Quiet - Issue 2 2021

Quiet magazine | Issue 2 2021 | From the British Tinnitus Association

Quiet magazine | Issue 2 2021 | From the British Tinnitus Association


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QUIET<br />

<strong>Issue</strong> Two <strong>2021</strong><br />

QUIET <strong>2021</strong> <strong>Issue</strong> Two 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 />

Harley Street<br />

Hearing<br />

Hearing Therapy<br />

Ltd<br />

Hidden Hearing<br />

The<br />

Hearing<br />

Coach<br />

Lakeland<br />

Hearing<br />

Nuheara<br />

RNID<br />

Snugs<br />

Earphones Ltd<br />

Tinnitus<br />

E-Programme<br />

Doncaster and<br />

Bassetlaw Teaching<br />

Hospitals NHS<br />

Foundation Trust<br />

Royal Cornwall NHS<br />

Foundation Trust<br />

Always Ear<br />

Better<br />

Hearing<br />

Clinic<br />

Chippendale<br />

Hearing<br />

Flare<br />

Audio<br />

Harbeth<br />

Audio Ltd<br />

Hear Pure and<br />

Wellbeing<br />

HiKent<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 />

East Kent University<br />

Hospitals NHS<br />

Foundation Trust<br />

Royal Hallamshire<br />

Hospital<br />

(Sheffield Teaching Hospitals<br />

NHS Foundation Trust)<br />

AngliEAR Hearing &<br />

Tinnitus Solutions<br />

Bollington Hearing<br />

Centre<br />

Cubex Ltd<br />

Geraint Davies<br />

Hearing Ltd<br />

Hear Again<br />

Limited<br />

Hear We Care<br />

Holland<br />

Doctors of<br />

Audiology<br />

M C Hearing<br />

Oto Health Ltd<br />

Simply Hearing<br />

Sound Matters<br />

The Outside Clinic<br />

Hospital<br />

services<br />

Gloucestershire<br />

Hospitals NHS<br />

Foundation Trust<br />

Sandwell and West<br />

Birmingham Hospitals<br />

NHS Trust<br />

Audiological<br />

Science<br />

British<br />

Academy<br />

of Audiology<br />

Diane<br />

Hammond<br />

Independent<br />

Audiologist<br />

Guymark UK<br />

Limited<br />

Hearbase<br />

Hearwell<br />

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 />

Nobles Hospital<br />

Isle of Man<br />

Torbay and South<br />

Devon NHS<br />

Foundation Trust<br />

Audiological<br />

Specialist<br />

Care Ltd<br />

British Society<br />

of Audiology<br />

Duearity<br />

Halo<br />

Hearing<br />

Solutions<br />

Hearing<br />

Power<br />

Help in<br />

Hearing Ltd<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 Berkshire NHS<br />

Foundation Trust<br />

Worcestershire Acute<br />

Hospitals NHS Trust

Supporters 02<br />

Thank you to our Corporate Members<br />

BTA news 04<br />

Notice of AGM<br />

How you can support us<br />

Save the date: Tinnitus Week<br />

Fundraising 14<br />

Meet the marathon runners<br />

Research 16<br />

Marie and Jack Shapiro Prize<br />

The BTA Virtual Conference<br />

Real lives 21<br />

Adaobi, Geoff and Nick share their<br />

stories of living with tinnitus<br />

Tinnitus support 25<br />

Tinnitus support team<br />

Meet the volunteer - Louise<br />

Tinnitus support group listings<br />

QUIET<br />

Volume 32 Number 2 ISSN: 0968-1264<br />

Urgent appeal 06<br />

We desperately need more Tinnitus<br />

Support Advisers<br />

Sound sensitivity 08<br />

Getting back to a loud world<br />

Supersensitive connection causes<br />

hatred of noises<br />

Louise's story<br />

Fake or fabulous? 19<br />

Can CBD gummie sweets really cure<br />

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.

BTA NEWS<br />

Notice of AGM<br />

Christmas is coming!<br />

As holding a virtual AGM last year<br />

was so successful in increasing<br />

participation, we have decided to hold<br />

the <strong>2021</strong> meeting online.<br />

The AGM will take place via the Zoom<br />

platform on 7 October at 6.00pm. We<br />

do hope you can join us. To register to<br />

attend please sign up at:<br />

tinnitus.org.uk/virtual-agm-<strong>2021</strong><br />

As well as the business of the day -<br />

approving our accounts and voting<br />

in new Trustees - there will also be a<br />

presentation from our Chief Executive<br />

David Stockdale on the activities of<br />

the BTA.<br />

If you are a member of the BTA, you<br />

will find a copy of the AGM papers<br />

included with the magazine. This<br />

includes a summary financial report,<br />

and the candidate statements for<br />

potential Trustees. Also included is a<br />

voting form - please complete this and<br />

return it to us in the envelope included<br />

by 4 October.<br />

Although we're still living in uncertain<br />

times, some things never change - and the<br />

approach of Christmas is one of them.<br />

Send your good wishes to absent friends<br />

and family and support our work with our<br />

new 100% plastic-free Christmas cards.<br />

Choose a pack of 10 cards and envelopes<br />

from the following designs for just £4.50:<br />

1. Skating Time 2. Robin on a Handle<br />

3. Woodland Stag 4. Nativity<br />

The message inside all the cards is<br />

'Season's Greetings'.<br />

As a member, you’ll receive 10% discount<br />

on any Christmas card orders. You can<br />

order at tinnitus.org.uk/shop, or call 0114<br />

250 9933, or post your order request along<br />

with your name, address and cheque using<br />

the FREEPOST BTA envelope enclosed.<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

Last chance to win £1,000!<br />

• 1st prize: £1,000 donated by ESP<br />

Projects<br />

• 2nd prize: Nuheara IQbuds2 MAX (worth<br />

£349)<br />

• 3rd prize: £100<br />

We were blown away in spring as you<br />

helped to raise nearly £5,000 in our Easter<br />

Raffle to fund our vital work for the tinnitus<br />

community.<br />

With this in mind, you now have the chance<br />

to enter our Summer Raffle, with a new<br />

bigger cash prize of £1,000.<br />

Entries are just £2 each and you will be in<br />

with a chance of winning:<br />

To enter, please either:<br />

• Donate online at uk.virginmoneygiving.<br />

com/fund/summer-raffle<br />

• Call 0114 250 9933 to make a payment<br />

• Post a cheque/postal order along with<br />

your name, address, phone number and<br />

how many tickets you’d like to buy, using<br />

the FREEPOST BTA envelope enclosed.<br />

The raffle closes on Monday 13 September.<br />

All tickets will be entered into an online<br />

random generator and winners will be<br />

selected on our live Facebook draw on<br />

Thursday 16 September. Good luck!<br />

Entrants must be 18+ and reside in the UK.<br />

For full T&Cs, see our website for details.<br />

QUIET <strong>2021</strong> <strong>Issue</strong> Two www.tinnitus.org.uk 5

URGENT<br />

APPEAL<br />

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

The increase in calls to our helpline during<br />

the pandemic means we desperately need<br />

more Tinnitus Support Advisers.<br />

We have all faced challenges during the pandemic. For people living with<br />

tinnitus, isolation and reduced access to health services have led to a huge<br />

increase in calls to our tinnitus helpline for support. This surge in calls will<br />

not go away any time soon, with tinnitus now being recognised as an effect<br />

of long Covid.<br />

As the number of people accessing support from us rises, you can make<br />

sure we answer those calls. Please donate today to make sure a Tinnitus<br />

Support Adviser will be able to offer support, reassurance and information<br />

to people struggling to cope with tinnitus.<br />

We need your help to support more people. More people like Christina.<br />

Christina’s story<br />

“The ringing in my ear was all I could hear.<br />

It controlled me and I lost weight, became extremely<br />

anxious and withdrawn. I was a different person. I spoke<br />

to 8 or 9 doctors initially, who were all very quick to dismiss<br />

me, which made it worse as I just felt like a burden. I couldn’t<br />

cope. I called the BTA helpline during a panic attack, the lady that<br />

I spoke to was lovely and gave me lots of helpful information.”<br />

+143%<br />

The calls to<br />

our helpline have<br />

increased by 143%<br />

over the last year.<br />

And call numbers<br />

continue to rise.<br />

Your generous<br />

donation can<br />

make sure a Tinnitus<br />

Support Adviser<br />

answers that call<br />

to a person living<br />

with tinnitus when<br />

they need it most.<br />

Why our helpline services are vital<br />

Our helpline services include our telephone helpline, web chat, email<br />

and SMS text service. Our helpline is solely dedicated to supporting people<br />

with tinnitus when they need that support most. Please donate today.

What is the link between tinnitus and Covid-19?<br />

A recent study found that nearly half (46%) of UK sufferers reported that their<br />

condition had been made worse due to the impact of lockdown and lifestyle<br />

changes. Feelings of uncertainty, stress and anxiety caused by the pandemic<br />

– or even associated with having the vaccination – are known triggers of tinnitus.<br />

Tinnitus has also been officially recognised as a side effect of Covid-19<br />

and long Covid. And, because of limited GP availability and waiting times of<br />

almost a year or more for specialist tinnitus services, our helpline is often<br />

the only source of help for many.<br />

How you can help<br />

Please donate today to make sure that a Tinnitus Support Adviser can answer<br />

that call from Christina and many others like her. Christina knows what a<br />

difference that call made to her life. As the number of people asking us for<br />

help to cope with tinnitus rises, you can make that difference to the life of a<br />

person living with tinnitus. Your donation can ensure that people like Christina<br />

can receive the support, information and reassurance they need to live well.<br />

Meet some of our Tinnitus Support Advisers<br />

Here are some examples<br />

of the difference your<br />

donation can make:<br />

£15<br />

covers the average<br />

cost of a helpline call.<br />

£29<br />

could cover the<br />

cost of a dedicated<br />

Tinnitus Support<br />

Adviser for an hour.<br />

£88<br />

will pay for our<br />

Freephone line<br />

rental for a month.<br />

Jess<br />

David<br />

A few words from Jess:<br />

Isabelle<br />

"The generosity of our donors and fundraisers has kept me<br />

motivated whilst working from home. I look forward to still being<br />

here for people with tinnitus over our webchat and helpline."<br />

We are asking you to change the lives of more people living with tinnitus<br />

by donating now.<br />

Thank you in advance for helping us work towards changing the lives of<br />

people living with tinnitus. Your gift today will make a big difference tomorrow.<br />

Please donate £15 today to make sure that a<br />

Tinnitus Support Adviser can answer that call<br />

from a person living with tinnitus tomorrow.<br />

Thank you.<br />

Please<br />

donate today<br />

Help us support more<br />

people struggling with<br />

tinnitus and the effects<br />

of this unprecedented<br />

pandemic. We need<br />

your help now.<br />

Donate by using<br />

the reply slip and<br />

enclosed envelope or by<br />

visiting our website at<br />

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

urgentappeal<br />

Alternatively, you can<br />

call 0114 250 9933 and<br />

donate over the phone.



Many people struggle with hearing in<br />

background noise and some people also<br />

have a sensitivity to sounds. When this<br />

sensitivity brings stress and anxiety, this<br />

is called hyperacusis.<br />

After more than a year of quiet at home,<br />

perhaps you are worried about going back<br />

into the noisy social world?<br />

We'd like to give you some ideas to get<br />

started, but if you need more help, ask<br />

your GP for a referral to your local Audiology<br />

service.<br />

Dealing with noise sensitivity starts at<br />

home. A suggested approach is divided into<br />

four stages, which are all equally important.<br />

1. Prepare your ears<br />

Practise being in noise at home, by putting<br />

the television or some music on in the<br />

background. To make the sounds more<br />

realistic, you can use online or mobile<br />

phone apps to play a variety of sounds,<br />

including irritating ones like café noises!<br />

Play your chosen sound quietly while you<br />

focus on an enjoyable activity, such as<br />

reading or crafts. Test this out, did you<br />

manage ok? Play these sounds for a little<br />

while every day, starting with a quiet<br />

volume and building up as you get more<br />

used to it.<br />

If you have hearing aids, wear them<br />

at home, even if you are not talking to<br />

someone. This will help your ears get used<br />

to hearing all the little background sounds<br />

again. Again, start with a little time each<br />

day and gradually build up to wearing them<br />

all day.<br />

Avoid ear defenders unless you are in a<br />

noisy situation, as they will make your ears<br />

more sensitive to loud sounds.<br />

2. Prepare yourself<br />

Breathing exercises can help you to<br />

calm down, slowing your heart rate and<br />

distracting your mind. You can find many<br />

exercises online. Practise them at home<br />

in quiet, then with sound playing. Then,<br />

when you go out, you will already be ready<br />

if it is noisy.<br />

You can also prepare a 'thought-buster<br />

sentence' to make you feel better. Think<br />

of something you would say to reassure<br />

a friend in the same situation, something<br />

like "You were great at going out before and<br />

with practice, you'll be great again". Use<br />

this sentence every day so that it is easy to<br />

remember when you need it - maybe write<br />

it down, or save it as a phone message to<br />

yourself.<br />

It helps to get other people to help you, and<br />

be your 'buddy', both for support when you<br />

are out and for practice beforehand. Before<br />

you go out, agree with them what you'd<br />

like them to do - they could reassure you<br />

or prompt you to breathe, or give them the<br />

words to use if it gets too much.<br />

We all need a phrase to say to other people<br />

when noise is too much, such as "Is there<br />

somewhere quieter we can sit, as I'm<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

Prepare your ears<br />

• Practise being in noise<br />

with the TV, music or<br />

background sounds on<br />

• Do something relaxing<br />

while you learn to ignore<br />

these<br />

• Avoid using ear defenders<br />

• Use your hearing aids<br />

daily<br />

Tackle anxious<br />

thoughts<br />

• Practise controlling<br />

negative thoughts<br />

• What would you say to a<br />

friend who was anxious?<br />

• Write it down for yourself<br />

to read<br />

Use a trusted buddy<br />

• Tell them what is<br />

worrying you<br />

• Practise together<br />

• They can help you when<br />

you're anxious<br />

Position yourself in<br />

the best place<br />

• Having your back to the<br />

wall reduces noise behind<br />

• Choose places with good<br />

acoustics<br />

• Soft furnishings, such as<br />

cushions and curtains,<br />

help<br />

Keep calm<br />

and take<br />

your time<br />

Start easy<br />

• Choose a familiar quiet<br />

place to start<br />

• Take regular breaks<br />

• Feel good about the time<br />

that you stay<br />

Prepare a phrase<br />

and practise it<br />

"I've got sensitive ears -<br />

please can you turn the<br />

music down?"<br />

• Choose your own phrase<br />

and practise saying it.<br />

• You can write it on a card<br />

to show people, too<br />

Learn breathing<br />

techniques<br />

• Use calming breaths<br />

when anxious<br />

• Smell helps too - try a<br />

hankie with a favourite<br />

calming scent<br />

Make a plan<br />

• Then use your plan to<br />

learn from<br />

• What worked?<br />

• What will you do<br />

differently next time?<br />

finding it difficult with the noise level?"<br />

You could also write this down, or save it to<br />

your phone.<br />

3. Starting to go out<br />

Start with something easy when you first go<br />

out, such as sitting in the garden. Perhaps<br />

play some sounds while you relax. Next you<br />

could move to a chat in the street, or a quiet<br />

table outside a café. Plan to be there just<br />

a short time, and choose understanding<br />

people to meet. Build up gradually, one<br />

place at a time.<br />

For the first few times, go somewhere<br />

familiar. Try sitting with your back to a wall,<br />

and look for a place that has soft cushions<br />

or curtains to absorb noise. If you need to,<br />

use your 'too noisy phrase'.<br />

Try to immerse yourself in the situation and<br />

have fun being out. But keep your plan to<br />

hand: breathe; thought-buster sentence;<br />

buddy; too noisy phrase.<br />

Every now and again, go outside or to<br />

another room to take a break. While you<br />

are there, take deep breaths and say your<br />

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

thought-buster sentence.<br />

When a noise triggers your feelings, you are<br />

ready for this! Use your plan. If you need to,<br />

take another break. Once you are back in<br />

control, you may find that you can carry on.<br />

4. If things get too much<br />

If things get too much, it is ok to leave.<br />

After a few moments to yourself, you may<br />

find you can come back in again for a short<br />

time. Or you may feel this is enough for one<br />

day. This will be a gradual process, so it is<br />

good to spend short times in each situation,<br />

and increase them over weeks and months.<br />

Feel good for the time you spent in the<br />

situation: you are doing well!<br />

For situations where you feel you can’t<br />

leave, e.g. on public transport, it can help<br />

to have a back-up option in your bag or<br />

pocket. Ear defenders are not helpful in<br />

everyday situations, but it can help to<br />

reassure you to have them on hand if<br />

everything gets too much. If you have<br />

hearing aids, taking them out can have the<br />

same quietening effect.<br />

Once you have left, you can review how this<br />

went.<br />

• Did you use your plan?<br />

• If you did, what went well? Be proud of<br />

this achievement!<br />

• What didn’t go well? What have you<br />

learned?<br />

• If you didn’t use your plan, what stopped<br />

you?<br />

• What did your buddy see? Asking others<br />

can help to know what happened.<br />

You can use the breathing or mindfulness<br />

exercises to also restore your calm<br />

afterwards. Once you have learnt from<br />

the situation, leave it behind. Tomorrow<br />

will be a new day to try out your plan again.<br />

When you are rested, you can practise<br />

again. But make sure you take a break first!<br />

It is likely to take a few months to gradually<br />

get back into your everyday social and work<br />

situations. Be patient and kind to yourself,<br />

and enjoy the times that you do have out<br />

and about.<br />

If you are not finding these tips helpful,<br />

or need help to work through this, please<br />

do speak to either your Audiologist or<br />

Occupational Therapist, or ask your GP for<br />

a referral to your local Audiology service.<br />

This article has been written by Sarah Bant<br />

(Clinical Scientist in Audiology), Vicky Sadler,<br />

(Hearing Therapist),Karen Shearsmith-Farthing<br />

(Occupational Therapist) and Kathryn Fackrell<br />

(Researcher), with the help of people living with<br />

noise sensitivity. A longer version of this article<br />

can be found on the Dementia Voices website at<br />

https://bit.ly/NoiseLock<br />

Save the date!<br />

The BTA Virtual EXPO will be<br />

taking place over the weekend<br />

of 16 to 17 October <strong>2021</strong>.<br />

We will be delivering a range<br />

of online sessions for those<br />

with tinnitus, where we will be<br />

joined by tinnitus patients who<br />

will be sharing their stories<br />

and tips and answering your<br />

questions.<br />

Further details will be<br />

confirmed shortly. If you have<br />

any questions, please email<br />

events@tinnitus.org.uk<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

Supersensitive connection causes<br />

hatred of noises<br />

A supersensitised brain connection has<br />

been identified in people who suffer from<br />

misophonia, an extreme reaction to 'trigger'<br />

sounds.<br />

For the first time, researchers led by<br />

Newcastle University, have discovered<br />

increased connectivity in the brain between<br />

the auditory cortex and the motor control<br />

areas related to the face, mouth and throat.<br />

Lead researcher Dr Sukhbinder Kumar,<br />

said: “Our findings indicate that for<br />

people with misophonia there is abnormal<br />

communication between the auditory and<br />

motor brain regions – you could describe it<br />

as a ‘supersensitised connection’.<br />

“This is the first time such a connection<br />

in the brain has been identified for the<br />

condition.”<br />

Misophonia, which means ‘hatred of sound’,<br />

is a condition in which sufferers experience<br />

intense and involuntary reactions to certain<br />

sounds made by other people, referred to<br />

as ‘trigger’ sounds. Trigger sounds are often<br />

the sound of someone chewing, breathing<br />

or speaking.<br />

Their reaction is often extreme, and tends<br />

to consist of a combination of anger,<br />

disgust, fight-or-flight response, sometimes<br />

an urge to hurt the person making the<br />

sound or to leave the situation.<br />

The condition is common, affecting<br />

anywhere between 6% to 20% of people.<br />

Those with the more severe forms can find<br />

themselves unable to tolerate family, work,<br />

public or social situations.<br />

Previously, misophonia had been<br />

considered a disorder of sound processing.<br />

Dr Kumar added: “Interestingly, some<br />

people with misophonia can lessen their<br />

symptoms by mimicking the action<br />

generating the trigger sound, which might<br />

indicate restoring a sense of control. Using<br />

this knowledge may help us to develop new<br />

therapies for people with the condition.”<br />

Reference<br />

Kumar S, Dheerendra P, Erfanian M, Benzaquén E,<br />

Sedley W, Gander PE, Lad M, Bamiou DE, Griffiths<br />

TD. The motor basis for misophonia. Journal<br />

of Neuroscience. DOI: https://doi.org/10.1523/<br />

JNEUROSCI.0261-21.<strong>2021</strong><br />

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

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

Even the sound of my own<br />

voice can annoy me!<br />

Louise is 31 and has lived with<br />

misophonia all her life. Here she<br />

explains the impact it has on her.<br />

I can't remember a time when I wasn't<br />

sensitive to certain sounds but I've only<br />

realised that it's an actual condition with<br />

a name in the last five years or so.<br />

It doesn't seem to matter whether the<br />

volume of my trigger sounds is high or low<br />

- I will react. I get angry and frustrated and<br />

it's as if a rage comes over me, but I am<br />

learning to calm my reactions.<br />

I find the sounds of other people eating<br />

to be a big trigger but even the sound of<br />

my own voice can annoy me. When I was<br />

younger, I would only sit down to a family<br />

meal once a year, at Christmas. Even<br />

then I would go straight up to my room<br />

afterwards, which made my mum very sad.<br />

For a long time, I didn't ask for help. I had a<br />

guilty conscience about asking for support<br />

because I thought it would be wasting the<br />

doctor's time. However, I am now receiving<br />

counselling and getting support to help me<br />

to control my emotions, and I have been<br />

working on exposing myself to more noises.<br />

I am now actually able to eat out with<br />

others in a restaurant or if I'm out and<br />

about. There does have to be noise in the<br />

background though, and sometimes I have<br />

to play games on my phone. These both<br />

help my brain go somewhere else and treat<br />

the sound of eating as a background sound,<br />

so it's not too bad.<br />

Louise Lansbury<br />

My current challenge is managing the<br />

reactions to eating sounds at work. I work<br />

in a small office, with thin walls and no<br />

break room. My manager eats her lunch<br />

next to me - it's like a pair of speakers<br />

blasting in my ears. Fortunately my boss<br />

is okay with me listening to music through<br />

little headphones.<br />

At other times, headband speakers are<br />

the best thing ever, especially at night. I<br />

also practice butterfly breathing, which<br />

makes a fluttering noise inside my ears.<br />

When it does get too much, and I can feel<br />

the rage building, I step out and go and do<br />

something else instead. These things are<br />

really working for me, but I still have some<br />

way to go.<br />

I hope that by sharing my story I can help<br />

others to really understand what it's like<br />

to live with misophonia.<br />

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

Meet our marath<br />

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

Louise<br />

"In 2017, tinnitus<br />

hit me out of the<br />

blue. It devastated<br />

me emotionally and<br />

physically for a long time and affected<br />

my work and personal life a great<br />

deal. I had no idea how debilitating the<br />

effects could be (and continue to be<br />

for many people).<br />

"I cope much better these days and<br />

in fact now volunteer for the British<br />

Tinnitus Association to help others<br />

through tough times.”<br />

Hugo<br />

“Having seen my father<br />

suffer from it on a dayto-day<br />

basis, I began to<br />

recognise the lack of awareness<br />

and support (both medical and<br />

practical) for the condition.<br />

"This is shocking, given how many<br />

people are affected by tinnitus. I hope<br />

that I can use the London Marathon<br />

as a platform to fervently encourage<br />

others to donate to the BTA and put a<br />

spotlight on a condition that causes so<br />

much stress and discomfort.”<br />

The Virgin Money London Marathon is<br />

one of the highlights of the challenge<br />

event calendar.<br />

We're thrilled to have a wonderful group<br />

of fundraisers taking part this year. From<br />

power walkers to ultramarathon runners,<br />

each person has a different motivation for<br />

joining our marathon team and has kindly<br />

shared their story.<br />

Hugo will be running the marathon in<br />

person in London on 3 October whilst the<br />

rest of our team will complete the virtual<br />

event and choose their own 26.2-mile route.<br />

Donors and supporters play such an<br />

important role in keeping fundraisers<br />

motivated to push through their training<br />

and put one foot in front of the other on<br />

the big day.<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

on team!<br />

Challenger's<br />

challenge<br />

Karen<br />

“I developed tinnitus in 2017 following<br />

the death of my little brother, Squirt<br />

(Iain), and an extremely stressful 2016<br />

at work.<br />

"I was lucky enough to be referred to a<br />

hearing therapist who recommended<br />

the British Tinnitus<br />

Association as<br />

a place to find<br />

information and<br />

support. And<br />

they have been<br />

fantastic at both."<br />

Please cheer our runners on by donating to<br />

help raise vital funds and awareness.<br />

To make a donation securely online, visit<br />

tinnitus.org.uk/meet-our-marathonteam<br />

or call 0114 250 9933 to donate by<br />

phone.<br />

Thank you!<br />

Despite many changes to his original<br />

fundraising plans, Colin Challenger will be<br />

completing a mammoth walk this<br />

September to raise much-needed funds<br />

for a cause very close to his heart, as his<br />

mother suffered badly from tinnitus.<br />

He told us: “I had originally planned to walk<br />

the Hadrian’s Wall path (approximately 79<br />

miles) in May 2020 to raise money for the<br />

BTA but due to Covid-19, this wasn't<br />

possible. I will now be walking 33 miles<br />

along the Monmouthshire and Brecon Canal<br />

over the weekend of the 4 and 5 September<br />

which will be a big challenge.”<br />

We're so grateful that despite delays, Colin<br />

is still keen to complete his challenge to<br />

raise vital funds and awareness.<br />

Colin has nearly reached his £700 goal but<br />

needs your help to get there. You can donate<br />

at justgiving.com/colin-challenger or<br />

over the phone on 0114 250 9933.<br />

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

The Marie and Jack Shapiro Prize<br />

Marie and Jack Shapiro<br />

We’re pleased to announce the shortlist for<br />

the Marie and Jack Shapiro Prize, which is<br />

awarded to the published research paper<br />

by a UK-based author most likely to result<br />

in improved treatment or public awareness<br />

of tinnitus. It is intended to encourage<br />

researchers, public communicators and<br />

others to develop an interest in tinnitus,<br />

and to recognise their efforts.<br />

The prize is named after the late Jack<br />

Shapiro, the founder of the BTA, and his<br />

wife Marie, who both played an important<br />

role establishing the BTA and in raising<br />

awareness of tinnitus.<br />

The prize is judged by our Professional<br />

Adviser’s Committee – a panel of medical<br />

professionals and researchers with a<br />

special interest in tinnitus – with the winner<br />

due to be announced in October <strong>2021</strong>.<br />

The shortlist for <strong>2021</strong> covers papers<br />

looking at different aspects of tinnitus,<br />

from causes to management, including<br />

studies on the uptake of virtual tinnitus<br />

consultations; an evaluation of tinnitus<br />

services for children in the UK; a feasibility<br />

trial for psychology-based therapies<br />

delivered by audiologists and a several<br />

studies looking at tinnitus subtyping.<br />

We are delighted to see that vital<br />

tinnitus research has continued in these<br />

unprecedented times and a very difficult<br />

situation for researchers and clinicians.<br />

Despite a lack of funding and resource, the<br />

quality and relevance of research continues<br />

to grow year-on-year, and choosing the<br />

winner of this year’s Marie and Jack Shapiro<br />

Prize will be a very difficult decision.<br />

Whilst the Shapiro Prize recognises the<br />

fantastic work that is already being done<br />

in tinnitus research, much more is needed<br />

before we can realise our vision of a world<br />

where no one suffers from tinnitus. We<br />

are committed to funding, supporting and<br />

campaigning for tinnitus research now and<br />

in the future.<br />

For the full shortlist, including links to each<br />

of the papers, visit our website at tinnitus.<br />

org.uk/marie-and-jack-shapiro-prize-<br />

<strong>2021</strong>-shortlist<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

Maisie Carscadden, BTA Events Manager, looks ahead.<br />

Due to the success of our first virtual<br />

conference back in 2020, we have decided<br />

to remain online for <strong>2021</strong>.<br />

The BTA Virtual Conference <strong>2021</strong> – aimed<br />

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

professionals, psychologists, tinnitus<br />

support group leaders and researchers will<br />

take place online from 4 to 8 October.<br />

Attendees will get full access to our<br />

programme of lectures, case studies,<br />

seminars and networking opportunities<br />

across five days.<br />

International speakers<br />

Remaining online also allows us the<br />

opportunity to invite international speakers.<br />

You can expect to hear from speakers from<br />

far and wide, including Hasselt University,<br />

Ear Science Institute, The University of<br />

Western Australia, East Tennessee State<br />

University, UCL Ear Institute London,<br />

Antwerp University Hospital and many<br />

more.<br />

Themes and topics<br />

Each day of the conference presents a<br />

different theme, including the psychology<br />

of tinnitus, practical skills, and the latest in<br />

tinnitus research.<br />

Topics will range from paediatric tinnitus,<br />

tinnitus and hyperacusis and PTSD<br />

management and tinnitus, to the impact<br />

of tinnitus on professional musicians<br />

We understand that running the conference<br />

virtually is a more accessible format<br />

allowing us to reach more people from<br />

across the world. Over 400 attendees will<br />

come together this autumn to enjoy our<br />

sessions and engage in our live Q & A with<br />

our speakers.<br />

We are keen to ensure that the attendee<br />

experience is the best it can possibly be,<br />

so we are excited to announce that we will<br />

be using a new and improved platform<br />

for our virtual conference this year. The<br />

new platform will allow attendees to view<br />

profiles and network with others, including<br />

all our speakers and download materials<br />

straight from the live sessions, and CPD<br />

accreditation will be available (details to<br />

follow).<br />

All attendees will have access to all<br />

recordings and conference materials for<br />

12 months after the event, allowing you to<br />

watch sessions on-demand until October<br />

2022.<br />

Book now!<br />

Our booking site is now live. Tickets can<br />

be purchased from<br />

www.btaconference<strong>2021</strong>tickets.co.uk<br />

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

17 th Annual Conference<br />

British Academy of Audiology<br />

baaudiology<br />

@BAAudiology<br />

British Academy of Audiology<br />

18-19 November <strong>2021</strong><br />

Manchester Central<br />

Convention Complex<br />

Join us in Manchester to celebrate Audiology<br />

through the latest research, education and<br />

expertise, with inspiring speakers and informative<br />

sessions.<br />

We look forward to seeing you all in Manchester in November<br />

for two days of presentations, workshops, poster sessions and<br />

networking.<br />

Adult rehab, paediatrics, vestibular, tinnitus, service<br />

improvements, reflections on the past year and service changes<br />

post-Covid will all be on the agenda as we meet for the first time<br />

face-to-face after a challenging 18 months for everyone.<br />


• The Adrian Davis lecture to be presented by Professor Kevin Munro, Ewing Professor of Audiology, University<br />

of Manchester<br />

• The Bamford lecture to be presented by Dr Paul Johns, Consultant Neuropathologist & Reader in Clinical<br />

Neuroanatomy, St George’s Hospital, London<br />

• Other Keynote speakers include Dr Patricia Oakley, Professor Jason Warren and Professor Cynthia Casson<br />

Morton<br />

• Parallel sessions looking at all aspects of Audiology across all sectors from research to clinical practice,<br />

encompassing commercial aspects<br />

• Awards programme to acknowledge individuals and teams who have excelled in the Audiology profession<br />

• The UK’s largest Audiology exhibition<br />

• Exciting networking opportunities<br />

• And much more!<br />

If you are a healthcare professional with an interest in any aspect of Audiology then<br />

you will benefit from attending this conference.<br />

For more information visit www.baaudiology.org/conference

Fake or fabulous?<br />

BTA Communications Manager Nic Wray looks into CBD gummies<br />

You may have seen email or social media<br />

advertising promoting CBD gummies as a<br />

cure for tinnitus, or perhaps you’ve even<br />

come across a headline and an apparent<br />

independent news story claiming there has<br />

been a breakthrough in tinnitus treatments.<br />

This could be life-changing news if true –<br />

so what’s the real story behind these<br />

products, and why aren’t the BTA telling<br />

people about them?<br />

What are CBD gummies?<br />

CBD gummies are being widely marketed<br />

under a number of different names – some<br />

of them related to TV programmes or<br />

celebrities (including journalists and<br />

religious figures).<br />

The gummies are small jelly sweets<br />

containing the cannabis extract CBD.<br />

CBD is one of the many chemicals called<br />

cannabinoids which are naturally found<br />

in cannabis plants.<br />

Even though it comes from cannabis<br />

plants, CBD doesn’t give you a ‘high’ –<br />

that’s caused by another cannabinoid<br />

called THC.<br />

Cannabinoids and tinnitus<br />

To date, there have been very few studies<br />

into the effects of cannabinoids on tinnitus.<br />

However, the current evidence from animal<br />

studies suggest that they could in fact lead<br />

to increased activity in the auditory areas<br />

of the brain, and hence actually increase<br />

tinnitus.<br />

The side effects of CBD products can<br />

include nausea, fatigue and irritability.<br />

CBD can also affect liver function.<br />

Licences for the use of CBD extract as<br />

medicine have not yet been granted.<br />

Buyer beware!<br />

It is important to remember that the<br />

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

supplements market is unregulated,<br />

and products vary widely in quality and<br />

ingredients. Some may not contain any<br />

CBD at all, and some may contain illegal<br />

levels of THC.<br />

In our research into CBD gummies, we have<br />

found confusing information about what<br />

the products contain. Different suppliers<br />

list different ingredients for the same<br />

product, so it is difficult to know what<br />

you may be taking.<br />

Some people who have bought CBD<br />

gummies have told us that much larger<br />

than expected payments have been taken<br />

from their credit cards, and complaints to<br />

sellers are going unanswered.<br />

We have seen ourselves that some buyers'<br />

full details are easily viewed on one of the<br />

product-selling websites, leaving people<br />

vulnerable to fraud and identity theft.<br />

Some selling websites give buyers the<br />

impression that the product is sold,<br />

promoted or otherwise endorsed by<br />

the BTA. This is untrue.<br />

Our verdict<br />

We strongly suggest avoiding CBD gummies<br />

and their sellers. There is a lack of evidence<br />

for the effectiveness of CBD products for<br />

tinnitus, and potential risks for harm, not<br />

least to your wallet!<br />

Sadly, there will always be unscrupulous<br />

people willing to profit from people’s desire<br />

to improve their health and wellbeing.<br />

For more information on the claims for<br />

many advertised supplements, visit www.<br />

tinnitus.org.uk/tinnitus-treatments<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

It really isn't a giggle<br />

Adaobi Nwachuku first heard about<br />

tinnitus from a stranger.<br />

I first heard of tinnitus about 11 years ago from an<br />

elderly gentleman who struck up a conversation<br />

while we were waiting for our trains. At first, we<br />

chatted about the weather and the length of<br />

time it was taking for the train to arrive. I can’t<br />

remember how we started talking about his health<br />

and the ringing in his ears. He was full of humour<br />

when he described how he wasn’t sure which ear’s<br />

tune he was expected to jig to. He described it as<br />

a ‘ting ting’ in one and a ‘bang bang’ in the other<br />

and we had a giggle about it. As got on my train,<br />

I remember thinking what an awful experience to<br />

have and for some reason, I never forgot him.<br />

Pulsing rhythmically<br />

A decade later, I have been diagnosed with the<br />

same condition, and it really isn’t a giggle. It all<br />

started when I got ill around November 2018. I had<br />

to be on a lot of painkillers and antibiotics. After<br />

the last dose of antibiotics I received, I noticed<br />

that my right ear felt like it was full of water and<br />

seemed like it was pulsing rhythmically with my<br />

heartbeat. It was very uncomfortable and near<br />

unbearable, but I thought it would clear by itself<br />

after a couple of days. It didn’t. At the same time,<br />

my blood pressure was dangerously high. We<br />

thought if we brought the blood pressure down,<br />

the pulsing would stop, but it did not.<br />

Very dismissive<br />

When I tried to talk to the GP about it, he was very<br />

dismissive, but I was insistent and got referred<br />

to a consultant. I was actually confident that this<br />

would now get sorted, and I would go back to being<br />

normal. Unfortunately, I was discharged by the<br />

consultant almost a year later with a diagnosis of<br />

pulsatile tinnitus and a "sorry we can’t do anything<br />

for you".<br />

It was good to know that it wasn’t a tumour in my<br />

brain causing the pulsing, but it was hell knowing<br />

that nothing could be done about this and I had<br />

to manage this situation with external sources of<br />

Adaobi Nwachuku<br />

noise, to distract me from the internal whooshing<br />

that would not stop.<br />

I hardly have quiet moments<br />

I have now had this condition for over two years.<br />

Sometimes I can ignore it, other times it will not<br />

be ignored. It just pulses hard and loud without<br />

respite. I hardly have quiet moments; in fact, I have<br />

not had a quiet moment in months. I manage it<br />

with music (I am hardly without my headphones)<br />

and can only fall asleep on my right side with the<br />

pulsing ear on the pillow.<br />

Sometimes telephone conversations are difficult,<br />

because I am working extremely hard to listen<br />

through the constant pulsing. Sometimes when<br />

I hear external noise I have to ask other people if<br />

they heard the same noise just to make sure it is<br />

not my tinnitus.<br />

I believe that awareness will help to push more<br />

research into this condition and treatments that<br />

will bring well needed relief to so many people.<br />

Visiting the BTA website will help you learn more<br />

about it and how you can help.<br />

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

90 not out!<br />

Geoff Standley is one of our oldest (at 90!) and longest-standing members. Here he shares<br />

his memories of his time supporting the BTA and the tinnitus community.<br />

My story begins in 1975, when in my midforties<br />

I was diagnosed with tinnitus,<br />

a high-pitched whine in my right ear.<br />

Eventually I was fitted with a masker which<br />

did help and was told that there was no<br />

cure and that I would have to learn to live<br />

with it.<br />

This dreadful intrusion into my healthy life<br />

was undoubtedly caused by the frequent<br />

use of an ultrasonic cleaner at work (no<br />

ear defenders supplied).<br />

The loss of both of my parents within six<br />

months sent me into a spiral of depression.<br />

Family life for my wife and two teenage<br />

daughters was severely disrupted. When<br />

I realized that I was becoming addicted<br />

to my medication, I knew that I had to<br />

do something. Gradually and very slowly<br />

I weaned myself off my ‘smarties’, life<br />

improved, and there was light at the end<br />

of the tunnel.<br />

Fortunately, some time later I spotted an<br />

article in the local newspaper written by Bill<br />

Anderson, who ran a tinnitus support group<br />

in Leeds and I went along. I soon became<br />

involved on the committee and in 1983 ran<br />

in the James Herriott half marathon<br />

to raise funds for the BTA.<br />

In 1987 I became Chairman of the group<br />

and our meetings relocated to the General<br />

Infirmary in Leeds where we established<br />

a good relationship with the Audiology<br />

department.<br />

The Leeds Tinnitus Information Service was<br />

Geoff Standley<br />

inaugurated when 5,000 pre-addressed<br />

cards were distributed to ENT clinics, GP<br />

surgeries, health centres and libraries.<br />

I also started home visits, as I was<br />

approached by a GP to visit a gentleman<br />

who had taken an overdose whilst waiting<br />

for an ENT appointment. However, after<br />

visiting a distressed young lady who lived<br />

in a one-room bedsit flat, I realised that by<br />

making an unaccompanied visit I had put<br />

us both in a vulnerable situation and ended<br />

my home visits forthwith.<br />

In 1993, my wife and I had a three-month<br />

6,000-mile trip in our motorhome to<br />

France, Spain, Gibraltar and Portugal.<br />

Visiting the shrine at Lourdes I did not have<br />

any preconceived idea of a cure for my<br />

tinnitus, but joining hundreds of pilgrims in<br />

the candlelight procession was a moving,<br />

calming experience.<br />

Four weeks later, we arrived in Gibraltar. I<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

was last in Gibraltar in 1951 where I served<br />

14 months of my National Service, so I was<br />

very keen to try and establish a self-help<br />

group on the Rock. I held a very successful<br />

meeting. I took lots of information with me<br />

and spoke for about an hour answering<br />

many questions. The following day I<br />

recorded two interviews for Gibraltar radio<br />

and television, so I am hopeful that the BTA<br />

will have a contact in Gibraltar. [Yes, there is<br />

still a tinnitus support group in Gibraltar – ed.]<br />

In May 1994, as keen long-distance walkers<br />

my wife Wendy and I took on the challenge<br />

of the Coast to Coast walk to raise funds<br />

for the BTA.<br />

In 1997, I resigned as Chairman of the<br />

Leeds Group and became Chairman of<br />

the Bradford group the following year. The<br />

Tinnitus Information Service started in<br />

Leeds continued with the distribution of<br />

3,000 cards.<br />

I endeavoured to keep the format of<br />

monthly meetings as varied as possible<br />

with talks on homeopathy, acupuncture,<br />

flower arranging, the Fire Service, Yorkshire<br />

Water and Samaritans, a canal cruise and<br />

fish and chip parties at Christmas.<br />

The most popular meetings were about<br />

tinnitus with talks from audiologists and<br />

consultants and we were very privileged to<br />

be addressed by Dr Terry Buffin, Dr Peter<br />

Tungland, Dr Ross Coles and Dr Ewart<br />

Davies.<br />

The group was able to establish tinnitus<br />

noticeboards in three major hospitals, and<br />

sponsor two audiologists to attend the<br />

BTA Tinnitus Adviser Training courses in<br />

Nottingham.<br />

I reluctantly resigned as Chairman of the<br />

Bradford Group in September 2006 and<br />

was awarded Honorary Life Membership<br />

Some of Geoff's collection of clippings<br />

of the BTA.<br />

During my involvement with the BTA<br />

my wife and I travelled extensively.<br />

We have been blessed with having<br />

seven grandchildren and three greatgrandchildren<br />

who have kept us busy.<br />

Aged 84, I joined a local mandolin group<br />

which then inspired me to take up keyboard<br />

lessons resulting in me playing in a<br />

local nursing home and a signing group,<br />

fundraising for charities.<br />

I am now disabled but still able to drive my<br />

adapted car and use a mobility scooter.<br />

I have several hobbies and enjoy a daily<br />

crossword.<br />

Tinnitus? Yes I still experience a highpitched<br />

whine in my right ear, but I guess<br />

that I have been and still am too busy to<br />

let it intrude into my still wonderful life.<br />

Geoff asked that this article be dedicated<br />

to Wendy Standley, who passed away in<br />

February 2020.<br />

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

Nick's story: Learning to ignore the<br />

noisy bunch that's moved in with me<br />

Two-and-a-half years ago, as I dozed off in bed<br />

after celebrating a friend’s birthday at a club, I<br />

suddenly noticed an intermittent, high-pitched<br />

sound I hadn’t before. I checked all the surrounding<br />

appliances to no avail, before realising with alarm<br />

the noise was coming from me. It was the start of<br />

an ongoing battle with tinnitus.<br />

When I went to the GP to request a referral to an<br />

ENT specialist, he irritably replied, "I don’t know<br />

who told you about that but it’s not what we do".<br />

He handed me an information sheet about finding<br />

distractions and managing stress, and that was it.<br />

I felt like I’d wasted his time. Sadly, this experience<br />

is all too common amongst sufferers, though I’ve<br />

since discovered it is possible to be referred to a<br />

specialist through the GP.<br />

Immensely reassuring<br />

Tinnitus isn’t taken seriously by many in the<br />

medical community, and due to the chronic<br />

underfunding of research there are few, if any,<br />

viable treatment options. In fact, it receives forty<br />

times less funding than comparable conditions<br />

like depression, anxiety and hearing loss. This is<br />

why it’s immensely reassuring to know the BTA is<br />

working on our behalf to offer advice and support<br />

and help find medical solutions to this horrible<br />

condition. It provides hope, which is a vital<br />

source of comfort when the noise starts<br />

to feel overwhelming.<br />

Background chatter<br />

I was 20 when I developed tinnitus, and it has<br />

gotten louder since then; in addition to the<br />

intermittent ringing that began in my left ear,<br />

there’s now a constant ringing and hissing in both.<br />

I take my mind off it by going for a walk, or getting<br />

some work done in a coffee shop where it blends in<br />

with the background chatter. Oddly, it doesn’t really<br />

affect my sleep. It’s when I’m trying to concentrate<br />

- reading, working or watching TV for example -<br />

that it bothers me. As an aspiring writer this isn’t<br />

ideal, but I’ve adjusted to it over time. Eighteen<br />

months ago, I never imagined myself sitting here<br />

Nick Benton<br />

calmly writing an article amidst the sound of angry<br />

snakes and chirping crickets; yet I am.<br />

False information<br />

Are you new to tinnitus and unsure what to do?<br />

I’ve been there. Firstly, try to stick to trustworthy<br />

sources like the BTA and NHS websites if you<br />

need to research. The internet is awash with<br />

false information and horror stories - neither are<br />

helpful. Secondly, buy some good ear plugs. A<br />

custom-moulded pair, which I eventually bought<br />

and now carry everywhere with me, will set you<br />

back around £80; if that’s outside your budget, I’d<br />

recommend the filtered rubber plugs for £10-£20<br />

instead. Thirdly, don’t think too far ahead and keep<br />

to your daily routines as best you can.<br />

Get involved<br />

I’ll end with a request. Get involved in the fight<br />

to have this condition recognised for what it is<br />

- highly prevalent, potentially debilitating and in<br />

desperate need of more research. Write, volunteer,<br />

fundraise, donate - do whatever you can! Together,<br />

we can create a quieter future for those living with<br />

tinnitus. But first we must make some noise.<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two


Our Tinnitus Support Team are here to<br />

help anyone who is affected by tinnitus,<br />

whether you have tinnitus yourself, or have<br />

a relative, friend or colleague who needs<br />

help with the condition.<br />

We know getting in touch with a helpline<br />

can be quite daunting for some. Picking up<br />

a phone and making that first call takes<br />

courage, but we think it’s 100% worthwhile<br />

for those who do speak to us.<br />

And because we know not everyone wants<br />

to talk, we now have other ways for you to<br />

get in touch including web chat, text and<br />

email.<br />

“my chat with you<br />

calmed me like a<br />

discussion with a<br />

friend.”<br />

Hazel<br />

“Although I only recently started<br />

supporting the BTA with the helpline,<br />

I have already found this incredibly<br />

worthwhile. It is clear that those who<br />

ring up are struggling on their own and<br />

having someone who can listen, stay calm<br />

and help them makes such a difference to<br />

them.”<br />

If you need to talk, we are here for you.<br />

Our Tinnitus Support Advisers are<br />

available from 9am to 5pm, Monday<br />

to Friday and can be reached in the<br />

following ways:<br />

Our friendly team, consisting of both staff<br />

and volunteers, are here to help you by<br />

offering advice, information, support or<br />

just to be here to listen.<br />

Hazel is one of our volunteer team, and<br />

she told us:<br />

Freephone helpline: 0800 018 0527<br />

Web chat: www.tinnitus.org.uk and click<br />

on the web chat icon<br />

Text/SMS: 07537 416841<br />

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

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

Lenire is a non-invasive bimodal neuromodulation device that has been shown<br />

to reduce the symptoms of people living with tinnitus.<br />

Combining sound stimulation to the ear with mild electrical stimulation to the<br />

tongue, Lenire drives long-term neuroplasticity in the brain to treat tinnitus.<br />

In a recent large-scale clinical trial, published in Science Translational<br />

Medicine, the treatment was found to reduce tinnitus symptoms in 86.2%*<br />

of treatment compliant participants after a period of 12 weeks. Furthermore,<br />

80.1% of compliant participants reported reduced tinnitus symptoms that<br />

were sustained for at least 12 months after the treatment ended.**<br />

View our research and find out how you can refer<br />

your tinnitus patients at lenire.com/healthcare.<br />

*As measured by Tinnitus Handicap Inventory score<br />

**Conlon et al., Sci. Transl. Med. 12, eabb2830 (2020)<br />

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

QUIET <strong>2021</strong> <strong>Issue</strong> Two

Meet the volunteer<br />

Our volunteers are a very important part<br />

of the BTA team, providing support for<br />

everything from admin tasks to answering<br />

our helpline. Here, you can find out more<br />

about tinnitus support volunteer Louise.<br />

Tinnitus and I became constant<br />

companions on 1 November 2017. And as I<br />

type this story my auditory cortex remains<br />

busy with its ever-changing shrill whistling,<br />

swooshing, and white noise - yet<br />

somehow I let it pass through me<br />

these days without becoming<br />

a complete pile of anxiety<br />

any more.<br />

I believe my tinnitus was<br />

brought on due to a slight<br />

hearing loss (perhaps riding<br />

a motorbike without hearing<br />

protection for many years)<br />

and perhaps accumulated stress<br />

from my personal circumstances. My<br />

nervous system quickly went into overdrive,<br />

irrationally sensing some kind of serious<br />

danger or threat. From a couple of weeks<br />

in, I fought for months with chronic anxiety<br />

and severe sleep deprivation. I lost about<br />

25 lbs over six months and I gave up my job<br />

as a happy full-time dog walker, all because<br />

I felt unable to cope with anything.<br />

I initially got help with medication, and<br />

weekly counselling sessions for my<br />

anxiety. My partner and family were really<br />

supportive and tried to help me through<br />

it. But I still felt isolated and desperate.<br />

Not working unfortunately made matters<br />

worse.<br />

One day when I was feeling totally out<br />

of control, I went to my church to talk to<br />

the priest. The church was shut and there<br />

was no one around. I sat down in tears<br />

unable to cope. In desperation I called the<br />

BTA telephone helpline number. A very<br />

friendly, helpful lady on the end of the<br />

phone empathised and gave me lots of<br />

comforting support plus some practical<br />

advice. It was a significant moment for me.<br />

Even though it was quite a long road to<br />

habituation, once I managed to turn my<br />

life around, I became a member of<br />

the BTA, and recently started<br />

volunteering weekly on their<br />

web chat support line. I am<br />

also a BTA befriender.<br />

These roles are hugely<br />

rewarding because I am<br />

able to reassure people that<br />

normal life and tinnitus can<br />

go together! I talk to lovely<br />

people who deserve better lives.<br />

And I am participating in the virtual<br />

London marathon in October for the first<br />

time, raising money for the BTA and the<br />

NHS. If you would like to support me, you<br />

can donate at uk.virginmoneygiving.com/<br />

LouMartin59<br />

How did I make it back to a kind of<br />

normality? By letting anxiety go via<br />

therapy; relaxation exercises; sound<br />

enrichment; changing my mindset by<br />

challenging my negative thought patterns<br />

and going back to work. I try to minimise<br />

catastrophising!<br />

I think it's really important to be grateful<br />

every day for a few things in your life and<br />

knowing that “this too shall pass”. One day<br />

may be really difficult, but another will be<br />

better.<br />

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


Scotland<br />

Edinburgh and SE Scotland<br />

Forth Valley<br />

Glasgow<br />

Highlands NEW!<br />

Northern Ireland<br />

Belfast<br />

Craigavon<br />

Derry/Londonderry<br />

Enniskillen<br />

Newry and Mourne<br />

Omagh<br />

RNID Northern Ireland<br />

North-West England<br />

& Isle of Man<br />

Aintree<br />

Blackpool<br />

Bolton<br />

Cumbria<br />

Garstang<br />

Isle of Man<br />

Kendal<br />

Manchester<br />

Prestwich<br />

St Helens<br />

Stockport<br />

Widnes<br />

Wales<br />

Barry<br />

Brecon<br />

Cardigan<br />

Newport<br />

Pontyclun<br />

Pontypridd<br />

Rhondda<br />

Swansea<br />

Ystradgynlais<br />

South-West England<br />

Bournemouth and District<br />

Bristol<br />

Gloucester<br />

Kingsbridge and District<br />

Mid-Somerset<br />

South West England<br />

Taunton<br />

Truro<br />

South-East England<br />

Aldershot and District<br />

Amersham<br />

Ashford, Kent<br />

Aylesbury<br />

Basingstoke<br />

Brighton<br />

Canterbury<br />

Crowborough<br />

Dover<br />

Faversham<br />

Harpenden, Luton, St Albans<br />

Haywards Heath<br />

Hitchin and Stevenage<br />

Isle of Wight<br />

Lyndhurst/New Forest<br />

Maidstone<br />

Marlow/Farnham Common<br />

Oxford<br />

Pembury (West Kent)<br />

Rochester<br />

Salisbury<br />

Southampton<br />

Thanet<br />

Watford<br />

Worthing<br />

West Midlands<br />

Birmingham & District<br />

Newcastle under Lyme<br />

Shrewsbury<br />

Stoke on Trent<br />

Sutton Coldfield (on hold)<br />

Telford<br />

Warwick<br />

Whitchurch<br />

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

be planning to hold physical meetings.<br />

Find out when and where these groups<br />

are meeting by checking the Support<br />

Groups Directory online at bit.ly/<br />

TSGTT or contact us on 0800 018<br />

0527 or helpline@tinnitus.org.uk.<br />

We will ensure these groups have the<br />

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 />

Keighley<br />

Rotherham<br />

Rotherham Central<br />

Sheffield<br />

York<br />

East Midlands<br />

Chesterfield<br />

Derby<br />

Leicester<br />

Lincoln<br />

Northampton<br />

East of England<br />

Bury St Edmunds<br />

Cambridgeshire<br />

Chelmsford<br />

Colchester<br />

Ipswich<br />

King's Lynn<br />

Lowestoft<br />

Norwich/Norfolk<br />

Southend-on-Sea<br />

London (within M25)<br />

Bexley<br />

Boreham Wood<br />

Bromley<br />

Chiswick<br />

Greenwich<br />

Hornchurch<br />

Isleworth (West Middlesex)<br />

Kingston<br />

North East Essex<br />

North London<br />

Orpington<br />

Redbridge/Hackney<br />

Key<br />

BTA Gold Standard group<br />

Meeting online

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