The truth is that we need more research!

[LeandroMack]

The truth is that we need more research and we need more exams, exams capable of seeing the middle ear and cochlea internally while alive. It is not possible to visualize the internal structures of the cochlea while alive, nor is it possible to visualize the middle ear in most cases. Tinnitus has a cerebral component that is also difficult to understand. While other diseases have billions, we have few researchers on our side. Tinnitus is worse than cancer for many, scientific and medical society needs to change this idea that it is just a "symptom". The lives of millions are destroyed. After a sinus infection that affected my middle ear, I have no hearing loss, only in high frequency, but today I have three terrible tinnitus and I can't even work properly.

[Terence1955]

(moderator's note - trigger warning - post discusses suicidal thoughts)

i agree the mental anguish is unbearable at times , enough to consider taking your own life

[Untold in reply to Terence1955]

(moderator's note - trigger warning - post discusses euthanasia)

Spot on Terence. If we had assisted dying in the UK, I wouldn't be here to write this.

[TinnitusUKPat Partner]

Research is needed - there is no doubt about that. There are upwards of 351 specific hits on the Clinical Trials.gov pathway, with one of the most recent being the TIDE (the Tinnitus Detection) Project - clinicaltrials.gov/study/NC...

I mention this study because one of the principal researchers is speaking at our conference next week, which annually brings together leading voices in research to share progress and findings.

What I'd say to Leandro is that it's noticeable that you say that you have no hearing loss, and then immediately qualify that by making the caveat that its high frequency loss. That is by far the most common reason people develop tinnitus and one of the more treatable ones by some distance. Please don't disregard audiologists as a potential source of significant help and relief for your tinnitus.

[Fruitandnutcase]

Strikes me that doctors don’t seem to realise how annoying tinnitus is.

Fortunately for me even though it is there all the time and changes sounds etc I just find it is annoying and I’ve kind of got used to it.

I also tend not to notice it so much when I am doing something although it is always there so for me it is just annoying rather than it gets me down - like a nasty little friend who is always whining away in the background.

The audiologist I go to for microsuction noticed that something on the photograph she took was different to previous photos so to cut a long story short I was referred to ENT.

The consultant couldn’t have been less interested if he had tried and made me feel a total fraud to the extent he asked no questions and I was so stunned I forgot to tell him of my history and was out the door in no time.

As a concession as I left I asked about hearing aids - I feel as if I can’t hear even though the hearing test appears to say otherwise so big deal he said I ‘could try a hearing aid’ and made an appointment to go back and get fitted with one - ONE!!! hearing aid because I had a slight loss at higher frequencies

To cut an even longer story short I saw my GP last week who wasn’t much better - it felt like she was the guardian of the practice budget - however she has re referred me to get them to ‘look again’ (dare I say it properly!) mainly because I said ‘Well if it isn’t A and it isn’t B and I still feel dizzy and have constant tinnitus what do YOU think is wrong - because there is obviously something wrong’. She asked if I’d had a scan then said she’d refer me. Probably to get rid of me. My ten minutes was up. So I’m going back to ENT again.

This time I’m going to write out a list of symptoms and work through them with whoever I see. However I do think it is difficult to get doctors to take an interest in tinnitus.

I hope you can find a way to come to terms with your tinnitus, how long have you had it and have you been seen by ENT? From my own experience it appears to be one of those departments where you have to persist to get anywhere. I went totally deaf in one ear about ten years ago - saw someone in ENT - ‘wax’ she said, ‘goodbye’. This time was pretty much ‘hello, goodbye’ too but next time I am going to be prepared with my list!

As TinnitusUKPat says don’t write off audiologists - I found them to be the most understanding even though the consultant wasn’t in fact he suggested I try hearing aids - the one hearing aid I have helps a bit - even though it wasn’t intended for that so when my appointment comes up again I’m going to push for a scan - and another one for the other ear.

Try not to give up though - I wonder if you could get involved in research although I’ve no idea how you would go about that. Best wishes to you anyway.

[Mille23]

I agree with you very much.

I got tinnitus after a syringing and an Inner Ear middle infection. I have an age related hearing loss in the high frequencies. My normal hearing is fine.

I am 68 years old. Tinnitus has gotten worse over the years.

Have you heard of tinnitus quest. .?

Our Danish tinnitus researcher and psychologist , Martin Jensen, has introduced us to this new approach. Hope it will make a difference. 😊

[LeandroMack]

Tinnitus quest is a good initiative, but very small given the problem, millions suffer and we don't have a fight like against cancer, for example. Science knows so little about tinnitus and hyperacusis that it is scary and impressive that we are in 2024, I see more horizon for curing blindness with neuralink than any effective treatment for tinnitus. Lidocaine, electrical stimulation, a few things have some results, but it's very little. I wonder how I will live another 40 years like this.