Magic wand anyone?

[Jellybeanz_]

Hello Everyone,

The tinnitus has flared up to its very worst in the last three days and I am at a loss as to how to get it manageable again. I have one hearing aid which is used to mask and was fitted with 1 ocean sound. I have no idea why, but it sends my tinnitus through the roof. Although it masks the lower frequency sounds I now have an incredibly loud high pitched sound which seems louder than anything around me in both ears. I was told that I could use the Oticon aid to link with other devices so that I could listen to different sound sources, but I can't get it to link to anything. I have been discharged by the audiologist and have a review with a hearing therapist at the end of October. My GPs have told me to stop bothering them because 'it's all in my head'. Not sure what to do next and feeling like a failure

If ever there was a time for a magic cure it's now!!!

Any thoughts?

[Ruud1boy]

Don't know how long you've been struggling with T, but the early days - and by 'days' I mean the first year or so unfortunately - are usually the worst. There is no magic wand unfortunately, other than gritting your teeth and getting through it. Do all the other stuff - understand the condition, surround yourself with low level background noise as much as possible, learn relaxation techniques - but time is usually the key to the problem easing.

[Jellybeanz_ in reply to Ruud1boy]

Thank you, it's good to hear from people who get it, as in understanding how troublesome tinnitus is when you're at the end of your tether. I have had it for more than 15 years but only in the last 4 or so has it become problematic. The more I find out about tinnitus the more frustrated I get with being dismissed as a whinger! I always thought tinnitus was a modern day problem but apparently the ancient Egyptians documented tinnitus.

Nicola

[Ruud1boy in reply to Jellybeanz_]

I often think it'd be useful to have a tinnitus 'simulator', so anyone that dismisses you as a whinger could spend 24hrs listening to the racket going on in your head - see how dismissive they are after that!

[Jellybeanz_ in reply to Ruud1boy]

Absolutely! And the exhaustion of trying countless methods of not focusing on it. I know there is a way of measuring the perceptual volume of tinnitus, but it's taken nearly 4 years to get to see a GP with 'special interest'.. Who was not particularly interested.. Not been seen by consultant at all and have had requests for a second opinion flatly refused. So I am back to square one and the dips of managing something which causes such distress when it flares up, on my own.. Good job I was built sturdy!

Nicola 😀

[Angela-H]

Hi jellybeanz, how dare GPs say that it is all in our heads! Yes, of course it is, or our ears, or both! It is possible that the sound on your hearing aid is irritating your tinnitus and we all have to find our own sounds to help us habituate. I always write down what I need to ask whenever I go to any appointments, whether the GP or audiologist etc., as it is so easy to feel rushed and forget what we need to ask. Love, Angela xx

[Jellybeanz_ in reply to Angela-H]

Thank you Angela, I have been discharged by audiology, so would need rereferral from gp and have been refused. Have also been told to stop bothering them as I am fixated on myself and other people manage perfectly well! They have basically called me a hypochondriac. No other surgery for 15 miles. I agree the sound seems to trigger the tinnitus, I didn't know it could and thought it was me being hyperaware. Back to square 1 with relaxation etc..

Nicola 😀

[Angela-H in reply to Jellybeanz_]

Oh Nicola, that is so awful! If I were you I would go back to another GP and show them this forum, to show that no, you are not fixated on yourself; you are not a hypochondriac and there are many of us having a daily struggle with this beast. My GPs and ENTs were b----y awful too, but I had an excellent audiologist who helped me through the early stages of the battle. I live in Shropshire and we have two hospitals who have good audiology departments - in fact, I am shortly going to phone mine for an appointment to have my hearing aid tubes changed, which they recommend happens every 4 to 6 months.

Perhaps the lovely people on the BTA Helpline can advise you on your next steps, given that your GP surgery has left you high and dry? And, maybe, someone else on this forum will come along with other suggestions. Love and best wishes, Angela xx

[Jellybeanz_ in reply to Angela-H]

Thank you Angela. I am actually planning to move in the near future as the healthcare in general locally is pretty dire and getting worse. There seems to be a culture of giving a pill for an ill and if that magic doesn't work then it must be the patient at fault! I am lucky to have been blessed with a good sense of humour and generally I eventually find humour in most situations. Sometimes, however, I do find myself wondering why this thing should have descended on us all. It has managed to affect most parts of my life!

Nicola