Quiet Issue 3 2019

QUIET
Issue Three 2019
40
1979 - 2019
Celebrating 40 years of the BTA
All the usual
news and
features
inside!

Corporate members
AfterShokz Bone
Conduction
Headphones
All Ears
Hearing Ltd
Amplifon Ltd
AngliEAR Hearing and
Tinnitus Solutions
Audify Ltd
Audiological
Specialist
Care Ltd
Aurio Ltd
Autifony
Therapeutics
Ltd
Bloom Hearing
Specialists
British
Academy
of Audiology
British Society
of Audiology
Cardiff
Hearing Ltd
CAuRES Hearing Aid
Solutions
Chester
Hearing and
Balance
Services
Cubex Ltd
EarDial
Earplug Hub
Geraint Davies
Hearing Ltd
Guymark UK
Limited
Halo Hearing
Solutions
Harley Street
Hearing
Pink outline =
Expo/Conference
exhibitor
Hear
Again
Ltd
Hearing Aid
Solutions
Hearwell
Ltd
Help in
Hearing Ltd
Hidden Hearing
HiKent
HL Healthcare
Ltd
Isabella Fisher
Independent
Hearing Care
Isle of Man
Hearing Solutions
Leightons
Opticians and
Hearing Care
Mary Hare
Hearing Centre
MC Hearing
Neuromod
Devices Ltd
Oakwood
Solicitors
Oticon
Peter Byrom
Audiology Ltd
Puretone Ltd
Ridgways
Hearing
Centre
Scrivens Hearing
Care
Sivantos Ltd
Sonova UK
Limited
Sound Advice
Hearing Centres
Specsavers
Optical Group
Starkey Hearing
Technologies
The Hearing
Care Centre
The
Hearing
Coach
The Invisible
Hearing
Clinic
The
Outside
Clinic
Tinnitus
E-Programme
The
Tinnitus
Clinic
Tripp Hearing
Widex UK Ltd
Barnsley Hospital
NHS Foundation
Trust
Chesterfield Royal
Hospital NHS
Foundation Trust
Doncaster and
Bassetlaw Hospitals
NHS Foundation
Trust
East Kent
University 2 Hospitals
NHS Foundation
Trust
Nobles Hospital
North Lincolnshire
and Goole NHS
Foundation Trust
Royal Berkshire
NHS Foundation
Trust
Royal Cornwall
NHS Foundation
Trust
Sandwell and
West Birmingham
Hospitals NHS
Trust
Torbay and South
Devon NHS
Foundation Trust
Worcestershire
Acute Hospitals
NHS Trust
2
www.tinnitus.org.uk
QUIET 2019 Issue Three

News 4-7
Tinnitus guidelines - have your say
A pill for tinnitus? What's the real
story?
Funding tinnitus research: looking for a
cure
Events 8-12
Tinnitus Expo
Annual Conference
Research 13-18
Assessing health information online
Tinnitus & the anticipation hypothesis
40
years
of the
BTA
A picture
special across
the centre
pages
QUIET
Volume 30 Number 3 ISSN: 0968-1264
Features 23-26
The BTA Helpline
Musical hallucination
Protecting your hearing at festivals
Fundraising 22,27
How you can help the BTA.
Safe Around Sound 28-29
Our exciting new campaign
The decision aid for tinnitus one year on
CBT for tinnitus-related insomnia
Real lives 30-35
Read how three people are living with
tinnitus. Plus your letters!
Membership 36
New ways to support the BTA
Support groups 38-39
New groups and full listing
Contacts
Our Vision:
A world where no one suffers from tinnitus
Our Mission:
Research: We want a cure, we will drive & demand progress
Help: We want everyone to know what tinnitus is, how to
prevent it & how to manage it
tinnitus.org.uk
Editor
Nic Wray
nic@tinnitus.org.uk
Address
British Tinnitus Association, Ground Floor, Unit 5, Acorn
Business Park, Woodseats Close, Sheffield, S8 OTB
Registered charity no: 1011145. Registered in England.
Helpline
0800 018 0527
Whilst the British Tinnitus Association makes every attempt to ensure the accuracy & reliability of information in this magazine, it is
not a substitute for medical advice. You should always see your GP/ medical professional. Advertisements for organisations, products
or services do not imply endorsement of them by the British Tinnitus Association.

TINNITUS
GUIDELINES
- have your say!
The National Institute of Health and Care
Excellence (NICE) provides expert guidance
for clinical practice, which is adopted by
healthcare professionals.
NICE is currently working on a set of
guidelines for the treatment of tinnitus. The
BTA is a stakeholder in these guidelines,
and we have been invited to offer feedback.
4
To do this, we want to ensure our views
reflect the views of people with tinnitus —
that means you!
Some numbers!
13% of adults have persistent tinnitus
1.05 million GP consultants for tinnitus
take place in the UK every year. That's:
• 4,000 every working day
• 8.5 every minute of a working day
Tinnitus costs the NHS £750million per
year.
The draft guidelines are due to be published
on 20 September, but we won't have a lot
of time to gather feedback, so we're getting
4
everything ready now, and giving you
advance notice.
As soon as the draft guidelines are
available, we'll circulate a link to them, and
also to our online survey for feedback.
www.tinnitus.org.uk
We will then use your comments in our
official response to NICE, which will be
available to all on our website from late
October.
Get involved!
Check our social media streams for
the latest news, and links to the draft
guidelines and survey.
www.facebook.com/
BritishTinnitusAssociation
www.twitter.com/BritishTinnitus
Sign up for email updates and Focus
newsletter — you can do this by going
to www.tinnitus.org.uk and clicking
'Contact us' or give us a call on 0800
018 0527.
Come along to our Expo, and sign up to
our session on the guidelines.
QUIET 2019 Issue Three

What's the real story?
You may have recently seen the headlines
in your newspaper or online along the lines
of “New breakthrough pill could cure
tinnitus”. This is game-changing news if
true – so what’s the real story behind the
headline?
The headlines were in response to an article
published in the journal PLoS Biology. A
research team from the University of
Arizona have suggested that
neuroinflammation (inflammation within
the brain or spinal cord) may cause tinnitus.
Inflammation is the body’s response to
damage or infection, so noise-induced
hearing loss (NIHL) could cause
inflammation in the auditory pathway,
triggering tinnitus.
To investigate this idea, researchers looked
at mice who had NIHL and tinnitus. These
mice had higher levels of molecules and
cells known to be involved when
neuroinflammation occurs. One of these
molecules is called tumor necrosis factor
alpha (TNF). When the researchers
deactivated the gene responsible for TNF,
they found that no neuroinflammation was
present, and the mice no longer showed
signs of tinnitus. When TNF was blocked
using drugs in another group of mice, they
didn’t show signs of tinnitus after being
exposed to loud noise. To double-check the
connection, further groups of mice received
infusions of TNF, and this was shown to
trigger tinnitus.
Now, this is where the stories and the
headlines depart somewhat. In order for
there to be a pill for tinnitus, these results
need to translate over to humans, and work
on this has not yet been carried out.
Although there are a number of drugs that
block TNF in humans, each would need to
be rigorously tested. This process could
take a number of years. ENT surgeon Don
McFerran warned: "Unfortunately,
optimistic animal research does not always
translate into success in humans”.
Sadly, whilst this study is interesting, the
headlines around it were somewhat
misleading. We look forward to further work
happening to follow up these results, but
the breakthrough treatment we’re all
hoping for is still some way off.
Fact box
TNF is a chemicial produced by many
cells in the body, contributing to normal
body processes.
TNF is particularly involved in
processes related to the immune
system, such as fighting off infections.
Abnormal TNF activity is thought to
contribute to certain diseases.
There are a number of anti-TNF drugs
currently available, but the ones we
have do not seem to help tinnitus.
QUIET 2019 Issue Three www.tinnitus.org.uk 5

Funding tinnitus resea
Our vision is a world where no one suffers
from tinnitus. Current treatment options,
whilst effective at improving quality of life
and reducing distress, leave many people
living with tinnitus dissatisfied. “We need a
cure” is a comment we hear often. People
with tinnitus want their tinnitus loudness
reduced and many of you would prefer a
drug-based solution over other options.
Over the last few years, there have been a
number of drugs trials that have ultimately
failed, but have been useful as they have
showed us what is needed to develop a
cure. We have been in discussions with
many of the companies involved in these
trials, learning the lessons and gaining a
better understanding of what is needed to
push forward drug development work for
tinnitus.
We have captured the learning of this in
a paper, ‘Why haven’t we cured tinnitus?’
(McFerran et al, 2019, in press) which also
includes the Map of Tinnitus Research,
conceived by us to look at how to progress
towards a cure. There have been a number
of papers recently, all pointing in the same
direction in terms of what is needed for a
cure.
What are we doing about it?
The Map of Tinnitus Research has
allowed us to identify potential research
areas and gaps. From this learning, we
have determined the following research
priorities, which will shape the research we
look to fund in the future:
• Identification of tinnitus biomarker(s)
• Development of reliable, testable
measure(s) of tinnitus
• A better understanding of animal models
of tinnitus and their relevance to human
tinnitus research
• Recognition that tinnitus is a very varied
condition and development of strategies
to manage that variety in a research
environment
• Identification of subtypes of tinnitus
By publishing these goals, working
collaboratively with the research and
clinical community, we can ensure that
promising targets are investigated.
We have already formed a working
partnership with three academic
institutions to progress research in one of
our identified priority areas, and we hope
to announce details of our first project
soon. Others are in the pipeline.
However, in order to progress research
from discussion to the laboratory or clinic,
money has to be found. There is a striking
differential in tinnitus funding compared
to other conditions experienced by similar
numbers of people and with a similar
impact. Although we do not have the
resources to address this imbalance, we
are pleased to be able to announce that we
are opening two research funding rounds
to make sure that this vital research
happens.
What funding is available?
There will be two funding streams
available.
Large Research Grant programme
Thanks to generous gifts in Wills, there is
up to £125,000 available to be spent on
a research project (or projects) that best
meet our agreed research priorities. This is
the largest grant funding round announced
6 www.tinnitus.org.uk
QUIET 2019 Issue Three

ch: looking for a cure
by the BTA. The fund may
be spent on one project,
or distributed across
more than one.
Small Research Grant
programme
Up to £10,000 per year
is available for the next
three years for smaller
projects which meet
our research priorities.
In addition, we will
also consider projects
looking to develop ‘a
novel approach to curing
tinnitus'. The fund may
be spent on one project,
or split across more than one.
opportunities to participate in research.
What happens next?
We will formally launch the calls for bids for
both programmes in the next few months.
Final decisions for the Small Research
Grants will be made in November, with the
successful project(s) in the Large Research
Grant programme announced in May 2020.
How can I help support
tinnitus research?
All our work is paid for by donations and
grants from members and supporters.
Every little contribution makes a difference
– see how to donate on page 22. Or further
ahead, leaving a gift in your Will could really
help – over half our funds for research
come from gifts in Wills.
You can also support research with time,
rather than money. Keep a look out on our
website and social media, as we publicise
What does the future hold?
We don’t know when a cure for tinnitus
will come. We do know that momentum
is building, and that there is every reason
to believe that a cure is possible. We will
unceasingly drive tinnitus research forward
until our vision is achieved. And of course,
we will continue to support people with
tinnitus and those caring for them.
Further information
If you would like to be kept in touch with
news about the launch of the funding
rounds, the winning applications and
research news in general, please sign up for
our monthly newsletter Focus by visiting
www.tinnitus.org.uk and clicking the
‘Contact us’ button.
QUIET 2019 Issue Three www.tinnitus.org.uk 7

Following on from a sell-out event in
Birmingham in 2018, the Tinnitus Expo will
be back this September, bringing the same
mix of expert specialist talks, hands-on
taster sessions, exhibitors and support.
The Tinnitus Expo will feature 70% new
and updated content for 2019.
The Expo is designed to be a drop-in event
where you are welcome to stay as long as
you wish with a programme that repeats
throughout the day. This allows you to take
in a mix of everything on offer, regardless
of the entry time you book.
Talks
• Tinnitus research round-up
• Tinnitus & hearing aids
• The BTA & future research
• Healthcare pathways: treatment
choices
• Why haven't we cured tinnitus
yet?
• Hyperacusis, misophonia, sound
sensitivity explained
• CBT for insomnia: tinnitus & sleep
• Counselling for tinnitus
• Understanding habituation
Talks will run between 10.00am - 12.00pm;
1.00 - 3.00pm; 4.00 - 5.00pm
Tasters
There will be the chance to try some of our
practical 'hands-on' taster sessions at the
Expo — they are all things which have been
recognised to help manage tinnitus and
better enable you to cope.
Relaxation
Many people say that relaxation is one of
the main strategies they use to manage
their tinnitus, but most people don’t relax
instinctively, it is a skill that needs to be
learned and practised.
These
introductory
sessions
will give the
opportunity to
get a flavour
of how they
can help and
start to unpick
the effects of
modern life.
Exhibitors
New for
2019!
• Mindfulness-based
CBT
• Tai Chi
• Guided meditation
+ more to be announced
At the very heart of the Expo will be
our Exhibition Hall, where you will have
the opportunity to browse a mixture of
products, devices, information and advice.
We know that there are a lot of things on
the market which can claim to cure tinnitus
8 www.tinnitus.org.uk
QUIET 2019 Issue Three

and we wanted to create a space where
you can see for yourself, without risk or
pressure, exactly what is out there and
recommended for tinnitus. We promise
there will be no pills or tablets, just sound
advice from professionals in the know.
1-2-1 Tinnitus
Adviser
Appointments
Book time with BTA staff in our free
advice clinics. These sessions allow
visitors to have a free 20-minute
appointment: our on-hand advisers have
a wealth of experience and knowledge to
share.
It is important to note in these sessions we are
unable to give medical advice or make referrals.
NEW! for 2019:
Networking suite
Your feedback told us you wanted more
opportunities to "just talk to someone like
me" and so we are running three facilitated
networking sessions during the day where
you will have the opportunity to chat with
others attending the Expo.
There are plenty of social spaces for people
to talk, but for those who prefer a bit more
structure, our facilitated sessions will be
based on different topics you've told us
matter to you:
• Self-help strategies: practical advice
when out and about
• Working world: ways of coping in the
work environment
• Calm in chaos: tips for reducing stress
NEW! for 2019:
Living with tinnitus
For those who support someone with
tinnitus, put yourself in their shoes and
gain an understanding of the impact it can
have on day-to-day life with our tinnitus
simulation experience.
Take a walk around the Expo with tinnitus
sounds in your ears and experience how
your focus and ability to concentrate
changes or how tinnitus can make
conversation difficult as can an increased
sensitivity to sounds around you.
Tinnitus is complex and the experience
of it is different for all, so we can't tell
QUIET 2019 Issue Three www.tinnitus.org.uk 9

everybody's story, but we hope through
experiencing what living with tinnitus can
be like you'll gain a better understanding.
The living with tinnitus experience uses
specially designed headsets which can be
booked on a first come, first served basis
from the BTA stand on the upper level of
the Exhibitor Hall.
NICE Guidelines
consultation
The National Institute for Health and Care
Excellence (NICE) has developed guidelines
for the assessment and management of
tinnitus. There is a consultation period
where stakeholders can respond to the
guidelines. There will be an opportunity at
the Expo for the tinnitus community to give
their comments on the guidelines for the
BTA to incorporate into our official response
to NICE.
Headline Panel Session
Our headline session — join our panel
consisting of comedian and BTA
Ambassador Samantha Baines, DJ Anne
Savage, musician James Kennedy and TV
presenter Ricky Boleto — in conversation
discussing their experiences of living with
tinnitus in careers you might initially think
they'd avoid.
There will be an open floor for you to ask
your questions!
Find out more about our panel at www.
tinnitus.org.uk/headliners
Clockwise from top left: Samantha Baines; Ricky
Boleto; Anne Savage; James Kennedy
What else should I know?
There are two entry times for the Expo —
9.00am and 12.00pm — once in you can
stay as long as you wish as you browse the
content which interests you most. Talks and
tasters are repeated throughout the day,
so you should get plenty of opportunity to
catch the sessions you want to.
We recommend you buy your tickets in
advance as whilst we hope to have on-the
-day access, last year we sold out, so entry
was restricted to existing ticket holders.
Onsite catering outlets will be open for you
to purchase food and drinks.
To book
Tickets can be booked online at www.
tinnitus.org.uk/expo2019 or can be bought
over the phone by calling 0114 250 9933.
Advance purchase tickets save 40% on the
door price.
Children under 16 go free when
accompanied by an adult.
10 www.tinnitus.org.uk
QUIET 2019 Issue Three

The 2019 Annual Conference will once again bring a jam-packed programme of varied content covering the latest
developments in the field of tinnitus, practical advice for service improvement and specialist sessions to ensure rich
and diverse representation of all areas of tinnitus work across the day.
We will be delivering the popular mix of traditional lectures, smaller breakout session streams, workshops and round
table discussions in a programme you can tailor-make to suit your own learning and development needs.
Below are just some of the highlights — turn over to see the full programme of events! To find out even more, and to
book your tickets, visit www.tinnitus.org.uk/conf2019
Chris Cederroth
Karolinska Institutet, Sweden
Nature versus nurture: genetic
considerations in the development
of tinnitus
While tinnitus has been thought to derive mainly from
environmental factors, we evidenced a significant
contribution of genetics in twins and adoptees. We used
a pharmacological approach in which we searched
for variants in genes coding for drug targets known to
cause tinnitus as a side effect. Our findings strongly
support the notion that genetic factors impact on the
development of tinnitus.
Claire Benton
NIHR Nottingham Biomedical Research
Centre
Practical strategies for supporting
a child with hyperacusis
This session will demonstrate and discuss useful
strategies that can support a child who is struggling
with tolerating sound. Case studies will be used to show
that these are easy to deliver, family-friendly and most
importantly fun. We will discuss how to get consistency
between home and school and cover options for children
with additional needs.
(Presented with Veronica Kennedy)
Eleni Genitsaridi
European School for Interdisciplinary
Tinnitus Research (ESIT)
Tinnitus heterogeneity: methods
for tinnitus subtyping
Tinnitus is a heterogeneous group of conditions that are
related to distinct underlying mechanisms. Although
a lot of research is focusing on understanding this
heterogeneity, to date there is no established framework
for tinnitus subtyping. This talk will summarise factors
hindering tinnitus subtyping, methods used for tinnitus
subtyping, and current knowledge on tinnitus subtypes.
Sandy Grimes
Audiologist and hearing therapist
'But what do you actually say?'
Observe patient consultations —
live!
Have you ever wondered what to say to a patient? Had
trouble managing those difficult conversations we all
face? Or do you just want to look at how someone else
does it? Join Sandy for this live and interactive session
where she will be carrying out tinnitus consultations with
patients.
(Presented with Beth-Anne Culhane)
QUIET 2019 Issue Three www.tinnitus.org.uk 11

Conference Programme - 13 September 2019
We’d love to welcome you to the British Tinnitus Association 2019 Annual Conference here at the prestigious Goldsmiths University. We have a fantastic
programme for you packed with a number of traditional lectures designed for the all delegates and session streams to create your own programme.
There are two opportunities to see talks in both the Latest and Practice session streams but talks in the Specialist stream only occur once. We hope you
enjoy the Conference and make the most of the opportunity to visit our valued exhibitors throughout the day with new products, information and services.
8:30 Arrival - Registration - Exhibitions
9:00 AGM - BTA members only
Ian Gulland Lecture Theatre
9:30 Welcome - Shapiro Prize - BTA Update from David Stockdale
09:45 BTA Research - Current and future partnerships from David Stockdale
5 minute comfort break to move to session streams
Latest
10:15 - 10:40
Update on priority Cochrane Reviews in
tinnitus
Magdalena Sereda
10:45 - 11:10
Tinnitus heterogeneity: methods for
tinnitus subtyping
Eleni Genitsaridi
11:10 Refreshment break + Exhibitors
11:30 - 11:55
CBTi - tinnitus and sleep
Laurence McKenna
5 minute comfort break to move fromw session streams
Practice
10:15 - 10:40
Reducing the wait: tinnitus triage in a busy
University hospital
Sam Nutt
10:45 - 11:10
Tinnitus case studies: sharing experience,
reflecting on practice
Charlotte Rogers
11:30 - 11:55
‘But what do you actually say?’ Observe
patient consultations... live
Sandy Grimes & Beth-Anne Culhane
Ian Gulland Lecture Theatre
Specialist
10:15 - 10:40
Soldiering on: UK veterans’ experiences of
living with tinnitus
Georgina Burns-O’Connell
10:45 - 11:10
BSA Practice Guidance
Derek Hoare
11:30 - 11:55
EMDR for tinnitus - does it work?
Sally Erskine
12:00 Nature versus nurture: genetic considerations in the development of tinnitus from Chris Cederroth
12:30 Lunch + Exhibitors
Latest
13:30 - 13:55
Update on priority Cochrane Reviews in
tinnitus
Magdalena Sereda
(Repeat)
14:00 - 14:25
Tinnitus heterogeneity: methods for
tinnitus subtyping
Eleni Genitsaridi
(Repeat)
14:30 - 14:55
CBTi - tinnitus and Sleep
Laurence McKenna
(Repeat)
Practice
13:30 - 13:55
Reducing the wait: tinnitus triage in a busy
University hospital
Sam Nutt
(Repeat)
14:00 - 14:25
Tinnitus case studies: sharing experience,
reflecting on practice
Charlotte Rogers
(Repeat)
14:30 - 14:55
‘But what do you actually say?’ Observe
patient consultations...live
Sandy Grimes & Beth-Anne Culhane
(Repeat)
15:00 Refreshment break + Exhibitors
Richard Hoggart Building Goldsmiths University
Specialist
13:30 - 13:55
Introducing the BTA Gold Standard for
Tinnitus Support Groups
Colette Bunker
14:00 - 14:25
Practical strategies for supporting a child
with hyperacusis
Veronica Kennedy and Claire Benton
14:30 - 14:55
Why haven’t we cured tinnitus?
Don McFerran
Poster Session
We’ve had a great number of
entries to our poster session, they
will be on display in the Exhibition
area and available to view all day.
Please stop by and view the entries
and then vote for your Top Two. The
winner will be offered the chance
to present their poster at a future
conference. There will also be a
prize draw out of all of the voters to
win a £50 Amazon voucher.
Exhibitors
We are delighted to welcome
a range of exhibitors to our
Conference and would like to thank
them all for their enthusiastic
support. Please take time to visit
them in our Exhibitors Hall.
Albert Waeschle
Amplifon
Association of Lip Speakers (ALS)
Bernafon
British Academy of Audiology (BAA)
British Acoustic Neuroma
Association (BANA)
British Society of Audiology (BSA)
British Society of Hearing Aid
Audiologists (BSHAA)
Cubex Ltd
Guymark UK
Neuromod Devices
Oticon Independent
Oticon NHS
Phonak
Puretone
Samaritans
Sivantos
Starkey Technologies
University of Nottingham
Widex
Representatives from BTA Tinnitus
Support Groups
Get Social
Whether you’re a social media
novice or practically an influencer
we’d love to see the Conference
from your eyes. Check-in, share
your photos or just pass comment
using the hashtag #BTAconf2019
and tag us!
Ian Gulland Lecture Theatre
15:20 Tinnitus distress and thoughts of suicide from Derek Hoare, Carol MacDonald and panelists
16:45 Close
@BritishTinnitus
#BTAconf2019

I read it on the internet
(so it must be true...)
Jenny Thompson gives our top tips for assessing health information online
Thanks to the internet, the latest news about
tinnitus spreads quickly. However, the web is
free to publish on, so you should be careful – if
something sounds too good to be true, chances
are it probably is. It is important to use trustworthy
sources of tinnitus news, such as our own website
www.tinnitus.org.uk
Here are our tips for staying cautious when reading
online tinnitus news and information:
1. Are you reading news or an advert?
Some sites are good at camouflaging adverts
as actual news. If a story endorses a particular
product, or contains purely positive information,
then it’s likely to be trying to sell you something.
2. Do they have an agenda?
A single post or article cannot tell you everything
you need to know about an organisation –
particularly whether there’s an agenda. Their
website may have an ‘About’ page that tells you
more.
3. What type of website is it?
The end of a web address tells you what kind
of organisation it is. Government-run (.gov) and
education (.edu) sites are typically trustworthy –
personal sites may require some scepticism.
4. How is the website funded?
If an outside company is funding a site, it may
affect the information they are putting out — any
sponsorship should be visible on the website.
5. What is the source of information?
If the publisher did not do the research
themselves, the original source should clearly
be indicated. Do they credit textbooks or other
articles and does the original source back up what
the article is saying?
6. What is the basis of the
information?
You should expect scientific evidence to be laid
out. Opinions should also be clearly labelled, and
remember that testimonials, anecdotes and
opinions are not the same as objective evidencebased
information.
7. Is the information reviewed?
You can be more confident in the quality of
medical information on a website if people with
credible professional and scientific qualifications
review the material before it’s posted. Some sites
may put the credentials of reviewers at the bottom
of the post..
8. How current is the information?
Some outdated information can be misleading
and potentially dangerous. Responsible health
websites will aim to keep their information as
up to date as possible. However, other types of
sites such as news sites may never be updated or
corrected.
Don’t forget, your best source of information may
be your doctor. If you are unsure about anything
you’ve read, ask them about it!
QUIET 2019 Issue Three www.tinnitus.org.uk 13

Tinnitus and the
anticipation hypothesis
In the first of a two-part series, Dr James Jackson, Senior Lecturer in Psychology at
Leeds Trinity University discusses his research.
How distressing is your tinnitus right now?
To answer that, we need to compare how
we feel right now with how we felt recently,
and to imagine how we will feel later today,
or even next week. Are you having a ‘good’
day or a ‘bad’ day? This is what we refer to
as a subjective measure of tinnitus. It is
your judgement, based upon your
perception, feelings and experience. For
healthcare professionals seeking to
diagnose tinnitus severity, the best way
(currently) is to get you to complete a
questionnaire, and for you to indicate your
agreement with certain items by circling
numbers. Questions such as: “Over the past
week, how much has your tinnitus interfered
with your ability to relax?” We add this up
and we get a score as to how you are doing.
Great, right?
Well, not really. By definition, self-report
measures are subject to response bias.
Some people prefer to circle scores at the
ends of a given scale and others avoid this
at all costs. Is your ‘2’ out of five a ‘1’ for
someone else, even if you share sensations
and experiences? Furthermore, there are
well-known links between tinnitus and
depression. Since they are often found
together, would a high score indicate severe
tinnitus, less severe tinnitus alongside
clinical depression, or some other
confusing combination? What, then, is this
questionnaire measuring — tinnitus or
depression? And even if the questionnaire
is accurate, can we compare your score
with those of different patients?
While such a measure is helpful, we need to
be aware it is not always accurate, even on
a day-to-day basis. What we need is an
objective measure of tinnitus, a way of
measuring tinnitus in the same way your GP
considers cholesterol – i.e. a blood test with
a score of five or below being ‘healthy’, and
a score above five suggesting that more
needs to be done. It is a system all doctors
understand, it avoids response bias, and it
enables you to come back in three months
and compare your new score with your old
one. Currently, no reliable objective
measure of tinnitus distress exists, though
there are other researchers seeking one.
Recently, the BTA funded my feasibility
study looking into the relationship between
tinnitus distress and concentration of the
stress hormone, cortisol. Cortisol is part of
the ‘fight or flight’ response and influences
glucose levels in the blood. More
specifically, I considered the phenomenon
known as the Cortisol Awakening Response
14 www.tinnitus.org.uk
QUIET 2019 Issue Three

Cortisol
Levels
Challenges
ahead
Typical day
Stressors ahead
Awakening +15mins +30mins +45mins
Figure 1: Cortisol
Awakening Responses
Time
or ‘CAR’. Here, cortisol levels increase
rapidly in the run-up to awakening, and for
up to an hour afterwards, before dropping
off during the day. The CAR is a
fundamental part of ‘waking up’, providing
the sugar (and energy) we need to move
from being asleep and into wakefulness.
Figure 1 shows the typical Cortisol
Awakening Response (in black), as
measured every fifteen minutes at the
start of the day. Cortisol levels rise, then
peak, then fall away. However, it is also
well-known that the CAR is affected by our
anticipation of the day ahead — the
‘Anticipation Hypothesis’ of Powell and
Schlotz (2012).
Think of what happens when we wake up.
You return to consciousness, you remember
who you are, where you are, and then what
you are doing today. All due to the sugars
rushing into the memory areas of the brain.
Do you have to go to work? Are you late for
work? What do you need to do at work? etc.
As these thoughts rush in, our brain
considers what is required, and then
releases the resources we will need. For
example, in a fascinating study, 44 German
ballroom dancers were found to secrete
more cortisol on competition days than on
training days, and this occurred on
awakening. In effect their bodies
anticipated their needs and provided more
cortisol, releasing more energy for the
challenges ahead. Such a response is also
shown in Figure 1 (blue line). Finally, we see
a flatter response in individuals who have
faced a chronic condition for some time
(red line). Here, the pressures and stresses
of daily life have become too much, too
little cortisol is released less energy
lethargy and fatigue. We would refer to
such an individual as being ‘burnt out’. In
other words, it becomes possible to
separate out those are well, those who are
rising to daily challenges, and those who
have succumbed to long-term challenges.
So what does tinnitus have to do with this?
As a researcher, my interest lies in
measuring tinnitus before and after
interventions, to see if these interventions
have worked, to highlight treatments that
are more effective and to discount those
which are less so. In the next part, I’ll
explain how the CAR can be used to identify
those with the most severe tinnitus, and
what these findings mean.
QUIET 2019 Issue Three www.tinnitus.org.uk 15

The decision aid for
tinnitus one year on
Dr Helen Pryce, Audiology Department, Aston University assesses whether the decision
aid for tinnitus is helping patients.
Two people have tinnitus. It sounds like a high
pitched whistle to both of them. They are both
disturbed at night and find it difficult when they
come home after a long day to a quiet house. These
two people seek help from their GPs and are
referred to their local audiology clinics. Their
audiologist assesses the loudness and sound of
their tinnitus and checks them out for other
hearing problems. All else is well and now it’s time
to decide what to do next.
One of our two people is a busy mother of four. She
works and is dependent on childcare as her partner
is frequently away working. The other is a young
man who lives alone. He works a busy job and
enjoys socialising in the evening.
Our audiologist has read all the correct guidelines
and prescribes them both a course of Cognitive
Behavioural Therapy (CBT) to improve their coping
with the tinnitus. The young man is delighted by the
suggestion of a CBT group. He attends every
session and finds it very helpful. The busy mother 16
attends reluctantly, having made copious
arrangements. She is often late arriving and has to
shoot off swiftly at the end to get back to her
family. Eventually she stops attending and
concludes that there is nothing that can help her.
This is the risk when audiologists prescribe care
without involving their patients fully in deciding
what will be best for them. What is best depends on
more than average efficacy of treatment. It
depends on what fits someone’s values,
preferences and life. The truth is that there is
always more than one thing that can be done,
including doing nothing.
To help with this, we developed a decision aid for
tinnitus.
Decision aids help clinicians and patients to work
together to decide what will suit someone best.
They comprise summaries of evidence-based
treatment options with pros and cons described
through the frequently asked questions that people
have. They can prompt a discussion about the
potential for treatments, alongside a targeted
discussion on the way these services are accessed
locally. Through these conversations, clinicians and
patients can be clear about the relative burdens
and advantages of each treatment, or, indeed, of
doing nothing.
To learn more about how it was developed see:
www.tandfonline.com/doi/full/10.1080/149920
27.2018.1468093
16
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QUIET 2019 Issue Three

But does it work?
We wanted to see whether the introduction of the
tinnitus decision aid would improve decisionmaking
in tinnitus care. We recruited a number of
clinical sites across England and Wales to
introduce the decision aid and record changes in
the level of decisional satisfaction that their
patients experienced.
The clinical sites that agreed to be involved in
individual evaluations of their service both with and
without using the decision aid as part of their
shared decision-making process. We did not ask
the sites to alter their usual care in any way other
than to use the decision aid with their patients.
The sites involved represented rural, urban and
suburban communities in both affluent and less
affluent communities in England and Wales. Each
site introduced the decisional conflict scale. This is
a well-validated measure of the components of the
decisions we make, including how informed we
feel, how the decision matches our values, how
supported we are in our decision, how effective we
see the decision as being and how confident we are
in our decision.
Pictured: The tinnitus care decision aid
Four sites have completed a service evaluation.
They completed the decisional conflict scales with
between 10-30 consecutive patients as a baseline
and then introduced the decision aid and repeated
with a further consecutive 10-30 patients. We
analysed their results and looked at the
comparison between no decisional conflict
(however low the score) and any decisional conflict.
Here are the results:
Pre-post comparison
Decision
aid
No
decision
aid
No
decisional
conflict
Decisional
conflict
Total
number of
patients
30 53 83
19 72 91
The risks of tinnitus patients experiencing
decisional conflict were calculated. Patients using
the decision aid showed a lower risk of
experiencing decisional conflict.
This decrease in risk means that for around every
seven people who are given the decision aid as part
of their decision-making, one additional person will
have no decisional conflict as a result. Given that
this is a low-cost intervention (it's a piece of paper)
this suggests that there is huge potential to
improve tinnitus services through introducing the
decision aid for tinnitus across further
services. In addition, there are further
reductions in decisional conflict across
the various component parts of the aid.
In conclusion, our decision aid appears to
impact the decisional conflict experienced
by patients. These service evaluations are
a great starting point for examining the
potential of the decision aid to improve
communication between audiologists and
patients. It is important to acknowledge
that these are results of service
evaluation not research. Patients were
seen as usual in their clinics and not
randomised or blinded to receiving the
decision aid or not. Nonetheless, early
adopter services such as these are likely
to be those with more motivation to
improving shared decision-making and so we
might have expected a smaller effect of
introducing the decision aid in addition.
We continue to work with further services in
assessing the impact of the introduction of the
decision aid. Why not check whether your local
service has introduced the decision aid and has
measured the impact of this?
QUIET 2019 Issue Three www.tinnitus.org.uk 17

CBT for tinnitus-
related insomnia
Dr Liz Marks updates us on the BTA-supported trial looking at helping people whose sleep
is disturbed by their tinnitus.
We have now completed recruitment and
treatment. A total of 102 people were
recruited and of these 97 have completed
treatment (by 9 July). There are still a
number of follow-up sessions planned,
between August and December 2019, which
will allow us to collect longer-term followup
data. We anticipate that all final followup
data will have been collected by the end
of this year.
Over the coming six to nine months we will
be managing data and analysing data, with
support from a statistician. We will also be
completing the write-up of the quantitative
data, with the aim to have this ready to
submit for publication in a peer-review
journal by March 2020. In 2020 we will
also be working hard on other aspects of
dissemination, including presentations at 18
national and international conferences.
We have submitted our trial protocol for
publication, and it is currently under peer
review.
Unfortunately we experienced significant
technical difficulties with the actigraphs
loaned to us. Over the last year, six of the
seven actigraphs have failed, meaning
much of the data is not recoverable. We
will still have some objective data to
assess sleep, but the reliability of this will
be severely limited by the small number
of actigraphy-based sleep outcomes now
available to us.
We have added a qualitative element to the
study, and have received ethical approval to
interview participants who received either
Cognitive Behavioural Therapy for insomnia
or audiologically based care in the trial.
Participants who consent will be offered an
interview with one of the researchers after
their final follow-up session. Interviews
will explore their experiences and attitudes
towards the different treatments with the
aim of improving our understanding of how
and why treatments might work, and what
aspects could be enhanced to improve
acceptability and efficacy.
18
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QUIET 2019 Issue Three

40 years of
support
Nic Wray looks at the history of the BTA
The birth of the British Tinnitus Association
(BTA) was one very much driven by people
with tinnitus. A 1978 documentary on
tinnitus, produced by the campaigning
deaf MP, Jack Ashley, had flooded the
RNID (Royal National Institute for the
Deaf, now Action on Hearing Loss) with
calls. The RNID called a meeting and on a
sunny July day in 1979, over 300 people
crowded into the Grand Committee Room
at the House of Commons. Jack Ashley
promised to campaign both inside and
outside Parliament, to improve the lot of
people with tinnitus. It was asked whether
more self-help groups could be formed and
an association set up – the British Tinnitus
Association. The RNID Council considered
the matter and the BTA was born.
Soon there were over 40 groups all over the
country. Initially, the BTA was provided with
an administrator and office by the RNID,
and a tinnitus newsletter was included in
their journal.
From 1982 onwards, the BTA held two
meetings annually, and in 1990 a Working
Group was formed to look into the
feasibility of setting up the BTA as an
independent charity.
1991 saw the start of the new BTA, which
became a registered charity in 1992, with
volunteers associated with the Sheffield
Tinnitus Association taking on the
administration and organisational tasks.
In 1994, the first Counselling Training
Seminars (now renamed Tinnitus Adviser
Training courses) were held, and these
have been joined by other professional
development courses and events. Tinnitus
Information Days were launched in 2012.
Tinnitus Awareness Week (now Tinnitus
Week) ran for the first time in 1990, and has
now become an international event.
From a base of two part-time volunteers
and a rather run-down office, the BTA
now has 18 staff members working from
modern facilities in Sheffield and continues
to go from strength to strength. We wonder
what the next 40 years will bring!
In 1979 ...
• The average house price was £19,925.
A pint of milk costs 15 pence.
• January saw the start of widespread
strikes and 'The Winter of Discontent'
• Sid Vicious died
• Trevor Francis signed for Nottingham
Forest in football's first £1m deal
• Margaret Thatcher became the first
female British Prime Minister
• The first JD Wetherspoons pub opened
• The Hitchhiker's Guide to the Galaxy
was published
• The BTA Chief Executive was born!
QUIET 2019 Issue Three www.tinnitus.org.uk 19

We've taken a look through our archives from the last forty years — here are some of the people
and activities that have contributed to where we are today. Huge thanks must go to everyone,
whether caught on camera or not, and of course not least you, as a member!
20 www.tinnitus.org.uk
QUIET 2019 Issue Three

Here's to the next 40 years!
QUIET 2019 Issue Three www.tinnitus.org.uk 21

Tinnitus
Research Appeal
Together we can create a tinnitus-free world
40 years of the BTA – celebrating
our past and looking to the future
We want to:
• Continue our work with researchers across the
world to map out current tinnitus research
• Create a Tinnitus Biobank for a long-term
study into genetic and environmental factors
associated with tinnitus
• Develop further research using Biobank data to
analyse connections between these factors
How can I support tinnitus
research?
As we receive no direct Government funding, all
our work is paid for by donations and grants from
members and supporters. Every contribution
makes a difference – you can make a donation via
our website, or over the phone. Or further ahead,
leaving a gift in your Will could really help – over
half our funds for research come from gifts in
Wills.
Our vision is a world where no one suffers from
tinnitus. As we mentioned earlier in Quiet, current
treatment options, whilst helping a lot of people to
improve their quality of life and reduce the impact
of tinnitus, aren't the solution for everyone. “We
need a cure” is something we hear often. People
with tinnitus want their tinnitus loudness reduced,
and many would prefer a pill over other options.
What does the future hold?
22
We don’t know when a cure, or cures, for tinnitus
will come. We do know that momentum is building,
and that there is every reason to believe that cures
for tinnitus are possible.
Join us and support our
Tinnitus Research Appeal
• Go to our website to donate safely and securely
at www.tinnitus.org.uk/tinnitus-research
• Or call 0114 250 9933 to donate over the phone.
Thank you.
Together we can silence
tinnitus.
Together we can cure
tinnitus.
22 www.tinnitus.org.uk
QUIET 2019 Issue Three Two

10 facts about ...
our helpline
We have over 100 years of
experience of taking calls
between staff and volunteers
We receive an
average of 556
calls per month
Our helpline
service includes
email and web
chat.
Over 86% of callers
end the call feeling
satisfied or very
satisfied with the help
we have provided.
We have had our
Freephone number
for 20 years.
Seven out of ten
of people we speak
to are distressed,
stressed or anxious.
Around a quarter of callers
have spoken to us before
More than 95% of the calls we
receive are from people who have
tinnitus or a loved one of someone
who has tinnitus
All our staff take helpline
calls, whatever their role.
The helpline is open
Monday to Friday
9.00am to 5.00pm
0800 018 0527
QUIET 2019 Issue Three www.tinnitus.org.uk 23

16 th Annual
Conference
14-15 November 2019
ACC Liverpool
Register
NOW
Join the British Academy of Audiology for our 16th Annual Conference on the 14th and 15th November
2019 at the ACC in Liverpool.
By attending the two-day conference you can expect to receive the latest in Audiology research,
education and expertise, with inspiring speakers and informative sessions.
CONFERENCE HIGHLIGHTS
• The Adrian Davis lecture to be presented by John Day, Clinical Director of Audiology, Betsi Cadwaladr
University Health Board
• The Bamford lecture to be presented by Professor De Wet Swanepoel, President of the International
Society of Audiology
• Other Keynote speakers include Professor Larry Humes, Indiana University Bloomington and Dr Sally
Rosengren, University of Sydney
• Parallel sessions looking at all aspects of Audiology across all sectors from research to clinical practice,
encompassing commercial aspects
• Thursday to include a walk-through dementia friendly clinic room
• Friday morning to include an IDA Paediatric Workshop - ticket only!
• Friday afternoon to include a Clinical Research Workshop
• Awards programme to acknowledge individuals and teams who have excelled in the Audiology profession
• The UK’s largest Audiology exhibition
• Exciting social event and networking opportunities
• NEW FOR 2019: Pop-up workshops in the Exhibition hall
• And much more!
If you are a healthcare professional with an interest
in any aspect of Audiology then you will benefit from
attending this conference.
baaudiology.org
British Academy of Audiology
@BAAudiology
For more information visit www.baaudiology.org/conference
24 www.tinnitus.org.uk
QUIET 2019 Issue Three

The sound
of music
Scott Moore explores the phenomenon of musical hallucination
"Musical tinnitus? Pity they don’t do
requests!" quips Bill Oddie. The comedian,
wildlife conservationist and all-round
national treasure has an unusual form of
tinnitus called musical hallucination (MH).
Around one in eight people live with
persistent tinnitus. There’s a common
misconception that tinnitus can only be
experienced as a buzzing or ringing sound.
However, David Baguley, BTA President
and Professor of Hearing Sciences at the
University of Nottingham, estimates that
one in 100 people experience musical
tinnitus. In cases of musical tinnitus, people
hear music instead of a ringing or buzzing.
Bill Oddie, for example, hears the bagpipes,
a brass band and a male voice choir.
Even though 1 in 100 people experience MH,
it is a condition that is rarely discussed
People who live with MH are reluctant
to talk about their condition because of
its apparent similarity to mental health
conditions such as schizophrenia. Although
people with schizophrenia commonly hear
voices, they very rarely experience MH.
There is no established link between MH
and mental health conditions.
In most cases of MH, there is no underlying
cause, but in a small minority of people,
there could be a physical reason behind the
MH. Therefore, it’s important to see your GP
Bill Oddie
if you are experiencing MH.
(photo: Bryan Ledgard)
The most common cause of MH is hearing
loss. Your doctor is therefore likely to refer
you to an audiologist to take hearing tests.
Based on the results of these tests, you
may be prescribed a hearing aid. Many
people also find that their MH becomes
less intrusive once the condition has
been explained to them and they have
been reassured that there is no serious
underlying cause.
Experiencing MH isn’t anything to hide or
be ashamed of. Do contact us on 0800 018
0527 if you would like more information
or visit www.tinnitus.org.uk/musicalhallucination.
QUIET 2019 Issue Three www.tinnitus.org.uk 25

Enjoy your festival
without ruining your hearing
With loads of music festivals taking place up and
down the country over the summer, it’s a really
good time to think about how best to protect
yourself from tinnitus.
Take & wear earplugs
There’s a lot more space at a festival, which
means you get time away from listening to the
bands and can give your ears a rest. BUT you
must remember to put your earplugs back in
when you are back listening.
Stand back
It really is so dangerous to be right next to the
source of sound. So often we hear from people
saying they stood at the front to get a better
view and that was the start of tinnitus for
them. So please, don't stand by the speakers.
Take regular breaks
It’s really important that you give your ears a
rest. A festival is great for this because there
is always so much else to do. Go to a chill-out
area, look at the stalls and have a walk and a
rest. Or if you’re camping, head back to your
tent for a bit and just have a rest.
What about the kids?
If you’re taking kids, please, please, please
make sure they wear the right hearing
protection for their age. You want their
experience to be great, too, and getting them
to learn about safe listening early in life is a
really important thing to do.
Don't lose your hearing
protection
In a field, if you drop a plug, you really wouldn’t
want to put it back in without making sure it’s
super clean. We don’t want any ear infections
being caused! So if you drop them, make sure
you wash them. Even better, take a spare pair.
And keep a little sealable bag, like a freezer
bag, handy to put them in when you aren’t
wearing them.
Drink lots of water
You may have a few drinks but don't forget
about the water. Drinking water is key to
keeping your inner ear healthy, so make sure
you take a bottle with you (eco-friendly too!),
and keep refilling at the water stations.
Have a great time!
We want you to love music for a lifetime, and we hope our simple tips and advice can make sure you,
your family and your friends continue to do so!
26
If you would like to find out more about our Plug’em campaign, go to www.plugem.co.uk

Tea Tally ... Tea
Types ... Tea Party!
What on earth are we talking about? BTA Fundraiser David Steele explains all
We've been asking people to hold tea
parties during Tea for Tinnitus for a number
of years, and whilst these have been
successful, we wanted to allow supporters
with a bit less time to get involved. New
for 2019 we are launching our Tea Tally
fundraiser — an activity where you can
fundraise for the BTA at work or at home.
Support our work in the world of tinnitus by
making a donation for each cup you drink.
Encourage your friends and colleagues to
join in. Each time your have a cuppa (and
that includes coffee!) mark the tally chart
and at the end of the week calculate your
donation total.
To make life easier for the person making
your tea we've created six tea types! Many
people with tinnitus refer to it as their T —
a sort of nickname for their tinnitus. We
wanted to give people the
opportunity to share their
tea preference and raise
awareness of their tinnitus.
Hence the double meaning
of the hashtag we are using,
#MyT.
So, simply fill in your name,
choose your tea type (mine's
Beige Before Beauty!) and
set your donation per cup.
But remember, you can
still hold a Tea Party — just
let us know which activity
works for you.
If you'd like to take part in a
Tea Party, Tea Tally or share your Tea Types,
please visit: www.tinnitus.org.uk/myt
Alternatively call 0114 250 9933 or email
fundraising@tinnitus.org.uk and speak to
the fundraising team about your plans and
to request a pack.
QUIET 2019 Issue Three www.tinnitus.org.uk 27

Safe Around Sound
Emily Broomhead introduces our new campaign
Raising awareness of safe social listening
goes far wider than just at live music
events, and this is something we want to
look into more over the coming months.
We’re currently planning a
#SafeAroundSound campaign because we
want to make more people aware of safe
social listening and the issues that can
occur in places where you might not expect
to encounter unsafe levels of sound.
We want people with and without tinnitus to
be able to go out, whilst feeling safe around
sound.
Why we’re doing this
We regularly hear from people on
our helpline and at events who have
experienced overly loud sounds at places
such as weddings, the gym, children’s
parties, school discos, etc. These aren’t the
typical sorts of venues and events where
you would expect to be exposed to unsafe
sound levels and be at risk of getting
tinnitus as a result.
You can help us find the sorts of events that
are too loud when they don’t need to be. The
places where it wouldn’t cause a problem to
have the sound levels lowered. For example,
if you go to the cinema and it’s regularly
100dB and over, or you go to a gym class
and it’s over 95dB, let us know.
Help us find the places that are most
commonly too loud, so we can look into
raising more awareness of how sound
levels can affect people, the issues this can
cause and the simple changes that can be
made which will make a big difference.
Speak up to get the volume
turned down
We also want to help you feel empowered
to say something if it’s too loud. If we can
help more people understand what is safe
and for how long, maybe we can help make
some really positive changes.
We don’t want to stop people enjoying
these events, we just want to make sure
you’re safe.
Can you help us?
We want to find out more about
how frequently people experience
uncomfortable and unsafe levels of sound,
and where this happens. And to do this we
need your help.
28 www.tinnitus.org.uk
QUIET 2019 Issue Three

How you can help
If you’re going to be going to any of the
following places in the next few weeks,
and you’d like to help us find out a bit more
about how loud they can be, please get in
touch.
Examples are:
• The theatre
• A festival
• The cinema
• A sporting event
• A children’s party
• A kids' disco
• A wedding
• The gym
But before you do anything, get in touch.
We’ll tell you all you need to know once you
have contacted us, even if you just want
to find out a bit more about what we are
planning. Please contact me via email first
to emily@tinnitus.org.uk or call me on 0114
250 9933. You can also visit www.tinnitus.
org.uk/safe-around-sound.
Simple steps to
get involved
Getting involved is easy, this is
how:
1. You will need a mobile phone
or a device which is capable of
measuring sound levels via an
app.
2. We just need a little of your
time. We don’t need you to go to
the cinema especially for us, we
don’t need to you to get a gym
membership or go to classes you
wouldn’t normally go it, we just
want you to record the sound level
for a moment or two when you are
out somewhere loud
3. Let us know how loud the
sound was– if you record some
sound levels, just email us a
screen grab of the decibel level
you captured, and tell us where
you were and when it was.
We really look forward to hearing from you and working
together to help everyone be Safe Around Sound.
QUIET 2019 Issue Three www.tinnitus.org.uk 29

Truly life-changing
Liz tells us her tinnitus story and how technology has helped her
I was
diagnosed
with left-sided
Ménière's
disease thirty
years ago. One
of the earliest
symptoms was
a low-pitched
tinnitus.
Ten years ago my Ménière's became
bi-lateral with tinnitus both sides. The
usual low-pitched hum was joined by
other prolonged spells of high-pitched
excruciatingly loud noise which started in
my sleep. I would wake in the early hours
terrified by the loud clanging of metal
gates, factory machinery, air brakes, train
engines, and similar.
I also developed hyperacusis (noise
sensitivity) which others find difficult
to understand — how can a person with
hearing loss hear noises that cause them
such acute physical pain and distress?
I dread hearing tests because the higherpitched
sounds really 'hurt'.
My hearing deteriorated and I was given
hearing aids and a masking device. My
hearing then deteriorated further and I
was given hearing aids that incorporated a
programme of soothing sounds to help me.
Earlier this year I realised I could barely
hear with or without hearing aids. A hearing
test confirmed further deterioration
in both ears and my hearing aids were
reprogrammed.
For many years I have missed listening to
the radio or my collection of operatic and
classical music. Unlike TV there are no
subtitles and no pause or rewind facility to
replay an item ten times until I can fathom
out what was said! Regular ear phones
are not an option for me — it would be
impossible to avoid sudden loud or high
pitched sounds.
Hearing loss is a lonely road
and tinnitus is impossible
for non-sufferers to
comprehend.
It was by chance that I tried AfterShokz
bone conduction headphones. My daughter
had recently bought a pair to use for
business calls.
How to describe my joy at hearing speech
and music clearly? I don't even remember
a time when I could hear that well. It was a
remarkable and uplifting experience and I
am astonished and delighted every time I
use them, truly life-changing.
Interested
in trying
AfterShokz?
Please visit our safe and secure online
shop for our range of AfterShokz
headphones. As we are a charity, buying
from us means that any surplus funds
help support the work that we do for
people living with tinnitus.
www.tinnitus.org.uk/shop
30 www.tinnitus.org.uk
QUIET 2019 Issue Three

REAL
LIVES
Readers share their experiences of living with tinnitus
Stages in my
journey: Steve's
story — part five
Quiet reader Steve has written a book
about his experience with tinnitus which
he has kindly allowed us to share. Steve's
final article sums up his tinnitus journey.
In this, my final article, I will try to break
down the stages which I believe I went
through to reach the point I’d finally let go
of that bad friend, tinnitus. Obviously they
aren’t actually stages in a straight line like
a graph, more like a succession of hills
which go up and down but gradually got me
home. There were setbacks, but by sticking
to the plan, I got there in the end.
Stage 1
Symptoms: PANIC!! Obsession of the
tinnitus causing a vicious cycle of anxiety
causing louder tinnitus. Depression.
Fight or flight mode causing heightened
sensitivity to the tinnitus. Tendency to listen
for the tinnitus when I hadn’t noticed it for
a short period. Difficulty in getting off to
sleep.
There was hope, though: sometimes
seconds went by without noticing the
tinnitus. I hung on to that thought!
Steve Haynes
What I did: Got immediate help from others.
Talked to others with tinnitus. Saw a GP and
followed the medical track to eliminate any
morbid fears. Learned about the condition.
Understood that it’s the emotional response
which was the hardest thing to deal with
at the time. Remember one in eight people
have tinnitus, it’s a common condition, we
are not on our own. I sought help from a
tinnitus forum.
At this stage my GP prescribed anti-anxiety
medication. I took a few to start with, but
the stubborn part of me didn’t want to have
to rely on drugs.
Although I didn’t use an official tinnitus
masker device, I did find that babbling
brook sound effects, played through small
QUIET 2019 Issue Three www.tinnitus.org.uk 31

earpieces on my smart phone, helped
distract me from the tinnitus, especially
when trying to get off to sleep. I was
advised that the sound effect (masking)
volume should be set just below the tinnitus
volume.
I practised blocking my negative emotions
and distracted myself with things I enjoyed
doing. I kept busy. My advice is not to
expect too much too soon.
I started to think about ways I could reduce
my stress levels and planned life changes
accordingly.
Stage 2
Observations: Short ‘quiet’ spells. Minutes
go by without noticing the tinnitus.
What I did: I had started to build confidence
in the fact that I’d had periods where I
hadn’t noticed the tinnitus. My brain was
beginning to learn it wasn’t a threat. These
‘quiet’ spells were getting longer and longer
provided I continued to practise focusing
on other things. My advice, again: don’t be
tempted to listen for the ‘bad friend’, keep
the door closed.
I tried not to let my emotions
latch onto the tinnitus; it seemed
all about lowering my anxiety
levels.
When I heard new tinnitus sounds, or
changes in its nature, I learned to ignore
them. I found tinnitus played tricks on me.
Any new sounds, or changes, were treated
exactly the same way.
Stage 3
Observations: Longer ‘quiet’ spells. Hours
went by without noticing the tinnitus. I was
now really believing in the brain's ability to
Steve and his wife Chris
adapt and rewire itself. I could now enjoy
many activities without the tinnitus getting
in the way.
What I did: I carried on building in the
confidence that I was getting longer and
longer periods without noticing the tinnitus.
Anxiety levels were now much reduced
which also helped lower the perceived
volume of the tinnitus when I did notice it.
I started to gradually wean myself off the
tinnitus masker sounds and practised
thinking nice things when trying to get off
to sleep. I didn’t want to have to rely on any
‘props’ to deal with this and the props were
just acting as a reminder I had tinnitus.
Stage 4
Observations: Now I was really getting back
to a normal life. Tinnitus was no longer
taking up much of my attention. Days
sometimes went past without thinking
about, or noticing my tinnitus. When I did
notice it, I had every faith that as soon as
I focused back on other things, it would
32 www.tinnitus.org.uk
QUIET 2019 Issue Three

disappear from my consciousness as usual.
What I did: I started learning to chill out
more without having to distract myself from
the tinnitus or keep busy.
Stage 5
Observations: Back to normal life, well even
better. I have made some constructive life
changes. I have removed many stressors
from my life. Tinnitus is very rarely noticed
now. I can relax without the fear of tinnitus
rearing its ugly head. If someone mentions
it, I’m happy to listen to the tinnitus in the
knowledge that I know my brain will soon
stop noticing it again. I find that it can take
several seconds to hear the tinnitus now
because my brain has rewired itself and
become so good at filtering it out.
What I do: I try to enjoy life; after all, we
weren’t put here to be miserable, were we?
I try to stay positive and try to eliminate
anything which is trying to drag me down.
A good friend of mine, a few years ago, told
me, “Don’t let the bastards get you down”.
Wise words indeed.
Every day I wake up and am grateful to
have another day in this world. Life is
special, so I try to make the most of it.
If anyone asks me about
tinnitus, I say “Tinnitus? I
forgot I had that”.
Final Note
I hope you found something in this series
which helped you. You can read the series
in my free eBook at https://sites.google.
com/site/tinnitusnopanic/ as I wish to
help as many people as possible who are
going through the panic stages of tinnitus
like I did.
Niamh's story
One morning in September 2015, my life
changed when I woke up with a loud ringing
sound in my ear. I was told by my doctor
that I had tinnitus, which should go after a
few weeks.
As the weeks went by, along with the
tinnitus I also discovered that I was deaf
in the same ear. I visited consultants, had
hearing tests and MRI scans but received
no answers. While ultimately it was a relief
that this wasn't something serious, I still
felt slightly frustrated being told that both
the loss of hearing and 24/7 ringing sound
were most likely permanent. It was difficult
to process.
For the first time in my
life I struggled mentally.
I think it was because I had always dealt
with problems by finding a solution and
seeing light at the end of the tunnel — but
this made me feel like I was looking into a
long tunnel and I honestly couldn't see the
light.
After one of my meetings with the charity
DeafHear in Limerick, it was suggested
that I explore mindfulness to see if it would
help me manage both the tinnitus and
deafness better. I had only heard about
'being mindful' but I had never tried it. I was
normally too busy running here and there
between everything that life throws at
you. I really hadn't the time to think about
adding something else to my schedule,
but with support and encouragement from
DeafHear and knowing that there was
no other alternative for me, I decided to
explore it further.
I enrolled on an eight-week course, a
mindfulness-based stress-reduction
QUIET 2019 Issue Three www.tinnitus.org.uk 33

programme (MBSR). This was developed
40 years ago by Professor Jon Kabat-
Zinn of the University of Massachusetts
Medical School, and focuses on applying
mindfulness to the whole range of
challenges that can arise from life's
stresses and physical and psychological
conditions.
The impact of MBSR on me has been lifechanging.
When we started the course, I
initially struggled. I blamed the tinnitus
at first but then I realised that I didn't like
sitting doing nothing — my mind was too
busy to just sit there. But all minds wander
— that's just what they do. So my teacher
asked me to welcome my tinnitus and
accept that it was there.
That was the turning point. As soon as
I started to do that, a shift happened. It
took practice but I got there. I practised
meditation and that's when it began to feel
a little quieter.
Niamh McMahon
The funny thing is that almost four years
on, while the tinnitus has never stopped
it has become part of my everyday life —
living with the tinnitus has become part of
me and part of who I am.
A longer version of this article appeared in S Magazine, used
with permission
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FEEDBACK
Dismissive GPs
I have just been reading a back issue of
Quiet in the hospital while waiting for my
Bone Anchored Hearing Aid check.
Reading the 'real lives' stories I can’t
believe that GPs dismiss tinnitus so
carelessly.
My tinnitus finally turned out to be a
Meningioma, only diagnosed when the
audiologists did tests and then sent me
for an MRI scan.
GPs must take tinnitus more seriously.
I feel so sorry for these people in your
stories.
Lesley Stuckey
Full steam ahead!
In the same post as my Quiet was
another quarterly magazine to which
my wife subscribes. It came in a 'plastic'
wrapper made out of biodegradable
potato starch, even if it ends up in
landfill!
Is this something the BTA could
consider, to help with Sir David
Attenborough's appeals about the
plastic in the oceans an landfill?
Conrad Woolley
Hearing songs
In November 2017 I started to hear
singing of an old song repeatedly in
my head. Since that time, I have found
no respite from hearing songs in my
head, ranging from music from when I
was very little to popular and classical
music, musical theatre and Christmas
carols. There's no particular order and
I hear them at any time during the day
or night when things are quiet, such as
when I am trying to read or get to sleep.
At other times, I hear them over the
sound of the car engine. When the radio
or TV is turned off, they continue in a
similar fashion in my head.
You can imagine this causes me
extreme distress, especially when
trying to get to sleep at night. To help I
have a CD player with various sounds,
but sometimes the music in my head
is louder than the music I am trying to
listen to and then this totally disrupts
my sleep.
I have had CBT at my doctor's
suggestion last year but to no avail.
I personally have not come across
anyone who has even heard of musical
hallucinations and I would be pleased
to hear from anyone regarding ways of
coping.
Carole Garner
Send your comments, feedback and questions to me at nic@tinnitus.org.uk or send
your letter to Nic Wray, FREEPOST BTA (no stamp needed)
QUIET 2019 Issue Three www.tinnitus.org.uk 35

How we are improving
your BTA membership
Our members are at the heart of our work.
You play a huge part in everything we do –
together we are determined to make sure that no
one faces tinnitus alone.
We are making some changes to our membership
scheme which means as well as supporting our
work, you'll receive some great membership
benefits.
You can now choose the type of
membership that suits you.
We want to give you more control over how we
communicate with you. This also means it could
save the organisation time and money, whilst
being environmentally friendly. Simply select your
preferred membership option on the Direct Debit
sign-up form you will receive with your renewal
notice. The new choices are:
Digital membership
Want to receive all your communications via
email? Digital membership means you’ll receive
Quiet magazine as an exclusive download
via email. You’ll also receive your monthly
e-newsletter, Focus, and your renewal notices by
email.
Mindful membership
We know some of our members want to support
the BTA but don't want to be reminded of their
tinnitus through our publications. By choosing
mindful membership you can support our work
without us contacting you.
Standard membership
You’ll receive all the membership benefits listed
above in the standard way. So that means Quiet
magazine and renewal notices will arrive in the
post (or email) and the Focus e-newsletter by
email.
Thank you
Membership means you are part of a mutually
supportive community, as well as being the first
to hear about the latest tinnitus research.
There's no right or wrong way to be a member of
the BTA. We want to ensure we communicate with
you in a way that suits you.
Look out for your renewal notice for full details
about our new membership.
Thank you for your continued support.
36 www.tinnitus.org.uk
QUIET 2019 Issue Three

What is the
Virtual Step Challenge?
Get sponsored for every step you take and
walk towards a healthier you and a better
future for people living with tinnitus.
Dream up your ideal route -
and walk it ... virtually!
1
Simply
select your virtual route
with start and finish points that
mean something to you. For
example, Peterborough to Paris
or Manchester to Munich.
You can set your own target or ask for £1
per mile.
So, for example:
Sheffield to London
158 miles (333,696 steps) = £158 target
Munich to Vienna
249 miles (525,888 steps) = £249 target
Paris to Toulouse
409 miles (863,808 steps) = £409 target
2
3
4
5
Select an app for your phone,
use a wrist pedometer or
activity tracker to count your
steps.
Set your start and finish dates
to create your daily walking
target.
Ask friends, family and
colleagues to sponsor your
challenge.
Get walking!
Lands' End to John O'Groats
811 miles (1,712,832 steps) = £811 target
For more information and to sign up for
your own challenge please visit
www.tinnitus.org.uk/step-challenge
Our team have been working on their very
own challenge — to walk to our friends
the American Tinnitus Association in
Washington — and back! They've been
taking pictures on their walks — perhaps
these pictures below might inspire you!
L-R Colette in Georgia; Marcus in the Peak District;
David and Emily on a wet lunchtime walk!
QUIET 2019 Issue Three www.tinnitus.org.uk
37

Groups update
After another successful trip to Wales
talking to local volunteers, we are delighted
to add two new groups to our directory!
The Cardigan Hard of Hearing Group, run
by Wales Council for Deaf People, will now
have a dedicated session several times a
year on tinnitus and have changed their
name to the Cardigan Tinnitus & Hard of
Hearing Group.
The volunteer-led Brecon Tinnitus & Hard of
Hearing Group are also very keen to support
people with tinnitus with our help. There are
now eight BTA-registered tinnitus groups
across Wales and counting!
We would love to see more groups emerge
across Wales, if you are interested in
helping to set up a group, get in touch at
colette@tinnitus.org.uk or 0114 250 9933
And two in England!
We are also very happy to introduce
two new groups that will have their first
meetings at the end of September.
The Burnley & District group is led by
Brenda, a local volunteer, who says, “As
a tinnitus sufferer I thought it would be
of help to fellow sufferers if they could
have contact with a local support group
to talk about and to share experiences
of the problem”.
The new Stockport group is run by
Tony, another local volunteer, who says,
“I have lived with tinnitus for over 40
years. I want to share my experience
with others so that collectively we can
help and support each other to face this
daily challenge”.
To find out more about these groups or
to find your nearest group, please visit
www.tinnitus.org.uk/find-a-supportgroup
or call 0114 250 9933.
38
38 www.tinnitus.org.uk
QUIET 2019 Issue Three

SUPPORT GROUPS
Scotland
Edinburgh and SE Scotland
Glasgow
Northern Ireland
Armagh and Dungannon
Belfast
Craigavon
Derry
Enniskillen
Newry and Mourne
Omagh
North-West England &
Isle of Man
Blackpool
Bolton
Bury
Garstang
Isle of Man
Kendal
Liverpool/Aintree
Manchester
Prestwich
Runcorn
Sandbach
St Helens
Warrington
Widnes
Wales
Barry
Brecon
Cardigan
North Wales
Pontypridd
Pontyclun
Rhondda
Swansea
NEW!
NEW!
South-West England
Bournemouth and District
Bristol
Gloucester
Kingsbridge and District
Mid-Somerset
Taunton
Torbay
Truro
South-East England
Aldershot and District
Amersham
Ashford, Kent
Brighton
Canterbury
Crowborough
Dover
Faversham
Harpenden, Luton, St Albans
Haywards Heath
Hitchin and Stevenage
Lyndhurst/New Forest
Maidstone
Marlow/Farnham Cmn
Oxford
Pembury (West Kent)
Rochester
Rye
Salisbury
Southampton
Thanet NEW!
Watford
Worthing
West Midlands
Birmingham and District
Newcastle under Lyme
Shropshire
Stoke on Trent
Sutton Coldfield NEW!
Telford
Warwick
Whitchurch
Meeting dates & venues
Find out when and where these groups
meet by checking the Support Groups
Directory online at www.tinnitus.org.uk/
find-a-support-group or contact us on
0800 018 0527 or helpline@tinnitus.org.
uk. For support in the Republic of Ireland,
the Irish Tinnitus Association will be happy
to help on (0)1 817 5700.
North-East England
Chester-le-Street
Darlington
Durham
Newcastle
Peterlee
Yorkshire & Humber
Bradford
Keighley
Rotherham
Rotherham Central
Sheffield
Wakefield
York
East Midlands
Chesterfield & N Derbyshire
Derby
Leicester
Lincoln
Northampton
Nottingham
East of England
Bury St Edmunds
Cambridgeshire
Chelmsford
Colchester
Ipswich
King's Lynn
Lowestoft
Norwich/Norfolk
Southend-on-Sea
London (within M25)
Bexley
Borehamwood
Bromley
Chiswick
Greenwich
Hornchurch
Isleworth (West Middlesex)
Kingston
North London
Orpington
Redbridge
QUIET 2019 Issue Three www.tinnitus.org.uk 39

BSA eConference
2019
GL
BAL
CONNECTIONS
The UK’s largest virtual Audiology
Conference featuring eminent speakers
on a wide range of Audiology topics.
December 2019
For more information and to register
visit
@BSAudiology
www.tinnitus.org.uk
www.thebsa.org.uk
@BSAudiology1
QUIET 2019 Issue Three