Consider these my blog archives, if you like.
To have started this journal three years ago would have been too painful. My ‘survival technique’ was to focus on the future and not dwell too much on what was happening. To remember these troubled times is painful, even now. But I know there are others seeking similar stories to theirs, so here is mine. If it helps even one other person out there, then it’ll have been worth documenting.
February 2007 – October 2008
In February 2007, I came down with a strange sinus infection accompanied by tinnitus (constant ringing / roaring sounds in the ears) and severe vertigo attacks. Rooms would spin from left-to-right and the constant nausea was so severe that there were days when I couldn’t even keep down ice blocks. I lost most of the hearing in my right ear. Three months later, I lost all of my hearing in the left ear.
It was first diagnosed as an inner ear infection, then viral labyrinthitis, then SSNHL (Sudden Sensorineural Hearing Loss), then Meniere’s Disease, then We Just Don’t Know, until almost two years later, when it was identified as AIED (Autoimmune Inner Ear Disease).
But while the diagnosis was uncertain, for those first two years, the treatment was also all over the place. At one stage I was given a diuretic. At other times I used combinations of Serc and Stemetil to control the dizziness (without success). But the only drug that seemed to work was Prednisone (steroids) and only while I was on it.
Prednisone is not the safest drug to be on for long periods of time, as I would later learn the hard way. For the most part, I was on two or three-week courses of it.
The treatment had to be started immediately for it to be effective. My first course was commenced after I lost all hearing in the left ear, for example. Because it had been three months since I’d lost hearing in the right, it was too late to save that one. But it brought the hearing in my left back to about 90%, and stopped the right one (around 40%) from deteriorating any further. It also stopped the vertigo.
While I was on it.
As soon as I finished the course of Prednisone, it would start all over again. Maybe the next day. Maybe the next week. Once I was lucky and had six months of Prednisone freedom.
The sudden drops in hearing would often happen overnight, so I started dreading going to sleep at night for fear of how I’d wake up in the morning. Sure enough, I would often awake to a spinning room and a silent world (apart from the roaring tinnitus). At other times, I’d awake to a ‘good hearing day’ only to find that the hearing in one ear would completely disappear later that afternoon, sometimes mid-conversation. If it happened to the right ear, the ‘bad ear’, I could get by. But every time it happened to my left ear, the ‘good ear’, I would become quite suddenly deaf again. Quite often, these hearing fluctuations were accompanied by vertigo attacks. The more severe the drop in hearing, the more severe the vertigo was.
The hearing would usually come back on its own – sometimes after an hour or so, sometimes by the next day. If it took any longer than that, I’d go back to the emergency department at the Eye and Ear Hospital
Without a diagnosis, and with a seemingly reliable medication to fix the sudden losses, I was a psychological mess during 2007–2008 because I never accepted my hearing loss. I was terrified of going deaf, but the ENTs couldn’t predict the outcome for me so perhaps it might not happen. Especially because steroids could obviously cure it, albeit temporarily. So I never bothered telling most people I was hearing impaired because quite often, I wasn’t! I had good days and bad days. The anguish that I felt on those ‘bad days’ though, every time I had to cope with a sudden hearing loss again, could perhaps have been avoided if I stopped relying on the temporary ‘magic’ of Prednisone, and let my hearing lapse from the start.
November 2008 – February 2009
In November 2008, I saw a different ENT about the condition and he turned my life around medically and emotionally.
From a medical perspective, he recognised the problem as being an issue with the cochlea (though he did send me off for a second MRI to rule out an issue with the brain, just in case). He declared the condition an ‘autoimmune condition’ and, in his own time, researched various Rheumatologists around the state in order to find one who had experience with ear conditions. Once he’d found ‘my guy’, he also called in a favour to get me an appointment with him as soon as possible. The next thing he did was refer me to an audiologist, for a hearing aid fitting. He explained that digital aids have volume switches that would be a great help to me during the hearing fluctuations. That would then relieve some of the stress I felt during the ‘silent’ days.
From an emotional perspective, he told me straight out that I was likely to lose all my hearing. Autoimmune conditions are brutal like that. But, would I have to live my life as a deaf person? No. He went on to tell me about the cochlear implant and why it was likely to be effective for someone in my situation.
I walked away from his office that day a different person. A stronger one. I felt a sense of tranquility that had been missing for a very long time. I now had a diagnosis, and could accept that my hearing loss was permanent. After that, I stopped trying to hide my hearing loss, and everyone’s support made my day-to-day life easier. Especially at work. I felt I could deal with my loss because there was a solution out there. There was no cure for deafness, I understood that. But at least there was something out there that meant my world might not become permanently silent. He’d given me hope.
My husband will never forget the smile on my face when the audiologist turned on my right hearing aid. The sheer joy at being able to hear sounds again, and understand speech again, was unforgettable. (In that respect, I have sort of already had a glimpse of what the CI switch-on day is going to be like!)
The left hearing aid? It never really produced anything more than a crackle. The hearing had deteriorated to a point at which a hearing aid was completely ineffective. There were no sounds left to amplify.
The Rheumatologist prescribed a very high dose of steroids, higher than any dose I’d ever taken before. I’d had such positive results with them in the past, that we thought it might be possible to bring the hearing of the left side back to a point at which the hearing aid could help me. Since autoimmune conditions tend to present in clusters, he also prescribed a drug called Azathioprine, which I’d have to take for the next six months. This, like the steroids, was an immune suppressant, to stop my body further turning in on itself. It was hoped that at the end of the six months, any further ‘autoimmune’ conditions would be in remission.
The Prednisone didn’t work for the left ear, so that hearing aid never gave me more than a crackle. But I took great comfort in that little crackle for a while! It helped me determine what direction sounds came from.
It looked like I was going to be trapped into taking the Prednisone for a very long time though. This is a dangerous drug to stop very suddenly, so the dose must be gently decreased. Because I’d started on such a high dose, there was no way to speed up this process. This was really frustrating because I was stuck taking something that was having no improvement on my hearing, and was causing a host of other side effects: sleepless nights, digestive problems, weight gain, the infamous ‘moon face’ look, mood swings, dry mouth, etc. There was one bonus though: hearing in the right ear was at least stable, and I never felt dizzy or had any vertigo attacks.
February 2009 – March 2009
In February 2009, still on fairly high doses of steroids, the ‘dry mouth’ side effect got a bit much. I started relying on fluids to keep it as moist as possible, but it was really sore and scratchy. It hurt to talk to people! Water seemed to make it worse. The only drinks that seemed to help were sugary ones, because they’d coat the mouth and soothe the pain. But the effect was short-lasting. I was drinking so much that all the fluids just seemed to go right through me. I was hoping this horrible side effect would disappear as I dropped the doses of the drug, so I waited it out a bit too long. I didn’t see a doctor until it got to a point at which I could no longer eat solid foods. Everything I tried to eat would just turn to mush in my mouth, and I couldn’t swallow anything. I couldn’t even walk two metres without having to stop for a rest. My husband drove me first to the GP’s office, and then to the hospital emergency room. When the triage nurse measured my heart rate, they admitted me immediately.
A lot of what happened that afternoon was a blur to me, as I was almost in a coma. I remember the nurses inserting a catheter (bit hard not to notice that!), but I don’t remember other things like them taking an x-ray of my chest. A doctor came and told me my blood sugar level was 60 (as opposed to the healthy range between 4 and 8), that I had ‘diabetic ketoacidosis’ and what did I know about that? I remember begging for water because my mouth was too dry to be able to speak the words to answer him. I spent five days in ICU with an insulin drip. It took that long for my sugar to drop back to a healthier range, below 15.9, and for me to be out of ‘comatose’ territory. I spent time talking to the diabetes educators and dietitians, learning all about how to manage the insulin injections and the diet. I was so happy about feeling healthy again, that the treatment and lifestyle change didn’t bother me in the slightest. The dry mouth was gone and I could enjoy water again! This new condition had a clear diagnosis and management regime. I could handle it.
Prednisone complicates diabetes though, as it causes high blood sugar. To avoid any further incidences of high blood glucose levels, my Rheumatologist changed the Prednisone dose recommendations to try and get me off the medication faster. I was very grateful for that, having well and truly had enough of the steroids now!
March 2009 – July 2009
About one week after that, I had a major skin outbreak. It was an all-over body rash that started off as itchy spots that just joined together and spread. I looked majorly sunburnt from my head to my toes, and the skin was very hot to touch. And, just like sunburn, it started to peel and flake.
Back to the emergency room.
The doctors there said it was an allergic reaction to a drug of some sort. Only which one? The only new drug I’d started was insulin, but it’s very rare to be allergic to that. Then there was Azathioprine. And Prednisone. To treat the rash, they asked me to increase my Prednisone doses. They thought it might have been caused by tapering off the drug too quickly.
I was horrified. All I wanted to do was get off the steroids as quickly as possible. Increasing them would probably add an extra month to the time I had to remain on them. Plus, wouldn’t the rash just occur all over again, the next time the dosage dropped? (‘Yes, it’s possible’, they said.) We went and saw the Rheumatologist instead, who recommended I immediately stop taking Azathioprine. I was quite happy to do that, and just put up with the itchiness, rather than increase the steroid levels again. The rash cleared after another week or so and my skin was healthy again!
The Rheumatologist was concerned about other autoimmune conditions popping up though, especially since I had been unable to finish the course of Azathioprine. The only other immune suppressants he could recommend were very powerful though, chemotherapy drugs, with side effect risks of cancer that I wasn’t willing to take. I decided to risk it and stay off all medication. My lifestyle was healthy, given the diabetic changes to my diet and exercise. So I opted for taking vitamins and drinking rooibos tea to keep my immune system stable, rather than go for major drugs again.
July 2009 – August 2009
By early July 2009, I finally finished my course of Prednisone. I was well aware that my hearing would deteriorate as soon as I stopped the drug, but chose not to continue a relationship with this drug, after all that had happened. I was quite content to pursue cochlear implants rather than risk my remaining health any further.
By the end of July, I found myself back in the emergency room of the hospital. I had severe stomach cramps, and an ultrasound showed I had gallbladder stones. I was again admitted to hospital. Four days after that, my gallbladder was removed (and apparently an infected part of my liver was cut out). What a year!
I saw my ENT in August, and an audiogram showed that all hearing in my left ear was destroyed. That explained why I had lost my comfort crackle two months earlier. The hearing on the right was, however, relatively stable, so no need to talk to Cochlear just yet. (I was disappointed about that!)
September 2009 – October 2009
Well, I certainly wasn’t going back to the emergency room for another Prednisone prescription. This is the path I’d chosen. This was it. We would head off on our trip, have a great time anyway, and look at getting a referral to the Cochlear Implant Clinic upon our return.
For me, this trip was another major psychological milestone. I got through those four weeks away without relying on Prednisone to control any vertigo attacks. I was lucky to not experience any, even though the hearing in my right ear was fluctuating constantly. It was also my first time handling the diabetes away from home, on a trip where meal times (and often meal types) were out of my control. I was making confident judgement calls on how to change my insulin doses to manage what I was eating. Not to mention the timezone differences impacting insulin times!
There were no medical problems and we had a wonderful time, though I’m a bit sad about not being able to hear Big Ben! When I got back to Melbourne Europe ’.
November 2009
December 2009 – February 2010
My first appointment with the CI clinic at the Eye and Ear Hospital
By early January, I was undergoing ‘assessment’ for a CI. (Hearing tests, balance tests and a CT scan. Thankfully no need to go for any more MRIs, given I’d already had two!)
In February, I was declared a suitable candidate. Both ears qualify for a CI, and I have decided to get both ears implanted in the same operation.
By the end of February, I had received an operation date: 18th March.
March 2010
The decision to get two cochlear implants at once is not a decision that I made lightly. One ear, the right ear, still has some residual hearing and I’m able to wear an aid. The operation will destroy the residual hearing. This would concern me if the hearing I had on the right was clear, rather than distorted. It might also impact my decision if I knew the hearing on the right was going to stick around. But, given its history of fluctuating, it could very well disappear at any minute. I’m done relying on it. There is so little left now that the next major fluctuation will most likely finish it off.
So now I go forward, ready to take on the next journey in life. I go ‘back to the hearing world’ as a very different person though.
One who will always be hearing impaired with the CIs turned on. One who will always be deaf with the CIs turned off. One whose world will never be peacefully silent anyway, because of the tinnitus in both ears. One who is a type 1 diabetic and missing a gallbladder. One who is literally scarred (thanks to her lack of balance sending her tumbling down a flight of concrete stairs). One who still longs to hear Big Ben.
But also one who is emotionally stronger. One who is closer to her husband than she ever thought possible. One who is not ashamed of her hearing loss. One whose heart is continually touched by the generosity of the family and friends who rallied around her in troubled times. One who has formed amazing new friendships and alliances with similar people around the world. One who feels supported.
But most of all, one who feels like the luckiest person on Earth for living in a time where she can pursue this option.
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