Some Kind of Vestibular Disorder 

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

Image by Pete Linforth from Pixabay

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

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

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

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

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


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

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

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

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

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

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

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

 

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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.

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.