Some Kind of Vestibular Disorder 

With a lack of coordination-control and a pounding head, I feel both drunk and hungover. I’m walking on sand, sinking with every step.

Image by Pete Linforth from Pixabay

It’s Sunday afternoon. I’m lying on the sofa, a cushion between my knees. The culmination of pressure in my head and ears commands my attention. I feel as though I’m continually falling. I can’t rely on my legs to keep my balance. I’m dizzy. The force inside my head is making my eyes water.

I’m trying to focus my gaze. The small fan is rotating slowly; every few seconds it blows in the direction of the table making the tassels of the table runner dance in the soothing breeze. The window shutters are closed, keeping out the strength of the brightness from outside. 

Around the corner from where I am lying, is my boyfriend who is in the kitchen, preparing food. I know it’s scary for him too – the unpredictable nature of this condition. The extractor fan whirrs tiredly amidst the muffled tap of the wooden spatula on the frying pan. There’s a soft hum of the radio and the smell of onions softening. 

I’m frustrated. Trapped. I try to convince myself better, to think myself OK. It doesn’t work. My tinnitus squeals with more intensity than the usual soundtrack to my days. I want to be better. I’m so angry with this condition. When it decides to strike there’s no fighting it. Fighting will only aggravate it. I have to wait it out. 

I remind myself to make sure I focus on the good days, to seize and enjoy them. But, on days like this, I have to let it win. I can’t beat it, I can only manage it with acceptance and with obedient patience.


In a dark and quiet room, there is no peace. High-pitched sparks are flying like shooting stars in my head. It feels like foam insulation – the type that builders use – has been sprayed into my left ear and is quickly expanding inside my skull, my jaw, my neck. Like an arm wrestle in stalemate, a band tightens around my head pushing against the strength of the packing. The pillow hurts my head when lying down. Sitting up, my head feels so painfully heavy.

The boat is more rocky than usual. The world seems to be spinning faster or has it slowed down? My arms and legs feel weak and loose. Simple coordination tasks demand a disproportionate amount of concentration. With a lack of coordination-control and a pounding head, I feel both drunk and hungover. I’m walking on sand, sinking with every step.

I’m looking through thunder clouds full of murky unclear pressure. Lights cause pain behind my eyes and it’s difficult to focus.

My body is on high alert. I’m more sensitive, nervy, jumpy. Even the smallest of noises make my heart tingle with nervousness. My energy is draining by the second. My thoughts are muddled, jumbled.

I’m trying to be patient, waiting for it to pass; trying not to feel guilty for not doing the things I wanted to, for not being productive. I don’t feel how I used to. I don’t feel like myself. I don’t want to be this person. This isn’t who I am. This isn’t who I’m supposed to be.

Diagnoses are ever-changing, multiplying and evolving with every new symptom.

Whether it’s days or weeks, this time, until the symptoms fade back to a low rumble, I know I will get through this.

 

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My New Nose

Last year, on Valentine’s Day, I had my septoplasty. I had a deviated septum, which veered to the left; my deaf side. For as long as I could remember, I had been unable to breathe through my left nostril – something I hadn’t paid much regard to until my hearing loss and the onset of the associated feeling of pressure in my ears and head.

The pressure is often the most difficult symptom to manage. It is more prominent than my tinnitus. It is ever-present, unlike my sound sensitivity for which the degree of severity is dependent on environmental sounds. With more pressure in my ears comes more dizziness. I would try almost anything to help relieve some of this discomfort as it is extremely hard to disconnect from.

Following a consultation with a particular specialist, in which he stated with confidence that the reason for the feeling of pressure in my ears was because I couldn’t breathe properly, I had elected to have the septoplasty operation. Not all specialists had given me this opinion, and so I tried not to get my hopes up regarding an improvement in my ear discomfort. The straightening of my nasal septum would enable airflow through both nostrils which, at the very least, I hoped would help me sleep better. I also had a faint hope that it could result in a reduction in the feeling of pressure in my ears and head.

The outcome of the surgery wasn’t quite what I had hoped for. The operation had been a success in that my septum was now straight. However, although I was now able to breathe air ‘out’ of the left side, I was unable to inhale. Unfortunately, the nasal valve on the left side of my nose collapsed following the surgery. This meant that every time I tried to breathe air in, the weakened side of my left nostril caved into the nasal passage; blocking the airflow. If I wore a nasal dilator strip, which I opted for during the night, I was able to breathe through both nostrils. But, as soon as the strip was removed, my nasal valve collapsed again. And so, after my septoplasty, I was still unable to breathe naturally through my left nostril and for this reason, the operation also had no impact on my associated ear symptoms.

This year I was offered another procedure to help me breathe, and of course, I agreed to it. The surgery would involve reshaping my nose to correct my breathing problem. I still refused to give up hope for having the minimum comfort of being able to breathe properly. Moreover, I retained my guarded hope for some relief from the persistent ear pressure. 

I spent the weeks leading up to my surgery exploring how my new nose would feel. To simulate my anticipated, improved breathing function I would press my left index finger on a patch of skin next to the left side of my nose and pull the skin away from my nose gently; opening up my airways. The feeling of breathing through both nostrils was wonderful and the pressure around my nose was clearly reduced. I ignored the confused and sometimes disturbed looks passers-by would give me and I’d smile with delight at the thought of this extraordinarily oxygenated state could soon be my new ‘normal’.

I had the open rhinoplasty surgery six days ago and am recovering well. The operation experience was very similar to my septoplasty. I awoke from the anaesthesia with my nostrils full of packing. There was gauze taped under my nose to catch the blood that steadily drained for the next couple of days. The first two days were predictably the most difficult. I was in a significant amount of pain, and it was very uncomfortable trying to eat or drink anything with my nose blocked with dressings. When I returned to the hospital 2 days following the surgery, the specialist removed the nasal packing and I immediately felt a lot more comfortable and had some marvellous breaths of air through both nostrils. On leaving the hospital I felt quite lightheaded from all the air I was able to breathe.

Recovery will take time and patience. My nose is full of stitches and is very sore. My face is bruised and swollen and at present, I resemble an old bruised potato. My nose is currently congested due to swelling, and I am not allowed to blow it, so it feels like I have a very bad cold. But, I am hopeful for some more wonderful full breaths of fresh air. I am hopeful for better sleep. And, I am still holding on to my most cautious of hopes; for some reduction in the constant feeling of pressure.

…I also wonder what my new nose will look like.

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 at 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 to 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…

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 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.