I started this blog way too late – I’m forgetting a bit what it was like at the start. But here’s a record of my journey from the start. If you’d like to read the most recent posts go here.
I had a ‘blocked ear’ in July 2023. For the first 4 weeks I carried on life pretty normally. But over time it became very sensitive and painful. It started impacting my ability to socialise. Steroids provided some improvement, but this was temporary. 6 months later I’m no better.
My current thinking now is that what started as possibly an inner ear or nerve issue (I may never know) became a brain issue. I’m writing this website as a way to help me learn and understand what’s happening with the hope that my hearing can improve.
I came back from a great morning swim and sauna with my friend Glen from Sydney, and noticed my ear felt a bit blocked. I tried shaking my head but the ‘water’ stayed in there! That evening not only was my ear still blocked, but things were starting to sound a little strange. It was like when people talked I could hear then coming from inside my ear, not out in the room. It was starting to get a bit annoying.
It was getting more irritating so that I put some headphones on my ear to stop the noise.
Two weeks later I was watching a movie with the family and playing with my headphones and I realised that if I blocked my left (good ear) I was completely deaf in my right ear!
So I booked into the local medical centre. Over the next 2 weeks I was in and out of there with ear drops, ear cleaning, and antibiotics, but no improvement. In fact things seemed to be getting worse. My right ear was becoming so sensitive to noise that I could not be around people.
By trial and error I found that if I plugged my bad ear, it became manageable. So over the next few weeks I was attending meetings with one of my ears plugged.
I have been trying to listen to music in my bad ear. (CIST it’s called). It’s very strange. Hard to describe what I’m hearing.
For the last week or two, whenever I listen to a new song, it takes me 20 seconds to work out what song I’m listening to!
It’s not just that some frequencies are missing, my brain can’t actually decipher the music. It just sounds like a warbling chaotic mess. I can hear the rhythm of the drums, but I can’t even hear which drums were being hit.
I can’t hear singing, I can’t hear guitar, I can’t hear piano. It all comes as a random wall of warbling tones.
The first thing my ear can focus in on in a song is bass guitar or the beat of the drums.
Interesting is that songs that I learnt in my teenage years like U2, and Cold Chisel and Stryper were the first songs that I could recognise, so I’ve made a playlist of 80s music for my brain to be able to understand what I’m listening to.
The other really interesting thing is I have been listening to sine waves just to see which frequencies are good and bad, and in my bad ear actually hears the wrong frequency of the sign wave by 10 to 20 Hz. Sometimes more!!!
If I play 2 kHz pure tone into my right ear first I actually hear it maybe at 2050 hz or something. Enough that when I then play the same sinewave into my left ear, it sounds like a different pitch, but then if I play it in my left ear first, and then, in my right here, my right here hears the proper pitch.
It makes me realise how much of our high brain processing power is needed to understand sound, there’s so much going on!!!
Another interesting thing thing is, my brain can very easily latch onto rock music, but it’s very hard to hear something pure like a piano.
One month later my right ear was still deaf. So I visited my local GP on August 2.
Straight away he took it seriously. He did tests with tuning forks. He asked me questions. He sent me for a hearing test that same day. He sent me for a CAT scan and and MRI, and I was booked into an ENT specialist the very next day. Within 24 hours I had a diagnosis form the ENT specialist of SSHL. This means ‘Sudden Senseroneural Hearing Hoss’.
The ENT, put me on the standard treatment of Prednisone for 10 days. I realised this was serious. I took time off work. I figured 3 weeks off work to help my hearing was worth it.
I started doing a hearing test to monitor my progress. I also started something called CIST which I read about.
Here is the progress of my first 3 weeks after diagnosis!!!
Last Sunday I went back to church for the first time, and preached 3 times!
My hearing was amazing. I could talk to people normally. No pain. It was basically better.
I woke up Monday morning and my hearing was slightly worse. I went out to a coffee shop Monday lunch and could feel my hearing worsening. Slowly throughout the day I got deafer and deafer and there was nothing I could do to stop it. By Tuesday I was almost completely deaf again. I went for an emergency visit to the GP. A different GP to normal. I wanted to know if I had done something to cause this hearing loss? Should I be more careful with my hearing. He didn’t think it was something I had done. If the original hearing loss was say a virus, how could going to church cause a virus again.
So it’s just a matter of wait and see what happens next.
I was first diagnosed with Sudden Sensoral-neural Hearing Loss in August 2023. This is a sudden deafness usually in one ear and the brain gets very confused. I came home from swimming and thought I had water in my ear. But my ear stayed ‘blocked’ and over 3 days it went totally deaf.
I went to a local medical centre couple of weeks later who did not diagnose it properly as SSHL. They gave me ear drops and rinsed it out.
SSHL
It was almost 4 weeks later that I went to my regular doctor who instantly recognised it as important and sent me to a hearing specialist. I had an MRI, CAT scan, hearing tests etc. It was SSHL. By then I’d been deaf in my right ear for 4 weeks. During this time high sounds were very harsh to me. I couldn’t understand speech in a crowded room. I became quite anti-social. I blocked my bad ear most of the time to avoid the pain. This probably made things worse as it reinforced the disconnect between my bad ear and my brain. With SSHL the best thing is stimulation of the bad ear as soon as possible.
When I was diagnosed with SSHL I was prescribed to standard treatment – oral prednizone for 7 days.
CIST and Hearing Graph
My audio engineering background kicked in and I started doing my own hearing test every day to track my progress. I have also been using CIST therapy for the entire time. CIST stands for Constraint Induced Sound Therapy which is a fancy was of saying block your good ear and listen to lots of music in your bad ear so that your brain learns to hear again. I have also tried every alternative herbal remedy as well. Magnesium Baths, Curcumin, Zinc, Vitamin D, Vitamin E, Magnesium Threonate, even Borax. Willing to give anything a go!
You can see the results below. I’m now at day 107 and here are my hearing results. I do a test every day.
You can see up till day 24 my hearing was slowly improving. The effects of the Prednizone? During this time I was on leave. On day 24 I went back to work and my hearing dropped drastically. Overloaded my ear or brain? I visited a doctor again as I thought I had caused my ear damage again but the doctor thought it was more a coincidence or in my head.
Since then, from day 24 to day 93 it’s been up and down. From day 24 to day 93 I have been trying to live as normal life as I can. I have not been able to notice any correlation between any of the herbal remedies and my hearing. The magnesium baths may have helped. Not sure if that’s due to the magnesium, or just sitting in a bath for 1/2hr relaxing and listening to music!
There has been a definite correlation between how much I listen to music and how much my hearing improves. On days where I don’t listen to much music the hearing does not improve as much. There seems to be a 6-24 hour delay in the music and the improvement in hearing. It’s a very slow process. And I need to listen to over 4 hours a day for there to be a significant improvement.
The black lines in the graph are Sundays. I am a minster and those days are very big for me. And there is something about Sundays making me go deaf on Monday. Is it loud noise? Talking? Singing? Stress and adrenaline? The fact that I’m not playing my music in my ear as the day its too full? Not sure yet, it’s a long slow journey of learning!
Since day 93 I’ve taken a break from church and slowly trying to work out what’s causing the hearing loss to re-occur. On day 93 I had a particularly noisy Sunday. I went to church 3 times, and attended a wedding, and had a meeting Monday. This pretty much killed my hearing for a week. (Day 93 to day 100).
I also entered what felt like dangerous territory after day 93 because my hearing was so bad in my right ear that when I tried to do my CIST I was hearing the music in my left ear instead of my right. When this was happening I had to stop listening to music. (I only listen to music when I could actually hear it in my right (bad) ear. ) This may be why the slower than usual recovery from day 94 to day 107.
Change in Strategy
Since day 93 I am trying a completely new approach. I am being very careful not to go into noisy situations. I am limiting my conversations to one a day. I am trying to prevent my hearing from going backwards the best I can. There have been 3 times it went backwards in the last 2 weeks. They were when I had a conversation with someone for an hour outside, when I did a zoom meeting for an hour, and when I attended a meeting in person.
So the last 2 weeks have almost been total social isolation so as to give my ear/brain a chance to heal. I am hoping that the red line continues upward, and then I will try to gradually reintroduce myself to social environments.
Isolation
We live in a city of 40,000 people. SSHL affects one in 10,000. So there could be 3 other people in Dubbo with SSHL. I have not met them yet!
It’s a pretty lonely journey. Especially when I can’t talk to people on the phone or in person. The facebook SHSL group has been invaluable to communicate with people from all over the world with the same condition. It’s interesting seeing the different approaches from around the world.
It’s seems so rare a condition that the doctors are very limited as far as treatments go. I was given a dose of prednizone, which helped after a week or so. Then I discovered CIST and have been trying to listen to music in my bad ear every day, with my good ear permanently blocked. I have not found anyone in Australia using or recommending CIST.
Lessons
On a positive note, it’s been good to have an enforced slow-down. I have certainly been made more aware of my frailty. It’s made me more thankful in general. We can often take our health for granted, but every day is a gift from God, every breath is a gift form God to be thankful for. I am a fairly self sufficient person so any setback is good in that it both humbles me and makes me more dependant of God in prayer. I’ve enjoyed praying more, mainly for others.
It’s also been hard for me to say no and hard to accept help. I don’t like to disappoint others. I don’t like to be at home or resting when I could be working. I’ve actually found it harder to rest because I rest more easily after I’ve been working hard. it’s been good to reflect on why this is. So I’ve been also learning to put my identity in Jesus, not in my work or my performance. Another good lesson.
It’s also given me an appreciation for others with hearing loss. How socially isolating it is to be in a conversation, and people think you are following along, but in fact you can’t make out the words. So when you can’t participate you are perceived as aloof or uninterested. I feel like leaving the room, but I want to be around people and part of the conversation, even though I can’t follow it. There are people who live with this all the time. I hope I can remain understanding and empathetic to them.
The future
Here I am 4 months since onset and 3 months since diagnosis and my hearing has still not settled. To me this is not all bad news. I am optimistic that it can return to close to normal. Most of the times my hearing has dropped suddenly again in the graph above I can attribute it to something I did. The hearing specialist said 1/3 of people with SSHL go deaf, 1/3 regain hearing and 1/3 are somewhere in the middle. Stay tuned to see which I will be!
How I did the measurements (boring but technical bit).
The measurements are the average difference between my ears at 4 frequencies.
I use an iPad app called ‘Audiogram’ with my bose quietcomfort headphones. I use the same headphones each time. The measurements may not be perfect, but that does not matter because what I’m measuring is the difference between my left and right ear. So the actual absolute levels don’t matter.
The audiogram output looks like this.
Each day I test at the 4 frequencies where my hearing loss occurred (125Hz to 1kHz) then take the average. (In the picture above I’ve done all 8, but I just count the bottom 4 where the difference is.)
I start with the slider up the top, close my eyes, then slowly move it down until I hear the tone. Then I do the next frequency. After 8 goes at this, the graph is done. Then I add up all the blue values, add up all the reds, subtract them and divide them by 4, and that’s the average difference between my ears. I plot this each day on the graph.
So the graph is a plot of my hearing loss in my right ear compared to the left.
When the combined score is down around 50 difference I’m almost completely deaf in my right ear. When it’s up above 15 things sounds almost normal to me.
Well the graph says it all. My new plan started day 96. (The borrow left of the nice looking mound on the right of the graph.) I decided to be very careful about my hearing. Listening to music 4-6 hours a day. Limiting myself to 1 hour of conversation a day. It seemed to be working very well.
On 30th November (Day 119) about the peak of that nice smooth hill I went for my 3 monthly checkup to the ENT.
Needless to say he was very happy with my progress.
I had 3 questions for him.
How can I stop my hearing from dropping again?
How careful should I be about noisy situations?
What could be causing my hearing to drop?
I guess I was most interested in questions 3. In once sense I know what causes it to drop – going to a meeting, going to church, going to a coffee shop.
But what about those situations causes my hearing to drop?
Is it the multiple conversations?
Is it my talking?
Is it the background noise?
Is it just the noise level?
Why does a conversation cause my hearing to drop but listening to music doesn’t?
The ENT had no answers at all. He was sceptical of my graph. He said with what I have, my hearing doesn’t go backwards! My hearing was now better. I didn’t need to be careful at all.
This sounds strange, but I wanted to believe his words. So over the next couple of weeks I started being less cautious, having more conversations. Tentatively at first, but it gained momentum. I wore my headphones less, and I stopped listing to music as much. I tried to live more ‘normally’.
It was hard to see at the time, but looking back on the graph now it’s obvious. After my visit to the ENT my hearing went from improving to declining. The curve tells the story. It’s like I was coming down a hill I’d just climbed. But I failed to notice it at the time.
The big crash came on day 135-138.
On day 133 I had a practice for our church carols. (This is where the hill turns into a cliff on the graph at the top right,) I think in hindsight if this was all that I did my hearing may have bounced back. But this was followed up on day 135 with a wedding. I was feeling confident after what the ENT had told me and was ‘pushing’ things to see if my ear would hold out.
On day 136 I could tell things were not good. My ear was feeling bad and blocked again. But the damage was done. And it takes a day or two for the effect to appear. The next 2 days I stayed at home to give my ear some rest, but it continued to crash.
And now it’s as bad as it ever was. My ear is in pain. It’s hard to describe how aggravating the ear is. I can’t be in a conversation again or it hurts. I feel like I want to poke a pencil through my eardrum to stop the ringing. (Only I know that won’t stop it!) The ringing is so loud I can’t sleep. If you have SSHL you’ll know what I mean.
I am looking back at my graph thinking why did I do this?
Why did I listen to the specialist when I had a gut reaction he was wrong?
I don’t think the ENT has much of an idea of what’s going on. But also a professional can’t trust a person’s home measurements. If he did he’d be in trouble. He can only go on the professional hearing test results. And they didn’t show my hearing drops as the tests were done when I was at the top of the hill.
I’m going to have to put in a bit more work reading up on how to manage this!
As you can see from this graph, I’ve had a very bad week with my hearing. The worst it’s ever been.
For the last 5 days Bono sounds like a Dalek, Cold Chisel sound out of tune, Midnight Oil is missing all it’s melody, and Crowded House sound like they are underwater.
But today Bono’s voice is back to normal! So things are looking up.
I’ve had a very quiet week living mostly by myself out in the granny flat away from noise and doing nothing.
Tonight I ate dinner with the family for the first time in a week. It was sooooo nice to be back inside. We had risotto, home made beef sausages, roasted vegetables, and good conversations.
I could hear all pure tones from 30Hz to 12kHz, a bit of noise around 500Hz but not so much that it drowned out the main sine wave.
This is the first time since last Sat (6 days) that I can hear all frequencies clearly.
And all the music I was listening to sounded as it should.
My actual hearing levels are still way down, but what I’m hearing is good.
No I didn’t do the mowing! But we had the mower going yesterday to mow the lawns and I was around (with headphones on) doing gardening.
I woke up this morning with bad ringing and finding it hard to hear. I just did my hearing test which confirmed my suspicions. After 3 good days I’ve gone almost deaf again! So what happened? Yesterday morning we did some gardening and the kids were using the lawn mower and whipper snipper.
I had headphones on but I could still hear the mower sounds mildly.
My hearing was pretty good so I had lunch and dinner with the family.
Last night we were up at the church setting up some fairy lights.
So that included a car trip, and there were some conversation going on while we were setting up the lights.
On reflecting, that was a big day for my ears. Too big. I need to be more careful when my ears are good to prevent them crashing again.
This means today I’ll need to be by myself, eat by myself, and try not to have any conversations.
It’s days like today I am very thankful for doing my graphs! I woke up with a headache and bad ringing in my ears, and very deaf. I was woken up early by loud ringing my ears and couldn’t get back to sleep. Then I was irritated by the sound of everyone being joyful on Christmas so I had to go outside. How do I be around family on a day when they are so happy they will all be talking?
As I was saying, the graph is helpful because even though it FEELS worse today, the graph tells my my hearing has actually improved since yesterday. So staying at home and doing nothing yesterday helped. This is psychologically important for me to see and notice the small improvements, because I’m not a great one to look at the big picture, whether that’s eternity, or 10 years, or next year. Instead I easily get stuck in the moment!
So there’s 3 things that I remind myself.
In the now – there is some improvement – but even if there wasn’t that’s OK – God still has things in his control.
In the medium term – I know there is an upward trend in my hearing, and it’s possible that in 6 month I will be better.
In the long term – this life is short and there is an eternity waiting with a new creation where hearing loss or any other problems will no longer be there. So all this is temporary!
Something I want to document about my hearing. The hearing tests that the specialists do don’t capture everything that’s going on. I wonder if they realise this, or they are unaware. But the test measure how loud I can hear at each frequency, but they don’t indicate what the quality of the hearing is. For the past 3 days any noise I hear between about 200 and 600 Hz all sounds the same. If I press notes on a keyboard app that is generating a sine wave every note sound she same. If I measure my level at 250Hz, or 500 Hz, it registers at hearing, But what the hearing tests don’t show is that my ear/brain ins not differentiating between 250Hz and 500Hz. It could be that the doctor’s don’t care about that, because the levels at each frequency give an indication of the health of the hearing, and it doesn’t matter that 250 and 500 sound the same. Or it could be they are unaware.
Anyway I did 2 plots yesterday, one is of the sound volume level I am hearing, and one is of the sound quality.
The top graph has the usual shape of my hearing tests, worse at the left, better high, but the bottom graph is slightly different. The worst quality of hearing is from 200 to 800Hz. Even though my hearing below 200 low volume, what I do hear is clear, so if I turn the bass up it sounds good. Btu for the frequencies around 400Hz, then I turn them up they sound all wrong. Out of tune. Like a Dalek. Underwater. The hearing tests do not measure this. But I can hear it in my head.
I can also measure it by doing a frequency sweep from say 100Hz to 1000Hz. This is where you play a single note and slowly increase the frequency of it. I can hear a single tone increasing in frequency up until about 200Hz, then the tone disappears and I hear one massive tone, my guess is it’s around 400Hz but it’s hard to tell, then when the rising note hits around 700Hs I can hear it slowly rising again and by 800Hz it’s clear again. At 300Hz-600Hz the background noise is so bad I lose the single sign wave altogether.
The third way I can hear this is if I play a scale on a piano app that is playing a sine wave. The notes from C4 (262Hz) up to C5 (523Hz) are almost indistinguishable – they all sound like the same note. To help improve this I am playing myself songs in this scale, and trying to imagine what they should sound like.
I am playing ‘I am not done changing’ which covers C,D,E,F
I am playing ‘Amazing Grace’ which is so familiar to me from a young age so I can ‘hear’ (imagine) the notes even when my ear is not hearing them and try to force/train my ear to heat them properly. Amazing Grace also has a good message so that encourages me!
Twinkle Twinkle little star has a simple melody and is also well known from a young age so it’s a strong memory.
Joy to the World just goes form C down to C, hitting every not so it’s very useful!
I also did this hearing level above manually, without an app, using a sine wave generator, so that I could track more frequencies. (32,40,51,64 etc instead of just 125Hz,250Hz etc). That’s because the tests have big gaps and I can tell that my hearing is up and down between the frequencies being measured. For example here it drops around 600Hz then up at around 800Hz then down at 1000Hz, by what I estimate to be 20 or 30dB. It takes too long to measure like this each day but I wanted to see what was happening!
Today I was able to isolate the ringing to exactly 320 Hz and an octave up at 640 Hz. By playing it back into my ear while I was writing this article it seems to have mostly gone!
Happy Christmas everyone. I am thankful that my ear has mostly stopped ringing. I think I am ready to face the day.
CIST and SSHL 