‘Blocked Ear’
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.
CIST and SSHL 