Small Victories Are Tinnitus Success Stories Too

OK this is a novel but there are two success stories in this post and I hope it helps somebody.

While reading all the success stories looking for hope and inspiration, it occurred to me that for people who are either new to tinnitus, or like me, are having a new presentation of it, stories about small victories can be very meaningful. They say improvement with tinnitus is measured in months not days. You can imagine that in the early stages reading success stories about people who habituated after 6, 9,12 months, 2 years can feel like an eternity. So we must focus on the small victories along the way.

My first success story:

I was diagnosed with bilateral tinnitus after a loud concert in 2015. After a period of about a year where I mostly masked and slept with a sound pillow, I noticed that the sound had disappeared and I no longer needed those items. I realize now that my tinnitus was quite mild and easily masked, which helped me cope tremendously. I had my hearing tested and it was fine. The noise in my ears sounded something like a light saber / tonal ring. I was devastated and visited this site often. I can’t say that I woke up one morning and it was gone. It was just a normal progression where I stopped turning on the sound machine and my sound pillow broke and I never replaced it. People have asked me “ did you habituate or did it really go away? “ I’m here to tell you it really went away. I know this because I could completely occlude my ears on a pillow and not hear a thing. So there is hope!

Since 2015, I protected my ears with custom earplugs. I lived life normally and never gave it another thought. And regrettably, I never came back here and wrote a success story. I feel badly about that as it had crossed my mind several times to do so.

Fast forward to 2020. In mid April I developed what sounded like an echo in my left ear. Then I noticed a low tone ring. It is easily masked by most ambient noise. I have aural fullness and pain and pressure in the ear. Sometimes pain in both ears, but mostly the left. I, of course, went through all the anxious emotions, couldn’t sleep, ruminating about it, couldn’t understand why after protecting my ears these past few years this was happening to me. I went to the ENT and had my hearing retested and I have mild loss at one tone in the left ear. Right ear is fine. Then about four weeks ago I started to notice a bilateral high-pitched hiss. I experience it more in the right ear but it is bilateral. At times it sounds like a high-pitched whine like maybe a cicada would make. But I also noticed that it was relatively mild, although due to the pitch I could hear it over other things. Over the last two weeks it has fluctuated wildly. It can fluctuate within a day. So if it isn’t annoying enough to hear it over almost everything because of the high pitch ( not able to mask), I also have no idea if it’s going to be quiet or loud. Again the anxiety was through the roof. I could sleep due to the sound pillow and sleep medications and that’s probably the only thing that has kept me sane. But for the past two weeks I haven’t been able to eat and have been living with a constant pit in my stomach, which starts from the minute I open my eyes in the morning. I have no experience with fluctuating tinnitus. Some morning msg I can bare,y notice it. Other days it is very intrusive. It definitely has a somatic component and it can be made worse by just moving my neck a certain way, clenching my teeth, yawning, moving my jaw, pressing behind my ear lobe. The noise itself is not unfamiliar to me. I have experienced it off and on when I yawn or when I’m sick and my ears are blocked. I have been to the ENT and I have no fluid in the ears, no wax, no problems. This presentation is indeed a mystery. According to my ENT “sometimes the ears do what they want to do. “ Now we all know this isn’t about my ears, it’s about my brain. I’ve read countless success stories. Made use of the ATA’s support line and spoken to a number of people who have long habituated to intrusive tinnitus. I have racked my brain trying to figure out what causes my bad days versus my good days. Or what causes my good morning to turn onto my bad afternoon. I looked at foods, alcohol, salt sugar. I can’t figure it out. There seems to be no rhyme or reason. Maybe TMJ or neck issues, which I have been having since February. Who knows?

The point: The small victories. Yesterday, after having a nice lunch with some friends my quiet morning/afternoon turned into a very loud early evening. I had to drive my son and three of his friends to baseball practice last night that was an hour away. I had to wait over two hours for them and then drive them home. The whole time my ears were ringing away. I heard them over the air conditioner in the car, over the radio, over the boys talking in the car. But I did it! And I didn’t have a panic attack. I managed! I got through it, It didn’t break me! I woke up this morning and my ears were still singing away and I knew it was going to be a bad ear day. However, I manage to shop for food, have my parents over for a Father’s Day lunch, and take my son shopping for some summer clothes. And the cicadas in my ears were hissing or whining away depending on the minute. It was annoying as hell. And I soooo wished it would just stop. But I had things to do and I have my life to live. So yesterday, as I noticed the volume and intrusiveness start to perk up knowing that I had to make that long drive with the boys, I knew it had to be mind over matter. I sat back and I said I have to make friends with this noise. I know that may sound crazy but I actually read it here somewhere. Now that doesn’t mean that tomorrow I won’t have a tough day where I will cry and be frustrated and exhausted from dealing with this constant noise while I’m trying to work. But for me, it was a huge victory to get through last night and most of today with some degree of success. Yes the ringing was constantly on my mind. But I could take moments and forget about it while I was focused on other things I needed to do and I am only really a month in. And who knows, tomorrow could be a good ear day.

So I just thought I would come here and write this because I think my journey is going to be one of many ups and downs. And if we don’t recognize the small victories we don’t have anything to sustain us during the long months while we wait for habituation and for our brains to realize that this noise needs to be sent to the background. I still hope and pray that it will actually go away or that it related to my jaw or the neck problems That. Ignite be fixed but if it doesn’t, I am sure at some point I will come out on the other side. And hopefully I will be able to come back and write a success story where I’m able to say that I almost never hear it at all unless I look for it.

To all of you with the patience to have read this long post, best of luck, and I hope some of you find this helpful.

 

Thanks for this. You're absolutely right that we have to celebrate, and 'bank' the victories. Over time - I hope - all the little victories add up until the positive narrative becomes the dominant one.

 

I absolutely enjoyed reading all of it my friend. Your story is inspirational. God bless you!

 

Some small victories for me:

No more dark thoughts like I was having when it first started.
Finished reading a book for the 1st time since getting T, and mostly read it in a silent room.
125 day streak on duolingo learning German
I've even had a few days here and there where I don't notice it at all (until bed time, impossible to not notice it then)

 

If you’re having issues with TMJ please look up The Urbanek Splint patented by Dr Anthony Urbanek in Brentwood TN. He has a Facebook page. This may help you.

 

Also a small victory for me!!

My ears are not sooo full anymore, sometimes I feel like they are normal!
I went 2 weeks without coffee and I think I will completely cut it because I think it makes tinnitus worse!!

I was in physiotherapy and they massaged my neck and shoulders, and when I came home, maybe I am just imagine it, I didn't have tinnitus!

Also I am getting a tooth splint because my right side of the jaw is inflamed and the doctor said that maybe it could also be a reason! Which I kind of doubt because it isn't severe but I am staying hopeful!

Slime from my inner nose and ear is still running into my mouth I feel like but that means that maybe there was an inner inflammation!

So on Monday I have an control check with the ENT and let's see!

 

Yes- we need to hold onto the small victories. My tinnitus is annoyingly loud today, BUT... from it’s worse point - I’m 90% free of the fluttering in my ears, low bass tones, car engines, Doppler effect (like cars driving by), head tinnitus. etc. Most of those symptoms lasted for months before going away. Now I’m left with the high annoying eeeeeeeee in both ears. I’m hoping this fades into white noise. Today isn’t a great day, but I’ve come a long way, and I’ve climbed out of some very dark places. I have to believe it will get better.

 

It certainly seems like you have gotten better in the last seven months which is amazing! How long would you say until you started to notice improvement and some of your sounds and fluttering/sensations going away?

 

@tbuzz89 I’d say that it continued to get worse (in terms of adding new sounds) for the first five months. I started with pure tones in both ears, then it just went down hill from there. I had pulsatile tinnitus for a while as well. There was a time where I felt like my chest was shaking too (probably my nerves). The fluttering came on twice since having tinnitus, both times it was on and off for a couple weeks. The bass tones, car engines, etc., all lasted slightly different amounts of time, but were there for a few months- give or take. The head tinnitus came on twice and went away both times. I realize any of these can still come back, but I’m hopeful they won’t. Hopefully the take away here is- spikes/new sounds, can last months and still resolve themselves. If anyone is wondering if I changed anything to help my situation- my best guess is this: meditation, exercise, therapy, and diet.

Having said that, it could be time doing its thing....but I feel like settling the nervous system is a key element for me.

 

Did it help you?

 

How are you doing now? Hope it has trended positively!

 

Good to know that head tinnitus can get better.

 

@GBB, sorry I haven’t really been on the site much. I realize your question was about four months ago. I actually was doing really, really well. The noise didn’t really bother me much and I ignored it most of the time. The bilateral high pitched tinnitus really leveled out. I still get some increase in volume but it doesn’t bother me much and I can move on pretty quickly. Pretty much every day I forgot I had tinnitus. Even the echo in my left ear no longer bothered me. Most of the time I didn’t hear it and if I was in a quieter environment and I did I would just refocus on something else and I had no emotional attachment to it at all.

Then a week and a half ago the volume in my left ear jumped and the tone changed to more of a pure tone rather than an echo. I went to the ENT immediately and had a hearing test and have had another shift in my hearing in my left ear. Right ear is still fine. Now I have to go through all these tests because my hearing loss is only in one ear. Although very mild and most frequencies are all still within normal range (barely), it is definitely a shift from my last exam nine months ago. When some minor loss was noted nine months ago, the ENT and Audiologist hypothesized that it was the result of the virus. That hypothesis may not hold true anymore considering that I’ve had additional loss. I am on steroids now and looking down the barrel of a whole host of tests including a brain MRI, a meeting with a rheumatologist, another hearing test and an evaluation by an otologist. Not really where I thought I would be right now.

I am back to masking and using my anxiety meds again. I think my anxiety is mostly rooted in the fact that this is the second time my tinnitus has changed or re-developed. I’m clearly very sensitive to any shift in hearing. I’m 54 so what does that mean for my future? Age related hearing loss is almost the norm for pretty much everybody according to my ENT. I’m a good 10 years out from when most statistically start experiencing age related hearing loss. I can only imagine the cacophony of sound I’m going to be dealing with in a few years. That’s probably the thing driving my anxiety the most. Ironically my father has significant hearing loss which was occupational. He has hearing aids but he does not hear well at all. He is 80. Yet he has no tinnitus. My mother also has some hearing loss - not as bad as my father though. She also has no tinnitus. Go figure!

I appreciate you asking.

Danielle

 

@Forever hopeful, after reading your post, it seemed like you were almost in the clear. Your story is very similar to mine with regard to my tinnitus perception and our age. If it hasn’t already, I believe your pure tone will fade back into the not-so-horrible high pitch hiss. At onset, I had the echo with the pure tones as well. Now it’s just the hissing. Whatever volume I wake up with is constant for the day. Like you, I have low, medium, and high days. Interestingly, on the rare occasion I’m able to sleep in a little, sometimes I’ll wake up to a higher volume hiss earlier in the morning, then fall back asleep for a couple of hours and wake up to a lower volume.

Hang in there Forever Hopeful!

 

@Rick Brewer

Thanks for your post. It’s now almost 5 weeks since my tinnitus worsened. It has settled back into a static/echo/hiss most of the time, which I much prefer. But I still have periods where it is a pure tone and I can notice it over certain ambient noise that I couldn’t before. I had another hearing test last week following steroid treatment and one of the frequencies in which I experienced a 15 dB loss has come back up to where it was before. But the midtone frequency that was down to 30 dB last year and them to 35 dB this year did not improve. Otherwise all of the other frequencies are within normal range.

I saw a neuro/otologist at Massachusetts Eye & Ear infirmary yesterday. It was very interesting because he completely normalized tinnitus. He said pretty much everybody with hearing loss has tinnitus to a certain extent. Perhaps some of them can only hear it in a soundproof room? I argued that my father and mother who both of hearing loss, my dad’s occupational and my mom’s being age related, do not have tinnitus. But nonetheless he insisted that is a normal part of the brain’s response to less input to the auditory cortex. He basically told me that I have a damage left ear. He said for him to hypothesize why would just be fairytales. And that’s a quote “fairytales”. And although he is doing an MRI to rule out an acoustic neuroma, at the end of the day he has no idea why my left ear is damaged. And he said that damaged ears have variable hearing the fluctuates all the time. Sometimes it’s better sometimes it’s worse. But in general I evidently have excellent hearing. And really freaking annoying tinnitus.

I did ask him if I can expect my tinnitus to worsen as I get older and have more age related hearing loss, which I have been assured by both my ENT and this particular physician will definitely happen to all of us. Yay! More hearing loss. And he said there is absolutely no correlation between the amount of hearing loss and the perception of tinnitus in terms of volume etc. I wonder how true that is considering that I experienced a worsening of my tinnitus with a slight shift in my hearing. I feel like nobody knows which end is up. And this specialist is like world renowned in his field.

I left with a referral to a mind-body specialist to get my anxiety under control.

Best,
Danielle