I was wondering what were your experiences of health care specialists in dealing with your T. My GP has been great and very supportive. He has been quick to refer on to both the local hospital ENT and to the one in London. He arranged for a brain scan to rule out anything else more sinister.
I did see a locum one once as an emergency appointment. I was climbing the walls and didn't know what to do. She told me it was a benign condition and not to worry about it. As if it was that easy.
My local Head Audiologist gave me a 15 minute CBT session . He said that the NHS did not issue masking devices and told me to ignore the T. Again, a very simple solution.
However, I did see a lovely ENT doctor who had "compassion". That made all the difference. She made a referral for the fitting of masking devices and for my GP to send me to ENT London. She said that if anything gave even 1% improvement then it was worth trying. It is amazing what a bit of caring can do.
The ENT in London is clearly the place to be seen. They did a lot of tests and found that there was a delay in my one side of my brain in processing sound. Very high tech indeed. They arranged for both Hearing Therapy and to see a psychologist.
I am still on my journey to live with T and hopefully I'll get there. I have met some fantastic people along the way who genuinely care about my condition. People often forget about the importance of TLC with our condition. I am not after "hugs and kisses" but a bit of acknowledge of our struggles would be nice.
It does seem to be a bit of a postcode lottery. How has it been for you?
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ade-the-pade
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hi adeosoba. im in edinburgh had T for 41/2 years now when i first went to gp she examined ears found wax so i had to hav e that removed first so after afew weeks waiting to get that done she gave me an urgent refferral to e,n,t, in edinburgh they eventually wrote back saying i wanst urgent and would get app in due course i was cracking up but my g.p. was very understanding and helpful 6 MONTHS LATER i got app with e.n.t. which was one of the worst experiences i have had . no real help tottaly bad atitude no compassion very abrupt i felt worse, told me" it seems your ears are not s strong as other peoples" which really cheered me up anyway i had to wait another month for another app which was no better and the audiologist was an hour late for it so next app i asked to see someone else this person was much nicer and had abetter way to deal with things as i thought at the time but one day myT was going crazy so i called edin. audio. to try and speak to someone when i was offered a cancelation app for next day! on meeting audiologist i was told"you shouldnt be here,you shouldnt have got that app. souhld have went to someone else" i was stunned ! i saod my T is raging she siad" you shouldnt be hearing it up front now" theres obviously something else going on so illrefer you to a psychologist" i waited a year on that app. which did me no good at all i also went to sress control classes which were equally useless . but i had joineda T help group and met head audiologist from glasgow who said come and see me, but it took months of my doc trying to get me seen outwith my area in glasgow but i did eventually see him and he was brilliant totally different atitiude than edinburgh, and ive heard sinilar reports from other people who have attended there too sad;ly my audiologist died his replacement is good though and my g.p. has left i think the strain if a busy surgery got to here so i got app with other doc who knew nothing about T and nother said" tes some peole struggle with it" then moved on to another subject so things are not good up here and when i handed in 2 posters for T HELP GROUP , THE SURGERY NEVER EVEN PUT THEM UP ive now got counselling with another psychologist and meetings with deaf peoples help group g.p.s in general are not interested as they cant cure it and goodness knws whats going on with eE.N.T. depts. cheers craw.
My ENT doctor had Tinnitus so no sympathy there😤 Medical professionals haven't got a clue. It is the brain sending wrong signals to your ears. Masking it with more noise is the only suggestion. Which is frustrating
I totally agree that a little compassion can go a long way and it does seem to be a postcode lottery getting access to treatment. I have had Tinnitus for 6 years and then went on to develop Hyperacusis, Initially I found my GP to be supportive , as my tinnitus was one sided I was referred to ENT , where I had tests and an MRI which ruled out anything serious. This was all privately through my work. However I was advised I would need to learn to live with the T and was not referred onto Audiology. Now that I am really struggling I have found it very difficult in trying to get an NHS referral through my same GP. I was referred locally and was fortunate to get 6 CBT sessions but was also told masking devices etc not available. I have now asked for referral to ENT in London as I phoned them and spoke with Audiology Department who advised different tailormade treatments are available to meet different individual needs. However this has been difficult with my GP who states I have already had a lot of referrals to ENT ( the two I have mentioned in 6 years!) . Currently I have been advised that my GP is awaiting to hear back from ENT in London if help is available and will go from there rather than me going to an appointment to find out so this referral may not even proceed. I do think that no wonder many of us suffering from T and in some cases Hyperacusis get caught in this ongoinhg cycle of Tinnitus and Stress when gaining access to what may help becomes a struggle in itself.
Best Wishes to you, and all others struggling on here. I do hope we find some relief
I'm having an ongoing battle to try and get some help in dealing with the T. The BTA will tell you that the NHS is the best source of help & support, but I have to say the support I've had has been negligible at best. When I first started struggling with it towards the back end of last year, a name kept cropping up wherever I went as the local expert on the condition, so I was extremely pleased to eventually get sat in front of this guy. It's been extremely disappointing however - I've seen him twice now and the help he seems to be offering is effectively 'well, you've just got to get used to it'. I've explicitly told him I have been having regular suicidal thoughts as a result of the T and it didn't raise even a flicker of interest or concern from him. It's got the point now where I'm virtually begging him for help as, as far as I can see, if I hit a brick wall with him, there’s nowhere else I can turn, other than paying thousands (which I don’t have anyway) to private practitioners.
I understand they have limited resources but tinnitus just isn’t enough of a priority for them to allocate more resource to it.
I understand how difficult. It is I'm actually. The same I have anxiety. Though the day does stop I'm having to take Sleeping medication. Just so I can sleep and I have suicide thoughts aswell my t is that bad all I do is 😢. Still. Waiting for ENT appointment can you get to sleep with your t
I do alright on sleeping, that's never really been an issue for me with the T thankfully. I have the Oasis sound generator on all night with the pillow speakers ('distant thunderstorm on a remote lake' is my usual), but even before that I was able to sleep OK. Small mercies.............
Sorry what your going though I'm the same I can't cope with my t it's driving me fucking nuts I have suicidel though a well what's helping your tinitus x
Hi Ade and everyone, my journey - Shropshire - was :
T came the day after a major op. I thought it was just the after effects which would wear off. A few days after discharge from hospital it got worse. Phoned GP who just said that there was no cure and prescribed useless tablets.
It worsened further - as well as recovering from the op - so I was descending into the hellhole of T. Made appointment with female GP, who shouted at me (the whole waiting room must have heard) and told me I should be ashamed for feeling suicidal and that it was like losing both legs and I would have to get used to it. I asked for an ENT referral, which would have been months away, so I paid £170 to go privately and was seen the following week. The ENT, who is a well-respected surgeon, clearly had no clue what to say or do about T. He said there was no cure and referred me to his tinnitus clinic. At the end of the appointment he put a tuning fork on the top of my head!
I saw the T clinic, NHS of course, the following week. They were marvellous. I had the hearing test - slight high frequency loss in one ear and was given a hearing aid and masker. I went back every week for a few weeks,
and the audiologist helped me to cope. As far as my life was concerned, I believed it was over and wanted to fall asleep for ever, thoughts I had never ever had before. After a few weeks, I noticed that sometimes I hadn't heard my T ....... and so it went on. I also went to CBT but I don't think that made much difference. I have for most of the time got used to the T and either don't hear it or it is very quiet. Sometimes it is so horrible again, but not as bad as it was during the first 6 months, when the pain in my head was like a thumping headache which crawled all over my head. Time heals and we have no option but to cope.
This forum and the BTA are what helps the most. We are all in it together. I really thought that I was alone in my suffering, but we aren't.
I no what your going though I with that I go to sleep and never wake up I have that every night I have though about suicid Not nice feeling to me that's the only option
Hi Boo, yes I had those awful thoughts. But it will get better, it takes time. I thought my life was over and the whole of 2015 doesn't exist for me. Now, my life is almost back to normal. Hang on there. Read all the positive posts on this forum - there are many survivors on here. Best wishes, Angela xx
I am really pleaed that you ended on a positive. Life can recover. I call in my ."new normal" I still have bad days but my family keep me going. Many of us have been in the dark hole and know how bad it can get.
Hopefully others will read your story and be inspired to fight on
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