The beginning of my story

It happened 108 days ago. Whilst sitting in a school auditorium, listening to a guest speaker giving a presentation, I put my head up from writing some notes, and out of nowhere came a loud screeching sound that filled my head with pressure. I was surrounded by colleagues and sitting in the middle of a row of people, so was unable to leave the room. The sound grew quieter into a dull ringing, but the pressure continued, and I was soon feeling lightheaded and disorientated. Whilst trying to act normal, I turned to my colleague to the right of me to discuss the question that the presenter had given us. We talked a little, and then I turned to my friend on my left. I could see she was talking. Her mouth was moving and she was looking at me and was gesturing. But I couldn’t hear anything she was saying. I was supposed to be writing down our answers, so I asked her to write hers on the list I was making.

In the break, I made my way to the toilet with a small group of friends. I was dizzy and things were spinning like when you’ve had too much to drink and can’t focus on a particular thing. In the toilet I desperately tried to pop my ears, closing my mouth, holding my nose and trying to exhale through my nose. This momentarily seemed to ease some of the pressure, but my head was still spinning and I was aware that I couldn’t hear well out of my left ear. I told a few people that my ear had popped – like when you go through a tunnel on the train, or when your ears block from the pressure of going up in an aeroplane. This is what it felt like, and though I was extremely uncomfortable, I wasn’t too worried. I was tired that day, and thought that maybe after a sleep, I would feel normal again.

Author: myhearinglossstory

Hi, My name is Carly. I am 37 years old and I am currently living in Spain. I am originally from a small seaside town in Yorkshire called Bridlington, and have also lived in China and Thailand. I am an Early Years primary school teacher, and have been teaching for more than 12 years. I love walking in the countryside, getting lost in Madrid, going out for breakfast, taking photos, listening to music, storytelling podcasts, baking, running, drinking wine, and eating spicy food. In August 2016, I experienced sudden sensorineural hearing loss in my left ear. I started this blog as a way to inform my friends and family about my progress, for anyone else who is going through a similar experience as me, or for anybody who is interested in learning about this type of hearing loss, and the way it can affect everyday life.

15 thoughts on “The beginning of my story”

  1. It sounds like the most horrible experience, can’t imagine what it must really be like. How are you dealing with it now?
    PS, find my way here through the link on Jackie’s blog featuring this post. I’m glad we bumped into each other.

    Liked by 1 person

    1. Hello Aishwarya. Thank you for your comment. I am still at the beginning of dealing with everything. The hospital specialists keep coming up with new plans and ideas to try to help me with the other issues I’m experiencing, such as the pressure in my ear. There is more to my story…
      Thank you also to Jackie for allowing me to put my blog link on her page 🙂

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      1. Jackie is wonderful and it’s so good to be able to connect with you. You are really brave for facing all this and do keep writing about your experiences because trust me, it helps so many out there who need help! 🙂

        Liked by 1 person

  2. my brother in law had worked in a Larsen and Toubro company under heavy pounding machinery and had lost his hearing. He went to a homoeopathy doctor in a small village near Hyderabad (a city in India) and he was given treatment for six months after which his hearing returned. he had to take a lot of homeopathy pills for it though. His wife, my sister, who is a doctor, does not believe in homoeopathy but let him try it out. and it worked for him. I hope your situation keeps on improving. It has made you stronger which is good.

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  3. Hi Carly,

    I am thrilled to have found your blog. After 46 days of living with SSD, I am able to relate to almost every you experienced at that stage of your journey. It is early days for me and whilst I am broadly positive and rising to the challenges with bravery and determination to succeed, I also have days when I feel I need support and to be able to link with others who “get it”. (As with anything in life others can only truly understand and empathise – as opposed to sympathise – when they have actually experienced it first hand).

    I am a Teaching Assistant, mainly assigned to a SEN child aged 7 but I also work with the Year group as a whole. I am 48 years old and a single mum of two teenage children. We live in the heart of the English countryside very rurally, my family support network is almost non existent and if I am being honest my life is, in reality, very isolated. This was something I was contented with before my SSD. Now, I feel that it is vital that I reach out and make contact with others.

    Like you my SSD came on suddenly, my only warnings were a feeling of extreme exhaustion in the days and weeks before the loss and increasingly loud tinnitus in my left ear. It also felt a little muffled (like I had put my head under water in the bath). I went to the doctor who said it was probably just a virus and would pass. However, I was quite firm with him and said I wanted to see a specialist. He made me an appointment which would be in about 12 weeks time. I instinctively felt that it was not a virus but was heartened by the fact he said it would probably pass (of course I latched on to the positive). I felt that 12 weeks was a long time to wait but that seemed to be the bottom line so I went with it.

    Three days later later I attended the pre-term CPD day before the children came back the following day. I felt exhausted throughout the day. Colleagues were doing the usual “wasn’t it lovely to have a break” and “I feel ready and refreshed for the new term” thing and I just smiled and agreed. Inside I felt dreadful, the tinnitus was “deafening” and had no hearing whatsoever my left side. I reassured myself thinking that a) I had had a busy Christmas so was a little tired and b) I had a hospital appointment in the pipeline.

    I woke up the next morning and everything was far from fine. I had no balance! I mean, really no balance. I had no control over where my central core was at all. I looked like I had drunk a bottle of gin neat and could all but stagger from a to b. This was clearly not right. However, being me I wanted to handle it in a measured fashion. I messaged work and simply said I was a little unwell and would not be in for the rest of the week (I actually believed at that stage that I would be in the following week – bright and breezy and my usual energetic self). Surely this was not serious!?

    I knew they was no point in going back to the doc at this stage, he had told me what was what in the most unambiguous terms on my last visit. So in a flash of inspiration and desperation I Googled help lines for hearing loss and rang the charity Action on Hearing Loss. I explained my symptoms to the wonderful lady on the phone. She said that I should go immediately to my local hospital A & E Department and despite my weak protestations that I had a hospital appointment in 12 weeks time and everything would probably be fine in a few days if I rested, I quickly realised she was right and I should take her advice.

    Within an hour I was being seen by the most amazing NHS nurse. She spent ages with me she booked me in to see a doctor (not the same one!). From there my numerous trips to hospital, steroid tablets and injections, MRI scan, blood tests etc began.

    Now, a number of weeks down the line I am in a better place.
    My hearing loss is complete and permanent on my left hand side.
    My balance has been partly amazingly “self corrected” by my clever brain (though I say it myself because I AM proud of my brain) by re-calibration. With Vestibular Rehabilitation Therapy I will be 99% as good as I was before.
    I am trying to make friends with my tinnitus…
    I am booked on a lip reading course starting in May

    I have done a couple of trial mornings at work over the last week and though it was odd it was doable. Strangely directionality seems to almost be as much of a problem as lack of hearing. I am going to have to get used to not having a clue where a voice or a noise is coming from. I am finding it alarming when someone said my name and I have to do a full 360 until I find the owner of the voice. I know I look strange but that’s going to have to be the way it is.

    I am timetabled to start back part time the week after next…..

    I also have a diagnosis. A minute blood clot in the artery to the ear disrupted the blood flow. Oxygen to the microscopic hairs was cut off rendering them non functional. They will never regenerate.

    So that’s me! At the start of my journey and over the moon to have found you and your blog.

    Lots of love, Beth xxx

    Liked by 1 person

    1. Hi there Beth
      I am also thrilled that you have found my blog, since our stories are so similar.

      I am sorry you have also had sudden hearing loss. You are so right about the difference between people being sympathetic and having empathy. It is also difficult to explain to people what losing hearing so suddenly can feel like, not to mention the other associated factors – tinnitus, dizziness etc. I wonder, do you have a sensitivity to sound since your hearing loss? Ear pressure? I’m also wondering whereabouts in the English countryside you live?

      I also felt quite isolated when I first lost my hearing. Living in Spain I am away from my family (in particular my sister), and also I am not a fluent Spanish speaker, so it was difficult to find any support in English. It is actually one of the reasons I began this blog – to tell my story and to see if there was anyone out there who was going through the same things as me. I found Sudden hearing loss is very under researched and it is difficult to find helpful advice online.

      How strange that your hearing loss was at the start of a new term. For me it was the first week after the long summer, and looking back on it…I was also very tired, despite having a lovely summer.

      How wonderful that you sought advice from Action On Hearing Loss. I think they are a fantastic charity (I did a fundraising campaign with them in the year I lost my hearing ;)) – I wish I had known about them when this had happened for me.
      I really admire your positive attitude and this shines through your writing. I think that lip-reading classes will be really great – not just to learn lip-reading, but to meet others who are in a similar situation to you. I have been trying to learn how to lip-read naturally, and am having some gradual success with it. I would be interested in hearing about how you get on with it.
      I am glad you were given a diagnosis – although, of course, it is not a pleasant thing to be told. The majority of people, who have sudden hearing loss, don’t end up receiving a diagnosis and that can be really difficult to deal with and accept.
      It is so positive to know you are going to be going back to work. You will get used to not having any idea where sound is coming from. After two and a half years of living with unilateral hearing, it’s actually the issues I notice the least now. I think we just get used to it – our bodies are capable of wonderful things!
      Thank you again for your contact.
      I wish you all the best for your return to work and in getting used to your new normal.
      Sending you love from Madrid.
      Carly xxx

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      1. Hi Carly,

        Thank you so much for your reply which was really lovely to receive. I am heartened by your comments and your kind and supportive words.

        I had my first Balance Therapy session yesterday which went well (I came away with some helpful exercises to do daily). I learnt that this therapy is different from the Vestibular Rehabilitation Therapy which I start next month.

        I do have a sensitivity to sound, sometimes when there is lots of noise coming from lots of directions it is overwhelming and the best way of coping is to go somewhere else!

        I feel lucky to have received a diagnosis – the fewer medical mysteries in my life the better!

        I sound brave (and I’m trying to be) but if I’m going to be honest I’m anxious about all sorts of things; work, finances, my future….

        Reaching out on your blog is a positive step for me, I am hoping it might be the pathway to me linking with others who have SSD and making contact with people who “get it”.

        I will certainly let you know how the lip reading goes. I think it could be a key element in facilitating my progress and building my confidence.

        Sending lots of love to you in Madrid.

        Beth xxxx

        Liked by 1 person

      2. Hello again Beth,

        I’m so happy to read that you had a helpful first session at your balance therapy. I’m hoping the other sessions will continue to help you further. I have actually just finished the vestibular rehabilitation, and am going to write a blog post about it as it was such an interesting therapy.

        I think it is very normal to be feeling anxious about things. You have experienced a loss, and also a shock and it takes time to get used to the new ‘normal’. Be kind to yourself and give yourself the time you need grieve your hearing loss, and to work towards getting your life back on track.

        I also think the lip reading is a great idea as you will meet others who understand, better than people who have not had a hearing loss, what you are going through. It will also be a great tool to have to help with communicating, especially in places with a lot of background noise.

        Wishing you all the best, and please keep me posted, and feel free to ask any questions you think I might be able to answer.
        Carly xxx

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