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.

Advertisements

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.

Frustration

The next few weeks after leaving the hospital, blended into months. I finished taking the corticosteroids and I had 4 injections of steroids into my ear, each a week apart. Yet there was still no improvement in my condition.

Friends and family were keen to ask me how I was feeling. They saw that I was out of hospital and assumed that everything was OK. But it wasn’t. I was struggling through every day with deafness and other related issues: sensitivity to noise, light-headedness, tinnitus and the ever-present pressure in my ear and head. I almost felt like I was letting people down; telling them that I was not feeling any better. I looked like my usual self, but was feeling awful. There was no visual evidence of the discomfort and frustration I was feeling. My problem was completely invisible. If I had a visible scar, maybe people would be able to empathize with my situation a little easier. I wanted to tell them something positive, and I didn’t want to upset anyone, by responding honestly. I didn’t feel any better. Nothing had changed since the day in the auditorium when this all began.

Everyone seemed to have a story about an ear problem. There were stories about ear infections and tinnitus, and about ears feeling clogged when flying. Many people also turned into specialists; asking me if I had recently been swimming or if I had been on an aeroplane? Did the hospital specialists check for ear wax? People didn’t really know what to say to me. I know that they wanted to sound positive, helpful, sympathetic…I did appreciate their support. People just wanted to show they were thinking of me. I would have done the same, if one of my friends or family were in my position. I would have wanted to help solve the mystery and for everything to be better. I didn’t want to sound negative, but I didn’t want to lie to people. Sometimes the truth is difficult to share, and it can also be difficult for others to hear; especially when they have feelings invested in the person sharing the news.

I couldn’t go to work. Being an Early Years teacher demands having energy; being able to tolerate high levels of noise, being able to go up and down stairs without feeling lightheaded, being able to hear in background noise, being able to sing and dance without feeling dizzy. The children in my class were only 4 years old. They needed a teacher who could give them the care and attention they deserved. I missed being in a classroom. I only briefly met my new class, who I instantly loved, and who I felt like I’d abandoned. It was so frustrating. I could walk and talk and breathe and see. I looked the same. But to be able to do my job properly I needed to feel better.

I was having meetings every two weeks with my doctor to inform her of any updates. She also seemed to be getting frustrated with the absence of any change in my situation. Every time I met with her I would tell her that I felt the same. One time she explained to me that it was difficult for her also. Usually she can give her patients some form of hope. Usually she can give her patients a diagnosis, or prescribe some medication, and then with time, symptoms will improve. Usually people show some form of recovery and this gives them hope. However, in my case there had been no change in 10, 11, 12 weeks, and she knew it was difficult for me. She told me to take comfort in the knowledge that my hearing loss wasn’t a result of a more sinister problem, such as stroke or a tumour.

There was still hope. 12 weeks after the day of my sudden hearing loss, I went to see a specialist at the hospital. He told me that sometimes hearing can come back spontaneously within the first 6 months after the occurrence of hearing loss. I was told to wait and see if my hearing would improve naturally. I would go back to see the specialist in 3 months, and if there were no changes in my condition, they said a hearing aid might help me.

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 to 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 in to 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 labor, 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 the 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 the 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 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.

Injections and a bit of love

The next morning, after seeing another specialist, I had a visit from the doctor who I had initially seen when I was first admitted to hospital, 4 days ago. She told me that there was another treatment called Intratympanic Steroid Treatment which would involve injecting steroids into my ear, once a week for four weeks. I told her that I was willing to try anything, and very soon I was lying on my bed as she tipped drops of anesthetic into my ear. She went away, after telling me to lie still and let the anesthetic numb my ear drum. After about half an hour the doctor came back and took me to a room just down the corridor. I was asked to lie down on a cushioned bench and to stay very still. I couldn’t see what was happening, but the doctor talked me through her actions. First she used a little vacuum-like tube to suck the anesthetic drops out of my ear. Then I felt a needle pierce my ear drum and travel through my ear, to what felt like deep inside my head. I could feel the needle somewhere between the bone of my jaw and side of my throat and was experiencing a scratchy pain in this place. I was desperately trying to stay still. My eyes were watering with nervousness and discomfort. After the steroids had been injected, I then continued to lie in the same position for about another half an hour to allow the steroids to infuse into my inner ear. I was so tired and lying there on the doctor’s bench in my hospital gown, I felt extremely vulnerable. I closed my eyes.

When I got back to my room, I was given a handful of cotton wool to soak up the mixture of liquid and blood that had started to drip out of my ear. Whilst feeling sorry for myself, and gently dabbing my ear, my boyfriend entered the room.

When I was in hospital my boyfriend was always by my side. Every day he would appear in the hospital room doorway with a smile. He’d bring pastries for breakfast, which we’d enjoy together in the mornings. When I was fed up of the cold milky hospital coffee, he brought me peppermint tea in a takeaway cup from a café outside the hospital. Every day he asked me for a list of things he could bring me from home that would make me feel more comfortable. He’d sit by my bedside doing work on his laptop while I slept. He would hug me tightly when I was upset or scared, and would always manage to calm me with positive words. One day, when the intravenous was uncomfortable, he washed my hair for me – I joked with him, that it was the most intimate I’d ever been with anyone! .

One day I was desperate for some fresh air, and my boyfriend and I decided to escape for a bit. I put my denim jacket over my shoulders and put my plimsolls on. Dragging my IV stand with two swinging glass bottles, we scurried to the lift. Once on the ground floor, my boyfriend carried my IV stand down the ramp to some exit doors, with me following behind. When we got outside we sat on the wall where the hospital staff usually gathered on their smoking breaks. There was a slight chill in the air as summer was moving into autumn; though the sky was a lively blue. I was longing to go home.

Before my sudden hearing loss happened, I would often rush through my days and routines, and everyday life would pass by, without time to pause or appreciate it. It was when I was in hospital I had time to reflect. I had moments of intense emotion, where I felt so thankful and fortunate for the love and care my boyfriend was showing me. I could see he was scared, and that he needed someone to talk to as well. I know it was hard for him, especially going back to an empty apartment with a mind full of worries and questions.

New medication

My first night in the room was an upsetting one and I felt like I was also imposing my distress on my roommate. In the early evening a nurse entered our room with a small, cubic-shaped machine and an intravenous stand; which looked like a cheap metal, unembellished hat stand. What I understood from what she told me in Spanish, and what her actions were telling me, was that she would be giving me some medication which involved the machine. The medication I’d previously been given had not required a machine, so I was puzzled at its presence. She proceeded to attach the machine to the stand, tightening a clamp at the back, and then clumsily secured an IV line to my arm; passing this thin plastic tube through a gap in the machine. She attached a small brown glass bottle of corticosteroid liquid to the top of the stand, and told me to press the emergency call button to alert her if the machine made a beeping sound. Within a few minutes the beeping started. As instructed, I pressed the red button that was attached to a cord next to my bed. ‘Beep Beep Beep…’ With each Beep I felt more and more awkward as I was certain I was disturbing my roommate. The nurse came back to the room to see what the problem was. She had short brown wavy hair and wore red glasses. Her glasses were on a string around her neck that she kept taking on and off in order to look at the machine, scrunching her face into an unnerving expression. She straightened out the IV line and then fed it back through the machine, pressed a button, and again told me to call her if the machine beeped. A few minutes later, ‘Beep Beep Beep’. Again I pressed the little red button, and again I felt concerned about disturbing the calmness in the room. This time the nurse took longer to return, and my roommate asked me if I had pressed the call button. I reassured her that I had. Back came the nurse, looking even more frustrated. Fumbling with her glasses again, she straightened out the IV line and then fed it back through the machine, pressed a button, and yet again told me to call her if the machine beeped. The third time it beeped, the nurse entered the room looking puzzled and exasperated, and this time she decided that it was a problem with the intravenous line in my arm. She then proceeded to check my arm for more suitable veins; taking her glasses off and putting them back on, to be certain of her choice. She decided on a rather uncomfortable location where my wrist meets my hand, just down from my left thumb. I turned my head so as not to watch her make the initial puncture in my skin, and tensed my face as I felt her awkwardly insert the IV line. She taped the tube to my arm, and again straightened out the line and then fed it back through the machine, pressed a button, and yet again told me to call her if the machine beeped. Once she had left the room, and the machine had been quiet for a few minutes, I lay back on my bed and tried to relax. Since the medication bottle was small, I naively expected its contents to have been transferred into my body quite quickly, and then I assumed it would be unattached from my arm and I would be able to sleep comfortably. However, I soon realized that every few minutes when the machine made a mechanical clicking sound, only the tiniest of drops was released into the tube, and into my arm. I fell asleep, thinking that I would call a nurse when the bottle had finished, so they could disconnect me. An hour or so later, I awoke with an acidic stinging sensation in my arm. My arm had started to become swollen just above the line entrance, where the unpleasant liquid was entering my body. With every tiny drop, came more pain. I lay there, drifting in and out of uncomfortable sleep, until around 4am, when the machine finally beeped to signal the bottles emptiness. After only a couple of beeps, in came another nurse. This time it was a short, middle aged man, with a calm and friendly nature, and who entered the room with a torch in his mouth, so as not to disturb us with the room lights. I told him I was in pain, and his demeanor seemed to suggest that this was normal, although I was very tired by this point, and could not focus on what he was telling me in Spanish. As he removed the tube from the bottle, I heaved a sigh of relief. But a second later, to my dismay, he attached another identical bottle to the line, straightened out the line and then fed it back through the machine and pressed the button to turn it back on.

By the second night, my arm was so swollen from the excruciating buildup of medication that the nurses had to try two more IV locations in my other arm, and I also finally ended up getting a different machine.