I've been lurking here since I tinnitus entered my life at age 35 in March 2015. And like many people, I promised myself that when I felt well enough I would tell my story. So here goes.
How I damaged my hearing and how my tinnnitus started
With tinnitus, these are two separate questions and only sometimes do they have the same answer. In my case, they didn't.
I'd always disliked loud noise — clubs, bars etc — and would never even have dreamed of attending a loud rock concert. I was generally someone who revelled in peace and quiet. But I had a blind spot — listening to music on headphones (music is a big interest of mine and actually part of making my living). It was never earblasting but it was loud and I believe it cumulatively had an effect, along with some apparent age-related hearing loss. In any case, unbeknownst to me at the time of tiinnitus onset, I had a mild high-frequency hearing loss on a desceding slope. Were it not for tinnitus, I'd probably still be unaware of it.
In terms of how my tinnitus started, it was terrifyingly trivial. I got some water in my ear when swimming — it lodged behind some impacted wax and I couldn't shake it out. A few hours later it had evaporated but by then I had tinntus in that ear. About a week later the other ear started up in sympathy — my tinnitus was now in stereo and any hope this was a temporary reaction to the water in my ear was out the window (there was never any water in the other ear).
How I reacted in the beginning
Like most people, my response to tinnitus was a mild sense of alarm initially — a waiting for it to pass and a creeping dread that it wouldn't. And then I looked it up and realised that the chances are it wasn't going anywhere. Mild alarm elevated to full blown panic. A month in I paid to see a private audiologist rather than waiting 4 months on the NHS. She tested my hearing, confirmed hearing loss and told me about tinnitus. She was very good and sympathetic, but the hearing loss result confirmed the permance of tinnitus in my mind and panic turned to depression.
My thoughts on how and why I reacted so strongly are below:
1) For many of us (though actually not in my case) tinnitus represents perhaps the first (probable) permanent loss we will encounter in our health. I think that alone can trigger a lot of negative emotions and worry, particularly at a young age — it's something that takes time to come to terms with, particularly given the often mundane things that lead to it — I think this can evoke a great sense of fragility and insecurity.
2) Lack of sleep. While I never had many probems getting to sleep, I would wake up an hour or so later startled by my tinnitus and drift through the night in various states of very shallow and anxious sleep. The cumulative effect of these type of sleep disturbances on mood and outlook is huge. I never cried so much in my life as in those early months, and it was much more to do with poor sleep than tinnitus.
3) Tinnitus in its early days I would describe as 'thought pollution'. Every pleasant thought I had, every experience I wanted to enjoy was poisoned by the sound. No matter what else went well, it was offset by the tinnitus. The gradual disippation of that 'thought pollution' is basically a large part of the experience of habituation as far as I can tell.
What I'd reccommend to get through the early stages
I'm not sure there's any way of getting around the toughness of the early stages, but here's my not-terribly-original advice:
1) Make acceptance the goal. I did this early on, and I'm not going to say it made things feel much better, but it's a goal within your control to meet to some extent or least to take steps in that direction. I understand it might not possible for everyone, but for me, it was important. I'll confess I did have my moments of investing emotionally a little in Auris trials etc, but I think I knew at the time this was actually a blind alley — and so it seems to have proved.
2) Sleeping is coping — if you can't sleep, you can't cope. I found an antihistamine — phenegan — did the trick for me, and I would encourage people to do what's necessary to sleep, even if, like me, you are highly resistant to medicating. It was essential to gradually rebuilding my outlook. Knowing I could sleep if I need to by taking it was a big help — it stopped me being anxious about not sleeping, which becomes a big problem after prolonged sleep disturbance; you begin to fear putting your head down on the pillow.
I also used white noise — in my case, I found it help to reduce the sound 'contrast' upon waking in the middle of the night in total slience.
3) Don't put your life on hold. One smart thing I 'got' early on was carrying on in whatever way you can is important. I didn't stop work or life activities generally -- I struggled on. It was difficult, but in the early days the only peace I did get was in moments of deep concentration on other things, so throwing yourself into anything that offers the opportunity for that is a good idea. My one big mistake in this area was temporarily giving up music — because it compounded my sense of loss, and it was unnecessary — though I no longer use headphones very much and am very cautious when I do.
4) See a hearing therapist. Doctors can't do much for tinnitus other than go through the mostly useless motions that they do, but an understanding and sympathetic listener can be very helpful. If you're exceptionally lucky, your doctor will be that person. My doctor certainly wasn't, but she referrered me to a hearing therapist who was actually very helpful for me to talk through my experiences with.
5) Try to discipline your thoughts. It sounds obvious, but I can't emphasise enough how reading bad experiences on the internet bolstered all my cognitive distortions about tinnitus and made them much more difficult to get over — I began to believe my time as a high functioning individual was over. That was nonsense, but I really did believe it for a while, so it's important to try and discipline your thoughts, hard as it may be.
When it started to get better
After the first two months, depression would ease for a few days at a time. It gradually became a week, then two weeks. Emotionally, it was a very up-and-down experience. But the trend was in the right direction. About five months I got another temporary health problem. It passed thank goodness, but at the end of that month I realised my preoccupation with that had basically meant that I'd spent very little time thinking about tinnitus. In a weird way, this was quite a reassuring revelation. So the improvement was gradual — but it did happen. And as the sleep got better, the depression got better. And as the moods got better, tinnitus seemed less and less of a burden. By seven months in, I was in good shape and things continued to improve.
When I'm at now
At 14 months in, I am probably as habituated as I'm going to get.
Here's what I'd say today about my tinnitus — and it's pretty much I guess what I'd have wanted to hear in the early stages (well — short of 'it'll go completely'):
> Tinnitus is virtually no impediment to my life at this stage. It doesn't stop me doing anything, other than those things that are sensible precautions to protect my hearing.
> It no longer causes me distress, and I'm no longer depressed about it. My outlook on life has returned to normal as have my thoughts for the most part. Of course I take nothing for granted — it could get worse. But then any number of things worse than tinnitus could also happen.
> I notice my tinnitus a good few times a day — it basically depends on how distracted I am. On a busy day at work or out for leisure it can be hours or a half day without noticing it. At home on my own in the slience, it's more frequent than that for sure. But my thoughts rarely alight on it for long — it's there, and after a while, particualrly when the panic and depression is past, there's not much to be said or thought about it, so the brain moves on.
> I no longer have problem sleeping. I play white noise while I sleep, but to be honest at this point, I think that's more habit than anything else.
> Tinnitus can still distract me, particularly the transient 30-odd second spikes that so many of us experience from time to time. My general reaction to these has gone down a lot, but they still can be alarming.
I think anyone who has struggled with tinnitus will feel a greater sense of fragility in themselves — I certainly do, and I'm not going to say there aren't times I wish it wasn't there -- or that I don't fear it worsening.
But the important thing to know is this. In the early months, tinnitus loomed as large and terrifying in my life as anything ever has. It is now a small, incidental detail of my back-to-normal life; I don't spend much time thinking about it or wishing it away; my sense of wellbeing has returned and I am living my life as before. To have known I would write that 14 months down the line would have been a huge relief to me in March last year, so I hope reading it from someone else can go some way to helping others in the position I was in then.
Thanks for reading.
Tim
How I damaged my hearing and how my tinnnitus started
With tinnitus, these are two separate questions and only sometimes do they have the same answer. In my case, they didn't.
I'd always disliked loud noise — clubs, bars etc — and would never even have dreamed of attending a loud rock concert. I was generally someone who revelled in peace and quiet. But I had a blind spot — listening to music on headphones (music is a big interest of mine and actually part of making my living). It was never earblasting but it was loud and I believe it cumulatively had an effect, along with some apparent age-related hearing loss. In any case, unbeknownst to me at the time of tiinnitus onset, I had a mild high-frequency hearing loss on a desceding slope. Were it not for tinnitus, I'd probably still be unaware of it.
In terms of how my tinnitus started, it was terrifyingly trivial. I got some water in my ear when swimming — it lodged behind some impacted wax and I couldn't shake it out. A few hours later it had evaporated but by then I had tinntus in that ear. About a week later the other ear started up in sympathy — my tinnitus was now in stereo and any hope this was a temporary reaction to the water in my ear was out the window (there was never any water in the other ear).
How I reacted in the beginning
Like most people, my response to tinnitus was a mild sense of alarm initially — a waiting for it to pass and a creeping dread that it wouldn't. And then I looked it up and realised that the chances are it wasn't going anywhere. Mild alarm elevated to full blown panic. A month in I paid to see a private audiologist rather than waiting 4 months on the NHS. She tested my hearing, confirmed hearing loss and told me about tinnitus. She was very good and sympathetic, but the hearing loss result confirmed the permance of tinnitus in my mind and panic turned to depression.
My thoughts on how and why I reacted so strongly are below:
1) For many of us (though actually not in my case) tinnitus represents perhaps the first (probable) permanent loss we will encounter in our health. I think that alone can trigger a lot of negative emotions and worry, particularly at a young age — it's something that takes time to come to terms with, particularly given the often mundane things that lead to it — I think this can evoke a great sense of fragility and insecurity.
2) Lack of sleep. While I never had many probems getting to sleep, I would wake up an hour or so later startled by my tinnitus and drift through the night in various states of very shallow and anxious sleep. The cumulative effect of these type of sleep disturbances on mood and outlook is huge. I never cried so much in my life as in those early months, and it was much more to do with poor sleep than tinnitus.
3) Tinnitus in its early days I would describe as 'thought pollution'. Every pleasant thought I had, every experience I wanted to enjoy was poisoned by the sound. No matter what else went well, it was offset by the tinnitus. The gradual disippation of that 'thought pollution' is basically a large part of the experience of habituation as far as I can tell.
What I'd reccommend to get through the early stages
I'm not sure there's any way of getting around the toughness of the early stages, but here's my not-terribly-original advice:
1) Make acceptance the goal. I did this early on, and I'm not going to say it made things feel much better, but it's a goal within your control to meet to some extent or least to take steps in that direction. I understand it might not possible for everyone, but for me, it was important. I'll confess I did have my moments of investing emotionally a little in Auris trials etc, but I think I knew at the time this was actually a blind alley — and so it seems to have proved.
2) Sleeping is coping — if you can't sleep, you can't cope. I found an antihistamine — phenegan — did the trick for me, and I would encourage people to do what's necessary to sleep, even if, like me, you are highly resistant to medicating. It was essential to gradually rebuilding my outlook. Knowing I could sleep if I need to by taking it was a big help — it stopped me being anxious about not sleeping, which becomes a big problem after prolonged sleep disturbance; you begin to fear putting your head down on the pillow.
I also used white noise — in my case, I found it help to reduce the sound 'contrast' upon waking in the middle of the night in total slience.
3) Don't put your life on hold. One smart thing I 'got' early on was carrying on in whatever way you can is important. I didn't stop work or life activities generally -- I struggled on. It was difficult, but in the early days the only peace I did get was in moments of deep concentration on other things, so throwing yourself into anything that offers the opportunity for that is a good idea. My one big mistake in this area was temporarily giving up music — because it compounded my sense of loss, and it was unnecessary — though I no longer use headphones very much and am very cautious when I do.
4) See a hearing therapist. Doctors can't do much for tinnitus other than go through the mostly useless motions that they do, but an understanding and sympathetic listener can be very helpful. If you're exceptionally lucky, your doctor will be that person. My doctor certainly wasn't, but she referrered me to a hearing therapist who was actually very helpful for me to talk through my experiences with.
5) Try to discipline your thoughts. It sounds obvious, but I can't emphasise enough how reading bad experiences on the internet bolstered all my cognitive distortions about tinnitus and made them much more difficult to get over — I began to believe my time as a high functioning individual was over. That was nonsense, but I really did believe it for a while, so it's important to try and discipline your thoughts, hard as it may be.
When it started to get better
After the first two months, depression would ease for a few days at a time. It gradually became a week, then two weeks. Emotionally, it was a very up-and-down experience. But the trend was in the right direction. About five months I got another temporary health problem. It passed thank goodness, but at the end of that month I realised my preoccupation with that had basically meant that I'd spent very little time thinking about tinnitus. In a weird way, this was quite a reassuring revelation. So the improvement was gradual — but it did happen. And as the sleep got better, the depression got better. And as the moods got better, tinnitus seemed less and less of a burden. By seven months in, I was in good shape and things continued to improve.
When I'm at now
At 14 months in, I am probably as habituated as I'm going to get.
Here's what I'd say today about my tinnitus — and it's pretty much I guess what I'd have wanted to hear in the early stages (well — short of 'it'll go completely'):
> Tinnitus is virtually no impediment to my life at this stage. It doesn't stop me doing anything, other than those things that are sensible precautions to protect my hearing.
> It no longer causes me distress, and I'm no longer depressed about it. My outlook on life has returned to normal as have my thoughts for the most part. Of course I take nothing for granted — it could get worse. But then any number of things worse than tinnitus could also happen.
> I notice my tinnitus a good few times a day — it basically depends on how distracted I am. On a busy day at work or out for leisure it can be hours or a half day without noticing it. At home on my own in the slience, it's more frequent than that for sure. But my thoughts rarely alight on it for long — it's there, and after a while, particualrly when the panic and depression is past, there's not much to be said or thought about it, so the brain moves on.
> I no longer have problem sleeping. I play white noise while I sleep, but to be honest at this point, I think that's more habit than anything else.
> Tinnitus can still distract me, particularly the transient 30-odd second spikes that so many of us experience from time to time. My general reaction to these has gone down a lot, but they still can be alarming.
I think anyone who has struggled with tinnitus will feel a greater sense of fragility in themselves — I certainly do, and I'm not going to say there aren't times I wish it wasn't there -- or that I don't fear it worsening.
But the important thing to know is this. In the early months, tinnitus loomed as large and terrifying in my life as anything ever has. It is now a small, incidental detail of my back-to-normal life; I don't spend much time thinking about it or wishing it away; my sense of wellbeing has returned and I am living my life as before. To have known I would write that 14 months down the line would have been a huge relief to me in March last year, so I hope reading it from someone else can go some way to helping others in the position I was in then.
Thanks for reading.
Tim
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