My Early Onset Hearing Loss: I lost my consonants & I’ve trouble with my vowels

It’s funny, isn’t it, that we think nothing of wearing glasses (well, I do, as you might have read about my OCD problems here) but early onset hearing loss is a completely different issue that seems to be rarely talked about.

About three or four years ago I went for a routine ear clean at the University Hospital of Wales (I actually have a loyalty card for that hospital now) and was given a hearing test which showed I had early onset hearing loss – a mild to a moderate hearing loss at mid-frequency in both ears.  To say I was horrified at being diagnosed with a hearing impairment is an understatement.

early onset hearing loss - woman wearing a hearing aid

I could not believe it, despite the fact that I had been wearing glasses since I was 11, setting a precedent for my body’s ability to have one or two slightly ropey bits.  I was offered one hearing aid to try and I remember feeling quite tearful.  A few years later, I have two hearing aids, largely to help with the additional irritation of tinnitus.

My mother, whose own mother was one of 12 children, helpfully volunteered that one of her many cousins had “had a bit of trouble with their ears”.  She was, sadly, unable to recall the cause or the degree of the problem.  My paternal grandfather was also quite deaf but this may have been a result from fighting in Burma in World War I.

My tendency with any medical complaint is to seek not only a diagnosis but the actual, undeniable, set-in-stone cause (paging Dr Google!).  As I get older, I realise that things just happen to our bodies. That’s life.

I have to confess that I am still in denial and that I wear them my hearing aids intermittently.  The difference is a bit like switching the world back on.  It’s amazing how much you miss when you can’t hear – the little pleasures of life which are so easy to take for granted.

– birdsong
– rainfall
– a cat’s purr
– the hiss of a coffee maker in a coffee shop
– the tones and additional melodies in music
– TV dialogue which is either too quiet or drowned out by backing music

Worse than these, and why I will get over my reticence of wearing the damn things is that I had forgotten the true volume and pitch of my children’s voices and the sound of joy in their laughter.

Deafness at my level is an irritation.  When I go to a pub (minus my hearing aids) I have to sit next to my friends to hear them or directly opposite to lip read.  I am always telling the Husband off for trying to talk to me whilst looking out of a window.  We are like a comedy double act (me:  “can’t you speak up, you know I’m deaf”, him: “put your bloody hearing aids in!!!).  It’s not unlike one of my favourite episodes of Fawlty Towers with the deaf Mrs Richards where she refuses to wear her hearing aids because it runs the batteries down.

I find that I can hear the vowels in a sentence fine.  It’s the initial consonants I completely miss. The brain, being quite clever (well, not mine necessarily but you know what I mean) spots the gap and fills it for me – with something completely random.

“you want to see that jelly gone?”
“No, mum I want the telly on”

“You want to have a rhubarb crumble”
“No, move those shoes in case Ieuan stumbles”.

You get the picture.  It’s like a highly dysfunctional episode of Countdown.

In all seriousness though, I can see how totally isolating deafness must be.  But I also understand how difficult and frustrating it must be for loved ones.  We need to think a little more, I feel, about how we treat those with hearing problems. We need to develop the patience to listen to them, to explain ourselves, to adjust our volume.  Otherwise, the person suffering the hearing loss feels like they are existing in a huge ocean, where everything is muffled and they are left behind like seaweed on a rock abandoned by an ebbing tide.

So yes,  I need to wear my hearing aids.

The flip side of this is that we need to be so much more careful with our own hearing and teach our children how to protect theirs from noise-induced hearing loss.  I used to listen to a Sony Walkman far too loudly.  I used to listen to my stereo by lying on the floor with my head between the speakers. I didn’t go to too many gigs but I went enough to come out with my ears ringing.

I cringe when I hear people drive by with their car radios blaring or, more commonly these days, people on their car phones with the volume up so loud you can hear the entire conversation.   I’m uncomfortable at the trend for children’s discos (where I find the music too loud)! I can’t believe, either, how loud the volume in cinemas is. I’m told that damage is mitigated by the use of surround sound but I don’t believe it.  Read the Tinnitus boards on Facebook and you will find that many like I do, carry artists’ (musicians) earplugs at all times to protect their ears.

One of the articles I read recently claimed that the number two problem for military personnel returning from war zones (after PTSD) was tinnitus and hearing related problems. Nothing in my league, of course, but an indication of how soul-destroying unmanaged hearing loss can be.

If you think you need your hearing checked, I would suggest you talk to your GP first.  There are also many places where you can get a free hearing test – many opticians offer them now.  There should be absolutely no stigma about wearing hearing aids, as there is none about wearing glasses any more. You will be amazed at how much you may have been missing.

If you have any questions about my experience, feel free to tweet me @lindahobbis or leave me a question in the comments and I’ll answer as honestly as I can.

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Tinnitus Sufferers – Are You Struggling To Get A Diagnosis?

One of the enduring themes I come across when perusing the Facebook forums relating to tinnitus is that sufferers like me really struggle when it comes to a diagnosis.

Leaving aside the perennial confusion about the causes of this medical problem – some say it’s the result of hearing loss, others say it’s a problem with the brain – over and over again I hear that doctors and consultants are dismissive and do not listen to what the tinnitus sufferer is trying to tell them.

Tinnitus sufferers - wall with a sign saying "you are what you listen to"

Photo by Mohammad Metri on Unsplash

I’m sure many parallels can be drawn here with chronic conditions such as fibromyalgia and ME,  where enough is still not known about these problems and, worse, there seems to be little impetus to invest in research to solve them – Lyme’s Disease or Hyperacusis being examples of this.

If you’re not familiar with what tinnitus is, it is an annoying and generally constant sound heard by the sufferer in either one or both ears.  The sound varies in type, tone and frequency but can be a life-altering experience for some.

If you have it, it seems like there is no escape.  Mine is a constant hiss, the volume of which ramps up and down depending on my stress levels or even what I eat and drink. Salt, quinine (in tonic water) and aspartame (everywhere – but especially in diet sodas) being good examples of this.

Tinnitus sufferers typically experience a loss of sleep, concentration and, worse, confidence. Social outings become challenging – for example, music concerts can be a source of immense stress because you worry about the loudness giving you a tinnitus spike – that is a rise in the volume of your tinnitus for hours or even days afterwards.

There are quite a few celebrity sufferers of tinnitus – Ozzy Osbourne, Cold Play’s Chris Martin and William Shatner to name but a few.

If you do manage to get your doctor to take your tinnitus seriously you may be sent to the ENT clinic of your local hospital.  Again, the stories I have heard from tinnitus sufferers usually involve being completely disbelieved or sent off with a “you’ll just have to live with it”.

Or, hearing aids may be prescribed for those of us with hearing loss, some of which contain maskers – generators of white noise which is thought to counteract the sound of the tinnitus, with the distraction giving you a welcome relief.

These do not work for everybody and if like me you have Hypercusis too, all this does is give you a different set of sounds to focus on.

Some tinnitus sufferers are given MRI scans to see if their unwelcome noises are the result of a brain tumour or a tumour on the acoustic nerve.  The whole process is very stressful as of course, the sound of the scanner is likely to give the sufferer a spike.

And, in terms of diagnosis, where do you go if nothing is found?  It may well be worth considering talking to medical negligence solicitors if you feel as if you are getting nowhere. Medical negligence can include but isn’t limited to, misdiagnosis, failure to advise of treatment options, failing to warn of risks, incorrect treatments or surgical mistakes. I think it is so important for us sufferers to stand our ground.

There is, of course, tinnitus retraining therapy and a whole wealth of anecdotal herbal and homoeopathic remedies to try.  Some swear by Gingko Bilbao (which thins the blood), some are fans of acupuncture, still others of CBD oil – in fact, the latter is the one ‘treatment’ which crops up time and time again.

Some sufferers try adjusting their diet by removing alcohol, caffeine, salt and gluten but what works for some doesn’t work for all.

Occasionally news reaches us of medical trials for new drugs or techniques to help cope with a condition which, let’s not beat around the bush, has driven some to suicide.

But there does not seem to be any ‘joined up’ progress.  Tinnitus seems to be treated like something mildly annoying that you just have to live with.

I wonder how it would be if all the sufferers who have been brushed off, dismissed and told utter claptrap had recourse to medical negligence advice.  Because isn’t that what this is?

I have nothing but the greatest admiration for our NHS and yes, I understand that resources are limited and that every illness cannot be given the same level of attention.

But, with the increase in headphone use both recreationally (mobiles and gaming) or at work (call centres) and our seeming obsession with noise everywhere we go, I think we’re facing a ticking tinnitus timebomb – as well as a hearing loss one.

Almost every restaurant, pub and shop seem to be run by those compelled to pound us with thumping music in the by now surely old-fashioned idea that music will change our psychological state and get us so excited our credit cards will be swiping in time to the beat.

Apparently, fast music is used to get us to eat faster and more.  Does that really work?

Personally, if I visit any restaurant pumping out blaring music, I ask for it to be turned down – particularly if there are few diners (probably because nobody else wants to be deafened either).

The chains are particularly bad for this – Jamie’s, Pizza Express, TGI Fridays, Ed’s Diner – and don’t get me started on the retailers – River Island, Oasis, New Look, H&M  – and even Smyths toy store (for kids!) can be a painful experience noise-wise.

These days I carry musician’s earplugs with me in my handbag at all times and ensure I pop them in if the noise ramps up to an uncomfortable level.

If you are lucky enough to get your GP to take you seriously and you do get referred then write a list of questions before you go.  Make a list of the things you suspect trigger your tinnitus.  Think back to what might have caused it.  Did you have a root canal or, like me impacted wisdom teeth removed under general anaesthetic? Do you have another chronic condition which might cause it?  Could it be a reaction to medication?

There are a million possible causes but you deserve to be listened to and taken seriously. The Facebook groups for tinnitus can be dark places sometimes but at least you can ask questions without fear of ridicule and see that what works for some, does less than nothing for others.

You can also contact the British Tinnitus Association for advice.