Eight Years of Tinnitus — My Life Is 100% Normal Now

Update:

I have had tinnitus for eight years now; I just thought I would drop a line.

Life is good, and it has returned to practically 100% normal almost 100% of the time. Of course, I still have tinnitus, although it is rarely terrible.

There was no magic bullet other than the sound therapy via hearing aids, of which I have gotten a second set, in addition to initial counseling with a good audiologist (who isn't afraid of tinnitus). I went with Sivantos (i.e., Siemens, but they have since split), although my originals still work, and I frankly prefer them even though they are considered inferior devices. I need them, I would say, maybe one or two weeks to total out of the year, usually to sleep with. Initially I wore them 24/7 for months going into years. The counseling and the hearing aids were the only things that helped. I tried everything else short of narcotics or illegal things, some of which are humorous in retrospect. I didn't try very many drugs because the side effects seemed to be too severe to contend with, but I didn't rule them out long-term. I went the more difficult route of TRT and time... and I guess I'm glad I did.

My hearing was measured at 30% loss when this came on, but eventually, I tested normal. I think the tinnitus sound (which was measured at 55 dB in both ears) just precluded me from hearing the beeps, so it's possible I never had any real hearing loss at all. It took one to three years of very slow progress to even out for me.

My stress level, alcohol consumption, and allergies all still contribute to the cacophony of frequencies that can happen, although mostly, it's still just the EEEEEEEEEE tinnitus type. Mine can now wildly modulate in loudness over the course of the day when, in the beginning, it was constant, only being reset (sometimes) after I slept. Daytime napping seems to make it worse somehow these days. It has rarely completely gone away, and frankly, as crazy as it sounds, it's somewhat freaky when it happens. Last year or the one before, when it went away for a minute or two, I kind of panicked, like - is my brain still on?! I guess I just consider it my "brain on" sound, haha. Occasionally it still sucks, but... you just kinda wait, and it passes.

Anyway, suffice it to say there is life even after loud crisis-level tinnitus; I can assure you of that. Hang in there and just let some time pass while you refocus. This will take a long time, I'm afraid. Just accept that it will and find things that interest you to pull your attention off of it as much as possible. Eventually you will not have to try.

P.S. Even though my hearing test is normal, no one can say that I don't have ear damage. I've been around jets on an aircraft carrier, race cars, guns... you name it. Sometimes with hearing protection, but sometimes not. One of my theories is that the ear may turn up the gain as you accumulate hearing damage, so that you can still hear, and maybe it just goes wonky and some people get tinnitus... who knows.

 

From now on, always with hearing protection!

 

How long were you doing the TRT for, and how long ago? I have read that it's not effective, so maybe time and natural healing while being careful with hearing protection would have resulted in the same.

Tinnitus Retraining Therapy Is Ineffective, Latest Study Finds

 

Well, maybe it would have, but it's certainly what I needed at the time eight years ago; I guess my therapy was about 1 to 2 years long tapering off. My audiologist is a dear friend to this day. I think that you're partially right in that habituation cannot be stopped, really, and that is a part of the training if I remember correctly. It's mostly just a matter of accepting you have the condition and getting over the initial shock, and helping your ability to refocus while all that is going on?

 

This makes no sense; what was the time between those tests? Tinnitus or not, but you either hear things or you don't, even audiogram test tones.

Your hearing might have actually recovered; it is rare but not unheard of. Your tinnitus could have stayed regardless.

 

It would have been when I was fitting my second set of hearing aids so probably 4 or 5 years after the initial onset. I can assure you I could not have heard those tones over my tinnitus. My tinnitus sounded (and still sounds) an awful lot like the high frequency tones in the first place and it was loud AF; the tone had to get to or above 55 dB at the frequency before I could hear it. That is how you measure the perceived loudness.

 

When your tinnitus is still loud, why does it no longer mask the audiogram test tones?

 

I don't take audiograms all the time, so I don't know. It's frankly not relevant because your perceived noise is what the issue is. I've had tinnitus a small amount my whole life, and it could be that eight years ago, it just got completely unmasked by my brain or something. Since then, I've been OK with my tinnitus, thinking it was low all day, and I still heard it over a waterfall or some other loud ambient thing. I've only had two audiograms in the last eight years. If you get hearing aids you have to get them tuned by an audiogram. Even with low or no hearing loss, the audiologist can give you some amplification to enrich the environment along with the therapy sound, which is what she did for me... but it needs to be low enough not to damage your hearing if you're normal. I use white noise at or around the frequencies of my common tinnitus for the therapy noise. When I used them a lot, I could tell how bad my tinnitus was generally because of how loud I had to have the therapy signal. Over the years, the therapy signal got lower and lower, although sometimes, even now, I have to drive it up. Still, that's largely because I don't even bother with the therapy when the tinnitus is low anymore. Even with medium tinnitus, I just generally deal with it until it calms down.

 

70 dB does not even begin to mask my tinnitus, but then it is reactive. When I sit in silence, what I hear does not sound like 55 dB to me. So yours is both loud and quiet from my perspective. It was probably disturbing for you in silence but drowned by many normal ambient noises. Mine cannot be drowned by anything, well, maybe the shower, but not completely 80-90% on a good day.

Regarding "the tone had to get to or above 55 dB at the frequency before I could hear it," it still does not make sense to me. It is hearing loss. It is not like your tinnitus will match every test tone to "mask it." And if your tinnitus is hiss/static, i.e., multiple frequencies, you still should be able to pick up tones. I have 55 dB hearing loss at 8 kHz. I can hear tones reliably over my tinnitus; you just need to make them sufficiently loud.

 

Yes, sufficiently loud! I could hear the audiogram tones; they just had to be over 55 dB in the frequency ranges of the loud tinnitus! This is why I was marked with hearing loss for that amount, although it may not have been the case; it could have just been the loud tinnitus, and I could hear fine the whole time.

The therapy signal from the hearing aids is generally known to make tinnitus worse before it makes it better, and I thought I had some reactive tinnitus anyway. It did get worse initially with the therapy signal, but then the brain mixes. Nothing masks my tinnitus because the frequencies are so high, and the hearing aids won't even generate that high. The idea is to mix the therapy signal with the tinnitus and have the sum of those noises be far less annoying than just the tinnitus. This initially took three weeks to a month for me with loud mixing. Over time, everything went down. I'm not sure if anyone has ever explained this to you or if you're even interested.

It was both disturbing in silence and comforting. If you have no reference noise, then you don't really know how loud your tinnitus is to you, or actually is, or whatever you want to call it. Silence was OK. Bar noises were OK but some environments were not OK and still aren't the greatest.

 

It has been a long time since I related to something said in the forums. I have learned more or less to be in silence with my tinnitus, which in silence I perceive at all times but not that loud to me (on most days, there are days in which it is always very loud).

My main problem is not having the capacity to mask it, even in very crowded places / heavy nature sets, like lots of birds tweeting at the same time. Hearing my tinnitus in those environments where the tinnitus is "not supposed" to be heard is what depresses me the most.

Of course, I have hearing loss (of unknown origin and progressive through time). If it wasn´t for the hearing loss, I think I would be more or less OK, coping when in silence and being masked or distracted when in noisy environments, like the first years of this. But now... yes, I´m screwed.

 

My doctor wants me to do an ABR test after I do a hearing test.

My 8 kHz (I thought all along it was 15 kHz) bilateral tinnitus level was measured at 40 dB, and she did a 50 dB inverse mask noise for 1 minute, which made my tinnitus drop out for 30-45 seconds. In the last year, my tinnitus level has doubled to the point of seeking treatment. I am looking into Lenire and Nuheara for relief.

 

Sorry to hear your tinnitus continued to worsen. I know the feeling.

I recommend reading the Lenire reviews on Tinnitus Talk. It's a habituation device that doesn't look promising for reducing tinnitus volume. The Auricle / Dr. Shore device has a better chance of lowering tinnitus, although it's a long wait. Be sure to protect your hearing to limit any worsening.

 

I may have had tinnitus longer than anyone here, or at least longer than what I see. Somewhere between 25 and 35 years, I didn't put a mark on a calendar or anything, but that's roughly accurate. I wouldn't call my life normal because I still have to be super careful about exposure to loud noises, stress, medications, and such, and I pretty much have to sleep with a box fan and sound machine by the head of my bed.

I'm also more uncomfortable and reactive to annoying noises that others might ignore. If it's a music event, I might not be able to go if it's real loud. Outdoor music is great because I can get back from the speakers.

But all this feels "normal" to me now; it's rarely a huge inconvenience. There are times when it does get amped up and stay that way for weeks, but knock on wood, it always eventually returns to base.