I Have Tinnitus — But Tinnitus No Longer Has Me

This is a story, a long one, that will encapsulate the past 15 months of my life with tinnitus. My hope is that someone who may be newly diagnosed or new in their tinnitus journey may read this and take comfort as I know that if I read something like this back in my dark days, it may have brought me to 'brighter' days sooner. For someone that is reading this and has suffered from tinnitus for even longer than me, perhaps there's something here for you too, but please know I feel your pain and I wish all the best healing thoughts for all of you.
----------

It was the middle of the night on Thursday, March 7th, 2019. I was seemingly awoken by a high pitched ringing sound in both ears where my first thought was "What is that?" and second thought once I realized it was in my own head was "Ugh, this will suck if this doesn't go away?". I had been battling a mild case of the flu that I came down with while traveling for work and thought maybe the air pressure was off in my ears or something since I had taken a couple flights recently, oh well - I thought.

A day or two went by and I convinced myself this was Eustachian Tube Dysfunction due to the flu, especially since I was having tinnitus, plus some major aural fullness (ear popping) - apart from being congested. I went to the walk-in clinic to get my ears checked and hopefully get some medicine that would clear up what had to be fluid in my ears - since I read on the internet that it was likely the cause and that it would clear up soon. I'd say confusion was the best word for my current state when the MD who checked my ears told me they were clear. "Huh? - how is that possible?" How can they be clear? This began my rapid, rapid descent into what I'll call - the 'Dark Days.'

The next few days and weeks I spent hours upon hours each day on the internet truly obsessing over tinnitus. I didn't care about work, my family, or anything else happening in my life. I only cared about what was causing my tinnitus and how to make it stop. I'm a type A personality with a history of chronic anxiety so this type of behavior was already in my nature. I read every article I could on causes, convinced if I could figure out the cause I could figure out the solution. I also spent hours upon hours in a true state of panic worrying, obsessing, thinking that my life as I knew it would be over, that there was no way I could live with this for the rest of my life, that there was no way possible this could actually be permanent, and loathed in self-pity cursing the fact that this could actually happen to me.

For the first few weeks I got very little sleep. I would lay awake most of the night listening to my brain hiss, while also seeking drugs from my MD that would possibly help me sleep and/or 'cure' me. My thought process was that I HAD to be taking some sort of medication to convince myself I was trying to do something to "fight" this condition - after all, this felt like a foreign invader that I had no choice but to obsessively fight like an immune system fights a disease. Any and every article I read, or even success story I read from this forum, where a possible remedy was listed - I tried it. From March through May I tried different vitamin cocktails, Ginkgo biloba, magnesium supplements, NAC, Apple Cider Vinegar, and even prescription drugs like Amitriptyline and Nortriptyline, praying that something would finally kill this invading sound and I could go on living my life again. Looking back, I guess maybe some of this might have had some affect on dampening the sound but I think ultimately the positive effects were more psychological than anything because I knew I was actively 'fighting' it with something.

Now, I can't say there was an epiphany at any certain point in time, nor can I say some sort of change happened over night, because it didn't. There were a few things that I do reminder thinking of very often that helped me move to brighter days faster - and here are a couple.

1. Tinnitus doesn't hurt you. What hurts you is your reaction to it and your body's physical response to it. When I felt myself sinking into a dark hole I would repeat these words to myself and attempt to keep myself positive by changing my state of mind. The brain is such a powerful thing and distracting it was often times the best method of coping.

2. The fear of permanence. I think what scared me the most is when I'd read that there is no "cure" or that tinnitus can be permanent. I panicked at the thought and fell into a depressive hole the more I thought about it. I changed this by actively changing the fear of permanence into the prospect of hope. Hope that there would be a cure, hope that one day it would just go away, hope my life would go back to the way it was before and optimism that it would, because it can - and there are many stories that it does!

The most profound mechanism I inadvertently learned though this all was powering my life through optimism instead allowing it to be driven by fear. As months past, I found that I started not to obsess about my tinnitus as much. My thoughts were less around "What is this thing/event/place I'm about to experience going to be like with my tinnitus?" Will my tinnitus ruin this experience? to gradually moving to "What is this experience going to be like, what am I going to learn/see/do?" period.

I started spending less time researching tinnitus on the internet. I started again taking more interest in the things my kids and wife were doing. I found that I felt the best after a great workout or run, so I started running more. As a matter of fact, in October of 2019 I ran my first marathon, in January I ran my second marathon, and in March of 2020 on the anniversary of my fateful first night with tinnitus - I ran my third. I'm a 40 year old 6'2" 210 lb guy so running marathons was something I never thought would be possible. It worked for me because it was something new to obsess about, something healthy, something different.

How many miles should I run this week, what stretching should I do, what's the best fuel I should eat, how much water should I drink, what are the best shoes to wear, what music should I listen to when I run, what races should I run leading up to the marathons? These were the questions going through my head all Summer and Fall, replacing questions like what medications should I take? Why am I still hearing this noise? Is it permanent? Why me?

Over time my perception of tinnitus changed until I suddenly realized, I don't really care that much about it any more. Can I hear it? - yep, when I think about it. Does it cause panic? - nope. Does it keep me up at night? - nope. Do I care any more if it's permanent? - nope. Would I take medications that could cause other harm to my body if I knew it would stop it? - nope. Do I still have optimism that one day there will be a simple cure or that I'll wake up one day and it's gone? - absolutely! Does it really matter though? - honestly, nope.

So - if you are reading this and you are within your first few days, weeks, even months of experiencing tinnitus and you're asking yourself some of the same questions above, and are struggling for 'normalcy' - please know that I sympathize with you and anyone who has struggled with this condition, no matter how long you've had it. You may be at stage where 'accepting' this new you is way too hard to fathom and I get it, it was for me too, so I'm not telling you that you have to accept it today either. What I can tell you though is what worked for me with the hope that this works for even just one person today, tomorrow, or in the future.

1. If you're having trouble sleeping, the Tinnitus Calmer app by Beltone was a godsend for me. I had this playing on my phone all night right on my nightstand for probably a good 6+ weeks after onset of tinnitus. You can mix and match sounds to one that fits your tinnitus tone too. My favorite was Violet Noise plus Dishwasher. Good stuff! I also liked to listen to the Peaceful Morning sounds during the day as a distraction.

2. "The Happiness in your Life is in Direct Proportion to the Character of your Thoughts" - what this means to me is, if you feel down, try to turn to hope. Hope that a cure comes tomorrow - it really could! Hope that you could wake up tomorrow and it will be gone - it's happened before! - you could be next! Hope that with time and other life experiences that tinnitus won't be the 'new' thing to obsess about and will become less of a factor in your life - it will!

3. Find a new obsession. For me, it was running. Running was a great way for me to decompress from the stress of the day at work or any stress for that matter. There was so much to learn about something as simple as running that I could research and obsess about that I'm sure you can find something that fits you perfectly and is potentially way more mind-consuming and complex to occupy that great brain of yours.

4. Know there's someone in your corner. You're not alone in this at all, there are millions of people just like you, experiencing what you're experiencing, have had experienced exactly what you're experiencing, and have come out of it better than they were before.

LL

 

@LivingLife,

Thank you for your very uplifting post. I certainly needed to read this tonight. You have no idea. I was diagnosed with tinnitus in 2015 after an AC/DC concert, and I’m one of the miracle people for whom it went away after about a year.

I was living a normal life without tinnitus for the almost the past 4 years. Then, suddenly, about three months ago it came back in my left ear - louder and different than before. Then about three weeks ago, I developed a bilateral high-pitched hiss/ whine that came out of nowhere. So not only am I now dealing with tinnitus again, I’m faced with dealing with two different tones in different ears. Try blending that that with sound! I am beyond saddened and frustrated. My biggest fear was always that it would come back or be worse and now that has happened.

I went to the ENT convinced I had fluid, ear wax or ETD. To my surprise, my ears were fine. I too have aural fullness and pain in my ear, particularly the left one. I had a hearing test and it showed mild hearing loss at one tone only in my left ear. I was devastated. Truthfully, it felt like a fatal diagnosis. Because for me, that test results made me lose all hope. When I was diagnosed the first time, I had no measurable hearing loss and tested completely normal. So I hoped that it would go away and it did. Now with some measurable hearing loss, although very minor, and still, according to two ENTs, considered to be “quite normal and very good hearing”, I’m sure it’s here to stay. And I’m now faced with figuring out how to navigate my life with this new normal. I started CBT, had a consult with the infamous Dr Stephen Nagler ( worth every penny and what a lovely man) and I do use some masking in order to cope with work and sleep, but the high pitch tone often presents itself over any masking. I try to tell myself that it is just a noise (s) but those negative thoughts keep coming back, and I am sick with the thought that this is permanent and this is my future and I have no control. After my initial diagnosis, I had custom earplugs made and I did everything right. I protected my ears when I should, I didn’t overprotect when I shouldn’t and I followed all of the instructions per my ENT and audiologist. Yet here are I am with some mild hearing loss. How did that happen when I did everything right? You can imagine the devastation. The limbic region of my brain is alight in a flood of emotions including fear, panic and profound anxiety, most of which sits squarely in the pit of my stomach.

Like you, I’m a type A personality, prone to anxiety and will always find something to obsess about. I sure wish I wasn’t obsessing about this. I would much rather go back to the time before this new onset where I was obsessing about aging, the lines on my face and the extra pounds on my hips. Now I am obsessed about the upcoming Confirmation for a friend’s son and how quiet it is going to be at certain times during the Mass and wondering how I will manage. I’m trying to stay off of Internet and stop reading about tinnitus and all the conflicting and misinformation that abounds. It doesn’t help. I remember that from the last time.

Today, you have given me hope that I can live with this and get to a place that I can enjoy life again. Thank you for that. I used to be a huge runner actually, but I blew out both Achilles tendons so there will be no future in that for me. I will have to look into another healthy habit on which to focus my attention.

Wishing you all the best.

 

Only a tinnitus sufferer would love a sound like “violet noise plus dishwasher” lol. Thank you for the positive story.

 

This comment gave me a proper laugh. Thanks!

And thanks OP for the positive post. I'm on a similar timeline to you. Not ready to write my success story yet - I think I take longer to adapt to things than some people do - but I do think I'm on my way. You're completely right about distraction and obsessing over something new. To start with it does feel like you're constantly running away from your tinnitus, but eventually it starts to become normal and nice.

 

I was saying exactly this a few months ago. Today I am probably more stressed about my weight, my lack of boyfriend, and my work, than about tinnitus. There will always be something to stress about! But knowing that tinnitus is no longer my number one problem feels like a victory. You will get there too. xxx

 

@LivingLife

Thank you so much for sharing your story. It was very uplifting and had many helpful points and suggestions. It
Your post should be mandatory reading for "Newbies".

 

@Hotspur2931 I've been meaning to ask you how things are going with the Back to Silence method?

 

Hi Shera!

Basically I decided that saying "I hear... I feel..." was never going to work until I achieved Step 1: Stop thinking about or listening for your tinnitus.

Terry is very clear that Step 1 is the most important and the hardest, but I think a lot of us got hung up on the other steps without achieving Step 1.

So yeah long story short I stopped trying to do the other steps and just focused on Step 1 and it's made a big difference to me.

I do avoid silent rooms, which helps, but I just make sure to catch myself thinking about it and direct my attention to something else. To start with I would flick myself in the face with my fingers every time I caught myself thinking about it. That actually really helped to bring my attention back into the moment.

I'm nowhere near habituated yet but my anxiety is greatly decreased and I'm starting to have really good/happy days.

I think the principles of the method are absolutely brilliant. It's all about attaching more importance to your personal well-being and feelings, and absolutely no importance to the noise itself. I'm going about it in a slightly different way to what Terry suggests, but nonetheless I really feel I'm making progress.

I really committed to this approach in late February and since then I have not had a single "dark day" (crying, feeling like I can't go on), nor a single instance of uncontrollable anxiety or fear.

I still have anxious days and times when I'm a bit down, but I often notice that it's something other than tinnitus that's causing my mood.

Thanks for checking in, it's nice to be able to give a positive update for once! How are you doing?

 

I am so glad to hear this!

I like your thoughts on step one. I think I've used the other steps to calm myself and to get sleep back, but I have not achieved step 1. Though I got close a few times. I need to try that flicking technique.

I'm calmer and I feel better, but I'm not habituated by a long shot and I keep letting the depression get a hold. Though I have started to play catch up on my sleep and the innate "psycho-babble" I had has stopped so that's some peace.

Have to keep working on step 1.