Tinnitus Roulette...

[VickiD]

My tinnitus started 3 months ago (no idea why) but it appeared and I latched on the little sound that I heard in my ear which got worse over the days and weeks ahead. When I plug the noisy ear I can hear the noise there like someone is blowing through my eardrum. I used to just hear nothing - like what you'd hear if you put a shell to your ear.

After wearing earplugs for years due to hating external noise (such as traffic) I got bouts of Swimmers Ear (Ottitus Externa) and had to use eardrops (Soradex and Optimize) but I stopped using those in January and the tinnitus appeared in March so I don't know if there was an ottotoxic element to these ear drops I got but I heard it could only cause an issue if your ear drum was perforated. Mine wasn't; I would have known.

I didn't have tinnitus in January after the ear drops or Feb.

I am terrified which each day that passes because my t on my right ear sounds like a tone two fast flute and fax machine. It flits between that and a one tone whistle all day every day. I know when it's doing it's 'mad thing' because I hear it more and I know when the whistle is there because it's less noticeable. I have started getting it in my other ear too. After 3 months it's now starting in my left ear. This makes me petrified!!!!! I am eating well, albeit nervous as hell and living life on a knife edge every day, but this monster is wrecking my life. I am a shadow of my former self because of tinnitus and it stresses me out hearing the noise. I feel like I have no control and it's just THERE - doing what the fuck it wants when it wants and no ENT doc or anyone can help. It's utter bull shit in this day and age that no medicine or treatment can help it but 'play roulette with this mad shit sound' that you know is so unpredictable.

What scared me the most though was the story of that Gaby woman in Holland, she developed it so bad it sounded like a train in her head. She killed herself. So, do we all sit and wait to end up like her? I started to see a slight improvement 2 weeks ago but then I woke up with it back to the shitty fax machine again and loud. I have no idea why because I don't drink caffeine anymore, rarely drink alcohol, eat healthy and take vitamins.

What else can I do? I was made redundant in January and it's not helping that I am not working at the moment but I wasn't destitute when I left my last job, I was coping with it. I lost my mum to Cancer in 2014 and I coped, no tinnitus and yet it just appears and I have been through much worse stress than I have in March to be landed with this hideous affliction.

Any support/help would be welcome. Habituation I am unclear of - is this when your perception of the sound goes down? mine does go quiet in the mornings when I first wake up then as the day goes on, BOOM, here it is again - till I eventually go sleep.

 

[linearb]

if possible you should get a high-frequency hearing test. If you can't get it done clinically, you can use something like http://generalfuzz.net/acrn/ to get a general sense of your HF hearing between ears:
* set the slider to ~4000 hz
* using headphones (carefully), one ear at a time, set the volume until you can only barely hear it in one ear. So, start with the left ear and make the sound barely audible there.
* switch the headphone to the right side. see if you can still hear the sound, and if it's "louder" or "quieter" than it was on the left.
* re-set the volume so that you can only barely hear it on the right side, and then switch back over to the left and make the same comparison.

If you do this moving up in frequency by 1-2000hz at a time, you'll get a picture of how symmetric your hearing is.

If your hearing on the tinnitus side seems to be worse than your hearing on the other side, then you at least have a plausible reason for why you might have tinnitus.

What scared me the most though was the story of that Gaby woman in Holland, she developed it so bad it sounded like a train in her head. She killed herself. So, do we all sit and wait to end up like her?

It's simply not worth thinking about, any more than having some back pain is a good reason to start reading about people with progressive back pain who end up bedridden and eventually suicidal. It can happen, sure, but it's extremely unlikely. Tinnitus is relatively common. Severe, distressing tinnitus is less common but still afflicts millions of people (probably hundreds of millions globally). The number of people who actually end up disabled from work -- let alone suicidal -- is extremely, extremely small. I'm not saying that to downplay the distress or pain of those unfortunate people, but it's so astronomically unlikely that there's no productive reason to think about it, you are much more likely to be hit by a car tomorrow or randomly develop terminal cancer, than you are to be the next Gaby.

To the extent that anything you read on this forum is adding to your distress, I'd suggest that you simply not read it. There are a huge number of people from a wide variety of walks of life here, with different symptoms and different severity. If you start comparing yourself to worst-case scenarios you are going to amplify your own stress, which is the last thing you want to do right now.

If you look at the success stories sub-forum you will find a lot of accounts from people who have either actually had a subjective improvement in their symptoms, or simply learned to accept the sound without having it run their lives. It's probably a lot more useful to read those and assume that you will eventually be among them, than it is to learn about the rare cases where people go in the other direction.

Good luck and best wishes.

 

[VickiD]

if possible you should get a high-frequency hearing test. If you can't get it done clinically, you can use something like http://generalfuzz.net/acrn/ to get a general sense of your HF hearing between ears:
* set the slider to ~4000 hz
* using headphones (carefully), one ear at a time, set the volume until you can only barely hear it in one ear. So, start with the left ear and make the sound barely audible there.
* switch the headphone to the right side. see if you can still hear the sound, and if it's "louder" or "quieter" than it was on the left.
* re-set the volume so that you can only barely hear it on the right side, and then switch back over to the left and make the same comparison.

If you do this moving up in frequency by 1-2000hz at a time, you'll get a picture of how symmetric your hearing is.

If your hearing on the tinnitus side seems to be worse than your hearing on the other side, then you at least have a plausible reason for why you might have tinnitus.


It's simply not worth thinking about, any more than having some back pain is a good reason to start reading about people with progressive back pain who end up bedridden and eventually suicidal. It can happen, sure, but it's extremely unlikely. Tinnitus is relatively common. Severe, distressing tinnitus is less common but still afflicts millions of people (probably hundreds of millions globally). The number of people who actually end up disabled from work -- let alone suicidal -- is extremely, extremely small. I'm not saying that to downplay the distress or pain of those unfortunate people, but it's so astronomically unlikely that there's no productive reason to think about it, you are much more likely to be hit by a car tomorrow or randomly develop terminal cancer, than you are to be the next Gaby.

To the extent that anything you read on this forum is adding to your distress, I'd suggest that you simply not read it. There are a huge number of people from a wide variety of walks of life here, with different symptoms and different severity. If you start comparing yourself to worst-case scenarios you are going to amplify your own stress, which is the last thing you want to do right now.

If you look at the success stories sub-forum you will find a lot of accounts from people who have either actually had a subjective improvement in their symptoms, or simply learned to accept the sound without having it run their lives. It's probably a lot more useful to read those and assume that you will eventually be among them, than it is to learn about the rare cases where people go in the other direction.

Good luck and best wishes.

I had a hearing test and it was perfect. No clue to why it's worse on one side.

It's so distressing though. How many people actually get better? Who's goes away? Same amount as who may be committ suicide I suspect - rare as hens teeth. :-(

 

[erik]

Mine hasn't gone away but it has gotten better in a sense. It is still loud as hell at times but I manage to ignore it most of the time. How do you ignore it? Not sure, it just happens with time...slowly but it happens. Your mind and body adapt and just get use to it. Five years into this, my hearing is still fine. ENT told me, I have the hearing of a baby- whatever that means. Regardless, I know it still is not as sharp as it use to be and I suspect that to be the cause of my T. Keep the faith, stay strong and you are not alone!

 

[LadyDi]

I had a hearing test and it was perfect. No clue to why it's worse on one side.

Did you have a hearing test that went beyond 8000 hz? That is where most hearing tests end but there can be loss in higher frequencies. I also was told I had fine hearing until I went to a university-based research center and had more sophisticated screening. Turns out I had quite a good deal of high-frequency loss in one ear, a smaller amount in the other.

There is no medical definition of habituation, so everyone kind of has their own. But in a nutshell, to me it means when you just don't hear your tinnitus any more on a regular basis because you and your brain have become accustomed to it. And when you do hear it, it doesn't really bother you. Annoys you or tires you out some days? Yes. But no more anxiety reaction, etc.

 

[Path Maker]

The amount of people who get better are less rare than you'd think. They are out in the world not talking about it much. You can cope with this, and you may even improve. Please hold out your hope and work in that direction!

 

[linearb]

I had a hearing test and it was perfect. No clue to why it's worse on one side.

A usual hearing test only goes up to 8khz which isn't very useful for anything besides determining if your hearing is so bad that you can't understand speech.

This is why I suggest messing around with the high frequencies yourself.

My hearing is "perfect" on a standard test. Messing with tone generators, I know I have a notch between 13.5-15khz on the left side. This has been confirmed clinically in my case through a high-frequency clinical exam, but that is not a normal thing which a typical audiologist is setup to perform (I was able to get it done as part of a tinnitus treatment research experiment).

 

[Jkph75]

I must be getting that fax that you're sending. Your tinnitus sounds just like mine, except I have a couple of other pitches that occasionally join the mix. I have had it for 3 months too. It sucks. I don't have any words of wisdom. I was just as shocked as you that no one could help or cared. Hang in there.

 

[VickiD]

I have different pitches too

High pitched whistling and then it goes to a fax machine. Has yours improved at all and do you find its quieter at any particular times? Do you think yours was brought on through stress and anxiety?

My tones have a low tone that seems to be constant but I can't hear it during the day. There's two other high pitched tones like owls hooting and the fax machine. It's horrid. I wouldn't wish this on my worst enemy.

I must be getting that fax that you're sending. Your tinnitus sounds just like mine, except I have a couple of other pitches that occasionally join the mix. I have had it for 3 months too. It sucks. I don't have any words of wisdom. I was just as shocked as you that no one could help or cared. Hang in there.

 

[Jkph75]

I have different pitches too

High pitched whistling and then it goes to a fax machine. Has yours improved at all and do you find its quieter at any particular times? Do you think yours was brought on through stress and anxiety?

My tones have a low tone that seems to be constant but I can't hear it during the day. There's two other high pitched tones like owls hooting and the fax machine. It's horrid. I wouldn't wish this on my worst enemy.

Hmmm. Let me check. I've got all of those tones floating around in there, except I couldn't find any owls. I'll take your owls and trade you for this ultra high pitched fizz I've got going on.

I'm not sure how I got this. I was super stressed. I had just had a baby a month before I woke up with this. I had other things going on too, like dizziness and feeling like I couldn't hear very well. Those feelings are gone. Now it is just the tinnitus which is getting much much worse. Sometimes, like now, it is so loud it just sounds like a tea kettle that is boiling. I can't sleep at all without taking something. It's ridiculous.

 

[VickiD]

Stress is meant to be the culprit. If that's the case then maybe try reduce stress. It's hard I know but I'm doing everything I can to give myself the best chance.

I'm sorry you feel bad.