29 June, 2015

5 Things People With Tinnitus Want You To Know

My ears are buzzing. My tinnitus is back and it’s so ridiculous.  The trigger for this latest tinnitus spike?  A hand-drier in a toilet yesterday lunchtime.  Whether or not it affected the volume of my tinnitus cannot be proved;  what it did do was focus my attention on sounds I try hard to ignore on a daily basis.

Solitary man high up on rock

5 Things People With Tinnitus Want You To Know

I put my hearing aids in today (I have a mild hearing loss).  I have been told that I need to wear them so that my brain gets used to full-on sound again, with the bonus that the increase in background noise may drown out the tinnitus – or at least change my focus. And, honestly?  It did make a difference.

Depressingly though, I take them out and wheeeee it’s back.  Yes I know I will need to wear them for months.  To retrain my ears but it’s the emotional impact that is often hard to deal with.

In case you don’t know what I’m talking about, tinnitus can be described as sounds a person can hear from inside their body rather than from an outside source.

Although it is often described as ‘ringing in the ears’, sounds can take the form of buzzing, humming, grinding, hissing, whistling or sizzling. Some people describe it as sounding like chirping crickets. Sometimes, the noise associated with tinnitus beats in time with a person’s pulse. This is known as pulsatile tinnitus.

Tinnitus can often have a significant impact on day-to-day life, such as affecting concentration and cause sleeping problems and depression.

If you think tinnitus is some airy-fairy, minor physical niggle, take a look at the tinnitus groups on Facebook and you will be staggered by both the degree of suffering endured and the immense spirit that some sufferers manage to find.

Here’s what I suspect many of them would like to say to you.

These sounds are not ‘in our imagination’

Focusing on something else is a skill that has to be learned.  We cannot just “do something to take our mind off it”.

We may not sleep well

This will make us tired, grumpy and irritable.  Some of us love to sleep because it’s the only break we get.  For others, the quiet of a bedroom makes things infinitely worse.

We miss silence

Oh boy, do we miss silence.  Sometimes sufferers report that their tinnitus may vanish for random periods of time (although it generally returns) and they get a glimpse of the silent bliss now denied them.

We don’t care if it sounds like quackery

We will try anything to get some peace. Obviously, this makes us a ripe old target for scammers and snake-oil merchants but it’s known that the placebo effect is immensely strong.  If we think Gingko Biloba, acupuncture, magnesium baths, vitamin B6, Homeopathy or anything else might help, support us.

Don’t tell us “it’s just stress”

No, it isn’t. We’re stressed because we have tinnitus, not necessarily the other way round.

Thankfully we have organisations like the British Tinnitus Association to offer support and guidance but the feedback I generally glean from the various forums is that tinnitus is rarely understood and frequently treated with a complete lack of sympathy from ENT Departments and GPs alike.

It is even harder for the loved ones of sufferers to understand and deal with.  The Husband is as sympathetic as he can be but his approach is to focus on something else – so, so difficult.

I guess sufferers feel like I do, that tinnitus is a curse.  Why me?  must be the silent (ah the irony) refrain of many.  We search to understand what caused it and any sniff of a cure, however flaky, makes us light up like beacons with long-suppressed hope.

There are so many people suffering from this now, not least those returning from military service, those who have had car accidents, those who have had industrial injuries and those who suffer from hearing loss.

Yes.  Tinnitus is not fatal but the misery it causes sometimes is.  On that basis alone, tinnitus sufferers need to band together and demand more research and push for solutions that are clinically tried and have proven efficacy.

I understand that such studies are underway, however, I hope the results and any cure follow swiftly behind.

Read more about my battle with Tinnitus in the posts below:-

The Misery Of Tinnitus – Ring Any Bells?

I’m Buzzing – My Tinnitus Is Back!

If You Have Tinnitus, You Need To Make Friends With Spike

Let The Bells Ring Out For Christmas – Except If You Have Tinnitus

Are You Kept Awake At Night By The Hum?

My Tinnitus On Holiday (Or Spike Goes To Devon)

Tinnitus Sufferers Long To Hear The Sound Of Silence

Tinnitus Sufferers Are You Struggling To Get A Diagnosis?

So Now I’m Choosing Restaurants By Noise Level

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19 comments so far.

19 responses to “5 Things People With Tinnitus Want You To Know”

  1. Damian Thomas says:

    My sister really suffers and finds it utterly frustrating when people don't understand. Raising awareness is great for her 🙂

    • Linda Hobbis says:

      So many people are suffering in silence (pardon the pun!). I think there's a huge need to raise awareness of this issue. Please pass on my sympathies to your sister. It's a rotten thing to have to put up with.

  2. Janie Hawley says:

    Thank you for sharing….It truly is a difficult trial and I am learning to focus on my blessings.

    • Linda Hobbis says:

      It's a daily struggle though, isn't it? I must confess I'm not particularly good at screening tinnitus out yet.

  3. ali thorpe says:

    My mum has Tinnitus and I know from our conversations it is easy not to realise just how much it interferes with one's day. I will show her your post. Thanks.

    • Linda Hobbis says:

      Please pass on my regards. Does your mum know there are quite a few Facebook groups for tinnitus sufferers which can offer comfort and support?

  4. Anonymous says:

    Excellent explanation. My husband suffers from tinnitus so I am aware of the condition etc.

    Hazel Rea – @beachrambler

    • Linda Hobbis says:

      It's often as difficult for the sufferer's loved ones as it is for them – I drive my husband nuts complaining about it!

  5. Tracey Tedford says:

    My husband has tinnitus, thanks

    • Linda Hobbis says:

      Hi Tracey. Is your husband receiving any help / support? Has he told his GP? Men are often dreadful at seeking help for medical conditions I know.

  6. Anonymous says:

    I have tinnitus and it would drive me crazy at times. I try to ignore it wish there was a cure.

    • Linda Hobbis says:

      Have you talked to your GP and asked for a referral to your local ENT specialist? They may be able to help. Also, have you had a hearing test? Often tinnitus is related to hearing loss. Sending you kind regards.

  7. Cardiff Mummy Says says:

    Gosh, Linda, I didn't realise you had tinnitis. It must be so difficult. It's good to read about it though and good on you for raising awareness of what it's like. I hope that more research can be done to help all those suffering with it. x

    • Linda Hobbis says:

      It's yet another age-related niggle I think, Cathryn. There are hearing problems in the family so it's probably linked to that. As long as I can focus on something else I'm not too bad but if you do focus on it, it's very difficult to ignore!

  8. BBKingRue says:

    That article is all about me. I've had screaming Tinnitus and Hyperacusis for over 9 years. too many loud concerts in my younger years. I suffer horribly and can't work and barely leave my house, forget about having a social life. Just going out in public is a hazard. the those hearing devices that are supposed to retrain your hearing, just don't have any effect on me. I live solely on the hope that medical science creates a real cure for this noise in our heads. Living with the sound of a laser beam cutting through a sheet of steel is no way to life my life,. UGH !!!!

    • Linda Hobbis says:

      Sorry to hear this. I find that although people are being offered hearing aids etc there seems to be very little actual medical diagnosis going on – for example MRI scans, thorough investigation of the ear, related issues like TMJ or even back problems. That's what is really needed – 'joined up' physical investigation – otherwise medics are just guessing. Have you joined any of the support groups on Facebook? I find them comforting although there is a risk you end up thinking about your T!

  9. Anonymous says:

    I have had tinnitus and hyperacusis for about 8 years now. I don't know which is the worse, especially because they seem to interact. I wear customized earplugs, which were hard to find and get used to and I had to pay for them myself, whereas hearing-aids are for free (grrrrr!). I have adapted and hope for a final cure. Most frustratingly: I have ideas about how it came about and in case of the hyperacusis what might be a possible solution. BUT WHO WILL LISTEN AND TAKE ME SERIOUSLY? It's the doctors again, of course, how could I as just a patient suggest any cure??? GRRRRR again! Thanks for sharing though, always good to find recognition!

  10. Angela Henman says:

    I have tinnitus in both ears constantly. Any loud noises increases the noise 100 fold. My Husband does not understand the impact it has on me and when I say I can’t go to a noisy place he looks at me as if it’s a cop out. He likes to go Greyhound Racing and there is a lot of Stag and Hen parties there as well as people that shreek and scream for the hell of it. This is absolute torture to me and he just doesn’t get it. I feel alone with this.

    • linda says:

      Angela, I always carry a pair of musician’s earplugs (mine are Alpine ones from Amazon). As soon as the volume ramps up in they go! School concerts, theatre, cinema anywhere. They will block out the worst of the noise but allow you to still hear conversation. They’re about £18 from memory but they’re life savers. You honestly are not alone.x

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Midlife mum from Cardiff. Wine Imbiber. Likes glitter, fluff and olives. Approaching tweendom with Caitlin (11) and Ieuan (10). The husband is hiding in the loft.

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