Quiet - Issue 3 2021

QUIET Volume 32 Number 3 ISSN: 0968-1264

QUIET Volume 32 Number 3 ISSN: 0968-1264


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QUIET<br />

<strong>Issue</strong> Three <strong>2021</strong><br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 1

Thank you to our Corporate Members for their support<br />

AfterShokz<br />

Autifony Therapeutics<br />

Limited<br />

CAuRES Hearing<br />

Aid Solutions<br />

EarDial<br />

Hear Pure and<br />

Wellbeing<br />

HiKent<br />

The<br />

Hearing<br />

Coach<br />

Harbeth<br />

Audio Ltd<br />

Lakeland<br />

Hearing<br />

Nuheara<br />

RNID<br />

Snugs<br />

Earphones Ltd<br />

Tinnitus<br />

E-Programme<br />

East Kent University<br />

Hospitals NHS<br />

Foundation Trust<br />

Royal Hallamshire<br />

Hospital<br />

(Sheffield Teaching Hospitals<br />

NHS Foundation Trust)<br />

Always Ear<br />

Better<br />

Hearing<br />

Clinic<br />

Chippendale<br />

Hearing<br />

Geraint Davies<br />

Hearing Ltd<br />

Hear Again<br />

Limited<br />

Hear We Care<br />

Holland<br />

Doctors of<br />

Audiology<br />

Leightons<br />

Opticians and<br />

Hearing Care<br />

Oticon<br />

Scrivens Hearing<br />

Care<br />

Sonova UK<br />

Limited<br />

The Invisible<br />

Hearing<br />

Clinic<br />

Widex UK Ltd<br />

Gloucestershire<br />

Hospitals NHS<br />

Foundation Trust<br />

Sandwell and West<br />

Birmingham Hospitals<br />

NHS Trust<br />

AngliEAR Hearing &<br />

Tinnitus Solutions<br />

Bollington Hearing<br />

Centre<br />

Cubex Ltd<br />

Guymark UK<br />

Limited<br />

Hearbase<br />

I am Ear<br />

Hearwell<br />

Ltd<br />

M C Hearing<br />

Oto Health Ltd<br />

Simply Hearing<br />

Sound Matters<br />

The Outside Clinic<br />

Hospital<br />

services<br />

Nobles Hospital<br />

Isle of Man<br />

Torbay and South<br />

Devon NHS<br />

Foundation Trust<br />

Audiological<br />

Science<br />

British<br />

Academy<br />

of Audiology<br />

Diane<br />

Hammond<br />

Independent<br />

Audiologist<br />

Halo<br />

Hearing<br />

Solutions<br />

Hearing<br />

Power<br />

Help in<br />

Hearing Ltd<br />

Isabella Fisher<br />

Independent<br />

Hearing Care<br />

Neuromod<br />

Devices Ltd<br />

Peter Byrom<br />

Audiology Ltd<br />

Sivantos Ltd<br />

Specsavers<br />

The Tinnitus<br />

and<br />

Hyperacusis<br />

Network<br />

Barnsley Hospital NHS<br />

Foundation Trust<br />

Royal Berkshire NHS<br />

Foundation Trust<br />

University Hospitals<br />

Bristol and Weston<br />

NHS Foundation Trust<br />

Audiological<br />

Specialist<br />

Care Ltd<br />

British Society<br />

of Audiology<br />

Duearity<br />

Harley Street<br />

Hearing<br />

Hearing Therapy<br />

Ltd<br />

Hidden Hearing<br />

Isle of Man<br />

Hearing Solutions<br />

North East<br />

Hearing and<br />

Balance<br />

Puretone Ltd<br />

Smiths<br />

Hearing<br />

Care Ltd<br />

Starkey Hearing<br />

Technologies<br />

The<br />

Tinnitus<br />

Clinic<br />

Chesterfield Royal<br />

Hospital NHS<br />

Foundation Trust<br />

Royal Cornwall NHS<br />

Foundation Trust<br />

Worcestershire Acute<br />

Hospitals NHS Trust

Supporters 02<br />

Thank you to our Corporate Members<br />

Managing tinnitus 08<br />

Evolution not revolution - tinnitus<br />

management and technology<br />

Getting #BacktoLive<br />

Getting the most from your ENT<br />

appointment<br />

Fundraising 18<br />

Support the BTA and challenge<br />

yourself<br />

Real lives 20<br />

Andrew, Sash, Andrea and Paul share<br />

their stories of living with tinnitus<br />

Tinnitus support 25<br />

Products for tinnitus<br />

Noticeboard<br />

Tinnitus support group listings<br />

QUIET<br />

Volume 32 Number 3 ISSN: 0968-1264<br />

Xmas appeal 04<br />

How you can help people like Lynette<br />

Conference report 06<br />

The BTA Virtual Annual Conference<br />

Research 13<br />

The Shapiro Prize winner announced<br />

Tinnitus and tinnitus disorder<br />

For professionals 16<br />

Treating young people with tinnitus<br />

Don't throw away the wrapper! The wrapper for your magazine is<br />

now compostable with your garden waste.<br />

Contacts<br />

Our Vision:<br />

A world where no one suffers from tinnitus.<br />

Our Mission:<br />

We will drive progress towards a cure and deliver<br />

excellent support to help people living with tinnitus.<br />

tinnitus.org.uk<br />

Editor<br />

Nic Wray<br />

nic@tinnitus.org.uk<br />

Address<br />

British Tinnitus Association, Ground Floor, Unit 5, Acorn<br />

Business Park, Woodseats Close, Sheffield, S8 OTB<br />

Registered charity no: 1011145. Registered in England.<br />

Helpline<br />

0800 018 0527<br />

Whilst the British Tinnitus Association (BTA) makes every attempt to ensure the accuracy and reliability of information in this<br />

magazine, it is not a substitute for medical advice. You should always see your GP/ medical professional. Advertisements for<br />

organisations, products or services do not imply endorsement of them by the BTA. All views are those of the authors and not the BTA.



WISH<br />

www.tinnitus.org.uk/christmasappeal<br />

I am writing this article to say thank you.<br />

Thank you for your continued support<br />

of the British Tinnitus Association. Your<br />

ongoing support meant the BTA could<br />

help more people like me when they<br />

needed it most.<br />

For me, that time was Christmas. My name is Lynette and I know<br />

Christmas can be a difficult time for many. For those living with<br />

tinnitus it can be a time of isolation, stress and anxiety. I wanted<br />

to share my tinnitus story with you and let you know how the BTA<br />

were there for me.<br />

My story<br />

Christmas 2020 was a particularly turbulent<br />

and traumatic time for me: my tinnitus had<br />

heightened to a point where I’d not slept for<br />

three nights solid. I went to work one day,<br />

and I didn’t know who or where I was. I just<br />

felt like I was at crisis point and having a<br />

nervous breakdown.<br />

It was only then that I realised I needed additional support from all the<br />

professionals that had helped me when I was first diagnosed with<br />

tinnitus and hearing loss. Particularly the BTA, because they are the<br />

professionals in dealing with this and the unknowns associated with<br />

tinnitus. They were really helpful and supportive.<br />

I had to take time off work to recover but realised during that time that I<br />

needed to do my own self-help, and with the BTA’s support, I was able to<br />

manage better and I haven’t been at crisis point since December 2020.<br />

14,000<br />

Around 14,000 calls, web<br />

chats, emails and texts are<br />

answered each year by the<br />

Tinnitus Support Team.<br />

1.7 million<br />

1.7. million people<br />

benefitted from accessing<br />

BTA support and information<br />

services last year.<br />

Please donate today at<br />

www.tinnitus.org.uk/<br />


How the BTA supported me<br />

The hospital signposted me to the BTA website. Their website has lots<br />

of information and I became a member straight after. I then called<br />

the helpline for advice and after the call registered with one of the<br />

BTA support groups. I attended monthly support group sessions and<br />

thought "I’m not on my own". At that moment I felt very well supported.<br />

The BTA are here for you<br />

The BTA’s helpline services are available over the Christmas period.<br />

Their telephone helpline, web chat, email and SMS text service are solely<br />

dedicated to supporting people with tinnitus when they need<br />

that support most. At a time of year when tinnitus can make people<br />

feel a sense of isolation, these helpline services are vital. Please help<br />

the BTA to be there at Christmas, and all year round, by donating today.<br />

How you can help<br />

Please donate today to make sure the BTA can support more people<br />

like me. I know what a difference the BTA made to my life and how I<br />

manage my tinnitus. Help them to be there for people with tinnitus over<br />

Christmas and help them feel less isolated. This is my Christmas wish.<br />

The BTA receive no money directly<br />

from the government, so your donation this<br />

Christmas really will make a huge difference<br />

to people living with tinnitus.<br />

Here are some examples<br />

of the difference your<br />

donation can make:<br />

£23<br />

could pay for the<br />

BTA to facilitate a<br />

support group session<br />

£44<br />

could support<br />

1,500 people by text<br />

£110<br />

could train a new<br />

helpline volunteer<br />

Thank you.<br />

Lynette<br />

Please<br />

donate today<br />

Help the BTA support more<br />

people like me struggling<br />

with tinnitus over Christmas<br />

and the year ahead.<br />

Donate by using the<br />

reply slip and enclosed<br />

envelope or visiting<br />

www.tinnitus.org.uk/<br />

christmasappeal<br />

Alternatively, you can call<br />

0114 250 9933 and donate<br />

over the phone.

Event round-up<br />

Aimed at audiologists, ENTs, GPs, hearing<br />

care professionals, psychologists, tinnitus<br />

support groups and researchers, the BTA<br />

VIrtual Conference Programme ran a<br />

different theme each day – including the<br />

psychology of tinnitus, practical skills and<br />

the latest in tinnitus research – with topics<br />

ranging from paediatric tinnitus, PTSD<br />

management and tinnitus, and the impact<br />

of tinnitus on professional musicians.<br />

In numbers:<br />

• 5 days<br />

• 20 lectures & seminars<br />

• 35% non-UK speakers<br />

• 308 attendees<br />

• 25 countries<br />

The most popular session of the week was<br />

‘Tinnitus and psychological symptoms in<br />

adult cochlear implant recipients’, which<br />

was presented by Dr Robert Pierzycki from<br />

the University of Nottingham, with over 162<br />

people logging in live.<br />

Other highlights included Professor David<br />

Baguley’s session on ‘Insights into tinnitus<br />

and hyperacusis and their association with<br />

general/mental health, from the Busselton<br />

Healthy Ageing Study’ and ‘Traumatic<br />

exposures and their influence on tinnitus’,<br />

presented by Dr Marc Fagelson.<br />

Wordcloud from attendee feedback<br />

Echoing last year’s conference, it was<br />

particularly encouraging to see high levels<br />

of engagement from attendees with the<br />

live Q&A sessions after the presentations.<br />

The online format gave the chance for<br />

more questions – no delay in waiting for<br />

the roving mic – and people really took<br />

advantage of the opportunity to interact.<br />

Feedback from attendees was very positive,<br />

with comments such as, “One of the best,<br />

most informative events I have attended<br />

EVER of the past 20+ years” and “Fantastic<br />

presentations with some unique ideas that<br />

even as an experienced audiologist I had<br />

not considered”.<br />

The sessions will be available online for the<br />

next twelve months for attendees. For those<br />

who have missed out, post-event access<br />

for all the sessions can be purchased at<br />

https://www.btaconference<strong>2021</strong>tickets.<br />

co.uk/bta<br />

6 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

THE<br />

SOUND<br />

OF<br />


Searching For A Tinnitus Cure<br />

Tinnitus Week<br />

7-13 February 2022<br />

www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 7

Evolution not revo<br />

Audiologist Aida Francisca Lopes discusses modern tinnitus treatments<br />

Today, people are aware of the complexity<br />

of tinnitus, its management and causes,<br />

but this has not always been the case.<br />

Previously, tinnitus was simply known as<br />

"ringing in the ears". Sound therapy options<br />

were limited to cassette tapes, radio and<br />

analogue hearing aids.<br />

However, with research have come better<br />

and more convenient management tools<br />

which can be adapted to the lifestyles of<br />

today’s generation.<br />

Sound enrichment<br />

Although the principles of tinnitus<br />

management haven’t changed much, the<br />

devices and the delivery methods have<br />

changed over time. These now include:<br />

• Small in-ear white noise generators<br />

• Digital hearing aids<br />

• Combination devices (digital hearing aids<br />

with a built-in sound generator)<br />

• Tabletop sound generators<br />

• Smartphone apps<br />

• YouTube channels with ambient noise<br />

soundtracks.<br />

Ways to use sound enrichment<br />

One common way to initially try sound<br />

enrichment or sound therapy is to listen to<br />

relaxing and natural sounds. You can use<br />

sound generators that are standalone table<br />

top models, wearable ones or even sound<br />

pillows or pillow speakers.<br />

Sound pillows or pillow speakers can be<br />

Table top sound generator<br />

plugged into a sound generator, CD or MP3<br />

player. You can adjust the sound at the<br />

level where your partner is not disturbed<br />

and you can have the sound on throughout<br />

the night.<br />

Some sound generators come with an<br />

aromatherapy diffuser to aid relaxation or<br />

sleep, and others come with the option to<br />

load your favourite sounds.<br />

Sound therapy can also be delivered<br />

through ‘smart speakers’. For example, the<br />

Echo Dot speaker with its Alexa App offers a<br />

set of ambient sounds. You could ask Alexa<br />

to play the rain noise for 10 minutes to put<br />

you to sleep and set a time for the sound to<br />

turn on when or before you wake up so that<br />

you do not wake up to silence.<br />

Apps for tinnitus<br />

Various Apps have been built for tinnitus<br />

sound therapy. These provide information<br />

8 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

lution!<br />

and advice, as well as sound therapy,<br />

meditation and relaxation exercises. Two<br />

popular ones are Oticon Tinnitus Sound and<br />

Beltone Tinnitus Calmer. The Beltone app<br />

also has psychological strategies including<br />

elements of mindfulness and elements<br />

of Cognitive based therapy (CBT), as does<br />

Tinnibot.<br />

A survey conducted by Dr Magdelena<br />

Sereda identified a number of other<br />

apps that individuals with tinnitus found<br />

helpful, although not all of these had<br />

been developed specifically for tinnitus<br />

management. These included:<br />

• MyNoise<br />

• ReSound Relief<br />

• Rain Rain Sleep Sounds<br />

• Headspace<br />

• Tinnitus HQ<br />

• Tinnitus Balance<br />

Combination devices<br />

Because tinnitus often comes with hearing<br />

loss, these are often treated at the same<br />

time. Combination devices target hearing<br />

loss with amplification and can give<br />

background noise for tinnitus relief at<br />

the same time. These devices come with<br />

different types of noise, and whichever<br />

ones feel better to you and more effective<br />

can be applied in the device settings.<br />

You can also get Bluetooth enabled devices<br />

(such as the Engage Oticon) that have a<br />

range of sounds. These can be connected to<br />

your phone via Bluetooth and an app so that<br />

the settings and volumes can be adjusted<br />

using your phone. You can also wirelessly<br />

stream alternative tinnitus relief options,<br />

such as your favourite music, audiobook,<br />

Smart phone and smart speaker<br />

podcast or even a relaxation guide.<br />

Other therapies<br />

We have more in tinnitus management than<br />

just sound enrichment. Psychologically<br />

based therapies are also available.<br />

Traditionally, these have been delivered<br />

face to face but they can now also be<br />

undertaken via the internet. Internet-based<br />

cognitive behavioral therapy (iCBT) is ideal<br />

for individuals who are too busy for face-toface<br />

sessions, but who would like to have<br />

therapies done in the comfort of their home.<br />

The NHS provide a service called Improved<br />

Access to Psychological Therapies (IAPT)<br />

where you can now refer yourself in times<br />

of worry and stress and talk to someone<br />

regarding tinnitus-related anxiety and your<br />

mental wellbeing.<br />

You can find more information on these<br />

topics through the BTA’s website, social<br />

media streams, email newsletters and<br />

publications.<br />

That organisations, products or services have<br />

been named in this article does not imply<br />

endorsement of them by the BTA.<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 9

Getting #BackToLive<br />

Since March 2020, live music events have<br />

very much laid dormant. This has had a<br />

significant impact on musicians, event<br />

organisers and people who enjoy going to<br />

festivals, gigs and clubs.<br />

Live music events are now beginning to<br />

take place again, as we start to get back<br />

to what is now commonly being called<br />

#BackToLive.<br />

This means it is vital that we make more<br />

people aware of the need to protect<br />

themselves from tinnitus and hearing<br />

damage at live music events. The problem<br />

is that having been restricted so much over<br />

the past 18 months, will people want to<br />

think about protecting their hearing?<br />

Musician and DJ Anne Savage is<br />

an incredible BTA supporter and an<br />

Ambassador for our tinnitus prevention<br />

campaign, Plug’em. We asked Anne how<br />

recent events had impacted her and how<br />

she felt about getting back to live:<br />

“As a full-time musician and DJ,<br />

obviously my live gigs stopped overnight.<br />

Initially I thought it might improve my<br />

tinnitus due to less exposure to loud<br />

music, but the stress and uncertainty<br />

surrounding the impact of the pandemic<br />

on the future of night-time industries -<br />

for example venues going out of business<br />

- actually made it worse at times.<br />

"I am thrilled most venues are back<br />

open and I’m happy to be working again,<br />

but I worry about large crowds and<br />

contracting the virus even though I’m<br />

double-jabbed. I also have concerns for<br />

my fans, clientele and all young people<br />

Anne Savage<br />

as they return to festivals and nightlife.<br />

They may place less importance on<br />

hearing conservation - that message<br />

seems to have got lost amongst the other<br />

medical and pandemic-related worries<br />

people have had to contend with.<br />

So now, more than ever, it is crucial to<br />

get across the importance of protecting<br />

your hearing to avoid tinnitus and other<br />

noise-induced hearing damage.”<br />

If you want to know more about how to<br />

protect your ears at live events then visit<br />

www.plugem.co.uk. And if you have<br />

questions or are worried about tinnitus,<br />

please do get in touch with our Tinnitus<br />

Support Team on 0800 018 0527 or by<br />

joining a web chat with us at www.tinnitus.<br />

org.uk .<br />

10 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

Getting the most from your<br />


Taking an active role in your tinnitus<br />

management can help you improve your<br />

quality of life. One way to do this is to<br />

make sure you get the most out of any<br />

appointment with your ENT consultant or<br />

audiologist, so we've come up with four top<br />

tips to help:<br />

1. Be prepared<br />

Think about your appointment ahead<br />

of time. Think about your concerns and<br />

questions. Make a list of what you want to<br />

discuss.<br />

Questions you may want to ask could be:<br />

• Do I need any tests?<br />

• What treatment options are there?<br />

• Is there anything I can do to help myself?<br />

• Where can I go for more information?<br />

• What happens next?<br />

2. Check the details<br />

Find out how long your appointment will be.<br />

By knowing how much time you have, you'll<br />

be able to plan your approach.<br />

3. Confirm the type of<br />

appointment<br />

Will it take place face to face, over the<br />

telephone or video call? This will allow you<br />

to prepare, for example if you need to find a<br />

quiet and comfortable place for a phone or<br />

video call, and you may need headphones.<br />

If you need captions for a video call, or an<br />

interpreter for a face-to-face meeting, ask<br />

if this is available.<br />

4. Opt in to letters<br />

If you are seen in a hospital clinic, it can be<br />

useful to receive a copy of your clinic letter,<br />

as well as your audiogram (hearing test)<br />

and management plan.<br />

You may also like to watch 'Getting the<br />

most your GP consultation' on our website:<br />

www.tinnitus.org.uk/free-webinars<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 11

Registration opens<br />

baaudiology.org<br />

SPRING 2022<br />

18th<br />

Save the date<br />

Annual<br />

Conference<br />

13-14 October 2022<br />

Central<br />

Manchester<br />

Complex<br />

Convention<br />

12 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

The Marie and Jack<br />

Shapiro Prize<br />

We're pleased to announce the award<br />

of the Marie and Jack Shapiro Prize to a<br />

study that sought to investigate ways of<br />

increasing access to psychology-based<br />

tinnitus treatments.<br />

There is currently no cure for tinnitus,<br />

but psychology-based treatments<br />

have a strong evidence base for their<br />

effectiveness. Access to these treatments<br />

is patchy and it is tremendous to see people<br />

thinking about new ways of delivering these<br />

interventions.<br />

This study provides both the clinical and<br />

research communities with a number of<br />

important learning points. These could help<br />

lead new research towards more effective<br />

and accessible treatments for tinnitus.<br />

The paper, “The TinMan study: feasibility<br />

trial of a psychologically informed,<br />

audiologist-delivered, manualised<br />

intervention for tinnitus” led by Drs John<br />

Taylor and Dean Thompson from the<br />

NIHR Nottingham Biomedical Research<br />

Centre and a team of patients, clinicians<br />

and researchers, found that although the<br />

patients found the treatment acceptable<br />

and helpful, audiologists identified<br />

potential barriers to use that will need to be<br />

addressed before it can be used in clinic.<br />

The prize was judged by our Professional<br />

Advisers’ Committee, who commented<br />

that it was “A useful study to explore a<br />

newly emerging way of increasing access<br />

to psychologically informed treatments for<br />

tinnitus. It is great to see robust feasibility<br />

studies being developed to explore how<br />

such approaches need to be designed<br />

and adapted and to consider if this type<br />

of intervention can be of use to patients.<br />

Although the findings may indicate that<br />

this approach has significant barriers, in<br />

the longer term, this type of work is likely<br />

to have an impact on how tinnitus care<br />

evolves.”<br />

Chief Investigator Dr Derek Hoare said, "On<br />

behalf of the team involved in this work, I<br />

would like to thank the BTA and say how<br />

delighted we are to be awarded this year’s<br />

Shapiro Prize. This work was funded by the<br />

NIHR and was a highly collaborative effort.<br />

The team included patients and patient<br />

advocates, clinicians and researchers.<br />

Together we produced and tested a<br />

treatment manual that can be used by<br />

audiologists to provide psychological<br />

support for people with tinnitus. With a<br />

little more work, we plan to test the new<br />

treatment manual in a larger trial and make<br />

it ready for use in clinics.”<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 13

Tinnitus & tinnitus disorder<br />

The British Academy of Audiology (BAA)<br />

Conference returned face to face last<br />

month and attracted over 500 delegates to<br />

what is the largest audiology conference in<br />

the UK.<br />

Prize-winning poster<br />

The BAA Conference offered the<br />

opportunity for organisations to submit a<br />

poster to display the latest findings in the<br />

field. Topics included clinical, education,<br />

research, service innovation and workforce<br />

abstracts. With nearly 100 posters on<br />

display, the BTA were delighted that our<br />

A patient perspective on definitions for<br />

tinnitus and tinnitus disorder research<br />

poster, produced by Dr Georgina Burns-<br />

O'Connell with contributions from Lucy<br />

Potter and Nic Wray and our Consultation<br />

Group, won Best Research Poster. This was<br />

a fantastic achievement for the authors<br />

and the BTA.<br />

Tinnitus and tinnitus disorder<br />

Clinicians and researchers (De Ridder et al.<br />

<strong>2021</strong>) recently proposed a new definition<br />

for ‘tinnitus’ and developed a definition for<br />

‘tinnitus disorder’:<br />

• Tinnitus = perception of sounds with<br />

"no identifiable corresponding external<br />

acoustic source"<br />

• Tinnitus disorder = tinnitus with<br />

associated suffering.<br />

Suffering is defined as “emotional distress,<br />

cognitive dysfunction, and/or autonomic<br />

arousal, leading to behavioural changes<br />

and functional disability”.<br />

Lucy Potter with the BTA posters<br />

Gathering perspectives<br />

To the best of our knowledge, individuals<br />

with lived experience of tinnitus were<br />

excluded from developing the proposed<br />

definitions, so the BTA team aimed to<br />

gather perspectives on these definitions<br />

from those with lived experience of tinnitus.<br />

A survey was conducted to explore<br />

participants’ thoughts on the proposed<br />

definitions and arguments set out in the<br />

original paper.<br />

The participants consisted of those with<br />

lived experiences of tinnitus and who were<br />

members of the British Tinnitus Association<br />

(BTA) Consultation Group. Thirty-two people<br />

responded to the survey.<br />

The survey provided the definitions of<br />

tinnitus and tinnitus disorder and other<br />

statements about tinnitus and asked<br />

the participants whether they agreed or<br />

disagreed. Participants were also able<br />

to elaborate on their choice via free text<br />

responses.<br />

14 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

T<br />

Strong views<br />

The results of the survey demonstrated<br />

strong views on the proposed definitions<br />

of tinnitus and tinnitus disorder. 94% of<br />

participants agreed with the definition of<br />

tinnitus compared to 66% of participants<br />

agreeing with the definition of tinnitus<br />

disorder.<br />

The majority of participants agreed with<br />

the definition of tinnitus because they felt it<br />

was factual, clear and broad.<br />

Over three-quarters (78%) of participants<br />

felt the proposed definitions would not<br />

impact on the way they live with tinnitus:<br />

“whatever label is applied to<br />

experiencing tinnitus is irrelevant.”<br />

The definition of ‘tinnitus disorder’ was<br />

disputed by some participants and<br />

some found it inaccessible and difficult<br />

to understand. Areas of disagreement<br />

included:<br />

Whether they had experienced any<br />

changes in behaviour<br />

Whether they had experienced functional<br />

disability<br />

Classing tinnitus as a psychological<br />

problem.<br />

Some strengths of the definition of tinnitus<br />

disorder were recognised: participants<br />

acknowledged that it:<br />

May increase awareness of the condition<br />

Could lead to standardised approaches to<br />

medical care<br />

Acknowledges that tinnitus can have a<br />

wider impact<br />

Recognises it is a serious condition that<br />

can affect everyday life.<br />

Participants felt by excluding their<br />

perspective from the initial proposal of the<br />

definition, the paper was not written with<br />

British Tinnitus Association, Ground Floor, Unit 5, Acorn Business Park, Woodseats Close, Sheffield, S8 0TB<br />

Registered charity no: 1011145 | Company limited by guarantee no: 2709302 | Registered in England<br />

them in mind:<br />

"whilst this paper draws upon many<br />

aspects of medical knowledge […],<br />

it demonstrates seemingly little<br />

understanding of tinnitus from a<br />

sufferer’s perspective, or that of their<br />

family, friends and colleagues."<br />

In summary<br />

A patient perspective on definitions<br />

for tinnitus and tinnitus disorder<br />

Dr Georgina Burns-O’Connell, Lucy Potter, Nic Wray and the British Tinnitus Association Consultation Group<br />

Correspondence: Georgina Burns-O’Connell | T: +44 (0)114 250 9933 | E: georgina@tinnitus.org.uk | W: www.tinnitus.org.uk | T: @GeorgieBOC<br />

Tinnitus definitions<br />

Clinicians and researchers (De Ridder et al. <strong>2021</strong>) recently<br />

proposed a new definition for ‘tinnitus’ and developed a<br />

definition for ‘Tinnitus Disorder’:<br />

• Tinnitus = perception of sounds with ‘no<br />

identifiable corresponding external acoustic<br />

source’<br />

• Tinnitus Disorder = tinnitus with associated<br />

suffering.<br />

Suffering is defined as “emotional distress, cognitive<br />

dysfunction, and/or autonomic arousal, leading to<br />

behavioural changes and functional disability”.<br />

To the best of our knowledge, individuals with lived experience of<br />

tinnitus were excluded from developing the proposed definitions.<br />

Aim<br />

To gather perspectives on the proposed definitions from those<br />

with lived experience of tinnitus.<br />

Methodology<br />

A survey was conducted to explore participants’ thoughts on the<br />

proposed definitions and arguments set out in the original paper.<br />

The participants consisted of those with lived experiences<br />

of tinnitus and who were members of the British Tinnitus<br />

Association (BTA) Consultation Group. Thirty-two people<br />

responded to the survey.<br />

The survey provided the definitions of tinnitus and Tinnitus<br />

Disorder and other statements about tinnitus and asked the<br />

participants whether they agreed or disagreed participants were<br />

also able to elaborate on their choice via free text responses.<br />

Results<br />

The results of the survey demonstrated strong views on the<br />

proposed definitions of tinnitus and Tinnitus Disorder.<br />

94% of participants agreed with the definition of tinnitus<br />

compared to 66% of participants agreeing with the definition of<br />

Tinnitus Disorder.<br />

Tinnitus definition<br />

6%<br />

94%<br />

Agree<br />

Disagree<br />

The majority of participants agreed with the definition of tinnitus<br />

because they felt it was factual, clear and broad.<br />

34%<br />

Tinnitus Disorder definition<br />

66%<br />

Agree<br />

Disagree<br />

Results<br />

The prize-winning poster<br />

The majority (78%) of participants felt the proposed definitions<br />

would not impact on the way they live with tinnitus: “whatever<br />

label is applied to experiencing tinnitus is irrelevant”.<br />

The definition of ‘Tinnitus Disorder’ was disputed by some<br />

participants. Areas of disagreement included:<br />

Whether they had experienced any changes in behaviour<br />

Whether they experienced functional disability<br />

Classing tinnitus as a psychological problem.<br />

Participants argued the ‘Tinnitus Disorder’ definition was<br />

inaccessible, and participants had to read it over a few times<br />

“before getting a grasp of what it is saying”.<br />

Some strengths of the definition of Tinnitus Disorder were<br />

recognised, participants acknowledged that it:<br />

May increase awareness of the condition<br />

Could lead to standardised approaches to medical<br />

care<br />

Acknowledges that tinnitus can have a wider impact<br />

Recognises it is a serious condition that can affect everyday life.<br />

Take-away<br />

It is essential that those with lived experience of<br />

tinnitus are included in developing research proposals<br />

as well as future discussions and research about<br />

defining tinnitus and Tinnitus Disorder.<br />

The debate around the best way(s) to define tinnitus is an<br />

important one, with the outcomes likely to have significant<br />

impacts on how people with tinnitus access healthcare and the<br />

availability of treatments.<br />

If new definitions, classifications, and terms such as ‘Tinnitus<br />

Disorder’ are to be developed, the potential consequences must be<br />

discussed with those who experience tinnitus.<br />

Conclusion<br />

Although the majority agreed with the proposal, the participants<br />

believed the definition of Tinnitus Disorder to be complex and hard<br />

for non-professional people to understand.<br />

Participants felt by excluding their perspective from the initial<br />

proposal of the definition, the paper was not written with them in<br />

mind:<br />

‘whilst this paper draws upon many aspects of medical knowledge<br />

[…], it demonstrates seemingly little understanding of tinnitus<br />

from a sufferer’s perspective, or that of their family, friend and<br />

colleagues’.<br />

The debate around the best way(s) to<br />

define tinnitus is an important one, with<br />

the outcomes likely to have significant<br />

impacts on how people with tinnitus<br />

access healthcare and the availability of<br />

treatments.<br />

It is essential that those with lived<br />

experience of tinnitus are included in<br />

developing research proposals as well as<br />

future discussions and research about<br />

defining tinnitus and tinnitus disorder.<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 15

Treating young pe<br />

Audiologist Megan Hayden discusses<br />

the challenges of seeing a young<br />

person with tinnitus as they<br />

transition to adult services.<br />

The situation<br />

Sixteen-year-old ‘Sarah’ attended our direct<br />

referral clinic for under-50’s. She presented with<br />

normal hearing; her main complaint was tinnitus.<br />

She was identified as requiring further support, but<br />

which support route was the best avenue?<br />

We offer two in-house options for tinnitus support:<br />

the group Tinnitus Education Session (TES) or an<br />

individual appointment. The TES has a number of<br />

benefits that can’t be experienced in a one-to-one<br />

setting such as camaraderie, the opportunity to<br />

identify with others, validation of experience and<br />

symptom/social comparison. However, if a TES is<br />

not suitable, an individual session may be offered.<br />

Technically the transition from paediatrics to<br />

adults can start at 16, but the child/family typically<br />

chooses to delay transition to 18. For this reason it<br />

is unusual to see Sarah's age group in a TES.<br />

An individualised one-to-one appointment was<br />

considered to be the best management option.<br />

Considerations<br />

1. If her age group is not represented in the TES,<br />

would the benefits of the group session be<br />

accessible to Sarah, or could it possibly contribute<br />

to feelings of isolation?<br />

2. Sarah may still benefit from symptom/social<br />

comparison. However, this could potentially cause<br />

health anxiety. Is emotional maturity something to<br />

consider?<br />

3. Sarah was very shy and quietly spoken - would<br />

she feel comfortable raising her own concerns and<br />

opinions, or would she become lost in the group?<br />

Preparation<br />

In preparation, I considered whether I would<br />

approach Sarah's appointment any differently to<br />

that of one of our older patients, but decided that I<br />

would not. My main objectives of the appointment<br />

would remain unchanged. These were:<br />

• to gain understanding and insight into Sarah's<br />

tinnitus, her reaction and feelings towards it<br />

• to understand causal and influencing factors<br />

• to clarify the wider application/potential<br />

impacts to quality of life (sleep, mood, behaviour<br />

changes)<br />

• to provide reassurance and education on<br />

tinnitus/tinnitus management strategies<br />

As in all my appointments, I would need to ensure<br />

that the information (verbal and written) given was<br />

accessible to Sarah.<br />

I consulted two documents, namely the British<br />

Society of Audiology’s Tinnitus in Children Practice<br />

Guidance and the National Institute of Health and<br />

Care Excellence (NICE) guidelines, Tinnitus:<br />

assessment and management, recommendations.<br />

There are no NICE guidelines specific to children/<br />

young people with tinnitus, however, the NICE<br />

guidelines apply to all patients (adults, children<br />

and young people) with tinnitus unless otherwise<br />

stated.<br />

These helped reassure me that I was correct in my<br />

approach. Research available is limited and of<br />

variable quality, but suggests that children with<br />

tinnitus share many similarities to adults with<br />

tinnitus. Like adults, whilst the experience of<br />

tinnitus is common, most children with tinnitus are<br />

not bothered by it, and a simple explanation and<br />

reassurance are all that is required. Only a small<br />

number of children will require further<br />

management to help with distress or impact upon<br />

their lives.<br />

The appointment<br />

My appointment with Sarah aimed to establish the<br />

level of distress and impact upon her and her<br />

16 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

ople with tinnitus<br />

family, ascertain any causal or influencing factors<br />

and begin to plan the management strategy. I was<br />

able to draw upon both the information leaflets<br />

from the BTA for adults and their leaflets for older<br />

children, having taken into account Sarah’s age,<br />

cognitive and linguistic ability and individual<br />

circumstances.<br />

Sarah’s appointment was online, and it was not<br />

easy as Sarah didn’t have a webcam, and the lack<br />

of information from body language/visual cues<br />

made this more counselling style interaction<br />

difficult. Sarah is not naturally very chatty, though<br />

when prompted with questions, was happy to talk.<br />

However, her answers were often short, and did<br />

require further questioning/prompting to get<br />

further information.<br />

I felt any further follow-up appointments would<br />

have benefited from attending clinic and being<br />

seen in person but at the end of this session, Sarah<br />

was happy to be discharged and contact us if<br />

further support was required.<br />

Challenges/reflection<br />

Overall, the goals of the appointment were<br />

achieved, and the outcome was a positive one.<br />

However, there were a number of challenges:<br />

1. Sarah's choice to not have her webcam on/the<br />

lack of visual information. Non-verbal information<br />

is critical in a counselling style appointment, and<br />

without this visual information it was very difficult<br />

to gauge Sarah's understanding.<br />

2. Difference in disclosure/communication style.<br />

During the conversation Sarah was happy to talk<br />

and answer questions asked, but with limited<br />

elaboration unless further prompted. I was<br />

prompting and guiding disclosure/conversation<br />

much more than I am used to in an adult<br />

appointment (despite using open-ended questions)<br />

and it was much less free-flowing than adult<br />

conversation<br />

3 The role of the parent. There seemed to be an<br />

awkward balance between being a dependant, and<br />

wanting independence. It was difficult to know<br />

whether I could share information and make<br />

appointments with the parent, or whether I should<br />

be making it solely with Sarah.It was also unusual<br />

not ‘debriefing’ the parent on what has occurred,<br />

and not seeing the patient as a child.<br />

A colleague shared that from her experience<br />

parent anxiety can be a large contributor, and so<br />

having them attend the management discussion<br />

part of the appointment (with the patient's<br />

consent) can be beneficial.<br />

For our area, our usual signposting to local support<br />

services does not apply to patients under 18.<br />

Should there have been need for further suppot, a<br />

referral to CAMS would have been required.<br />

Picture posed by model. Sarah is a pseudonym.<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 17

<strong>2021</strong> marathon dre<br />

L-R: Louise, Angela, Colette, Richard, Hugo, Helen, Jess, Chloe and Stephan, Neal, Jo and Christina<br />

Christina<br />

“Sunday 3 October<br />

<strong>2021</strong> is a date<br />

I’ll never forget.<br />

I still can’t quite<br />

process how the<br />

hell I did it, but I did.<br />

"Big thanks to my bestie who was by<br />

my side in her car checking in on me.<br />

Thank you to everyone that came<br />

out and joined me during my final 5<br />

miles – they were testing and painful.<br />

I did the run for the British Tinnitus<br />

Association but also for myself: my<br />

hard work and determination have<br />

paid off.<br />

"Never in my life did I ever think I’d get<br />

a medal for completing a marathon, I<br />

feel a bit choked. It’s been an amazing<br />

journey and I’ve met some amazing<br />

people along the way with some<br />

amazing stories. This is just the start<br />

of something new.<br />

"Challenge yourself – it’s the best<br />

feeling ever.”<br />

Hugo<br />

“There was a<br />

real sense of<br />

community and<br />

support on the<br />

day – the crowds<br />

were amazing.<br />

"And it meant so much to see my<br />

family and friends along the course in<br />

London cheering me on!<br />

"I was delighted with my finish time<br />

of 4 hours 4 minutes, especially after<br />

having to take a couple of weeks out<br />

of training just before the event due to<br />

Covid.<br />

"Throughout my training and<br />

fundraising, I found that the cause<br />

really resonated with people – they<br />

either knew someone with tinnitus or<br />

had a personal experience.<br />

"I’m thrilled to have been able to raise<br />

awareness and over £7,400 for a<br />

cause close to my heart.”<br />

18 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

am team!<br />

Inspired to take<br />

on a challenge?<br />

We have 10 places left for the Brighton<br />

Marathon on 10 April 2022 and would<br />

love to help you to achieve something<br />

amazing whilst supporting our work. For<br />

more info and to sign up for a place, visit<br />

www.tinnitus.org.uk/brighton-marathon.<br />

Deadline 28 February 2022.<br />

RideLondon is back for 2022!<br />

Richard<br />

"Congratulations<br />

everyone! This has<br />

been an amazing<br />

journey. A year ago<br />

I was struggling to<br />

cope with my tinnitus<br />

and couldn't see a way forward and<br />

now I've completed a marathon.<br />

Massive thanks to all of you for putting<br />

this together. Bring on next year!"<br />

The Virgin Money London Marathon<br />

was back in person on Sunday 3<br />

October after a long wait.<br />

As 35,871 runners took to the streets of<br />

London, 22,342 virtual runners completed<br />

their 26.2 miles in their local areas,<br />

including our wonderful team of<br />

fundraisers.<br />

As well as successfully completing the<br />

gruelling challenge and raising awareness<br />

of tinnitus in their local areas, our marathon<br />

team raised an incredible £16,269.23 to<br />

support the work we do for the tinnitus<br />

community. A huge well done and thank<br />

you, Team BTA!<br />

The world's greatest festival of cycling<br />

returns on Sunday 29 May 2022, with a new<br />

format and new route, and we'd love you to<br />

join our team!<br />

RideLondon-Essex 100 is a unique<br />

opportunity to ride 100 miles on traffic-free<br />

roads through the heart of London and<br />

neighbouring Essex. By taking part, you'll be<br />

one of 25,000 to complete the new London-<br />

Essex route and one of only five to do it for<br />

the BTA and the tinnitus community.<br />

The entry fee is £65 and the suggested<br />

minimum sponsorship is £500. Visit<br />

www.tinnitus.org.uk/ridelondon-is-back<br />

to find out more.<br />

If you have already secured a place, you'll<br />

be welcome in Team BTA. You'll get<br />

personalised fundraising support and there<br />

is no minimum sponsorship. Email<br />

fundraising@tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 19

I felt resentful<br />

Andrew Smith acquired tinnitus as a result of a severe ear infection. Here he shares how<br />

the condition affects him and his family.<br />

I’ve had tinnitus since May 2018. It was the<br />

result of a severe infection in my left inner<br />

ear which was diagnosed as labyrinthitis.<br />

The illness caused damage to the hair cells<br />

in my cochlear and as a result I suffered<br />

irreparable severe hearing loss and<br />

associated tinnitus.<br />

Like a distant jet engine<br />

I had experienced a mild form of tinnitus<br />

a few times before but this had always<br />

cleared by the following morning. Initially I<br />

didn’t identify the noise in my ear as being<br />

tinnitus. The pain and other symptoms were<br />

so severe that it took me a while to even<br />

realise that I had it! In my case the sound is<br />

always a 'rushing' noise – like a distant jet<br />

engine. It is constant but varies in volume<br />

and is sometimes accompanied by other<br />

sounds – distant church bells being one.<br />

Muddled and forgetful<br />

At the time of the onset I had retired<br />

but was continuing to work part-time<br />

for a friend. Unfortunately I found the<br />

labyrinthitis symptoms – not least the<br />

tinnitus - caused me to become muddled<br />

and forgetful when carrying out relatively<br />

simple tasks and I resigned from my<br />

role. I felt resentful that my tinnitus had<br />

prevented me from continuing in a job<br />

which I had found enjoyable.<br />

The combination of tinnitus and deafness<br />

sometimes causes me to feel irritable<br />

and short-tempered. This can obviously<br />

have a negative effect on family life. As<br />

Andrew Smith<br />

understanding as my wife is, she also has<br />

to live with it through me, and I know that<br />

isn’t easy for her.<br />

I attended the A & E department of our local<br />

hospital when my symptoms became really<br />

acute but I didn’t feel the seriousness of my<br />

condition was recognised by the clinician. I<br />

visited my GP a few days after this and he<br />

was able to get me a prompt appointment<br />

with an ENT consultant, who told me<br />

that I was suffering from severe 'classic'<br />

labyrinthitis.<br />

The damage had been done<br />

Following examination, he said that my<br />

hearing may improve slightly with time but<br />

really the damage had been done. Up to this<br />

point, I had assumed the tinnitus and the<br />

hearing loss was part of the acute phase<br />

which would improve as part of the healing<br />

process. So the consultant’s rather final<br />

20 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

tone came as quite a shock.<br />

Although the symptoms of my condition<br />

were discussed, the tinnitus element didn’t<br />

seem to figure to any great extent. It was<br />

only when I went to be assessed for a<br />

hearing aid by an audiologist that it was<br />

suggested this may also help to reduce the<br />

tinnitus.<br />

The consultant referred me to a Hearing<br />

Therapist and I have continued to have<br />

contact with her for over two years<br />

although our sessions have had to be by<br />

phone for more than a year due to Covid-19.<br />

Having time to talk<br />

Having time to talk to someone with<br />

knowledge of tinnitus has most definitely<br />

been helpful. A range of techniques to<br />

help me live with my tinnitus have been<br />

discussed, including relaxation, when<br />

it may not be helpful to wear a hearing<br />

aid, and habituation (a rather important<br />

sounding word that means “getting used to<br />

it”).<br />

My Hearing Therapist suggested that I join<br />

the BTA. I found the information helpful:<br />

it was important for me to know that<br />

many other people were having similar<br />

experiences to mine. I would certainly<br />

encourage anyone who has tinnitus to join<br />

the association.<br />

Working hard<br />

From what I have read, many people with<br />

tinnitus have experienced a dismissive<br />

response from health professionals, and<br />

the BTA is working hard to turn this around.<br />

It is often difficult when you feel that you’re<br />

a lone voice to make that voice heard.<br />

I felt quite hopeless when the full impact<br />

of my condition became clear and I am<br />

pleased with what I have achieved since. An<br />

enjoyable and absorbing activity certainly<br />

helps me to deal with tinnitus. Just how<br />

well I do deal with it varies a lot – the<br />

pandemic has certainly not helped. I feel<br />

my experience of the last three years has<br />

been mixed: it would have been helpful<br />

if it had been explained that hearing loss<br />

is often accompanied by tinnitus. Talking<br />

about it to someone who understands most<br />

definitely helped me.<br />

When tinnitus is first experienced, it can<br />

so easily cause someone to feel helpless,<br />

hopeless and desperate, but there are ways<br />

in which help can be effectively provided. I<br />

feel the BTA is doing a good job in helping to<br />

provide support where it matters.<br />

Share your own story<br />

Whether you're new to tinnitus or have<br />

had it for many years; whether you're<br />

managing it well or finding it all a bit of<br />

a struggle, your story could help us to<br />

reach more people, and potentially<br />

make a difference to their lives.<br />

Don't worry — you'd have control over<br />

how, when and where we share your story<br />

and we'll help you put it together — no<br />

writing skills needed!<br />

We are especially looking for:<br />

• people based in Wales or in<br />

Scotland<br />

• people with musical hallucination<br />

• people from minority ethnic<br />

backgrounds<br />

who are willing to help us and become<br />

one of our story tellers.<br />

If this is something you'd be interested<br />

in, please get in touch with Nic Wray on<br />

nic@tinnitus.org.uk or write to her at Nic<br />

Wray, FREEPOST BTA (no stamp needed).<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 21

To beat tinnitus, accept it<br />

Sash Dublish shares his experience of living with tinnitus and hyperacusis.<br />

My tinnitus journey started in September 2018<br />

following a manual cleaning of ear wax, though I<br />

believe tinnitus was inevitable due to exposure to<br />

loud music over the years - the ear wax cleaning<br />

was just a trigger.<br />

I thought nothing of it<br />

My tinnitus started fairly low, so I thought nothing<br />

of it and really continued life as normal. I was<br />

DJing, going to nightclubs and using headphones,<br />

although I was a little more cautious. Gradually<br />

each loud event would make my tinnitus worse,<br />

even though I went to events only three or four<br />

times a year.<br />

In July 2019, I started experiencing hyperacusis<br />

following a house alarm. Initially I was really<br />

annoyed at myself, but it couldn’t have been<br />

avoided. I have a number of physical symptoms<br />

with hyperacusis and it sometimes accentuates<br />

the tinnitus.<br />

I can hear it everywhere<br />

Currently, my tinnitus is so loud – it feels around<br />

90 decibels. I can hear it everywhere including<br />

the shower. My hyperacusis has improved but<br />

all sounds are louder. I still have symptoms like<br />

sensitivity, ear flutter and ear burning. Apart from<br />

very loud noises, I have noticed my hyperacusis<br />

and tinnitus get a lot worse due to wind speed,<br />

when I experience intense migraines, fatigue and<br />

nausea the next day.<br />

Unfortunately, due to tinnitus I have had to give up<br />

the activities I love like going to football matches,<br />

nightclubs, music festivals, DJing and using<br />

headphones. That has been the hardest part - it<br />

has curtailed my social life significantly. Even<br />

an outdoor music festival worsened my tinnitus.<br />

Taking flights is hazardous due to changes in air<br />

pressure.<br />

I used to wear earplugs when shopping or driving<br />

but I hardly wear them now, which I think has<br />

helped as I am not so anxious about loud sounds. I<br />

Sash Dublish<br />

am trying very hard not to focus on sound. Anxiety<br />

exacerbates my perception of tinnitus.<br />

When I am busy, I do not hear my tinnitus even<br />

though it is so loud and noticeable. I do hear it in<br />

bed very loudly but luckily most times I am able<br />

to nod off easily. I find some form of pink noise<br />

doesn’t necessarily mask it, but it helps me sleep<br />

better.<br />

I am starting to meditate<br />

I am starting to meditate – it’s still early days but<br />

I can see why for some people it could help to<br />

distract the mind from the sound of tinnitus.<br />

To beat tinnitus, accept it and try not to think<br />

about it – I know, more easily said than done! Keep<br />

busy and distracted. There will be ups and down:<br />

please do not blame yourself for spikes which will<br />

inevitably happen from time to time.<br />

It also helps to talk to people about tinnitus. I have<br />

a very good Audiologist and is just nice to speak<br />

to someone who understands the condition, even<br />

though there is no cure. I am also about to start<br />

Tinnitus Retraining Therapy soon.<br />

22 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

Living happily with<br />

tinnitus<br />

Andrea White didn't know if she could<br />

live with tinnitus at first, but her<br />

story has a happy ending.<br />

Waking up one morning in late 2015 with an<br />

intrusive high-pitched hiss in my head was a<br />

surprise, but I soon realised this must be tinnitus<br />

and my existence quickly became tortured by it.<br />

I thought my hearing was good<br />

My GP confirmed it, said I’d have to get used to it<br />

and re-directed me to Audiology, where a hearing<br />

test showed I had some loss of hearing at the top<br />

levels, which was news to me as I thought my<br />

hearing was good. Hearing aids were prescribed,<br />

which I accepted, although secretly I thought I was<br />

much too young to wear them, so I put them aside<br />

and ignored them. I wasn’t too young of course,<br />

and it was a big mistake not to take them on.<br />

The long journey to find a cure<br />

I thought I knew best and set out on the long<br />

journey to find a 'cure'. Research on the internet<br />

revealed that many people had tried many<br />

different things, almost all of which had no real<br />

effect. In addition, medical researchers were<br />

beginning to see this condition as a neuronal<br />

disorder in the auditory cortex with various causes.<br />

With this in mind my first experiment was to<br />

have a course of repeat transcranial magnetic<br />

stimulation (rTMS]. This cost a lot of money and<br />

had no effect on my neurons.<br />

Be in the moment<br />

My second experiment was of a psychological<br />

nature where I had a series of meetings with a<br />

psychologist who helped me to 'be in the moment'<br />

with my life and its activities. With this new<br />

'mindfulness' tool, I began to notice things a lot<br />

more and this strategy effectively diverted my<br />

Andrea White<br />

thoughts and attention away from the tinnitus,<br />

the noise of which became subdued and often<br />

disappeared.<br />

Almost 100% free of the noise<br />

I also decided to give the hearing aids a try and,<br />

amazingly, the recovery of the high-pitched<br />

sounds I was missing seemed to completely wipe<br />

out any residual tinnitus noise. I am now almost<br />

100% free of the noise of tinnitus, I hear it briefly<br />

when I awake, but it disappears within minutes<br />

as I focus on other things.<br />

My life now has changed completely, from those<br />

early days of fear and unhappiness where I<br />

thought I’d be on anti-depressants forever, to a<br />

normal, busy, happy existence where I am able<br />

to immerse myself in and thoroughly enjoy my<br />

activities and life generally.<br />

The experts were right<br />

In the beginning I was told that I would have to<br />

habituate to tinnitus – the experts were right, you<br />

just have to find your way to achieving it, and I<br />

hope that my experience will help.<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 23

Paul's story: I thought it was<br />

game over for my music career<br />

By day, Paul Pearson is one of the team of printers who print <strong>Quiet</strong> magazine.<br />

But he also has another passion - music. How does tinnitus affect this?<br />

Hello, my name is Paul Pearson. I’m a<br />

DJ, radio DJ, music producer and a litho<br />

printer by day. As you can probably guess,<br />

I’m also a tinnitus sufferer. I've been a<br />

printer by trade for 20 years, and a DJ for<br />

even longer.<br />

As a DJ and weekly clubber since before<br />

the Millennium, I've spent a lot of time in<br />

night clubs and bars and didn't protect my<br />

ears. I would say I've had tinnitus since<br />

the mid-2000s at a guess.I would wake<br />

up from gigs or nights out with ringing<br />

ears and think, "It's ok, it will pass," which<br />

it usually did until one time it didn’t and it<br />

has never gone away.<br />

I attended a club night in Sheffield and<br />

the sound system was terrible, very top<br />

heavy and harsh on the ears. When I woke<br />

up the following day, the ringing I was<br />

used to hearing never stopped.<br />

My tinnitus mainly bothers me in quiet<br />

spaces. As I work in a loud environment,<br />

it's also hard to hear some days. More<br />

recently, I have been noticing it with my<br />

earplugs in and I definitely notice it in the<br />

studio when I have my headphones on<br />

and no music playing. The enclosure of<br />

headphones can be unbearable at times.<br />

Although I will not give in to my tinnitus<br />

and stop doing what I love, it’s certainly<br />

getting worse as time goes on.<br />

My tinnitus is quite high frequency, like<br />

bad white noise and ringing. Bizarrely,<br />

Paul with a BTA appeal letter on press!<br />

sometimes I can hear voices like a family<br />

member speaking to me or words being<br />

spoken. It doesn’t affect my family life<br />

but my little girl can be loud at times and<br />

has shouted a few times in my ears which<br />

can be painful. Laying in bed at night is<br />

definitely the worst if I concentrate on my<br />

tinnitus.<br />

In 2008, I visited my local hospital after<br />

speaking to my GP where I went into a<br />

soundproof room to test my hearing, which<br />

was unbearable! The end result was I that<br />

I have lost some hearing.Nothing else<br />

was really suggested back then or any<br />

help other than a hearing aid white noise<br />

generator, which at 27 did not go down well<br />

24 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

with me and I left quite frustrated. I’m quite<br />

a strong-willed person so I just decided to<br />

learn to live with it and maybe look at some<br />

sort of treatment in the future as I get older<br />

and technology advances, or I may look at<br />

alternative therapies.<br />

One thing that does help me and has for<br />

the past few years is meditation. I meditate<br />

daily and that time out does help calm the<br />

mind in today's busy world.<br />

When my tinnitus started, I thought it was<br />

game over for my music career, that I would<br />

have to give up DJing and producing music.<br />

Luckily this has not been the case and it's<br />

pushed me to work harder. Pre-pandemic, I<br />

still had regular gigs and one good thing to<br />

come out of lockdown is a regular slot on<br />

LDC Radio in Leeds. My hobby is not ideal<br />

for a tinnitus sufferer, but I refuse to let this<br />

get in my way.<br />

The ironic part of my story is I first found<br />

out about the BTA through my job as<br />

a printer. I have regularly printed the<br />

magazine you are reading for many years.<br />

Apart from the writers and editors, I’m<br />

usually the first to read it! The BTA has<br />

helped me get a lot of insight into tinnitus<br />

and see I’m not alone.<br />

My plans for the future are keep on with my<br />

music as I’ve been in love with dance music<br />

since the mid-90s. Music is in my soul and I<br />

refuse to let this condition stand in my way.<br />

Hopefully in the future we will see a<br />

breakthrough in medicine or therapy for all<br />

tinnitus sufferers, but my word of advice<br />

to everyone is wear earplugs! I wish I could<br />

go back in time to speak to the 20-year-old<br />

me and stress the importance of earplugs.<br />

I wear my ACS plugs everyday and think<br />

every music fan needs to invest in a pair.<br />

Look after your hearing: you only get one<br />

set of ears!<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 25


Each of these products will not only help you, but each purchase will<br />

help support the work that we do for people with tinnitus.<br />

CDs and audio<br />

We offer four hour-long noise CDs, each of which feature a different waveform<br />

sound (white, pink, brown or purple).<br />

Our best-seller ‘Sound of the Sea on Deal Beach’ is available in CD or memory<br />

stick form. This features the sound of the sea coming in on a pebble beach,<br />

which can be a useful, calming aid to relaxation.<br />

See our range in our online shop at www.tinnitus.org.uk/shop.<br />

Bone conduction<br />

headphones<br />

Bone conduction technology uses vibrations through your cheekbones to<br />

deliver sound directly to your inner ear (cochlea), bypassing the eardrum. This<br />

means you can still hear the world around you whilst using sound as a form of<br />

distraction and relaxation for your tinnitus.<br />

Our partnership with Sport Rewards means we can offer preferentially priced<br />

AfterShokz headphones to BTA members.<br />

Sport Rewards will also donate 10% of the purchase price of products* bought<br />

via www.sportrewards.co.uk/collections/bta to the BTA.<br />

Ear plugs and<br />

ear defenders<br />

Sound therapy<br />

systems<br />

We only have one pair of ears, and they have to last us a lifetime. Damage to<br />

hearing caused by noise is irreversible. The risk of damage is dependent not<br />

only on the volume of the noise, but the length of time you’re exposed to that<br />

noise.<br />

To minimise your risk of damage, always wear hearing protection in a noisy<br />

environment. Buy ear plugs or ear defenders that are made for the task –<br />

cotton wool or sticking your fingers in your ears won’t do anything to help!<br />

You can see our range of hearing protection – which includes ear defenders for<br />

babies and young children- in our online shop at www.tinnitus.org.uk/shop.<br />

Sound therapy systems play high quality digital recordings of real, natural<br />

sounds and/or carefully designed neutral sounds. You can choose the sound<br />

or sounds that work best for you. Sound pillows or under pillow speakers mean<br />

you can surround yourself in sound without disturbing a companion.<br />

We are working in partnership with Puretone to provide preferentially priced<br />

sound therapy systems and pillow speakers to BTA supporters and members.<br />

Puretone will also donate 10% of the purchase price of products* bought via<br />

www.puretone.net/btashop to the BTA.<br />

*excluding postage costs<br />

26 www.tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three

Local Support Group<br />

Volunteers Needed!<br />

Are you looking for a<br />

tinnitus support group in<br />

your area? Are your local<br />

group meetings on hold?<br />

If you would like to help revive<br />

your local group or start a<br />

new one in your area, please<br />

get in touch with Emily<br />

Ducker on emilyd@tinnitus.<br />

org.uk or call 0114 250 9933.<br />

Online Tinnitus &<br />

Hyperacusis Group!<br />

Wednesday 19 January<br />

7.00-8.30pm.<br />

www.tinnitus.org.uk/<br />

online-support-groups<br />


CYMRAEG?<br />

The BTA is expanding its online<br />

tinnitus support group offering<br />

with a Welsh-speaking group!<br />

We hope to get it up and<br />

running in the New Year, but<br />

we need your help.<br />

If you are fluent in Welsh and<br />

would be interested in cofacilitating<br />

or helping in the<br />

background as a volunteer,<br />

please get in touch with Emily<br />

at emilyd@tinnitus.org.uk<br />

Why not become<br />

a helpline<br />

volunteer? Full<br />

training provided<br />

Contact emilyd@<br />

tinnitus.org.uk<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Three www.tinnitus.org.uk 27


Scotland<br />

Edinburgh & SE Scotland<br />

Forth Valley<br />

Glasgow<br />

Highlands<br />

Northern Ireland<br />

Belfast<br />

Craigavon<br />

Enniskillen (on hold)<br />

Newry & Mourne<br />

Omagh (on hold)<br />

RNID Northern Ireland<br />

Western (Londonderry)<br />

North-West England<br />

& Isle of Man<br />

Aintree (on hold)<br />

Blackpool (on hold)<br />

Bolton<br />

Cumbria<br />

Garstang (on hold)<br />

Isle of Man<br />

Kendal (on hold)<br />

Manchester<br />

Prestwich<br />

St Helens<br />

Stockport (on hold)<br />

Widnes<br />

Wales<br />

Cardigan<br />

Newport<br />

Pontyclun<br />

Pontypridd<br />

Rhondda<br />

Swansea<br />

Ystradgynlais<br />

(on hold)<br />

(on hold)<br />

(on hold)<br />

(on hold)<br />

South-West England<br />

Bournemouth (on hold)<br />

Bristol (on hold)<br />

Gloucester (on hold)<br />

Kingsbridge &District<br />

Mid-Somerset (on hold)<br />

South West England<br />

Taunton (on hold)<br />

Truro<br />

South-East England<br />

Aldershot & District<br />

Amersham<br />

Ashford, Kent<br />

Basingstoke<br />

Brighton<br />

Canterbury<br />

Crowborough<br />

Dover<br />

Faversham<br />

Harpenden (on hold)<br />

H'wards Heath (on hold)<br />

Hitchin (on hold)<br />

Isle of Wight (on hold)<br />

Maidstone<br />

Marlow/Farnham Common<br />

Oxford (on hold)<br />

Pembury (West Kent)<br />

Rochester<br />

Salisbury<br />

Southampton (on hold)<br />

Thanet<br />

Worthing (on hold)<br />

West Midlands<br />

Birmingham & District<br />

Newcastle under Lyme<br />

Shrewsbury<br />

Stoke on Trent<br />

Telford<br />

Warwick<br />

Whitchurch<br />

As we go to press, some groups<br />

may be planning to hold physical<br />

meetings.<br />

Find out when and where these<br />

groups are meeting by checking<br />

the Support Groups Directory<br />

online at bit.ly/TSGTT or contact<br />

us on 0800 018 0527 or<br />

helpline@tinnitus.org.uk.<br />

We will ensure these groups have<br />

the tools to do so safely.<br />

North-East England<br />

Chester-le-Street<br />

Darlington<br />

Newcastle<br />

North Tyneside<br />

Seaham<br />

Yorkshire & Humber<br />

Bradford<br />

Brighouse NEW!<br />

Keighley<br />

Rotherham<br />

Ro'ham Central (on hold)<br />

Sheffield (on hold)<br />

York<br />

East Midlands<br />

Chesterfield<br />

Derby<br />

(on hold)<br />

Leicester (on hold)<br />

Lincoln (on hold)<br />

Northampton<br />

East of England<br />

Bury St Edmunds<br />

Cambridgeshire<br />

Chelmsford<br />

Ipswich (on hold)<br />

King's Lynn<br />

Lowestoft (on hold)<br />

North East Essex<br />

Norwich/Norfolk<br />

Southend-on-Sea<br />

London (within M25)<br />

Bexley<br />

Boreham Wood<br />

Bromley<br />

Chiswick (on hold)<br />

Greenwich<br />

Hornchurch<br />

Isleworth (on hold)<br />

Kingston<br />

North London<br />

Orpington<br />

Redbridge & Hackney<br />

Key<br />

BTA Gold Standard group<br />

Meeting online

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