Episode 18: Tinnitus Realities — Steve and Sean

[Tinnitus Talk]

This episode is the first of what will hopefully become a series about the realities of living with tinnitus. Obviously, it's different for everyone, and that's one of the messages of this podcast.

The episode features two well-known members of this community: @Steve and @Jack Straw – thank you both for taking part and sharing your experiences with the world! Video version is available for our Patrons, so consider supporting our work!

We discuss highs and lows, coping strategies, the concept of habituation, seeking medical help, following research, and more.

And don't worry, our beloved science-focused episodes will continue - and be the primary focus of the podcast.

​

Listen on:

• Tinnitus Talk Podcast (incl. timestamps and transcript)
  
• SoundCloud
  
• Apple Podcasts
  
• Spotify

We welcome any discussion, but please keep the following in mind when commenting:

• Off-topic comments, i.e. not directly responding to the content of the podcast, will be removed. So please do listen before commenting!
• While we welcome constructive criticism on ideas or policies, we do not tolerate direct attacks on individuals.

This episode was produced by @Markku and @Hazel, with the transcript created by @Andrea Rings. Do you want to volunteer as well? Let us know!

We thank our Patreon supporters for making this podcast possible.

Don't forget to:

• Send Ideas and Suggestions for Future Podcast Episodes

Sharing Is Caring
Share the podcast on your social media and with your tinnitus friends!

 

[Ed209]

Great episode as always. This will help those who are new to this immensely because it's reassuring to hear from those who have lived with the condition for a long time.

 

[Jack Straw]

Thanks for the invite!

It was really enjoyable to talk about tinnitus in a relaxed setting like this!

 

[Johan001]

Brilliant podcast, thank you very much. It's good to hear @Jack Straw mentioned that removing masking increased habituation. I'm currently struggling with it: as long as I remove masking I get into a panic mode.

 

[Jack Straw]

Brilliant podcast, thank you very much. It's good to hear @Jack Straw mentioned that removing masking increased habituation. I'm currently struggling with it: as long as I remove masking I get into a panic mode.

That was my personal experience with habituation. Everyone is different so you need to find what works for you, but it's good to change it up.

 

[Johan001]

That was my personal experience with habituation. Everyone is different so you need to find what works for you, but it's good to change it up.

Thank you! That's what many fellow sufferers have been telling me too - remove the masking. I am trying to have some times per day to concentrate on my tinnitus and breathe, sort of meditating to it as @Hazel mentions in the podcast. However, I only last a few minutes before I panic and reach for the masking. I'm certain though that this is the way forward, I can't be running away from it for my whole life.

By the way, when you guys mentioned that some people are not wired for habituation, that scared me... As a typical OCD that I am, I think right away, what if I fall into that group

 

[racedy]

Great episode. I thought it was fascinating that higher frequencies are cut out of recorded music these days, so we're missing those inputs if we listen on a device (rather than live).

@Johan001, I think there have been studies about habituation difficulties in folks with ASD. It likely feels more difficult to habituate to something you find stressful / panic-inducing like tinnitus rather than something more neutral, like the sound of rain. But take any second you don't hear your tinnitus as a sign of habituation success!

 

[Johan001]

Thanks @racedy. I am not losing hope, as 17 months is still a relatively short time... I just realise I am not in the group of people, many of whom I see, who habituate in the first 6 or 12 months. Perhaps it's my OCD spectrum indeed.

 

[Tommi_boi]

I haven't logged in here for such a long time but I wanted to show my support for the Tinnitus Talk Podcast.

I listened to the first episode and really enjoyed it. Great job guys.

 

[Expeditus]

This has been one of the most helpful episodes. It's nice hearing people discuss their experiences.

 

[Tanni]

I loved this episode.

I don't usually listen to the podcast as a lot of the episodes are research-based and would probably go over my head, just like the research threads do! But hearing how Jack, Steve and Hazel cope with tinnitus was so helpful. It made me feel less alone.

Also really helpful for those new to tinnitus, I think. On this forum, it can sometimes feel like you are being asked to pick a side: advocate for a cure, or try to cope with it. I have never understood why a person can't do both at once. And I think this conversation was the perfect balance of those two things.

My favourite parts, that really spoke to me (hope it's OK to quote them here):

Jack: I know there are some people who are definitely going to see this and say, oh, how could they speak on it? They're not miserable like me. It's like, no, I was you. I was there, I still am there sometimes, but I'm not gonna let that dictate my entire life, every second of my day.

Jack: Sometimes habituation can happen to someone very quickly, {...} Hazel, you said it took you about four months. I remember it took me about two years {...}. It is a long spectrum, and no one's gonna be able to tell you how long it will take you, but I would like everyone to give it a chance and to wait it out and never lose hope that it could happen to you.

Steve: I don't accept tinnitus because I want the cure and I wanna do what I can to help get a cure, but at some point you have to accept, I am a person with tinnitus —that I don't accept that I'm gonna have it for the rest of my life, because I'm gonna do what I can to get rid of it. But I have to accept that it's there, and it's that sort of acceptance of having it, and then you're just like, right, now I need to move on..

Also, I could listen to Steve's accent all day

Thanks for putting this together, guys.

 

[Jack Straw]

I loved this episode.

I don't usually listen to the podcast as a lot of the episodes are research-based and would probably go over my head, just like the research threads do! But hearing how Jack, Steve and Hazel cope with tinnitus was so helpful. It made me feel less alone.

Also really helpful for those new to tinnitus, I think. On this forum, it can sometimes feel like you are being asked to pick a side: advocate for a cure, or try to cope with it. I have never understood why a person can't do both at once. And I think this conversation was the perfect balance of those two things.

My favourite parts, that really spoke to me (hope it's OK to quote them here):

Jack: I know there are some people who are definitely going to see this and say, oh, how could they speak on it? They're not miserable like me. It's like, no, I was you. I was there, I still am there sometimes, but I'm not gonna let that dictate my entire life, every second of my day.

Jack: Sometimes habituation can happen to someone very quickly, {...} Hazel, you said it took you about four months. I remember it took me about two years {...}. It is a long spectrum, and no one's gonna be able to tell you how long it will take you, but I would like everyone to give it a chance and to wait it out and never lose hope that it could happen to you.

Steve: I don't accept tinnitus because I want the cure and I wanna do what I can to help get a cure, but at some point you have to accept, I am a person with tinnitus —that I don't accept that I'm gonna have it for the rest of my life, because I'm gonna do what I can to get rid of it. But I have to accept that it's there, and it's that sort of acceptance of having it, and then you're just like, right, now I need to move on..

Also, I could listen to Steve's accent all day

Thanks for putting this together, guys.

I'm glad you liked it! Thanks for listening!

 

[OnceUponaTime]

Great podcast!

Wait, where's @Jack Straw's picture???

 

[Jack Straw]

Wait, where's @Jack Straw's picture???

 

[Hazel]

@Ed209, @Tanni, @Johan001, @racedy, @OnceUponaTime, @Expeditus, @Tommi_boi

Thank you all for your positive feedback!

I also want to report that when we sent out our newsletter announcing this episode, we received over 100 responses in two days, and all positive! It seems we've tapped into a very different audience than with our research episodes, and there clearly is a need for this kind of content. Very heartwarming to hear that people find this helpful. We should definitely do this kind of episode more often!

 

[Ed209]

Great podcast!

Wait, where's @Jack Straw's picture???

l previously posted Jack Straw's picture in the photo album. To those who are curious, here it is:

 

[Jack Straw]

l previously posted Jack Straw's picture in the photo album. To those who are curious, here it is:

View attachment 47778

I think I look good in my pirate costume! Lol.

 

[Johan001]

I also want to report that when we sent out our newsletter announcing this episode, we received over 100 responses in two days, and all positive! It seems we've tapped into a very different audience than with our research episodes, and there clearly is a need for this kind of content. Very heartwarming to hear that people find this helpful. We should definitely do this kind of episode more often!

Yes please, that'd be awesome.

Personally, I would be interested to hear from habituated people, what strategies they applied to get their lives back. There are many psychological exercises to fight the anxiety. I am currently working on a few on those. Unfortunately I'm still very debilitated, but my dream would be to share it one day after it's been proven that they have worked for me.

 

[Flet]

Great Podcast!

Towards the end of the episode there was mention of a free app on iOS devices. However, I couldn't quite catch what the app is called so I can get it. Any help would be appreciated.

 

[OnceUponaTime]

Very heartwarming to hear that people find this helpful. We should definitely do this kind of episode more often!

It was great. An episode we can all relate to. I think @Ed209 once talked about "the faces of tinnitus" when we started the photo album thread and how we should make an ad campaign for that. The photos and the podcast stories show the reality and severity of tinnitus in a softer and real way. These kinds of podcasts are the ones we can share with our family and friends. It will help them understand better how tinnitus affects us daily and that it is not only us suffering with tinnitus, but that there are many people with this debilitating condition. By listening to the podcast, they can see the many ways they can be of help and what is appropriate to say and what is not. For example, when my doctor at the time told me that there was no cure for tinnitus and to go home and live with it, he sent me into a panic attack and terrible anxiety. Had he been careful with his words, it would have saved me from a lot of anxiety. We simply need a cure, we need compassion, we need people to understand how is life for us living with tinnitus. We need to educate them more on this condition if we want to be understood.

The podcast and written stories of members, together with their photos, are an excellent way. They don't all have to be success stories, because in reality, we don't all have success stories of habituating or tinnitus getting better. Simple stories about how they do life with tinnitus, how they got it, what helps them would be great. There are many members in this forum whose stories are worthy of being heard. (If they want to share them, of course.)

Anyways, lots to say about this topic. So glad you put this podcast together.

Fantastic job as usual, @Hazel, @Jack Straw, @Markku and @Steve.

Warm hug to you all,
Once

 

[OnceUponaTime]

@Jack Straw, totally handsome!

 

[Leila]

What I liked about this episode was the many times I thought, "Yes, that's me!" and "Finally somebody who knows what they're talking about!"

It gets so frustrating at times, trying to explain to people what it's like to live with tinnitus and hyperacusis and know from the very beginning that, fortunately for them, they'll never be able to get it. So it was great to get to listen to other tinnitus sufferers talk about their ways of coping and the ways they live their life. Thank you @Hazel, @Jack Straw and @Steve for sharing something so personal with us.

 

[rid0871]

I hope you do more of these episodes, they do help. I listen to them on my Audible.

 

[rid0871]

Yes please, that'd be awesome.

Personally, I would be interested to hear from habituated people, what strategies they applied to get their lives back. There are many psychological exercises to fight the anxiety. I am currently working on a few on those. Unfortunately I'm still very debilitated, but my dream would be to share it one day after it's been proven that they have worked for me.

Could not have said it better myself...

 

[Tanni]

There are many members in this forum whose stories are worthy of being heard. (If they want to share them, of course.)

I think you should be interviewed, Once! Would love to hear your story.

 

[OnceUponaTime]

I think you should be interviewed, Once! Would love to hear your story.

Ahh, maybe someday!

10 years of ups and downs and the story continues!

How are you, @Tanni?

 

[DougAtkins24]

I just want to say this was by FAR the most impactful and relevant episode of your podcast that I have listened to. I don't participate in forums but I felt I needed to react to this episode. I live in Brooklyn, NY and I've had tinnitus for 4 years now as well and I would say it's a severe case, but I guess that's all relative. I got it from seeing and playing live music most of my life without ear protection from a lack of awareness. In fact, I wasn't even aware of the existence of tinnitus until I got it myself. It has severely impacted my life in many ways and I'm still working through it. For the first 6 months, I thought I would never play music again, see a concert again, even wear headphones again as my hyperacusis was so bad. I went through a year of CBT, tried Levo and several other treatments including benzos and antidepressants. Now I do everything I never thought I'd be able to do again although it's not easy. I still play in a band and am back to seeing concerts, going out, all things in life. I am always working on getting the correct ear protection and finding new ways of coping. It is still a daily struggle and life is not nearly as easy as it used to be. I've had several increases in volume and new tones and flare ups and it's exhausting. My energy level is low and I feel mentally and physically exhausted a lot more than I should at my age of 37. But I know that it can get back and I continue to have hope for the future.

IMO, listening to other people's perspectives and experiences is easily the most important thing for people with tinnitus to hear. Discussions with doctors and professionals are great and all but I think we know it's going to be several/many years before any actual medical treatment is released. I think you should have different people from all walks of life on your show at least once/month so they can share their experiences and ways of coping, tackling, beating tinnitus. I like hearing people who are struggling because it helps me understand that I'm not a lone and I also know there are millions of success stories out there of people who WERE struggling and now are not, and that is just as helpful to hear if not more.

I hope to see more of this from you guys. I'm happy to contribute in anyway and share my experience. There's nothing more important.

 

[Flet]

Towards the end of the episode there was mention of a free app on iOS devices. However, I couldn't quite catch what the app is called so I can get it. Any help would be appreciated.

I found the app, it's called "TinnitusPlay". I'm having some difficulty in using it. And when using the Match and Test feature, though there is an option to "Save" your sounds, it does not. Seems like a glitch in the app.

Anyone with experience on the app who can help?

 

[catchthebus]

I like this new series which shows how real people live their lives with tinnitus and deal with the reality. It's that kind of content that can help me the most with where I'm currently at - struggling with my tinnitus and finding ways to keep going in spite.

 

[Hazel]

Towards the end of the episode there was mention of a free app on iOS devices. However, I couldn't quite catch what the app is called so I can get it. Any help would be appreciated.

It's called TinnitusPlay, and we co-designed it ourselves!

We have a separate thread about it here. Let us know what you think, and leave a review