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…

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Warning signs?

Following my consultation in London, I took the vasodilators as instructed. These however, made me feel even more light-headed and weak. All my blood tests came back normal with no deficiencies and no evidence of an autoimmune disease.

There is relatively little information on the internet about Cochlear Hydrops; also known as Endolymphatic Hydrops, which is a secondary form of the more documented Meniere’s Disease. I was reading everything I could find about this condition, and was particularly interested in other people’s experiences of it. Often experiences were negative, and the occasional positive ones were stories of how people were noticing a reduction of pressure in their ears, or experiencing less attacks of vertigo (in relation to Meniere’s disease) by cutting out caffeine, alcohol and salt from their diets.

I decided to try eliminating alcohol and caffeine from my diet, and to eat as little salt as possible for a month. After the month I began to introduce things back into my diet to see if they had any effect on the pressure in my ears or the tinnitus. I realized that wine made my tinnitus more loud and lively. However, I was willing to deal with the occasional bout of enraged tinnitus, as I enjoy a glass of wine at the weekends, and especially with a nice meal. My boyfriend reminded me about getting the balance right. OK, I could cut out all these things from my diet, but it there were no real benefits, then why do it? Nobody had given me a definite diagnosis of the cause of my hearing loss or of the Hydrops; if it was in fact Hydrops that I had. Even though the specialist had diagnosed Hydrops, there is no actual test for it: it is a diagnosis based on my symptoms and history that was supported by the results of the electrocochleography (ECoG) test. If I did have Cochlear Hydrops, the specialist had told me that the cause was unknown. I was willing to try things to see if they helped, but I had to be mindful of making sure I wasn’t cutting things out of my diet just for the sake of it. My quality of life was also important. I enjoy coffee on a Sunday morning. I enjoy salty Marmite on toast at the weekend, and I enjoy a glass of wine with spaghetti and pizza. I was already miserable from my sudden hearing loss, why dampen my spirits any more?

As the days and weeks passed, following the ‘diagnosis’ of Cochlear Hydrops, I started to remember events in my life where I had experienced ‘attacks’ of dizziness and tinnitus and fullness in my ears; the main symptoms of this illness. These memories spilled steadily into my thoughts.

There was the memory of collapsing on a flight to Rome, nearly 8 years ago, when I was traveling there with my sister. I had felt a little dizzy and sick, and as I stood up to go to the toilet, my body felt heavy and my legs felt weak, and I fell down to the floor. A few minutes later I found myself sitting at the front of the plane fastened in tightly with a seat belt across both sides of my body; like a child’s car seat. I had vomited, and my sister was with me looking concerned. I felt fine a few hours later, and I put this down to tiredness and the fact that I sometimes have travel sickness. Maybe this had been a sign of Cochlear Hydrops?

There was a time about 10 years ago when I was in a greeting card shop in England. I was on my way out of the shop when my body suddenly started to become really hot. My eyes couldn’t focus and my ears felt stuffy, and I collapsed to the floor. After what I assumed was only a few seconds later, I was able to get up and walk out of the shop and go home. I had consulted my doctor at the time about this, and she had done some blood tests to check my iron levels, but the test results were normal. Maybe this had been a Hydrops attack?

There was even a time around 15 years ago I was walking to university, where I remember feeling overwhelmed by dizziness. My vision was blurring and my hearing became muffled. I fell into a parked car. Also at university, many times sitting in lectures I remember feeling dizzy. It was as though the floor was constantly moving upwards in a curve towards me.  I was having difficulties sleeping at the time, and spoke to my doctor about these things, and assumed these episodes were due to tiredness. Maybe they weren’t due to tiredness; maybe these were the early warning sign of Hydrops?

During the Christmas holidays, 6 years ago, I had 2 ‘attacks’ very close to each other: this was around the same time when my tinnitus (that lasted 3 years) first began. I was extremely stressed in my job and put everything down to stress. I actually thought I was having migraines. I was staying with my sister and her boyfriend, and I was about to make them a lasagna. I reached for a knife and a chopping board, and then all of a sudden everything started to spin and I felt like I was going to vomit. I had to go immediately to lie down. A week or so, just before or just after this attack (I can’t remember), I was staying at my parents’ house, when I experienced the most scary of all ‘attacks’.  I went to the kitchen to make some beans on toast for my sister. Again, I was standing at the kitchen worktop, when I sneezed. At the same time, I felt a twinge in my neck, and then the scariest sensation I have ever felt. I had an awful feeling of dizziness and sickness that came on immediately. My body felt heavy and numb and I felt like things were beyond my reach of control. I vomited and had to go to bed. I slept and slept. Were these Hydrops attacks?

More immediately, last winter, every time I went for a walk in the city, I would feel dizzy and tired and weak.

Was it possible that these were all signs of Cochlear Hydrops?

The specialist in London had said that, the fact that I had tinnitus for three years, was probably a sign of the presence of Cochlear Hydrops. Doctors and physiotherapists at the time had told me that it was a Pulsatile Tinnitus; probably due to an ongoing problem I have with my neck. In actuality, the tinnitus subsided suddenly one day when I had returned home from a run, and stretched my neck really far to the right (the opposite direction of ear with the tinnitus – my now deaf ear). Hence, a problem with my neck, being the cause of my tinnitus, seemed very plausible.

Maybe these were all warning signs? Maybe my body had been trying to warn me for years that I would finally experience the sudden hearing loss in my left ear? But maybe not. I still didn’t have any definite information regarding a cause of my hearing loss. I wanted to keep trying to find the reason for my hearing loss. For peace of mind, if there was something I could do to prevent any further damage happening, in order to protect my right ear – my only hearing ear – then I wanted to know what I needed to do.

A second opinion (and lots of medical terminology)

It was early in the new year, and my boyfriend and I had traveled to London for a second opinion about my condition. We arrived at the Ears Nose and Throat clinic, and were asked to complete a basic information form and to wait in the waiting room. The waiting room was enormous. There were plush sofas around the perimeter, and an elaborately decorated Christmas tree that dominated one side of the room. At the end of the room on the left, was a drinks machine that served all types of teas and coffees; all free of charge. We had done our research to find a specialist with lots of experience and with expertise in some of the issues I had been having. We were hoping to gain some more information and some understanding regarding my hearing loss.

When we first met the specialist, my immediate thought was that he looked older than the photo on the clinic’s web-page. He was smartly dressed; wearing a dark suit jacket, white shirt and a tie. His hair was dark with a generous scattering of flicks of silvery grey; additions to his jet black hair that had not been captured in his professional photo. As we entered the consultation room, he greeted us by shaking our hands. He dropped his pen as he walked towards his desk, and stooped down to pick it up. He had the slightly awkward air of a genius. He immediately starting asking questions and scribbling down information on his notepad. He was eager to see some previous medical notes, and grabbed at what I had brought. He continued to scribble down information. Whilst writing, he kept looking up at my face, and commented more than once telling me that he thought I was very pale. He had the nature of an accomplished professional, who seemed to be trying to find an answer to my problem, at an accelerating pace.

He started with some unusual tests. He asked me to stand up and I accompanied him to the corner of the room. He commented on my size saying, ‘there wasn’t much of me’. I was asked to walk in a straight line; stand still and balance; and to close my eye, put my hands together in front of me and march on the spot. When he asked me to stop marching, I opened my eyes and found that I was no longer looking at the same part of the wall as when I had started marching; I had rotated about 45 degrees. My boyfriend found this amusing. This test showed that I was somewhat off-balance. He also asked me to sit down and look him in the eyes, as he flung me from side to side. He asked me to lie down on a chair in a small room that was attached to the main consultation room, and again I had to look at the bridge of his nose as he flung me from side to side. This left me quite dizzy, and when he let go of me I swayed slightly to the left. Next I went to have some hearing tests. These were the usual tests that I had done so many times, and also tests of the middle ear, including a tympanometry and Eustachian tube function test.

After a short wait, we went back into the consultation room. The doctor told me directly, that I had lost 90 percent of the hearing in my left ear. He told me that there was also a small hearing loss in my right ear. There was also evidence of significant inefficient Eustachian tubal function in both ears; marked on the right side.  I had never been told so clearly the extent of my hearing loss, although I was very aware that it was severe. Nobody had told me that I also had a hearing loss in my right ear, and this came as a shock to me. He said that as the hearing loss in my left ear was so severe, it would be unlikely that a hearing aid would help me. This was disheartening. The specialists in Spain had given me some hope regarding some kind of aid. I appreciated this specialist’s candidness, even if it was difficult to receive this information. He then commented again about the paleness of my skin. He recommended that I get my Vitamin D levels checked, along with some other blood tests. I said ‘yes’ to all of his suggestions. He also suggested that I carry out a speech discrimination test of my (good) right ear, to see how well I understand speech.

I had my blood taken. Soon after, I was sitting back in the hearing test room, listening to an audio of someone saying words at different volumes. All I had to do what say what I could hear. It reminded me of a test teachers might give to young children or to children who are learning English as a second language. I found this test OK, until the quiet level, where I ended up saying word endings or just a single letter-sound that I could distinguish in the words. Everything happened at such a fast pace.

Then the specialist told me that he recommended me to have an Electrocochleography (ECoG) test of my (good) right ear. This test measures the electrical potentials generated in the cochlea—a part of the inner ear—in response to sound stimulation. He wanted to see if the test would show any evidence for the reason of the small loss of hearing I had in this ear. He stressed the importance of taking care of my right ear – my only hearing ear. So he squeezed anesthetic cream into my ear and we went downstairs to the waiting room for about half an hour while my ear became numb. Yet again, I had electrode pads stuck to my head. He rubbed my forehead harshly with the sandpaper, and was surprised at the sensitivity of my skin. I then lay back on the chair and I was attached by the electrode pads to the computer. An electrode was also fed deep into my good ear. Yet again I had the same feeling as when I had the steroid injections: the scratchy discomfort, deep in my ear and in the back of my throat. Yet again, a series of clicks were played into my ear.

The specialist explained the results of this test. He told me I had a form of a condition called endolymphatic hydrops in my (good) right ear. Endolymphatic hydrops (also known as Cochlear hydrops) is thought to be an early form of Ménière’s disease. Basically, it is a problem with the fluid in the inner ear. This diagnosis explained the pressure and feeling of fullness in my ears; the tinnitus; the hearing loss; and dizziness I had been experiencing. The specialist thought it was likely that the hydrops was also the underlying pathology affecting my left ear six years ago, when I had begun to experience tinnitus that had lasted three years. He felt I had probably had Cochlear hydrops in my left ear all these years, and it had subsequently resulted in my sudden sensorineural hearing loss.

After five hours of tests and consultations, we had a lot more information and a bit of a plan. I was to wait for the blood test results. I was going to take some more strong antiviral medication for 5 days, in case of the hearing loss being a result of a virus. After completing the anti-viral medication I was then to start inner ear vasodilator treatment by taking a medicine called Serc 16mg, for 4 weeks, to see if this had any effect on reducing the pressure in my ears.