Tinnitus Recovery Case Study & Why I Waited 6 Months To Share It…

Ben Thompson, AuD.

Hey everyone, this is Dr. Ben Thompson, audiologist. I’m here today with Kevin. Kevin has worked with me via Telehealth. Kevin, give us some backstory about when you first developed tinnitus, what was your real authentic experience of how that started?

Kevin

Yeah, so, when I first got tinnitus, I had a blocked ear and I went to the doctor to get the water irrigated and unfortunately, as a result of that, I came away with a noise that sounded very much like a kettle whistle in my ear. It turned up at 4 or 5 hours after having the procedure. And at first, I didn’t think too much of it. The doctor told me it was temporary, it will go away. And then, a couple of weeks later, it really hadn’t and I suspect like many of your patients, that freaked me out. And then, not only did it freak me out, the tinnitus just got louder. And then it got louder, then I had a COVID vaccine, and it got louder still. And then I started some anxiety attacks, some panic attacks, and that’s very much not like me. That’s something that I’ve never suffered from at all, ever. And it was at that point that I decided I need a bit of help here. And that’s when I went, and really sought you out.

Ben Thompson, AuD.

Talk us through those first few months, what were the major challenges day-by-day? What was hard for you? Was it sleep, was it work, was it family relationships, all of it? Concentration? What was going on?

Kevin

I think it was the fact I didn’t feel in control. So my job is I control projects so I’m used to having a level of control and I’ve always touched with, been in very good health so I’ve never had a situation where I felt out of control. And it’s very much something that I felt out of control. Not only did I feel out of control, I felt that the noise that started off in my ear, progressed to my head, and my brain. And you’re quite right, I found it very difficult to concentrate. I found it very difficult to sleep. And subsequently, my energy levels dropped really badly. And I had much difficulty concentrating as well.

So I was in quite a dark place. For a good month, two months as well actually. And I have got a couple of friends that have suffered with tinnitus, one of them said to me “The first six months are the worst, and you’ll learn to tolerate it.” One of them, whose had it for years, got to a place where he said “You know what? After a few years, I don’t even hear it for a few days.” And that gave me a lot of hope. And really, with yourself as well explaining the journey I was on, explaining what to expect, managing my expectations, that brought hope. I think that’s one of the things your trip really helps. Cause if you kind of know what to expect, and you’ve got a bit of hope about that, then you think ‘I’m on a journey’ And if I’m on a journey, I can, I can get better. And we’re 6 months into the journey and I’m very much in a different place to where I started at.

Ben Thompson, AuD.

Your friends told you, look, passively, this gets better. Your brain and body adjusts, and this gets better. What I’ve learned working with you, is you’ve also taken an active role in doing things. Whether that’s everyday, every week, or just bringing tools into your toolkit, you’ve taken somewhat of an active role to help reduce the perception of the sound. What has been your toolkit? Also I want to add, that, your tinnitus started 7 months ago, from today, that we’re recording this video. And we’ve been seeing each other at an interval of about one month, for the last 6 months. Your condition, your state of body, your state of mind has changed. Tell us about what has changed over the last 6 months, and what is in your toolkit?

Kevin

Okay so, couple of questions there. The toolkit was quite an interesting one. So one of the things you first said to me was, why don’t we try tinnitus retraining therapy? Why don’t we get some ear level generators on you play some white and pink noise. Why don’t you invest in a white noise machine At that, when you’re trying to sleep as well. I thought, okay let’s try that we’ve got nothing to lose, let’s give it a go. And that’s quite a strangely experience because when you have this noise on with the tinnitus noise, you have no idea whether it’s working or it’s not working. For 6 months in, now 7 months in now, I’m in a very different place and I’ve got to attribute some of that to that mechanism. One of the biggest things that you said, and I was most skeptical about, was meditation and calming your body down. I play a lot of sport, calming my body down is not something I do very naturally at all. But one of the things I have learned to do is box breathing. So actually, just trying to calm myself down for a few minutes everyday. Or if the tinnitus starts getting a little bit louder, or I feel a little bit stressed, taking myself away and just consciously trying to calm myself down. And I think that has helped an enormous amount. Other toolkit items, I have cranial psychotherapy every couple of weeks which is akin to someone very lightly touching your nerves around your head and trying to just work some space in your head. And it’s a similar thing, I don’t know where it, it’s not an ah-ha moment. None of this is an ah-ha moment. None of this you go in and feel instantly like it’s worked. But combined, the sound therapy with calming myself down, having the cranial work, and diet as well. Cutting out all caffeine, trying to reduce down sugar, which is difficult because I’ve got sweet teeth, and just kind of trying to look after myself. I think all these things together, clearly, has had some effect because I’m in a very different place now to where I was 6 or 7 months ago.

Ben Thompson, AuD.

Do I have your permission to share the answers to the questions I asked you initially, at what percentage of time were you aware of tinnitus? How loud is it?

Kevin

Yeah, absolutely.

Ben Thompson, AuD.

When I first asked you this 6 months ago, one month after it started, you said, 90% of time you were aware of your tinnitus. Thinking about it, hearing it. You said, 70% of time you were annoyed or bothered by your tinnitus during waking hours. And you said the loudness of your tinnitus was three out of ten volume, is that correct?

Kevin

Yeah, so unlike I’ve not, I’m not a person that had really loud tinnitus. But what I did have is very complex tinnitus. So I had a really annoying kettle whistle in the right hand side of the ear that just wouldn’t go away. My tinnitus felt like it spread to my brain and felt very much at the front of my brain. And it restricted my ability to think clearly. In terms of my persona, I don’t know if you can recall, Dr. Ben, when we first went there, I couldn’t speak like this. I was very much anxious, quite panic-y. So yeah, I know that some of your listeners will be listening to this and thinking, ‘hang on a sec, this guy only ever had a three or a four star tinnitus, that’s not that bad, why is he here speaking?’ Well actually, it wasn’t so much the volume it was what it was doing and where it was and how it affected my ability to think and concentrate. And the tools that you put in place for me, and the tools that I’ve followed, has allowed me now to reduce the anxiety, reduce the panic, and in fact, eradicate the panic and eradicate the anxiety. And get to a place where I feel like me again, and that’s absolutely fantastic. I would like for it to go away, I would like for it to be less invasive. It still sometimes makes me sad, but I can live my life normally and I have no problem concentrating, no problem going to sleep. And actually I can do everything that I want to do. And I think seeing the quote previously where people have come out the other side of this and say tinnitus doesn’t define them anymore. Six or seven months in, I can absolutely say tinnitus doesn’t define me. But I would really like it to go away.

Ben Thompson, AuD.

Thank you so much for sharing that, and when I asked you most recently “what percentage of time are you aware of tinnitus?” You said 30% and most recently you’ve said, “well that’s quite variable on if I’m in my home office setting, where it’s quiet and I’m sitting down then I’ll hear it. If I’m outside and I’m moving about, then I barely hear it.” Talk us through, what’s your advice for someone who might be earlier on in this journey about how to set up the right environment, the cognitive tools, the sound therapy, the daily habits. What’s your advice to your former self, maybe three or six months ago?

Kevin

Yeah. I think my advice would be, first of all, seek help. Don’t suffer in silence is the biggest bit of advice I would give. And certainly if you feel you’re in a system, so in the UK we’ve got the NHS, and don’t just trust a system. Proactively go out there and seek help and advice. Because then you can start to put the tools in motion. The second bit of advice, don’t give up hope. I was lucky that I’ve got a couple of friends that were able to share positive experiences with me. I also proactively looked for tinnitus success stories. Don’t give up hope. See the positive side of that. In terms of setting up your environment, so important to try and keep yourself calm. For me, I thought diet was something I should look at and it absolutely does make a difference. I can tell you 100% if I have a sausage, my tinnitus will spike. And I’ve tried a few times because I quite like sausages, and every time I spike. So look at your diet. In terms of keeping yourself busy, the worst thing that can happen to me is if I’m sitting there and I just let my brain wander. It will wander to tinnitus. Now, if I’m outdoors doing a bit of gardening, doing a bit of DIY, playing a bit of sport, I don’t hear the tinnitus at all. And I think it’s just cause your mind is doing other things. So that’s so important. Yeah, I mean, just look after yourself.

Ben Thompson, AuD.

Thank you, Kevin. We had spoken earlier today on the Telehealth session and you said the first stage of your journey was desperation. Your life had changed dramatically, you wanted to do anything that could help you immediately. And then you said the second stage of your journey, which is where you are now, is, I can live with it and I want it to get softer. And the third stage of the journey, which is developing, we’re going to see to what degree can you habituate, to what degree can you have your tinnitus change? Whether that’s the perception, how much it affects you, how much it bothers you, or hopefully also the volume. And how long were you in that first stage, what you called that sort of desperate stage?

Kevin

Yeah I would say certainly three or four months. The first month was one that I thought I could manage, then it got a whole heap worse. And months two and three for me were horrendous. I never felt anything like it. Then actually after a couple of months of not just working with yourself, but with the cranial therapist, and kind of just working through things, it starts to get better And I think that gives you hope again. When things start to get better, you’ve got hope that things can get even better. And actually I experienced two, three months of really rapid progress after that. And I think what also helped was I went from a stage of, I think my wife called me something like a walking zombie, which was certainly month two and three. To getting back and doing things that I enjoy. And doing things that I love to do. And that’s quite hard, because you don’t know how you’re going to react to it. But that is probably the biggest win for me is I can now do everything that I used to do and actually I can go back and enjoy it. And for me in particular, that’s sport. And I think the moment that I realized, you know what? I can actually do everything that I enjoyed before, and I can live with it. And that was a defining moment.

Ben Thompson, AuD.

Thank you, Kevin, this is very important to share this story. And the reason we’re recording this now is not because this is the end result, it’s not because this is the way it will be forever, but it’s because things are a lot better than where they were six or seven months ago after this started. And we wanted to record, in real time, how it is for someone who has gotten better after six months but the loudness of tinnitus hasn’t really changed. Have any last words here?

Kevin

My last words really would be, especially for people which are in month one or month two of this. Please persevere with your tools. Try and really identify what was really important in your life and what will be important to your life going forward. And try not to let tinnitus define you. And try and have hope that it will get better. That would probably be my words of wisdom and that’s so difficult in month one and two. But all I can say to you is I was in a very different place to where I am now and I hope that you’re in a very different place a few months down the line as well.

Ben Thompson, AuD.

Thank you so much, Kevin. For any listeners, please enjoy the other podcast episodes, take this message of hope from Kevin and learn from what he used. And remember your history, your experience, your tinnitus is probably different than Kevin so treat your individual case with your own set of tools and reach out if you need help. Thank you so much, Kevin. And we’ll talk to you guys soon.