15 Months of Tinnitus with No Improvement, Except for Occasional Good Days in a Row

[2049v]

@Yu.3, thanks. I really appreciate you sharing your experience. What you wrote caught my attention because my tinnitus also started after using headphones, so I feel our situations are somewhat similar. Mine began the day after I listened to music at a very high volume, and it was extremely intense. At times it felt unbearably bad—I remember crying for days until I had no tears left.

Maybe our cases are not identical, but there are clear similarities. I have a few questions, if you do not mind sharing. Were your spikes always after listening to very loud music, or did you also experience spikes while using headphones at normal volumes?

Is your tinnitus in both ears, or only one?

On your hearing test, at which frequencies did you have hearing loss?

If you can share those details, comparing our experiences might help identify similar triggers and possible follow-up steps. Thanks again, and I wish you well.

 

[alwaysmasking]

I am so sorry you have been going through all these months and years of a difficult spike. You never know, you may still see small improvements, and you may still habituate. With tinnitus, a lot of it is waiting, noticing gradual changes, and holding on to hope. I truly wish for things to improve for you. Please hang in there.

 

[Sonia554]

How are you doing, @Yu.3?

 

[Yu.3]

I am so sorry you have been going through all these months and years of a difficult spike. You never know, you may still see small improvements, and you may still habituate. With tinnitus, a lot of it is waiting, noticing gradual changes, and holding on to hope. I truly wish for things to improve for you. Please hang in there.

In a couple of weeks, it will be 18 months, a year and a half. So far, things are pretty much the same. There are good days, not-so-good days, and bad days. Usually, I'd say at least 15 out of 30 days each month are good or at least decent.

When I have bad days, I get a bit down. When I have good days, I feel more hopeful. I still haven't figured out whether having good days is actually a good sign or not. I'm afraid it might just be an illusion and that nothing will ever truly change.

That said, I'd gladly settle for only having the kind of good or decent days I get now. Even though they're not as good as they used to be, I'd still take them.

I can tell the difference between decent days and the not-so-good ones because, on the decent days, I don't feel the need to mask my tinnitus with other sounds.

All I can do is hope that sooner or later my brain will manage to properly tune out these sounds in my head, like it does on the good days.

The difference compared to before is that back then, if I had a spike in my tinnitus, it might last three to six weeks and then settle down and stay low. Now, it changes from day to day. Maybe it goes down for a day or two, then rises again, then drops once more, and so on.

So I live in a constant illusion that things are getting better, only to be disappointed again when the bad days come back.

The strange thing is that this month I had three good days when, at certain moments, I could barely hear the tinnitus even when I tried to focus on it. For the rest, it's a constant up and down that shifts from day to day.

 

[pants]

@Yu.3, your experience almost exactly matches mine. It started for me at the end of April 2024, so I'm also about 18 months into this. I have occasional "good days," but they're inevitably followed by bad ones. I still get ridiculously optimistic when I have a run of good days and fool myself into thinking they're permanent. I have to remind myself to be careful when that happens.

 

[alwaysmasking]

@Yu.3, your experience almost exactly matches mine. It started for me at the end of April 2024, so I'm also about 18 months into this. I have occasional "good days," but they're inevitably followed by bad ones. I still get ridiculously optimistic when I have a run of good days and fool myself into thinking they're permanent. I have to remind myself to be careful when that happens.

I feel this deeply. I just had a stretch of good days, felt human again, and now it's back to the usual routine. But those good days keep me going. It's bittersweet.

 

[Yu.3]

Let's say that when I have a good day, I start thinking the next one won't be as good. If I have a bad day, I never know when a good one will return.

Yesterday, for example, was actually a pretty good day. Today, not so much. As always, I notice that sleep really messes things up. Last night I woke up several times, and the first time I did, the tinnitus was quite loud.

Basically, when I'm having a good day, I never want to go to sleep. It's frustrating how, as soon as you fall asleep, your brain seems to reset itself, and you have no idea what's going to happen when you wake up.

 

[Yu.3]

Anyway, I basically have about 15 bad days a month. The other 15 range from good to decent. For now, that's the situation, as I haven't really seen an increase in the number of good or decent days. The fact that I do have good and decent days shows that, on those days, my brain is somehow better at tuning out the tinnitus, especially on the few good days when it's almost back to the level before the acoustic trauma. The problem is that, even after 18 months, the bad days still haven't started to decrease.

 

[Rachel Lou C]

Hi there,

I'm 12 months in. I was journaling a lot at the beginning and can see some improvement in the loudness of my tinnitus, although some days are still as difficult as when I first heard it.

Have you watched Julian Cowan Hill's videos on YouTube? He had severe tinnitus for over 20 years and is now mostly free of it. He's a UK-based tinnitus therapist, and I find his posts, even though they're older, make sense and give me hope. He also has an app called Quieten, and you can access part of it for free.

I've noticed that my tinnitus seems to reset to a similar level every morning, but it's affected by my mood, especially when I don't have much to focus on. You mentioned having days when you could hardly hear it — that happens to me too. For me, it's usually when I'm doing something new or spending time talking with friends. I'm hoping these moments will become more frequent for both of us.

Recovery takes time, and that's hard to accept, but take heart and keep going. We're all with you.