Second Audiology appointment for Hyperacusis……..WOW!

A while ago I finally got an appointment with the Audiology department to discover whether I had Hyperacusis. It turned out that yes, they diagnosed hyperacusis in both ears but I’d been referred to the wrong department. 🙄 ..So I was put on another waiting list for the right department to see if they could help me…..🙈 Well yesterday was that appointment. Luckily I didn’t have to wait another year!

You can see what happened at the last one here if it helps:

Not sure how much you know about dementia but one of my first senses to be affected was my hearing. I’m not going deaf, it’s just that certain tones of noise physically hurt my ears.
Now audiologists are recognising it’s affecting many people with dementia and diagnosing them with hyperacusis and I suppose I’m here today to find out what help they can offer me.

I was due to travel to Newcastle in the morning ready for a meet up with playmates at another DEEP group for their 10th birthday and their even bigger event on Thursday. But my calendar is chock a for the next few months and I knew it would be hard to rearrange. So I had to dip out of the festivities this afternoon and travel to Newcastle after my appointment ready for the big event on Thursday……

Seem to be in waffle mode today….😂…..anyway back to the appoinment…..because I was getting a taxi at lunchtime I had a different cab driver. We chatted amiably on the way there. She has cancer and also has an interesting story as a cab driver trying to keep her head above water. I’m always saying, everyone has a story………

This appointment was at my local Community Hospital, so again, I didn’t have to go to the dreaded Hull Royal. It’s a light airy waiting area

I just had to hope everything went smoothly to catch my train …..I was the first appointment of the afternoon……so no reason why it shouldn’t be……….🙄

The audiologist came and called me. I instantly liked her for her smiley face and calmness. It was then we began the most AMAZING 2 hour consultation.

Yes, I did say 2 hours……she doesn’t believe in 8 short quick appointments so she has 2 hour appointments to get the patient sorted out in 1 go……..instant triple brownie points…….she couldn’t understand why I wasn’t referred to her in the beginning…….

We immediately clicked because I didn’t just want her to solve the problem and send me on my way, I wanted to understand what was happening, I wanted her to explain so, like a child, kept saying ‘Why?’…..which she liked.

She showed me the pictures of my right and left ear and explained what it meant.

The line is suppose to be straight……🙄

Obviously I wasn’t typing as I needed to listen so am typing this as soon as I’ve left starting in the taxi. I continued on my journey and I had the normal sleep, wake, sleep wake later that night, but little images kept coming through from the audiology appointment so I kept adding to this blog, trying to convert the images into words to capture as much as I could and this is the result ……..

She then went through a series of tests with the hearing aids, explaining everything patiently and even drawing me pictures to take home. She explained the problem on a diagram, explaining how there’s a gate between the ears and the brain and my gate is permanently open. When those without hyperacusis hear loud noise, it’s simply a loud noise, when I hear the same loud noise it’s as though a raging bull is crashing through my head. Their ‘gate’ closes, mine doesn’t.

She explained why ear plugs don’t work effectively – because they don’t ‘close the gate’.

Because I’d already had the hearing tests she didn’t need to do them but instead of just showing me the door, she spent the rest of our time asking about dementia and seemed genuinely interested in hearing the answers. She admitted not understanding the connection with dementia, but wanted to know more. Her daughter is autistic and people with dementia have so much in common with those with autism, including hyperacusis …….

The 2 hours flew by. She wrote me post it notes to help remember different things. Stuck a sticky label on on each box to say which to use and which to save. We decided I’d just wear the right one for now to see how I go as the left one was causing more disturbance. At one point she asked me to close my eyes and point to where her clicking finger noise was coming from – I pointed one direction and I was a few inches out – can’t remember the detail but it made total sense.

One tiny aid that could change my world……fingers crossed….might not be for everyone but for me at the moment it’s WOW…..

She could see I had a jaw problem, which I wrote about some time ago and said how that could well be causing the issue with wearing the left one because of one side being more dominant than the other. She adjusted, tested, readjusted.

It’s not that the loud noise is reduced – it’s still just as noisy, it’s just the intensity of the tone that is dulled which takes away the pain ……

I was amazed when she said, that I’ve probably not heard ‘S’ and T’ in words. Which explains why I can’t follow conversations sometimes. But with the hearing guard set correctly, it made her voice subtly different. I didn’t know what the difference was until she said that. It’s like when the optician puts a better lens in front of your eye and the letters are sharper – her voice was subtly clearer. Apparently not everyone picks up the subtle changes so think there’s no difference so no point in wearing them. But my senses are now so heightened so much, that maybe that’s why I did. AND maybe not every professionals takes the TIME to explain what will change in such a clever way as she did……

What I’ve typed probably sounds a muddle and I wish I could have recorded the whole interview to transcribe as everything made sense at the time. We swapped coping strategies for sensory overload, which would come in handy for her daughter. We spoke of the NHS and generally put the world to rights

She then got her 2nd bucket load of brownie points by saying how if I had any questions at any point then here was her email……😳🤩🤩🤩🤩🤩🤩🤩🤩⭐️⭐️⭐️⭐️⭐️👍👍👍👍👍

We finally finished with a few minutes to spears before my taxi and I thought she would say goodbye at her door, but no…….she walked me through the maize of corridors to the front door and made sure I got to my taxi…….❤️

Maybe I’ll wake up and all this will have been a dream, but if not, in that 2 hours, my faith in the NHS was certainly restored by a professional who knew her stuff but was also willing to listen and learn.

While it takes time to get use to hearing aids for anyone, I wore it straight away and whether it was psychological or not, I didn’t flinch when the train pulled in and the brakes squeaked…….now I just need a siren to test it fully………….I’ve already learnt that it’s a good job I have short hair over my ears!

One happy bunny……..and my mood was as bright as the rays beating down as the Humber as I trundled past on the train to Newcastle……

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

22 thoughts on “Second Audiology appointment for Hyperacusis……..WOW!

  1. That’s fantastic, Wendy, so glad it looks as though it will help. I also struggle with loud noises, resulting in both pain plus an overactive startle reflex. Have spilt many a cup of coffee, because I jump so severely when someone in a cafe scrapes a chair, or drops some cutlery. Good luck, would love to hear how you go with the new hearing aid.

    Liked by 1 person

    1. Really enjoyed your very clear description of your visit. Great to hear you had such a sympathetic and knowledgeable professional; sounds like it was mutually beneficial. All the best.

      Liked by 2 people

  2. What a fabulous story…… so positive and encouraging. Our NHS at its best too! I sincerely hope that it will help others to understand that they may too have this condition. If I thought u has this condition after reading this, then i and would make some notes of your experience to ask for the same of their NHS professional. Maybe it will make the appointment that bit quicker!. (lol)

    Liked by 1 person

  3. TWO Wonderful Professionals, you and your audiologist. Professionals in communication and caring. I think I now understand why my ordinary ageing hearing loss (corrected) is also just too much sometimes and without say the bass/treble balance we tend to like in classical music. Without aids no useful sounds, with aids a wooden chair on a stone floor is tooooo MUUch (imagine dragging heavy wooden chair on a stone farmhouse floor, too heavy to lift! ) I will talk to my hearing guy about the guard, not a term thats been used, but he knows I want that subtle clarity improvement (speaking as an ex optometrist!!!)
    I also like the determination to wear the aid from the get go. I hummed and haahed about building up wearing time, but thought, – I never wore a bra for a bit until I got used to it.- (but like with my h – aids on swimming days I sometimes go without till later in the day.

    Liked by 1 person

  4. So glad you’ve got some help at last. I know when we were at Woodbrooke together that we were sat opposite each other during a meal. The bell Fabian’s you immediately grabbed both your ears in pain, even though the bell had not been very loud. It was clear that you were experiencing hypersthene. I hope you’ve found your solution xx

    Liked by 1 person

  5. Again, a wonderfully clear and explanatory piece. I know you say of you know one person with dementia, you know one person with dementia but I believe your insights help me interact with all sorts of people and hopefully be a bit more intuitive. Great your specialist brought her insights from her experience which is why she was so good and doing so much good.

    Liked by 1 person

  6. Thank you so much for sharing. As someone who has not experienced the hearing changes common with dementia, but would like to understand them, your description is wonderful! The parallels that you and the doctor discussed should help find more to read as well!

    Liked by 1 person

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