Was so relieved to finally have my ENT consultation yesterday for the consultant to dismiss the vibrations I feel in my head in relation to certain sounds and the brain zaps I have when falling to sleep as anxiety. Also when I explained how my tinnitus itself has worsened since it started Over 2 years ago he suggested that it was my perception of the tinnitus that had worsened the noise in my head not the tinnitus itself that had changed which I find so hard to believe
Was hoping for scans or some investigation as to why I might have tinnitus and why it is getting worse but no such luck.
Only positive is that he is referring me to a tinnitus clinic. Anybody had support from a tinnitus clinic and how did you find it helped?
Over 2 years into this journey and losing hope that I will ever fully habituate. Feel that my tinnitus is worsening over time and certain that is not just in my head.
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Liamovy
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Yes certainly not in my lifetime. Default medic strategy is to call for another test or wave it off as OP said which is disgraceful. But they have no other options but to save face.
I’ve been all over the site and there is no part of it that states they fund research, indeed they ask for donations, state that the government should fund at 1% of the health budget and have the most recent post of 2023 talking about a bio bank database but no update in March 2024 so I guess the sentiment remains that there is little being done to find a cure beyond the hearing aid blockers, meditation anx learning to live with it - probably because you can not see any physical breaks therefor impossible to prescribe a splint or cure.
I am lucky enough to live in an area that has a tinnitus clinic. I see them every six months to review my concerns, changes in the T and also update on any activities that might help.
I have to say that they are brilliant! They listen to my concerns and never once dismiss anything that I say. To be honest, that is their biggest help- someone who listens, doesn’t rush me out of the door, dismiss or make jokes. They are the first medical professional that I’ve met that actually care and seem to understand how debilitating T can be. I can’t rate them highly enough.
I’m a life long T sufferer and one thing I would suggest is that you let go of trying to find a cause. I know that’s easier said than done, but it may be holding you back. Sadly it is what it is. You will have good days and bad days. Try to look out for triggers that may make you T worse and look into what might be helpful.
My T is like a pesky imp and it changes frequently so it’s good to have a range of support tools.
Acceptance of it being part of your life is a massive step and I’d say that if you can try to keep a positive attitude that helps too. However, this is more a ‘do as I say instead of what I do’ point because I am definitely not there yet!
Lastly, be kind to yourself. Rest when you can, do something that you enjoy and look forward to. Managing T can be exhausting, stressful and full of hidden challenges that other people may just not understand. You have to be your own advocate and if you are struggling take time for yourself.
Thank you so much for your response. It’s helps considerably knowing that you have had a good experience with the tinnitus clinic. Gives me a bit of hope and I know positive mindset is half the battle so thank you again. Xxx
I found my own time with the ENT similar, except I kept having to ask him to repeat statements so I was sent to audiology. Audiology referred me to a counsellor who, well it's hard to explain, maybe they were having a bad day, but after 1 session I felt worse! Needless to say I didn't go back.
ENT is almost a procedure to check there's nothing worse - would have thought they would have CT and MRI scan to check for anomalies which appears the norm - I had this and was reassured by having these.
I hope you find something to help soon, sure you will habituate
Yes I was so disappointed to not get a scan as I think this would have at least helped my anxiety which I hear is half the battle with tinnitus: Hoping I find help with the tinnitus clinic. I take comfort in this forum hearing all the people that have learnt to live with it and no longer distressed xx
HI! You can ask for a second opinion. Ask your GP to refer you to a different consultant. Tinnitus is low priority for the NHS (or you need to be lucky to have the right postcode) your other option is private but it is not 100% you get a good consultant either. I wasted £180 just to be told "its early days.."
Funnily enough I had a private appointment booked for tomorrow but managed to get an urgent referral with NHS earlier with my tinnitus being pulsatile at times. turns out I would have had exactly the same consultant privately as spire are currently helping out the NHS here so would have been fuming if I had paid the £180 to be told what he said!!! Xx
Hi, just chipping in here - if you are being referred to Spire then I may be in same region as you - if you are, don't expect anything here if you get the consultant I think you may get.
I didn't have a great experience with the NHS consultant either. To be honest, he was vaguely interested in the tinnitus but not in my other complaints. He referred me for an MRI scan to look for an acoustic neuroma (because my tinnitus is worse in one ear) and also to the Tinnitus Clinic. I only went to the clinic once and, like Crazylady6, found it a very good experience, mainly as an opportunity to discuss my issues with someone knowledgeable and sympathetic without being rushed out of the door. I also found my private ENT consultations good in that respect and worth the £200 per visit, although she didn't have any magic solutions, suggesting hearing aids for the tinnitus (which didn't really work out for me).
Are the vibrations in your head in response to certain sounds actually in your ears? Could it be a muscle? I ask because I had this (and still do to an extent). The NHS consultant dismissed it as 'rare', but I believe it to be a touch of a thing called TTTS. I actually believe that some of our issues are in the domain of Neurology rather than ENT, which could explain why the ENT specialists seem a bit lost with what we describe to them.
Really good that the tinnitus clinic helped, hoping the waiting list isn’t too long. And yes the vibrations in my head are in relation to certain sounds in my ears and usually happen in an evening maybe because I am more tired or less distracted. Never heard of this TTTS I will look it up but reassuring to know I’m not the only one who has this!! I agree this seems more neurological than ENT have some blood tests next week so will see what results are then probably go back to doctors for giryher investigation gtom s Jon ENT you’re. So did your vibrations improve with time? Xxx
My 'vibrations' were a movement or fluttering in my ear in response to certain sounds, especially certain frequencies and, annoyingly, sounds in people's voices. It was variable from one day to the next. It plagued me for more than three years and I still get it a bit now. There was a big improvement when I started to take multi-vitamins and minerals tablets. I still get spontaneous flutters (with no provocation) and other ear symptoms, as well as vision symptoms. I think there's some sort of problem with my nervous system.
Yes I genuinely think there is something wrong with my nervous system. My vibrations are not consistent and tend to be when I’m in a quiet environment and there is a low frequency sound my ears / head somehow react but not always! Just out of interest was there any specific multi vitamins or minerals you tried hadn’t thought about that but might be worth a try xx
I found that my issue was worse with a quiet background. If there was some background noise, it somehow prevented the effect from being triggered. It seemed like the 'contrast' had something to do with it. I take Superdrug A-Z multi-vitamins and minerals. I now wouldn't be without them for fear of what might return if I stopped taking them.
Many folks here will be familiar with the Treble Health YouTube channel - this is their blog guide to Tonic Tensor Tympani Syndrome: treblehealth.com/tensor-tym...
sadly I’ve never heard of anyone that has has a positive meeting with an ENT Consultant regarding tinnitus. I’m sure there are some people, somewhere. But I don’t know where. My appointment with ENT was a joke, and Doctors aren’t interested. I saw a Dr last week and mentioned my tinnitus and the Dr said the best thing is to ignore it. My tinnitus is louder than my petrol lawnmower and vacuum cleaner. I wonder if that fool could ignore that noise in his head?
So sorry to hear that. My tinnitus drives me to distraction but nowhere near as loud as yours. And I agree getting any grp seems to be a joke unfortunately. I really hope you can find some reprieve from yours xxx
I've had tinnitus for many years and have always manged daily life without too.much trouble but for the past 12 months plus my tinnitus has worsened to the point that my working life is unbearable as I need to concentrate and analyse information for long periods of time. Like you, my GP told me to ignore it and asked if I had tried playing some background music whilst I work ! My T is so loud I need the background music cranked right up which isn't exactly great for a job reading and analysing information 10/12 hours a day but yes, surprisingly, I had tried that!? I'm now waiting for an audiology appointment but having read the posts on here I'm not expecting anything to come from that to help my work situation. Tinnitus clinics sound helpful so will look into that but really does seem like there is no obvious solution to managing T as far as my job / career goes. Does anyone else manage chronic T in a mentally demanding job and if so how ?
I’m retired, and lead a quiet life, no pun intended. But my tinnitus is worsening with every passing year. Why, I’ve no idea. I was referred to a tinnitus clinic at my local hospital but was then told there wasn’t one. The tinnitus expert at the hospital said I could read on the internet everything he could tell me, so there was no point seeing him.
Hi - as you know Tinnitus is not coming from your ears but your brain - nervous system has gone into overdrive and if all physical causes ruled out i.e, wax, then unfortunately we can make our T worse from our lifestyle or our own anxiety, i am speaking from personal experience, please do not lose heart - whilst there is no medical cure we can do things to alleviate T and reduce/eliminate it, its your body telling you there is a problem, please source Julian Cowan Hill on YTube or download his amazing app, Quieten, he had T for 20 years he now helps others - the more you learn about what causes T the more you can help yourself to recover, i know how hard it is but please be assured there is help.
Try meditation to calm yourself, when it is bad concentrating on breath can take your mind off the noise, I use "Headspace" and Julian Cowan Hill on YTube or download his amazing app .
Despair only leads to more noise; I also have hearing aids but getting some NHS consultants to understand you use them to reduce noise can be difficult!!
I live in Leicester and had an appointment with a senior audiologist at an ENT clinic two weeks ago and found it to be very helpful and informative. I have T in my left ear only and some hearing loss as identified by an online hearing test (RNID). I have been referred for a scan to rule out a physical cause (apparently 1% of single ear T is caused by a nerve being compressed in the inner ear). I have also been referred for a hearing aid in my left ear as I took a test at the appointment and the audiologist explained the results clearly.
I have the free MindEar app (other apps are available) on my phone, which is excellent in providing an explanation of T and habituation. I use MindEar at night for sound therapy and was advised not to access this through earphones as it can exacerbate the T. I also have a Neom pod (other pods are available) and use scented oils so that I focus on what I smell as opposed to what I can hear.
It's very unfair that it seems to be a post code lottery in the level of advice and support available but I would urge everyone to attend an appointment when offered. I wasn't expecting a lot from my appointment but I'm glad I went.
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