My 8-Year (Reactive) Tinnitus and Hyperacusis Journey Thus Far

[Hardwell]

Many of you here know me by now. However, my story appears very clustered and only updated via comments on other posts and minor profile updates that don't give the most significant insight.

I will try to keep it as brief as possible, but I'm open to any questions if you want more specifics.

I first experienced tinnitus back in October 2015. I would describe it as being able to hear it in a quiet room only, but it did bring a lot of anxiety for the first 6-12 months. Honestly, I seem to have a lot of amnesia trying to recall this period of tinnitus. I initially avoided bars, nightclubs, cinemas, sports grounds, or anything remotely loud. By 2-3 years, I was back to doing all this without hearing protection. I never had any permanent changes to tinnitus doing this, but I don't recommend it.

In hindsight, around 2020, I noticed that my tinnitus had crept up in volume, but it had been so gradual I hadn't noticed, and I wasn't phased by tinnitus at all to care about the increase. From at least 2017-2023, tinnitus was a complete nonissue to me.

Now, the word I hoped I'd never have to use when I came back to this site on April 2023... My 'worsening.'

April brought about the first ever significant change in my tinnitus, bringing with it hyperacusis for the first time. My once stable 1-2 tone tinnitus, which I only perceived in quiet environments, was now a multi-tonal reactive mess I heard over everything. It was/has been the worst period of my life, unfortunately.

The (loudness) hyperacusis improved significantly to the point it was gone as far as I can tell. I'm not sure about the timeline of this. I also experienced improvements in my reactiveness, where it would take a lot more to make the tinnitus react. My most considerable improvement, however, was my mental health; although I was aware of my tinnitus the majority of the time, I was not monitoring it for every little change like I was doing for the first 6-8 months. It was still unpredictable and variable, but I was at peace. It's only due to my 'setback' that I realize my progress.

So, what brings me back to the depths of disparity now? My hyperacusis has returned, my tinnitus is very reactive again, and I'm experiencing burning. There are a few potential triggers for this; I've had a lot of chainsawing around my home for the last week, but inside my house, it was only around 46 dB.

There's also been an illness going around my household, and my partner experienced burning in her arms and legs. I have also experienced this in the arms and legs, but primarily in the outer ear and side of the face. I am, of course, hoping this burning relates to the illness, as I'm still pretty much achey everywhere and have a stiff neck, etc. Unfortunately, I am terrified of it being noxacusis, hence my return.

Again, I am happy to dive into specifics, and I apologize if a lot of it seems vague. I tried to keep eight years of tinnitus relatively short.

 

[Jenny_S]

Hi @Hardwell.

Thank you for sharing.

Reading your story, I could see some similarities to my ear health. The onset of tinnitus from noise in 2016, an emotional toll but then habituating, setbacks that included nerve pain to sound (I have never noticed hyperacusis), seen good improvements and carrying on with life (always with hearing precaution, of course) and now a general worsening too. Hence, I am back here today. Your words of realizing just how much you had progressed before your current setback speak to me.

Wishing your partner and yourself a quick recovery from the illness and that the illness is the underlying reason that has brought you back here. I am no clinician, but with your immune system fighting off a particularly nasty illness, this may be the cause of a return to your sensitive ears, hopefully temporarily.

I am just in a distressed state. My sound threshold has decreased significantly as of yesterday, and I don't know what to do anymore. I am so cautious about sound that I can only link this to a meal out in a moderate-noise restaurant. I have such a supportive partner, and we have a city break abroad planned for next week, and I am just emotionally shattered.

Wishing us both a full recovery from these setbacks.

 

[HopeForAll96]

How did you live with reactive tinnitus until it improved? Were you over-protecting? Did you spend most of the time at home? How many tones did you get? Was it worsening over time until it got better? I'm sorry for all the questions, but I'm suffering with it too, and it got worse over the past year.

 

[gameover]

It is good to hear from you, @Hardwell.

I was quietly hoping you were doing better and better, and it has been so indeed until this. I hope this is temporary.

It is hard to make sense of this. How could it be the chainsawing at 46 dB? That makes no sense even for compromised ears. The illness theory makes much more sense.

Again, best wishes for you. Please keep us updated.

 

[Utdmad89]

@Hardwell, sorry to hear you have worsened. Does the burning linger? Do you have any other pain in your ears?

 

[Hardwell]

Hi @Hardwell.

Thank you for sharing.

Reading your story, I could see some similarities to my ear health. The onset of tinnitus from noise in 2016, an emotional toll but then habituating, setbacks that included nerve pain to sound (I have never noticed hyperacusis), seen good improvements and carrying on with life (always with hearing precaution, of course) and now a general worsening too. Hence, I am back here today. Your words of realizing just how much you had progressed before your current setback speak to me.

Wishing your partner and yourself a quick recovery from the illness and that the illness is the underlying reason that has brought you back here. I am no clinician, but with your immune system fighting off a particularly nasty illness, this may be the cause of a return to your sensitive ears, hopefully temporarily.

I am just in a distressed state. My sound threshold has decreased significantly as of yesterday, and I don't know what to do anymore. I am so cautious about sound that I can only link this to a meal out in a moderate-noise restaurant. I have such a supportive partner, and we have a city break abroad planned for next week, and I am just emotionally shattered.

Wishing us both a full recovery from these setbacks.

Hi @Jenny_S, thank you for your kind words.

I am thankful you also have a supportive partner; a lot of people don't have that luxury, unfortunately. It can of course be a burden at times when I feel guilty for holding her back.

You still have a little while before your trip; wait and see how you are closer to the time. Certainly don't push it if you think it will be detrimental.

All the best!

How did you live with reactive tinnitus until it improved? Were you over-protecting? Did you spend most of the time at home? How many tones did you get? Was it worsening over time until it got better? I'm sorry for all the questions, but I'm suffering with it too, and it got worse over the past year.

I lived with it very, very poorly for the first 4 months at least, in constant protection and housebound for the majority of the time. My anxiety was through the roof during this period.

Around the 5-6 month mark I started going on daily walks, socialising more with friends, albeit briefly. I took my hearing protection out for longer periods of time around the house. My mental health improved a lot during that time and so did the reactiveness.

t is good to hear from you, @Hardwell.

I was quietly hoping you were doing better and better, and it has been so indeed until this. I hope this is temporary.

It is hard to make sense of this. How could it be the chainsawing at 46 dB? That makes no sense even for compromised ears. The illness theory makes much more sense.

Again, best wishes for you. Please keep us updated.

It's a strange one for sure. Logically it seems odd if the noise was the culprit given the volume levels. I'm hoping it's the illness that has caused it and it is of course temporary. I wonder if this being a very stressful and anxious time for myself has also correlated to my current worsening. Praying it's not noxacusis as that unfortunately is a beast I have no fight for.

It is, however, good to hear from you, I really hope you get some progress and peace this year my friend.

@Hardwell, sorry to hear you have worsened. Does the burning linger? Do you have any other pain in your ears?

It certainly sucks! I'm not sure if to class it as lingering or not, maybe 2 minutes or so? It's not exactly painful, it's just very hot and worrying. Last night I had a shooting pain for two instances in my left ear. They lasted less than a second each.

I'm reluctant to say if any of it is reactive to noise or not at present, it's kind of doing its own thing and coming and going. Yesterday I drove to the hospital for a CT scan. I had no issues. On the drive back I was having a conversation with my partner and I felt the burning in my right side. That's the only time so far I've had a cause to the burning, but I wonder if that's related to the talking itself as opposed to the sound of it.

Of course I'm currently inflamed.

 

[AverageJoe12]

Hi @Hardwell.

Thank you for sharing.

Reading your story, I could see some similarities to my ear health. The onset of tinnitus from noise in 2016, an emotional toll but then habituating, setbacks that included nerve pain to sound (I have never noticed hyperacusis), seen good improvements and carrying on with life (always with hearing precaution, of course) and now a general worsening too. Hence, I am back here today. Your words of realizing just how much you had progressed before your current setback speak to me.

Wishing your partner and yourself a quick recovery from the illness and that the illness is the underlying reason that has brought you back here. I am no clinician, but with your immune system fighting off a particularly nasty illness, this may be the cause of a return to your sensitive ears, hopefully temporarily.

I am just in a distressed state. My sound threshold has decreased significantly as of yesterday, and I don't know what to do anymore. I am so cautious about sound that I can only link this to a meal out in a moderate-noise restaurant. I have such a supportive partner, and we have a city break abroad planned for next week, and I am just emotionally shattered.

Wishing us both a full recovery from these setbacks.

When you say you had setbacks that included nerve pain to sound but that you never noticed hyperacusis, how do you reconcile the two? If sound causes you pain, that's hyperacusis. Have you taken anything for the pain?

I hope the vacation abroad and time away from city living gives you some peace and relaxation.

 

[Jenny_S]

When you say you had setbacks that included nerve pain to sound but that you never noticed hyperacusis, how do you reconcile the two? If sound causes you pain, that's hyperacusis. Have you taken anything for the pain?

I hope the vacation abroad and time away from city living gives you some peace and relaxation.

Hi @AverageJoe12.

Like many of us on here, after seeking professional help that led to nowhere and more emotional upset, I just read online and self-diagnosed. I say I have noxacusis as I get the ear fullness/nerve pain in response to sound. I think hyperacusis means regular sounds appear louder and can cause discomfort (but not necessarily pain). I'll be honest: I have often thought I must have hyperacusis but have never felt regular sounds feeling uncomfortably loud.

I do not, as I read, not much helps with trigeminal nerve pain. I've been taking Paracetamol in small doses, try eating anti-inflammatory foods, and am currently just on day two of sick leave to have quiet and rest. Open to any suggestions, to be honest.

Thank you for the holiday well wishes, but at this moment, I am just unsure if I am in a mental state or if I'll cause further issues to my ears. But it would be a way of keeping my mind busy by taking in new sights.

 

[Jupiterman]

Did you go back to your work in construction @Hardwell?

 

[HighleyTall]

Hi @Jenny_S, thank you for your kind words.

On the drive back I was having a conversation with my partner and I felt the burning in my right side. That's the only time so far I've had a cause to the burning, but I wonder if that's related to the talking itself as opposed to the sound of it.

Of course I'm currently inflamed.

It's the sound; you have to raise your voice in the car.

If you wear earplugs in the car, you talk at a 'normal' level because you can't hear the background noise. Passengers will tell you they can't hear you.

 

[HighleyTall]

Did you go back to your work in construction @Hardwell?

I hope not.

 

[Hardwell]

Did you go back to your work in construction @Hardwell?

I actually returned to a very quiet construction site just before Christmas. I was only there for two days and didn't have any issues other than a small spike and falling down the stairs. However, I realised it just wasn't worth the risk and didn't go back.

I'd been on a pretty decent upward trend until this mishap here

 

[cjbhab]

I am sorry to hear about your troubles. I am hoping that the illness is the culprit. I think there is a good chance that is the case.

When I had COVID-19 in October/November, my ears turned into a reactive mess. After the illness went away it started to clear up and get better.

 

[Benjaminbb]

Hi @Jenny_S, thank you for your kind words.

I am thankful you also have a supportive partner; a lot of people don't have that luxury, unfortunately. It can of course be a burden at times when I feel guilty for holding her back.

You still have a little while before your trip; wait and see how you are closer to the time. Certainly don't push it if you think it will be detrimental.

All the best!

I lived with it very, very poorly for the first 4 months at least, in constant protection and housebound for the majority of the time. My anxiety was through the roof during this period.

Around the 5-6 month mark I started going on daily walks, socialising more with friends, albeit briefly. I took my hearing protection out for longer periods of time around the house. My mental health improved a lot during that time and so did the reactiveness.

It's a strange one for sure. Logically it seems odd if the noise was the culprit given the volume levels. I'm hoping it's the illness that has caused it and it is of course temporary. I wonder if this being a very stressful and anxious time for myself has also correlated to my current worsening. Praying it's not noxacusis as that unfortunately is a beast I have no fight for.

It is, however, good to hear from you, I really hope you get some progress and peace this year my friend.

It certainly sucks! I'm not sure if to class it as lingering or not, maybe 2 minutes or so? It's not exactly painful, it's just very hot and worrying. Last night I had a shooting pain for two instances in my left ear. They lasted less than a second each.

I'm reluctant to say if any of it is reactive to noise or not at present, it's kind of doing its own thing and coming and going. Yesterday I drove to the hospital for a CT scan. I had no issues. On the drive back I was having a conversation with my partner and I felt the burning in my right side. That's the only time so far I've had a cause to the burning, but I wonder if that's related to the talking itself as opposed to the sound of it.

Of course I'm currently inflamed.

If it means anything, I had pain hyperacusis (noxacusis) 15 years ago. It took around 18 months to go away back then. I continued to work in loud environments with earplugs 2-3 times a week during that period and since.

Try to remember to keep your perspective positive if things do head in that direction. Although it sucked having the pain, it's really about how your mind handles it.

As much as I understand what you're going through, it honestly sounds very minor and you may be worrying a bit too much this early on. I also had short-lived pain several times in those 15 years, mostly for other reasons, so don't jump to the worst case yet!

 

[Hardwell]

This is just a small update and reminder for myself, really.

The facial 'burning' certainly abated. I don't want to classify it as burning since it is primarily a hot sensation. It dissipated by initially affecting less of an area; it started with the side of the face, neck, shoulder, and arm occasionally. Within two weeks, it was just the side of the face, and then gradually changed to only a tingle.

Of course, it terrifies me that it was/is noxacusis. The 'burning' doesn't seem to happen often at all anymore, but I do get some slight shooting pains here and there on what feels more like the outer ear. It's hard for me to attribute this to noise, as it happens in silence. I've had some loud days and incidents, like a child screaming in my ear, that didn't trigger the shooting pains; I have certainly triggered them with jaw movements.

Noxacusis or no noxacusis, the biggest problem is the hole I'm back in. I have lost all hope of returning to a functioning life, and I'm in a bit of a depressive spiral again. Unfortunately, I've put myself back into the first months of my worsening, a lot of anxiety and have regressed to sitting at home 24/7 in silence and in earplugs.

I'm mainly writing this to remind myself that before this setback, I was quite content and optimistic for the future, with my tinnitus not being nearly as bothersome as it once was.

I really hope this passes and I can get back to the same place.

 

[Hardwell]

Another small update:

I was feeling much better and began to convince myself that the 'pain' symptoms weren't related to noise at all (rightly or wrongly).

This, in turn, improved my mental health considerably. Since this setback, I have avoided digital audio and been more careful than before. However, Sunday night, I was feeling much more confident that on Monday, I was going to restart the desensitization process that brought me relief the first time around.

"Man plans and God laughs," as they say. I slept awful and woke up with a new tone in my left ear. I can best describe it as an oscillating Sci-Fi tone you'd expect to accompany a UFO scene. Lol. I haven't had a new tone in a while, and if I do, they've subsided relatively quickly. Unfortunately, this one is still with me as I settle for bed, and my tinnitus is also very reactive again today for some odd reason.

What a pain in the arse this condition is; just when you get a foothold on things, it changes. But I guess there's nothing left to do but keep putting one foot in front of the other and seeing what happens.