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 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 travelling 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 scariest 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 the 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.