Monday, 3 February 2014

Tinnitus - it's not just ringing in the ears!

J's experiences with hearing problems (hyperacusis and tinnitus) were acknowledged, and addressed, during 2011 when he finally got to the Nuffield Speech & Hearing Centre in London.  As it's Tinnitus Awareness Week in the UK this week, we wanted to cover his experiences with tinnitus.  

As a young child, J suffered with intermittent glue ear and used to say things which, looking back, seem to indicate tinnitus has been something he's experienced for a long time. For instance, when in the car,  he often asked if there was a motorbike behind the car when there wasn't, he'd say at night that he could hear bubbles popping and he'd often not notice he was being talked to.  His hearing was tested numerous times but it always came back as being 'normal'.  Recently he asked us why the toilet was flushing (it wasn't) when we were sitting reading in silence - it was astonishing to realise (yet again) just how loud the noise/sound J hears as tinnitus can sometimes be!

Once diagnosed, we were surprised to learn the range of sounds that can be 'heard' when someone has tinnitus.  J, once told he was not alone and that his problem had a name, was then able to express more fully the severity of his tinnitus.  He explained that at quiet times it could be overwhelming, that he could ignore it more easily if he chatted to himself and it wasn't always the same sound or volume. 

Many times, J has said "yes" or "what" when noone's said anything.  Now we know it's likely to be his tinnitus that's making him think someone's talking to him.  He also likes to have a small amount of background (ambient) sound as the noise in his head is overwhelming when it's completely silent.  He's explained that trying to concentrate on what's being said, or a task, when the tinnitus volume is high is very challenging (and tiring) for him.  

Regarding the varying sounds and volume levels of J's tinnitus, we have had a few events recently that have allowed us some insight into what he has to handle.  For instance, whilst out on a visit to a shop one weekend before Christmas, there were some Bose noise cancelling headphones in the electrical department that were available to try.  B has been 'angling' for Bose equipment for YEARS so was quick to give them a go... as soon as he tried them, he said to me "you must have a go, they're amazing".  So, I put a pair on and was suitably impressed at the reduction in background noise of the department store - in fact, it was barely audible - and this was just with the headphones NOT playing any music.  We were both astonished and applauding the 'amazing' non-sound and J had a go... well, his reaction could not have been stronger.  He grasped his ears, blanched and yanked off the headphones - it was as if he'd been burnt - his reaction was extreme and instant.  He yelled "I DO NOT LIKE THOSE" as he ripped the 'phones off. Noise cancelling just allowed him to hear ONLY the sounds in his head - his tinnitus - and it was overwhelming for him.

J wearing bone conduction headphones
Bone conduction headphones
Once home and, as is the norm here, trying to think of methods of helping J, I tweeted a twitter pal (the most lovely Vicki who tweets as @KidsAudiologist) and asked if she thought bone conduction headphones would work. As luck would have it, Vicki was at a conference with loads of other audiology bods and so she replied saying she'd ask around.  As usual, she was as good as her word and soon replied to say the people she'd asked thought that bone conduction headphones would be worth trying.  So, having searched online found Aftershokz offered some... as these are stocked by Action on Hearing Loss here we thought they'd be worth trying out.  We ordered online and J tried them out - saying "wow I can hear the music's words" and, even better, he wasn't shouting as he spoke.  He said it was "a bit odd" wearing the headphone on the front of his ears but this was much better than anything being in his ears.

Some of the solutions discussed during treatment in London had been white noise machines, special pillow speakers and ear defenders - all on offer here for 2014 Tinnitus Awareness Week.  J already has ear defenders and likes to have music playing in the background when his tinnitus is 'filling my head' as then he can concentrate on that instead. 

As J doesn't have hearing loss, finding information and support when we first started looking was quite a challenge.  Also, his tinnitus is not due to listening to loud music... however, it's no less irritating for him at times but he does deal with it in a matter of fact way (he likes facts) and did some drawings about it a while back that seemed to help him.   

J's thoughts on tinnitus are that it is "part of me, varies quite a bit and is sometimes really annoying" but he also says "now I know about it, I can think of other things and it helps me to cope".  He recently told his Speech and Language Therapist that it's like "an untuned radio - interference" and when it's really loud, that he can't block it out.  Stressful situations worsen his tinnitus and this is something we've noticed can be improved by using the techniques from his therapeutic treatment. 

Being aware of tinnitus and accepting it DOES exist has allowed J to discuss, learn about and understand methods that work for him in controlling the impact tinnitus has on his life.

J's tinnitus level today
This has been a much longer post than intended and we had hoped to include diagrams and more pictures but they're difficult to find so J did his own - this represents his tinnitus as it is right now!

Articles and organisations

There is a detailed description of the type of therapeutic counselling J undertook on pages 26 to 29 in this issue of Audacity (professional audiology publication) and it also contains another article on Tinnitus in Children on pages 30 and 31.

The British Tinnitus Association has a useful website here and we found these pages useful - About Tinnitus and Tinnitus in Childhood


  1. I love J's description of "an untuned radio". Mine sounds like the wind in your ears at 500mph. I don't like stormy nights, because I can't tell what is real. At the same I can hear the fridge humming!

    1. Hi Dave! Glad you took time to read the blog.

      J can hear the fridge hum too - also the noise of the 'electronics' of the computer mouse!! He has hyperacusis too and we'll be blogging about that another time.

      Interesting about how stormy winds make you feel - J loathes storms and 'loud nights'... perhaps he has the same challenge as you regarding this? It would explain alot. Thanks for the insight.

      L & J

    2. Sounds like I have hyperacusis. I had poor hearing for my first few years, then cured it. However, they left me far more sensitive to sound. Haven't been to a specialist for many years, as they only appeared to be interested if I couldn't hear.

      Tell J he has a super-power. He should have a tee-shirt with a big H on it.

    3. Great idea... thanks again for your comment.

      L & J

  2. Well written :)

    Tinnitus became my 24/7 partner just coming up to a year ago, like J it's not simply a case of a single tone but a multitude of sounds, including pulsetile tinnitus and not surprisingly we share the same expression 'filling my head', it can seem to be so loud in quiet situations that if you are not careful you can feel claustrophobia of sorts, it's a battle of reasoning.

    I've found through talking to people just how many people suffer from tinnitus, this and just talking about it are so important, you definitely seem to have J on the right tracks for that.

    I've created my own little cognitive approach to tinnitus and it seems to really help, I treat it as a best friend in a kind of way. For me I lapsed in many pastimes like reading, walking and generally filling in time after work etc. to distract myself from tinnitus I do all of these now! you could say in a bizarre way it has improved my life to a certain extent! how odd to say that but just a little tip for any future changes.

    Hyperacusis sucks too, cutlery drives me mad when washing up and putting away. The noise flutters and echoes in the ears....any similarities?

    Wishing you all the best in your futures


    1. Thanks for taking the time to comment, Chris.

      Your hatred of cutlery 'clanking' is shared by J and often results in yelling - although he tolerates it more if he's putting the cutlery away. The aim is to blog about hyperacusis before too long, so watch this space!

      L & J

  3. Thank you so much for sharing your story. After almost a year of tests, treatments, more tests, ETN appointments and audio tests, finally last week my 5 year old son was diagnosed with tinnitus. Doctors told me there is not much I can do about it and would stay with him for the rest of his life.
    Thanks to your blog I see there is a lot I can do.
    He does complains once in a while about the "BUM BUM BUM" and "eeeeeeeeeeeeeeee" inside his ears, but he seems ok otherwise.
    He has had sleep apnea, sleeping problems and snoring because he is also dealing with enlarged adenoids, so I'm not sure of the real impact tinnitus has on his life. He does speaks really loud, I'm guessing now he does it so he can hear his own voice....I don't know, maybe I'm just is still sinking in my head everything is so new to me.
    Thanks again for your are an inspiration!

  4. Your article about the tinnitus is awesome and I love this. If you have Tinnitus, or ringing of the actual ears, then you definitely want relief and you would like it fast. The treatments for Tinnitus vary significantly depending on the cause of your condition. Thank you or this nice article!!!