Secret Sufferer Introduction

Please allow me to introduce myself, and please forgive some of my vagueness for the time being. This my selfish introduction to put things out there and get some weight off my shoulders, to others that understand what I'm going through, and the insanity of dealing with this.

I am a lower-middle-aged male, and currently, a secret tinnitus sufferer. Beyond my wife, mother, and doctor, I've told no one, and they understand the importance of others not knowing. Without going into too much detail, my professional life, a well-respected "brand," and people's jobs, is built around my subjective ability and reputation to know "quality" sound.

I am currently and quietly executing a plan to remove myself from my "position" without destroying something that took many years to build. Once I feel the transition is at a point where the "brand" can succeed without the need for me, I plan to come out publicly, help raise funds for research, and help others.

I've used earplugs, including custom-fitted, for years, to protect my ears. I now fear my increased sensitivity to sound could be what lead to my tinnitus. That's a bummer.

Approximately 9-months ago, I wish I could recall the exact moment; it was as if I woke up one morning and suddenly started hearing an approximate 8000 Hz "ringing" at what I perceive to about 85dB, at its lowest state, in my head. Since then, it's perceived to be panned right of center. The only cause I could maybe think of is I was in a building where the smoke alarms went off three different times in a short period of time. But I don't recall the ringing immediately after.

I've had a Tympanometry examination and MRI. My tests did say I was slightly outside the normal range for my age in regards to the hearing loss above 9 kHz, which was surprising to me. But this test was after all this started. Now it's tough to hear "past" the ringing. The ringing is louder in my better ear. If it were due to hearing loss wouldn't the ringing the louder in the ear with the most degradation?

I am someone that many would describe as having a higher sensitivity to the qualities of sound and music. I was also the person who would perceive the tiniest sounds that others couldn't perceive. Like appliance frequency, vehicles or people outside the home down the street, etc. Music has been a part of my life since my earliest memories, and a profoundly important part of my emotional as well as financial well-being. Quite literally, sound is my life, and a most positive part, until now.

Now? I can't listen to music or the quality of any sound at all without total disappointment, perceptive devastation, and "ringing" increasing to maddening levels. I can mostly tolerate talk radio.

I am, for the most part coping with it and staving off major depression; given my leadership roles over the years, I've learned to deal with a high degree of stress for long periods. But I certainly have those moments, thankfully usually brief, when I just want to explode and say fck it. I am trying to shift the emotional rewards that sound used to offer me with other "arts."

My family doesn't seem to get the seriousness of the situation, but it could also be I'm not outwardly showing the actual amount of stress and anxiety it causes me.

I suppose that's as much of the sob story that needs to be told; I know those on the forum already get it.

I do have a few comments regarding my experience so far.

I've read several Michael Leigh's posts already, and it's a wealth of information, thank you, Michael!

Quoting @Michael Leigh, "Your Dr has probably told you, it's tinnitus and nothing can be done, you'll just have to learn to live with it."

That is precisely what my GP and my supposed "top" ENT Doctor told me after speaking to both of them, trying to explain that my life and the asset my ears once were, while fighting back tears, is totally devastated. I felt totally deflated. They simply didn't get it. I tried to explain my ears being this way is like a pilot losing his eyesight. They don't get it.

I was not recommended to a hearing therapist, but this seems like something I need to pursue. Once the pandemic is over, of course. Why I wasn't told about Tinnitus Retraining Therapy, I don't know.

I look forward to reading more and developing a more "educated" strategy for dealing with this.

 

@MAnSV
Thank you for your kind comments and hope, you start to feel better soon

All the best
Michael

 

Hey there and welcome to our f*ing show...
I guess you've already visited our research section, but to summarise:

There is always the chance that it gets better on its own. If not, you can stay with us in this limbo (still trying to make the best out of it) waiting with us for all these new medicines for hearing regeneration that should be out in the next couple years. The next thing we'll probably get is the Susan Shore bimodal stimulation device, which will be out hopefully next year, which should be able to reduce tinnitus to some degree. The gold standard in my opinion is the University of Minnesota Device, which however takes the longest to arrive (5-10 years). We have one anecdote of it curing severe tinnitus completely.

If you're desperate in the moment, you have the following options in my opinion:
- Meditation/CBT: helps some here, but the effects seem somewhat limited when dealing with very severe tinnitus such as yours seems to be.
- Lenire (first generation bimodal stimulation device, unfortunately doesn't yield too much of an improvement).
- Stem Cell Therapy (very expensive, improvement not guaranteed).
- Psychopharmaca. The unfortunate truth is that some here can only continue thanks to benzos. To be frank, if I had 85DB tinnitus, I wouldn't know how to survive without severe medication for the next years until we can get some abatement.

 

Have you experienced Any fading/improvement compared to how your tinnitus was 6 months ago?

Did your tinnitus begin within 14 days of the last smoke alarm going off?

Both of those are dangerous tests that often result in tinnitus getting worse. I am glad that this hasn't happened to you.

Send them the link to the post below.
https://www.tinnitustalk.com/thread...m-being-murdered-by-merciless-tinnitus.29510/

You will want to make sure that you don't hurt your ears during this period of vulnerability. You will want to ensure that you avoid taking ototoxic drugs, that you don't have microsuction done (if you need to clean wax out of your ears; a manual tool should be used), and that you don't have your dental hygienist doesn't use an ultrasonic scaling tool on you (a manual tool should be used). For more details, see

https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

There are moments when I am distracted and don't notice it. However, the moment I realize it, it immediately returns. Unfortunately, it has not improved since I first noticed it; however, it also hasn't become worse.

I use masking techniques; ocean waves, at night, to fall asleep, but the years of training my ears make it so I can still hear the 8000hz. I'm used to critical listening...

Bill, it is possible it began in that time frame, I did not think about that.

Yes, I can recall being very frustrated during the tests trying to hear through the noise knowing just a month prior, I would not have an issue.

My doctor did put me on a medication for a short time, saying it sometimes goes away when taken during the early stages of onset. It did not work for me, nor did I have any adverse side effects.

Both my GP and ENT said I had remarkably clean ears. That's a positive, right?

Thanks for the additional tips and things to watch out for. I have so much more reading to do.

I was going down the road of notch therapy, as to why it works made sense to me since I seem to have a well-defined tinnitus frequency. However, I have not started this therapy, although I did make an ocean wave and environment track.

 

Thank you for these suggestions, I will look into them. I will also read into those potential cures, that's encouraging!

 

My tinnitus began 10 days after my acoustic trauma. I am still not sure whether my tinnitus was caused by that trauma or the hearing test (including a Tympanometry test) that I had done in the morning of the day when my tinnitus turned on (which happened in the evening). This is why I have been paying attention to the delay between the original trauma and the onset of tinnitus. It is my understanding that tinnitus can begin as long as about two weeks after the original exposure...

With masking the idea is not to make it impossible to hear one's tinnitus. The idea is to give yourself something else to focus on besides tinnitus. Initially it is natural to continue focusing on tinnitus. But eventually one can switch to focusing on the masking sound. The sound of crickets works well with high pitch tones and hisses.

Was it Prednisone?

Yes, although some people's tinnitu goes away months after they have their ears cleaned.

 

Yes, that’s the one! I so hoped it would work...

Also, I looked back at my calendar during the onset times.

The week I’m certain it began, because I had dinner with friends and recall my ears screaming and thinking I could never go out again...

This date was 17-days after the alarm trama and 11-days after a dental cleaning.

I have had my teeth cleaned three to four times a year for the past 15-years. I need to check and see if they use ultrasonic. I believe they only scrape and polish.

 

If they had used an ultrasonic tool, then I am pretty sure that was the cause of your tinnitus. Otherwise, it isn't clear why this has been happening to you.

What was the dose? Was it greater than 40 mg?

It might have worked, and as a result of you taking it eventually your tinnitus will begin fading.

 

It could be, I will check what they used. But given your earlier statement the 17-days was the dinner. I noticed it that week, if it were 5 or 7 days before the dinner, it puts me within your window of 14 days or less from date of the alarm trauma as well. I can’t recall if I had an issue at the dentist. That whole week is a blur and I just know it was very stressful and shocking for me.

The prescription was this.
Take 3 20mg Tabs By Mouth In Morning W/breakfast X10day Then 2 In Am X4day Then 1 Tab Am X2day Then Stop

Something I’ve noticed since the onset of this, I believe due to it occupying my mind so much, is my memory, and ability to think clearly and executive efficiently has diminished...

 

You have a good/trustworthy doctor. Sometimes doctors want to get one out of their office, so they prescribe a small dose like 20 mg per day that they know is too small to do anything.

In any case, it's good to know that you and your doctors have done everything you could.

A number of possible treatments are in the pipeline.

You might consider trying Lenire...

 

Does anything mask it completely, like a shower, a river, moderate street noise?

 

Ocean wave tracks mask it best, however, as I mentioned to Bill, I can still hear it. But, it does offer a distraction.

The shower, the water smacking against the floor, running faucet, even urinating standing up into a toilet bowl usually causes it to amplify; I sit down a lot more now...

 

I see. What you have is reactive tinnitus. I used to have that too after my noise trauma / setback, but faded after 1-2 months (faster after the setback). Mine did react pretty much to the same sounds as yours, I guess because they are/contain high frequency sounds. Unfortunately there's not really much to offer regarding reactive tinnitus, except hoping for it to go away or wait for a cure.
There are other members in here that live with unmaskable tinnitus (not necessarily reactive, "just" very loud) and some of them have eventually habituated, such as @billie48. You should read his success story: https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

Also, you might be interested in this video about Matthew Renze who explains a way to deal with bad tinnitus and visual snow (which is like tinnitus on top of tinnitus):

Visual Snow Conference 2018: Matthew Renze

TLDR is: Meditation, yoga and exercise help to deal with the stress your symptoms cause. Might be more convincing though to see somebody with really bad symptoms and how normal he seems.