Our final blogs have been posted, but we shall keep the blog open for a while so please feel free to keep contributing if you wish to.
I’d like to say a very big thank you to our three bloggers, Kate, John and Gemma, who have put a considerable amount of time and effort into producing their blogs and joining in the chat. I hope their tinnitus settles down again after all the attention it’s been getting!
I have been reading the postings with great interest and I guess the week has confirmed what I sort of knew, that tinnitus is a very individual experience. John for example has told us that whilst he relishes being fit, exercise temporarily cranks up the volume of his tinnitus, whereas Nick H describes exercise as a ‘Big T reliever’. Pleasant though experiments with red wine may be, the results remain inconclusive about its impact on tinnitus. At least, hopefully, research funded by Deafness Research UK will in due course ease the debate about caffeine by revealing whether it aggravates tinnitus or not.
I hope our bloggers have given you some ideas on how to cope with your tinnitus. Further information is also available from Deafness Research UK. Just click onto our website: www.deafnessresearch.org.uk/?lid=3861. You can read more personal stories from people who live with tinnitus at: www.deafnessresearch.org.uk/?lid=2858.
Our helpline is open 9.00 a.m. to 5.00 p.m. Monday to Friday (a message can be left at other times) to answer specific questions about tinnitus. If our Information team cannot answer a question directly, we will refer it to one of our scientific or medical advisers. Contact the helpline on telephone 0808 808 2222.
Alternatively email info@deafnessresearch.org.uk or click the ‘ask a question’ option at the top of our website: www.deafnessresearch.org.uk
For certain, we need better treatments for tinnitus and indeed, because of its complexity, we are likely to require a range of solutions rather than a single cure. I think it's clear from our blog that more research into tinnitus is an urgent priority. Supporting more and high quality research is a key goal for Deafness Research UK.
Geraldine Oliver
Head of Information
Deafness Research UK
Monday, 16 February 2009
Sunday, 15 February 2009
Time to refocus elsewhere
So, it's 2 days since my last blog. Why do I feel as if I'm going to confession? But if there's anything to confess, it's that I've had a great couple of days. The last thing I wanted to do was to sit down and write about tinnitus. The last thing I wanted to do was concentrate on something that I don't like. Something that I try to avoid thinking about if at all possible.
This week we've all been focussing on our condition, while writing about how we distract ourselves from it. That has to be the key to coping - for me at least - while an accessible cure is still such a long way off.
Aha - there it is, for the first time since I got up this morning - my little friend and yours, the high pitched squeak.
About a year or so ago I was lucky enough to meet various people who are working on finding out more about tinnitus, and possible treatments. I spoke to professionals who work in areas from cognitive therapy to neurosurgery. I met a lady who was fortunate enough to have her tinnitus 'turned off' following surgery. I spoke to a physiotherapist who surprised me with his instant insights into how my emotions played a part in my tinnitus. I said at the time that I felt that I lived in a treatment desert, with little help that I could access locally.
If more people could access simple therapies for managing their tinnitus, to help them address the emotional issues and negative feelings that come with the condition, then I'm sure there would be a massive impact on the quality of their lives.
I've already said in this blog that I'm lucky enough to have come to terms with tinnitus. It rarely depresses me any more. I know there are many thousands of people who have not reached this position of acceptance and relative peace. Perhaps some will be encouraged to go out and seek help. If you do, I wish you luck!
This week we've all been focussing on our condition, while writing about how we distract ourselves from it. That has to be the key to coping - for me at least - while an accessible cure is still such a long way off.
Aha - there it is, for the first time since I got up this morning - my little friend and yours, the high pitched squeak.
About a year or so ago I was lucky enough to meet various people who are working on finding out more about tinnitus, and possible treatments. I spoke to professionals who work in areas from cognitive therapy to neurosurgery. I met a lady who was fortunate enough to have her tinnitus 'turned off' following surgery. I spoke to a physiotherapist who surprised me with his instant insights into how my emotions played a part in my tinnitus. I said at the time that I felt that I lived in a treatment desert, with little help that I could access locally.
If more people could access simple therapies for managing their tinnitus, to help them address the emotional issues and negative feelings that come with the condition, then I'm sure there would be a massive impact on the quality of their lives.
I've already said in this blog that I'm lucky enough to have come to terms with tinnitus. It rarely depresses me any more. I know there are many thousands of people who have not reached this position of acceptance and relative peace. Perhaps some will be encouraged to go out and seek help. If you do, I wish you luck!
Friday, 13 February 2009
Thursday 12th/Friday 13th February
I didn't get round to posting my blog entry yesterday, as it was just an incredibly busy day.
I was writing last night (gone midnight), and realised that was the first time all day I'd noticed my tinnitus. I guess that was partly due to the fact I was just on the go all day, but also that I hadn't had a chance to think about this blog!
This week has really made me think about how perception affects my tinnitus. Yesterday, I hadn’t thought about it, so although I’m sure it was there I didn't notice it at all. Now I’m writing about it, I can notice my tinnitus again but after a great Tai Chi session last night it’s not particularly bothering me.
So, I wonder is keeping my mind occupied a key to managing my tinnitus? Although, if I am keeping busy with the purpose of minimising my tinnitus will I actually still be aware of it? So many questions, and I know there are lots other factors which I can’t always account for, nor have control over. My tinnitus always seems so much more evident when I’m tired, stressed, upset or agitated and these are states I can’t always avoid.
For me, identifying and (excuse me if this sounds ridiculous) embracing my tinnitus actually helps. Trying to ignore it or wishing it away just doesn't work, and only makes me more stressed and aware of it.
It's only really as I've been writing this blog this week that I have realised this, so as well as hopefully giving people a small insight into my experiences I'm very grateful that I have also taken a lot of positives from it too. And as hard as I know it can be sometimes, staying positive as much as you can is just vital in not letting this terrible condition get the better of you.
I was writing last night (gone midnight), and realised that was the first time all day I'd noticed my tinnitus. I guess that was partly due to the fact I was just on the go all day, but also that I hadn't had a chance to think about this blog!
This week has really made me think about how perception affects my tinnitus. Yesterday, I hadn’t thought about it, so although I’m sure it was there I didn't notice it at all. Now I’m writing about it, I can notice my tinnitus again but after a great Tai Chi session last night it’s not particularly bothering me.
So, I wonder is keeping my mind occupied a key to managing my tinnitus? Although, if I am keeping busy with the purpose of minimising my tinnitus will I actually still be aware of it? So many questions, and I know there are lots other factors which I can’t always account for, nor have control over. My tinnitus always seems so much more evident when I’m tired, stressed, upset or agitated and these are states I can’t always avoid.
For me, identifying and (excuse me if this sounds ridiculous) embracing my tinnitus actually helps. Trying to ignore it or wishing it away just doesn't work, and only makes me more stressed and aware of it.
It's only really as I've been writing this blog this week that I have realised this, so as well as hopefully giving people a small insight into my experiences I'm very grateful that I have also taken a lot of positives from it too. And as hard as I know it can be sometimes, staying positive as much as you can is just vital in not letting this terrible condition get the better of you.
Thursday, 12 February 2009
Do you cough when you put a cotton bud in your ear?
I do.
My wife laughs at me a lot when I do this. I'm sure it's because I'm going in too far - but it's a legacy of anality that I went through years ago when I DID obsess about my ears. I just wanted them to be clean - I was sure it was excess ear-wax that was causing the ringing in my ears (this is before it dawned on me that it was tinnitus).
So I'd poke away with a cotton bud ('cue-tip') trying to get the last bits of wax out of there. I'd put in drops to try to dissolve the wax - and on one more stupid occasion, emptied the reservoir from those drops, filled it with warm water, and started squirting and sucking water in and out of my ear-canal so much I thought my brain would pop out the other ear!
Luckily this is the only home 'remedy' I ever tried when it came to my ears. Obviously I still try to keep them clean, and I'll admit that sometimes I do still go a little too far (not on purpose) and release a little cough - followed by a little laugh at how stupid I was (am).
As a follow on to Gemma's post, my lovely wife came home today with a story of how the person on the train three rows away was playing her iPod so loud that she could tell all of the tunes that were playing (the title of this post was almost 'Beyonce in tinnitus shocker...') - and that she felt like getting out of her seat and warning the girl that she'd end up with tinnitus. But, this being Glasgow, two things would have happened had she done so - 1) The girl wouldn't have taken it too well, and who knows what might have happened - and 2) Someone would have stolen her seat as she stood up. Sensibly, she just came home quietly and told me instead.
My view on the iPod/Mp3/walkman thing is that it's not the equipment that's dangerous - it's the people that use them. And I speak as someone who WAS that idiot who'd turn up his walkman to full volume all the time.
Sure, there's lots of equipment out there that have an AVLS setting (Automatic Volume Limiter System) but there's ways around that, and, to be honest, it also gets in the way of normal listening. But rather than limit something, I think the key is to expand on something - education.
People need to know what damage they're doing to their ears when they listen to (let's just globally call all Mp3/walkmans etc) iPods. Music is incredible. It's emotional, it helps people get through the day, it relaxes them on a commute, it inspires them (I always found listening to music I loved right before a squash match would always make me play better) it calms people (I'd also listen in between games when I was about to lose it and start throwing things!) and it gives us a distraction from everyday life - we have alone time - it's ours - no one else is part of what we have at that moment. And as such, I think that plans to 'ban' the iPod are akin to most of the EU rulings about cucumbers, bananas, and calories on menus (I frankly don't want to know how many calories my creme brulee has!).
So, rather than ban it - educate. And that's why we're here.
Chances are, most of the visitors to this blog are people who are interested because they HAVE tinnitus - what we need to do is start letting people know that they'll probably develop it if they don't back of their listening/volume habits a bit. What it needs? That's the big question.
I ask myself sometimes what it would have taken to change the listening habits of that 14 year old boy who was sure he was invincible, sure he'd never get tinnitus, was something special, it wouldn't hurt me would it.... etc. What would I have responded to? What would you respond to?
I've got a great advert in mind if anyone cares to donate several tens of thousand to the cause...
My wife laughs at me a lot when I do this. I'm sure it's because I'm going in too far - but it's a legacy of anality that I went through years ago when I DID obsess about my ears. I just wanted them to be clean - I was sure it was excess ear-wax that was causing the ringing in my ears (this is before it dawned on me that it was tinnitus).
So I'd poke away with a cotton bud ('cue-tip') trying to get the last bits of wax out of there. I'd put in drops to try to dissolve the wax - and on one more stupid occasion, emptied the reservoir from those drops, filled it with warm water, and started squirting and sucking water in and out of my ear-canal so much I thought my brain would pop out the other ear!
Luckily this is the only home 'remedy' I ever tried when it came to my ears. Obviously I still try to keep them clean, and I'll admit that sometimes I do still go a little too far (not on purpose) and release a little cough - followed by a little laugh at how stupid I was (am).
As a follow on to Gemma's post, my lovely wife came home today with a story of how the person on the train three rows away was playing her iPod so loud that she could tell all of the tunes that were playing (the title of this post was almost 'Beyonce in tinnitus shocker...') - and that she felt like getting out of her seat and warning the girl that she'd end up with tinnitus. But, this being Glasgow, two things would have happened had she done so - 1) The girl wouldn't have taken it too well, and who knows what might have happened - and 2) Someone would have stolen her seat as she stood up. Sensibly, she just came home quietly and told me instead.
My view on the iPod/Mp3/walkman thing is that it's not the equipment that's dangerous - it's the people that use them. And I speak as someone who WAS that idiot who'd turn up his walkman to full volume all the time.
Sure, there's lots of equipment out there that have an AVLS setting (Automatic Volume Limiter System) but there's ways around that, and, to be honest, it also gets in the way of normal listening. But rather than limit something, I think the key is to expand on something - education.
People need to know what damage they're doing to their ears when they listen to (let's just globally call all Mp3/walkmans etc) iPods. Music is incredible. It's emotional, it helps people get through the day, it relaxes them on a commute, it inspires them (I always found listening to music I loved right before a squash match would always make me play better) it calms people (I'd also listen in between games when I was about to lose it and start throwing things!) and it gives us a distraction from everyday life - we have alone time - it's ours - no one else is part of what we have at that moment. And as such, I think that plans to 'ban' the iPod are akin to most of the EU rulings about cucumbers, bananas, and calories on menus (I frankly don't want to know how many calories my creme brulee has!).
So, rather than ban it - educate. And that's why we're here.
Chances are, most of the visitors to this blog are people who are interested because they HAVE tinnitus - what we need to do is start letting people know that they'll probably develop it if they don't back of their listening/volume habits a bit. What it needs? That's the big question.
I ask myself sometimes what it would have taken to change the listening habits of that 14 year old boy who was sure he was invincible, sure he'd never get tinnitus, was something special, it wouldn't hurt me would it.... etc. What would I have responded to? What would you respond to?
I've got a great advert in mind if anyone cares to donate several tens of thousand to the cause...
The Caffeine Question
Feeling really positive today. I had a very productive day at work - busy but not stressed - and I'm sitting in the kitchen with a glass of really good red wine and the radio playing.
This morning, once I'd read the post, checked my messages & prioritised the day’s jobs, it was time for a cuppa. My brew of choice is decaffeinated coffee, white, one sugar (I tried giving up the sugar but failed dismally).
Usually when I asked for decaff I get a sigh and a (jokey) comment like 'ooh, you like to be different do you?', or 'just to be awkward!'. And asking for decaff in a restaurant is like asking for tap water - a look of horror and a whispered conversation between the waiter and the maitre d', followed by 'I'm sorry madam, we don't do decaffeinated coffee here'. And even when I do get the coffee I ask for, I sometimes wonder whether it actually has caffeine in it, and they are serving me the ordinary stuff just so they can sell me an expensive coffee.
Last week, for the first time, someone at work asked me why I only drink decaffeinated coffee – the usual assumption is that the normal stuff stops me from sleeping. I suppose not being kept awake by caffeine is a good thing, as I already have my Tinnitus to cope with at night. I actually do it because someone once told me that caffeine can aggravate tinnitus, although I’ve found out since then that no-one’s proved it (yet). Judging by the empty jar of decaff coffee at work it looks like I’ve started a bit of a trend, and I’ve noticed other people asking for decaff drinks.
I wonder, do they have Tinnitus too?
This morning, once I'd read the post, checked my messages & prioritised the day’s jobs, it was time for a cuppa. My brew of choice is decaffeinated coffee, white, one sugar (I tried giving up the sugar but failed dismally).
Usually when I asked for decaff I get a sigh and a (jokey) comment like 'ooh, you like to be different do you?', or 'just to be awkward!'. And asking for decaff in a restaurant is like asking for tap water - a look of horror and a whispered conversation between the waiter and the maitre d', followed by 'I'm sorry madam, we don't do decaffeinated coffee here'. And even when I do get the coffee I ask for, I sometimes wonder whether it actually has caffeine in it, and they are serving me the ordinary stuff just so they can sell me an expensive coffee.
Last week, for the first time, someone at work asked me why I only drink decaffeinated coffee – the usual assumption is that the normal stuff stops me from sleeping. I suppose not being kept awake by caffeine is a good thing, as I already have my Tinnitus to cope with at night. I actually do it because someone once told me that caffeine can aggravate tinnitus, although I’ve found out since then that no-one’s proved it (yet). Judging by the empty jar of decaff coffee at work it looks like I’ve started a bit of a trend, and I’ve noticed other people asking for decaff drinks.
I wonder, do they have Tinnitus too?
How my tinnitus worsens: Lycra.
A slight day's delay for this post, as I wanted to see how yesterday's worsening of my tinnitus would affect my night.
There's three things I find that make my tinnitus worse. 1) Sustained loud noises (music being the most obvious one) 2) Alcohol 3) Exercise.
Numbers 1 and 2 weren't part of my day yesterday, but as the snow had thawed a little, I was able to get out on my bike and go for a nice 50 mile cycle through the Scottish hills.
Now, there's two reasons why my tinnitus gets worse when I cycle. The first is simply the sound of the wind rushing past my ears. This alone is enough to really amplify my tinnitus. I've read a couple of articles on bike-forums where people have asked if there's a link between the two - normally in terms of creating tinnitus, and the result is normally an unknown - but it does, for sure, amplify existing tinnitus.
I've got little wind-catchers on my bike helmet which are meant to deflect the sound of the air rushing past (though they're not great) and I have considered popping in some light ear-plugs to stop the sound, while still maintaining the sound of surrounding traffic - but the increase in my tinnitus is one side of my enjoyable cycles which can get quite frustrating.
However, I also find that just 'simple' aerobic exercise also makes things worse. It needs to be something that really gets the heart-rate up to near maximum (in my case, around 170-180bpm) - but I always find that after a run for example, the ringing in my ears is a lot worse (I don't run with an iPod by the way). In my days of playing league squash, it would get worse too - but I always put that down to the sound of the court (or my opponent's shouting!).
The thing is, there isn't really a way to deal with this. It's the catch-22 situation. Do I exercise and have ringing in my ears, and maybe even make it permanently worse? Or do I do nothing, become sedentary and unhealthy - and not live my life? I certainly choose the former, as it's in my nature, but the compromise does worry me sometimes.
For the purposes of this blog, I've been trying to add numeric values to the level of tinnitus I have. With 5 being my normal constant level, to give me latitude for increase or decrease.
Well, I left for my cycle at 3pm yesterday, and I was a 5. I came home, showered, lay in bed in the quiet, and can honestly say it was at least 7.5 - dropping to about 6 by the time I finally went to bed at 11pm. When I woke up this morning, all the various ringing tones in my ears were back to their normal '5' setting - so at least yesterday's run didn't do any lasting damage.
Purely for scientific reasons, I'll have some wine with dinner, either tonight or tomorrow - and report on that.... hic....
There's three things I find that make my tinnitus worse. 1) Sustained loud noises (music being the most obvious one) 2) Alcohol 3) Exercise.
Numbers 1 and 2 weren't part of my day yesterday, but as the snow had thawed a little, I was able to get out on my bike and go for a nice 50 mile cycle through the Scottish hills.
Now, there's two reasons why my tinnitus gets worse when I cycle. The first is simply the sound of the wind rushing past my ears. This alone is enough to really amplify my tinnitus. I've read a couple of articles on bike-forums where people have asked if there's a link between the two - normally in terms of creating tinnitus, and the result is normally an unknown - but it does, for sure, amplify existing tinnitus.
I've got little wind-catchers on my bike helmet which are meant to deflect the sound of the air rushing past (though they're not great) and I have considered popping in some light ear-plugs to stop the sound, while still maintaining the sound of surrounding traffic - but the increase in my tinnitus is one side of my enjoyable cycles which can get quite frustrating.
However, I also find that just 'simple' aerobic exercise also makes things worse. It needs to be something that really gets the heart-rate up to near maximum (in my case, around 170-180bpm) - but I always find that after a run for example, the ringing in my ears is a lot worse (I don't run with an iPod by the way). In my days of playing league squash, it would get worse too - but I always put that down to the sound of the court (or my opponent's shouting!).
The thing is, there isn't really a way to deal with this. It's the catch-22 situation. Do I exercise and have ringing in my ears, and maybe even make it permanently worse? Or do I do nothing, become sedentary and unhealthy - and not live my life? I certainly choose the former, as it's in my nature, but the compromise does worry me sometimes.
For the purposes of this blog, I've been trying to add numeric values to the level of tinnitus I have. With 5 being my normal constant level, to give me latitude for increase or decrease.
Well, I left for my cycle at 3pm yesterday, and I was a 5. I came home, showered, lay in bed in the quiet, and can honestly say it was at least 7.5 - dropping to about 6 by the time I finally went to bed at 11pm. When I woke up this morning, all the various ringing tones in my ears were back to their normal '5' setting - so at least yesterday's run didn't do any lasting damage.
Purely for scientific reasons, I'll have some wine with dinner, either tonight or tomorrow - and report on that.... hic....
Wednesday, 11 February 2009
A Positive Thinking day
Today I travelled into London for a training course. I was on the go from the moment I woke up at 6.30, and I didn't notice my tinnitus until I was walking back home from the station around 3pm. And that was only because I started thinking about what I was going to write on the blog!
So, if I hadn't been blogging this week, would I have noticed my tinnitus today?
The answer has to be yes - there are specific times each day when I hear my tinnitus. When I wake up and I'm trying to rouse myself out of bed. When I sit at the computer here at home, with only the whirr of the fan in the background. When I switch off the light at night.
Looking at what I've just written makes me realise that's actually a very short list! So, you may ask, can the tinnitus really be that intrusive or distressing for me? Well, yes, at certain times it has been. And that's because I forget about it for a while and then it comes back and reminds me that it's there. And because I know that on certain types of days it will be louder than others. And sometimes I'm not sure if a sudden increase in volume will be followed by a decrease.
But... (and this is a big 'but') most days, for most of the time, I don't notice it. My life is full of wonderful people and experiences - my family, my children, my job, my friends and neighbours, music, reading, the birds in my garden... I am so lucky to have all of this. I have learned to put aside the tinnitus and concentrate on enjoying my life. In fact, while I was typing that list of positives, I forgot all about the tinnitus!
I firmly believe that if you can start to accept that it is part of you, stop fighting against the noises, stop blaming yourself, your environment or a specific event for causing it - you are a long way along the line to coming to terms with it. A more peaceful life will follow. It worked for me.
So, if I hadn't been blogging this week, would I have noticed my tinnitus today?
The answer has to be yes - there are specific times each day when I hear my tinnitus. When I wake up and I'm trying to rouse myself out of bed. When I sit at the computer here at home, with only the whirr of the fan in the background. When I switch off the light at night.
Looking at what I've just written makes me realise that's actually a very short list! So, you may ask, can the tinnitus really be that intrusive or distressing for me? Well, yes, at certain times it has been. And that's because I forget about it for a while and then it comes back and reminds me that it's there. And because I know that on certain types of days it will be louder than others. And sometimes I'm not sure if a sudden increase in volume will be followed by a decrease.
But... (and this is a big 'but') most days, for most of the time, I don't notice it. My life is full of wonderful people and experiences - my family, my children, my job, my friends and neighbours, music, reading, the birds in my garden... I am so lucky to have all of this. I have learned to put aside the tinnitus and concentrate on enjoying my life. In fact, while I was typing that list of positives, I forgot all about the tinnitus!
I firmly believe that if you can start to accept that it is part of you, stop fighting against the noises, stop blaming yourself, your environment or a specific event for causing it - you are a long way along the line to coming to terms with it. A more peaceful life will follow. It worked for me.
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