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.

My new ear

A week later I returned to the private hearing healthcare centre to receive my Contra Lateral Routing of Signal (CROS) hearing aid; my new ear!

The audiologist came to greet me, and she took me into the room with the desk, where I had previously had my consultation the week before. She introduced me to another man who was going to be my translator. On meeting him, I did not feel the immediate sense of trust, or reassurance that I had felt with my previous translator. I asked him if he would like to sit down next to me, and he declined; choosing to spend the entire time standing up near the door, where he paced around a small area of floor, occasionally pausing to lean against the wall.

Immediately I was shown the hearing aid. The CROS hearing aid helps one ear, yet comes in two small parts: a single microphone and a single receiver contained in two individual devices. They were the sandy brown colour I had chosen with the guidance of the audiologist. They were very small with clear little tubes and buds on either end to fit into my ear. The first thing the audiologist showed me to do, was how to insert the batteries. She opened a small compartment, pulling gently at the bottom of the aid, and carefully placed in the circular battery. She peeled off the protective sticker that was covering the battery and told me that as soon as the paper was off, the battery would start to use power. I then took the other hearing aid to insert the battery, and copied her demonstration carefully. She told me to open the battery compartment when I take the aids out at bedtime, so as to reduce the power drainage. She fitted them both into my ears, and they were connected to wires and her computer. She then played sounds into my good ear and I had to do the usual test of putting up my hand when I could hear the beeps. Then she did the test of my deaf ear. There was a constant noise that sounded like a fan in the room coming from somewhere I couldn’t identify, and also background noise of people talking outside. It was difficult to focus. I could hear some of the beeps. I occasionally put my hand up when I thought I could hear something but wasn’t sure; due to the background noise distractions. But I could hear some quiet beeps, which was an improvement. She asked me how the hearing aids felt, and I told her that the sounds seemed to be a little too loud. She adjusted the program on the computer and the volume of the hearing aids reduced.

The audiologist then challenged me to insert the aids into my ears, without help, and she handed me a mirror. The right hearing device fitted easily into my ear. The left side however proved much more difficult. Since losing my hearing I have noticed a change in the shape of my left ear. If I put my finger in my ear as far as the little piece of cartilage that covers the entrance to my auditory canal, it feels as though the bony floor of my ear is raised. Hence the small hole that leads to the rest of my ear seems very much reduced in size. I used to wear foam ear plugs in my ears at night to sleep with, as I am a very light sleeper. The ear plugs used to mould and fit easily into my ears, and would stay in place all night. Now, when I try to put a plug into my deaf ear, it is difficult to find a successful position to insert it, and it almost always very quickly pops back out. I failed twice at trying to fit the ear mould of the hearing aid into my left ear. My ear was now red and my hands were shaking nervously as the audiologist and translator watched me intently. I figured out that I had to push the fitting down and then upwards whilst twisting it at the same time, to make sure it was fitted correctly inside my ear. When fitted, the hearing aids could hardly be seen, and the audiologist told me they were invisible.

The translator asked me how I had lost my hearing, and I told my story yet again. He asked the usual questions: Why did it happen? Was I receiving treatment for the pressure? How long ago did it happen? He asked me what my expectations were of the hearing aid: When are my difficult times? How do I think the hearing aid could help me? He commented on how I wasn’t a ‘typical’ customer, who he described as old, with some hearing loss in both ears. He kept telling me to not expect too much. I know that it would have been unprofessional of him to raise my hopes, but he was doing the opposite. He was making me feel naïve in my understanding of  the magnitude of my situation. I wonder if he realised how far I had come in my story. I wonder if he realised how much effort and courage it had taken to walk into the audiologists, make the appointment and talk yet again about what had happened; all in a foreign language… and still keep a smile on my face whilst speaking to them.

With my hearing aids in place, I said my goodbyes and thanked the audiologist and translator for their help. I was to contact my audiologist if I had any questions or needed any help with anything. My next appointment would be in a months time. I was to use the hearing aids for 2 or 3 hours each day for the first week, unless they felt OK, in which case it was fine to wear them all the time through the day.

I left feeling less optimistic than after my first appointment, but I was still hopeful.

The walk home was a noisy adventure. The beep of the traffic lights sounded uncomfortable and distorted. I walked past a big group of students who were all talking and who sounded like screeching bells. At that point I remembered what an old friend of mine told me when he first received his cochlear implant. He told me that the chirping of birds sounded like bells, and the noise of peoples voices sounded like Mickey Mouse. I knew this wasn’t exactly the same type of circumstance, but it was similar. I was sure it would take time to adjust to the new types of sounds I was hearing through the hearing aid. I spent my time on the walk home, pressing the volume button up and down to see which level felt most comfortable.

When I arrived home I didn’t really know what to do with myself. I think I was feeling a little bit in shock. I was also feeling some disappointment due to the fact that the sounds from the aids were making me feel very uncomfortable. I was scared they weren’t going to help me. I was still hopeful though. I was home alone, and wanted to test my new ear by talking to someone.  I kept trying to test the hearing aids out. I clicked my fingers near to my ear, but couldn’t hear the sound. Then I tried playing a YouTube song on my phone – Don’t Think Twice Its Alright, Bob Dylan – holding it to my deaf ear, as if it was a phone call. I could hear some of the song, but I wasn’t sure which ear I was hearing it in though. I wanted someone to call me on my phone to try out my new ear. I waited for my boyfriend to return home from work, eager to have a conversation with him.

Testing and Hope

Less than a week following my consultation with the new specialist, I went to meet with a private hearing healthcare professional to discuss hearing aid options. When I’d made my appointment I had asked if there was anyone who spoke English. My hearing loss in itself has brought communication difficulties. Trying to manage it and to make advances with consultations in a second language has added extra challenge; an extra layer to tackle and deal with. The receptionist said she only spoke a little English. I wasn’t sure if I had managed to convey my question clearly as to whether there was an audiologist who I could consult with in English; not whether she, the receptionist, spoke English. Of course I am trying to learn Spanish, and always try to communicate with people in shops, restaurants and cafes in Spanish. But when discussing something as important as my health, and what could possibly also be a big investment (hearing aids can be very expensive), I wanted to make sure I had optimum chance of comprehension and the ability to ask questions and to communicate my needs and feelings successfully.

I arrived alone and very nervous. Not only was I anxious at the prospect of yet again trying to convey, in Spanish, the fact that I had ‘suddenly’ lost my hearing in my left ear, but also because this was the first step to a possible big change in the way I live my life. I was admitting to myself, and making peace with the fact, that I wasn’t going to be able to hear again in my left ear. I hoped to gain some support. I hoped to gain some closure. I was also putting myself again, in the vulnerable position to perhaps be told that there would be nothing I could try that could help.

I sat in the waiting room, for about 5 minutes, and then was greeted by a friendly looking Spanish woman in a white jacket who said ‘hello’ to me in unconfident-sounding English. A man followed the woman, and he shook my hand and greeted me with a much more comfortable version of ‘hello’.

I was led directly into a hearing testing booth. The woman who I assumed was the audiologist, went through the door to the other side of the booth, and sat opposite me; observing me through a transparent screen. The man came into the room with me and began to explain the procedure in English. I was incredibly relieved – this man was here solely to translate for me. He explained that they were going to do different hearing tests to see if there was any type of hearing device that could help me. The man then joined the woman on the other side of the glass. Next proceeded a series of different tests.

I carried out the usual Pure Tone Audiometry hearing test; raising my hand every time I heard the ‘beep’ sound in my hearing ear. The man gave me a thumbs-up gesture after my first test – the testing of my right ear. Then they tested the left (deaf) ear. As usual they had to play the sound of wind into my good ear, whilst testing the deaf ear. My head was conducting the sound. My good ear could hear the sound that was being played into my bad ear, when there was sound played at loud levels.  The wind noise was to distract my good ear from hearing the sound and confusing the results of my left ear. As usual I could only hear a few beeps. They then carried out the Bone Conduction test. This tests how well sounds transmitted through the bone are heard. As usual, I could not hear anything for this test, in my left ear. Next they did a Loudness Discomfort test. For this test, the audiologist played increasingly loud sounds into my ear, and I had to say when the sound was uncomfortable. I was glad they were carrying out this test; one which I hadn’t previously done. I had been struggling with everyday sounds, and my tolerance of noise, especially when loud, was noticeably lower than before I lost my hearing. I guess it is important for audiologists to perform this test when deciding on appropriate hearing aids: since hearing aids amplify sound, the audiologists need to ensure this sound is within the comfortable range for their customers. Next they performed a Word Recognition test which tested my ability to correctly repeat back words at a comfortable loudness level. The audiologist said words and I had to repeat them. The words were in Spanish, and I joked that it was like a Spanish language test. They assured me jokingly that I wouldn’t be marked on pronunciation. I carried out the test, in a language that I am still learning; I struggled with the rolling of my r’s for some of the words.  My right ear seemed to cope with this test with ease. My left ear struggled. All I heard in my left ear were some distorted noises; high pitched and mostly two syllables.  I couldn’t relate the noises to letter sounds or words. I couldn’t verbally make the strange noises I was hearing. I just shook my head after each distorted word. Then the audiologist changed a setting, and I could hear every word she said in my left ear! It was an extremely painful level of loudness and seemed high pitched. But I could hear, and this was amazing! I was hearing words! Brimming with emotion, I repeated back, in my best Spanish, the words she was saying. The audiologist and translator spoke to me through the glass about how the audible sound in my left ear felt. I told them that it was wonderful to be able to hear, but that it was very uncomfortable.

Next we went into a room with a desk, and the audiologist and translator spoke to me about what they thought would be my best option. The audiologist told me that the only option she thought that would work for me would be a Signia Siemans Pure Contra Lateral Routing of Signal (CROS) hearing aid.  I was told that as there was only the tiniest bit of hearing in my left ear, they couldn’t promise it would be a great help. But they said they might be able to get me 30 percent hearing…maybe 40 percent. The main benefit would be that I would have more chance of being able to hear better in background noise. Using this technology, a hearing aid-like device on my deaf side would use its microphone to pick up sound from that side and send it to another instrument at the better ear; wirelessly via bluetooth. The sound would then be introduced into the good ear. Wow! It sounded perfect! They showed me an app I could get on my phone that I could use to change the settings. If I was in a restaurant I could make the microphone focus on where the people were sitting, e.g. if they were positioned in front of me, I could press the corresponding areas of a diagram on my phone, and the microphone would focus on these areas. There was a setting for music. If I wanted to go to a live music show, I could press a button and it would pick up the music in surround sound. I told them I would like to try the device, and they asked me what colour I’d like. I hadn’t even thought of this! I asked the audiologists opinion, and she suggested one that matched my hair colour.

I had moulds taken of my ear and was given an appointment for a week later, where they would fit the hearing aid and show me how it works. I would be trying to use it for an hour or so each day, and then increase the time every day, and would have regular updates with the audiologist.

Finally, some hope.

 

A consultation with the new specialist

Nearly six months after my sudden hearing loss I was in my Spanish hospital with my boyfriend, yet again for another consultation.

When I first entered the consultation room, I was dismayed to see yet another Ears Nose and Throat (ENT) specialist whom I hadn’t previously met. It was a specialist who was not aware of my story and who I skeptically assumed was going to ask me to repeat my story yet again, and then tell me that he was sorry, but due to lack of research on my condition, he would be unable to offer me any further help and that he would see me again in three months to see if there were any changes.

Before meeting with the new specialist I had carried out the usual hearing tests. As usual I was told that nothing had improved. The specialist had a friendly and sensitive manner. He asked me about how my hearing loss had occurred and whether I had previously had any ear related problems. Then he looked at my hospital notes and told me that my MRI scan was normal. This was probably about the third time I’d been told this information. He said there was some ‘shading’ in an area of the image, but I didn’t hear the rest of what he said, and he didn’t seem to speak about it with any importance. Then he looked at my results from my Brainstem Auditory Evoked Potentials test. He proceeded to explain to me what the results showed. This was the first time the results had been discussed with me in any more detail than just telling me that they showed the same as my hearing test – that I can’t hear in my left ear. He drew a diagram of the ear and showed how each peak on the graph produced from the test, related to different parts of my ear. The results showed that sounds weren’t being heard because sound wasn’t successfully reaching my ‘caracol’. In Spanish they call the spiral shaped part of the inner ear known as the cochlea the ‘caracol’; which translates as snail shell. So for some unknown reason, sounds weren’t able to be interpreted by way of my cochlea, and hence the relevant signals needed to hear, weren’t being sent to my brain.

The new specialist read my notes from the ENT doctor with whom I had consulted a month earlier in London. He didn’t agree with the diagnosis of Cochlear Hydrops as being the reason for my hearing loss. He explained to me that this is usually a condition that is not continuous and comes in episodes. Although I have the symptoms, mine are continuous, not sporadic. I continuously have pressure in my left ear. I am continuously deaf in this ear. My hearing doesn’t fluctuate. He told me however, that ultimately the diagnosis isn’t that relevant, as the main point of importance was now finding ways to help make things more bearable for me.

The new specialist then surprised me by asking me about how I was coping. I told him that the insistent pressure in my left ear was very uncomfortable. I told him that going outside into the noises of the city was also very uncomfortable and a habitual challenge for me. He commented in English and said that, “This kind of thing can make you crazy.” He told me and my boyfriend that I ‘have to be strong’. I told him that I know my situation could make someone crazy. I told him that I know I need to be strong. I told him though, in a friendly tone; appreciative of his even mentioning of these issues. This was the first time any hospital specialist had shown any understanding or even alluded to the difficulties I was facing with the everyday. He asked me about my work. I told him I was not currently at work due to my hearing loss. He asked me why. I told him that I was a teacher and that I worked with very young children. I explained the difficulties I had when I tried to return immediately to the classroom, when I first lost my hearing. I asked him whether he thought I would be able to go back to my teaching job. He said he thought I could try. He told me that everything will take time. I needed to adjust. He said that I am still relatively in the early stages of learning how to live with unilateral hearing. He stressed the importance of trying to return to my normal life and routine. When I told him how young the children were that I teach, he added, “It will be very difficult for you though.”

Then the new specialist widened the scope of his investigations. He asked questions about my kidney. I only have one kidney on my right side. He told me that hearing problems and kidney issues can be directly related, as the kidneys regulate the fluid in the body. My hearing loss was possibly an issue with the fluid in my inner ear. Often people with fluid problems in their ears are given diuretics to force the kidneys to excrete more salt in the urine. He was keen to try this measure, as the diuretics could possibly help with my ear pressure. However, he wanted to check first that it was safe to prescribe me diuretics. So he made an appointment for me to have a consultation with a nephrologist (kidney specialist).

He also asked about my jaw. Oh my goodness, I couldn’t believe it! From the very first moment I entered the hospital, at the start of my story, I had been asking the hospital doctors if the problems I have with my jaw could be contributing to the problem in my ear. I had been constantly told that there was ‘probably’ not a connection. This time I hadn’t even mentioned my jaw. The new specialist had asked me the question! He said that my jaw problems could also be a cause of pressure in my head and my ear, and hence could be making my condition worse. So he made an appointment for me to see a maxillofacial doctor (specialist of the head, neck, face and jaw).

He suggested I go to a private audiologist to discuss hearing aid options and ways of helping with my discomfort. He said that there were four options that could be worth trying:

  1. Wear a normal hearing aid in my deaf ear to try and amplify the sound to a level that might help to give me some hearing. It probably wouldn’t be a useful level of hearing, but it might help with the feeling of disorientation, tinnitus and pressure in my ear.
  2. If the first option didn’t work, then I could try a Contralateral Routing Of Signals (CROS) hearing aid. This type of hearing aid would take sound from the deaf ear and transmit it to the ear with better hearing. This could help me hear better in background noise.
  3. If the CROS hearing aid didn’t work, then there was an aid called a Bone Anchored Hearing Aid (BAHA). Having a BAHA would involve an operation where they attach a hearing aid on to a bone near the ear and it would pick up sound vibrations – this would obviously be a more invasive measure.
  4. There was also a device that could ‘mask’ tinnitus sounds in my deaf ear. This would play sound, or noises, or music, into the bad ear. Although I wouldn’t be able to hear the sounds, it could help with my tinnitus.

It was so refreshing to speak with someone who was curious about the other issues affecting my ear, and who seemed to genuinely want to help. Maybe this is the same treatment I would have received from any of the other ENT specialists at this point in my story; now that immediate treatment had been administered; now that we had waited for six months; and now that acoustic neuroma,  stroke, or an autoimmune disease had been discounted. Even so, this specialist had shown a deep understanding of the day-to-day issues I was facing. He knew about and acknowledged that I would be having some difficult days. This comforted me. I wasn’t being weak or over-accentuating my difficulties.  What I was going through was hard. It was supposed to be hard. I was dealing with it. I was having good days and difficult days. This was normal. Also, he explained things in so much detail, and had given us suggestions for further actions. I was incredibly grateful to have consulted with him. I now had a new plan with many elements, and I would be seeing him again in a month to discuss any new findings.

This time when leaving the hospital I didn’t cry. I walked out of the hospital with my boyfriend, breathed the fresh air, and was full of positivity.

The Versatile Blogger Award – Thank you!

Thank you so much to Mich at michnavs for nominating me for this award. It is so nice to be thought of by fellow bloggers 🙂  Mich’s blog is all about ‘Celebrating life in rhythm and rhyme’. On Mich’s blog page, you will find lots of beautifully written poetry about life, love, the seasons, celebrations and more. Please take time to visit Mich’s blog!

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Here are 7 facts about me…

  1. I love Thai food, especially the green papaya salad known as Som Tum: with “som” meaning “sour” and “tum” referring to the pounding sound of the large pestle used to crush ingredients. I like it spicy and with lots of lime and garlic, and served with sticky rice.
  2. Next week I am traveling to England to spend a few days with my sister and her boyfriend. I am so excited to see them both!
  3. It’s my birthday this Friday – 35 here I come!!
  4. I hate hard boiled eggs – the shell, the smell, the texture….urghh!!
  5. I really don’t like cockroaches – something about the higgledy-piggledy, super-fast way they can move!
  6. I recently did a bloggers interview with Jacqueline from A Cooking Pot and Twisted Tales. I have nominated her before for an award, so I will say it in this section: please visit her blog! She has a wonderful blog, where she posts stories, photos and poetry. She is great at getting people together in the blogging world, and it is through Jacqueline that I have connected with some other fantastic bloggers. Here’s a link to my interview with her: https://acookingpotandtwistedtales.com/2017/04/02/meet-beautiful-lady-carly-sygrove/
  7. I love the sun. Waking up to a sunny morning makes me immediately feel happy 🙂

Nominees: (If you have already been nominated already or do not have the time no worries at all. I don’t want anyone to feel they have to complete this task. I really just want to say you’re amazing!)

 

1. Wendy at picnic with ants

Wendy has provided me with a lot of information about Meniere’s disease, and often leaves positive and informative comments on my posts. Thank you Wendy 🙂

2. Sarah at Embrace Joy

I find Sarah’s story really interesting. She is originally from Indiana, and has traveled a lot. Recently, she has been living in a city in the north of England called York; very close to where I grew up.

3. Al at The Cvillean,

I met Al through both having experienced unusual forms of hearing loss. I really like his sense of humour and I enjoy reading about his life.

4. Miriam at The Showers of Blessing 

Miriam writes poetry and quotes, and also posts beautiful photos. Miriam often comments on my posts – thank you Miriam!

5. My beautiful blogging friend Susan at Rhythm in life

I love her poetry about her family and her life ❤

 

The Rules:

  • Thank the person that nominated you and leave a link to their blog
  • Post about the award
  • Share 7 facts about yourself
  • Nominate some of your favourite bloggers
  • Tell your nominees the good news!

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