tinnitus – My Hearing Loss Story

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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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.

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.

CROSSSD Study – You Can Help with Vital Research!

I recently came across an interesting research project, whilst browsing on Twitter. The purpose of the study was to help develop the research of treatments of single-sided deafness (SSD), making it easier and quicker to find out which treatments work best and why.

As someone with SSD, who has been unsuccessful in finding an aidto help overcome the difficulties imposed by this type of hearing loss – namely challenges in localising sounds and understanding speech in noise – I was keen to do whatever I could to help support this research project.

The study is part of a PhD being undertaken by the audiologist and researcher, Roulla Katiri, and is supported by the National Institute for Health Research (NIHR), Nottingham Hearing Biomedical Research Centre (BRC). I wasn’t sure whether I would be able to participate since I am currently living in Spain and the project is based in the UK. So, I sent a message to Roulla to see if there was anything I could do to help. Roulla’s reply was simple and clear – since I have been diagnosed with SSD over 12 months ago and have trialled a hearing aid, I was a perfect candidate to take part in the consensus.

Here’s a little bit more about the study…

The purpose of the study is to develop a common set of ‘outcomes’ to help researchers decide whether a treatment works. In the field of treating SSD, ‘outcomes’ are the things that should be measured when deciding if a hearing aid or an auditory implant is effective.

Examples of ‘outcomes’ are:

The ability to localise sounds
The impact of SSD on quality of life
The ability to hear in noisy places such as restaurants

Different research studies often measure different outcomes, meaning it can be difficult to compare or combine measurements. This makes it hard to identify which treatment works best. If all future studies measure the same common set of ‘outcomes’, research can be moved forward faster.

This is all explained really nicely in this short video (2:19 running time):

The information gathered from this study will help others with SSD; and audiologists, like Roulla, to be able to recommend the best treatment for SSD, when considering the individual requirements of their patients.

My experience completing the study…

As a participant, I was provided with very clear information about the purpose of the study, how to complete it, and how my information would be used.

The survey is comprised of tables of outcome statements like the one shown below:

All I had to do was score the outcomes as to how important I felt they were to measure, for SSD treatments according to my own experience. To do this I was required to select a score on a 1 – 9 importance scale, by simply clicking on the relevant part of the table.

Before completing the study I was a little concerned. This is a cause I am very passionate about, and I was worried about making the wrong selections. However, I soon realised that there couldn’t be an incorrect answer – my opinions were all that mattered. I was also slightly worried I might change my mind about some of my scores, after submitting the survey. But, should this be the case, there was going be a second round of the study, where I would have the opportunity to view a summary of the other participants’ scores for each outcome. If I wished to change any of my scores, after reconsidering my initial decision, I would be able to do so in Round Two. I really couldn’t go wrong!

The phrasing of the outcomes was easy to understand and the survey took approximately half an hour to an hour to complete. If I felt particularly strongly about any of the outcomes, I also had the opportunity to add a comment. If I had needed to take a break, there was the option to save my progress and to continue when I had time.

Who can take part?

You can help if you are:

A member of the public with severe-profound SSD for over 12 months
A healthcare professional with experience of SSD, such as:
- Audiologists
- ENT doctors
- Funders, relevant charities workers e.g. Ménière’s Society, researchers around the world who work in the field of SSD

If you don’t satisfy any of the above criteria, you can still help by increasing awareness of the CROSSSD study. You can share this blog post, or the relevant information, on your social media platforms. Or, you can simply mention the study to friends or family members who have SSD, or who know someone who does.

It is an international study. The more diverse the applicants, the better the overall representation of people will be – from all walks of life, all ages, and from around the world. If the survey is completed by people from a wide variety of different backgrounds, this will give researchers a better understanding of the key outcomes that will help provide effective treatment for the greatest amount of people.

A final note…

It’s so great that this research is being conducted and I am really happy to be able to help contribute to this study and to give my opinion on what really matters regarding treatment for SSD.

The unique challenges that come with living with SSD are not limited to hearing difficulties. People with SSD may also be living with other related issues such as tinnitus, sound sensitivity and fatigue. Those affected may experience psychological and social issues due to difficulty following conversation, which can make communication at social events exhausting, causing stress, anxiety, and reduced self-esteem. Hearing difficulties and mental health issues can also put stress on professional and personal relationships. And, possibly the most difficult issue is that SSD is invisible; people with SSD may feel alone and isolated in their daily struggles.

Please, take a moment to share this post or the information below. And, if you satisfy the criteria to participate, please take the small amount of time to complete the study. It’s quick. It’s simple. Your help could vastly improve the lives of people with single-sided-deafness.

For more information, visit the following website: www.nottingham.ac.uk/go/CROSSSD

Or contact Roulla to register your interest: roulla.katiri@nottingham.ac.uk

The study will close beginning of November 2019.

Hearing Me – A Documentary for the BBC World Service – Now Available to Listen to!

It’s been two and a half years since I suddenly lost the hearing in my left ear, and today I am celebrating all I’ve achieved since my hearing loss. Thanks to the BBC World Service, I am very happy to share this glimpse into my life without full sound.

Hearing Me is now live to listen to! Please note, a transcript is also available through the same link – just scroll down the page to download:

https://www.bbc.co.uk/programmes/w3csynqv

Another big thank you to Chelsea Dickenson (Audio Always) who spent 4 days following me around Madrid with a microphone, and who showed me just how much energy and attention goes into making a radio documentary.

Please take a few minutes to listen and share. Thank you 🙂

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Hearing Me – A Documentary for the BBC World Service

BBC World Service

Something exciting happened last month!

I was involved in making a radio documentary for the BBC World Service, which describes some of my experiences of living with hearing loss and tinnitus, and also reminds us not to take our hearing for granted.

I feel so lucky to have had the opportunity to take part in this, and to be able to share my story.

Hearing Me, is now up on the BBC World Service’s schedule: https://www.bbc.co.uk/programmes/w3csynqv

The documentary will be played several times so that people in different time zones can listen to it. You can find these by clicking ‘more’ below the programme information.

Afterwards, it will be available online through the same link as above, and it will also be part of their ‘The Documentary’ podcast series: https://www.bbc.co.uk/programmes/p02nq0lx/episodes/downloads

Please note there will a transcript to enable listeners to follow the dialogue.

A huge thank you to Chelsea Dickenson and Audio Always for creating such a personal and creative piece, I absolutely love it, and hope my readers/listeners (!) all do too!