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.
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.
Manager
I was just reading about some folks on here that are trying do-it-yourself neuromodulation. 
Member
