CIST and SSHL

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  • 3 Month Summary

    ‘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.

  • Day 26 – crash!

    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.

    Here is my ‘crash’.

  • I have SSHL

    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!!!

    The results are remarkable!

    It’s a bit up and down, but mostly up.

  • Day 6 – August 14 – What it sounds like in early SSHL.

    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.

  • Day 1 3rd July – A ‘blocked’ ear

    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.