Member- Dec 9, 2018
- 1,568
- Tinnitus Since
- 1992
- Cause of Tinnitus
- Loud music
I did some scanning on the internet and this seems to be the top hangout for tinnitus sufferers.
The suffering that we go through is invisible to the people around us. Very early on I chose to keep this a secret so as not to have people look at me as disabled/damaged. There was also a huge element of guilt/shame in not taking proper care of my hearing, something I still wrestle with as I assess what kinds of things I expose myself to (more on that later). I'm also shy and introverted by nature so I'm not the type of person to seek out support groups. The net result is that this has been a monkey on my back, by far the #1 challenge in my life to deal with.
So here's the personal biography and I'll try to keep it entertaining enough to be worth reading through.
HOW I GOT IT
Like a lot of kids in the 80s, I picked up guitar. I was into hard rock / heavy metal. It was around that time that Pete Townshend "came out" with his tinnitus story and there was a growing awareness not to be stupid and wear earplugs and concerts and the like. I had been to at least one concert that produced temporary ringing, but it went away. I never used to play guitar to the point of causing ringing. I only had a small practice amp but it was capable of producing feedback which I played with a bit similar to Neil Young's feedback album (which caused HIS tinnitus). But that's not what did it.
I was a senior in college and signed up for a talent show. I formed a one off band for the performance and did a rehearsal session in a basement with brick walls and a live drummer. I remember how sharp and annoying the snare and the cymbals were, but I chose to play through it. I had no ear protection and didn't even try to stuff tissues or anything else in my ears. After the session my ears were ringing. Because of my previous experience with ringing after a concert, I felt that things would clear up overnight. However, the next morning they were still ringing. That next morning I was already starting to panic and guilt myself over how stupid I was, similar to someone feelign guilty for having cut off a limb like Tony Iommi of Black Sabbath who lost the tips of his fingers. Nevertheless I initially hoped that if I just gave it another day or two it would go away, but of course it never did. In addition to that, I first noticed hyperacusis when my ears felt pain dealing with the hydraulic brakes from a bus.
MY INITIAL REACTION
All this was happening right at the final days of my college years which is supposed to be the peak of your life. Once it finally dawned on me that this was permanent, I felt, if not suicidal, pretty damn close, as I felt that the quality of the rest of my life would be ruined.
What people who don't have tinnitus don't understand is how it has a rippling effect through the rest of your life. It impacts your emotional health and that impacts how you perform in life, your behaviors, your life-decisions, your motivation. Everything becomes a struggle. Peace and relaxation become unattainable. The highs are few and far between and dulled. The lows deepened.
THE SECRET STRUGGLE
As I said in the opener, my initial impulse was to keep this a secret. It took several years before I even told my family about this. The internet was just coming online and I did enough research to know that there wasn't a cure. I therefore decided never to bother going to the doctor. Instead I just improvised my own coping mechanisms. I played around with some vitamins which just gave me hot flashes and little else. But mostly I evolved a strategy of getting myself into natural environments with masking background noise and finding things to mentally focus on to get my mind off of the ringing. It's been so long that I don't remember exactly how severe the tinnitus was at onset. I do recall being in a soundproof studio in the early days and how excruciating it was. That's when I realized how much I just sort of always sort of gravitated towards environmental noise sources, whether it was an air-conditioner or fan in the summer or a desktop computer fan, TV, and so on.
RELYING ON THE HOPE CYCLE
The upside of getting tinnitus when you're young is you've got enough life left to lead that you can pin your hopes on a cure or better treatment coming online that would allow me to put that chapter of my life behind me and finally REALLY live. For instance, in the 90s I remember when figures like Tony Randal and William Shatner came out as being tinnitus sufferers which made it feel like more of a widespread problem than just foolish rockers blowing out their ears. The 90s were a time of big technological strides and I just thought for sure something would come around. I didn't follow day to day research. I just sort of put that hope in my pocket like a carrot to help me get by day to day. It's a lot easier doing that when you're in your mid 20s than your 40s, that's for sure.
RECENT SETBACKS
A big part of tinnitus anxiety comes from fearing that doing X, Y, or Z will make things worse. I only went to a few shows since I got tinnitus but made sure I wore earplugs. Nevertheless, even that is no guarantee as they're so damn loud. Each time afterwards I would be paranoid that I made things worse. Whether I did or not is anyone's guess. But I was aware that even just raw aging alone could make things worse. Two things happened most recently that I suspect has actually made things worse. One was I was stuck in the subway when a fire alarm went off. Another was I went to an IMAX theater to see the newest Mission Impossible and they had this behind the seat speaker system. The latter in particular is what I think damaged my left ear more which has always been the worse ear. I was wearing tissues which is what I normally do in movies as foam earplugs block things too much, but despite that I remember feeling a very distinct twinge in my left ear during an explosion. Since then I now hear a much higher frequency flutter in my left ear. It's the first time I've noticed anything that isn't a pure constant tone and it's above the frequency that normal white noise normally masks. It's that higher tone as well as reduced overall hearing in my left ear that is making it especially difficult to use my existing coping techniques. The overall volume of the tinnitus seems a lot higher than ever now. It's not the first time I've had a spike but this has been going on for a few months now and doesn't want to let up.
Trying to date the progression of the tinnitus makes it hard to connect cause and effect. For a long time I was hooked on coffee and was chronic sleep deprived. I focused on hobbies late at night. The tinnitus was bad but I always attributed it to the coffee. Blaming tinnitus on a temporary habit like that is in itself a coping mechanism. The thought process goes "Oh, it's just the caffeine. If I stop drinking coffee and get some sleep it will moderate." Just that simple mindgame helped me focus on the task at hand. The problem comes when I clean up my act and it's still this bad. I can no longer blame it on something temporary and start panicking that it's the new-normal.
COPING ON HARD-MODE
I take it as a badge of honor that I never bought a dedicated white-noise generator. When I'm dead tired I've always been able to fall asleep in a quiet room. I've rarely used sleeping pills. Again, this all comes from trying to present myself as if I don't really have a problem and don't have to seriously rearrange my life or call attention to the condition with the people around me (other than stuffing my ears when entering a noisy environment). This is where I feel I've reached a limit.
PERIPHERAL SYMPTOMS
In the last few years I've experienced downstrem impact from the tinnitus. Whether the tinnitus is the root cause or not, it certainly contributed. This has included two anxiety attacks that I perceived to be heart attacks and chronic bouts of pins and needles. My neck has also been a complete disaster area due in large part from having sat in front of a computer for 30 years. Wear and tear starts to accumulate when you get into your 40s. I've yo-yo dieted a few times and overtrained to the point of giving myself mild arthritis in my knees (worse on my right). The net effect of stress over a long period of time is bad on your overall health. I predicted some time ago that my life expectancy would be cut significantly short by the tinnitus and I just feel creeping mortality more than most my age. Luckily the pins and needles have gone away but the tinnitus and my overall emotional state is worse than ever.
GETTING BY
Despite all of these problems I've managed to clock 20 years as a web developer. I make good money. I had a nasty divorce and had to raise my daughter as a single dad. She's now a freshmen in college and I need to hang on as a breadwinner still in order to pay her way through. It would be difficult for someone my age who hasn't ascended into management to stay competitive with younger and younger peers. If you add in the tinnitus, it's even harder. Live would be a lot easier if I didn't have to hustle so much or worry about being put out to pasture for being too old. My personal life has been just a string of celibacy and disappointments. But at my current emotional state I feel strangely disinterested in romance. I feel my state of depression/anxiety is worse than ever and I am just barely functioning out of obligation to my daughter. I feel like I have no option but to start leaning on meds ala prozac, but they have a host of negative side-effects. In the meantime as I'm now empty nest I'm finding myself going out to drink far too often just to be among other people in a noisy enough environment to mask the T and get buzzed enough so that the stress level can come down. I'm also downing St. John's Wort pills like they're candy and drinking almost nothing but herbal teas like holy basil which are probably nothing but placebo. I put an order in for bioflavonoids but the general consensus is that it won't help.
WHERE TO NOW?
I am continuing to procrastinate and bargain over going to an ENT even though I'm in the Boston area where the expertise is, but if nothing changes I'm going to have to. Just running through the medical gauntlet is a huge time investment when I have a job that has poor work/life balance. It was difficult to take the appointments I made for my pins and needles without giving the impression to my boss that I was a liability. I also managed to get in and out of the ER with my anxiety attacks without my employer knowing what happened. Having to do the daily grind forces me to stop obsessing on the tinnitus and yet at the same time just exchanges one form of stress with another. I'm aware that there are techniques proven to help, most notably the TRT.
The reason why I have shied away from groups like these is that simply intellectualizing the problem is enough to depress me further. What's been more effective is to fill my life with activities. It helps to know I've accomplished something. The problem is that pride in accomplishment is not quite the same thing as joy or relaxation. The tinnitus as it is now is reaching a debilitating state where it's almost impossible to feel pleasure. I went to A Star is Born and the tinnitus is there as I'm trying to focus on a movie about a guy with tinnitus who winds up committing suicide at the end. That was rather surreal.
In theory, finding support with other sufferers would be helpful, but I've read some of the threads and there is sort of two types of people, those who are seeking miracle cures with an open mind and those who feel their duty is to say again and again that nothing will work. There's the reality of the situation and there's a way of looking at things. I believe that dangling the carrot in the future, even if it is, objectively speaking, a false-hope, can be a useful coping mechanism since we all are on this earth for a limited time and it makes no sense wasting it wallowing in despair. Easier said than done, though, right?
Anyway, let me know how my story lines up with yours.
The suffering that we go through is invisible to the people around us. Very early on I chose to keep this a secret so as not to have people look at me as disabled/damaged. There was also a huge element of guilt/shame in not taking proper care of my hearing, something I still wrestle with as I assess what kinds of things I expose myself to (more on that later). I'm also shy and introverted by nature so I'm not the type of person to seek out support groups. The net result is that this has been a monkey on my back, by far the #1 challenge in my life to deal with.
So here's the personal biography and I'll try to keep it entertaining enough to be worth reading through.
HOW I GOT IT
Like a lot of kids in the 80s, I picked up guitar. I was into hard rock / heavy metal. It was around that time that Pete Townshend "came out" with his tinnitus story and there was a growing awareness not to be stupid and wear earplugs and concerts and the like. I had been to at least one concert that produced temporary ringing, but it went away. I never used to play guitar to the point of causing ringing. I only had a small practice amp but it was capable of producing feedback which I played with a bit similar to Neil Young's feedback album (which caused HIS tinnitus). But that's not what did it.
I was a senior in college and signed up for a talent show. I formed a one off band for the performance and did a rehearsal session in a basement with brick walls and a live drummer. I remember how sharp and annoying the snare and the cymbals were, but I chose to play through it. I had no ear protection and didn't even try to stuff tissues or anything else in my ears. After the session my ears were ringing. Because of my previous experience with ringing after a concert, I felt that things would clear up overnight. However, the next morning they were still ringing. That next morning I was already starting to panic and guilt myself over how stupid I was, similar to someone feelign guilty for having cut off a limb like Tony Iommi of Black Sabbath who lost the tips of his fingers. Nevertheless I initially hoped that if I just gave it another day or two it would go away, but of course it never did. In addition to that, I first noticed hyperacusis when my ears felt pain dealing with the hydraulic brakes from a bus.
MY INITIAL REACTION
All this was happening right at the final days of my college years which is supposed to be the peak of your life. Once it finally dawned on me that this was permanent, I felt, if not suicidal, pretty damn close, as I felt that the quality of the rest of my life would be ruined.
What people who don't have tinnitus don't understand is how it has a rippling effect through the rest of your life. It impacts your emotional health and that impacts how you perform in life, your behaviors, your life-decisions, your motivation. Everything becomes a struggle. Peace and relaxation become unattainable. The highs are few and far between and dulled. The lows deepened.
THE SECRET STRUGGLE
As I said in the opener, my initial impulse was to keep this a secret. It took several years before I even told my family about this. The internet was just coming online and I did enough research to know that there wasn't a cure. I therefore decided never to bother going to the doctor. Instead I just improvised my own coping mechanisms. I played around with some vitamins which just gave me hot flashes and little else. But mostly I evolved a strategy of getting myself into natural environments with masking background noise and finding things to mentally focus on to get my mind off of the ringing. It's been so long that I don't remember exactly how severe the tinnitus was at onset. I do recall being in a soundproof studio in the early days and how excruciating it was. That's when I realized how much I just sort of always sort of gravitated towards environmental noise sources, whether it was an air-conditioner or fan in the summer or a desktop computer fan, TV, and so on.
RELYING ON THE HOPE CYCLE
The upside of getting tinnitus when you're young is you've got enough life left to lead that you can pin your hopes on a cure or better treatment coming online that would allow me to put that chapter of my life behind me and finally REALLY live. For instance, in the 90s I remember when figures like Tony Randal and William Shatner came out as being tinnitus sufferers which made it feel like more of a widespread problem than just foolish rockers blowing out their ears. The 90s were a time of big technological strides and I just thought for sure something would come around. I didn't follow day to day research. I just sort of put that hope in my pocket like a carrot to help me get by day to day. It's a lot easier doing that when you're in your mid 20s than your 40s, that's for sure.
RECENT SETBACKS
A big part of tinnitus anxiety comes from fearing that doing X, Y, or Z will make things worse. I only went to a few shows since I got tinnitus but made sure I wore earplugs. Nevertheless, even that is no guarantee as they're so damn loud. Each time afterwards I would be paranoid that I made things worse. Whether I did or not is anyone's guess. But I was aware that even just raw aging alone could make things worse. Two things happened most recently that I suspect has actually made things worse. One was I was stuck in the subway when a fire alarm went off. Another was I went to an IMAX theater to see the newest Mission Impossible and they had this behind the seat speaker system. The latter in particular is what I think damaged my left ear more which has always been the worse ear. I was wearing tissues which is what I normally do in movies as foam earplugs block things too much, but despite that I remember feeling a very distinct twinge in my left ear during an explosion. Since then I now hear a much higher frequency flutter in my left ear. It's the first time I've noticed anything that isn't a pure constant tone and it's above the frequency that normal white noise normally masks. It's that higher tone as well as reduced overall hearing in my left ear that is making it especially difficult to use my existing coping techniques. The overall volume of the tinnitus seems a lot higher than ever now. It's not the first time I've had a spike but this has been going on for a few months now and doesn't want to let up.
Trying to date the progression of the tinnitus makes it hard to connect cause and effect. For a long time I was hooked on coffee and was chronic sleep deprived. I focused on hobbies late at night. The tinnitus was bad but I always attributed it to the coffee. Blaming tinnitus on a temporary habit like that is in itself a coping mechanism. The thought process goes "Oh, it's just the caffeine. If I stop drinking coffee and get some sleep it will moderate." Just that simple mindgame helped me focus on the task at hand. The problem comes when I clean up my act and it's still this bad. I can no longer blame it on something temporary and start panicking that it's the new-normal.
COPING ON HARD-MODE
I take it as a badge of honor that I never bought a dedicated white-noise generator. When I'm dead tired I've always been able to fall asleep in a quiet room. I've rarely used sleeping pills. Again, this all comes from trying to present myself as if I don't really have a problem and don't have to seriously rearrange my life or call attention to the condition with the people around me (other than stuffing my ears when entering a noisy environment). This is where I feel I've reached a limit.
PERIPHERAL SYMPTOMS
In the last few years I've experienced downstrem impact from the tinnitus. Whether the tinnitus is the root cause or not, it certainly contributed. This has included two anxiety attacks that I perceived to be heart attacks and chronic bouts of pins and needles. My neck has also been a complete disaster area due in large part from having sat in front of a computer for 30 years. Wear and tear starts to accumulate when you get into your 40s. I've yo-yo dieted a few times and overtrained to the point of giving myself mild arthritis in my knees (worse on my right). The net effect of stress over a long period of time is bad on your overall health. I predicted some time ago that my life expectancy would be cut significantly short by the tinnitus and I just feel creeping mortality more than most my age. Luckily the pins and needles have gone away but the tinnitus and my overall emotional state is worse than ever.
GETTING BY
Despite all of these problems I've managed to clock 20 years as a web developer. I make good money. I had a nasty divorce and had to raise my daughter as a single dad. She's now a freshmen in college and I need to hang on as a breadwinner still in order to pay her way through. It would be difficult for someone my age who hasn't ascended into management to stay competitive with younger and younger peers. If you add in the tinnitus, it's even harder. Live would be a lot easier if I didn't have to hustle so much or worry about being put out to pasture for being too old. My personal life has been just a string of celibacy and disappointments. But at my current emotional state I feel strangely disinterested in romance. I feel my state of depression/anxiety is worse than ever and I am just barely functioning out of obligation to my daughter. I feel like I have no option but to start leaning on meds ala prozac, but they have a host of negative side-effects. In the meantime as I'm now empty nest I'm finding myself going out to drink far too often just to be among other people in a noisy enough environment to mask the T and get buzzed enough so that the stress level can come down. I'm also downing St. John's Wort pills like they're candy and drinking almost nothing but herbal teas like holy basil which are probably nothing but placebo. I put an order in for bioflavonoids but the general consensus is that it won't help.
WHERE TO NOW?
I am continuing to procrastinate and bargain over going to an ENT even though I'm in the Boston area where the expertise is, but if nothing changes I'm going to have to. Just running through the medical gauntlet is a huge time investment when I have a job that has poor work/life balance. It was difficult to take the appointments I made for my pins and needles without giving the impression to my boss that I was a liability. I also managed to get in and out of the ER with my anxiety attacks without my employer knowing what happened. Having to do the daily grind forces me to stop obsessing on the tinnitus and yet at the same time just exchanges one form of stress with another. I'm aware that there are techniques proven to help, most notably the TRT.
The reason why I have shied away from groups like these is that simply intellectualizing the problem is enough to depress me further. What's been more effective is to fill my life with activities. It helps to know I've accomplished something. The problem is that pride in accomplishment is not quite the same thing as joy or relaxation. The tinnitus as it is now is reaching a debilitating state where it's almost impossible to feel pleasure. I went to A Star is Born and the tinnitus is there as I'm trying to focus on a movie about a guy with tinnitus who winds up committing suicide at the end. That was rather surreal.
In theory, finding support with other sufferers would be helpful, but I've read some of the threads and there is sort of two types of people, those who are seeking miracle cures with an open mind and those who feel their duty is to say again and again that nothing will work. There's the reality of the situation and there's a way of looking at things. I believe that dangling the carrot in the future, even if it is, objectively speaking, a false-hope, can be a useful coping mechanism since we all are on this earth for a limited time and it makes no sense wasting it wallowing in despair. Easier said than done, though, right?
Anyway, let me know how my story lines up with yours.
