“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 metal 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 a 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.

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Working with my one ear

I used to almost consider my hearing as a super strength; it was a sense I relied heavily on as a teacher of young children. In fact, a couple of years ago I underwent a hearing test, as part of a staff medical assessment, and the audiologist commented on how remarkable it was that I was able to hear even the quietest of tones above the background noise of the children in the corridor. As a teacher I was able to identify the owner of any voice in the classroom, without having to turn and see their face. I was able to pinpoint the precise location of where a voice was coming from, and could swiftly turn around to face the person who had made the tiniest of noises, or uttered a sound in the quietest of voices; with an ease of motion gained from years of experience teaching infants. Only after my hearing loss did I realize how much confidence I placed in this ability. My super power was now gone, and I was learning to survive in a classroom, and a school setting, without it.

I had resigned from my job as a teacher of 4 and 5 year olds. Working full time in a classroom wasn’t an option for me anymore, due to the amount of noise exposure I would have. My new job was working as a learning assistant. My new job involved some time supporting a teacher in the classroom; some time covering teachers when they would be in meetings or planning lessons; and some time working with individuals and small groups, in a quiet environment, outside of the main classroom.

With only one hearing ear, I am unable to locate sounds. If a child speaks to me in a classroom, and they are not standing in an obvious position, I will have no idea where the child is situated, and will spend some moments looking around trying to determine their position. Similarly, if I am sitting in front of a class, and a child shouts something out, I cannot rely on my listening skills to identify the culprit, and will instead search for a guilty-looking face. With time I have discovered that, when a child makes an inappropriate noise, if I say, “Who was that?” in a stern voice, without moving to look, the other children will immediately turn or point to the perpetrator!

There is the difficulty of being unable to focus on spoken word over background noise. If a child tries to speak to me in the classroom when the rest of the children are busy carrying out activities, I have to make sure they are on my hearing side, and very close to my ear, in order to be able to hear what they are saying. There have been times where I am concentrating on something a child is saying to me, on my hearing side, when all of a sudden I have felt a vibration or a whisper of a breath in my deaf ear, and I’ve turned around, only to be startled by a child speaking intently into this ear!

Working in an Infant school is a demanding role for someone with a sensitivity to noise. The children are young, and so naturally are often noisy. As well as the obvious loudness of children’s voices in the classrooms and the corridors, there are also some difficult situations I can’t always predict or plan for. There is the painfully-loud noise of a fire alarm drill; the loudness of music played in assemblies and music lessons; the intense volume of other staff member’s voices in staff meeting debates that often overlap with each other, becoming unintelligible to me.

There is my lunchroom nemesis. The school dining hall is a space with an absence of soft furnishings. There are neither carpets nor curtains to absorb the abundance of sound produced in this room. Inside this space are long tables, and glass windows that frame the full length of one side of the room. The opposite side of the room opens onto to a small utility area, featuring a large-scale kitchen sink. This area is used for rinsing the children’s lunch trays with a high-powered rinsing tap. During lunchtimes this room is an abundance of energy. The long tables brim with children. The room fills with chattering voices, the clinking of cutlery, the banging of plastic trays against bins to rid them of any leftover food, and the sound of jets of water spraying into a metallic sink. The sounds seem to bounce around the room from the glass windows, to the hard floor, and to the metallic kitchen area; rarely being absorbed, and mixing with the new sounds being made every moment. I have been using my time spent in this room as part of my sound retraining therapy; getting used to everyday sounds I find challenging, and to help my brain tolerate noises that at present seem too harsh or too loud. As well as battling with the discomfort of the noise in this room, I also have the issue of socializing. Lunch time is often the only time members of staff have, in the school day, to have a quick chat. In this room, if someone sits next to me on my hearing side, I can usually conduct a conversation with a little effort; making sure my ear is close to the person speaking. However, if someone comes to sit next to me on my deaf side, I won’t hear them approach. This means I continuously check this space to see if anyone has sat down. If there is already someone sitting there, I find myself constantly observing their face to determine whether or not they are talking to me. I often find myself eating my lunch quickly to avoid the noise exposure and the communication difficulties. I know this isn’t helpful in moving forward in dealing with my nemesis, but sometimes, when lunchtime arrives, I’m so tired and it’s hard to concentrate. The other scenario is that I make a big effort to start and hold a conversation with the person sitting on my deaf side. This means I have to turn my body around to face them, to have any chance of hearing their dialogue. This makes eating my lunch a difficult task, and hence means more time spent in this room; my nemesis.

Then there was The Cough. I was in a classroom, covering for a teacher, and every few seconds one of the girls would burst into a deep chesty cough. I encouraged her to drink water whenever she felt the need to, but this didn’t seem to provide her with any relief. Over the course of the hour during which I was in the class, I spent my time dueling with The Cough. Every time I spoke, there was a cough interruption. In the presence of The Cough, it was as though any audio in the room at that moment was being censored. Just like when watching something on television when there is a bleep censor used as the replacement of a profanity, or for when classified information is used; this was the consequence of The Cough. So, whilst sitting in front of the class, trying to teach, every few moments, I was for a few seconds unable to hear anything other than The Cough. I was also unable to gauge whether the volume of my voice was at an audible level. Similarly, I was unsure of how much to raise my voice for it to be heard over The Cough, without raising it so much as to be shouting. Then when a child spoke to me in the moment of The Cough, I had completely lost the battle.

There was an awkward moment at the end of a school day. I was again, in a class covering for a teacher. It was the end of the school day and I was reading a chapter from a story to the children. Within moments of beginning to read, a parent came to the door. She opened the door, and she wanted to speak to me. The door was at the opposite end of the room from where I was sitting with the children. I walked across the room to the door, and predictability the children burst into conversation. I walked towards the lady who was standing at the door. And so, the rumbling of chattering continued. The parent at the door was someone I was unfamiliar with. She began to speak to me. I couldn’t hear her. I moved my right ear towards her, closer to her mouth, to give me a chance at gaining some understanding of what she was saying. Well, I was momentarily perplexed by what happened next. The lady turned to face me. She put her hands on my shoulders, and proceeded to kiss me on both of my cheeks! She had unknowingly mistaken my advancing towards her in order to hear her, as an attempt to initiate this customary Spanish greeting! I observed the tradition, in a brief confused state, and uttered a nervous laugh. I then continued to stand ‘too close’ to her as she proceeded to speak to me. I’m sure she felt the awkwardness, but I’m also very sure she had no idea of the reason for it.

Although the majority of my colleagues are aware of my hearing loss, people often seem to forget. Words are habitually spoken to me in passing in a busy corridor, or across a noisy classroom. I consider these moments a complement. I must not be visibly struggling.

Above all, I am tired. I am working in the hearing world, yet this is a world that I don’t entirely fit into any more. The level of concentration and energy needed to focus on spoken word all day is exhausting. Working in the hearing world, I am always visually scanning my environment in order to identify the potential movement of speaking lips. With the exhaustion comes, at times, almost deafening levels of tinnitus. With tiredness and noise, the pressure in my ears builds, like a balloon skin being pulled tight; a balloon full of air pushing against the inside of my ear and spilling out into my head, causing my ears to hurt, and the hum of a daily headache.

Every day is a challenge. Working life is still really difficult and I often feel completely drained. But I am glad to be filling my days. I am happy to be making progress in getting some ‘normality’ back into my life.

One year on… My thoughts on my sudden hearing loss

It is one year since the day in the auditorium when I suddenly lost the hearing in my left ear. It has been a year spent attending appointments with various specialists, a year of being observed and tested, and a year of taking different medicines and trying hearing aids. I spent almost a year without working; trudging slowly through my days, with the feeling of frustration weighing heavily down on me. A year has passed and there have been no answers, and no improvement in my ability to hear. It has been a year that has damaged my confidence. A year that has chipped away at me; with every hurdle and setback diminishing my character. Yet it has also been a year of building myself up; grasping at ways to find strength through my adversity.

It still feels very recent. I still wake up every morning to the realization that I can no longer hear in my left ear. A part of me continues to cling on to the tiniest of hopes that one day I will miraculously wake up with the full ability to hear; that my hearing will re-emerge as quickly and as spontaneously as it disappeared. This hope is an inherent part of me that I’m unable to control or even want to suppress. Yet, this doesn’t mean I haven’t accepted the reality of my situation.

In addition to becoming deaf in my left ear, I have been left with: tinnitus, a sensitivity to loud noises, the inability to identify where sounds are coming from, and difficulty hearing in background noise. Yet worst of all, there is a relentless feeling of pressure I feel in both ears, though more so in my left. It is these other issues that are proving to be more difficult to manage than the hearing loss itself.

Living with hearing loss and associated symptoms poses everyday challenges. Even though I have had no actual improvement in my symptoms, I have a better understanding of my hearing loss. I am improving my coping techniques every day; achieving small triumphs that feel like fairy steps of success. Notably, the discomfort I used to feel when this first happened, when going outside my apartment into a world of noise, has now become a habitual sensation. Although it is very present, it is something I rarely think about; an unpleasantness that has now been forced to the background of my focus. Loud noises are still painful. The sound of emergency vehicle sirens, motorbike exhaust pipes, and the clattering of dishes, all cause me physical pain deep inside my ears. But I have also discovered some noises that bring me comfort. The sound of a gentle river, the wind brushing past tree branches, and rustling leaves force my mind from giving attention to any unwelcome sounds of tinnitus. I have found that wearing headphones helps to block out the noise of the Metro and noise associated with trains and public transport. For short periods of time I am now able to listen to my IPod through my headphones, and can enjoy music and listen to storytelling podcasts; this is something I thought I would no longer be able to find pleasure in, due to my sensitivity to noise. I have developed my understanding of practices that can affect my condition. I now realise that if I drink alcohol, eat something with a high salt content, or if I don’t sleep well, my tinnitus will be stronger. The presence of loud tinnitus and tiredness, in turn, means I will find it difficult to concentrate well on hearing tasks. Socializing can be demanding amongst background noise. In restaurants and bars I have learnt to sit in a corner, or with my deaf ear against a wall and my hearing ear facing the person I am speaking to, in order to have some chance at hearing them in conversation. I have learnt that it is only possible to concentrate on listening to one person at a time. I have also learnt that with large groups of people and circular tables comes a lot of frustration!

It has been a year of firsts. There was my first run since my hearing loss, where I started to feel so much stronger, and more ‘myself’. There was my first train journey, where I watched the beautiful countryside through the train windows, with the sun on my face, and when I felt so happy to be listening to music through my headphones; thankful for the hearing I had left. There was my first time in a restaurant since my hearing loss, which taught me so much about the importance of selecting a table wisely.

It has been a year of being proactive; writing articles for hearing loss websites, and getting involved in fundraising campaigns for deaf charities.

It has been a year of ‘silly deaf moments’ and mishearing words: sitting with my boyfriend on a terrace and mishearing him say the word ‘parmesan’, and instead hearing ‘lederhosen’, and wondering why my boyfriend would want such a thing sprinkled on spaghetti!

It has been a year of feeling vulnerable. When I’m on my own in everyday places and situations, such as the supermarket or walking down the street, I worry about strangers talking to me, and not being able to hear them, or even worse failing to acknowledge them; if they have addressed me on my deaf side. I worry about cars pulling out of parking spaces, and not registering them until they are moving towards to me. I worry about crossing the road and hearing the siren of an ambulance, and not knowing which direction to move out of the way.

It has been a year of frustration. I am frustrated in train stations and airports where I can’t hear the Public Address systems clearly. I become frustrated with bars that play their music loud, or that are bustling with chatter too loud for me to tolerate. I am frustrated at people who speak in mumbled words, or who turn their head away from me during conversation; meaning I am unable to hear parts of what has been said. I am frustrated at feeling like a burden with every time I have to ask someone to repeat themselves. I am sad that I am now unable to continue my career as a teacher in a lively classroom. Yet I am proud of myself for returning to work in a less demanding role, which in actuality is one of the most challenging things I have ever done. I still feel upset with myself when I struggle in conversation. It’s tiring trying to listen to conversation or to communicate for long periods of time. It’s tiring to be around noise. I am tired a lot of the time from trying to listen. I feel frustration in learning simple things again, such as keeping my balance whilst walking downhill. I feel frustration at there being so many questions that doctors don’t know the answers to. What caused my hearing loss? Is this going to happen to my right ear as well? Why do I often feel dizzy when I’m walking, yet rarely when I am running? Why does shopping centre lighting, stormy weather, and crowds of people, cause me to feel dizzy?

It has been a difficult year also for the people closest to me. I know it is hard for people to know what to say to comfort someone who is not ‘getting better’. I know it is difficult to know how to help. My friends and family have lived through this with me and have shown me overwhelming support. But, it is my boyfriend who has lived the experience closest to mine, and who has felt not only the frustration that I have, but has also learnt with me how to deal with my hearing loss. The unfaltering support, patience and care he has shown me, and continues to do so has undoubtedly given me strength to deal with the new challenges I now face.

This year has been difficult. Yet this year has had a huge impact on my personality, where my priorities now lie, and the way I view my life. I am stronger as a result of this year. It is also because of this year that I have realized the enjoyment I have in communicating through writing. By recording my experiences and thoughts in my blog, I have made sense of my feelings and gained strength. I hope also to have given others an insight into my world, and some of the difficulties experienced by someone with hearing loss.  Writing is a pleasure; one which I can thank that day in the auditorium for the moment the world to the left of me abruptly fell into silence.

Testing and Hope

Less than a week following my consultation with the new specialist, I went to meet with a private hearing healthcare professional to discuss hearing aid options. When I’d made my appointment I had asked if there was anyone who spoke English. My hearing loss in itself has brought communication difficulties. Trying to manage it and to make advances with consultations in a second language has added extra challenge; an extra layer to tackle and deal with. The receptionist said she only spoke a little English. I wasn’t sure if I had managed to convey my question clearly as to whether there was an audiologist who I could consult with in English; not whether she, the receptionist, spoke English. Of course I am trying to learn Spanish, and always try to communicate with people in shops, restaurants and cafes in Spanish. But when discussing something as important as my health, and what could possibly also be a big investment (hearing aids can be very expensive), I wanted to make sure I had optimum chance of comprehension and the ability to ask questions and to communicate my needs and feelings successfully.

I arrived alone and very nervous. Not only was I anxious at the prospect of yet again trying to convey, in Spanish, the fact that I had ‘suddenly’ lost my hearing in my left ear, but also because this was the first step to a possible big change in the way I live my life. I was admitting to myself, and making peace with the fact, that I wasn’t going to be able to hear again in my left ear. I hoped to gain some support. I hoped to gain some closure. I was also putting myself again, in the vulnerable position to perhaps be told that there would be nothing I could try that could help.

I sat in the waiting room, for about 5 minutes, and then was greeted by a friendly looking Spanish woman in a white jacket who said ‘hello’ to me in unconfident-sounding English. A man followed the woman, and he shook my hand and greeted me with a much more comfortable version of ‘hello’.

I was led directly into a hearing testing booth. The woman who I assumed was the audiologist, went through the door to the other side of the booth, and sat opposite me; observing me through a transparent screen. The man came into the room with me and began to explain the procedure in English. I was incredibly relieved – this man was here solely to translate for me. He explained that they were going to do different hearing tests to see if there was any type of hearing device that could help me. The man then joined the woman on the other side of the glass. Next proceeded a series of different tests.

I carried out the usual Pure Tone Audiometry hearing test; raising my hand every time I heard the ‘beep’ sound in my hearing ear. The man gave me a thumbs-up gesture after my first test – the testing of my right ear. Then they tested the left (deaf) ear. As usual they had to play the sound of wind into my good ear, whilst testing the deaf ear. My head was conducting the sound. My good ear could hear the sound that was being played into my bad ear, when there was sound played at loud levels.  The wind noise was to distract my good ear from hearing the sound and confusing the results of my left ear. As usual I could only hear a few beeps. They then carried out the Bone Conduction test. This tests how well sounds transmitted through the bone are heard. As usual, I could not hear anything for this test, in my left ear. Next they did a Loudness Discomfort test. For this test, the audiologist played increasingly loud sounds into my ear, and I had to say when the sound was uncomfortable. I was glad they were carrying out this test; one which I hadn’t previously done. I had been struggling with everyday sounds, and my tolerance of noise, especially when loud, was noticeably lower than before I lost my hearing. I guess it is important for audiologists to perform this test when deciding on appropriate hearing aids: since hearing aids amplify sound, the audiologists need to ensure this sound is within the comfortable range for their customers. Next they performed a Word Recognition test which tested my ability to correctly repeat back words at a comfortable loudness level. The audiologist said words and I had to repeat them. The words were in Spanish, and I joked that it was like a Spanish language test. They assured me jokingly that I wouldn’t be marked on pronunciation. I carried out the test, in a language that I am still learning; I struggled with the rolling of my r’s for some of the words.  My right ear seemed to cope with this test with ease. My left ear struggled. All I heard in my left ear were some distorted noises; high pitched and mostly two syllables.  I couldn’t relate the noises to letter sounds or words. I couldn’t verbally make the strange noises I was hearing. I just shook my head after each distorted word. Then the audiologist changed a setting, and I could hear every word she said in my left ear! It was an extremely painful level of loudness and seemed high pitched. But I could hear, and this was amazing! I was hearing words! Brimming with emotion, I repeated back, in my best Spanish, the words she was saying. The audiologist and translator spoke to me through the glass about how the audible sound in my left ear felt. I told them that it was wonderful to be able to hear, but that it was very uncomfortable.

Next we went into a room with a desk, and the audiologist and translator spoke to me about what they thought would be my best option. The audiologist told me that the only option she thought that would work for me would be a Signia Siemans Pure Contra Lateral Routing of Signal (CROS) hearing aid.  I was told that as there was only the tiniest bit of hearing in my left ear, they couldn’t promise it would be a great help. But they said they might be able to get me 30 percent hearing…maybe 40 percent. The main benefit would be that I would have more chance of being able to hear better in background noise. Using this technology, a hearing aid-like device on my deaf side would use its microphone to pick up sound from that side and send it to another instrument at the better ear; wirelessly via bluetooth. The sound would then be introduced into the good ear. Wow! It sounded perfect! They showed me an app I could get on my phone that I could use to change the settings. If I was in a restaurant I could make the microphone focus on where the people were sitting, e.g. if they were positioned in front of me, I could press the corresponding areas of a diagram on my phone, and the microphone would focus on these areas. There was a setting for music. If I wanted to go to a live music show, I could press a button and it would pick up the music in surround sound. I told them I would like to try the device, and they asked me what colour I’d like. I hadn’t even thought of this! I asked the audiologists opinion, and she suggested one that matched my hair colour.

I had moulds taken of my ear and was given an appointment for a week later, where they would fit the hearing aid and show me how it works. I would be trying to use it for an hour or so each day, and then increase the time every day, and would have regular updates with the audiologist.

Finally, some hope.

 

A consultation with the new specialist

Nearly six months after my sudden hearing loss I was in my Spanish hospital with my boyfriend, yet again for another consultation.

When I first entered the consultation room, I was dismayed to see yet another Ears Nose and Throat (ENT) specialist whom I hadn’t previously met. It was a specialist who was not aware of my story and who I skeptically assumed was going to ask me to repeat my story yet again, and then tell me that he was sorry, but due to lack of research on my condition, he would be unable to offer me any further help and that he would see me again in three months to see if there were any changes.

Before meeting with the new specialist I had carried out the usual hearing tests. As usual I was told that nothing had improved. The specialist had a friendly and sensitive manner. He asked me about how my hearing loss had occurred and whether I had previously had any ear related problems. Then he looked at my hospital notes and told me that my MRI scan was normal. This was probably about the third time I’d been told this information. He said there was some ‘shading’ in an area of the image, but I didn’t hear the rest of what he said, and he didn’t seem to speak about it with any importance. Then he looked at my results from my Brainstem Auditory Evoked Potentials test. He proceeded to explain to me what the results showed. This was the first time the results had been discussed with me in any more detail than just telling me that they showed the same as my hearing test – that I can’t hear in my left ear. He drew a diagram of the ear and showed how each peak on the graph produced from the test, related to different parts of my ear. The results showed that sounds weren’t being heard because sound wasn’t successfully reaching my ‘caracol’. In Spanish they call the spiral shaped part of the inner ear known as the cochlea the ‘caracol’; which translates as snail shell. So for some unknown reason, sounds weren’t able to be interpreted by way of my cochlea, and hence the relevant signals needed to hear, weren’t being sent to my brain.

The new specialist read my notes from the ENT doctor with whom I had consulted a month earlier in London. He didn’t agree with the diagnosis of Cochlear Hydrops as being the reason for my hearing loss. He explained to me that this is usually a condition that is not continuous and comes in episodes. Although I have the symptoms, mine are continuous, not sporadic. I continuously have pressure in my left ear. I am continuously deaf in this ear. My hearing doesn’t fluctuate. He told me however, that ultimately the diagnosis isn’t that relevant, as the main point of importance was now finding ways to help make things more bearable for me.

The new specialist then surprised me by asking me about how I was coping. I told him that the insistent pressure in my left ear was very uncomfortable. I told him that going outside into the noises of the city was also very uncomfortable and a habitual challenge for me. He commented in English and said that, “This kind of thing can make you crazy.” He told me and my boyfriend that I ‘have to be strong’. I told him that I know my situation could make someone crazy. I told him that I know I need to be strong. I told him though, in a friendly tone; appreciative of his even mentioning of these issues. This was the first time any hospital specialist had shown any understanding or even alluded to the difficulties I was facing with the everyday. He asked me about my work. I told him I was not currently at work due to my hearing loss. He asked me why. I told him that I was a teacher and that I worked with very young children. I explained the difficulties I had when I tried to return immediately to the classroom, when I first lost my hearing. I asked him whether he thought I would be able to go back to my teaching job. He said he thought I could try. He told me that everything will take time. I needed to adjust. He said that I am still relatively in the early stages of learning how to live with unilateral hearing. He stressed the importance of trying to return to my normal life and routine. When I told him how young the children were that I teach, he added, “It will be very difficult for you though.”

Then the new specialist widened the scope of his investigations. He asked questions about my kidney. I only have one kidney on my right side. He told me that hearing problems and kidney issues can be directly related, as the kidneys regulate the fluid in the body. My hearing loss was possibly an issue with the fluid in my inner ear. Often people with fluid problems in their ears are given diuretics to force the kidneys to excrete more salt in the urine. He was keen to try this measure, as the diuretics could possibly help with my ear pressure. However, he wanted to check first that it was safe to prescribe me diuretics. So he made an appointment for me to have a consultation with a nephrologist (kidney specialist).

He also asked about my jaw. Oh my goodness, I couldn’t believe it! From the very first moment I entered the hospital, at the start of my story, I had been asking the hospital doctors if the problems I have with my jaw could be contributing to the problem in my ear. I had been constantly told that there was ‘probably’ not a connection. This time I hadn’t even mentioned my jaw. The new specialist had asked me the question! He said that my jaw problems could also be a cause of pressure in my head and my ear, and hence could be making my condition worse. So he made an appointment for me to see a maxillofacial doctor (specialist of the head, neck, face and jaw).

He suggested I go to a private audiologist to discuss hearing aid options and ways of helping with my discomfort. He said that there were four options that could be worth trying:

  1. Wear a normal hearing aid in my deaf ear to try and amplify the sound to a level that might help to give me some hearing. It probably wouldn’t be a useful level of hearing, but it might help with the feeling of disorientation, tinnitus and pressure in my ear.
  2. If the first option didn’t work, then I could try a Contralateral Routing Of Signals (CROS) hearing aid. This type of hearing aid would take sound from the deaf ear and transmit it to the ear with better hearing. This could help me hear better in background noise.
  3. If the CROS hearing aid didn’t work, then there was an aid called a Bone Anchored Hearing Aid (BAHA). Having a BAHA would involve an operation where they attach a hearing aid on to a bone near the ear and it would pick up sound vibrations – this would obviously be a more invasive measure.
  4. There was also a device that could ‘mask’ tinnitus sounds in my deaf ear. This would play sound, or noises, or music, into the bad ear. Although I wouldn’t be able to hear the sounds, it could help with my tinnitus.

It was so refreshing to speak with someone who was curious about the other issues affecting my ear, and who seemed to genuinely want to help. Maybe this is the same treatment I would have received from any of the other ENT specialists at this point in my story; now that immediate treatment had been administered; now that we had waited for six months; and now that acoustic neuroma,  stroke, or an autoimmune disease had been discounted. Even so, this specialist had shown a deep understanding of the day-to-day issues I was facing. He knew about and acknowledged that I would be having some difficult days. This comforted me. I wasn’t being weak or over-accentuating my difficulties.  What I was going through was hard. It was supposed to be hard. I was dealing with it. I was having good days and difficult days. This was normal. Also, he explained things in so much detail, and had given us suggestions for further actions. I was incredibly grateful to have consulted with him. I now had a new plan with many elements, and I would be seeing him again in a month to discuss any new findings.

This time when leaving the hospital I didn’t cry. I walked out of the hospital with my boyfriend, breathed the fresh air, and was full of positivity.

Warning signs?

Following my consultation in London, I took the vasodilators as instructed. These however, made me feel even more light-headed and weak. All my blood tests came back normal with no deficiencies and no evidence of an autoimmune disease.

There is relatively little information on the internet about Cochlear Hydrops; also known as Endolymphatic Hydrops, which is a secondary form of the more documented Meniere’s Disease. I was reading everything I could find about this condition, and was particularly interested in other people’s experiences of it. Often experiences were negative, and the occasional positive ones were stories of how people were noticing a reduction of pressure in their ears, or experiencing less attacks of vertigo (in relation to Meniere’s disease) by cutting out caffeine, alcohol and salt from their diets.

I decided to try eliminating alcohol and caffeine from my diet, and to eat as little salt as possible for a month. After the month I began to introduce things back into my diet to see if they had any effect on the pressure in my ears or the tinnitus. I realized that wine made my tinnitus more loud and lively. However, I was willing to deal with the occasional bout of enraged tinnitus, as I enjoy a glass of wine at the weekends, and especially with a nice meal. My boyfriend reminded me about getting the balance right. OK, I could cut out all these things from my diet, but it there were no real benefits, then why do it? Nobody had given me a definite diagnosis of the cause of my hearing loss or of the Hydrops; if it was in fact Hydrops that I had. Even though the specialist had diagnosed Hydrops, there is no actual test for it: it is a diagnosis based on my symptoms and history that was supported by the results of the electrocochleography (ECoG) test. If I did have Cochlear Hydrops, the specialist had told me that the cause was unknown. I was willing to try things to see if they helped, but I had to be mindful of making sure I wasn’t cutting things out of my diet just for the sake of it. My quality of life was also important. I enjoy coffee on a Sunday morning. I enjoy salty Marmite on toast at the weekend, and I enjoy a glass of wine with spaghetti and pizza. I was already miserable from my sudden hearing loss, why dampen my spirits any more?

As the days and weeks passed, following the ‘diagnosis’ of Cochlear Hydrops, I started to remember events in my life where I had experienced ‘attacks’ of dizziness and tinnitus and fullness in my ears; the main symptoms of this illness. These memories spilled steadily into my thoughts.

There was the memory of collapsing on a flight to Rome, nearly 8 years ago, when I was traveling there with my sister. I had felt a little dizzy and sick, and as I stood up to go to the toilet, my body felt heavy and my legs felt weak, and I fell down to the floor. A few minutes later I found myself sitting at the front of the plane fastened in tightly with a seat belt across both sides of my body; like a child’s car seat. I had vomited, and my sister was with me looking concerned. I felt fine a few hours later, and I put this down to tiredness and the fact that I sometimes have travel sickness. Maybe this had been a sign of Cochlear Hydrops?

There was a time about 10 years ago when I was in a greeting card shop in England. I was on my way out of the shop when my body suddenly started to become really hot. My eyes couldn’t focus and my ears felt stuffy, and I collapsed to the floor. After what I assumed was only a few seconds later, I was able to get up and walk out of the shop and go home. I had consulted my doctor at the time about this, and she had done some blood tests to check my iron levels, but the test results were normal. Maybe this had been a Hydrops attack?

There was even a time around 15 years ago I was walking to university, where I remember feeling overwhelmed by dizziness. My vision was blurring and my hearing became muffled. I fell into a parked car. Also at university, many times sitting in lectures I remember feeling dizzy. It was as though the floor was constantly moving upwards in a curve towards me.  I was having difficulties sleeping at the time, and spoke to my doctor about these things, and assumed these episodes were due to tiredness. Maybe they weren’t due to tiredness; maybe these were the early warning sign of Hydrops?

During the Christmas holidays, 6 years ago, I had 2 ‘attacks’ very close to each other: this was around the same time when my tinnitus (that lasted 3 years) first began. I was extremely stressed in my job and put everything down to stress. I actually thought I was having migraines. I was staying with my sister and her boyfriend, and I was about to make them a lasagna. I reached for a knife and a chopping board, and then all of a sudden everything started to spin and I felt like I was going to vomit. I had to go immediately to lie down. A week or so, just before or just after this attack (I can’t remember), I was staying at my parents’ house, when I experienced the most scary of all ‘attacks’.  I went to the kitchen to make some beans on toast for my sister. Again, I was standing at the kitchen worktop, when I sneezed. At the same time, I felt a twinge in my neck, and then the scariest sensation I have ever felt. I had an awful feeling of dizziness and sickness that came on immediately. My body felt heavy and numb and I felt like things were beyond my reach of control. I vomited and had to go to bed. I slept and slept. Were these Hydrops attacks?

More immediately, last winter, every time I went for a walk in the city, I would feel dizzy and tired and weak.

Was it possible that these were all signs of Cochlear Hydrops?

The specialist in London had said that, the fact that I had tinnitus for three years, was probably a sign of the presence of Cochlear Hydrops. Doctors and physiotherapists at the time had told me that it was a Pulsatile Tinnitus; probably due to an ongoing problem I have with my neck. In actuality, the tinnitus subsided suddenly one day when I had returned home from a run, and stretched my neck really far to the right (the opposite direction of ear with the tinnitus – my now deaf ear). Hence, a problem with my neck, being the cause of my tinnitus, seemed very plausible.

Maybe these were all warning signs? Maybe my body had been trying to warn me for years that I would finally experience the sudden hearing loss in my left ear? But maybe not. I still didn’t have any definite information regarding a cause of my hearing loss. I wanted to keep trying to find the reason for my hearing loss. For peace of mind, if there was something I could do to prevent any further damage happening, in order to protect my right ear – my only hearing ear – then I wanted to know what I needed to do.

A second opinion (and lots of medical terminology)

It was early in the new year, and my boyfriend and I had traveled to London for a second opinion about my condition. We arrived at the Ears Nose and Throat clinic, and were asked to complete a basic information form and to wait in the waiting room. The waiting room was enormous. There were plush sofas around the perimeter, and an elaborately decorated Christmas tree that dominated one side of the room. At the end of the room on the left, was a drinks machine that served all types of teas and coffees; all free of charge. We had done our research to find a specialist with lots of experience and with expertise in some of the issues I had been having. We were hoping to gain some more information and some understanding regarding my hearing loss.

When we first met the specialist, my immediate thought was that he looked older than the photo on the clinic’s web-page. He was smartly dressed; wearing a dark suit jacket, white shirt and a tie. His hair was dark with a generous scattering of flicks of silvery grey; additions to his jet black hair that had not been captured in his professional photo. As we entered the consultation room, he greeted us by shaking our hands. He dropped his pen as he walked towards his desk, and stooped down to pick it up. He had the slightly awkward air of a genius. He immediately starting asking questions and scribbling down information on his notepad. He was eager to see some previous medical notes, and grabbed at what I had brought. He continued to scribble down information. Whilst writing, he kept looking up at my face, and commented more than once telling me that he thought I was very pale. He had the nature of an accomplished professional, who seemed to be trying to find an answer to my problem, at an accelerating pace.

He started with some unusual tests. He asked me to stand up and I accompanied him to the corner of the room. He commented on my size saying, ‘there wasn’t much of me’. I was asked to walk in a straight line; stand still and balance; and to close my eye, put my hands together in front of me and march on the spot. When he asked me to stop marching, I opened my eyes and found that I was no longer looking at the same part of the wall as when I had started marching; I had rotated about 45 degrees. My boyfriend found this amusing. This test showed that I was somewhat off-balance. He also asked me to sit down and look him in the eyes, as he flung me from side to side. He asked me to lie down on a chair in a small room that was attached to the main consultation room, and again I had to look at the bridge of his nose as he flung me from side to side. This left me quite dizzy, and when he let go of me I swayed slightly to the left. Next I went to have some hearing tests. These were the usual tests that I had done so many times, and also tests of the middle ear, including a tympanometry and Eustachian tube function test.

After a short wait, we went back into the consultation room. The doctor told me directly, that I had lost 90 percent of the hearing in my left ear. He told me that there was also a small hearing loss in my right ear. There was also evidence of significant inefficient Eustachian tubal function in both ears; marked on the right side.  I had never been told so clearly the extent of my hearing loss, although I was very aware that it was severe. Nobody had told me that I also had a hearing loss in my right ear, and this came as a shock to me. He said that as the hearing loss in my left ear was so severe, it would be unlikely that a hearing aid would help me. This was disheartening. The specialists in Spain had given me some hope regarding some kind of aid. I appreciated this specialist’s candidness, even if it was difficult to receive this information. He then commented again about the paleness of my skin. He recommended that I get my Vitamin D levels checked, along with some other blood tests. I said ‘yes’ to all of his suggestions. He also suggested that I carry out a speech discrimination test of my (good) right ear, to see how well I understand speech.

I had my blood taken. Soon after, I was sitting back in the hearing test room, listening to an audio of someone saying words at different volumes. All I had to do what say what I could hear. It reminded me of a test teachers might give to young children or to children who are learning English as a second language. I found this test OK, until the quiet level, where I ended up saying word endings or just a single letter-sound that I could distinguish in the words. Everything happened at such a fast pace.

Then the specialist told me that he recommended me to have an Electrocochleography (ECoG) test of my (good) right ear. This test measures the electrical potentials generated in the cochlea—a part of the inner ear—in response to sound stimulation. He wanted to see if the test would show any evidence for the reason of the small loss of hearing I had in this ear. He stressed the importance of taking care of my right ear – my only hearing ear. So he squeezed anesthetic cream into my ear and we went downstairs to the waiting room for about half an hour while my ear became numb. Yet again, I had electrode pads stuck to my head. He rubbed my forehead harshly with the sandpaper, and was surprised at the sensitivity of my skin. I then lay back on the chair and I was attached by the electrode pads to the computer. An electrode was also fed deep into my good ear. Yet again I had the same feeling as when I had the steroid injections: the scratchy discomfort, deep in my ear and in the back of my throat. Yet again, a series of clicks were played into my ear.

The specialist explained the results of this test. He told me I had a form of a condition called endolymphatic hydrops in my (good) right ear. Endolymphatic hydrops (also known as Cochlear hydrops) is thought to be an early form of Ménière’s disease. Basically, it is a problem with the fluid in the inner ear. This diagnosis explained the pressure and feeling of fullness in my ears; the tinnitus; the hearing loss; and dizziness I had been experiencing. The specialist thought it was likely that the hydrops was also the underlying pathology affecting my left ear six years ago, when I had begun to experience tinnitus that had lasted three years. He felt I had probably had Cochlear hydrops in my left ear all these years, and it had subsequently resulted in my sudden sensorineural hearing loss.

After five hours of tests and consultations, we had a lot more information and a bit of a plan. I was to wait for the blood test results. I was going to take some more strong antiviral medication for 5 days, in case of the hearing loss being a result of a virus. After completing the anti-viral medication I was then to start inner ear vasodilator treatment by taking a medicine called Serc 16mg, for 4 weeks, to see if this had any effect on reducing the pressure in my ears.