Brad’s Hearing Loss Story

She came round the corner just in time to watch me vomit on the side of the street. I think that was the moment she internalised what was happening.

For 10 years, I have been an avid listener of storytelling podcasts such as The Moth and Risk!. There is something soothing and therapeutic about listening to the voice of someone telling a true story and in learning about extraordinary things that have happened in their lives. The experiences of others, whether key life events or comical anecdotes, not only have the potential to inspire and shock the audience but can help people overcome difficult times; by finding relatable elements in these personal stories, the listener and the storyteller can share the experience. 

When I learnt that New York-based storyteller, writer and performer, Brad Lawrence, like me has hearing loss in his left ear and also Ménière’s disease (a disorder that affects the inner ear, causing vertigo and hearing loss), I was keen to know more about his story. 

Brad kindly agreed to an interview via Skype where he spoke openly about how hearing loss and Ménière’s disease has impacted on his life. During the conversation, he shared his bright outlook through amusing accounts and also revealed his greatest hearing loss fear.

Continue reading “Brad’s Hearing Loss Story”

And…The Results Are in

It was results day. I was sitting on a hard plastic chair in the health centre waiting-area, muddling through the Spanish sentences in my head that I wanted to make sure I remembered to say to the specialist. There was an echoey buzz of noise from the conversation of other patients and the rattle of metal trolleys; full of medical folders, being transported to the consultation rooms. I tried to focus on breathing deeply to calm myself. Waiting rooms, the act of waiting, speaking in Spanish about health topics, and the worry of not understanding or hearing the specialist, are all things that make me feel nervous. 

After a short time, I was greeted with a “hello” by a doctor who I immediately recognized from a previous appointment. I smiled and replied “hello”, instantly feeling much of the tension in my body melt away at the realization that we would be communicating in English.

She asked me how I was doing and I told her that I was OK, although I still felt dizzy every day. I explained how I believed that the dizziness was influenced by many things –  crowds of people, tiredness, loud noises, salty foods, changes in weather etc. She said that all these things can cause dizziness, though doctors are not always quite sure of the reasons. Next, she asked me whether I’d had any more vertigo attacks since the last time I had consulted with her, and I answered, telling her I hadn’t.

She then looked at the results of my vestibular tests. “This is good,” she said. She told me that the results showed that my ear was working well to keep me balanced.  I asked her if she meant my right (hearing) ear. She replied with regard to both my ears, saying that my balance system was working to a satisfactory degree. She explained that she was reading some numerical results and that the graphical representations of these results were not currently available – there had been a problem with the printer part of the test-machine when I had taken the test. She said she would need to see the graphs in order to have more understanding of how my vestibular system was functioning. She had a surprisingly positive tone to her voice; something I wasn’t accustomed to hearing in a consultation room.

She conjected that perhaps the diagnoses of endolymphatic hydrops or Meniere’s disease were incorrect, and suggested an alternative reason for my dizziness and unsteadiness being vestibular migraines. I paused for a moment to consider this. I had witnessed my mum experiencing symptoms of traditional migraines for most of her life; something which still continues to affect her almost daily. I wasn’t however, particularly informed about migraine due to inner ear disorders. During these few seconds of contemplation, the specialist had already started to question her new hypothesized diagnosis. She said that although the test results noted a good result, it was probably more likely that I have endolymphatic hydrops or the early stages of Meniere’s disease. She backed this theory up with the evidence that I have pressure in my ear and the fact that consuming salty food also makes me noticeably dizzier and exacerbates the feeling of ear pressure. I had become accustomed to this kind of fluctuation of opinion concerning my diagnosis. Inner ear vestibular disorders are difficult to diagnose, and I was aware that my symptoms could be associated with more than one condition. She said that regardless of the diagnosis, she was happy because the results were good and showed that my brain and ears were working together to keep me balanced.

She then asked me about my experience with vestibular rehabilitation. I told her that I hadn’t noticed a difference in my everyday life, as I still felt dizzy in many situations. She responded unexpectedly by telling me that I had made a lot of improvement during the sessions and that I had almost doubled my test scores, following the treatment. I was happy about this as I had worked hard, and I secretly congratulated myself on my efforts. It seemed that although I was managing my balance more successfully, this didn’t equate to feeling more stable. I was still regularly feeling off-balance and dizzy, yet this was part of my condition. The therapy couldn’t cure these factors, it could only help me manage them more effectively.

I would consult again with the specialist in a couple of months. She reminded me to go immediately to the emergency department of the hospital, should I have any issues, however small, regarding my ears. She also told me to make sure I get plenty of rest, continue to drink lots of water, and keep my salt intake to a minimum. She wrote down the phone number of her receptionists and told me that I could phone them and ask to see her if I ever had any issues with my ears.

I left feeling comforted by the quality of care I had received, and confident that I was doing the best I could to support myself with this condition, whatever it may be.

Follow the Yellow Brick Game

After waiting a few minutes while the results of my initial posturography test were recorded I was asked to play some more ‘games’. I assumed this was the beginning of the vestibular rehabilitation. I was hoping this therapy would help train my balance system to manage the feelings of dizziness I was experiencing everyday.

This time there were only three bricks on the screen, arranged in a V-shape. Again, one square at a time changed from red to yellow, and I had to make my stickman move into the square that was, at that moment, yellow. The movements were simpler than they had been in the test, and the position of the yellow square appeared predictably; moving around the V-shape in a clockwise sequence. The ‘game’ was repeated, this time with the yellow bricks appearing in an anticlockwise sequence. Next, the metal plate I was standing on was programmed to be more sensitive, and the ‘game’ was played again, this time with lots of swaying, trying to keep my balance whilst controlling my stickman.   Then, all these ‘games’ were repeated but with the bricks forming an inverted V shape (like the capital Greek letter Lambda). When the plate was moving with increased sensitivity, I felt a little sick, and my stickman soared clumsily across the screen; dipping in and out of the target brick, like a staggering drunk trying to walk along a straight line.

I was asked to exit the booth and the nurse took the harness off me. My legs felt weak and wobbly and she held my shoulders to support me.  I put on my boots and was told to sit back in a chair so that I was comfortable. The nurse turned off the lights and the room relaxed into darkness; apart from a slither of natural light peeking from behind the window blind.

Across the room, opposite where I was sitting, was a thin tube about a meter long, and supported in a vertical position by a clamp.  Inside was a small red LED light which moved slowly up and down the length of the tube. I was instructed to follow the movement of the light with my eyes. I’m not sure how long I watched the light; the passing of time became difficult to judge whilst concentrating. It was perhaps only a few minutes, and my eyes started to merge the image of the red light together with its black surroundings, losing visual focus. Next, the light clamp was loosened and the tube was rotated into a horizontal position. I watched again, this time, as the red light moved from side to side.

Next, the nurse turned on what looked like a children’s bedside lamp. It was a black, short cylinder-shape. The face of the cylinder that went all around the lamp was decorated with a rubrics cube-type design. Small square lights of red, yellow, blue and green were arranged in two rows of repeated patterns. When the lamp was switched on it started to revolve slowly and I was asked to look at each green square light. My eyes focused up and down as the lamp turned, following the positions of the green squares. Then I focused on the other colours one by one; observing around 12 repetitions of each colour.

Finally, I was shown some exercises which I would need to carry out twice daily. I stood, with a chair in front of me as support, and looked at myself in the mirror opposite. The nurse stood behind me so I could copy her actions, from watching her reflection, as she demonstrated the exercises. The exercises focused on moving my head in different directions first with my eyes open and later with my eyes closed.

For two weeks I completed a half-hour session every day; harnessed into the booth, followed by a 15-minute calm-down period watching the lights. I started to learn more about the ‘game’ and the rehabilitation process. I realized there were different difficulty levels for the yellow brick ‘games’. The metal base, on which I stood, could be programmed to be different levels of sensitivity so that a higher sensitivity setting meant that a small shift of weight could make the cabin move quickly. Sometimes I would start on 40% difficulty and work my way to 70% during a session. Sometimes the red bricks were further apart, and there were varying amounts of bricks. Some of the ‘games’ involved my stickman moving back and forth between just 2 bricks, and other times there would be 8 bricks, all separated. Each brick remained yellow for 10 seconds and each level lasted for 5 minutes. After two weeks of intensive therapy I was assessed again; completing a test similar to the initial platform posturography.

I would return in a couple of weeks for one final session, followed by a consultation with a specialist to discuss the progress I had made and also to talk about the results of my vestibular tests.

Human Pong

I arrived at the health centre on a Monday morning to begin a two-week course of vestibular rehabilitation. I wasn’t really sure what to expect and hadn’t done any research about the procedure online, before turning up to my appointment. I was feeling optimistic, as I had read stories about others who had benefitted from this type of therapy. Before starting the therapy, I would be doing a Computerized Dynamic Platform Posturography test. This test can be used to assess and evaluate the relationship between the three parts of the balance system; the inner ear, vision, and the sensors in the muscles and joints.

A nurse greeted me, and I followed her into a small room. She asked me to remove my boots and then inquired about my name, age, height, and whether I had been in the health centre previously.

Next, I was asked to stand up and the nurse began to attach a safety harness to me. I put my arms through the main part of the harness, like a waistcoat. She fastened it at the front and then secured another part between my legs; pulling the loose end of the strap tightly. I was then asked to walk into an open-backed grey booth. The nurse clipped thick metal clasps – similar to the kind rock climbers’ use – through the two loops of the harness, close to each of my shoulders; connecting them to two straps that were hanging from a horizontal pole at the top of the booth. She then helped me to position my feet, slightly apart, on the metal plate at the base of the booth. I stood, wearing only socks on my feet, my body strapped into place inside the booth; quickly realising the coldness of the metal plate, and feeling slightly vulnerable, yet also intrigued as to what was going to happen next.

I was facing the inside wall of the booth, and in front of my eyes was a blank screen, slightly smaller than an A4 piece of paper. My first task was to focus on the screen with my eyes open, keeping my balance. I assumed a computer was recording any shift in my body weight as I endeavoured to remain steady. Next, I had to close my eyes. I could feel my body sway as I went into darkness. I then had to open my eyes again, and within a moment I felt my surroundings move. The metal platform and the booth walls moved slightly and I was asked to maintain my balance. I was aware that the nurse was standing behind me during the entire procedure, and in addition to the harness that was fastened securely, I knew her hands were ready to support me if I fell. I then had to close my eyes again whilst the plate or the booth, or maybe both (I wasn’t sure) was moving. It was difficult to keep my balance and I stumbled slightly. Finally, I was asked to open my eyes again whilst the plate was moving. On opening my eyes I felt a wave of dizziness, but nothing too severe.

Next, the screen in front of me was switched on and a stickman, enclosed in a line square, appeared on a blue background. The nurse explained that I was the stick man; when I moved, so did the little man on the screen! The movement seemed to be controlled by my leaning and the pressure my feet were applying to the metal plate. There were numerous ‘jeugos’ – she described the tests as ‘games’. The concepts were simple, and the first ‘game’ resembled something very similar to a human version of the old Atari computer game, Pong. A circle – I imagined this as the ‘ball’ – moved predictably across the screen, back and forth between two vertical lines – the ‘players’. The aim of the ‘game’ was for me to follow the movement of the ‘ball’ with my stickman body. The ‘players’ unlike in the original Pong were stationary. I swayed from side to side on the metal platform, trying to keep on course with the ‘ball’. This was more difficult than I’d anticipated, and my stickman body flew around erratically for a few shots before I was able to control my movements and balance well enough to roughly follow the ‘gameplay’. Just as I thought I was getting the hang of it, the speed of the ‘ball’ increased so that it was being ‘hit’ between ‘players’ at a much faster pace. Again my stickman body was flinging itself all over the place, and I found it difficult to keep up with the ‘ball’. This Pong-like ‘game’ was repeated so that the ‘players’ changed positions and were represented as horizontal lines at the top and bottom of the screen with the ‘ball’ and me moving upwards and downwards with each shot. The final Pong ‘game’ was played whilst the platform made some movements which of course made it more challenging.

Pong

The final ‘game’ comprised of basic red and yellow-coloured squares that looked like representations of bricks. Eight squares were arranged in the centre of the screen, together forming a rough oval shape. All the squares started off as red, apart from one that was yellow. This square would remain yellow for 10 seconds before changing back to being red. The consecutive square in the oval shape would then turn yellow for 10 seconds before changing back to being red, and so on. The aim of this ‘game’ was to move around the oval shape, with my stickman body, to each consecutive yellow square. When the ‘game’ began, an off-balanced wobble of my legs caused the stickman to be launched again wildly across the screen, before I managed to take more control. The movement of the metal platform beneath my feet caused the sensation of being on a boat that was very sensitive to movement. The more I swayed towards the yellow squares, the more the surrounding booth moved, making me feel unbalanced; causing unsteady movements of my stickman. I played the ‘game’ to the best of my ability, though it was difficult to maintain position inside the squares, and my stickman swayed around the perimeters; dipping in and out of them. With some time, however, my confidence and ability increased and I started to feel competitive. The ‘game’ was repeated, with the yellow square moving around the oval shape in the opposite direction, and again with more sensitivity and movement from the foot-plate.

vestibualr rehabilitation screen

 

Once the ‘games’ were completed, the nurse printed some results. I saw some sets of bar graphs and values on the screen in front of me, but they weren’t discussed. I was told to stand still and wait a moment. I supposed these results would inform the doctor as to how well my balance system was functioning, enabling them to tailor the therapy to my needs.

New Year Tests

It was the first week in January and I was beginning the New Year with a visit to the hospital. Since my vertigo attack, and experiencing increased dizziness during the past few months, I had been referred to a Vestibular Audiologist to carry out some tests. The vestibular system is the inner ear balance mechanism, which works with our eyes and parts of our brain to stop objects blurring when the head moves. I was at the hospital to carry out some Vestibular Function Tests (VFTs) to determine the health of my inner ear balance system; in particular that of my right and only hearing ear. In preparation for the tests, I was told to eat breakfast 3 hours beforehand; to not wear makeup or face cream; and to refrain from consuming caffeine or alcohol for the 48 hours leading up to the tests.

The first test was called a Video Head Impulse Test (vHIT). A friendly-looking woman asked me to sit on a chair facing a wall. On the wall was a silver sticker that was the shape of a paint splodge. She fixed some goggles over my eyes, fiddling with an elasticated strap to make sure they were secured tightly; the plastic pressing into the skin around my eye sockets. She forced my right eye wide-open and trapped it in position with the goggles. She then sat to the left of me at a small desk with a computer. I began to realise that the goggles were making a high pitched noise that I could hear in my right ear. I wondered if they were making the same sound next to my deaf ear; undetected. I figured the glasses had a camera embedded inside them, and that the data would be sent to the computer and then interpreted through some software. I couldn’t look at the screen or what the woman was doing, as she told me to focus my vision on the paint splodge. I sat there for a while whilst I heard her gently tapping the computer keys.

After about 10 minutes she stood up and said something to me in Spanish that I didn’t quite hear nor understand. She held my head in her hands, and started to move it with small sudden motions. During this procedure, I had to continue to keep my focus on the splodge. She carried out this process in 4 short sessions, each one lasting approximately 5 minutes. My hair kept escaping from her grasp and individual strands fell randomly to my face. She kept moving them away and commented on how fine my hair was. After the third session, her phone rang and she had a chat with someone who I gathered, from a few moments of concentrating on her Spanish conversation, were family. It was still Christmastime and the feeling in the hospital was more relaxed than usual. Whilst she was speaking I took the opportunity to look at the computer screen. There was a close-up photo of one of my eyes, and two graphs that were being plotted with what I assume were the reactions of my eyes to each movement. One graph was plotted in a red curve, and the other in blue. I could see, at this moment, that my left side had received a ‘positive’ result and my right side a ‘negative’. I wasn’t sure what this meant, and the test wasn’t over yet. Once the test was finished I felt a little dizzy.

Next was the Caloric Stimulation procedure. I was asked to sit in a chair, similar to one you’d find in a dental clinic. The chair was reclined so that I was lying down and comfortable. Then she fixed another pair of goggles over my eyes. These were bigger than the previous, and pressed forcefully onto the bridge of my nose. The woman explained that the googles had cameras inside to film my eye movements. She then put covers over the lenses so that I lay in darkness. Next, she gently tucked what I assume was a towel, under my chin and around my shoulders. Then, what felt like a small bowl, was placed under my right ear. She informed me that she was going to put some water into my ear and that it was going to sound very loud. She instructed me to keep my eyes open once the water supply stopped. She was going to start by using cold water and would test my right (hearing) ear first. Well, I wasn’t really prepared for what happened next.

I had imagined that a small amount of water would be squirted into my ear; perhaps a syringe-full. First, I heard a mechanical-sounding Spanish voice, coming from a machine – I think it was stating the measurement of water or pressure that had been selected for the test. Then my ear was filled with a high-powered continuous stream of water. It sounded like a storm inside my head. The sensation of the water going in felt cold and as though I was having an intense ear-clean, though it wasn’t too uncomfortable. Once the water stopped flowing, I felt it start to drain out of my ear; trickling into the bowl. I forced my eyes wide open as I had been instructed, and then the dizziness began. The woman had left my side, and I assumed she was now at her computer checking the results. It felt like a mild attack of vertigo. I watched the blackness of the inside of the goggles swirl from one side to the other, and started to feel a little sick. I was aware that the woman was saying something to me, but with some water still in my ear, I was unable to hear her. When all the water had drained, I heard a small satisfying pop and I could hear again. I told her I felt a little sick and dizzy. Once she had the results she needed, she let me rest for a while with my eyes closed. Next, she performed the same routine on my deaf ear. This time the sound of the water entering my ears was silenced; a muffled gurgle. The dizziness following the water spray was slightly more intense, and again I was allowed to rest with my eyes closed, following the taking of results.

I hoped the test was over, but she informed me that she would now repeat the procedure on both ears; this time with hot water. The hot water was a little more uncomfortable than the cold had been, as it entered my ear. As soon as the water began to trickle out, an intense wave of dizziness overtook me. I tried to control my breathing. I started to sweat. I told her I felt really sick. I managed to control the dizziness and nausea, and was allowed to rest a little longer with my eyes closed. I was also instructed to keep my eyes closed as she performed the hot water test in my left (deaf) ear, but to open my eyes wide again once the water stopped. There was some discomfort as it streamed into my ear, accompanied by the subdued sound. I opened my eyes widely once the water pressure had stopped, and I was immediately hit by a surge of strong vertigo. I wanted to close my eyes. I wanted to sit up. I was told to keep my eyes open for a few more seconds whilst the results were being taken. I was sweating more. I became aware of my heart beating wildly in my chest. I focused on controlling my breath; breathing out deeply with my lips puckered tightly into a circle. I held onto the side of the chair to try and keep myself stable.

She rushed over to me and carefully brought the chair back up into a sitting position, and placed what looked like an adult nappy across my forearms and under my chin. She told me to breathe and relax. My stomach cramped as though I was going to vomit, and my head jerked forward. Nothing. I realised why it had been necessary to fast during the three hours before the test. My arms and fingers were tingly and weak; the feeling I used to get as a child from carsickness. I breathed in controlled breaths for some time, as the woman continued to do things at her computer. I started to feel better.

A familiar face appeared in the doorway – it was the specialist who I had consulted with when I first lost my hearing. She recognised me and asked me if I was OK, and she wished me a Happy New Year. The woman made me wait a little while longer after feeling better and then she gave me a sealed envelope, addressed to the ENT department, containing the test results. I would take these with me to my next consultation to discuss with a specialist.  I was then allowed to leave the room and go to my boyfriend who was waiting for me outside.

Dizzy Dollies

When I was a child, I used to play a game with my sister, called Dizzy Dollies. I don’t know if this was an actual game, or just something my mum thought up as a way of keeping us occupied. The game involved spinning around, usually on grass, with arms outstretched like birds. We’d spin; our arms feeling light from the rotational force, until the dizziness became too much for our brains and bodies to compete with, and we’d fall down with a joyful thud of giggles.

Since my hearing loss, that feeling of dizziness a few moments before falling is always with me; following me around like an unwanted shadow. I now have a sense of dizzy instability, much stronger and more frequent than before my recent vertigo attack. When I’m walking around my apartment, I feel OK. My brain is accustomed to navigating my body around the small enclosed space. However, when I go outside, my stabilisers are removed and my vulnerability is exposed to the vastness of my surroundings. The movement of people on the streets and the cars on the busy roads cause a rapid development of confusion in my balance, and in turn my ability to steer my body with composure is put to the test. When I’m in a crowd, or if I turn around and see someone standing close to me, I immediately feel off balance and the Dizzy Dolly feeling hits again. Every three or four steps I feel a heaviness building inside my head combining with the ever-present pressure in my ears. This weight causes a sensation of my head being forced downwards; a feeling that quickly spreads through my body. My legs become heavy, and the floor seems to lurch towards me. I am constantly trying to find my balance. Sometimes I feel nauseated. Other times I need to sit down to regain my balance. I feel dizzy if I look around too much or too quickly. Certain types of lighting also seem to affect my steadiness, especially in supermarkets or department stores. I’ve noticed some difficulty focusing my eyes now. Sometimes when I try to concentrate my sight on a small area, my focus drifts away and I have to keep forcing it back. I don’t feel comfortable walking close to people with walking sticks, pushchairs, prams, and small dogs, in the worry that I will lose my balance and fall on them.

For the past month, the only advice I have been given is to rest. And I have rested. Yet, if anything, the feeling of dizziness when I am outside seems to be worse than ever. It occurred to me that maybe resting could now hindering my progress.

Whilst searching on the internet for practical advice, I came across a blog entitled ‘Life with Sudden Sensorineural Hearing Loss’. It was written by a girl named Dana, who had experienced sudden hearing loss in the summer of 2007. In her post ‘Be Active’ Dana describes her return to college after losing the hearing in her left ear. She writes about the challenge of her ‘roller coaster’ bus commute, and the instability she felt when riding the escalator:

‘I made my way to the escalator, gripped the railing firmly, and focus my eyes on my feet to prevent losing my orientation on the long descent to the metro platformThe movement, the echoy noises in the metro, and a constant sense of chaos.’

These experiences were incredibly similar to mine. I felt some comfort in knowing that someone else had also undergone these challenges when travelling on public transport, following a hearing loss. Dana explains how her daily commute became easier during successive months. Then over Christmas, she worked from home and didn’t have to worry about her hearing and balance. When she returned to her classes in the New Year, she comments again on her commute:

 ‘The bus ride to the metro was just as terrifying as it has been my first week in September. All progress that I’d made on my balance was lost.’

Dana consulted with an audiologist who carried out extensive tests of her hearing, eyes and balance. She also listened to Dana’s story about how her balance had improved during the autumn, and after asking follow-up questions the audiologist gave her a simple instruction:

“You’re healthy but your balance is off. From here on out you need to retrain your brain constantly where your new balance is. And to do that, you must simply stay active. That’s your prescription – to stay active.”

Dana summarizes that ‘During my several sedentary weeks in December, my brain had completely forgotten all of the lessons I had taught it.’   

Maybe this is what has happened to me. I have been told to rest, and resting has enabled me to feel stable in the small surroundings of my apartment. But by resting every day, and spending a lot of time indoors, my brain hasn’t needed to work to constantly recalibrate my balance. Perhaps I need to retrain my brain to manage my stability in more challenging situations. Maybe I need to become accustomed to being outside again; to feel more confident travelling on the Metro, riding escalators, and walking on busy streets. Maybe the best thing I can do to help shake this Dizzy Dolly feeling is to ‘stay active’.

In the lack of any better suggestions, this is the prescription I am choosing to fill. I have had enough of resting. I am an active person. I enjoy walking and running and being outside. I have rested enough. This condition is unpredictable, and I can’t spend my days waiting to feel better. I certainly don’t want to be always waiting for the next vertigo attack. I need to focus on continuing with my life as best as possible. I will endeavour to ‘stay active’ and attempt to lose this unwelcome shadow of dizziness.

Attack

It was a Monday morning and I awoke to the sound of my alarm. I had been sleeping well at night-time, for the past month or so, yet continued to wake up feeling drained. I was exhausted. I began to make my way through my morning routine, without the need to think about my actions. I methodically put the kettle on; took two mugs out of the cupboard (one for me and one for my boyfriend) and dropped tea bags into them; took out my water bottle from the fridge; and put a green tea bag into my flask, ready for work. I then headed to the bathroom to continue my habitual preparations for the day ahead.

Whilst in the shower, for a few moments I appreciated the feeling of the water on my head and body; washing away some of my sleepiness. Just as always, I began to cycle through the components of the advancing day in my mind; pondering over tasks to be completed during this time. And then it happened. Without warning, my eye-sight became blurry. I started to feel hot. Within seconds my surroundings inside the shower cubicle were spinning. I felt an uneasy disconnection from my body, similar to the feeling of unsteadiness that comes from drinking an excessive amount of alcohol. I could feel myself becoming short of breath. My ears were full with the feeling of pressure; causing a sharp pain. My legs started to feel weak, and I rapidly pushed my hands flat against the shower cubicle as I supported the weight of my body down towards the tray; moving into a crouching position. I needed air. I awkwardly forced the shower screen open. Then the nausea hit me; one last blow from the attack. I crawled to the toilet and allowed my head to bow heavily over the bowl. On my knees, my elbows pressed against the hard plastic of the toilet seat, I shakily positioned my arms upwards; enabling my hands to cradle my head in position. I stared wearily at the toilet water as it seemed to whirl around erratically.

After what I guess was about five minutes of extreme body weakness and breathing deeply into the toilet bowl to stabilize myself, I managed to crawl across the floor to where I had earlier dropped my nightclothes. I was able to dress myself in my vest top and shorts and I slowly grasped the bathroom door handle; carefully testing the strength in my legs as I started to stand up. I began to walk the 15 or so steps towards the sofa. I was still feeling fragile. My body felt like it was in a continuous fall against the wall which I leant on with all my weight; shuffling through the kitchen into the living room.

I sat on the sofa and stared at my mobile phone. I couldn’t focus properly. I didn’t want to have to make the phone call. I didn’t want to have to call in sick again. I had only been back at work for a month since the summer holidays and had already taken 2 days absence due to illness. I started to consider whether I could go to work. Could I cope with the motion and the crowdedness of the Metro train? Would I be able to walk up and down the stairs at school? Could I tolerate the classroom noise? Of course, I couldn’t.

After making the call, I made my way to the bedroom, continuing to support myself with my hands against the wall. My boyfriend was still sleeping, as I slowly and carefully pulled my body onto the mattress and wrapped myself in the covers. I was cold. My boyfriend’s hand began to touch my hair, as if examining it with confusion; somewhere in the midst of sleep. I realized my hair was wet. I didn’t know whether I had finished washing it before the attack had happened. I didn’t wake my boyfriend. His alarm would be going off soon.

I spent the day on the sofa and slept away the hours. The reality of what had happened didn’t really occur to me until I woke up later that day.

Even though I often experience dizziness, I hadn’t had an actual vertigo attack since the day of my hearing loss; two years ago. This new attack brought the difficult times I had dealt with during the past two years, to the forefront of my mind. In the past, I’d been given numerous possible diagnoses to explain my hearing loss: Meniere’s Disease, Cochlear Hydrops, and Endolymphatic hydrops. Irrespective of the ultimate diagnosis, there was no escaping from the ramification of the abnormal fluctuation of fluid in my inner ear. Like a big slap in my face, this new attack forced me to comprehend the reality of my situation. I was never going to be able to get away from this. It wasn’t going to get any better. I was, in this moment of contemplation, emotionally back to where I was 2 years ago: scared at the prospect of living with this unpredictable condition.

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 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 travelling 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 scariest 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 the 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.

Taking Corticosteroids

When I left the hospital, I was given a prescription for Prednisone tablets, which are a type of corticosteroid. I was to take them for four weeks, each week decreasing the dose. As I have mentioned before, corticosteroids are different from the type of steroids that you hear about athletes abusing.  They mimic the effects of hormones that your body produces in your adrenal glands, which are just above the kidneys. If they are taken in doses that exceed your body’s usual levels, corticosteroids can suppress inflammation. They also inhibit your immune system, which can help control conditions in which your immune system mistakenly attacks its own tissues. If you stop taking Prednisone abruptly or taper off too quickly, some people can express withdrawal symptoms such as severe tiredness or body aches. Another reason for gradually coming off corticosteroids is that this gives your adrenal glands time to resume their normal function.

With taking corticosteroids can come many different side effects. For me, there were 4 main ones. The most noticeable effect for me was the loss of my muscle tone; very quickly I lost the definition in my arms and my legs. It was nearly autumn-time in Madrid, but the days were still often warm. I would enjoy going for short walks with my boyfriend, and in the warm weather, I would sometimes have bare legs. Every day, when I looked down at my legs, they seemed to get thinner and thinner. I called them my Bambi legs. At first, the sensation when walking, was as though my body was really light and I felt like I was almost gliding. Later, my legs started to become achy and wobbly, and I would become tired much more easily. Next were the hamster cheeks. I had read that people who take steroids can have a redistribution of fat. As the days went on, my cheeks seemed to get fuller. This side effect, however, didn’t bother me too much. My face has always been very slim, and slightly puffy cheeks actually didn’t look too bad. I felt lucky, for the first time in my life, to have such a thin face, as I know that this is a side effect that can really upset takers of Prednisone who start off with more rounded faces. Similarly, another side effect was the little tummy bump that seemed to be growing with every tablet I took. It wasn’t that the tablets were making me fat, in fact, my arms and legs were getting thinner, but that I had a little distribution of fat around my tummy that didn’t seem to be a result of how much I ate. Then there was the crying; this started when I was in hospital. At first, I put my teary outbursts down to my situation: I was scared and tired and felt helpless. However, I realized that I didn’t seem to have any control over my emotions and would randomly start crying. These emotional eruptions continued during my weeks of taking the Prednisone at home. I would find myself thinking about my situation, about possible causes for my hearing loss, and about a future with unilateral hearing, and I would break into a mess of tears. I guess that when thinking about my condition, it was quite a normal reaction to become upset. However, there were times when tears were just unwarranted; sometimes my boyfriend would come back from work and I would be happy to see him, so I would cry. He would get me a cup of tea, and I would cry. I ended up telling him to ignore me when I was crying, especially when I was in the hospital and he had enough to worry about, than me bursting into tears at regular intervals. After taking corticosteroids for only a few weeks, I have so much sympathy for people who have to take this kind of medicine for longer periods of time. I know corticosteroids can save lives, but it is with the risk of some nasty side effects.

Every week, on a Tuesday, I would go to the hospital for steroid injections in my ear. There was about an hour each time, immediately after having the injections, that my ear felt more ‘open’ like there was slightly less pressure. But after that hour usually followed a headache and some pain deep inside my ear, with any small improvement diminishing to nothing.

It took a few weeks to get the results from my MRI scan. My doctor printed off the information and told me that everything was ‘normal’. Although I was happy that there was nothing sinister on the scan such as an acoustic neuroma, I also felt somewhat frustrated, as we were still no closer to knowing what had caused my hearing loss. I found myself constantly searching on the internet for an answer, because it seemed like nobody else had one to give me.

Time to Go Home

It was Friday and what I was hoping would be my last day in the hospital. My roommate had also been told that she may be able to go home on this day, and when we awoke that morning we greeted each other with optimistic smiles and crossed our fingers.

During my week in the new room, friends came and visited me nearly every day; visitors who all came with stories and who were all bearing gifts. One day, my friend who was heavily pregnant at the time, came to visit. She shuffled radiantly into my room, carrying an enormous and beautiful tropical-looking plant. She is only a small lady, and I could barely see her behind the long green leaves, and the red cellophane wrap which surrounded the plant. She made me giggle with stories about her pregnancy. She was only a couple of weeks away from her due date, and she told me how she felt like her hands and feet were so swollen that they resembled pig’s trotters! She also spoke about the various methods she had been trying in order to go into labour, and how she was going to start drinking some special herbal tea that she hoped would lead to a successful result.  After chatting for a long time, we said goodbye; both wishing the other well with the new challenges life was going to bring. Another friend, who I have worked closely with for around 2 years, came to see me with her husband. This friend is much taller than me, and she gives the best hugs. When she entered the room, she enveloped me in her comforting embrace. She lives outside of the city, and she brought me figs from her garden and told me all about what had been going on at the school I work at. On Thursday evening, two other colleagues came to visit; one Italian and the other Spanish. They brought me a big card with drawings from all the children in my class, and it made me feel sad to not be able to be there with them. Again these friends told me about more news from my school, and updated me on how the children in my class were doing.

Whilst in hospital I had been desperately looking forward to normal everyday life. My boyfriend and I had talked about what I would do when I got home: take a long shower, put on clean pyjamas, eat spaghetti, go for a walk in the sunshine, watch a film together, have a cup of tea, eat Marmite on toast, sleep in my own bed… The normal seemed so exotic to me now!

My roommate showered promptly that morning. Her doctor visited the room early and I could hear him making preparations for her departure. I felt so happy for her. After the doctor had gone, she went to our cupboard and took out some clothes. Shortly she emerged from our bathroom, in a fitted flowery dress, and looking revitalized. I had to wait to be disconnected from the IV machine, and then I went to have a consultation with a specialist. It was the same specialist I had seen on Monday. There had been no improvement in my situation. I still couldn’t hear in my left ear, and I was also finding loud noises uncomfortable, and was experiencing tinnitus and fullness of pressure in my ear. I was told that I would need to take Prednisone (a type of corticosteroid) for four weeks, in decreasing doses each week. I would also continue with the intratympanic steroid treatment of having injections in my ear, every Tuesday for three more weeks, and I would need to make an appointment for an MRI scan. I was still hopeful that the medicine would start to work in tablet form, and the thought of being able to properly relax and rest in my own home also made me optimistic for a recovery. When I got back to the room, I quickly showered and put on the grey dress that I had worn a week ago when I was admitted. It felt great to be wearing normal clothes. Soon after, I was again attached to the IV medication and I waited, sitting on my bed, for my paperwork to arrive and to indicate my time to go home. I waited for a few hours. I said goodbye to my roommate and we gave each other a hug and wished each other a quick recovery.  It wasn’t too long before I was walking to a taxi, holding on to my boyfriend with relief. It seemed so bright outside. Very soon I was home.

Two weeks later it was the day of my MRI appointment and I received a message from my friend. She wrote that today we would both be in hospital. Beneath her message was a photo of my friend with a joyful smile, in a hospital gown, waiting for her baby to arrive.