We Tinnitus sufferers walk a daily knife edge upon which one slip can often start the old familiar hissing, ringing, crickets chirping – whichever sound drives you incessantly nuts.
Those who live with a Tinnitus sufferer are subjected to their loved one’s fear of any ramped up or unexpected noise. That is, if the sufferer is lucky enough to live with someone who understands how draining, annoying and depressing having Tinnitus can be.
For the uninitiated to the joys of Tinnitus (and I hope you stay that way), Tinnitus is defined as “the sensation of hearing ringing, buzzing, hissing, chirping, whistling, or other sounds”.
“The noise can be intermittent or continuous and can vary in loudness. It is often worse when background noise is low, so you may be most aware of it at night when you’re trying to fall asleep in a quiet room. In rare cases, the sound beats in sync with your heart (pulsatile tinnitus).” (WebMD.com)
Generally I find I can put up with my Tinnitus (a high pitched hissing in both ears) but if I am subjected to a sudden, loud or unusual noise, I have what is known as a ‘spike’ – a period of time in which the noise of my Tinnitus increases dramatically and I panic about whether it will go down again or if this is my ‘new normal’.
To someone who does not have Tinnitus (or ‘T’ as it is reduced to, although sadly not the noises it produces), it is extremely hard to be sympathetic or to get a sense of what it is to feel like you are a radio antenna constantly picking up static.
You only have to read some of the posts from sufferers in the Facebook Tinnitus Forums.
Well, I am here to say you are not mad, you do deserve to be listened to and the Medical Profession seriously needs to, how shall I put this, get its ‘arse into gear’ to find a way to help relieve the untold misery many sufferers endure daily.
At best we have a whole army of pseudo medics offering oils, potions, meditations, white noise, vitamin supplements – you name it, it would probably have appeared in the market scene in Monty Python’s “Life of Brian”. Believe me, if a gourd would help, we’d all have one.
Let me share the sounds that have given me a Tinnitus spike this week.
* church bells
* someone leaving the volume of our phone handset on full
* the car (travelling long distances always sets my ears off)
* car doors slamming
* a hairdryer
* hand-dryers in public toilets (I really hate those)
* kids screaming in the back of the car
* a steam train whistle
If you have hearing loss-related tinnitus which I may have (although I also have mild TMJD too), the brain is constantly on alert and seems to like to fill in the sounds you miss. It also acts like a fire alarm when you get stressed and ramps up the sound of your Tinnitus to warn you.
Half the time I think it is the fear of your Tinnitus getting louder and more persistent that, well, gives you Tinnitus. It’s a vicious circle. You hear a sound. You worry about the effect and, ooh, listen – there’s your Tinnitus.
It is so important to have a supportive partner who can tell you that you need to be calm because your spike will go down.
Actually, it’s quite useful to keep a diary of your spikes so you can prove to yourself that yes they do go down, except I suspect that it’s of more use to change your focus.
That, in the absence of a medical cure for most of us, is the key to surviving with this blight.
I’ve read a fair few posts lately in the Tinnitus Groups from sufferers who say they don’t like to admit to having it – or fear the reaction of others when the admission is made.
I have no compunction whatsoever about being honest about my medical failings and, really, keeping the problem to yourself does not help, nor does it help those who may also be suffering from Tinnitus but who are too shy to admit it.
Acceptance helps a little, as does having realistic expectations. On holiday in a strange place, it is quite likely that you will come across a range of sounds outside your usual experience. Carrying musicians earplugs helps so that you can whip out a pair and plug your ears if the noise is too loud.
A holiday is a time to make sure that you are diligent with your self-care. If you know your ‘T’ gets worse with lack of sleep then make sure you get enough kip. Similarly, if you find caffeine or too much salt can affect you, don’t go overboard on the espresso or take-aways.
Sadly, you don’t really get a holiday from your Tinnitus but just remember this – spike may come on holiday with you – but I’ll bet you can leave him behind when you come home.
Read more about my battle with Tinnitus in the posts below:-