Welcome — this blog is about my personal quest to discover as much as possible about the medical condition “tinnitus”. I have had tinnitus for over 15 years now - and like most people - I realised I didn’t know much about it.
My tinnitus is a loud high pitched buzzing which I can hear even when stood near a pneumatic drill - It usually only bothers me when I am stressed or feeling down - but I haven’t let it stop me doing things that I like to do.
There is a lot of information out there - From “snake oil” salesmen trying to sell you magic pills - to fantastical devices that claim to relieve your tinnitus - sorting out the wheat from the chaff can be a headache in itself. Here you will my own impartial findings and musings - all I am interested in is the truth - the science - and the cure.
I Wish to keep this blog an upbeat affair - There is a lot to be positive about in tinnitus research - medicine is learning more about the brain and how it works every day.
Please leave comments on my posts - I would very much like to know other peoples viewpoints - and if you have any great tips or coping strategies you yourself find useful, then it would be great if you could share them with us.
A little about me :
- Name : Rob
- DOB : 1972
- single
- Location : Lincolnshire, England
- Hobbies : Art, Folk Guitar, chilling out, poker, squash, football, reading, growing chilli peppers
- Occupation : self employed printer (mainly printing on canvas)
- fav place : st Ives cornwall
- fav musician : Donovan
- fav food : hot curries
- pets : fish
- dislikes : 5 foot people who drive huge 4×4 jeeps to corner shop - gggrrrrrrr -
- likes : finding a 20 pound note ————- make that 2 fifties
I like the cut of your jib young man. A positive approach to tinnitus is what is needed. There’s far too much negativety about it out there, which only makes it worse for us ’sufferers’. I have deafness in my left ear and my tinnitus is predominantly in my right ear, or should I say brain. I have concluded that it is the compensatory mechanisms of the auditory system that initiated my tinnitus and the consesquential adverse reaction that has caused it to persist. I have yet to persuade the NHS to give me a hearing aid but I have an appointment in two weeks with my audiologist so will push for one again then. I know that it is very important to balance the auditory system to prevent the onset of tinnitus so I’m hoping a hearing aid will help in the habituation process.
Hi stempy -
I fully agree that the path to beat tinnitus is through positive thinking. I believe the best way to approach tinnitus is by using it as a stepping stone for self improvement - rather than a stone tied around your ankle. Good luck with your hearing aid appointment - the NHS can be a bit of a lottery - I didnt have to push at all for mine really, but I know some people struggle to get one.
please keep us updated on how you get on :
regards
rob
Good news at last, I finally got an appointment for a hearing aid fitting at the end of July. Sometimes you have to kick butt, I think persistence is the key. Don’t let them send you away, just keep on bugging them ’til they give in.
Great to hear Stempy - you will certainly notice the difference when you wear it for the first time - I hope this will help reduce your tinnitus.
I will keep an eye out here or on the RNID forum on your progress — good luck –
Well I got my hearing aid today and I don’t quite know what to make of it. I suddenly have all this noise in my left ear and it’s like overload! I know it takes some time to get used to these things so I will persevere with it and see what happens. There is no volume control on the thing as it’s a fully automated digital job and programmed to my own hearing deficiency, but if I can’t get used to it then I might have to return and ask for it to be turned down, which they can do via some computer software interface thingy. Anyway, that’s the latest update.
Hi Stempy
When I first got mine I had exactly the same reaction — The noise level seemed too loud and the sounds too strange — but after wearing it for one week its amazing how much your brain adapts to it —- trust me once you get over that “wow factor” all is ok.
I have had mine for 4 months now and I have never had it re-programmed, — in fact when I put it in nowadays I cant believe its the same hearing aid that I first popped on — the sounds don’t sound loud or odd at all — the brain is an amazing thing.
GL Stempy — keep up the good work on the forums
Wobbly Bob
Hi Rob
Great blog and really inspired by your positive approach. As I’m sure you and your readers can relate to, I have good days and bad days. Up very early this morning from the tinnitis but some days I can cope better.
My way of coping was to find out about as much research going on as possible. Fortunately, I was in a position to interview two leading tinnitus scientists and an ENT clinician. The interview for the two scientists was done for Deafness Research UK just before their ‘Meet the Scientists’ event which I can really recommend.
I’m hoping the videos will encourage others to donate to tinnitus research. If you are interested, email me and I will forward you the links, then if you think they would be useful for your readers please feel free to post them here.
I hope to hear from you and thanks again for your great blog!
I’ll make a similar case for a hearing aid that I will for tri-focal glasses. When I first put them on, they were impossible to use; everything was swimming around when I moved my head and I went to my optometrist and told him I couldn’t wear glasses. After 2-3 weeks, I forgot I had them on. So, hand in there.
Hi Rob
I stumbled over your website while doing some research for a project I am working on. I am a Master of Audiology student at the University of Auckland (New Zealand). Although I am not a tinnitus sufferer myself, I have seen first hand what I monster it can be.
Next year I will be undergoing a tinnitus project for my thesis, and I am starting to map out the project and get my head around what I am taking on.
Essentially I want to develop an open source, portable, sound therapy device. Being open source means that everything from design schematics to software and documentation will be open to anyone. Open source licensing will ensure that any copies or incarnations of any element of this project will remain open to everyone.
For more detail you can go to my website. Its still early days but that’s my vision.
The reason I am contacting you is that you embody the same principles, you have released MP3s and the Tone Therapy Application to the public hoping it will help others.
It would be great to have your input during my project, and your are welcome to be involved at any level you feel comfortable with.
Hope to hear from you via email soon
-Ryan Hunt
So not alone then. Have had permanent high pitched “rushing” sound (bit like what you hear when you pass electricity pylons) in left ear for a year or two, just last few weeks got worse and driving me nuts. Been told I have a slight hearing loss in this ear (due to old age - what - I’m only 58!) and that is why the sound is more pronounced. When everything is very quiet it is a lot worse obviously. Encouraging to read the other comments on here. Perhaps I’ll try a hearing aid…………
Nicola
Hi guys,
My tinnitus started about five months ago, when I turned 20. A high pitched noise in my head. It changed my life. My future started looking darker and darker. To make things worse, I also developed hyperacusis. Sudden changes in volume started to hurt. No cure. These two words struck great fear into my heart. Now, five months later, the noises aren’t gone. However, I’m a happy human being again! My tinnitus doesn’t bother me as much as it once did, it doesn’t scare me anymore. In fact, most tinnitus suffers will be happy again! Don’t forget that.
Rob, thanks for this blog. Too bad it you stopped posting, though. I really love the gallery, it’s a great idea and it’s a creative way to show how one experiences tinnitus.
Lost the right side hearing as a child following a Mastoid operation. Two years ago the left, “good ear” started to suffer. The hearing aid seemed to work at first then I needed a more powerful one. All was fine until one morning a few weeks back - the hearing wasn’t so good… it had changed.
A visit to the audiologist resulted in a re-hearing test and a hearing aid reset but then music seemed to sound “Strange” and half the noted were missing. Familiar TV theme tunes were unrecognizable - and trying to actually hear what was being said on TV was difficult too. It’s getting worse Some days are better than others - it depends on how well I have slept - and the sleep I get is spasmodic. I’m trying to “hang in there” but life is becoming “Unbearable”…. I’m in a state of dispair….
Hi. Rob. I am doing just the same with my tinnitus in Ukraine (collecting info about tinnitus). Have you head about this: http://www.youtube.com/v/ElXT5uq-Otg?fs=1&hl=ru_RU
It seems to be a real cure from our disease.
Hi Valeriy
I watched the video but unfortunately I did not pay enough attention to my German lessons to be able to understand what they were talking about ;(