Success Is a Matter of Perception

[Hazel]

It began over a year ago today. An uninvited guest that turned my world upside down. But I'm still standing, and in some ways doing better than before. This is my story of how I got better – may it help at least one person out there.

Having spent a fair bit of time on this forum, I feel the need to start with a few disclaimers:

• This is my personal story. I am not claiming that my experience applies to everyone, or even the majority. I am not portending to be some guru with all the answers.
• Yes, this is a habituation story. It's about how I got better, without the tinnitus disappearing or the volume reducing. It's still there all the time, it just no longer rules my life.
• I don't feel like including too many medical details here (e.g. tinnitus cause, tinnitus type, experiences with ENTs etc.) since I personally don't find that very relevant to my story. But if you are interested in this information, you may find it under a separate heading at the end of my post.

I didn't panic for the first few days … Yet. Full panic mode set in only after visiting my GP on day three and not getting clear answers. I began to realise this might not go away … Ever. It was too much to comprehend. I could hear the screeching every second of every minute of every hour of every day. Over almost all ambient sounds, over the TV, over music (at safe volume), conversation, etc. HOW CAN I EVER LEARN TO LIVE WITH THIS? Yet, even then, I knew that I could if I really, really had to; I was just wishing for it not to be true. I wished it would just go away.

The night became my enemy. I had never had a panic attack before but was regularly visited by them now; it felt like a herd of elephants stampeding on my chest. Sleep was an impossibility. I tried all kinds of masking sounds, but they only seemed to make my tinnitus worse, i.e. literally ramping up the sound of my tinnitus. Whatever resilience I had left quickly wore down, until there was hardly anything left of the old me.

One week in, I called in sick from my (rather demanding) full-time job and ended up staying on sick leave for 2.5 months. There were more GP visits, ENT and audiology visits. It turned out I have some hearing loss, of unexplained origin, in my right ear. An MRI was done to rule out some really scary things. And that was it. The end of the road, medically speaking. Having done my Googling, I was aware that there was no cure, and I didn't want to waste my time trying out dodgy treatments or endless medical consultations that would likely lead nowhere.

I decided at that moment that if the tinnitus would not go away, getting better was to be my one and only mission. I made two commitments to myself:

1. I would do whatever was required to get the anxiety out of my system – I felt I could probably learn to function with the tinnitus if I could just get rid of the perpetual anxiety.
2. I would start to take the best possible care of myself. I hated the tinnitus, but I also noticed that certain activities made it harder or easier to deal with. I needed to find out what worked for me.

These resolutions didn't make me confident as such that I could really have my life back, but at least it gave me some sense of control and a way forward. I think at that moment I also accepted that this sound probably wouldn't go away, and I would somehow have to find a way to still have a life, though it might not be my old life.

So, I spent the next few months finding out what would make me feel (at least marginally) better and applied those strategies religiously. Things that worked well for me were:

• Thai massage – I went twice per week, and it really helped against anxiety. I spent loads of money on this, but it was worth it.
• Yoga – I had already been doing yoga for years but now began doing it every day, whether at home or in class.
• Mindfulness meditation – After reading about how frequent meditation can actually change the structure of your brain* I enrolled in an 8-week course and kept up daily meditation for 3 months (I have since slipped).
• Walking. Lots and lots of walking.

NB: Just because these things worked for me, doesn't mean they work for everyone. Nonetheless, they are pretty harmless strategies, so I would recommend giving them at least a try if you're open to it.

Progress was slow. I would say the journey is still not over after a year, and it gets frustrating sometimes. I tried to be very kind towards myself and patient. This is, for many of us, extremely difficult.

About three months in, I was well enough to slowly venture back into the workforce although I never went back full-time (am working at 80% currently). I started picking up travelling, friends, hobbies etc.

One very important aspect in my recovery has been my volunteer work for Tinnitus Hub. It has been such an important outlet for me, and a great way to turn something bad into something good, by attempting to help others. @Markku has been instrumental in making this a very rewarding experience, and I hope to remain involved for a long time to come.

Since my recovery started, there have been numerous setbacks. Suddenly my sleep again takes a turn for the worse, or I get stressed and my tinnitus seems louder. I've come to see setbacks as a normal part of the process. I can handle them, as long as the overall trend is up. Even just last month, having had tinnitus for a year, it suddenly started bothering me a lot more again and I started listening for it again in a way I hadn't done in months. I could swear it became louder, but it was probably just me paying more attention to it.

By now, my tinnitus is something that I consciously notice perhaps only 10% of the time. When I do hear it, it still seems quite loud, but I know there are people with louder tinnitus, and I also know that the same loudness one year ago bothered me a whole lot more than it does now. When I get engaged in an activity, I just won't hear it anymore. I don't use masking – though I acknowledge it works well for many, it just never did for me. Bedtime is still hard, but partly that's also because I've always been bad at falling asleep; tinnitus just became an additional factor in that.

Looking back over the past year, I feel like I've been smashed into a million pieces, and then slowly, painstakingly put myself back together again. And the result is that I'm not the same person that I once was. My life is not the same. It's harder in some ways; I've had to make some significant adjustments. I am obviously protective of my ears, I don't go out as much as I used to, I feel much more acutely aware of how fragile our bodies are, and still suffer from anxiety occasionally.

But at the same time, I've gained so much. I'm more appreciative of the aspects of my life that are good. I'm grateful to have a body that is, for the most part, functional. I enjoy the good times a lot more. I take care of myself like never before. I've built up a level of resilience that makes me more confident in dealing with anything life throws my way.

And that's my story. If you're reading this and you're a new tinnitus sufferer, I would like to give you hope. But the truth is, I can't tell you what your journey will be like. I can only tell you that it's not likely to be quite as gruesome as you're perhaps imagining. For most of us, there is light at the end of the tunnel. And for those of you still struggling after many years, my heart goes out to you, may your burden become lighter soon.


Medical Details

• Tinnitus onset: October 2017
• Cause: one-sided hearing loss of about 20-30 dB across all frequencies, with a dip around 4 kHz
• Cause for one-sided hearing loss is unknown; an MRI did not show anything out of the ordinary
• Tinnitus mostly in hearing loss ear, occasionally in the other ear as well
• Tinnitus pitch: very high frequency whine, with an underlying lower frequency zoom
• Tinnitus volume: I would say moderate; I can hear it through/over most daily noises, e.g. when watching television, but not in the shower or a crowded restaurant
• Tinnitus variability: very little variation throughout the day, for which I count myself lucky; no significant increase or decrease since I first developed tinnitus a year ago
• Hyperacusis: no, thank god

* See for instance:
http://www.psyn-journal.com/article/S0925-4927(10)00288-X/abstract
https://www.frontiersin.org/articles/10.3389/fnhum.2012.00292/full
https://www.sciencedirect.com/science/article/pii/S0149763414000724

 

[Markku]

Dear Hazel,

Since you started supporting Tinnitus Talk as a volunteer you've made a great addition to the team. Beyond any doubt you've been instrumental to the success of our work and to the cause. You came to us wanting to turn your own struggles into something positive and I believe you have done just that. I hope you'll stay with us for many years to come. Thank you for your hard work, creativity and diligence!

Big hug,
Markku

 

[Lane]

But at the same time, I've gained so much. I'm more appreciative of the aspects of my life that are good. I'm grateful to have a body that is, for the most part, functional. I enjoy the good times a lot more. I take care of myself like never before. I've built up a level of resilience that makes me more confident in dealing with anything life throws my way.

Hi @Hazel

Thank you very much for your thoughtful and uplifting message(s). I believe gratitude is something important for all of us to consider (and practice) during trying times--if I may understate the devastation of tinnitus/hyperacusis. I think the more we can feel grateful for even the smallest things in our lives, the better we can cope with inevitable life challenges that come our way. -- Regarding your above description of things you've gained and became grateful for, you might find the following account interesting:

A friend of ours who's on the same spiritual path told us about her years' long difficult challenge of chronic neck stiffness and pain. One day she sort of cried out in desperation to her inner spiritual guide that if possible, could this burden be lifted from her. The reply she got was most interesting. It went something like, "Yes, we could lift this burden from you. However, doing so would deprive you of the things it was meant for you to learn. The choice is yours.

Since her spiritual growth is of primary importance to her, she decided to not have them intervene, and to let her neck issues play out as they're supposed to. She still tries to do everything she can to improve her condition, but she believes the process of figuring out life's challenges by our own resources is what's going to end up helping her the most in the end. -- This ties in with one of the precepts of our common spiritual path, which goes something like: "Everything is in its rightful place". Hard to accept some times as I go through my own struggles, but on a deeper level, it feels true.

Thank you again for sharing... -- All the Best!

 

[Jack Straw]

Thanks for sharing Hazel!

I like reading things like this, especially on days when my tinnitus is rather intrusive. Helps pick my mood up!

 

[Greg Sacramento]

Hi @Hazel

• Cause: one-sided hearing loss of about 20-30 dB across all frequencies, with a dip around 4 kH
• Tinnitus mostly in hearing loss ear, occasionally in the other ear as well
• Tinnitus pitch: very high frequency whine, with an underlying lower frequency zoom
• Tinnitus variability: very little variation throughout the day

From reading the above including mostly in one ear, I wonder if Lyme disease was considered.

https://www.rivm.nl/en/Documents_an...015/New_Lyme_disease_study_in_the_Netherlands

 

[Ed209]

@Hazel, words fail me for how remarkable of a human being you are. The rest of us can only look on in awe at all you have done for the cause, and in such a short space of time as well.

I truly believe that if the tinnitus community had a few more Hazels knocking about, we'd probably have a treatment by now. You are a flicker of light amongst a sea of darkness.

Glad to hear you're feeling better.

 

[PDodge]

Glad to hear you're doing better @Hazel, reading these threads make me feel better.

 

[Deamon22]

Congrats Hazel, and thank you for all the work you put in behind the scenes

 

[Hazel]

Dear Hazel,

Since you started supporting Tinnitus Talk as a volunteer you've made a great addition to the team. Beyond any doubt you've been instrumental to the success of our work and to the cause. You came to us wanting to turn your own struggles into something positive and I believe you have done just that. I hope you'll stay with us for many years to come. Thank you for your hard work, creativity and diligence!

Big hug,
Markku

Thank you! And I do plan to stick around for many more years to come. Looking forward to it in fact

Thank you very much for your thoughtful and uplifting message(s). I believe gratitude is something important for all of us to consider (and practice) during trying times--if I may understate the devastation of tinnitus/hyperacusis. I think the more we can feel grateful for even the smallest things in our lives, the better we can cope with inevitable life challenges that come our way.

Thanks for the kind words. I totally agree on the importance of gratitude. No matter how much life sucks sometimes ...

From reading the above including mostly in one ear, I wonder if Lyme disease was considered.

Thanks for the helpful suggestion. Yes, my ENT did mention this as a possibility, though he didn't consider it very likely, since I don't have any other associated neurological symptoms. And considering how difficult Lyme is to diagnose, I decided not to pursue this further.

@Hazel, words fail me for how remarkable of a human being you are. The rest of us can only look on in awe at all you have done for the cause, and in such a short space of time as well.

I truly believe that if the tinnitus community had a few more Hazels knocking about, we'd probably have a treatment by now. You are a flicker of light amongst a sea of darkness.

Glad to hear you're feeling better.

Ed, thank you so much. Your kindness and generosity never cease to amaze me.


@Jack Straw and @PDodge, glad to hear my story helped in some small way.

@Deamon22, thanks for the acknowledgement!

 

[Roy114]

I recognize alot of my own story in yours and I'm pretty sure we are in almost the same spot. I also have tinnitus that I (used to) hear all the time, every day over everything. It's still the exact same volume but I just don't notice it like I used to, because I chose to make the most of my life and eventually other things became more important. I still get setbacks where I'm suddenly more annoyed by it and it makes me sad, but I know those times are always temporary and are followed by me feeling more normal again.

I just notice one difference between us. I'm also a bad sleeper but tinnitus actually helps me sleep. Random sounds from outside my window used to keep me up for about an hour, but right now all I hear in the evening is my high pitched tinnitus, so I just focus on that and I'll fall asleep after about 30 min so I guess that's an improvement.

Glad to hear you're doing so much better now and that you're turning something negative into something positive. Keep up the good work!

 

[Rajin]

I take care of myself like never before. I've built up a level of resilience that makes me more confident in dealing with anything life throws my way.

Thank you, @Hazel. Surely I find this to be true.

 

[KaiT81]

By now, my tinnitus is something that I consciously notice perhaps only 10% of the time. When I do hear it, it still seems quite loud, but I know there are people with louder tinnitus, and I also know that the same loudness one year ago bothered me a whole lot more than it does now. When I get engaged in an activity, I just won't hear it anymore.

Thank you so much for your tinnitus journey @Hazel, even if it is not quite as positive as many in the success stories.

I developed tinnitus after an ear infection in February 2024. Now, I am in my sixth month with it. It is not very loud but very high-pitched and intrusive. It's rarely quieter, and I usually hear it all day long. I still can't tune it out and find the noise unpleasant and frightening.

So, that seems similar to your case in the beginning. It is not very loud but very intrusive; I can hear it over almost all ambient sounds. But your journey gives me hope that I will be able to tune it out for large amounts of the day someday, too, especially because you still don't seem to like the noise — it's not neutral for you — and you can still block it out for large parts of the day.

Often, I ask myself, is it "normal" that I am, after six months, still heavily struggling with anxiety and still often have mood swings, depressed feelings, anger, sleep problems, and being on sick leave (and still hear that sound on a constant basis)?

 

[Hazel]

Thank you so much for your tinnitus journey @Hazel, even if it is not quite as positive as many in the success stories.

I developed tinnitus after an ear infection in February 2024. Now, I am in my sixth month with it. It is not very loud but very high-pitched and intrusive. It's rarely quieter, and I usually hear it all day long. I still can't tune it out and find the noise unpleasant and frightening.

So, that seems similar to your case in the beginning. It is not very loud but very intrusive; I can hear it over almost all ambient sounds. But your journey gives me hope that I will be able to tune it out for large amounts of the day someday, too, especially because you still don't seem to like the noise — it's not neutral for you — and you can still block it out for large parts of the day.

Often, I ask myself, is it "normal" that I am, after six months, still heavily struggling with anxiety and still often have mood swings, depressed feelings, anger, sleep problems, and being on sick leave (and still hear that sound on a constant basis)?

Thanks for your kind words, and it's good to see that people are still reading my story years later

The good news is that it has been an upward trajectory for me. These days, my tinnitus only bothers me when I'm very tired or stressed. I am still closely involved in the forum and our research and education work through Tinnitus Hub (our 501c3 charity), doing my best to help others and drive research forward so that, hopefully, we can one day have a cure.

As you probably know, there is no "normal" with these things. I've heard many stories of people taking much longer than six months to habituate, so I would say it's certainly not abnormal, and there is no reason to lose hope. Best of luck to you!

 

[Mathilda]

@Hazel, there are probably more people still reading your story than you might think. I did the same and appreciated your surely honest, kind of positive, but not romanticized report.

I am beyond grateful for the effort you put into the tinnitus topic. I am having a very tough time currently, as the recent onset of my tinnitus hit me badly; the Tinnitus Talk Podcast and your valuable information about research keep me sane.

Thank you, @Hazel!

 

[KaiT81]

Thank you for your answer and for your work on Tinnitus Talk, @Hazel. I am very pleased that after you posted your habituation story, you have made further progress after a year of tinnitus and now only notice your tinnitus when you are very tired or stressed. That means you have achieved a far-reaching habituation. At the same time, that gives me further hope for myself (and other sufferers), as things can improve even after months and years. Time is probably a decisive factor, as is also said in many other success stories.

By the way, I'm like you in that I feel that my person and my life have fallen into a thousand pieces, and I now have to slowly and laboriously put them back together.

 

[Bob3382]

Thanks for your kind words, and it's good to see that people are still reading my story years later

The good news is that it has been an upward trajectory for me. These days, my tinnitus only bothers me when I'm very tired or stressed. I am still closely involved in the forum and our research and education work through Tinnitus Hub (our 501c3 charity), doing my best to help others and drive research forward so that, hopefully, we can one day have a cure.

As you probably know, there is no "normal" with these things. I've heard many stories of people taking much longer than six months to habituate, so I would say it's certainly not abnormal, and there is no reason to lose hope. Best of luck to you!

Positive stories like yours give me hope. I just read yours, and it encouraged me. I am doing similar things: exercising, walking, and working on reducing anxiety without medication. I am afraid of anti-anxiety medications. I try to avoid reading horror stories and focus on being positive, using some CBT methods. Instead of telling myself, "This thing is killing me," I say, "I am learning techniques and tricks to help reduce my anxiety, and I am hopeful about future devices that may help." And it helps. The tinnitus is not less, but the anxiety and sleeplessness, which were overwhelming at first, are now more manageable. In the beginning, I was on the verge of something drastic. But with prayer, meditation on Scripture, and reading success stories, I am now able to do many normal activities.

So, thank you, @Hazel.

 

[Furetto]

These days, my tinnitus only bothers me when I'm very tired or stressed.

So, can we say you have radically improved since your first success story in 2018? Are you practically back to normal?

 

[Hazel]

So, can we say you have radically improved since your first success story in 2018? Are you practically back to normal?

Basically, I would say my quality of life is back to normal (whatever normal means, haha). I would still say tinnitus makes my life more difficult at times, but it's definitely faded into the background and I don't even think of it on most days.

 

[Utdmad89]

Basically, I would say my quality of life is back to normal (whatever normal means, haha). I would still say tinnitus makes my life more difficult at times, but it's definitely faded into the background and I don't even think of it on most days.

I'd like to know why some get lucky like this and others only get worse and have different issues.

 

[Aussie Lea]

I'd like to know why some get lucky like this and others only get worse and have different issues.

It's the same as with many other health conditions known to humankind. Take for example MS (or any other neurological disease), some can cope with it very well for a long time, while it destroys others quickly.

Maybe some population group are more susceptible to auditory disorders being more severe, but it's very likely nothing you have control over.

Do I remember correctly that you have autism? That's maybe something that makes it much more difficult to deal with hearing problems and additional noise, etc.

 

[Utdmad89]

It's the same as with many other health conditions known to humankind. Take for example MS (or any other neurological disease), some can cope with it very well for a long time, while it destroys others quickly.

Maybe some population group are more susceptible to auditory disorders being more severe, but it's very likely nothing you have control over.

Do I remember correctly that you have autism? That's maybe something that makes it much more difficult to deal with hearing problems and additional noise, etc.

Yes, I'm autistic. After over a year, my tinnitus evolved into hyperacusis and then gradually into noxacusis, with Visual Snow Syndrome appearing along the way. Most people seem only to experience tinnitus. If the cause is damage to the auditory nerves, why doesn't everyone affected by tinnitus also experience hyperacusis and noxacusis? I guess that's what researchers are trying to find out.

I also want to clarify that I wasn't criticizing @Hazel in any way. I'm genuinely happy for those who recover; I wish I could be one of them.

 

[KaiT81]

By now, my tinnitus is something that I consciously notice perhaps only 10% of the time.

Do you remember when it started that you or your brain could tune out the noise for minutes, hours, and then (large) parts of the day, even though it was actually so loud that when you noticed it, you could hear it over a lot of everyday noise (e.g., when watching television)?

And a technical question: If I quote a post, does the author also receive an alert, similar to if I tag them?

 

[Hazel]

Do you remember when it started that you or your brain could tune out the noise for minutes, hours, and then (large) parts of the day, even though it was actually so loud that when you noticed it, you could hear it over a lot of everyday noise (e.g., when watching television)?

And a technical question: If I quote a post, does the author also receive an alert, similar to if I tag them?

Hey there! It's hard to recall exactly so many years later. I do clearly remember in the first few months not being able to watch a movie or listen to music without constantly hearing my tinnitus over everything.

I suppose the change was rather gradual. As in, the number of times during the day when I would consciously hear my tinnitus reduced slowly over time. It went with up and downs as well, which is fairly common from what I've heard too.

And yes, quoting someone does send them an alert

 

[KaiT81]

Hey there! It's hard to recall exactly so many years later. I do clearly remember in the first few months not being able to watch a movie or listen to music without constantly hearing my tinnitus over everything.

I suppose the change was rather gradual. As in, the number of times during the day when I would consciously hear my tinnitus reduced slowly over time. It went with up and downs as well, which is fairly common from what I've heard too.

And yes, quoting someone does send them an alert

Thank you for your words. It's really great that, despite your many activities, you take the time to answer questions and offer encouragement.

I hope I will habituate soon and/or feel better. What I can say, however, is that I have days (more and more often?) when the noise doesn't bother me as much, doesn't seem as intrusive, and is more easily overshadowed by ambient noise, so I don't hear it.