Not Much Unlike Many Others Here...

Hi

I'm a 50 year old man living in NYC. My T story started about 12 years ago. I was out at a dance club very late at night. At some point, they cranked up the volume on the music so loud, that I remember thinking that I've never experienced anything like it. It was louder than the loudest concert I've been to. Anyway, I distinctly remember feeling a momentary vibration inside my right ear. It lasted probably about 2 seconds at most.

Well, that was the defining moment. I woke up the next morning with the "after a loud night" high pitched, monotone ringing in my ear. Based on past experience, I thought that it would probably go away within a day or so. But it never did. And it's been with me ever since.

In the beginning I was very freaked out and very depressed. I never saw a doctor or an audiologist back then because I started researching Tinnitus and learned that there is no known cure. I got anti-depressants and sleep meds (klonopin, ativan, lexapro, welbutrin) from my medical doctor. It took a long time for my anxiety to go away with regard to my T, but I guess over time, I've habituated to it to the point where it doesn't scare me or get me down.

I'm not going to say that I don't get the occasional "pit in my stomach" feeling, thinking "am I going to have this for the rest of my life?" which is usually also accompanied by panic and despair. But these episodes are few and far between, and most of the time I just try to stop myself from paying any attention to it and focus on other things. It's not always easy, especially in quiet environments. I don't have to explain that to the members of this forum.

Recently I started sleeping with a white noise machine in my bedroom. This has definitely provided me with a lot of relief at night and I think that my T is definitely milder in the mornings now. Like many others here, I also played around with white noise programs on my iPhone and listened with one earbud in while at work. Temporary relief is better than nothing.

(BTW: a great website for different white noise options is mynoise dot net. This site has many different options and noises available, but it has a very cool calibration feature that allows you to play the white noise pattern based on your hearing curve. There's a little app on the site that allows you to create your hearing curve by listening to the different frequencies and adjusting the volume of each to match where your hearing is better or weaker. Then it saves that curve and you can apply it to the different noise patterns.)

A few weeks ago, I began down the road of seeing an audiologist and investigating maskers and hearing aids. My hearing test showed moderate to mild hearing loss in the higher frequencies. (And of course, when I calibrated on mynoise dot net, I had to increase the volume of the higher frequency bars in order to hear anything in that range.) The audiologist told me that with this degree of hearing loss, she would generally not prescribe amplification (ie, a hearing aid), but if I wanted to try a masker, she would absolutely work with me.

At first, I got the Starkey Xinio. She programmed it with the microphone off so all I got was the white noise. I wore it for a couple of days, but the problem was that there was no way to modify the volume or change the tone of the white noise. It was on/off and nothing else. I returned it after a week, because there were times when I needed to increase the volume in order to hear the white noise at all, but was unable to. It didn't take too long before my Tinnitus was masking the white noise!

This past week, I got the Widex Dream and the audiologist programmed it with the Zen fractal tones. I have 3 programs, Tones, White noise and Tones+White noise. There is also a remote with volume adjustments and the ability to switch between programs. There's also a "master" program that is just amplification, which can't be turned off via the the audiologist's programming, so she just told me not to use it.

On day 1, I listened to the tones for a couple of hours. I reduced the volume just to the point of where the tones were "mixed in" with my T. I thought it would annoy me more than it actually did. After a couple of hours, the tones just faded into the background. Didn't do anything to cover up the T, but I certainly didn't expect any immediate results.

On day 2 (yesterday) I listened to the tones from the time I woke up until about 3:00 in the afternoon. Then in the evening, I listened again for about another 1-2 hours. I went to bed, turned on my white noise machine and tried to go to sleep. What I ended up with was hearing the tones in my ear, even though I didn't have the device in! I had read somewhere that some people experience "phantom tones" -- that since the tones are playing all day, non-stop, when you remove the device, your brain keeps replaying them. It was the oddest feeling that I can remember in a long time and it took me a very long time to get to sleep.

Needless to say, I was not a happy camper. I spent enough time and effort habituating to the T, and I certainly don't want to spend time habituating to these fractal tones as well. The company (Widex) itself makes no claims that the Zen programs cure or even relieve T. They simply say that by listening to the calming, random tones, the T sufferer will feel more relaxed and less anxious, and thereby break the vicious cycle of T causing agitation, and agitation resulting in a louder perception of the T, thus creating more agitation, and on and on. After 12 years, I don't think it's the relaxation thing that is going to help me.

This morning I tried an experiment. I put the hearing aid on the "master" program which has no tones or noise, but does activate the microphone and provide some amplification. I think that it provided a moderate level of relief since some of the ambient noises that I might not have been hearing previously were being "filled in" by the device. I'm going to keep trying to see if this would be a longer term solution and speak to the audiologist about reprogramming the device to get rid of the tones and just leave options for the white noise and amplification. I also know there's an add-on that allows you to stream from a bluetooth device to the hearing aid, so I'm thinking that I can also play around with the mynoise dot net sounds and see where that goes.

Anyway, I've been reading a lot of people's posts on the forum and I just wanted to share my story. I knew that T was fairly common, but I guess I didn't realize just how widespread it is. I'm staying hopeful that something will break on the medication front in the next couple of years. In the meantime, I look at my T as a condition that just needs to be managed with whatever method works for the individual. I will continue to wait and see and if something looks promising, I will try it. But one thing I know for sure is that I'm not going to allow this to ruin my life. It can be nerve wracking at times, I know, and I truly empathize with everyone here, especially those who have just begun experiencing this. It takes time, but it does get better.

 

Hi Karen

Yes, I only got a device for my right ear because I too only have it one ear.

When I got fitted with the Widex, there was a rep from the company in the audiologist's office. She told me that they typically recommend binaural aids. But at $2000 each, I wasn't ready to risk more money before even knowing what the experience was like. The one that I have has a 45 day trial period with a 10% restocking fee. So in terms of cost, at most, I'm risking $200 if this doesn't help.

My T is pure ringing. One, single, monotone, high pitched, VERY boring note! I was just reading about some folks on here that are trying do-it-yourself neuromodulation. https://www.tinnitustalk.com/threads/acoustic-cr®-neuromodulation-do-it-yourself-guide.1469/ I went to one of the recommended sites to find my tone (http://www.audionotch.com) and I landed at 11250 Hz. I don't see the harm in giving this a try.

Bottom line, when I think about all the people who suffer with pain daily, people who have come back from war with missing limbs or people who unexpectedly have lost mobility and/or freedom of movement due to accidents, terror attacks, etc., I try to consider myself lucky that this is all I have to deal with. It sucks, but it can't take my life away. I won't allow it to.

Funny thing is that since I've been experimenting with these different option over the past few weeks, my T seems to have gotten worse. I realize that it's because I'm focused on it, whereas my game plan all along has been to avoid focusing on it. Our brains are certainly sneaky...aren't they?

 

Thank you for sharing and please keep us informed.
'I've habituated to it to the point where it doesn't scare me or get me down.'
I love that word 'habituated'.

 

ha·bit·u·ate
həˈbiCHo͞oˌāt/
verb

1. make or become accustomed or used to something.

 

I will definitely keep you posted. Right now, I'm leaning toward returning the device but I have over a month to decide, so I will keep trying it in different situations and see if it helps enough to warrant spending the money.

I am also trying out the AudioNotch therapy. Details here: http://www.audionotch.com

 

In 12 years, has your T increased or decreased in volume? Have you had any relapses that lasted days, weeks or months?

 

excellent question from @Jay M I too worry about the future increase of my T

 

Same here, i'm not a big believer in noises re-tuning the brain. I'm no expert but my intuition tells me its bullshit.

 

Hi Jay

I would say that over time, the average volume of the T has remained constant. I say "average" because there are times when it's barely detectable and there are times when it gets to the "really disturbing" point.

I have never been able to find anything that "makes it lower" so if it gets bad, I use music, white noise, or any other distraction that will help me get my mind off it. What makes it louder is definitely mood, lack of sleep or fatigue, level of stress / anxiety, etc.

I'm trying the AudioNotch therapy now. I just started yesterday. There's no claim of a "cure" using that therapy but there is a claim of achieving a lower volume over time. So we'll see...

 

Since I'm using white noise anyway, I figured there's no harm in the AudioNotch therapy which is the same white noise, but with your particular frequency "notched out." It's supposed to stimulate the receptors all around your T frequency so that your T frequency settles down. No harm in trying it, as far as I'm concerned, since it's a minimal investment in effort and money.

 

One piece of advice is "don't worry about what *could* happen in the future. It is counterproductive and will only make you more anxious. I can tell you with absolute certainty that the volume of my T over 12 years has not increased.

 

@NYC50 thank you for your post.

My T was the same for 7 years, it did increase because of an external factor. I would freak out if it did increase for no reason...it would be a nightmare to me. I have T but at least I know why!

 

I've have T for 24 years and counting. I had several relapses. I think each relapse has the same loud T. But it is all subjective. After each relapse I have habituated nicely. It does take many months. I'm in a relapse now. Having gone through this before I am trying to stay calm. Not easy.
I never look to the future so I never worry about relapses. Relapses just happens to me. Why? Don't know. I take all the precautions. Maybe stress? All conjecture at this point.

 

Does yours go back to an ignorable and forgettable level after relapse?

 

@Jay M sorry I'm off topic but I thought you were a girl?!

 

Yes T always gone to my sweet spot. It takes months. Hopeful this relapse will do the same.

 

Lol. Nope! How did you get that impression, was it from my previous profile image?

 

@Jay M: yes!!! If I remember properly, it was a girl !!

 

Originally it was a pic of my wife and I but then I accidentally switched to a pic of my young daughter then corrected with the current image of just me.

 

If I understand you correctly, during a relapse your T volume goes up for what ever reason and it takes several months (1-6 months?) to return back to the sweet spot? Did the volume go down gradually over time or did you just wake up one morning and it was down? The reason I ask is bc I think I've experienced my first relapse. I had a short 6 week episode with T in 2012 and it went away to an ignorable and forgettable level. I woke up with T 11 weeks ago for no stupid reason other than allergies, stress and exhaustion.

 

@Jay M Sorry to hear you maybe relapsing. I learned to take it day to day. It is gradual at some point I wake up and the volume appeared down then I say I can live with this. Then I stop talking about it. I believe it took 6+months to get to I can live with T? Only 5 weeks into the current relapse. Jay 6 weeks and it went away or you still heard it but didn't care? Hang in my experience it get better/acceptable with time.

 

@JayM I've had T since 2007. I had my first relapse last month. In my case, the T is progressively going back to baseline. As days go by, some symptoms/sounds are becoming less of a problem. I was 100% habituated for the past 7 years so this is like learning to live a normal life all over again.

I also seem to have TTS in my right ear... so annoying!!

 

In 2012, at almost the exact same time of year (Spring). I'm allergic to tree pollens. I had this low intensity hissing/buzzing sound and it eventually went away. Since then I could only hear something (a very low ring), sometimes when I was in a very quite room in the house or was trying to listen for it. Now this year I just woke up to loud noises: hissing/buzzing, ringing, slight pulsation with Somatic T. The buzzing sound is on an every other day cycle. Overall it seems to be on the gradual decreasing side of things.

 

My current relapse I also have Vertigo. I suspect this one was caused by a virus?

 

Decreasing that is great.

 

Is the TTS new, i.e., did it increase at the same time your tinnitus increased from your antibiotic?

 

@jazz the TTS is new, in the past 2 weeks actually... The T increase has been going on since beginning of May and it's going back to baseline. The TTS is brand new... very annoying, seems to calm down when I take magnesium!

 

@jazz do you have TTS?