CIST and SSHL

  • My experience

    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.

  • 11 Jan – loud ringing.

    Today I was woken up at 5AM by incredibly loud ringing in my right ear and headache. It’s weird that ringing can be so loud it wakes me up from sleep, even when I know it’s just in my head. It’s not a real sound.

    It’s been there all day (now 4pm). Around 900kHz and again at 1800kHz. What does that mean?I’m not sure. Is this a side effect of hearing improving or reducing. I have no idea. But My ear is again extremely sensitive today so I’ll wait out the day and see what tomorrow brings.

    I have absolutely no hearing of notes between D6 (1175Hz) and A6 (1790). Anything between around 1100 and 1800 I just hear it as one tone at 1800. And if I try to turn it up in my right ear enough to hear it, I only hear it in my left ear.

    This is the deafest that ear has been since this started. I can’t listen to music at all as I hear it in the wrong ear.

    I am trying the best I can do with the CIST, listening of a bit of music trying the frequency training, but it’s hard.

  • Jan 12 finally an improvement!

    I have been on my new modified CIST protocol for 7 days now. Finally, today, there was a noticeable difference. I can see now in hindsight that the orange (1kHz) has been on the move upwards for a 3 days now.

    Yesterday was a particularly bad day, the worst of the week, with lots of tinnitus and aggravation. (I woke up at 5am with loud ringing that stayed all day). I think that was perhaps a good sign that things were changing.

    I stuck with the protocol mostly yesterday. I dropped a couple of things as I was having a bad day but I did 80% of it. I did the music and the frequency training, the focussed listening and the new skill. I started the ‘changed habit’s by shaving left handed. I keep forgetting that one.

  • What a strange day

    Today started with a good hearing test.

    Then by mid morning my ear started ringing badly and I completely lost hearing at around 1hHz.When I played a pure tone I could hear nothing until I turned it up so loud that it was coming all the way around to my opposite ear. This was a strange experience to be completely deaf. Up until now I have been partially deaf and hearing strange things. This deafness was only at one frequency, well plus or minus about 2 tones each way.

    By this afternoon everything sounded very tinny like I was in an echo tin can, and the ringing was so loud I couldn’t concentrate on anything.

    I was doing some worksheets and when I finished, my hearing was back. And it feels quite good now at 10:30pm.

    This is new. A massive swing down and up within 12 hours.

  • Improvement

    I’ve been doing the new CIST protocol for 11 days now and the last 4 days have seen a definite improvement. Check out this graph!

    I started CIST on day 155.

    The first noticeable improvement was day 162. (7 days in)

    The last 4 days have been amazing given the previous 3 weeks.

    To put it into perspective, this is the last 6 months. So I’m still not great, but I was stuck down low for quite a while after the last crash.

    Tonight I ate a full dinner with the family for the first time since Christmas! (Today is 16th Jan).

  • Updated CIST Protocol

    After being on the CIST protocol for 10 days I’ve made some changes.

    Future Visualisation

    I’ve added Composition. Spend some time trying to write a song! I got this from Oliver Sacks book called ‘Musicophilia’ in a chapter called “Pitch Imperfect:Cochlear Amusia” It’s a great read! All about a piano player who couldn’t hear notes properly and when he started composing his brain fixed itself.

    Oliver Sacks writes

    “And I, as a neurologist, am filled with wonder that the retuning in his musician’s brain has been able to counterbalance the patchy and inconstant output from his aging cochleas, that through intensive musical activity, attention, and will, Jacob’s brain has literally reshaped itself.”

    ‘Composition’

    I’ve combined ‘Future Visualisation’ and ‘Positive Emotion’ into one thing. I wasn’t sure clear on what they were exactly, especially as I tried to start them. They were something I got from my wife from something she did called DNRS. Research DNRS if you are interested. I asked for permission to write about it but they said no it was copyright which is fair enough. Basically it is visualising a future state of when you can hear well, and associating positive emotions with that, by recalling past good times, so as to encourage your brain to heal.

  • February 24 2024

    It’s been 6 weeks since my last post! After a terrible time over Christmas I posted that my hearing was on the way up on 16 Jan. Well the great news is that it’s stayed pretty good. Here’s a graph of the last month:

    Since 6th January I’ve been sticking pretty closely to the CIST protocol, and being very careful to avoid loud noises. It’s held my hearing at a pretty consistent level.You’ll notice a BIG drop around January 20th. There could be a couple of things contributing to that.

    1. On January 17th we had a family celebration dinner with the family. After so long in isolation I just had to do something fun.
    2. I had a blood test on 19th January, end even though I had earplugs in, the waiting room was extremely loud. I went outside but there were noise fans, so I was stuck in noise for about an hour.

    My hearing crashed on 19/20 Jan.

    Since then it’s been great. (I’ll do a separate post about that!)

    Family Dinner on Jan 17 before the kids went back to University – no earplugs in! (Killed my hearing but only for a few days.)

  • Update – new car and new diagnosis and new role

    Someone who read my blog contacted me and said they think I might have a certain condition, and encouraged me to get a series of professional hearing test that showed my hearing dropping and take it to the ENT. (Not just my home made tests which an ENT is not allowed to talk notice of). This is did. (separate story with a twist – I’ll post about that later!)

    New diagnosis

    My new ENT says I probably have Ménière’s disease. So now I’m awaiting some tests in Orange which are on 15 May – that’s almost 3 months away. Huey Lewis (from Huey Lewis and the News) has Ménière’s. I listened to some interviews with him. He’s the only person I’ve heard that actually gets what it’s like. Everyone else just talks about hearing loss ,but this is not hearing loss, it’s distortion and sensitivity, similar to what he describes here:
    https://www.youtube.com/watch?v=nG_Ggdt00Rk

    It makes a lot more sense that what me previous ENT said, but sadly it means things may get worse. I’m not quite ready for that news yet. For now I’ll just make do with what I have and be thankful to God in all circumstances.

    New role

    Church have been very supportive. They have put me off ‘pastoral duties’ for 3-6 months. This means no preaching, no attending church. Thankfully our church is big enough that there is plenty of behind the scenes ministry and work to do. I can still catch up with people at a quiet location. I can still attend some meetings. This term I’ll be writing some Bible Studies for our growth groups for term 2, writing some daily bible reading notes, helping launch our growth groups for the year, organising some things with Western Plain Convention and Easter meetings, as well as the usual Sundays co-ordinating and some long term planning. I always found preaching hard word, but I’m actually missing it!

    New Car

    I have been unable to drive. Even with earplugs in the Nissan Leaf and Mitsubishi Outlander are too noisy. Not the engine, the road noise. But I can’t bear being stuck at home!

    I did some research and the quietest ever car was meant to be the 2007 Lexus LS600 and LS460. So here is our new car. A 2008 Lexus LS460.

    We’ve gone from a 2019 plug in hybrid to a 2008 V8 and it’s QUIETER!!!!!

    It’s a shame they can’t make modern cars as quiet as the old ones!

  • A good turn of events

    Someone reached out to me – an audiologist, and suggested I try to get a professional audiologist test of my hearing dropping, to show my ENT. I know my hearing has been up and down, but an ENT is not allowed to go off my measurements. I did this and I have a new diagnosis. But it also lead to a surprise.

    I had a hearing test on January 25th, when my hearing was reasonable, then I decided to deliberately ‘crash’ my hearing so I could get a mother test showing the fluctuating loss. So January 25 we had visitors and a noisy dinner. My hearing didn’t drop! (Despite dropping a week earlier on Jan 16 after an equally noisy dinner). So January 26 we had a host of people for lunch and dinner – still no drop. Jan 27 I went to a meeting – hearing still good! Jan 28 watched some cricket for an hour – still good hearing! This persisted for 11 days!

    Even since then, when it’s dropped it’s recovered much more quickly.

    I now have a new normal. I can tolerate, for the most part, a normal level of conversation.

    Things I can do:

    Quiet meeting with <10 people in a quiet place.
    Eat at home with plastic knives and forks and family in quiet mode.
    Conversation in a quiet place.
    Sit outside in ambient noise at home.
    GO for a run without earplugs in.

    Too loud:

    Coffee shop  – fans, talking, clanking etc.
    Anywhere with opening and closing of doors.
    General moving of cups, plastic tubs, kitchen etc.
    Car driving past.
    General outdoor background noise in CBD.

    Things I can do with strong earmuffs/plugs:

    Cleaning, cooking, washing up.
    Shopping,
    Driving a quiet car with no conversation.
    Typing.
    Shower and electric shaver.

  • Feature request for Spotify -please help!

    This is a request to Spotify to allow independent Left/Right EQ and volume adjustments.

    This will allow people to compensate for any frequency of hearing loss in one ear. (Like high-level hearing aids do).

    It will be a game changer!

    If you have partial unilateral hearing loss it should allow you to hear both speech and music better.

    You can vote it up here, it needs to get to 50 votes to be considered, and you need to sigh up for Spotify (free) to vote.

    https://community.spotify.com/t5/Live-Ideas/Independant-L-R-equalisation/idi-p/5914178#M283530

    Explanation

    If you have just one sided hearing loss, it’s very hard to listen to music. You can generally adjust the balance of headphones to make one side louder, but you cannot adjust the Bass or Treble of each side independently.


    For example if you lose the bass in one ear, you need to boost the bass just on one side.

    Very high end aviation headsets have this feature. For example these Lightspeed Rule Headsets ($1500) allow independant EQ for each ear. They automate the whole system and call it HearingEQity.

    https://www.lightspeedaviation.com/product/lightspeed-delta-zulu-anr-headset/

    But L-R Independent EQ has been around on graphic equalisers for years. Back in the 80’s all the graphic equalisers I played with when mixing bands were stereo.

    Please vote it up on Spotify!

  • What difference does it make to everyday life at the moment.

    A snapshot of my week!

    Most days I wake up and my hearing ‘feels’ OK, but I’m still partially deaf in my right ear. About once a fortnight I wake up deaf in my right ear. (Finger in ear sounds like crepe paper – harsh scratchy). Most if not all times I look over my Apple watch and a bad day it correlates to too much noise the day before.

    So 2 weeks ago I went deaf. I had an hour of loud noised the day before. I said to Jill “What happened yesterday between 11 and 12?”

    “You were at the doctors!”

    That set me back. The doctors waiting room, the pathology waiting room, they are very loud places!

    Last week a longer meeting set me back.

    I went to the post office, and although I had headphones on, the lady was asking a question so I took my headphones off, right as she scanned and it beeped, and it sent a pain down my ear and a ringing that lasted for 5-10 minutes.

    So I mostly wear headphones for protection from unexpected noises.

    If I take my earbuds out so as to talk, my ears are vulnerable to doors opening and closing, things getting dropped, loud laughter or kids yelling.

    When I take them off my ear feels naked, exposed, because any surprising sounds bring irritation. Gardening is OK if I have music playing. But with headphones off there are too many clunks, and bird noises, and dog’s barking.

    It gets claustrophobic having earbuds in 12 hrs every day. And they get smelly! Once a week or so we have been organising for Jill to head outside for 1/2 hr and I can have a time where I turn of the aircon and fridge, take off my headphones, and actually relax. It’s so lovely. Thanks Jill!

    Work

    Most days I can go to a staff meeting, if conversation is quiet. I can’t hang around for lunch or my ear gets irritated. I tried 3 hrs of meetings and I went backwards the next day. So even if the ‘level’ is low, time seems to bring an ear fatigue somehow. Yet on a different night I survived a 3 hr meeting OK with no implications.

    One of the hardest things is finding a quiet space. I was at the church building meeting with someone and it started raining on the tin roof. I had my earbuds with my but not my noise cancelling headphones. 1/2 hr was long enough to set my hearing back the next day.

    Leisure

    Last Thursday was our day off. I got up and was going to to go to the library with Jill. We drove into town (10 min) in the Lexus and by then my ear was irritated. So I dropped Jill with Ben and headed home. So I didn’t make it to the library.

    So days off are a bit boring.

    No movies, no coffee shops, no shopping. I went to the jeweller with Jill to buy an 18th present for Laura but it was ‘headphones on’ the whole time at the mall. Signalling with our hands for thumbs up or thumbs down at the various shops. It did make for a fast shopping trip!

    We tried a coffee shop, out on the Old Dubbo Read. We were the only customers there. We sat on the back verandah. It was OK, but when I took my plugs out to chat, there were lots of irritating sounds. The fridge fan. The register beeping. Kitchen sounds. So it was not relaxing. People stacking chairs.

    Last Sunday night our 2 girls were baptised. It was wonderful! I was unable to attend the service at church, but I watched on Zoom as they gave their testimonies of how they came to follow Jesus, and I was able to head down to the pool at watch the baptism which was fantastic!!! As soon as it ended and the general chatter started, even though it was outdoors, I needed to escape the noise levels.

    Family

    I must be driving the family crazy. They are so patient with me especially Jill. One day I’m saying talk louder I can’t hear. The next day I’m saying don’t talk so loud it hurts. Communication is so important in marriage and it’s the incidental things that you often take for granted. We are reading ‘the Seven Principles for Making Marriage Work’ by John Gottman, very good and practical. If you are finding marriage hard, (and who doesn’t!!) I’d recommend it. It’s bringing a freshness to our relationship.