Setbacks, Sounds and Healing from Hyperacusis

I’m starting a new thread because I’m further along in my hyperacusis/tinnitus journey (two years now), and I have learned a lot (as much about what I don’t know as what I know).

For backstory’s sake, I developed hyperacusis and tinnitus from acoustic trauma (gunshot, no protection) in April 2022. 20 dB hearing loss. Symptoms have included severe loudness hyperacusis (40ish dB LDLs at onset), reactive multi-tonal tinnitus, burning pain from sounds, stabby pain, delayed middle ear pain, ear pressure/fullness, sound distortions, ear thumping/cracking, TMJ, and probably more. During this time, I have healed to a degree that I’ve been able to go to parties, bars, dancing, and even taking cross-country vacations. I’ve also had multiple setbacks that have put me right back to square 1. Right now, I’m struggling to get back to a good place after having my sensitivity and pain return due to a fire alarm six months ago, but I am confident that eventually, I will (confidence varies day to day, but overall, I try to choose optimism).

Here is a very non-exhaustive list of some things I’ve learned about hyperacusis and tinnitus over those two years.

1) My hyperacusis and tinnitus are not your hyperacusis and tinnitus are not “insert name here”s hyperacusis and tinnitus. What may cause issues for one person could be beneficial for another. Advice that has massively improved your life could worsen someone else’s. A sound that gave someone else a setback won’t necessarily give you a setback. The most important part of this process, in my opinion, is getting to know your own body, what helps and what hurts, and trusting that knowledge. Of course, advice from other people can be valuable, especially for people who haven’t developed that self-knowledge yet. But it can also be tremendously detrimental, in my opinion. The same goes for your own self-knowledge. Sometimes, your body flips the script on you, and you have to redefine your boundaries/process for better or for worse. When I first got hyperacusis, I couldn’t tolerate digital sounds at all. Over time, that issue basically disappeared altogether. Now, I am somewhere in the middle. It’s a tremendously difficult puzzle, and I have nothing but empathy for anyone stuck trying to solve it.

2) Even the way my own body reacts to sounds isn’t always consistent. Case in point - the fire alarm. I had experienced that alarm going off multiple times over the year before the exposure, which resulted in my recent setback. Each time, I had the same ear pro. The first few times, there was not the slightest setback. Last time, six months of setbacks and counting. This can be applied to countless sounds I’ve experienced. Additionally, sometimes a high dB sound from one source can have very little impact, while a low dB screechy sound from my phone has set me back. Trying to predict hyperacusis can be like playing Russian roulette, and eventually, the exhaustion of trying to play that game can make it feel easier to cut as much sound as possible out altogether. At the same time, the ONLY way that I’ve been able to improve in the past and go on those vacations, hang out with friends, etc., was by slowly re-exposing my ears to sound again and shifting my focus away from hyperacusis and tinnitus and back to living my life. I have no ultimate conclusion about this, other than that saying “x sound or dB level = x symptom or progression of symptoms” can be almost impossible at times (aside from the obvious like gunshots or sirens or raves, which will inevitably make hyperacusis and tinnitus worse).

3) For me, pain has not always = bad. As a person with hyperacusis, one of my greatest anxieties has always been developing severe noxacusis. Having experienced burning and stabbing pains, facial nerve pain, TMJ stuff, and more, I know how daunting even minor pains can feel. And much of the advice surrounding noxacusis consists of NEVER pushing through pain. And for the most part I absolutely agree - if a sound is resulting directly in pain or significant discomfort to your ears, protect from it. That being said, I’ve found that throughout my recovery from multiple setbacks/my initial trauma, the burning/day-to-day pains and pressure increases have actually tended to increase with increased safe dB exposures. In order to get through that stage into the pain-free stage (which I have reached multiple times), I’ve had to trust the heck out of my body through the pain and continue to believe in my healing process. NOTE: This is not me giving anyone advice on how to approach their hyperacusis (see item 1). This is me noting something that I’ve learned about myself.

4) The mind is incredibly incredibly important. Do I think you can just think of yourself better? Of course not. And it drives me insane when people in my life try to insinuate that I can. I wouldn’t still be dealing with this two years later if that was the case. It’s so much more complicated than that. That being said, I do know that a huge amount of my own suffering from this condition has been related more to fear over how x sound could affect me as opposed to my present reality. I also know that the periods where I have consistently utilized neuroplasticity practices like DNRS or CBT or just put myself in situations that bring me joy have tended to yield the most progress.

5) The PTSD from improving so much just to be set back again and again by sounds completely out of your control is awful. It makes me feel insane sometimes. The peaks of suffering have been so intensely horrifying; how could those setbacks (and trying to figure out how to avoid them) not haunt you every waking minute? Trying to separate myself from these traumas and start anew over and over has been the single hardest part of this process, and I think the thing that has made the last few months so hard for me to move past. Again, no solution here. It just sucks.

6) This condition can take so much from you. I have lost friends and family members over my inability to take part in their lives (in the way that they think I should). I have lost hobbies and jobs (I was a concert photographer, creative director for musicians, and a musician myself prior to this incident). Yet, life doesn’t have to end. During my time with hyperacusis, I’ve also moved in with a lovely partner who is very supportive and accommodating. I have gotten promotions in my remote job. I self-published a book on photography and graphic design. I have two beautiful cats who love to sit on my lap. I’ve caught endless amounts of shiny Pokemon (lol). Life has changed drastically and I mourn that every day. But I also try to stay occupied and find gratitude for the good I still have, as hard as it can be sometimes.

Last week, I turned 27, and I never thought years of my 20s would be spent trying to recover from a condition like this. I often feel lonely and wish more people understood what I was going through, or wish I had friends around my age with something similar so I wouldn’t have to feel so insane trying to explain it to the friends and family that have stuck around. I think many people in my life just assume I’m an agoraphobe at this point, which, honestly, whatever. I pass, wasting my energy on what anyone else thinks of me. Every day is a new day. I’m just trying to take it one at a time.

Wishing the best for all of you.

 

What an inspirational, brave, and honest post; you have a maturity way beyond your years and are one brave guy. Your post gave me hope and inspiration in equal measures, and I commend the insane amount of resilience you have shown and continue to show in the face of such adversity. I hope you can continue to find the motivation to keep pressing on, and I hope you stick around Tinnitus Talk as your wisdom and resilience are needed to help and support others.

 

Thanks for the well-thought-out post. You are not alone. If you're from Austin, TX (a guess from your username), I was just across town from you, struggling with this condition until I moved last year. I'm 30 years old, a former musician and concertgoer. It was a DJ in a nightclub that gifted me with hyperacusis & tinnitus in my right ear several years after I gave up drumming. Maybe I gifted it to myself, and the DJ just delivered the present, but I try not to harbor any resentment towards that stranger. If it wasn't them, it was going to be someone or something else. The condition is incredibly isolating. Go to the office 3x per week so as to not get fired, and come home. Avoid other humans as best I can in the process. Eat lunch alone. This is not how I was, I am fundamentally changed as a result of these conditions.

As I sat on a Zoom call for a clinical trial support group last night here in the US, I couldn't help but realize how much younger I was than everyone else on the call by a good 25 years at least. I felt sad and pictured what life would look like with this condition for another 40 years or so.

But as they talked about their backgrounds, I realized how well we all knew each other's isolation, age aside. We shared hobbies (many noise-intensive), hopes, and dreams. I'm sorry you're encountering this in your 20s, but we have so much opportunity still—to heal ourselves, support research, support hearing health initiatives that were so horribly neglected when I was growing up, and ultimately find a treatment in this noisy world.

These days, I don't get jazzed about going out and getting drunk anymore. It's articles like these that give me hope that someone, somewhere is working to understand the condition better and find treatments to give us that quality of life back that we greatly miss.

Until then, I'll control my anxiety as best I can; that's been with me long before my ear injury. I don't doubt that plays a huge part in my experience.

Stay well, my friend. Enjoy your cats and your partner.

 

New member here, but great post!

 

It's been a while since you posted an update. Are you still dealing with the setback from the fire alarm eight months ago?

 

Yes and no. On one hand, my symptoms have improved significantly. The ear fatigue has become much more manageable, I no longer experience daily pain, and although the tinnitus is still loud, it isn't unbearable. However, my sound tolerance and ability to withstand noise without setbacks remain very low. Over the months, I've struggled to avoid repeat setbacks from everyday sounds, leading me to rely more heavily on protection. Currently, I am wearing foam earplugs much more often than I would like.

I’m aware that overprotection may be contributing to a cycle of hypersensitivity, but after experiencing two severe setbacks in the past two years that greatly worsened my quality of life, I feel like I'm just doing what I can to prevent that from happening again. I hope that soon I’ll find the strength to fight back. I'm considering trying Clomipramine since I also have OCD, and it could potentially help with both conditions.

 

Thank you for the update. I'm so glad to hear that you are mostly recovered from that setback, but I'm sorry to hear that your ears are still sensitive on a day-to-day basis, long after the fire alarm incident. I hope that Clomipramine is a huge help to you if you decide to take it. If you have the time and inclination to provide another update in the near future, please do, either here or in the big discussion thread on Clomipramine.

Last week, I scheduled an appointment to talk with my doctor about Clomipramine because, just like many of us, I'm tired of taking three steps forward and two steps back. I won't be seeing her for a few weeks, so in the meantime, I'm living as cautiously as I can.

 

I also have OCD, and I'm going to try Clomipramine for the hyperacusis/noxacusis.

 

I would love to hear how it goes! Wishing you all the best. This condition and OCD are such a nasty combo.

 

Hey! What do you think has helped with healing this time? The same steps as you have tried previously?

 

It made my tinnitus worse. Louder, more tones, and musical ear syndrome.