From 0 to Debilitating Tinnitus in 2 Months

[Ava Lugo]

Yes, I can listen to music, at low-mid levels of volume now. While my hyperacusis (loudness) is mild now, some music mostly heavy/death metal is still bothersome. The sound of an electric guitar makes me feel very uneasy. It sounds too screechy to me, so have been avoiding that. I haven't tried headphones or going to movie theaters yet. I'm not sure if I plan on going anytime soon. Still trying to figure out how my ears operate.

This is a good question, I mean it's possible that it could return if you were to go through another significant noise trauma. Not sure though. I'm only 1 year and 3 months into this, so I'm still learning as I go. But I don't care about it returning at the moment. I care about the NOW and right now, the palinacousis is not here and that's good enough for me.

You're probably gonna hear this a lot or already have heard it, but everyone's experience is different and very individual. Only you will know when you're feeling better and when it's time to test the waters.

Does your tinnitus not react to music? I know some people's tinnitus only react to certain sounds and I think I recall reading somewhere that you also got reactive tinnitus. Mine reacts to music so I have a hard time listening, so a lot of times I just don't listen to it unless I'm feeling really up to it and when the tinnitus isn't quite as bad. I can only listen to certain types of music or songs and not stuff with a lot of drums or my ear will beep to it and distort it.

 

[ZFire]

Does your tinnitus not react to music? I know some people's tinnitus only react to certain sounds and I think I recall reading somewhere that you also got reactive tinnitus. Mine reacts to music so I have a hard time listening, so a lot of times I just don't listen to it unless I'm feeling really up to it and when the tinnitus isn't quite as bad. I can only listen to certain types of music or songs and not stuff with a lot of drums or my ear will beep to it and distort it.

Yes, I get wild fluctuations in reactivity and music can get intrusive, to the point where I just stop listening to it for a while due to sadness. As you said, a lot of it depends on what kind of music it is and at what volume the music is being played at. If it's something like Mozart or Bach (with 1-2 instruments), then the reactivity will be kept at bay. But if it's music that has a lot of instruments and sounds happening all at once, the reactive tones can be heard over the music immediately. Honestly, every once in a while, there will be times where I can't even comprehend the music I'm listening to. It feels like my hearing is distorted and strange things are being heard. I can't make out the quality of the sounds I'm hearing.

I have the same type of reactivity that you do. The type that competes with external sounds, but goes down to a low and familiar baseline once the sound that triggers the reactivity is removed. But even then the "low and familiar" is still loud.

Even now as I write this, I'm next to my AC unit and the tinnitus overwhelms the noise of the AC. I get this strange warbling turkey sound over the AC noise and it's just like you said, "it rides on top of it". I have an idea of what you're going through, so my sympathies... Sometimes you just want find somewhere that's quiet because you're better off listening to a lower version of the tinnitus sound.

 

[Matchbox]

Does your tinnitus not react to music? I know some people's tinnitus only react to certain sounds and I think I recall reading somewhere that you also got reactive tinnitus. Mine reacts to music so I have a hard time listening, so a lot of times I just don't listen to it unless I'm feeling really up to it and when the tinnitus isn't quite as bad. I can only listen to certain types of music or songs and not stuff with a lot of drums or my ear will beep to it and distort it.

This happens to me with sounds around 1500 Hz, piano notes are especially bad for enciting reactive whailing directly inside my ear (not coming from the source, the tinnitus ramps up hard in a distorted, intermittent, rapidly pulsating chaotic tone, close to the piano note, always one tone... thinking nerve damage, it's also where my audiogram dips a lot, and recovers on steroids).

 

[MindOverMatter]

Yes, I get wild fluctuations in reactivity and music can get intrusive, to the point where I just stop listening to it for a while due to sadness. As you said, a lot of it depends on what kind of music it is and at what volume the music is being played at. If it's something like Mozart or Bach (with 1-2 instruments), then the reactivity will be kept at bay. But if it's music that has a lot of instruments and sounds happening all at once, the reactive tones can be heard over the music immediately. Honestly, every once in a while, there will be times where I can't even comprehend the music I'm listening to. It feels like my hearing is distorted and strange things are being heard. I can't make out the quality of the sounds I'm hearing.

I have the same type of reactivity that you do. The type that competes with external sounds, but goes down to a low and familiar baseline once the sound that triggers the reactivity is removed. But even then the "low and familiar" is still loud.

Even now as I write this, I'm next to my AC unit and the tinnitus overwhelms the noise of the AC. I get this strange warbling turkey sound over the AC noise and it's just like you said, "it rides on top of it". I have an idea of what you're going through, so my sympathies... Sometimes you just want find somewhere that's quiet because you're better off listening to a lower version of the tinnitus sound.

I understand you fully @ZFire. Like I had written it myself. It's all very familiar.

In my experience, classical music, and a lot of calmer instrumental music in general, is often more soothing than most other music.

...but, there is hope, reactiveness and fluctuating might not go completely, but it tends to get better over time. Minor setbacks are unavoidable though, but for every minor setback/spike (caused by normal sound levels), I believe strength and tolerance is built. Habituation can happen.

 

[Ava Lugo]

I understand you fully @ZFire. Like I had written it myself. It's all very familiar.

In my experience, classical music, and a lot of calmer instrumental music in general, is often more soothing than most other music.

...but, there is hope, reactiveness and fluctuating might not go completely, but it tends to get better over time. Minor setbacks are unavoidable though, but for every minor setback/spike (caused by normal sound levels), I believe strength and tolerance is built. Habituation can happen.

Habituation can actually happen with intrusive reactive tinnitus? Well I mean I hope so I suppose, or at least til medicine that can fix this problem comes out...

 

[MindOverMatter]

Habituation can actually happen with intrusive reactive tinnitus? Well I mean I hope so I suppose, or at least til medicine that can fix this problem comes out...

I certainly wouldn't sit and wait for medicine to "fix this". After acceptance and letting go of what you cannot control, habituation can happen, even with reactive tinnitus. It just takes a lot of time, in my opinion. Even just to get to the the acceptance step.

 

[ZFire]

I understand you fully @ZFire. Like I had written it myself. It's all very familiar.

In my experience, classical music, and a lot of calmer instrumental music in general, is often more soothing than most other music.

...but, there is hope, reactiveness and fluctuating might not go completely, but it tends to get better over time. Minor setbacks are unavoidable though, but for every minor setback/spike (caused by normal sound levels), I believe strength and tolerance is built. Habituation can happen.

Thanks @MindOverMatter. I was able to reclaim most of my tolerance back which I feel is more important than anything else. So I'm really grateful in that regard.

I've come to realize that I'm actually okay living with severe tinnitus. The loudness doesn't bother me as much anymore. I think it probably has something to do with my upbringing. The jarring reactivity does not give me much anxiety or stress most of time either, but deep down I know I'm still sad, discouraged, and just exhausted over it. I just know how to hide it well in front of others.

I hope one day to be like you. Harness the power of the mind to its maximum potential. That's all I want.

 

[MindOverMatter]

I've come to realize that I'm actually okay living with severe tinnitus. The loudness doesn't bother me as much anymore. I think it probably has something to do with my upbringing. The jarring reactivity does not give me much anxiety or stress most of time either, but deep down I know I'm still sad, discouraged, and just exhausted over it. I just know how to hide it well in front of others.

I hear you and I feel you 100% @ZFire... and I believe you've come a long way already. I guess most of us have some sort of grief in regards to severe tinnitus and hyperacusis, and it is not an on/off switch to choose one thought over another - to choose hope and gratitude over sadness and hopelessness.

That feeling of being overwhelmed by a cacophony can really beat us down.

...but we have no other choice really than looking forward. The past, and whatever caused our situations, can't be changed - we need to focus on the now and tomorrow. One day at a time.

Every cloud has a silver lining...

 

[Ava Lugo]

Thanks @MindOverMatter. I was able to reclaim most of my tolerance back which I feel is more important than anything else. So I'm really grateful in that regard.

I've come to realize that I'm actually okay living with severe tinnitus. The loudness doesn't bother me as much anymore. I think it probably has something to do with my upbringing. The jarring reactivity does not give me much anxiety or stress most of time either, but deep down I know I'm still sad, discouraged, and just exhausted over it. I just know how to hide it well in front of others.

I hope one day to be like you. Harness the power of the mind to its maximum potential. That's all I want.

I just wanted to say, I get very tired of listening around my tinnitus. My tinnitus is in my face an awful a lot, like I can't ignore it most of the times when I'm in noisy places.

When I say "ignore it," I mean my brain is unable to tune it out since it's so intrusive and it's just unstable I guess. When I'm at home and I got my sound therapy YouTube video on for tinnitus relief and I'm really engaged in a game or something, I may not be aware of it for 5 minutes, off and on, but I have to really be interested in what I'm doing for that to happen.

I hear the tinnitus constantly every waking second otherwise unless I'm drunk or sleeping. I hear it 85 to 90 percent of the day on a "good" day when I have less loud reactive tinnitus tones. I mean when I hear it constantly, I still try to get things done and grocery shop at the store or do what I have to do but it interferes with my ability to hear, kind of like I'll hear someone's voice and I'll hear the tinnitus compete with their voice but I try not to focus on it but it's hard. If I'm really into what they are saying, then yea, I still hear it react but it's not quite as loud but if I'm not really interested in what they are saying, then I can get distracted by the tinnitus during conversations.

What do you mean when you say you got most of your tolerance back, if you still have reactive tinnitus?

 

[ZFire]

What do you mean when you say you got most of your tolerance back, if you still have reactive tinnitus?

I'm referring to hyperacusis (loudness), specifically sound sensitivity. At my worst, I couldn't tolerate any sounds without it giving me ear discomfort. I couldn't even talk normally, had to whisper. The sound sensitivity has lessened greatly since. I classify myself in the mild categories now.

 

[Ava Lugo]

I'm referring to hyperacusis (loudness), specifically sound sensitivity. At my worst, I couldn't tolerate any sounds without it giving me ear discomfort. I couldn't even talk normally, had to whisper. The sound sensitivity has lessened greatly since. I classify myself in the mild categories now.

Oh that makes sense, but how do watch TV with sound on with reactive tinnitus? I find it's hard to concentrate with the tinnitus competing with voices on TV so I honestly watch on mute with subtitles most times.

How do you watch TV with sound on with bad tinnitus? I'm just curious how others with severe in-your-face tinnitus manage to do it.

 

[ZFire]

Oh that makes sense, but how do watch TV with sound on with reactive tinnitus? I find it's hard to concentrate with the tinnitus competing with voices on TV so I honestly watch on mute with subtitles most times.

How do you watch TV with sound on with bad tinnitus? I'm just curious how others with severe in-your-face tinnitus manage to do it.

I power through or will through it most times now honestly. If it's really bothering me, I keep the volume barely audible or mute or move on to some other quiet activity like reading.

 

[Ava Lugo]

I hear you and I feel you 100% @ZFire... and I believe you've come a long way already. I guess most of us have some sort of grief in regards to severe tinnitus and hyperacusis, and it is not an on/off switch to choose one thought over another - to choose hope and gratitude over sadness and hopelessness.

That feeling of being overwhelmed by a cacophony can really beat us down.

...but we have no other choice really than looking forward. The past, and whatever caused our situations, can't be changed - we need to focus on the now and tomorrow. One day at a time.

Every cloud has a silver lining...

Do you ever feel like your reactive tinnitus interferes with your hearing, kind of? For example, you hear someone say "hey!" You hear their voice but you also hear the tinnitus competing with it? You know, that sort of thing. I still experience this almost 3 years in and I've tried sound therapy and silence but it still reacts to TV, voices, fans, water and cars. It's in-my-face intrusive most of the time

 

[MindOverMatter]

Do you ever feel like your reactive tinnitus interferes with your hearing, kind of? For example, you hear someone say "hey!" You hear their voice but you also hear the tinnitus competing with it? You know, that sort of thing. I still experience this almost 3 years in and I've tried sound therapy and silence but it still reacts to TV, voices, fans, water and cars. It's in-my-face intrusive most of the time

My tinnitus reacts to a lot of noises, still, BUT my negative response pattern towards it has become less over time. Acceptance is key. This gives me more and more better days.

But I know what you mean regarding tinnitus sort of competing with external sounds/voices. It takes a lot of time to come to terms with it, AND, in my experience, it does get better.

 

[Ava Lugo]

I power through or will through it most times now honestly. If it's really bothering me, I keep the volume barely audible or mute or move on to some other quiet activity like reading.

Do you have reactive tinnitus everyday? How often do you have reactive tinnitus? I have it every day and I'm asking you this because I know some people on here have reactive tinnitus that come and go and I'm thinking how nice it would be to have a day where it doesn't react to noises at all.

 

[ZFire]

Do you have reactive tinnitus everyday?

Yeah, more or less. Some days less noticeable than others, but it's always there. Mornings seem to be the best for me (reactivity is more weaker).

 

[Ava Lugo]

Yeah, more or less. Some days less noticeable than others, but it's always there. Mornings seem to be the best for me (reactivity is more weaker).

Yeah I prefer mornings better too.

 

[NiMo]

I could play guitar with no distortion... so the benzos must be working still.

If you don't already play bass guitar, you might want to consider purchasing one. Their frequencies aren't as piercing as six string guitars. I play both. I played six-string for three decades and purchased a bass less than a year ago. I found out that my bass style is completely different than my guitar style and it encouraged me to take up drumming and recording.

 

[in_LA]

Just to keep a record.

I had to go on steroids, Dexamethasone, to avoid the problems with Prednisone potentially screwing up fluid balance.

I had a hearing loss in left ear that was sudden and quite terrifying and did not get better after 24 hours. Could have been from a long car ride, or lack of fluids... it's hard to say. It didn't come back on its own.

Missing treble sounds and anything that was supposed to be 6 kHz made a screech in my ear as if a mosquito were there instead, which is hard with everyday sounds doing that constantly.

I'm totally off steroids. They were slowly adding more noises. This could have been due to hippocampal neurons known to die with stress or from Prednisone affecting fluid levels. I used Dexamethasone mostly to avoid this extra variable but mixed some Prednisone to have a short time of high dosing (1/3 of total steroid was Prednisone). Dexamethasone worked on its own as my audiogram improved using just it initially within hours.

Last night was satanic tinnitus. I think possibly only those with hydrops or AIED might experience something similar. Every terrifying sound I ever had was amplified by 5. It was the worst tinnitus and hyperacusis night I've had in many months. I had been cutting back steroids previously with no such madness at 3am. in fact my left ear was ungodly quiet then.

There's only 3 possibilities that I had control of.

1. I took NAC the night of quiet and not last night.
2. I took Betahistine the night of quiet and not last night.
3. Dexamethasone has such a long half life that it doesn't matter that I began tapering the night before and only truly lower levels which spiked inflammatory damage kicked off last night.

My audiogram had gained in my right and left ears. My right ear gain has disappeared as of this morning. It was surprising to hear 1500 Hz so clearly a couple days ago. A difference of 20 dB in my right ear, better than my left, to say the least I was very surprised. My left ear which initially lost hearing at 6 kHz down to 25 dB has all come back and remains, so off Dexamethasone for now. Goes to show whatever is going on is certainly not always permanent.

Hearing is duller on right but I care way more about the fucking noises and distortions.
I hear shimmering, rapidly fluctuating in volume tinnitus at around 4-6 kHz. I'd imagine bilaterally, along with grunts groans, distortions, and seashell noises in both ears yet again in the morning (which makes work very very hard).

Any ideas for blood tests that I could convince someone to run where bilateral tinnitus increases so drastically on steroid reduction would be helpful to suggest.

I hope this is temporary and that I don't have nightmare tinnitus/distortions again tonight. Not eating or sleeping and profusely sweating whilst having your life in shambles around you isn't great for suicidal thoughts.

Sorry.

Wait, audiograms can change? Like if you have a notch on your left ear, it can sometimes come back if the ear heals? Or has this just been your experience?

 

[Matchbox]

Wait, audiograms can change? Like if you have a notch on your left ear, it can sometimes come back if the ear heals? Or has this just been your experience?

That notch needs diagnosing as to "why". If it's the main auditory nerve I would fathom it can absolutely recover. Hair cells, not so much.

Whenever I have gone on steroids or, oddly, certain blood pressure increasing meds, I will absolutely have changes in the audiogram.

There is a persistent notch which sounds like nerve damage when I hear it (pitch and tone is chaotic at 1500 Hz for the right ear only) and this all but is obliterated on steroids. If it were hair cell damage, I would expect nothing to change, my otoacoustic emissions are damn near perfect too supporting the nerve damage case. Steroids will also cause most sounds to become hissing and distortions decrease, but more seashell sounds abound.

This is specifically Dexamethasone, I'm avoiding Prednisone as it is a different steroid (mineraloid binding) which ends up worsening me permanently on withdrawals by adding new low frequency droning noises which do NOT recover. Dexamethasone makes me worse on withdrawals but only with volume much louder (5x volume), no new sounds, and this slowly recovers over 2 weeks anyway.

I recently got COVID-19 (unvaxxed). That is a whole other ear story I'm dealing with now. The interesting part is in the beginning, the "massive headache part", the tinnitus ringing was quite loud, however the "distortions" were basically GONE. Upon recovery the distortions are back with a vengeance.