My Hearing Loss Story

Anthony’s Hearing Loss Story

Since I’m blind, the sound I can’t take for granted any more, literally means the world to me. It is the key to my independence, to the travels and adventures I’m having and to the communication that keeps me connected and grounded in this world.

Anthony first contacted me after listening to Hearing Me, an audio documentary, which gives a glimpse into my world, following my experience of sudden hearing loss.

He wrote to tell me that he was ‘deeply affected’ by the way my story had been brought to life. He told me that he also has hearing loss, though he remarked, ‘For me, it means more than just that.’

I was intrigued to find out more about Anthony, and he allowed me the opportunity to interview him via Skype when he told me his story.

Hi Anthony, can you tell me a little about yourself?

Hi, my name is Anthony Reyers, I’m 27 years old, I was born and raised in Belgium where I am still right now. I’m an only child and my parents still happily live together. Thank god for them because they are always there to support me, which I am very very very happy for.

I was born blind because of this thing called Norrie Disease. It’s a very rare genetic disease… and actually, I didn’t know I was going to have any problem with my hearing until I was 18.

I’m interested in everything audio and music. When it comes to audio, it all really started with a radio receiver that I got from Santa Claus when I was about 7 years old. I started browsing the radio stations and I found really interesting things there because at this time in Belgium there were quite a few radio stations that were broadcasting not-so-mainstream music, and that’s really how I found out about the electronic dance scene.

Later on, I got really really happy to find my partner in crime, Xander, from the Netherlands… Now we’re also producing together which means that we create our own tracks, our own songs. And yeah, somehow it seems that the career as a DJ producer starts to get some attention because I’ve just received a booking request for a major festival in our scene this summer in the Netherlands. For me, this is seriously a dream coming true… It’s one of the most incredible things that you do because then you have a feeling that the stuff you’ve been making has some meaning to some people.

And, aside from that, I’m spending lots and lots of time for an organisation called ICC Belgium which is an organisation that I co-founded. It’s an organisation that tries to increase the independence for blind and visually impaired people, giving them a community that they can rely on. It’s an international summer camp… We organise training, all about technology and social skills for blind and visually impaired people. I really love helping other blind people out and teaching them what I know… I think that, as a blind person, our organisation can show that there is a way to be a good, confident, independent human being in society… and that your only limit is your own imagination.

Because of [ICC Belgium], I’ve become an avid traveller. I’ve begun to travel to new places, in my own way. For example, I went to India not so long ago, and I didn’t go there to be the tourist and look at the Taj Mahal. Actually, I went there to visit lots of social projects. I talk to people working with blind people, but also with people who are doing stuff with gay rights, with mental disabilities, with the #MeToo movement there within the movie industry, and also with ecological farming, and so on and so forth… What makes travel really great for me is when I kind of embed with the people that are local, in the sense that I stay with them, I live with them, I live their lives. Usually, I miss out on lots of sightseeing opportunities, but that’s OK because, for me, travelling is all about interacting with the people around me and feeling their stories.

Definitely. You get the true experience of someone who lives there… Let’s get onto the next question.

I gave you quite an extended answer on this one!

It was fantastic! OK, tell me about Norrie Disease. What’s your experience of it?

Norrie Disease is a recessive x-linked genetic disease, very rare. I think we’re about 500 people in the world. That’s our estimate right now – it might be a little more. But, it’s difficult to know since it’s still under-diagnosed as well. Usually, it results in blindness from birth.

My parents were told that since I was actually born with normal hearing, that this would, most probably, just be what I would have. Now, that was a gross misinformation, because what actually happens is that the hearing loss is progressive and happens over time. Usually, it starts to be measurable around the age of 12 or 13, which happened with me. Back then, I thought I was losing hearing because of loud music that I was listening to in my earphones, or that’s what people told me.

But then, later on, I still remember, it was February 2010, I was almost 18. I was sitting in my room, and suddenly it felt like somebody pushed something really heavy against my ear, you know, and suddenly the sound was gone in one of my ears. And, a few minutes later came a very loud loud screeching tinnitus. I think this sounds familiar because it sounds pretty much like sudden sensorineural hearing loss.

Yes, that sounds like my story.

And this was the first major Norrie attack that I had.

I went to look up Norrie on Wikipedia and then I saw that two-thirds of people actually start losing their hearing at some point in their lives with Norrie, which [I now know] is wrong – everyone does!

I didn’t look up my disease for 18 years, because I wasn’t interested. I didn’t really care about the name of my disease. I mean, I was like, OK, apparently I have a genetic disease and I’m blind. OK, fine. But then I realised, suddenly, that there was a lot more to the disease than I knew.

How does Norrie Disease affect your life?

In the beginning, of course, my blindness affected me in many ways. I suppose it has something to do with the social exclusion that I had to go through during secondary school, which wasn’t very nice.

But mostly, when it comes to hearing loss, you suddenly realise that you can’t take your sound for granted, and you start to live everything 3 or 4 times as intense because you think, OK, is this the last time that I will experience what I am experiencing right now? So, it means that every euphoric moment is really really euphoric. But it also means that if something [bad] is going on, or someone is leaving you, or some opportunity that you wanted to have and you miss it for some reason, that this hits very hard as well. Because you’re thinking, Maybe I won’t have any other chance at this anymore.

Can you tell me about the level of understanding of Norrie Disease and the focus of current research?

There is a really hard need for research. The research that we are applying for now is going in a more radical direction, which is the direction of gene therapy.

We will have a theoretical model on how to basically apply the gene therapy, and then in the next stage, we will have tests on cells etc. to see if this thing works.

Also, we need to apply for research that’s on finding lifestyle variables that influence the hearing loss, or other factors that can influence this in a positive way, or if there are already drugs that are existing that can do some damage control.

You mentioned, in your email, that you are currently running a campaign to help raise funds for research into gene therapy…

Yes, in the UK, we have an organisation, The Norrie Disease Foundation (NDF), which is an organisation founded by families who have children affected by Norrie. They have some ambassadors, which I am one. And, basically, in the UK they’re doing massive efforts to raise awareness about Norrie and about this research.

There is an urgent need for funding to make research possible. The money raised from my campaign goes directly to the NDF.

We’re working together with SPARKS, which is a charity that’s founded by the Great Ormond Street Hospital (GOSH). and what they do is they multiply our fundraising money by 4 and then this is the budget that is put into the research. So with that money, they are funding the research of Norrie.

In his email, Anthony expressed the cruel reality of losing his hearing and the impact it will have on his life:

Voices are what I think of when I imagine my loved ones and they’re such an essential part of me that I simply can’t imagine living without them. As a DJ, producer and musician, music is my heartbeat, my passion, and what I live for every day.

If you would like to make a donation to help fund future research into Norrie Disease, please visit Anthony’s Crowdfunding page here.

And, to see Anthony presenting one of his tracks to Dutch DJ, Armin Van Buuren, on his radio show, click here.

It was an absolute pleasure to speak with Anthony. His passion for life and all things audio were a strong theme throughout our conversation, And, after saying goodbye, I felt elevated by his contagious positive energy. Thank you, Anthony, for sharing your story.

This article was recently published by Hearing Link.

Some Kind of Vestibular Disorder

With a lack of coordination-control and a pounding head, I feel both drunk and hungover. I’m walking on sand, sinking with every step.

Image by Pete Linforth from Pixabay

It’s Sunday afternoon. I’m lying on the sofa, a cushion between my knees. The culmination of pressure in my head and ears commands my attention. I feel as though I’m continually falling. I can’t rely on my legs to keep my balance. I’m dizzy. The force inside my head is making my eyes water.

I’m trying to focus my gaze. The small fan is rotating slowly; every few seconds it blows in the direction of the table making the tassels of the table runner dance in the soothing breeze. The window shutters are closed, keeping out the strength of the brightness from outside.

Around the corner from where I am lying, is my boyfriend who is in the kitchen, preparing food. I know it’s scary for him too – the unpredictable nature of this condition. The extractor fan whirrs tiredly amidst the muffled tap of the wooden spatula on the frying pan. There’s a soft hum of the radio and the smell of onions softening.

I’m frustrated. Trapped. I try to convince myself better, to think myself OK. It doesn’t work. My tinnitus squeals with more intensity than the usual soundtrack to my days. I want to be better. I’m so angry with this condition. When it decides to strike there’s no fighting it. Fighting will only aggravate it. I have to wait it out.

I remind myself to make sure I focus on the good days, to seize and enjoy them. But, on days like this, I have to let it win. I can’t beat it, I can only manage it with acceptance and with obedient patience.

In a dark and quiet room, there is no peace. High-pitched sparks are flying like shooting stars in my head. It feels like foam insulation – the type that builders use – has been sprayed into my left ear and is quickly expanding inside my skull, my jaw, my neck. Like an arm wrestle in stalemate, a band tightens around my head pushing against the strength of the packing. The pillow hurts my head when lying down. Sitting up, my head feels so painfully heavy.

The boat is more rocky than usual. The world seems to be spinning faster or has it slowed down? My arms and legs feel weak and loose. Simple coordination tasks demand a disproportionate amount of concentration. With a lack of coordination-control and a pounding head, I feel both drunk and hungover. I’m walking on sand, sinking with every step.

I’m looking through thunder clouds full of murky unclear pressure. Lights cause pain behind my eyes and it’s difficult to focus.

My body is on high alert. I’m more sensitive, nervy, jumpy. Even the smallest of noises make my heart tingle with nervousness. My energy is draining by the second. My thoughts are muddled, jumbled.

I’m trying to be patient, waiting for it to pass; trying not to feel guilty for not doing the things I wanted to, for not being productive. I don’t feel how I used to. I don’t feel like myself. I don’t want to be this person. This isn’t who I am. This isn’t who I’m supposed to be.

Diagnoses are ever-changing, multiplying and evolving with every new symptom.

Whether it’s days or weeks, this time, until the symptoms fade back to a low rumble, I know I will get through this.

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Airport Workers – Please Stop Shouting

Image by Jan Vašek from Pixabay

A friend of mine recently told me a story about how her elderly grandmother, who is in her eighties, had travelled to Spain. It was only the grandmother’s second trip ever, travelling abroad.

My friend, her mother, and the grandmother were all travelling together and the grandmother was briefed about what to expect at the airport. Whilst packing, my friend and her mum had distributed their clothes and toiletries between the three combined items of hand-luggage. They explained to the grandmother that, although they had done the packing for her, should she be asked by a security worker whether she had packed her own bag, to confirm that she had. The purpose of this question, they assured her, was intended for crimes considerably more sinister than sharing luggage space.

They all arrived at the UK terminal and the grandmother was enjoying seeing the sights and the activity of the airport. When they reached the security gates, my friend’s mother was separated from the group when she was directed towards another conveyor belt. My friend stayed with her grandmother. They had another discussion about restricted items and the importance of declaring any liquids in hand luggage, and then both sorted their belongings into trays, which they placed onto the conveyor belt to be scanned.

The grandmother’s bag was selected for further inspection, due to a suspicious item which had been detected by the scanner. (Spoiler alert: it turns out she had packed some face cream in her bag, not thinking this would be classed as a liquid.)

The grandmother, who finds verbal communication difficult without her hearing aids (which she had innocently taken off to go through the scanner) was asked the question, as predicted. The security worker spoke in a loud voice, with over-accentuated arm gestures, and although the grandmother was able to understand what was being said, she became nervous. Instead of simply answering “yes”, to establish that she had packed her own bag, she blurted out, “Well …no! … I mean they were putting all sorts of things in my bag!”

My friend burst into laughter! The poor grandmother had felt so nervous at the sight of the security officer waving her arms around, that she hadn’t been able to tell this little white lie.

The story prompted me to think about how stressful airports can be. I have lived and travelled in Europe and Southeast Asia, and have experienced many airports. Yet, I find airports in the UK to be some of the most stressful.

The main reason I find UK airports particularly stressful is because the customary code of behaviour for a large number of airport staff, seems to be shouting at travellers, often whilst herding them like livestock through the various elements of the airport procedures. The shouting of orders from airport workers increases my stress levels. This stress often makes me feel irrationally guilty and I sometimes even doubt my own credibility. Maybe I am carrying a sharp object. Maybe a bottle of water has somehow made its way into my hand luggage. Even with full hearing, this used to make me feel stressed. Now, with hearing loss and a sensitivity to sounds, the shouting seems louder, more uncomfortable.

Due to the lack of sound-absorptive soft furnishings in airports, I am frequently unable to understand what people are saying, as loud voices overlap each other, and the sound becomes distorted. I am a native English speaker and I feel stressed in this situation. Surely for other travellers, such as those whose first language isn’t English, this is also a cause of stress? Imagine being in an airport situation where staff members are shouting things you don’t understand.

During a recent airport experience, I was waiting in the queue at the security gate. I had already removed my boots and was holding my scarf and coat in my hands, ready to place in a tray to be scanned. As I approached the security conveyor belt, the shouting began:

FADE IN:

INT. UK AIRPORT, SECURITY GATE – EARLY AFTERNOON

SECURITY WORKER shouts something at ME, which I am unable to decipher.

I look at SECURITY WORKER with confusion, but am now focusing my attention on her – ready to listen to whatever she yells next.

SECURITY WORKER
(Impatient tone)
Do you have any liquids?

Me
No.

I put my head down as I begin to arrange my belongings into different trays.

SECURITY WORKER shouts something at ME, which I am unable to decipher.

I look at SECURITY WORKER again with confusion.

ME
I’m sorry, I’m hard of hearing.

SECURITY WORKER
(Shouting, with accentuated lip movements)
Are you carrying any makeup?!

ME
(Using a quiet voice, in an attempt to gently coax her volume level down a few notches)
No.

I put my head down and continue to arrange my belongings into different trays.

SECURITY WORKER shouts something again at ME, which I am again unable to decipher.

I Look at SECURITY WORKER again.

SECURITY WORKER
(Shouting)
Are you carrying any hand sanitizer?! Toothpaste?!

My belongings are neatly arranged into three separate trays. I look down as though I am giving this question some consideration.

ME
No.

I put my head down so as to not have to engage in any more questioning.

SECURITY WORKER
(Shouting)
Do you have any lighter fluid in your coat pocket?!

I look at SECURITY WORKER again. OK, I heard her this time, but I have had enough, and feign mishearing.

At this moment a more perceptive security worker behind me taps me on the shoulder and directs me towards the body scanner, bypassing further interrogation.

I walk through the body scanner and the inquisition continues behind me.

ANOTHER SECURITY WORKER
(Distant shouting)
Are you carrying a hairdryer, toaster, microwave?!

FADE OUT.

At the airport, I feel lucky to have some degree of hearing ability. Though not a simple task, I can generally navigate the system calmly and without needing to mention my hearing loss.

The one time that I did request special assistance, was when travelling with my boyfriend. This was more for research purposes than necessity. I was intrigued to see what type of support would be provided, and thought that perhaps this could be a good option for me when travelling alone. When booking my flight, I informed the airline of my hearing loss. Upon our arrival in Spain, we were met at the door of the plane by an airport assistant, with a wheelchair. He checked my name on a list on his tablet, and after witnessing me walk out of the plane unaided, asked me whether I needed wheelchair assistance. I was tempted to sit in the chair and get him to wheel me as fast as he could out of there. Instead, I signed my name in an electronic document, and his job was done.

I am aware that some airports now have a lanyard system to alert airport staff that the wearer has a hidden disability. It is not necessary for the wearer to formally declare their disability, and the airport staff can easily identify travellers that may require some extra help or attention. I haven’t yet used one of these lanyards, but think it is a great idea. And, for making airports more widely accessible, it’s definitely a step in the right direction.

But, my request to all airport staff, especially those who work in the security belt area, is simple: Please Stop Shouting. It can cause a lot of stress, especially for people with hearing loss, and isn’t helpful in aiding our understanding. Try speaking clearly and calmly instead. I understand you have an important job to do, and that you are probably tired, patience-drained, and may have been treated with disrespect by some members of the public. But, surely everyone, on first encounter, (whether they are wearing a lanyard or not) deserves to be treated gently and with respect.

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog!

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No End to the Record

At night-time, it loves the limelight, gobbling it up with glee. The more I focus on it, the more layers of noise I discover.

To mark the end of Tinnitus Week, I am sharing a post I wrote nearly two years ago. At the time, I was struggling to sleep due to my tinnitus. One night, when I was feeling particularly frustrated from lack of sleep and at my failed attempts to ignore the unwanted sounds, I decided instead, to give my attention to my tinnitus and really focus on the types of noises I could hear. I hoped that if I could make peace with the different elements of my tinnitus, I could learn to accept its intrusion on my life and start to manage it more successively.

The more I listened, the more diverse the sounds became. I started to make notes of what I could hear, which culminated in this blog post:

“I Know a Song That’ll Get on Your Nerves, Get on Your Nerves, Get on Your Nerves…”

Have you ever had a song stuck in your head? – An unwanted earworm that keeps playing over and over? A catchy piece of music that continually repeats through your mind, long after it has finished playing? This is similar to how I would describe my tinnitus. But instead of the notion of the song, there is actual ‘noise’, and the music never stops playing. There is no end to the record.

Tinnitus is defined as the perception of noise or ringing in the ears or head. The noise is not from an external source and can manifest itself in many forms. The varying sounds have been described as whistling, whirring, clicking, screeching, hissing, ringing, buzzing, pulsing, whooshing, or even musical. Tinnitus is a symptom of an underlying condition such as hearing loss, ear injury or circulation problems. From the moment I lost the hearing in my left ear, I simultaneously gained these unwanted sounds. My life became noisier.

My tinnitus feeds off salt and sugar, caffeine and alcohol, and feasts on a lack of sleep. Exposure to loud noise makes my tinnitus worse; giving it energy, enabling it to accelerate or become louder, and more prominent. Sometimes it is so loud that it is difficult to hear or concentrate on ‘real’ sounds. Sometimes it steals my attention from conversation. My tinnitus seems to be related to the pressure I feel in my ears and head. Louder or faster tinnitus means more pressure, sometimes culminating in a pain that feels like the inside of my ear is being stretched to full capacity; to the point of something bursting.

For some people, their tinnitus comes and goes, and for others, it is constant, chronic and persistent. Mine is ever-present. It will often fade into the background of my days; everyday noises will usually mask it, forcing it away from my attention. Yet, there is the cruelty of finding a peaceful moment or going for a walk in the countryside, and realizing the tinnitus has no ‘real’ background noise to overcome. It bounds into the foreground, onto the stage for full attention.

At night-time, there are no ‘real’ sounds to mask it. At night-time, it loves the limelight; gobbling it up with glee. The more I focus on it, the more layers of noise I discover. The foundation layer is the sensation of being underwater. I am under the sea, swimming deeper and deeper; water whooshing past my ears. With more focus, electronic-sounding agonized moans begin to emerge. A violin enters the stage; playing a continuous high-pitched and out of tune note that wavers painfully up and down in tone. The sound of an old copper kettle materializes, boiling with the shrill continuous whistle; demanding to be taken off the heat. Occasionally there is a piercing spark of noise; like the sound you’d expect your finger to make if you were turning something magically to ice. Sometimes the moans sound like melancholy singing. A penetrating fog horn begins to sound. A burst of crackling radio static joins the chorus, as the knob of an analogue-radio is turned; seeking out a resonating frequency and occasionally skipping past the notion of a word or a piece of music. I make pictures with my mind. I form images around the sounds. The more I focus, the more elaborate the scenes become. Wailing prisoners bound and shackled, all in a row, somewhere in the distance. Someone is trying to scream but is not able to make the desired sound, just a sharp continuous squeal. There is someone drying their hair in another room…

… When I stop feeding it my attention, it’s back to swimming underwater.

My tinnitus is like being in an argument I don’t want to be part of. I am engaged in a duel I didn’t sign up for. At times it can be torture. I am always fighting. I stay busy. I take my mind off it. I surround myself with everyday sounds.

I find myself observing people on the street, on the Metro, in bars, restaurants and parks. I wonder whether they too have these unwanted noises. Are they too trying to ignore the record that won’t stop playing?

I choose to ignore my tinnitus with as little effort as possible. Since the more effort used, the more attention it receives, and then it starts to win the battle. It’s a paradox I must fight. I wish for the noises to stop. I dream of relishing a quiet moment, but I can’t remember silence.

Please Sign the Petition for More Tinnitus Research!

Give People With Tinnitus the Hope for a Cure!

This week is Tinnitus Week.

One in eight people in the UK has tinnitus and for some, the condition can be completely life-changing. Studies have found that people with tinnitus score significantly higher on the depression and anxiety scale and lower on self-esteem and well-being.

Here I am, talking about the effects tinnitus has on my life:

The British Tinnitus Association are focussing heavily on the importance of moving forward with tinnitus research to ultimately find a cure. They have launched a petition pushing for the government to commit more funding to tinnitus research.

To show your support, please sign the petition for more research into finding a cure!

It’s so important to so many people: http://chng.it/HSMDM8Gv

You can also help reach more people by sharing this post and encouraging others to sign up too. Let’s make a real difference this #TinnitusWeek!

Thank you!

Working Together to Find a Cure for Tinnitus

British Tinnitus Association Manifesto Roundtables 2020, kindly hosted by Sir John Hayes MP.

A discussion by Carly Sygrove, creator of the My Hearing Loss Story blog, and advocate for people with hearing loss and tinnitus.

Tinnitus affects one in eight people in the UK, yet there is currently no cure.

My own tinnitus story began three and a half years ago when I experienced sudden hearing loss in my left ear. The moment I lost my hearing, I simultaneously gained the unwelcome whooshing and ringing sounds of tinnitus.

Following my hearing loss, I started to write a blog in order to share my experience of living without full sound and with other associated issues, including tinnitus. Through my blog, I have connected with people from all over the world whose lives have been affected by hearing loss and related symptoms. Tinnitus is one of the most common reasons why people contact me to seek support. Living with such an intrusive, yet invisible condition can be extremely difficult, and for some it is debilitating.

Although there are management techniques and devices that can mask the noises of tinnitus, there is nothing that can actually eliminate it. Knowing you have a condition for which there is no cure can be a tremendous mental weight to bear.

Tinnitus Research: How Can We Move Forward to Find a Cure for Tinnitus?

As part of the preparations for Tinnitus Week (3rd-9th February 2020), I was invited by the British Tinnitus Association (BTA) to attend a roundtable event at the House of Commons.

I would be representing people with tinnitus and joining researchers, other people with tinnitus, politicians, public health institutions and research funders, to discuss how we can progress the search for a tinnitus cure.

The Roundtable Event – House of Commons, Thursday 16th January 2020

Tinnitus roundtable

The event consisted of guests at two parallel tables, discussing how to move forward with tinnitus research.

Bringing together participants from a wide spectrum of backgrounds and specialisms encouraged an active and productive discussion. There was a focus on both the technical aspects of developing a cure and the personal opinions of those who are living with the condition.

The Technical Aspects of Finding a Cure

Although the participants in the discussion at our table were from a variety of backgrounds and with different associations with tinnitus, we all agreed that a tinnitus cure means silence.

Listening to the views and priorities of those involved in research, I learnt so much about the technical challenges of finding a cure. There are a number of issues which can impede the progress of research, and

there are matters to be considered before progressing studies further. Some of the topics discussed are outlined below:

The Importance of Research Into the Subtyping of Tinnitus

There isn’t just one type of tinnitus, in fact, there are many different forms of the condition.

Tinnitus may occur as a consequence of excessive noise exposure or be caused by disorders which affect the brain’s auditory function. Some types are related to the sensory system and others are a result of muscle contractions. There are also subtypes of the condition such as musical and pulsatile tinnitus. More focus needs to be placed on further identification of tinnitus subtypes in order to facilitate more targeted research.

Co-founder of Tinnitus Rooms support group, Louise Hatch stated, “We need funding and research into subtypes of tinnitus – it needs serious attention in its own right.”

Difficulty Measuring the Effects of Tinnitus

Currently, there is no objective way to diagnose or measure the effects of tinnitus.

The effects of tinnitus are subjective and hence hard to measure. For some people, the symptoms of tinnitus may not affect their daily lives and others it can have a huge impact. This doesn’t necessarily mean however, that one patient’s tinnitus is more severe. Some people are able to manage tinnitus more successfully than others.

The severity of tinnitus for patients may also fluctuate due to other factors, such as tiredness, weather changes and mindset. Since the effects of tinnitus are hard to measure, it is difficult to compare results in studies and for this reason, efforts to make advancements towards finding a cure are hindered.

The Pursuit of Identifying Biomarkers for Tinnitus

At present, a biomarker for tinnitus has not yet been determined.

A tinnitus biomarker is a characteristic identified in blood or the body that provides a measurable indicator of the presence of the condition.

The presence of a biomarker would be physiological evidence that a patient has tinnitus. If researchers are able to understand the mechanism of tinnitus, then they will be able to measure changes or progression of the condition, and the effectiveness of treatments can be evaluated objectively.

The Need for a Tinnitus Database

Dr Charles Large (CEO, Autifony Therapeutics), highlighted the benefits of creating a national tinnitus database with regards to moving forward with research:

“Absence of a UK-wide register of tinnitus means patients are being missed. Research trials would be the first to benefit but more importantly, it would benefit the whole tinnitus community.”

The Nature of a Cure

It is not yet known what form a cure will take. Tinnitus researcher, Dr Will Sedley, explained that to find a cure, researchers need to understand every level of interaction between the brain and ear, with regards to the condition. They need to discover a way to teach the brain to distinguish between real sounds and tinnitus and to filter out the latter.

The cure could take the form of a pharmaceutical drug or perhaps a further-developed type of sound-based therapy. We just don’t know yet.

More Tinnitus Awareness Amongst the Medical Community

Dr Will Sedley stressed the need to make tinnitus a more attractive area of research to medical students. He stated that “This is one of the most unsolved medical problems”, yet he doesn’t remember tinnitus ever being mentioned in medical school, or any question referring to it in exams.

Where to Allocate Funding?

If the government provides more funding to tinnitus research, it will need to be decided where the money will be allocated.

Tinnitus is not an illness in itself but rather is a symptom of a pre-existing condition, such as hearing loss, stress, inner ear disorders or migraine. Since there are various potential causes of tinnitus, do we put money into restricted tinnitus research or use it to fund other groups of research with a focus on illnesses where tinnitus may occur as a consequence?

By funding other areas of research, there is a possibility that a cure for tinnitus could be found as a result of curing an underlying condition.

What People With Tinnitus Want to See

Before the event, I spoke to some of my blog contacts, and for an opinion, much closer to home, I also contacted my dad, whose life has recently become affected by tinnitus.

Detailed below are some of the hopes people who are living with tinnitus have for future research, which largely coincide with the opinions of those at the event, who work within the area of tinnitus support:

More Support From GPs

A large number of my contacts expressed a desire for more help from the medical community for people with the condition. Some, including my dad, had experienced discouraging consultations with their doctors and were simply told to “get used to it”. Many people hadn’t been offered advice or support on how to manage tinnitus nor had they been referred to sources of emotional support. Perhaps successful guidance from GPs begins with specific tinnitus-management training?

During the discussion, Megan Gill (Tinnitus Hub support forum representative) emphasised how “Patients want to be heard and have a voice in research.” She spoke about the desire patients have to be listened to, and to be part of the journey of rehabilitation and eventually a cure.

Tinnitus Awareness and the Effect on Mental Health

Megan stressed the need for more awareness of the potential impact of tinnitus on mental health.

According to a survey carried out by Tinnitus Hub, 64% of tinnitus patients reported that the condition had caused them mental health issues, with stress, anxiety and depression being the most prevalent.

On this theme, a large number of my contacts emphasised the importance of having the hope of a future cure.

Of course, whilst a cure does not currently exist, acceptance of the condition is key in moving forward and it is important for those affected to find a way of managing their symptoms to improve their quality of life. Yet, the reassurance that researchers are working to find a cure, can give those affected a level of mental comfort.

More awareness of the interrelation between tinnitus and mental health issues could have a positive effect on fundraising efforts and more researchers may be likely to embrace the challenge of finding a cure.

Prevention Measures

Speaking as a voice for musicians and DJs, Anne Savage highlighted the importance of promoting tinnitus prevention measures. As a Plug’em ambassador, Anne is passionate about reducing the stigma of wearing earplugs to protect hearing in environments with potentially dangerous volume levels such as gigs, festivals and clubs. In the discussion, it was suggested that perhaps there is a need for more strict decibel restrictions in the UK.

As a former teacher, I wonder whether this is something that needs to be addressed in schools, starting with a focus on volume levels in the classroom?

My Thoughts

Personally, I hope for more international interest in tinnitus research. I feel that this is a worldwide condition which needs a worldwide solution. I’d love to see collaboration between research institutions around the world where key focus areas of study are agreed.

Surely, creating strong communication links in the research community and sharing outcomes and discoveries, could help drive research forward with more dynamism and impact.

Moving Forward Towards “a World Where No One Suffers From Tinnitus”

To summarise, the main priorities from the discussion were as follows:

Create a UK tinnitus registry
Focus research on identifying biomarkers for tinnitus
Raise awareness of the effect of tinnitus on mental health
Promote prevention measures, e.g. more strict decibel restrictions in the UK

The British Tinnitus Association will combine the recommendations from both discussions and present them to government ministers in order to move forward the search for a tinnitus cure.

The Secretary of State for Health and Social Care, Matt Hancock, has already taken an interest in raising the profile of tinnitus research on the political agenda. “I am very happy to look specifically at the case for increased research funding into tinnitus and to work with [Sir John Hayes] on it,” he responded, following the roundtable event.

It was an honour to take part in such a lively and positive discussion. I feel that bringing this level of awareness to tinnitus is a very positive step towards finding a cure. And, for me, I have a little more hope that I will one day be able to enjoy silence again.

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog!

Eva’s Hearing Loss Story

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation…What happened? I wasn’t perfect, but I was pretty damn good!’

Following my hearing loss in 2016, I started writing a blog as a way of documenting my thoughts, feelings and observations. It is through my blog that I have connected with many people who have experienced different forms of hearing loss, all with their unique stories.

Hearing loss can present many challenges, both practical and emotional, to the lives of those affected. When we exchange hearing loss stories, we have the opportunity to increase our understanding of the difficulties that living without full sound can bring, and we can use this knowledge, and the advice of others, to develop our coping mechanisms. I have realised the comfort in sharing experiences. Sharing my story has helped me to feel part of a supportive community and I feel less alone in my hearing loss journey.

Let’s Meet Eva

I first ‘met’ Eva in April 2019, when she contacted me through my blog, two months after experiencing a profound sudden hearing loss in her left ear, very similar to mine. She also has tinnitus and some slight balance issues, which accompany her hearing loss.

Eva is 45 and is from Southern California. She enjoys hiking in the mountains and the beautiful Californian terrain, playing golf, yoga, attending her local book club meetings, and spending time with her friends and family. She was working as a director in the business office at a local college but recently stepped down from this demanding position as a result of her sudden hearing loss. She is now in a less demanding role at the college and continues to work full-time.

She has a positive approach to dealing with her single-sided deafness and is working to recover her life since her loss. Eva and I have talked a lot about hearing loss grief, something which we both identify strongly with. She recently remarked, “I hope someday soon my usual cheery self will be my default setting again and not something I have to work so hard to achieve each day. I’m getting there and have made tons of progress.” She recently acquired a CROS hearing aid and she is currently trialling it to see if it will provide her with adequate support. She says, “The jury is still out”.

Eva and I have formed an online friendship, based on regular communication through Email. She kindly allowed me to interview her, during which she gave a very honest account of her hearing loss story…

Eva, has your life changed since your hearing loss?

The first six months following my hearing loss were significantly difficult, but things are starting to settle now that it has been 9 months.

At first, I could not sleep. I do not know if it was tinnitus or anxiety, or my body freaking out due to not receiving input from one ear. I would wake up in a severe panic any time I’d fall asleep for even just a few minutes. I am sleeping much better now, my body has adjusted. It is still not as good as it was before the hearing loss (I was a great sleeper, could sleep 8 or more hours straight if you’d let me), but I am getting at least 4 hours per night each night.

I also had a lot of sensitivity to loud noise, so it was difficult to be in many situations, such as restaurants, church, family parties, etc. I kept pushing myself to be in noisy situations and I find that I am more used to it now, it doesn’t bother me very much anymore. Loud noises would sound so terrible as they entered my damaged ear and would cause awful noises, it still does but I am more used to it now.

Of course, my limited hearing makes certain situations difficult. I have to lip read a lot more, I’m getting better at it. I am very aware of where I am in a room to ensure I will be able to hear. Sometimes people call out to me or approach me from my deaf side, and I have no idea they are there. I am often surprised to see someone standing next to me, sometimes they are talking to me and I have no idea.

Finally, I feel this has greatly affected my relationships with those closest to me as it is difficult for them to understand why I am down. I try really hard not to be down, but it is difficult and I think they may become tired of my negative energy. I know I will come out of this, but it is taking time and I cannot force it. I need time to grieve.

What have you found the most challenging about living with hearing loss?

Strangely, the hearing loss itself is not the most challenging. It is challenging, but my one good ear provides sufficient hearing to function in most situations. The more challenging part is the psychological and emotional part. The grief, the depression, the anxiety, the inability to sleep, the toll it has taken on my relationships, the blow to my self-confidence.

What advice would you give to someone who has recently experienced a sudden hearing loss?

I believe meditation, taking walks, and positive journaling has helped me tremendously to cope with the psychological turmoil that comes with sudden hearing loss. I think any person, healthy or not, should start practicing meditation, so that when something terrible strikes (and it will!), you have built experience meditating. Same goes for taking walks and positive journaling. It is very difficult to get used to your entire world sounding different, the tinnitus, etc. and you can never escape it, so keeping your mind calm and focusing on other things (by meditating, journaling, taking walks) will help get you through.

Eva also gives encouragement to others and shares her advice in my Facebook support group. In a recent post, she shared her positivity with the other group members in an inspirational comment:

‘… a few months back, I decided that I was going to do whatever I wanted to do, without hesitation. I was going to end the negative self-talk and the fear and just get out there and do my best. I got on an airplane, I swam underwater, I went dancing at posh night clubs, I went to a concert, I went hiking on jagged trails, all things I was either terrified to try (irrational fear that my ear would hurt or blow up or something crazy) or things that I thought would be overly difficult where I’d look like a fool. What happened? I wasn’t perfect, but I was pretty damn good and I felt proud and more encouraged each time. I haven’t stopped since and I find that the more I subject myself to it, the better I get at being in crazy, noisy, rocky places where I thought I’d never be able to function again.’

I really admire Eva’s optimism and motivation in moving forward with her life following her hearing loss. Thank you, Eva, for sharing your story.

This article was recently published by Hearing Link.