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 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 the 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 traveling on public transport, following a hearing loss. Dana explains how her daily commute became easier during the 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 traveling 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 night clothes. 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.

A note on diuretics (and more medical terminology)

Less than three weeks after my consultation with the new Ears Nose and Throat (ENT) specialist I went for my referral meeting with the nephrologist (kidney doctor) to ask her opinion as to whether she thought it was safe for me to take diuretics. Diuretics are drugs which reduce fluid accumulation in the body. They are commonly used in the management of the symptoms of vertigo, hearing loss, tinnitus and aural fullness in patients with Meniere’s disease or endolymphatic hydrops. Endolymphatic hydrops is an increase in the pressure of the fluids in the chambers of the inner ear and is thought to be the underlying cause of Meniere’s disease. Diuretics are believed to work by reducing the volume (and therefore also the pressure) of these fluids. The specialist, with whom I had consulted in London, had told me that I had a form of endolymphatic hydrops in my (good) right ear. He said it was very probable that I also had hydrops in my left ear, and this had been the ultimate cause of my hearing loss.

The nephrologist asked me questions about my general health and family medical history and then gave me a basic examination; asking me to stand up whilst she tapped my lower back. She decided that since my left kidney had been removed in my infancy, and since I hadn’t been experiencing any issues with my right kidney, that it was fine for me to take the diuretics. She stressed the importance of dealing with the issues with my ear, as this was an immediate concern. I would carry out a kidney function test and also have an abdominal scan to check my right kidney was functioning OK; but neither was of any urgency. I was to try taking the diuretics and see if they provided any relief.

On my next visit to the new specialist, two weeks after meeting with the nephrologist, I was given a form of diuretics called Chlorthalidone 50mg. I was also given a potassium supplement to take, as this type of diuretic would cause to me to also lose potassium that is needed by the body.

The diuretics provided no improvement in my condition or with the pressure in ears. In fact I had some unpleasant side effects.

I started to take the diuretics the day before my boyfriend and I were due to go away for a long weekend. The first day of taking the pills left me feeling dizzy and lightheaded. I assumed this was something that would gradually lessen, the more my body became accustomed to the medication. The second day of taking them, I seemed to have a stronger reaction. On one occasion when my boyfriend and I were in the train station, I started to feel really hot and started sweating. The activity of the station was whirling around me, and I had to stop walking until my dizziness subsided. This was very much like the ‘Warning signs’/Meniere’s-type attack I was trying to discourage.

The extreme lightheadedness continued for the first three days of taking the pills; every day seeming to become more intense. On the morning of the third day, I was having a shower in the room where we were staying, and again I began to feel hot and faint. My legs started to lose strength and I stumbled out of the shower; transferring my body weight to my knees. I knelt down in order to put my head over the toilet. I felt very sick. After a few minutes, I went back to bed to lie down and rest, until I felt less dizzy.

I didn’t want to spoil our time away, as we’d both been looking forward to it, and I felt like we both deserved a nice break. We did enjoy our time, but it was at a much slower pace than we’d anticipated. I spent our weekend away, walking around in a state of dizziness; waves of nausea and tiredness attacking me at random intervals. Whilst sitting in a beautiful restaurant, sharing delicious food, and simultaneously experiencing an intense moment of nausea, I decided that maybe this medication wasn’t right for me.

My body seemed to lose weight quickly. The excess water that was leaving my body seemed too much for me. My arms and legs felt weak. The sensation of needing the toilet was worryingly different. I would have the desire to pee, but when I did, it was almost as though I had another secret bladder next to the one I would be getting the usual warnings from. So I would pee normally, and then more and more would come from what felt like my secret second bladder. It was all very odd. On the third day of taking the pills, when these unwanted effects didn’t cease, I decided I needed to stop taking them.

It was a weekend and I was away from Madrid, so I couldn’t speak with my doctor. I started to research diuretics in more detail. I read about how to stop taking diuretics safely, and found a lot of conflicting evidence. It seemed that once people were given them, they were generally on them long-term. Some information said to eat a low salt diet when stopping. Most information said to give up the pills gradually, rather than to stop abruptly. I was eager to stop taking them. I decided I would take half the following day and a quarter the next day, and then no more.

I did as planned, tapering my dose. The next few days the dizziness and sickness continued, but after about a week they had stopped. I then started to have extremely painful legs. It felt like there was too much pressure in my veins and it was causing a stinging sensation; especially when I tried to relax. I found some relief from rubbing my legs. I read that, although the pills were out of my system by now, that my body would be overcompensating for a while, for the excess salt that was being excreted. I think every time I ate salt, even though very little, my body was reacting to it negatively. Two weeks after stopping I felt back to normal. When I was back in Madrid, I had consulted with my GP and she had agreed that the side effects sounded too severe to have continued taking the medication.

Around five weeks later I had another consultation with the new ENT specialist. He prescribed me another type of diuretics, Torasemide 10mg. I was dismayed. I really didn’t want to take any more medication, as my body hadn’t been tolerating medicines well. However, he was keen for me to try this treatment, along with continuing a low salt diet. I was also taking 40mg of Tavonin, an extract of Ginko Biloba, EGb 761, which is a natural vasodilator (herb than opens and expands the blood vessels), which allows blood to flow more easily. In my case, the aim was to improve the blood flow to my ear. These were the usual treatments for Meniere’s Disease. Perhaps the new pills could help with my tinnitus and fullness of pressure in my ear. Anything was worth a try…

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.