Hazel - Uniting Tinnitus and Misophonia Advocacy Efforts

S4 E18 - 6/30/2021
Adeel discusses with Hazel, the director of both Tinnitus Hub and Tinnitus Talk, her experiences living with both tinnitus and misophonia. Hazel shares her journey from the Netherlands to Finland, her career in sustainability research, and her extensive volunteering with Tinnitus Hub, a global online community supporting those with tinnitus. The conversation delves into the complexities of tinnitus, including its potential causes, such as hearing loss, and treatments, like Cognitive Behavioral Therapy (CBT), which focuses on managing the emotional reactions to the condition. Hazel emphasizes the importance of a supportive community and active research involvement in understanding and coping with tinnitus. She also highlights the need for collaboration between misophonia and tinnitus advocacy efforts to enhance awareness and research. The episode concludes with a call to unite these communities for a stronger advocacy force.


Adeel [0:01]: Welcome to the Misophonia podcast. This is episode 18 of season 4. My name's Adeel Ahmad, and I have Misophonia. This week I talked to Hazel, who's the director and chief strategist at Tinnitus Hub and Tinnitus Talk, also pronounced Tinnitus, and you'll probably hear me alternate between those two. Hazel also has misophonia and did an episode on the Tinnitus Talk podcast earlier this year about misophonia. A number of guests who've come on here have mentioned tinnitus as well, so it was great to have Hazel on to talk about her perspective as a strong tinnitus advocate and misophone. We talk about what tinnitus is, how it feels to have it alongside misophonia, And then we get into her activities advocating for tinnitus and share some lessons we can apply in the Misophonia community to raise more awareness and research. I'll have links to the Tinnitus Hub in the show notes, but you can also just Google it. Remember to follow this show on social media at Misophonia Podcast on Instagram and Facebook. or just Misophonia Show on Twitter. I'll probably tag Tinnitus Accounts as well in the post for this episode. Also, you'll help this show reach more people just by leaving a quick rating wherever you're listening. All right, now here's my conversation with Hazel. Hazel, welcome to the podcast. It's great to have you here.

Tinnitus [1:28]: Thanks, Adeel. It's very good to be here.

Adeel [1:32]: Yeah, so why don't we talk about just kind of first, where are you located?

Tinnitus [1:39]: So I'm from the Netherlands, but I currently live in Finland. And yeah, I have quite an international background. Actually, I've lived in various countries in my life.

Adeel [1:51]: Very cool. Okay, so you're based in Finland right now.

Tinnitus [1:54]: Yeah.

Adeel [1:56]: Awesome. And kind of what do you generally do for work kind of day to day?

Tinnitus [2:03]: Yeah, so I work as a director for a sustainability research firm. And we deliver data on sustainability performance of companies to investors. And I'm leading a client service team at Sustainalytics. So that's my day job. And then I do a lot of volunteering next to that, which is related to Tinnitus. So I'm director of Tinnitus Hub. But I guess we will get to talk more about that later.

Adeel [2:34]: Yeah, well, no, I mean, we might as well get started now. It's really interesting. So because tinnitus comes up in, I don't even know how many episodes, but it's come up quite a few times. And yeah, it's great to have now somebody who's got both tinnitus and misophonia. And you also don't do all this advocacy work. So yeah, maybe start with tinnitus hub. Let us know what that's all about.

Tinnitus [3:02]: yeah sure yes so we're a non-profit organization that operates globally and mostly online um and we're uh purely volunteer driven uh and where the organization is run by people who all have tinnitus themselves who you know and and some of them pretty extremely um so they know what it's like and so one of the things we do is provide support to people with tinnitus who are seeking help online because that's obviously one of the first things people do these days when they're struggling with some health issues go and look for help online so very likely they will then run into the the support forum that we run called tinnitus talk tinnitus talk.com which is a place where people with tinnitus can connect and share information and support each other emotionally it's it's also heavily focused on things like research and treatments And there's a section about success stories where people can talk about, you know, how they managed to cope with their tinnitus or get better. So that's one of our main things is really connecting people with tinnitus who are with each other and creating an online community. That's great.

Adeel [4:27]: How long has it been around?

Tinnitus [4:29]: We just celebrated our 10-year anniversary. Oh, wow. Yeah. It was started by Marko Vesela. He was my co-director. He started it 10 years ago. And it kind of grew from just a few users to, I think, we have 32,000 members and at least a million or two million unique visitors per year. So, yeah, it's gotten pretty big. And we like to think of it as more than just a forum, you know, because a forum, you think of it as a place where people go to just like complain or vent. And obviously, yeah, obviously you can do that. But, you know, I think it's more than that. It's an online community that brings people together. And we also involve people actively in things like research. So we periodically run... online surveys to collect data from people and then we share that with academics so that's our way of contributing to tinnitus research through data collection because we're kind of in a unique position having this big online reach that we can you know collect data from many thousands of people at once um yeah do you send them surveys to do that or yeah yeah obviously the public forum is probably a great source of information as well but uh Yeah, that too. Yeah. So we've had researchers do data mining on the forum itself. You're right. So that's by itself a valuable source of information for research. But then we also run these surveys periodically to collect data. separately from the forum. Yeah.

Adeel [6:08]: Yeah, that's very cool. I was going to say that, you know, I was going to ask, like, how do you, you know, differentiate yourself with all the new, you know, Facebook groups and Reddit groups? But this is all obviously something that, you know, none of those things can do. They're not giving, they're not helping research. They're literally just, you know, forums that are kind of homogenous with all the other stuff you find on Facebook. So this is a very valuable resource. Yeah.

Tinnitus [6:34]: yeah exactly yeah the way i see it at the facebook groups it's it's just kind of a never-ending dump of you know comments but there's no structure you know there's a you know when you go into tinnitus talk.com there's a clear structure if you want to know about research you go to the research section if you want to know about a specific treatment we have all of them listed you know if you want to just introduce yourself we have a separate section for that if you want to read about other people's success stories we have a section for that you know and then on top of that indeed we do these research projects we try to involve the community actively in in you know the whole research endeavor and trying to also push for more tinnitus research yeah yeah

Adeel [7:26]: And how do you handle, so is volunteers running it? I guess there's people helping to develop it. Are there also people like moderating and maybe verifying just, I don't know if there's, you know, in our, in Misophonia, there's some debate on some forms of treatment and whatnot. I'm curious if you've had that kind of issue in your community and are there people on Tinnitus Talk just kind of trying to keep a handle on that?

Tinnitus [7:53]: yeah it's that's that's one of the problems with any online forum is that it's always a multitude of voices and you don't really know necessarily who to trust right um i think we have a couple of members who are like really knowledgeable and you know uh and that that probably know more than many, many doctors or researchers do about the topic. And yes, we do moderate in terms of keeping things well organized and well structured, but in terms of people voicing their opinions, well, they're free to do so, right? As long as they make clear that it's just their opinion and don't present their opinion as a pure fact, then they're free to... claim whatever they want to claim and and that is definitely one of the things about an online forum that can get confusing which is why we also offer these sort of you know other types of resources like the tinnitus talk podcast we do video interviews with researchers that we publish on our video channel and we're in the process but that's quite a big project to create some nicely presented written online interactive resources where people can get information and help that's objective and verified by experts. So we're working on that as well.

Adeel [9:24]: Very cool. And are the funding kind of donations from the community?

Tinnitus [9:30]: Mostly, yeah. Mostly we rely on donations from the community. And then we have one small grant at the moment. But it's really difficult to get grants for these types of work. So mostly you rely on the... generosity of individuals yeah because we do have a lot of costs to cover you know just running a website costs something creating a podcast has costs involved you know uh you know if you just look at the number of software subscriptions we have to manage for doing surveys for creating online uh graphics for you know managing the forum You know, the software subscriptions alone, you're probably into many, many thousands per year. So, yeah, so we do need to cover those costs so that we don't end up spending money out of our own pocket, which I've done in the past, but I think we're in a slightly better position now.

Adeel [10:28]: Yeah, I'm still doing that, but things are growing, so we'll see what happens. Luckily, I'm also a web developer, so I know how to make websites on the cheap.

Tinnitus [10:37]: Okay, that helps, yeah.

Adeel [10:39]: um but that's a slight digression um but yeah maybe we can um you know like i said before a number of people who have misophonia also have tinnitus but maybe for those who don't know maybe what it is or just think it's purely buzzing in your ears you want to give like a brief description of it and then we can maybe yeah talk about your misophonia later

Tinnitus [10:59]: Sure. So tinnitus, the general description of tinnitus that you will see almost anywhere is hearing a sound without an external source, right? So you hear something, but it doesn't come from the environment. There's no external source. So it must come from yourself, right? Somehow. That's generally it. And we know that Estimates vary between 10 to even 20% of the population has some form of this. But what I think often gets lost in any public communications or media publications about this is that there's a scale of severity. A lot of people have tinnitus in the sense that occasionally they hear something, then it disappears again. It's not chronic. uh or people have it and it's just very soft they only hear it when they're in a quiet room right but as soon as there's any kind of ambient sounds around them they don't hear it And then there's people, you know, who might even have loud tinnitus, but for whatever reason, don't really seem too bothered about it, right? So all of those people, you know, they are probably the milder cases, but the ones that, you know, we see on the tinnitus talk forum are probably the moderate to severe cases. At least they're struggling enough that they're going and actively seeking help online, right? And extreme forms of tinnitus can be completely debilitating. I've unfortunately engaged and encountered many instances of this amongst our members of people who can't work. They're just in a complete state of anxiety all the time. You know, they're afraid to, some of them are afraid to go out or go anywhere because it might make their tinnitus worse. So, you know, it leads to a state of complete isolation. You know, there's depression, anxiety, sleeplessness, all of these problems that, you know, people can just end up in a complete negative spiral. And unfortunately, in extreme cases, we have seen suicides because of tinnitus. and you know we feel that that tends to be you know you don't hear about that often and it's almost like people don't really want to talk about that but we feel like it should be because you know that's in the in the most extreme that can be the most extreme repercussion of of getting tinnitus and that's why obviously we need a cure

Adeel [13:56]: Yeah, absolutely. At the end of the day, we should definitely be talking about that more because, like you said, there could be a lot of the population, more of the population has it than probably realize. And if I'm not mistaken, it could get worse over time. So somebody could end up in a situation where it starts to spiral. Does it progress generally?

Tinnitus [14:15]: That's a good question. And I think similar to misophonia, there's just not enough data about how the condition progresses. To really assess that, you have to do large-scale, what they call longitudinal studies, meaning you follow the same group of people over many years. And that is very challenging and often expensive to do. So there's not really good data on that.

Adeel [14:43]: um so it's more you know anecdotal than than anything right i guess the popular belief is that oh somebody is listening to music throughout loud music throughout their life and then so they slowly get more and more tinnitus yeah is that like even remotely um you know nor uh part of the part of the actual path of tinnitus or am i just talking about spreading rumors again

Tinnitus [15:09]: no no that's that is often what we hear yeah we do often get um new members on the tinnitus talk forum saying oh i've i've had tinnitus for many years it never bothered me and now it's gotten worse so it could be you know because their hearing is also deteriorating deteriorating and obviously we know that hearing loss is you know probably the primary cause of tinnitus so if your hearing loss gets worse maybe your tinnitus gets worse it's not always that straightforward there could be other factors you know we also hear you know well people can get an acoustic trauma of course so if they have a very exposed to something an extremely loud noise that could trigger tinnitus even if the hearing sort of you know restores or partially restores they could be left with with tinnitus sometimes it's also just like life events something shocking or traumatic happens and the tinnitus gets worse so yeah we hear many different types of stories along those lines like i had it for many years it was quiet or it didn't bother me and and now it's bad yeah

Adeel [16:20]: Yeah, that's interesting, especially the psychological trauma aspect of it, because that has come up in a number of episodes here, where for a lot of people it seems to have started around the time of some deep turmoil or some life event or some loss.

Tinnitus [16:35]: Interesting, yeah.

Adeel [16:37]: And then some event that followed it was in an environment that where the person started to really notice sounds and it really started to make them anxious. So I was curious about one thing you said earlier about some folks who are unfortunately feeling very anxious and spiraling are saying that they're afraid to go out because they're afraid it would get it'll get worse is it can it get worse just by by surrounding yourself in a different environment like going out in the world and then does it return can it return back to some baseline when they get back home i'm curious how it modulates i know it varies a lot but

Tinnitus [17:17]: yeah so that's one thing i will i will uh put a huge disclaimer here on anything i'm saying because it's so individual right and i think that's so very important to realize that that i feel like it really does vary a lot from person to person and like if we talk about um sound sensitivity um some people are just seem much more sensitive to sound and you know you i have to wonder if also some people are just more susceptible to hearing damage for instance so that you know a noise that uh wouldn't damaged person A's hearing might damage person B's hearing. I don't know how much that has been really researched. So, you know, it's a difficult balance because obviously you want to tell people, you know, you should just go out and do the things you normally do because your anxiety will reduce. And that is true. You go out for a walk, usually you'll feel less anxious. Or you go out and meet friends, probably you'll feel less anxious. But it's also understandable that people are scared of exposing themselves to potentially loud noises. so it's i guess it's about finding the right balance there and um you know taking adequate means to protect yourself by maybe just carrying earplugs as backup just in case um but you know still trying to to carry on a normal life as much as possible

Adeel [18:57]: Right. So, um, yeah, maybe, maybe kind of, um, going, going kind of back, back to you. Um, I'm curious, when did, when did you start, um, realizing that, uh, you know, you had misophonia? Um, curious, like how, yeah, how far back it goes for you?

Tinnitus [19:15]: Yeah, so it's really as long as I remember. I don't even remember a time when it wasn't there. I think my earliest childhood memories include memories of misophonia, which is mainly...

Adeel [19:30]: And did you have tinnitus around the same time too?

Tinnitus [19:32]: No, no. So I got tinnitus much later. I was already in my 30s. And, you know, I have to suspect there's probably a link. And I do think... Yeah, I'm curious your thoughts on that. Yeah.

Adeel [19:51]: You probably have some time to think about that. Yeah.

Tinnitus [19:54]: Yeah. You know, if we think about misophonia as your brain somehow processing sound differently, then maybe that same brain would also be more predisposed when there's something like hearing loss or other kind of ear trauma to try to correct for that loss of input by inventing this phantom noise, because that's what tinnitus is, it's a phantom sound. that your brain sort of invents to compensate for something, for a loss of input. So, yeah, you have to wonder if there could be some predisposition there. Because both have to do with the way sound is processed in the brain. But, you know, that's sort of where... my knowledge ends and I always wish I understood this more in depth.

Adeel [21:02]: Yeah, like you said, there should definitely be more research on each one individually, but also a potential link. And so what were your... so you were probably in the Netherlands back then or was it typical, you know, your family members are first triggers or was there something different?

Tinnitus [21:23]: Yeah, it was my family members eating at the dinner table. And I just remember getting really angry about that.

Adeel [21:35]: And verbally, like a lashing out kind of thing or bottling it up?

Tinnitus [21:41]: The way I expressed it was mostly by imitating the eating noises, which, you know, it sounds like a super childish thing to do, but of course I was a young child, so I wouldn't do that anymore now, I think.

Adeel [21:55]: No, adults do the mimicking too, yeah.

Tinnitus [21:57]: Oh, adults even do the mimicking. I'm still very tempted to the mimicking. Maybe I still occasionally, maybe with my boyfriend, maybe I do it. yeah i try not to um but that's how i expressed it but then you know of course you learn very quickly that this is it's not socially acceptable right so then you try to yeah basically bottle it up which is probably also not good but as a child you just don't know how to deal with it and what did they say when what did your family members say when you were when you're acting like that was it just you know just

Adeel [22:34]: thinking that you're just acting like a kid, not that there's anything wrong, you know, not suspecting that there might be anything that should be kind of looked at.

Tinnitus [22:43]: Yeah, I don't think they ever suspected that it was anything out of the ordinary. I think they just thought I was being annoying, basically. Yeah. Acting out. I don't know. Yeah.

Adeel [22:57]: Did it start to seep into school as well?

Tinnitus [23:01]: I don't remember that so much. Well, yeah. Yeah. Maybe I do remember like sitting in class and someone's like eating an apple and it's the kind of like the loudest thing you can eat is a fresh, crunchy apple, you know.

Adeel [23:18]: It's designed to break your concentration.

Tinnitus [23:21]: that is like the worst yeah and even like i once i do think i recall once we were taking exams and it's like really you have to eat an apple while we're taking exams you know and the rest of the room is super quiet so it's all you hear is the crunching yeah it's really good echoing yeah yeah

Adeel [23:40]: Okay, so you made it out of school and probably even college. When did it start to, well, maybe I'm assuming, but for a lot of us, it tends to kind of proliferate as we reach adulthood. When did it start to kind of really blow up?

Tinnitus [23:56]: Yeah, so that's interesting that I didn't know that that was the normal progression until you sort of mentioned it now. I think it's kind of been the reverse for me, that it's gotten more manageable. Yeah, and I don't know why or how that happened. I'm very glad that it's the case. i think i'm less easily triggered i'm definitely still triggered you know probably more than once a day depends if five people around me or not but if there are people surely several times per day will be triggered but i don't i feel like it's not as bad as uh when i was a child and i don't really know why or how it's definitely my my tinnitus that's become the much bigger problem um for me yeah

Adeel [24:42]: So do your family members, even your family members trigger you less?

Tinnitus [24:49]: Yeah, I would say so. Yeah, just overall. Okay.

Adeel [24:53]: Yeah, yeah. Interesting. I guess, well, I guess you've already thought about kind of the link. I'm wondering if it somehow... If you noticed that it was kind of getting more manageable as you were maybe starting to realize your tinnitus and starting to maybe manage that. If there were any, maybe a crossfade of the two conditions or maybe you seem pretty independent, I don't know.

Tinnitus [25:22]: So definitely in the beginning when I had tinnitus, and I think this is very common, it's because you're hearing this constant noise in your head and you can't get rid of it and you can't escape from it. A lot of people also tend to become super sensitive to almost any noise. So, you know, a number of people with tinnitus will develop hyperacusis. I don't know if you've ever discussed hyperacusis on your show. Yeah. I'm sure you have, actually.

Adeel [25:53]: Like a super sensitivity to all sounds, basically, where everything sounds a little turned up.

Tinnitus [25:59]: yeah there's different forms of it i think that the common form is i think what they call loudness recruitment which is where noises that aren't objectively speaking or for others aren't that loud it seems like the volume is just turned up for you and there is something going on in the ear or in the auditory pathway that just turns the volume knob up so you hear everything much louder and so even sounds that are soft for other people can seem like ah you know oh it's too much And then the other, I think, rarer form of it is that sounds cause physical pain. So people feel pain in the ear. And it's only recently been acknowledged by researchers that, yes, the ear does have pain receptors. And it is possible that for some people, again, like normal everyday sounds that don't bother most people can actually cause physical pain to some people. so luckily i don't suffer from that but i think just a general you know some kind of over sensitivity or being more sensitive than normal to to sounds like certain sounds for instance will will aggravate my tinnitus right so it kind of it's like my tinnitus starts competing with the external sound so so there's there's something going on there where certain sounds just like Yeah, or I'm more sensitive.

Adeel [27:35]: What kind of sounds, if I may ask?

Tinnitus [27:36]: I don't want to trigger you, but... So... So I... It's... Sometimes it's... um so in the beginning when i got my tinnitus you try using all kinds of sounds to sort of mask your tinnitus right so you can if you go onto youtube or spotify you'll find entire albums that are meant to mask your tinnitus so it's it's just the idea it's just you listen to a soft or moderate like it could be a babbling brook or the ocean or a fire crackling and you try to find the one that sort of covers your tinnitus so you don't really hear your tinnitus too much but then some of those would actually make make my tinnitus more like trying to remember now which ones it was yeah i think it was certain types of like white noise I'm not an audio engineer so you know I don't really remember like there's many different types of white noise and then you have pink noise and brown noise I don't remember some of them actually seemed really bad for my tinnitus so again I think this is something very personal where a lot of people do use some kind of audio enrichment let's say to sort of mask or cover their tinnitus but it's it's very personal to try and find the right one i guess it depends on the frequency of your tinnitus the tones you know some people have just a pure tone some people hear multiple tones some people hear crickets some people hear ticking or typewriter like noises there's all kinds of yeah all kinds of

Adeel [29:25]: It's not just always a constant, okay, yeah.

Tinnitus [29:28]: No, mine is a constant high pitched tone. And I think that's very common, but there's all types of other sounds that people can hear. And I know some people hear like up to four or five different tinnitus sounds, which I'm, you know, I feel very lucky that I don't hear that. I think another individual variation is that for some people it fluctuates a lot. So it'll be sometimes very quiet, then suddenly it ramps up. Mine is quite constant, and I've always thought that that actually helped me to habituate to the sound, to get used to it to the point where... These days, I can go for many hours without consciously hearing it. I think it kind of helps that mine is very constant because I can imagine if it constantly fluctuates or changes, then it might be harder to get used to.

Adeel [30:24]: All right. So, oh, that's really interesting. Yeah, I didn't realize there was such a wide spectrum of it.

Tinnitus [30:30]: Yeah.

Adeel [30:32]: How have you, you know, in the Tinnitus Talk website, have you looked at kind of how often like misophonia comes up? I'm curious if, you know, there are, if it's, you know, it's probably not super common, but I'm wondering how often that correlation happens, at least from the form that you run.

Tinnitus [30:52]: Yeah, it certainly comes up from time to time. I would say the more common sort of... comorbidity, I guess that's what the healthcare professionals would call it, right? The more common comorbidity that we see is the hyperacusis. That's very, very common that people who suffer from tinnitus also have some form of hyperacusis. We definitely see misophonia mentioned. Not that often, and part of me wonders if it's just because it's it's so even less well known i feel like a lot of you know tinnitus is maybe not you know we would like to see it get more public recognition, of course. But a lot of people in the general public will probably at least have vaguely heard of it.

Adeel [31:50]: Right, tinnitus or tinnitus.

Tinnitus [31:52]: Yeah, exactly. Misophonia, I feel like it's so little known. Almost anyone, if you mention the word, they'll be like, what? Miso what? Yeah. right so i have to wonder if if a lot of people have it and don't even know the word for it because that's what it was like for me i literally did not learn the word misophonia until i was well into my 30s when i'd had it for almost my whole life

Adeel [32:24]: And by that point, had you been running tinnitus talk and we're all in the tinnitus community and everything and obviously in the sound sensitivity community, but had not heard of misophonia until later or?

Tinnitus [32:38]: No, I think it was before I developed tinnitus. But again, I was well into my 30s when I first read, I must have read some media article somewhere mentioning the term misophonia and maybe interviewing someone who had it or something like that. i was like oh my god it's it's it's a condition it's not like i'm not overreacting or i'm not crazy it's an actual condition that's recognized by neurologists and yeah there is a trickle of research starting to happen yeah there is there's really not much i looked it up it's you know if you think tinnitus is under researched which it is it's vastly under researched If you compare it to conditions that have a similar, let's say, socioeconomic burden, you can look at hearing loss, depression, even sort of unrelated conditions that have a similar burden on society. And they will have... no, not just two or three times, but like 20, 30, 40, 50 times more research going on. But then if you look at misophonia, that's even a fraction of the research that goes into tinnitus, goes into misophonia. It's very, very little.

Adeel [33:59]: Yeah, exactly. And apart from tinnitus topic, what are some of the other you know things that are happening in the community are there like convention we finally have like a convention that we've missed convention that we've had for a few years i'm curious like what are some of the maybe we can get some tips um um yeah or you know the miss funny community on on how to raise awareness um yeah but what are some of the things that have worked for in the in the tinnitus community and obviously tinnitus talk

Tinnitus [34:31]: yeah so there's something called tinnitus week which is every year in the first of february uh sorry the first week of february um which in which most of the tinnitus organizations participate so by tinnitus organizations i mean many many con well not many countries but some countries have something like a national tinnitus association right so there's the american tinnitus association the british tinnitus association etc and so um uh some of those organizations participate in in tinnitus week when they really sort of uh try to do a lot of public awareness raising and fundraising and uh yeah mostly it's it's like awareness raising focused um and then last year for instance there was a petition that was started in the UK by the British Tinnitus Association to appeal to the UK government to put more money into tinnitus research. And it was something we promoted heavily on Tinnitus Talk, like trying to engage as many people as possible to put their signature on the petition, basically. And it ended up gathering over 100,000 signatures. you know, on the one hand, I feel like it should be more. On the other hand, I think it's, you know, it's definitely bigger than previous efforts that were undertaken.

Adeel [36:07]: For a community that has, you know, probably your biggest forum is 32,000 members. That's pretty impressive that you're able to just mobilize a petition and get 100,000 signatures on it. That's great.

Tinnitus [36:23]: yeah so i think it's those kinds of things where you can really rally an online community to do something that you know it doesn't take a huge amount of time for them to do um but it can be uh impactful um and then similarly we there was last year there was um in the us you have an uh government agency called the nidcd and i think they fund uh all the all the public funding towards like

Unknown Speaker [37:00]: Thank you.

Tinnitus [37:02]: I think it's hearing and vision and some other areas of research. I don't remember exactly, but the public funding for those areas of research comes from that government body. They called for the general public to give them input into their five-year strategic plan. And we then put together an information package and appealed to everyone in the community to go and submit their ideas to the NIDCD and basically just appeal for more funding for tinnitus research. So we mobilized a lot of people to do that. And, you know, in the end, it's very hard to then assess what the impact is, right? Because these government agencies are sort of a black box. They will then start to allocate funding and you don't know exactly whether you had an influence or not. But at least it's something you can do together as a community to try and move things along and get more funding, etc.

Adeel [38:06]: That's amazing. I'd never heard of the NIDCD and I live here. So that's something I'm going to be researching after this and we'll have to have a march to their offices or something. Yeah. Yeah, very cool. And are you seeing, for your tinnitus at least, are you seeing like a medical professional? I'm curious, I'm assuming you go to an audiologist for tinnitus?

Tinnitus [38:29]: Yeah. Yeah. So when I first got tinnitus, I I went to my GP a couple of times and it was one of those things where I just had a bad experience and unfortunately, and I'm sure you've heard many similar stories when it comes to misophonia, but many people who go to their doctor with tinnitus basically have a bad experience because their doctor either you know doesn't really know what it is or they just kind of brush it off they don't understand how severe it can be for some people um they're often not even tinnitus would be uh well known but that's that's unfortunate yeah you would think so if if it's really true that you know more than 10 of the population has it they must frequently see patients with tinnitus but yeah many people get this response of yeah well there's nothing i can do you just have to learn to live with it which is broadly speaking true because usually there isn't that much they can do in terms of, you know, removing the tinnitus. But you still feel kind of like you're just being brushed off, right? You're not being taken seriously. And the least a doctor should do is always refer you to an ENT doctor and an audiologist because it is very important that, you know,

Adeel [39:55]: That's ear, nose and throat or ear, neck and throat.

Tinnitus [39:57]: Sorry, ear, nose and throat doctor. Yeah, yeah. And an audiologist. So it's very important that you get your hearing tested because obviously that's the most common culprit of tinnitus is hearing loss. So it's important that you know if do you have hearing loss. because if you do you know you could consider hearing aids sometimes that also helps a bit with the tinnitus it's very important that an ENT doctor checks if you have like an infection in your ear or some other kind of condition that is damaging your ear because then that needs to be treated so in some cases kind of treating the underlying cause can also relieve the tinnitus So it is important that these things are checked out. But often, you know, so I had to beg my GP for an ENT referral. And I later heard that the or read that the clinical practice guidelines, which are just. kind of general standards that um you know healthcare professionals are are supposed to follow they state that anyone presenting with tinnitus should always automatically be referred to an ent so the fact that i had to beg for the referral doesn't make any sense at all

Adeel [41:16]: Well, unfortunately, this is the kind of behavior that's all too common, I think, with these kind of quote unquote fringe conditions. Unfortunately, that'll change.

Tinnitus [41:27]: Yeah, hopefully. Yeah. So I got everything checked out. They found some hearing loss. It's not a lot, it's just a little bit of hearing loss, but that can be enough to trigger tinnitus. And then there isn't much else that the medical profession can do. could do for me and that's the case for for many people with tinnitus what it comes down to then is just coping right so finding ways to cope with the condition and sometimes people get referred to a cognitive behavioral therapist which can yes it helps some people I certainly you know want to be careful about making too many claims here because unfortunately now I see some of the CBT practitioners online claiming that they can successfully treat anyone with tinnitus and I just don't believe that's true.

Adeel [42:35]: Yeah, intuitively, I'm like, well, with misophonia, that makes maybe a little bit more sense because of the anger issues and the anxiety. But with tinnitus, at least coming into this talk, it seemed like it was more like a physical thing. So how would CBT kind of help that? But I'm in no position, actually.

Tinnitus [42:54]: Yeah, so you're right. So there's the tinnitus sound, which is there right and no amount of cbt is going to remove the tinnitus sound unfortunately if someone finds a way please yeah that would be great but and then there's the emotional reaction to the sound and that's what the cbt practitioners are trying to treat is to reduce the emotional reaction by sort of trying to objectively look at you know, what thoughts you're having about your tinnitus and assessing, you know, is that realistic? You know, is this really something to be afraid of? That, yeah, well, I'm no expert, so I might be explaining it all wrong, but yeah, that's the general gist of it.

Adeel [43:43]: And then that can help reduce... Sorry, it's late in the podcast. We can say whatever we want now.

Tinnitus [43:48]: So that can reduce the anxiety for some people, I suppose. I kind of just found my own way, I guess, to... to cope with the anxiety and these days i don't really have very much tinnitus related anxiety it's it's i get bothered by it still okay it it depends on you know if i'm tired i might feel more bothered if i'm stressed i might feel more bothered late at night when I'm lying in bed and I have always had problems falling asleep, then sometimes I'm like, oh, why is that sound still there? But it's certainly not as bad as it is for some people who I know suffer immensely. So I think I've caught myself lucky that I'm coping reasonably well.

Adeel [44:39]: Yeah. I mean, you're, well, you're thinking about it a lot. You're advocating for it a lot. And so you're obviously kind of taking the initiative for your own, for your own health there. That's, and I'm glad to see you're getting results. Well, what are some of the ways that you kind of have managed the anxiety you think? Is it mainly reducing stress or are there other kinds of things that you do?

Tinnitus [45:01]: Yeah, for me, it's going for walks, doing yoga. I did try mindfulness meditation. I'm a strong believer in meditation because it just allows you to become more of an observer of your thoughts and emotions. And if you practice that, you know, many, many times every day, then it... in many cases helps a lot with coping with anxiety. It's just difficult to keep up the discipline to do these things every day.

Adeel [45:43]: Unfortunately, it's in the times that you need it the most, like when you're stressed out that you don't have any time to usually... That's exactly it, yeah.

Tinnitus [45:50]: When I'm super overworked and stressed, I don't even take five minutes for self-care and that's exactly when you should be doing it, but yeah.

Adeel [46:03]: Well, very cool. Yeah, we're heading, you know, towards the hour. I'm curious, yeah, is there anything else you'd like to kind of share with the audience? And many of my, you know, I know have tinnitus listening. Yeah, anything you want to share about tinnitus, misphonia, the link, or just the ways that you've made me lessons we can take?

Tinnitus [46:27]: yeah so i think it would be great to sort of combine forces and you know i think the more people come together and advocate for more uh research on let's say all these kind of hearing related conditions yeah the better right so if we can you know if there's there's probably misophonic misophonia communities out there um some of them might also have tinnitus some of them not but even if if you don't you know i would say you know come and take a look at tinnitustalk.com listen to the tinnitus talk podcast and

Adeel [47:10]: reach out to us if you're interested in doing any form of advocacy because i think you know there's definitely power in numbers i like that a lot and i think uh maybe uh you know you and i can keep a dialogue like a few years i had never heard about the nidc whatever it was and so you know anytime there's something going on i'm sure a bunch of a lot of us would love to kind of um help in any way we can and the other way around and so maybe at our kind of our quote-unquote level where we're kind of uh you know doing some kind of advocacy maybe we can just kind of like keep each other in the loop on things and uh yeah i'm uh i've always yeah i've been uh happy to talk about tentative stuff when people bring it up on the podcast so i'll yeah i would love to um share as much as i can uh as well because yeah i think definitely strengthen numbers uh especially our little french communities and i think um I think we will reach everybody who, or most people who have it eventually, but we just got to think and right now work together to get there. And I think we will find those numbers because like you said, so many of us have this condition that we don't know it.

Tinnitus [48:21]: Absolutely. Yeah, I'd love to work together. So yeah, let's stay in touch and see where we can collaborate.

Adeel [48:28]: Thank you, Hazel. Really great work in building the tinnitus community and raising awareness. Lots of good tips and lessons for advocates in the misophonia community, too, here. If you liked this episode, don't forget to leave a quick review and just hit the five stars wherever you listen to this podcast. Music as always is by Moby, and until next week, wishing you peace and quiet.