black shirts from them, each in a slightly different style, and they are just correct. They fit the way they are supposed to. They look nice. They feel nice, and they go well with the rest of my closet. Find your next fall favorites at Quince. Download the Quince app for app-exclusive offers or go to quince.com. Get free shipping on your order and 365-day returns, now available in Canada and the UK, too. And when Quince asks you where you heard about them, please let them know it was unexplainable. It's a great way to support the show.

• 19:32Speaker 01

  This episode is brought to you by Indeed. You're ready to level up your business, but the pressure to find the right person to make that happen is intense. Indeed-sponsored jobs can help carry the load. It boosts your job post to help it reach quality talent fast. Cut through the chaos with Indeed-sponsored jobs. Get a $75 sponsored job credit at indeed.com/podcast. Terms and conditions apply. Hiring now? Then this is a job for Indeed-sponsored jobs.

• 20:06Speaker 05

  Had I not told you that what you mistake for madness is but overacuteness of the senses.

• 20:14Noam Hassenfeld?

  Once she got diagnosed with tinnitus, Kelly started doing all kinds of research online. She was trying to find anything that could help her feel better.

• 20:22Speaker 02

  I found this YouTuber who makes these like white noises, or he calls them pink noise, brown noises. There's so many different ones.

• 20:29Speaker 06

  This is the 15 kilohertz tinnitus audio noise masker, right around 15,000 hertz.

• 20:36Speaker 02

  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.

• 20:43Speaker 06

  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.

• 20:54Speaker 02

  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.

• 21:09Speaker 02

  And he even put that on the TV for us so that I could play it on the soundbar and I could go to sleep to it. So I've been sleeping a little more because of that, too, you know?

• 21:22Noam Hassenfeld?

  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 earmuffs over them, too, which isn't great when you're in your twenties 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.

• 21:50Speaker 04

  It's just a Band-Aid. I don't think it's very useful.

• 21:55Noam Hassenfeld?

  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.

• 22:16Speaker 04

  We're talking about this right now, so I can hear it much louder, thanks to you. Sorry.

• 22:25Speaker 04

  But I know it's because I'm paying attention to it.

• 22:29Noam Hassenfeld?

  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 they 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.

• 23:02Speaker 04

  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.

• 23:13Speaker 04

  You could reduce that hyperexcitability in the brain.

• 23:18Noam Hassenfeld?

  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.

• 23:26Speaker 04

  Well, who knows? Well, that depends on FDA. So right now, we have to go step by step.

• 23:34Noam Hassenfeld?

  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.

• 23:48Noam Hassenfeld?

  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.

• 24:01Speaker 07

  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.

• 24:15Noam Hassenfeld?

  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.

• 24:43Speaker 07

  It's a burst of sound.

• 24:45Noam Hassenfeld?

  Just like a beep, like that?

• 24:48Speaker 07

  It's more like.

• 24:51Noam Hassenfeld?

  They'd ask them things like.

• 24:52Speaker 07

  Is your tinnitus noisy? Is it more pitchy? Is it more tonal?

• 24:56Noam Hassenfeld?

  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.

• 25:25Speaker 07

  In our first trial, we did four weeks and we found that we got a clinically significant decrease in people's tinnitus.

• 25:33Noam Hassenfeld?

  So they did a second trial for six weeks.

• 25:35Speaker 07

  We saw a progressive decrease in their tinnitus. And then when we stopped doing the stimulation, that continued to decrease for another six weeks.

• 25:46Noam Hassenfeld?

  Wow.

• 25:46Speaker 07

  So that's really indicating a long-term plasticity that this decrease continued even after we'd stopped the treatment.

• 25:52Noam Hassenfeld?

  And do you have longer data than that?

• 25:55Speaker 07

  We don't. That has to be data collected in the field.

• 26:00Noam Hassenfeld?

  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'd 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,

• 26:43Noam Hassenfeld?

  but I wasn't really sure what I was going to be able to tell her until I talked to Dan Polly.

• 26:49Speaker 06

  I have tinnitus and whenever I want to, I can hear that beautiful symphony of that pure tone.

• 26:55Noam Hassenfeld?

  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.

• 27:12Speaker 06

  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.

• 27:24Noam Hassenfeld?

  Dan told me there's a pretty fundamental difference between the mild tinnitus he has and the severe tinnitus that people like Kelly have.

• 27:32Speaker 06

  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.

• 28:00Noam Hassenfeld?

  You're saying when some people are obsessed and can't function because their 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?

• 28:13Speaker 06

  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.

• 28:33Noam Hassenfeld?

  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.

• 28:44Speaker 06

  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, who like, 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.

• 29:11Noam Hassenfeld?

  What would you say to a person who has tinnitus sort of fundamentally reshaping their life in that way?

• 29:19Speaker 06

  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 tenderness and there's such a small community of researchers working on it. I never understood it, which is why now I work on this.

• 29:44Noam Hassenfeld?

  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?

• 30:00Speaker 06

  Yeah. Also, it isn't really like a disorder that falls neatly into medical specialties. So it's not just 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.

• 30:15Noam Hassenfeld?

  So if we don't have a solution that works, what are people supposed to do?

• 30:19Speaker 06

  I think if 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. And sometimes like by seeking community with other people at the problem, they 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 you're hearing sounds that aren't being produced. It is like, I understand this is kind of like hand waving and stuff, but in the absence

• 31:00Speaker 06

  of like really good therapies, you've got to use what's available to you.

• 31:07Noam Hassenfeld?

  Yeah, so it's been almost a year since we talked. How are you doing?

• 31:13Speaker 02

  I've been doing a lot better, I would say, honestly, like, 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 like 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've 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.

• 31:46Noam Hassenfeld?

  And you feel like you're slowly chiseling through it?

• 31:49Speaker 02

  Chiseling, yeah. Still making my way out.

• 31:55Noam Hassenfeld?

  I told Kelly what Dan had said about people with severe tinnitus, how 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.

• 32:13Speaker 02

  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?

• 32:34Noam Hassenfeld?

  It's gonna 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.

• 32:45Speaker 02

  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. And I'm even trying to like vacuum without any type of like hearing protection and just recognizing that sound too. It just, yeah.

• 33:09Noam Hassenfeld?

  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.

• 33:22Speaker 02

  I mean, we saw a firework 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, to know the world again.

• 33:58Noam Hassenfeld?

  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.

• 34:07Speaker 05

  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.

• 34:15Noam Hassenfeld?

  That's next time.

• 34:18Noam Hassenfeld?

  If you have tinnitus and you need support, check out the American Tinnitus Association. Their website is ATA.org and their number is 800-634-8978. This episode was reported and produced by me, Noam Hassenfeld. I also did the music. It was edited by Joanna Salataroff with help from Jorge Just. Mixing and sound design from Christian Ayala with a ringing endorsement from Sally Helm. Meredith Hadnot runs the show. Julia Longoria is our editorial director. And Byrd 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.

• 35:07Noam Hassenfeld?

  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. We're at [email protected]. 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/members to sign up. Unexplainable is part of the Vox Media Podcast Network and we'll be back with episode three of The Sound Barrier next week.

• 35:47Speaker 05

  Now at Kroger, your points add up to more ways to save every trip. Use them your way to take dollars off groceries at checkout or save at the pump. You can even save up to $35 on your next fill-up. Same points, more choices. And with low prices on fresh, quality food, plus digital and personalized offers tailored to how you shop, your dollar goes further. Redeem your points online or in the app. Kroger: Fresh for Everyone. Restrictions apply. See cider store for details.