Review of my new ear

Receiving my new ear was a positive experience. I was hoping my CROS hearing aid would give me some hearing ability on my left side. I was hoping it was going to give me a chance of hearing some elements of speech on my left side; to help me gain some confidence in communicating with others. I was hoping my CROS hearing aid would provide me with some support with hearing in situations with background noise.

Contra Lateral Routing of Signal (CROS) is a hearing aid technology for people with unilateral hearing. The CROS system is for a user who has relatively normal hearing in one ear and has hearing that can’t be aided in the other. The receiving behind-the-ear device on the deaf side transmits the sound to a device on the good side. The user hears the amplified sound from the deaf side in their good ear. The person hears the sound from the good side naturally in their good ear, without amplification.

I would be trialing the device for three months to see if it would be useful for me. If I decided that it wasn’t helpful, then I would be entitled to a full refund.  The CROS hearing aid technology was relatively new, and I’d read that some people really benefit from their CROS hearing aids. I even read someone’s account saying that, with the aid they were able to hear in background noise, and it was like they didn’t have a deaf side anymore.

I was very happy with the way my new ear looked. The aid components were a similar colour to my hair and if I chose to wear my hair down, they were almost invisible. However, I actually liked other people to see them. When traveling on the Metro for example, I would tuck my hair behind my ears so that they were visible. I liked that my disability could now be seen. Before I received my hearing aids, I had felt some frustration at the fact that people had no visible clue of any difficulties I might be having with communication. But with my new ear, if I failed to react to someone on my deaf side, or didn’t move out of the way for someone, I had a visible reason for my lack of response. This made me feel more relaxed on public transport, and in the city. I didn’t feel like I was constantly looking to my left to check if there was someone there, or if the lips of the person next to me were moving.

The main positive outcome of my new ear was that it was really wonderful to have some sense of hearing again in my deaf ear. If someone was speaking to me on my deaf side, the aid would make a high-pitched distorted sound, similar to a ‘beep’,  for each syllable spoken. These beeps would alert me to turn and focus my attention to my deaf side. Without the aid I would be clueless to the presence of anyone next to me on this side. It was comforting to know that if there was a sound on my deaf side, such as someone speaking, or a car approaching from the left whilst I was crossing a road, then I would be alerted.

I also had some frustrating experiences with my new ear. The component in my deaf ear kept popping out. I would fit the mold correctly inside my ear, and within minutes, the aid would have squeezed its way out, so that it was no longer fitted snugly. This meant that throughout the day, I would keep having to push the mold back into my ear. Also, although I was happy that I would be made aware if someone was speaking on my deaf side, the hearing aid didn’t help me understand speech. The high pitched beeping that occurred in time with spoken syllables became an uncomfortable sensation. After my hearing loss, I had developed a sensitivity to noise, and the aids job was to amplify sound; this obviously did not help my sensitivity situation. I became frustrated because I couldn’t make sense of the beeps. I knew they represented words, but however hard I tried I couldn’t hear any difference in the tones to identify letter sounds or words. My good ear was also hindered. My brain seemed to be paying so much attention to the strange sensations and uncomfortable noises brought on by the introduction of my new ear, that it struggled to concentrate and understand speech. So in effect, the aid actually hindered my ability to follow conversation.

One of my hopes had been for the aid to help me hear better in background noise. This was not the case. The mix of music and chatter experienced in a restaurant was overwhelming for my new ear. It would produce screeching sounds and amplify all the noise I didn’t want to focus on. Going out for a meal for a friend’s birthday with a group of people, was a confidence draining experience. I was only able to focus on one person talking, if I could get close enough to them with my good ear to hear them. This meant that I wasn’t involved in the dynamics of the group chatter. I felt isolated and I resorted to smiling and nodding at people to fake my following of any group discussion or jokes. This is a similar overview of my restaurant experiences with more than one person, when I am not wearing an aid. With the aid, the screeching noises also made it difficult for my good ear to focus on conversation.

The amplification of sound from my new ear of everyday city noise such as motor cycle exhausts, building works and sirens, was at times very uncomfortable. Therefore a walk around the city would result in me opening up my aids or covering them to stop them working when confronted with one of these overly intense sounds. My life in a busy city didn’t seem to be a suitable place for my new ear. The city noises when amplified were just too uncomfortable, and weren’t helpful in aiding me to decode speech or make sense of the noises around me. The only place where the amplification of noise didn’t cause too much noise discomfort was at home…but home was the one place I felt like I didn’t really need to wear my hearing aid. At home I could generally hear OK when speaking with my boyfriend in the relatively quiet environment of our apartment.

There were also some strange experiences. One day, I had fitted the right component of the aid into my ear, when I started to hear what sounded like a radio. I had no idea where the noise was coming from. I thought that it was maybe something to do with the Bluetooth connectivity of the aid. Later I thought that it could have been noise being picked up from the television that was playing in the living room. Another time, I fitted the aids into my ears, and I realized that they felt much better; The sounds being produced seemed more natural and I wasn’t receiving the uncomfortable screeching noises. Then I realized the reason they were feeling more natural, was because the battery had died – The aids weren’t turned on! I was hearing normally in my good ear, but without the interference of the beeping from the device into my deaf ear!

I had willed my new ear to work for me, but it hadn’t provided me the support I had hoped for. After three months of wearing it, I returned my CROS hearing aid. I felt some sadness when saying goodbye to my new ear as it had provided me with some hope.

 

Underground scanning

Back to my story…

Two weeks after my consultation with the Maxillofacial doctor, I went for a bone scintigraphy scan. The scan was to be performed in the basement of the hospital. I walked down some red painted steps into a concealed underground hospital corridor. It was a world of large metal pipes and echoes. Since the scan involved radiation, I guess it was to be performed in an isolated area to protect other patients. The first step of the scanning procedure was an injection of radioactive dye. I was then asked to wait in a room with around twenty other people. The room was square, and painted a tired off-white colour. At the entrance to the room were two toilets. There were no posters on the walls. The perimeters of the walls were lined with plastic chairs. In one corner was a table covered with a plastic table cloth and large bottles of water and plastic cups. I was told to drink at least 5 cups of water, and to use the toilet as much as I needed to. I had to wait for the dye to travel in my blood stream around my body. I watched as people’s names were called. They were asked to go to the toilet, and then they would go out of the door of the waiting room for their scans. As time went on I watched as people started to become agitated with the long wait. One old man started to pace back and forth, leaning heavily on his walking stick. Another man positioned himself near the door, making himself very visible; seemingly hopeful to be the next person called. I waited for 5 hours.

The scan took about 20 minutes. The machine was white, and resembled an MRI scanner. At one end of the machine, there was a ring doughnut-shaped compartment. Positioned at the entrance to the centre of the doughnut hole, was a long examination table that had a groove that ran through the middle of it. I was asked to lie down on the table. My body slotted into the groove. My head was supported with a pillow, and another pillow was placed under my knees. I was then wrapped up in a blanket, with my arms hugging my body, and a belt was fastened around me. I imagined that my blanket-swaddled body resembled a snug fitting battery in a remote control battery compartment. The technologist positioned another part of the machine around my head, and then she went into a small room behind a glass screen and turned on the machine. The robotic arms of the machine rotated slowly around my head, making loud clicking sounds. Next the battery compartment started to move like a conveyor belt towards the entrance to the doughnut. I was transported inside the doughnut. I looked up and saw the top of the machine was only a few inches from my head. I focused my stare on a small area of the machine above my head, so as not to move, and to prevent my thoughts from drifting to contemplation of my confinement. More loud clicks followed, and more images were taken.

About a week after I had the scan, I met again with the new ENT (Ears Nose and Throat) specialist. He said he was happy to see me looking well, and asked if I was back at work yet. In my previous consultation he had been concerned about my well-being. I told him I hadn’t yet returned to work. He said I would have to try soon, but he was worried about me being in an environment with lots of noise, as he knew I’d find it difficult.

Then he changed the subject of discussion. He asked about my breathing; in particular whether I had any difficulties due to my deviated septum. He asked whether I breathe through my nose or my mouth. I was asked to sit in a big black chair opposite his desk. He then performed a Fiberoptic Nasopharyngoscopy. This is an imaging technique, using  a long thin black flexible wire with a light on the end, that is inserted into the nose. It can allow visualization of the nasal cavity, septum, and other structures. The specialist slowly fed the viewing tube down my good (right) nostril, until I could feel it brushing past my throat. My eyes started to water involuntarily. I remained in rigid stillness. This was a procedure that one of the other specialists had done before, so I knew the level and type of discomfort I would experience. Then he removed the tube and started to insert it into my deviated (left) nostril. This I had never had done before. He got as far as the top of my nostril; the furthest area you can touch with your finger. Then he stopped. He said the nostril was completely blocked due to deviation of my septum. But then, to my bewilderment, he continued to feed the tube into my nose; forcing it further down towards my throat. I was in extreme discomfort. My eyes continued to produce uncontrollable tears that streamed down my face. He carefully removed the tube. My body was shaking. The specialist told me that my left nostril was completely blocked. He said that I couldn’t breathe through this nostril – this I was obviously something I was aware of.

I then sat down again at his desk, more relaxed now, and he asked if I wanted to have an operation to correct my septum; that would help me breathe better. He said I would probably need the operation in the future anyway. I said I’d like to wait for the results of the jaw scan first, and then if everyone was OK with that, then I’d prefer to have the operation sooner rather than later. I thought it would be better to have an operation in the present, rather than in old age. Also, I’d like to be able to breathe better, especially when I’m trying to sleep. He said he thought this was a good plan. He said that correcting my breathing should help to make me feel more comfortable, and could possibly help with some of the stuffiness I was feeling in the left side of my head, since my hearing loss. I would meet him again in a month.

Two weeks after the bone scintigraphy I was back at the hospital for a consultation with a maxillofacial (jaw) specialist to get my results of the scan. I was going to find out whether I had Mandibular Condylar Hyperplasia (a rare bone disease that causes asymmetry of the face amongst other things). My boyfriend accompanied me for this appointment, as I was feeling nervous. The specialist explained that the results of the scan showed that I didn’t have the rare bone disease…Breathe…She said that it did however show deviation of my jaw. I was then led to the adjacent room where I sat in a dentist-style chair and she examined my jaw; asking me to open and close my mouth. She told me there was a problem with my jaw muscle. My boyfriend asked whether my problems with my ear could be related to my jaw issues. She answered discernibly carefully, saying that ‘the ear pressure could be associated with the jaw’. She wrote down recommendations of treatment for my jaw problems on a piece of paper for me:

  1. Go to a dentist and have a new night guard made. This would protect my teeth and jaw muscles from night-time clenching.
  2. Try taking Robaxisal (a muscle relaxant) for 5-10 day cycles. The specialist felt my jaw was probably in spasm. This medicine could help release some of the tension.
  3. Seek treatment from a specialist in craniofacial rehabilitation  – this is a type of physiotherapy for the jaw.

…Next stop the dentist…

Deaf Awareness Week

Hello everyone. This week is Deaf Awareness week, and today I am taking a break from my story.

I’d like to introduce you to Richard over at https://2bottlesofmilk.com/.

As well as writing about being a dad of two, Richard also writes about his son Leo’s hearing impairment. Leo was born with hearing loss, and Richard’s blog shows the fitting of Leo’s first hearing aids when he was a baby, and documents Leo’s Cochlear Implant Journey. Richard and his family are raising hearing loss awareness by posting a variety of guest blog posts throughout the week, from people who have experiences of different types of hearing loss.

Please take some time to have a look at his site throughout the week!

Below is my guest post that will be featured on Richard’s blog this Thursday. My post gives an overview of my experience of Sudden Sensorineural Hearing loss (SSHL)

Nine months ago I was sitting in a school auditorium, listening to a guest speaker giving a presentation. I am a teacher of Early Years children, and this was part of the school training sessions, a week before the start of the new school year. I lifted my head up from writing some notes, and out of nowhere came a loud screeching sound that filled my head with pressure. The sound grew quieter into a dull ringing, but the pressure continued and I was soon feeling light-headed and disoriented. This is how I lost the hearing in my left ear. There was no accident or known infection or virus that caused it. There was nothing inside my ear blocking the sound. It was not a gradual deterioration. My hearing just disappeared. I had experienced something called sudden sensorineural hearing loss.

The treatment that followed was anti-inflammatories and nasal sprays prescribed by my doctor. When these didn’t help, I was referred to a specialist, who told me to go to the hospital where I received a week-long course or intravenous corticosteroids and anti-viral medication. I continued taking the corticosteroids for another four weeks after leaving the hospital. I also received four injections of steroids directly into my ear, each a week apart. I went for an MRI scan which ruled out a tumour as the cause of my hearing loss; which of course I was relieved by. Yet nobody was able to find a cause of the loss of my hearing. Despite the medication and treatments I received, there was no improvement in my condition. I am now severely deaf in my left ear.

The obvious problem with being deaf in one ear is that I can’t hear. I have read about other people’s stories of sudden hearing loss and it seems that everybody’s experiences are unique. Many people lose their hearing in similar ways such as hearing a pop in their ear or feeling a fullness sensation in their head accompanied by pressure. Yet the after-effects can differ a lot. For me, it is not the actual deafness that is the main issue I am dealing with, but rather the other ‘hidden extras’ that come with my condition. Of course, I get frustrated by not being able to hear well. How many times can I ask my boyfriend what he has just said to me? How many times can you ask someone to repeat themselves, before they decide that what they were saying ‘doesn’t matter’? But I am facing more challenging issues than just having unilateral hearing.

With only one hearing ear, I have no idea where sound is coming from. I might hear some music or a noise, but I won’t know which way to look to see what has produced the sound. Sound localization is a skill enabled by having two working ears, not one. I find it difficult to filter out background noise. When I am in a place with sounds such as traffic, people talking or music, and somebody tries to speak to me, I cannot hear them unless they are standing very close to me on my hearing side. Another issue I am having is that I developed a sensitivity to sound. I find loud noises painful and with loud noises, my head fills with pressure. The kitchen is an orchestra of cutting sounds: water running and clinking as it splashes in the metal sink, kitchen pots and pans clanging together, the ping of the microwave and the beeping of the washing machine, and the oven fan that blends the other sounds together; making a mass of pressure in my ears. Another uncomfortable part of my day is when I open the main door to the block of apartments where I live, and am immediately faced with city sounds of traffic and people. Eating crisps, or anything crunchy such as crusty bread, sounds so loud and distorted in my head. This was originally something I found really difficult to cope with, but seems to be getting better with familiarity.

One of the most upsetting things is that I have realized that many of the things I love involve noise. I love music and listening to podcasts on my IPod. Now I no longer can enjoy music how I used to. I have programmed my earphones to filter all the sounds from music into mono so that it ensures I don’t lose the sound of the drums or vocals when using only one headphone. However, this obviously means that all the sound goes into my right ear, which is already dealing with enough right now, and soon becomes uncomfortable with the intensity of the noise.

I regularly feel exhausted. I’m not sure why. Perhaps it’s my body trying to adapt and cope with feeling off balance and sensitive to my surroundings. Everyday sounds are tiring. With tiredness comes the difficulty of concentrating on individual sounds, which in turn makes the process of hearing conversation difficult. I also have continuous tinnitus in my deaf ear.  For me, my tinnitus is rarely just one constant sound, but rather a mixture. Some common sounds for me are: the sounds of swimming with my head underwater, bells, ringing and whooshing – like the sound from those corrugated plastic tubes that children swing in circles to make a noise.  During the daytime I am often able to disconnect from my tinnitus, as there are usually other ‘real’ sounds to occupy my hearing. However, when I am lying in bed trying to sleep I hear only my tinnitus. Every day at this moment, I wish for silence.

There have been difficult times where I have lost my confidence or when I’ve experienced moments of sadness and the feeling of loss. I sometimes think it would be easier to have been deaf in one ear all my life, than for it just to happen to me. I know how great music can sound in stereo. I know how easy it can be to talk with people and hear their responses over background noise. I know how it feels to enjoy the loudness of the cinema or to experience the force of live music at a festival bouncing through your body.  I also know there are people going through much more difficult and scary things. Yet it is only human nature to feel sad. I have felt angry at my body for letting me down. I lost a part of me that played a big role in enabling me to interact with the world. I am starting to deal with it. I will keep trying every day, to tackle the new challenges that come with my hearing loss. Eventually I want to be able to embrace my hearing loss, and not let it upset me, rather for me to take control. I want to enjoy the hearing that I do have and feel grateful for it.

Playing the game: another hospital appointment

Going to a hospital consultation, in a country where I only speak a little of the language, is not dissimilar to my time spent as a child playing adventure games such as Monkey Island, on my old Amiga computer. Yet instead of following the misfortunes of the hapless Guybrush Threepwood as he struggles to become the most infamous pirate in the Caribbean, the focus is on me, an English girl; half-deaf and with limited Spanish, trying to fathom her way around a Spanish hospital system. Yeah, it doesn’t sound as interesting, and it’s not, but it presents a puzzle in itself nonetheless. As in such adventure games there are questions, feelings of apprehension, and puzzles that must be solved before progressing with the story and moving forward in the game.

My game begins with the intense feeling of nervousness whilst sitting in the waiting room. I sit asking myself various questions: Will the specialist speak English? Will they listen to my Spanish and take me seriously, even though I’m obviously not fluent? Will they slow their speech down so I can understand some of the words? Will they be OK with writing down the names of any necessary tests, so that I can go home and Google them? Will I even hear them when they call my name!  My main hope is that they will be patient with me.

The next part of the adventure is the actual consultation. If I am not fortunate enough to meet a specialist who speaks English, I feel the difficulty level increase immediately, and uneasiness starts to claw at me. Trying to make sense of what a specialist is saying, involves me grasping at the words of which I know the meaning of, and putting them together as quickly as I can. Sometimes I find myself listening and trying to concentrate so hard, that I actually end up not concentrating at all. Sometimes I succeed in listening carefully and I manage to understand some words. However, in the time it takes me to make sense of the words, I end up missing the rest of what has been said. On occasions I am handed papers and may be told to take them to another department or area of the hospital, or to use them to inform another member of staff as to the nature of a follow up appointment. The next level follows my journey as I walk around the hospital following signs, and then coming to the realization that I have no idea where I’m going, or why I’m even walking around clutching my paperwork in the first place!

Four weeks after my appointment with the new ENT specialist, I went to the hospital for my referral with the maxillofacial doctor. The upper jaw is referred to as the ‘maxilla’, and the type of doctor I would be seeing, specializes in treating problems related to the hard and soft tissues of the face, mouth, and jaws. I went to the hospital by myself. As usual, my game began with me sitting and waiting anxiously in the waiting room. A mixture of questions were eagerly pushing themselves forward; fighting to be at the forefront of my mind. I scanned the faces in the room. There were people here of all ages. I had found myself sat next to an old man, who kept coughing loudly into a crumpled handkerchief. Whilst battling to ignore the interrogation of persistent questions in my mind, I couldn’t help but glance at a few individuals around me; studying their faces, and wondering why they were here. I’d focus for a while on someone’s features; looking at the shape of their jaw, and assessing the symmetry of their face, until I felt they had sensed my stare, and were about to look back at me. I’d then quickly move my eyes away from my subject.

My name was called, and I walked into a small room. Immediately the specialist started speaking in Spanish. Difficulty level up! I started to answer her questions, and I apologized that my Spanish wasn’t good. She reassured me by saying it was OK. The doctor had a young face, dark hair and radiated compassion. She listened to me as I explained how I had suddenly lost my hearing. She was writing everything down. Then she examined my jaw. She asked me to open my mouth as wide as possible and she felt the joint. She then asked me to close it. I repeated this a few times and she asked if I had any pain in the joints. She placed a tiny piece of card with measurements on, next to my front teeth, and told me my teeth were 3mm to the left, off centre. Then she told me that I was going to do a test. If the results of the test were negative, the treatment would be physiotherapy and wearing a night-time mouth guard. But, if the test showed that I have…then…Oh dear, my skills of following the Spanish conversation were dwindling. I had missed some important information. I told her I didn’t quite understand. She told me not to worry, and the main thing was that first I would need to do the test. I asked her to write down the name of the test and condition she was referring to, so I would be able to research it later at home. Then I was handed some papers and told to go to the receptionist.

Next I went around the corner to the receptionist. As she was speaking to me there was also another woman in the small room, speaking very loudly on the phone. I couldn’t hear my next instructions.  I apologized to the receptionist and said that I didn’t understand and that I couldn’t hear very well. She kindly accompanied me out of the door, handed me some more papers, and directed me to take them to a window down the passage. I thanked her.

Next level. I then walked forwards as far as I could go – which is the direction I was given, and wandered around for a bit. Then it hit me, the moment of realization that I didn’t know what I was doing or where I was supposed to go, or why! I spoke to a nurse who was talking to another nurse in the corridor. She directed me and told me I needed to get a ticket and then go to a window. I walked again in the direction she told me, but didn’t find a ticket machine. Hmm puzzling…I spoke to a man who was sitting at the Information desk in the entrance, and he printed me a ticket. Oh, there wasn’t a ticket machine – this man was in charge of tickets! Then he pointed to the first window and told me I was next. Next for what, I wasn’t sure! I handed the woman behind the glass screen my papers, and she was very patient as she spoke to me. I had to put my ear into the small opening of the glass, so I could hear some of what she was saying. I managed to make appointments for the test and also a follow up appointment. Then I went back to the receptionist in the maxillofacial area, and showed her my papers. She checked them. She seemed happy with my accomplishments and we said our goodbyes.

When I returned home I Googled the words the doctor had written down for me. The ‘gammagrafíatest was a ‘bone scintigraphy‘.  I would be having an injection of a dye of radioactive material. This dye would then travel around my body and emit radiation. Then a camera would take pictures of how much of the dye accumulated in my jaw bones. It was a test to rule out a condition called ‘condylar hyperplasia‘ which is a rare bone disease that affects the jaw bone, and causes asymmetry in the jaw amongst other things.

Anyway…Game over, for this day at least!

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…

My first run – Starting to feel normal again

Six months after experiencing sudden sensorineural hearing loss in my left ear I decided I was ready to go for a run. My body had been through a lot during the past few months. The hearing loss had been a shock. I had felt frightened and helpless. My body had felt like a vessel used for experimentation; exploring the effects of different types of drugs on my condition: anti-inflammatories, nasal sprays, intravenous steroids, intravenous anti-viral medication, injections of steroids through my ear drum and different types of vasodilators. My body had felt delicate and vulnerable; I had experienced side effects of weakness, loss of weight, low blood pressure, tiredness and dizziness. But enough was enough; I wanted to start to feel more normal again. I love running. Running always makes me feel happy. It makes me feel strong. It is also a time where I can completely forget about any worries or unwanted thoughts. I wanted to switch off from the recent past.

I had asked my chiropractor, the week before, as to whether he would recommend that I start running again. I remembered that, when I first met him, nearly 4 months ago, he had asked about what kind of exercise I did. Due to the problems I was having with my neck, he had encouraged me to take a rest from running until my neck was feeling better. At this time, I was also dizzy and taking medicine that my body was struggling with, and so didn’t feel strong enough to able to go running anyway. Yet now I wasn’t too dizzy and I wanted to feel stronger. I missed running and thought it might help cheer me up, and help me on my road to recovery. It was also another thing that I would be able to do for the first time with unilateral hearing – another experience to say I have tried, since living with single-sided deafness.

I waited for a few days after visiting my chiropractor, to go for my run. I wanted my first run to be on a sunny day. I wanted my first run to be a good run. I wanted to wake up, see the sunshine, and be spurred on by the beautiful Madrid weather, to go outside and have a go! I did exactly that. I had checked the weather forecast beforehand and it was going to be a nice day. I got out of bed when my boyfriend had left for work, and I rushed to the window. The sun was shining optimistically in the sky, and I decided today was the day.

Putting on my running clothes, I noticed how my body had changed since I had last worn them in the summer before I lost my hearing. My legs were thinner and my bottom was flatter and my stomach looked small and weak.

I walked briskly for 15 minutes to the nearby running track. It is difficult to run on the streets of Madrid as there are always lots of people around, even during the daytime. I didn’t want to feel vulnerable whilst stuck in the traffic of people. I enjoyed the sun, and breathed the air; taking strong breaths to fill my lungs. I find that when I go running, I realize what a small part of my lungs I actually use during everyday activity. Shallow breathing is a habit of mine, as I am sure it is for many people. It’s almost like we forget to breathe, and it’s actually quite an effort to fill your lungs with every breath, when you’re not used to doing it.

When I got to the track, I was surprised at how many people were there enjoying their morning exercise. I immediately started to run; making sure I was moving slowly and focusing on keeping my shoulders slightly back and good posture. I was listening to a storytelling podcast though my running earphones. I didn’t pay attention to the noise of the tinnitus in my ear that resounds with increased stubbornness when the sounds of the outside world are blocked by ear phones. I didn’t pay attention to the fact that I could only hear the story in my right ear. I was purely happy. I was running in the sunshine, enjoying listening to stories. I was feeling normal again.

The only time I thought about my hearing loss and the pressure and tinnitus in my ear, was when I actually realized that I hadn’t thought of these problems.  So the only time I thought about these issues was actually thinking about the absence of thinking of them! Exercise is well known to be a distraction from life’s worries. This was my proof. My first time running with unilateral hearing was a success.

I sent my sister a message later that day, telling her about my achievement. She replied and wrote that she was so glad that I had been for a run and that I was ‘getting my Carlyness back’ 🙂

Day four with my new ear

My boyfriend and I had planned to go to Cercedilla, a nearby mountainous town, an hour from Madrid by train. It is a beautiful town surrounded by nature, and is a perfect place for hiking. We were going there for the day to escape the busyness and noise of the city, and to enjoy a gentle walk in the mountains.

It was day four of wearing my hearing aid. I had already tested out my new ear whilst watching television and whilst walking outside. I was going to use this opportunity to try my new ear in some other, more challenging, situations; the Metro and on a train.

The first test was the Metro. I was standing with my boyfriend on the platform waiting for the train to arrive. Since losing the hearing in my left ear, and gaining a sensitivity to sound, the noise of the Metro approaching the platform can feel painful and unpleasant. I can feel it piercing deep inside my ears. Whilst wearing the hearing aid, this uncomfortable feeling was accentuated and my immediate reaction was to try and cover both ears with my hands in an attempt to soften the noise. When the train was approaching, a guy came to ask us for something. He was speaking to us and making animated gestures with his body. The noise of the train and his voice were processed by my hearing aid and were turned into a harsh series of beeps. I couldn’t understand what the person was saying. Every word he spoke made a metallic beeping sound when it reached my new ear. My boyfriend explained later to me that the guy had first spoken in Spanish. My boyfriend hadn’t understood the guy and had told him he was English; he hadn’t wanted to encourage conversation with the seemingly unsavoury character. The guy then replied in English, expressing to my boyfriend that he wanted to go to a café. I hadn’t comprehended any of this small exchange of words. I hadn’t even realized that the unusual character had spoken in two different languages. All the sounds of the Metro station were amplified in my new ear; the bell sound to signal the train approaching and the screeching noise of the decelerating train. My new ear was supposed to be helping me to hear better in the presence of background noise. This was not the case. The amplification of sounds and the accompanied beeping noises were dominating my listening skills, which in turn was distorting and obstructing the understanding of my good ear. Normally, without any hearing aid, I could have moved closer to the guy who came to speak to us and put my good ear next to him. I would have been able to hear some of what he was saying. The hearing aid had actually hindered any chance I had of following the conversation. I felt a momentary sense of deflation crushing me. Confusingly however, I also felt some optimism. Although the metallic noises I was hearing in my new ear weren’t actual words and although they were distorted and difficult, it was still comforting to hear something; anything in my deaf ear.

Whilst sitting on the Metro I also noticed something positive. I was sat next to a girl who was sitting on my deaf side. She was talking to her friend who was standing up next to her. Normally everything would fall into silence on my deaf side on the Metro, and I would be oblivious to the world to the left of me unless I turned my head to see the activity. But this time, with my new ear, I was faintly aware that the two girls were speaking. Although I couldn’t hear any helpful letter sounds or words, I was hearing a slight beep for each syllable they were speaking.

The second test was the train station. On entering the train station I simultaneously entered my bubble of noise. Noises of train announcements and the chatter of people merged together. In large covered spaces with many sources of noise, the sounds seem to bounce off one another and encircle me; forcing me into my bubble. It is a bubble of misunderstanding and bewilderment. It is a bubble of pressure that dominates the inside of my head and ears. It is a bubble of isolation. My new ear was supposed to be helping me to hear better in the presence of background noise. Again, this was not the case.

As to be expected, the train was also bustling with the chatter of adults, and with the weekend excitement of children’s voices. On the train I opened the battery compartment of my hearing aid on my deaf side, so as to stop my new ear picking up the train noise. I decided that I would prefer my left ear to be in its world of deafness; ignorant to the bustle that surrounded it. I played music from my iPod into my good ear. It was a beautiful sunny day. I’d been avoiding wearing earphones. I’d been avoiding music. It had previously felt too intense in my good ear. But on this day, above all the chatter and train noise, it felt amazing to be listening to music in my little world. On this day, although the tests of my new ear had proved somewhat disappointing, my body was showing me that it was starting to adjust to my unilateral hearing. Being able to listen to music for a short time without too much discomfort was a small but wonderful improvement. It was some encouragement. Small triumphs were spurring me on. During the train ride, with my music playing and the sun shining, and with my view of Spanish countryside whizzing past my window, I was holding back little tears of contentment.