I've Habituated, Not Surrendered — I No Longer Monitor My Tinnitus or Think About It

My 3 year anniversary is near and the tinnitus isn't gone (but it is extremely mild).

I've habituated. Tinnitus is just not a part of my day-to-day life anymore. I do still take care of my ears by avoiding loud sounds like the plague and I haven't worn headphones in years.

I went from monitoring my tinnitus every 2 minutes and thinking about it every 5 seconds to not thinking about it for MONTHS (that's right, not even at night) and I could count on one hand the times I've monitored it in the past year.

That being said, I haven't given up and definitely haven't conformed. I still hope that they'll eventually find a cure. In the mean time, I'll be busy not letting this thing rule my life while I wait for the cure alongside you guys <3

 

Extremely mild is great, @Ruth Gil - well done!

Can you tell us what it was like in the beginning and how it changed over time?

 

Thanks for coming back to share your story. It’s very encouraging to hear others doing well years later.

 

How did you get tinnitus? Was it severe? Bilateral? More info please.

 

It started as a moderately loud 'eeeeee' noise in one ear, then it moved to both. Over time, it constantly changed from ringing, to hissing, to screeching, then eventually (about 6 months after I initially noticed it) it changed to a quiet dial tone-like noise accompanied by an even quieter TV static noise, and has stayed that way ever since. I experienced a 2 day long spike recently after going to a gig without my ear protection but it's back to baseline now.

 

I've been dealing with sinus infections for years plus I do have a history of listening to loud music through earbuds, so it was probably one of those. The first day I noticed it, it was unilateral but soon affected the other ear, and has stayed bilateral ever since. It started pretty loud but became mild after a couple months.

 

@Ruth Gil, so even though you can describe it with confidence (dial tone and static), it sounds as if it is not even there (since you can go months without even thinking about it) - is that correct? Sounds great.

 

@Ruth Gil, currently dealing with a spike in my right ear.

Your story is almost identical as mine. 14 months ago it started in one ear after acoustic trauma and then within a week it switched to both ears. Eventually after a few months I was able to habituate and didn’t even think about it anymore. Then just out of nowhere on Monday I woke up with fullness in my right ear and a much louder tinnitus.

The fullness is gone but the ringing is still louder and I’m just trying to stay positive.

i hope you continue to feel great. Good luck.

 

Do you think something noise-related could've triggered this spike? Have you ever experienced a spike like this before?

 

Correct, I don't check it often. Before replying to you, I actually had to cover my ears and pay attention in order to confirm it has stayed that way because I hadn't checked in so long.

 

I count it a success if I can go for an hour without thinking of mine. Which is still pretty awesome compared to thinking about it every minute. Baby steps.

 

Congrats! I remember going through the same transition: every other minute, to an hour, to a couple of hours, to days, to weeks and so on. You will get there.

 

Update: I still notice my tinnitus every 5 or 10 minutes as it is generally either very reactive or quite loud. Right now I'm in a spike from two weeks ago when my daughter screamed a greeting out the car window at her friend walking past. It had been barely noticeable for the previous year. But it doesn't upset me like it used to, although it has worsened again. Yes it can be annoying and interfere with my enjoyment of music, but instead of being back at square one, I feel I understand it better and I know it will continue to come and go within the same broad parameters if I take the right precautions. Best of all, it doesn't disturb my sleep any more. I'm off my meds and I've learned to slow down and control my breathing, which is giving me my best sleep in years.

So I'd say the goal is not to stop noticing your tinnitus. It's to notice it, but not to feel defeated by it.

 

Congrats! @Ruth Gil, how bad was the tinnitus in the beginning compared to now?

 

So basically, even when you hear the tinnitus reacting to noise, it doesn’t really bother you at all? If so, then that’s great. I just don’t hear many comments about people being able to handle severe intrusive tinnitus very well. I know people can definitely habituate to mild or even moderate tinnitus but I usually don’t hear anything positive about living with severe intrusive tinnitus, I mean it’s really hard to live with and I understand why people get suicidal over it but yea sometimes seeing the suicide stories can be a real downer because I’m stuck living with this condition that some people end their lives over since there’s no real treatment right now.

I also got a question for you. Have you ever considered that the reason your tinnitus doesn’t bother you is because you had a year of it being quiet? If your tinnitus had remained severe and reactive instead o getting much quieter, do you think you would still be able to deal with the reactivity and not let it bother you?

My tinnitus has been very reactive for 3 years now. Sometimes it’s not as loud but it’s always been reactive since 3 years ago.

How did you get your tinnitus to become quiet for a year? I’m still trying to figure out why some people’s reactive tinnitus goes away, while others like myself end up with it permanently. I wonder if improvement in severity has to do with what the cause is. Not sure if it makes a difference but I believe I got mine from some kind of ear infection while recovering from a cold 3 years ago, and boom! My mild tinnitus at the time suddenly became very severe and reactive and has been that way ever since. It probably doesn’t help that I was born with severe hearing loss but I did read of a deaf girl who had really bad tinnitus but her reactivity went away so I guess it’s possible even for some deaf people.

 

Good question. I think if my tinnitus was constantly loud and only getting louder, that would be hard. But because I've experienced periods of quieter tinnitus too, I'm able to take the long view.

Mainly by giving up live music and headphone use, and by working from home. Basically being a hermit! I've slowly been starting to venture out and about again, and my baseline has increased. But it's a balancing act. I've been to a handful of small scale concerts and coped ok with those. I hope I'm going to find the right balance.

 

I live just fine/happily with ~60 dB (can't hear some speech over it) multi-tonal tinnitus that spikes permanently every couple of weeks. Only reason why I'm here is because the reactivity improved from spiking permanently from drinking water and chewing food to not spiking for weeks, even when my work requires me to speak all day.

 

Mine is similar to yours and it gets worse. Tell me your secret.

 

Just dealing with it I guess. If things go awry, I can always try XEN1101 or Susan Shore.

 

When is Dr. Shore's device supposed to come?

 

From my calculations - most likely within 1-1.5 years. Most likely spring 2024.

 

In the United States?

 

Yeah, obviously.