Hi all, here is my story. Having been a rock musician since I was a teenager, I'm now in my 60's. And my Tinnitus has got progressively worse over the last few years. During this 'heatwave' in the UK my Tinnitus suddenly got a louder. I have visited two audiologists in the past one with very surprising results the other not so. The first audiologist was private and ran me through a broad set of tests for my hearing. She spent well over an hour with me and eventually fitted me with what she called state of the art hearing aids. These aids could be fine tuned and I also believe generated white noise. Once I was fitted with these aids, my Tinnitus vanished completely, and my hearing was incredible. (I have high end hearing loss, due to standing in front of a crash cymbal for thirty odd years) unfortunately the price for these privately purchased hearing aids, was way out of my price range. Next stop the NHS, this was an entirely unpleasant experience. It took over a year before they could see me. And once I got an appointment the audiologist was less that supportive, I was fitted eventually with NHS hearing aids, which in comparison to the private aids just didn't work at all. This led me to make another appointment, but when ringing them, I was told they couldn't fit me back in for over another year, and then on the day of my appointment I was told the audiologist was sick and off, then covid hit. I haven't been back. Anyway here I am. My Tinnitus is in the range of 8 out of 10 at the moment.
Old Musician With Tinnitus. : Hi all, here is... - Tinnitus UK
Old Musician With Tinnitus.
I’ve only ever had NHS hearing aids, though they don’t have any function other than to help hearing. They certainly “help” T too, as the T is less prominent when the real world is clearer.
Thanks Rosie.
It won't help you to say that my NHS experience was different and better, but in the lottery, mine was, and reading this may offer a bit of comfort to the next person.
I began to suffer from T in 2002 and at onset a private audiology test showed no significant hearing loss.
In 2017 my T worsened and I was referred to my local NHS specialist unit. They were brilliant. I was very thoroughly and sympathetically tested. The nice lady audiologist even signed the printout of the results with "Best Wishes". I was prescribed and supplied free of charge with a phonak aid for my left ear (the seat of the problem). It includes a masker tuned by them to my T. It has served me well.
I think I should be re-evaluated now - I am getting older and my hearing is deteriorating, but going back to the same Unit would be my preference.
Good luck. This damned condition affects us all differently.
Hi, Tinnitus UK runs a support group specifically for musicians: tinnitus.org.uk/event/music...
It's led by a professional musician who is still active in that profession - Jack Rubinacci. It might be a good place to speak with other people who have been on a similar journey to yourself.
My story is similar with nhs. I suspect I have ETD. A burning pain in my neck brought on my tinnitus which is 24/7 I waited 2 years until my final appointment and was told my to live with it basically. They just won’t listen to my symptoms
Hi Von. I’ve had private hearing aids in the past and also NHS aids present day.
The only difference to myself is the private ones were self charging (overnight)
and cost £3500. The NHS ones from spec savers were free. Neither has improved my T to be honest but at least I get to hear bird song in all its glory. My T used to affect me greatly but feel lve almost habituated though I do get bad spikes occasionally. Keep yourself busy and try not to dwell on your T. I’ve just had a mri scan on my brain which is clear(so no dementia yet ? I’m 71 and had T for 40 yrs getting progressively louder each year and I’m not convinced it’s anything to do with the ears which I know will seem odd to yourself. Does it affect your sleep I wonder? Best Wishes for your future and remember SPIKES though distressing do pass .
That is interesting, thank you. As you may have read, my own phonak on the NHS has been excellent. Battery powered, but the batteries are free and last for days even with the masker much used. I carry a spare card of batteries in my wallet.
I am coming up for re-evaluation as my hearing deteriorates (we are close in age), and have a friend who spent > £6K recently on her new set. Of course these things are subjective, but so far as I can tell this has bought her only overnight charging and - which may be very valuable to some - an add-on that deals well with restaurants and other locations with bothersome ambient noise.
I will probably go back to the NHS unit as my first port of call I think.
Yes bellyboo, sleep is an issue as I was always a light sleeper so Tinnitus really doesn't help. I don't think I have had a nights sleep in the last twenty odd years without somekind of low level masking sound playing via headphones. Mornings are usually the worst though
Hi there VonAdder. I can really relate to your story. I played in a metal band for 20+ years. Still do the odd gig. I developed tinnitus around 18 months ago which was made worse with covid. A private hearing test revealed almost total loss of high frequency in right ear. This is the ear with the loudest tinnitus. The recommendation was 2 hearing aids at around £5000. I decided to go down the NHS route! I was lucky. The NHS audiologist was also a tinnitus sufferer, and fitted me out with the SAME hearing aids that I nearly paid £5000 for! They're pretty good but i don't wear them all the time. The frustrating thing for me is none of my fellow bandmates have the hearing problem. Maybe the fact I worked in a truck and bus workshop for 40 years has something to do with it also. I've had time to work out things like stress, caffeine, poor neck posture, all make my tinnitus worse. I've also worked out meditation, sound therapy( using the correct frequency for your tinnitus), cbt, Bluetooth sleep bands, all contribute to a lower volume. I was always pretty active, cycling, walking, surfing, so my days are pretty packed, which is really important. I still go to, and play the odd gig, now with earplugs!! They won't block it all out, but they take the edge off. I was thinking off stopping my music altogether at one point, but realised hiding away from noise actually makes the tinnitus worse. We have to live!! So hang in there. Theres no cure yet. But there's loads of stuff that make it easier. Great to hear from a fellow musician. Take care.
So many musicians I know are either in denial or too cool to admit that they have Tinnitus. But as the old crowd are now getting on in years, many of them have suddenly began to think "hang on!"
Yeah. I remember i used to frown at people who were using earplugs!! Wish I had used them years ago. Although the ENT doctor who I seen recently told me some people's ears are just more robust than others. He also told me that my tinnitus may not be linked to hearing loss at all. I know plenty of people who have hearing loss but no tinnitus. Incidentally, meant to mention, I play my sound therapy through shokz bone conductor headphones. They are awesome, and leave your ears free to hear other sounds. Much better than streaming it through the hearing aids.
Hi I’m a fellow musician. Suggest you contact PRS or Musicians Union they both have a benevolent fund. You have found some hearing aids that solve your tinnitus problem so that seems to be the answer. One of these these musicians associations may stump up all or some of the money needed.
Good luck if you need a ref let me know 👍
Interesting, thanks bournville.
Lots of great comments here, thanks to my fellow musicians for piping up. There seems to be a big issue within the music scene where T is either worn as a badge of honour or ignored completely for various 'uncool' reasons. If I could give any advice to my 14 year old self it would be "put that bloody cigarette out, and wear EARPLUGS!" (quit smoking for over 20 years now). Thanks once again all. I think a re-visit to my GP is on the cards.
Great .Let me know if the YouTube Tinnitus masking videos work .
A few of them work certainly.
Another muso here. Played in rock bands with no hearing protection from about 1973 (were ear plugs even a thing then?).
My experience of private and NHS are quite different to yours.
It was the folk punk band in 1989 with an electric fiddle which did for me. One gig I ended up standing in front of his amp. It was deafening "It has to be loud so I can hear it!". I went home with my ears ringing and they've never stopped.
I was referred to the audiology department at our local hospital. They recommended wearing earplugs, put me on a tinnitus therapy course and confirmed that not only did I have tinnitus but I'd lost most frequencies above 7k. I hear stories now about year long waits but back then it only took a few weeks.
I gave up playing live in 2003 as I couldn't deal with how bad the tinnitus would be the day after a gig or rehearsal. Now most of my playing is at home working remotely with other musicians.
A couple of years ago I had a free trial of hearing aids at Amplifon. I hated them. They did nothing for the tinnitus (TBF they never said they would - just might) and made everything sound artificial. My acoustic guitar sounded horrible and the harmonica created a nasty rattle in my ears (then again, I'm told it did that to most people). In the end that was just as well as I couldn't afford the £3500.
On the other hand, I saw my doctor a month ago about something different and asked him about being referred to audiology as my hearing was getting worse. I was shocked to get an email from Specsavers the week after for an NHS hearing test. Within a week I had new hearing aids. They make things a little clearer but the tinnitus is unaffected.
After over 30 years with tinnitus I'm still on a rollercoaster. Some good days, some bad. Sometimes I deal with it well and sometimes I don't and that can be awful.
I guess I have habituated without realising it and don't have specific coping strategies, although I now avoid loud gigs (even with specialist ear plugs) as it really makes the tinnitus worse.
Good luck with whatever you use to deal with it.
Yes it does seem odd how many of us have different experiences. I guess that's life. My hearing test with Amplifon was exemplary as stated and the hearing aids they recommended were incredible. After setting them up by testing my T frequency by playing various tones into my ears then programming the aids to match and mask the T tone. It was night and day. I genuinely nearly broke down in tears. They also greatly improved my hearing. When I took them off it was like taking my head out of a barrel of molasses. When she told me the price I nearly broke down in tears a second time. (ha!) My NHS audiologist was very dismissive and uninterested in comparison.
That's interesting. There was no attempt at tinnitus matching at my Amplifon session. An in depth test without a doubt but in the end not much different to Specsavers. Using a tone generator I stop hearing it after about 7k. They couldn't get the EQ right for me. Too much treble (maybe trying to compensate for my hearing loss in those frequencies). It made the world sound artificial and I gave them back after the trial period ended.
Do you know what make/model the hearing aids you were given? I'm not sure I expect an answer as I couldn't tell you what the ones I had were called! How much were they, if you don't mind me asking? My ones were around £3500. If they had "cured" my tinnitus I might well have taken up the offer of credit.
I can't tell you what make they were as it was a few years ago now. All I was told is that they were designed for musicians. They were red very small, fitted behind the ear and you could access them yourself via your PC/Laptop when you needed to tinker with them. The cost I do remember, brace yourself....£9,000. That included a lifetimes aftercare, updates, fixes and returns etc.
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