Sharing a Story of Hope — My Brain Got Used to Tinnitus

Markku · Feb 17, 2022

IntotheBlue03 said: ↑

I wonder how many folks on Tinnitus Talk have achieved habituation? Would be great if there was a poll or consensus/study on it somewhere (I realize this wouldn’t capture everyone). I know I’ve seen the stat toted by some of the TRT camps that only 2-3% of people don’t habituate (doubt this is the case and obviously they’re biased with an incentive) but I’ve always been curious about that on this forum.
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A couple of years ago we ran a survey targeting people (i.e. we emailed them) who hadn't visited Tinnitus Talk in two months or more. We received 2814 responses. There were many more questions than this, but the below is the part that might interest you. Of course, even this does not capture it perfectly. Should we have made the duration longer, 6 months, 12 months? And maybe a chunk of those who did feel better, and got better, didn't bother responding, skewing the results further. It's not really a topic many want to spend time on after it no longer rules your life. Anyhow... hope you start to feel better

Watasha · Feb 17, 2022

Chris135 said: ↑

This is a post a long time in the making. It's the story of my tinnitus - when it started, and where I am now.

This post will probably be more helpful for those who have recently been afflicted... and are really losing it. I'm not sure long-time sufferers will benefit as much, but that's not for me to know or to say for sure. Take from it whatever you will, and I hope it helps some of you, if even marginally.

I'm a mid-50s male. In January of 2017, I went to a concert. The music was loud, we sat near some massive speakers. I remember thinking this might not be good for my ears. But I didn't do a damn thing about it. Left the show with my ears ringing. Woke up the next day... same ringing. And the next day... and the next day... and the next day. I became worried. I did some internet research and found out that I likely had tinnitus. And I didn't like reading how difficult it can be to deal with.

A week after the onset of my tinnitus, I went to see an ENT. He said many cases will eventually recede on their own, or in other cases you might just get used to it. He also recommended I start on a three week course of high dose steroids to promote healing of the inner ear. I started the course of steroids, but had no improvement in the first few days. And that's when I started to crumble emotionally. I frantically searched tinnitus web sights, looking for some good news. And I did come across many success stories on various tinnitus sights. I tried to draw optimism from those stories, but I found myself focusing on the negative ones instead.

The next week (third week after onset) was brutal. Crying jags, depression, debilitating anxiety, and sort of comically, fits of donating money to various charities. I broke down to my wife and sisters when the noise of a family conversation was pounding my ears. I said, "I'm done. My life is over."

I went to see my GP about the anxiety. He told me steroids in high doses can frequently set off anxiety in people. He prescribed a limited number of low-dose Xanax. The Xanax was helpful. Over the course of a week I took as little of it as I could manage, which worked well. Just knowing that it was there if I needed it was good enough, but I was still wired way too tight due to the steroids. I talked to the ENT, and he instructed me to taper off them (important to taper!) four or five days earlier than the prescribed time. I just couldn't take the emotional high-wire, and he felt that the strong dose I had for those first 12 days or so may still be beneficial. As the steroids wore off my anxiety level diminished enough to function.

Afterwards I became highly sensitive to noise, looking to protect my ears lest the tinnitus get worse. Bought ear plugs, wore them everywhere. Watched the TV at such low levels that my wife turned on captioning because she couldn't hear the audio. I covered my ears when she ground coffee in the morning. I turned the phone ringer down to 1. I avoided movies, restaurants, people, and work as much as possible (I fortunately work for myself and have the flexibility to make my schedule to an extent.). I bought a white noise app for my phone and played it at night, as well as during the day when I worked on my computer. And I listened. Deeply, with intense focus. It's the first thing I did when I opened my eyes in the morning.Was the noise still there? Was it worse? Was it... different? Some days the noise was a high-pitched squeaking that sounds like a nearby boat prop when you're underwater. Other times the sound would be more of low pitched static.

After three months, I was convinced that the sound in my ears was not going away. I wasn't going to be one of the lucky ones. And then I accepted it. I had tinnitus. I didn't fight it anymore. I couldn't. I just didn't have the energy. It had worn me down. I told friends about what I was going through, and I was surprised that almost every one I talked to knew someone who had tinnitus, or they had it themselves. Knowing I wasn't the only one helped me deal. Slowly, I started going out socially again, albeit always with ear plugs at first. I started exercising again and working again full time. And then, despite my tinnitus hyper awareness, I started to have periods of time when I didn't think about it. Short periods. Like 5 or 10 minutes at first when I was distracted with work. Then those periods lengthened as time went by. I didn't choose to not think about my tinnitus. It just happened on its own.

Six months later... I still had the noises every day. One year anniversary... yep. Two years, yes. Three years, yes. And even now, to this day, over four years later, I still hear the noise if I purposefully pay attention to it. But miraculously, it no longer impacts me. I go through days and weeks without thinking about it. It doesn't mean I am not a little bit bothered by it from time to time. But my ankle and knee bother me from time to time, too. I'm mostly good. I am still slightly guarded about loud sounds around me. I cover my ears when an ambulance passes on the street. I wear earplugs when I mow the lawn or go see a movie, (try it- you won't believe how unnecessarily loud the sound is in a theatre) but that's just smart for anyone to do. You realize the world is a loud place once you become aware of the damage noise can do to your ears.

There was nothing I did therapeutically that I can point to that helped me get to the good place where I am today. Maybe the steroids had some impact, but that's hard to say. I think that my brain just got used to the tinnitus, which as I understand, happens in a fair number of cases. And I am unbelievably thankful for that. I know that the experience of long-term sufferers is far different from mine. I can share some of your pain, but know I cannot fully understand the challenge that you are up against. For others, especially those new to this club nobody signed up for, I hope my story provides you with some comfort for the future.
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Thanks for your story! About how loud is your tinnitus? Can you hear when outside on a walk? In the shower?

IntotheBlue03 · Feb 17, 2022

Wrfortiscue said: ↑

I hope you can habituate, because otherwise I can’t. I used to have daily panic attacks for years which screwed up my nervous system.
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Just curious do you feel better now that the brain zings/oscillation has calmed somewhat? I don’t know why but I had a break from that during a car ride today and now at home (I’ve removed myself from constant sounds like refrigerator etc which seems to make a huge difference) and it seems manageable without those 2 nightmare qualities. I’ve felt a sense of calm that I haven’t in 2+ months.

IntotheBlue03 · Feb 17, 2022

Markku said: ↑

A couple of years ago we ran a survey targeting people (i.e. we emailed them) who hadn't visited Tinnitus Talk in two months or more. We received 2814 responses. There were many more questions than this, but the below is the part that might interest you. Of course, even this does not capture it perfectly. Should we have made the duration longer, 6 months, 12 months? And maybe a chunk of those who did feel better, and got better, didn't bother responding, skewing the results further. It's not really a topic many want to spend time on after it no longer rules your life. Anyhow... hope you start to feel better

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Thank you @Markku. I appreciate that you folks can always steer us in the right direction, this is very helpful. Appreciate the kind wishes as well!

Wrfortiscue · Feb 18, 2022

IntotheBlue03 said: ↑

Just curious do you feel better now that the brain zings/oscillation has calmed somewhat? I don’t know why but I had a break from that during a car ride today and now at home (I’ve removed myself from constant sounds like refrigerator etc which seems to make a huge difference) and it seems manageable without those 2 nightmare qualities. I’ve felt a sense of calm that I haven’t in 2+ months.
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Awesome. Glad you found relief. I’m spiked past 4 days from my son laughing near my ears. Probably the 6th time this has happened lol. Otherwise I’m doing alright. Been keeping busy with work, gaming and just trying to live my life.

It rings, squeals, screeches, buzzes up and down, multi-tone reactive all day but slowly getting used to it.

Uklawyer · Feb 18, 2022

Markku said: ↑

A couple of years ago we ran a survey targeting people (i.e. we emailed them) who hadn't visited Tinnitus Talk in two months or more.
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@Markku - would the results not depend on how the participant was actually feeling at the time they left the forum? E.g. if they left feeling habituated, none of their answers would be positive (as in "much better"), right?

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Sharing a Story of Hope — My Brain Got Used to Tinnitus

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Sharing a Story of Hope — My Brain Got Used to Tinnitus

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Sharing My Story to Give Some Hope to Others

Sharing My Story: Tinnitus & Hyperacusis Still Present — My 3-Month Update

Sharing a Success Story of a Man I Found on YouTube

Sharing My Story Might Help Me, So Here Goes

Sharing a Curious Discovery — Singing "Om" with Ears Plugged Provides Tinnitus Relief

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