I have followed this site for a number of years now, during this time I have found that advice given is unproven and normally by the same people, this is unhelpful as there is a complete lack of evidence to what is being said. Bottom line is that audiologists have no answers other than text book unproven theories. Can we not have some inspiring and hopeful answers, rather than recycled opinions.
Same advice : I have followed this site for a... - Tinnitus UK
Same advice
Written by
beaverwood
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well Beaverwood your post isn’t very uplifting either …
There are no proven treatments for tinnitus. What works for me might not work for you. Details of what does work, for some people are detailed on the Tinnitus UK website. The book “tinnitus, fromTyrant to Friend”, by Julian Cowan Hill is helpful.
I’ve found some posts very uplifting.
That's exactly my point, I have had stress, anxiety, cancer, focusing on the sounds, living in cave instincts, flight or fight all blamed at some point without any real evidence of any of it, these reasons put forward bear absolutely no substance at all, but are said by audiologists and then repeated as gospel reasons on sites such as this. If we take the view of not focusing on tinnitus as it makes it worse, then surely spending time on these authorative sites is completely detrimental to us all. Should a audiologists get asked what the cause is, the answer is they don't know, so we are just being fobbed off and expected to believe this nonsense.
Lucky you dont have any bad medical experience, if u show your frustrsfion here, you will be sorryIf u show appreciation to health professional thats all welcome
I have had experienced of good and bad, not any covered with so much nonsense to fool us into thinking others know what they are talking about 🤣
Spot on repeated as gospel reasons on sites, but the reason can be said, there might be some new people who need to learn ....
Hi yes its a struggle but the forum is about supporting each other best we can. Problem tinnitus can be a lonely experience & the forum definitely helps with that.
I understand what you are saying, my point is that on sites for tinnitus we are getting the same unproven advice, lots of contradictory advice, normally by the same members, surely it would be better to focus on research and using these sites to force action rather than accepting the go away attitude and live with it. I did take the time to show some of the content to my audiologist who agreed much of it is mirroring what they have already said to patients, to me this is completely pointless without any proven basis.
U have to stay positive see these four audiologist got tinnitus and handled like a champyoutu.be/8I4jcv2QN8Y?si=gzW...
This i agree , supporting is crucial
There’s got to be something out there to cure this illness because it’s really getting on my @@@@ any trials out there anything
Yes. I’m using a white noise generator with the Be-Moore app recommended by my Audiologist ( He has Tinnitus & No Ones the Same.
All one Can do is go through the diagnostics.
Eg did it come on through Labrinitus .?
Trauma/anxiety..
There is No Silver Bullet for Tinnitus unfortunately.
All I do is ascertain the triggers
Keep BP_ low, eg alcohol elevates the veins in the inner ear & Bp.
Avoid stress if you can…
Exercise
Diet.
I find it debilitating “
There’s no money for Empirical research = BIG PHARMA _ not interested…..
Every day can be a struggle.
With the generator, you can change the hiss for nature sounds & up and down the frequency to your Cognitively acceptable as can be scenario & then save the setting.!
There’s also different programs that can be loaded onto your app through the Audiologist….
Yoga
Tai chi
Anything that tones it down.!
All you Can do is Manage it.”
When it gets too much for me, I take a diazepam.
Good luck
Daniel 🙏.
Hello BW. I'm sorry you feel this way. I've always found this site very uplifting. I enjoy talking to other people with T and have learned a lot from their experiences. Ultimately it's a support forum. We support each other as best we can to manage a condition to which there are currently no answers. Best wishes 🙂
Thank you for your answer, to be honest I don't find it uplifting at all, I find it to be a bit of I have tinnitus so I know what I am talking about, constant advice with absolutely no substance, nobody needs to hear the same nonsense as told by audiologists.
Thank you for your reply, I am definitely not angry with your good self, just with the lack of research in the UK.
I understand . I have CFS/ME too. Another under funded / under researched condition. It's frustrating to say the least . I removed my last post in case it sounded patronizing. It wasn't meant to be.
Not at all, thank you.
I agree as. I said many audiologist youtube keep so called updating video.....but u know well....
While u complained that, they would tell u please be respectful, this methods have individual variation its just not working on u
I never blame your post is not uplifting thats normal for us suffering to say some truth, some toxic positivity isnt gonna help,Like i asked before why audiologist advocate sound therapy while psychologist dont, i was blamed
Because you dared to question.
Psychologists focus on cbt sound therapy is not their professional remit . I studied post graduate cbt but hated the approach so it's not for me but others might like it, particularly if they experience anxiety and depression. Sound therapy works wonders for me and enables me to sleep. Audiologists are qualified to promote sound therapy and adjust hearing aids. Psychologists are not.
From treblen health quoted their service
Frequently Asked Questions
"I was told that tinnitus is permanent and I just have to “learn to live with it.” Can your services actually lower tinnitus?"
Many doctors do not know that there are treatments for tinnitus. It’s true, there is no surgery or medication to cure tinnitus, but research has shown that about 80% of patients can reduce the perception of tinnitus using tinnitus retraining techniques. Oftentimes, the volume gets softer too.
No methods are proven per se as research looks at rejecting ideas,rather than proving them but there are lots of conditions that are associated or correlated with tinnitus. You could ask your ENT/audiology/ neurologist/ other specualist to rule in/out possible causes and consider treatments
Eg deaf - wear hearing aids with masking sounds
Fatty blood vessels - eat a healthy diet and exercise
Tumour- seek treatment as necessary
My point is that audiologists do not have any idea of cause yet this site is full of people giving unproven advice with some being completely contradictory.
On the other hand I only joined this site recently…..having belonged to other HU sites for many years. If you look to the right of the page on all the HU sites it states very clearly the content here does not replace any clinical advice you personally receive from your own doctors.
What is written here is personal experience of a health condition…..with sometimes a little tip that may help somebody else. Medical information given is not advice…it’s just each individual’s personal experience of all the experiences they have suffered.
I’m afraid It appears you have misunderstood the point of this site…I have found it informative & as on other HU sites it sometimes makes me smile at people’s fortitude…..I’m sorry you don’t see it that way.
Okay, first advice given is not to focus on the tinnitus, some spend lots of time on here giving unproven advice which is a complete contradiction of that advice, because you have experienced tinnitus don't make any one a expert, after all everyone's tinnitus is different apparently. More research is needed rather than recycled opinions.
You seem to have misunderstood again.
Giving an opinion or telling of an experience can often alleviate stress….which you must admit could help…& if anything written helps even one person…….surely that is a positive?
Thank you, Firstly there is absolutely no solid evidence that stress has any effect on tinnitus, I cannot understand why in the UK we are happy to accept being fobbed off with the no cure attitude. There is a reason why people suffer from this, but as far as anyone gets is a hearing test and if lucky a MRI scan, after that you are on your own. I read a post on this site last week which was like listening to my audiologist, who is proud to have a degree in this field, the whole post was that there is no cure but it may be caused by stress, anxiety, the primitive part of the brain from living in caves, the list is long, audiologist advice is don't look at these sites as they exasperate focus on tinnitus and contains a lot of unhelpful advice. So without research and effort to find a cause, we just accept that nothing can be done. Everyone is different, so it is not that I am misunderstanding, I am baffled by expert advice and content on this site, as they are very conflicting.
Let’s face it if we are stressed /worried about anything it must affect our attitude to that subject…. I have lived in a few countries & tbh the clinical advice from professionals in the field of Tinnitus seems to be pretty much the same worldwide….so it’s not just we Brits who get no amazing revelations on treatments……I mean treatments that work of course !
Of course it’s baffling ..because for now we are privy to the same information as the medics…,and sadly it doesn’t help very much.
On this site we all struggle along as best we can….fervently hoping our own disease will go away…& passing on information we think may help others. We are experts on our own Tinnitus…not other people’s’ so where there might be a similarity …anything is worth a mention.
But as the medical profession has no better answers…a site like this is very comforting to a lot of people…..I’m sorry you don’t see that.
Thank you, I do appreciate your time and replies, I understand it can be comforting to many members and that really is for the good, the reason I am wary of this site stems from my first post, I was practically suicidal and asked if there is a cure, on that occasion I was immediately told that there is no cure, no dragons blood or magic pill, and was basically lectured on how this person had tinnitus for sixty years and how you have to put up with it, at the time I showed this to the audiologists who advice was to stay off this site and any others. To be honest the admin on here was very good and understanding. I have seen that Spain are researching actively, so fingers crossed as you never know.
I think with sites like this..it’s best to read the members whose replies you understand & respect & ignore the rest.
Sites such as this do tend to attract the drama Queens/Kings who have whatever the ailment far worse than anyone else….in their opinion….with those I think most tend to smile & pass on.
But on the whole I think most people do find it comforting to realise whatever the ailment…other people have it too.
I agree with you on that 👍
Cant agree more mate
Agree with AgedCrone.... After being diagnosed I was aware there was no cure but finding this site has lifted me as you can talk to people who really understand and we share experiences and ideas. Take care
I agree with Linley. It's helpful to know there are others in a similar situation and that we can share advice and experience. When I first joined the forum, the positive posts I read reassured me that there is a way to live with this condition. I hope any newcomers to the forum will also find the same positive attitude.
Respectfully submitted,
Keoni
Thank you Keoni, My point is that we as sufferers are programmed to live with it rather than believe there is a reason and possibly a cure, that is wrong. I accept completely we are all different and acceptance is probably easier for some than others.
I would like to comment on some of your points beaverwood. event though tinnitus is not fully understood there are some clear reasons for the onset of tinnitus. Hearing loss, tumour, sound exposure, stress etc. These are based on the people that have tinnitus and what happened to them.
My case, I had an ear infection, this caused hearing loss in my right ear and left me with tinnitus. It will never be proven that this was my cause but the fact that others have hearing loss and then tinnitus shows there is a link, right? I also know that when I am stressed due to sleep, work or flu for example my tinnitus gets louder. This is common across people I speak to. This may not be proven but the majority if not all people will find that stress has a negative impact on their tinnitus.
You say there is repeating advice on here, that's going to be the case on a forum that has new people appear. This is not a progressive research site on tinnitus, this is a forum to help people that are going through tinnitus so this will inevitably lead to repeating of management techniques and help offered by people that have been through this and also some people who are just trying to help by being an ear to listen.
The advice to stay away from forums may be true, especially the sites that are full of horror stories of people struggling with tinnitus. The flip side is that there is a lot of good information there if you can find it from people that have recovered. I have recovered from it and like to give advice.
You say its the same people giving advice, this is more likely because most people who recover don't come back and sit on forums such as these and try to help. I however do, so I will be giving the same advice that worked for me and that I have seen worked for others.
If you are looking for new advice, then forums such as these are not what you are looking for.
The UK is not happy to accept being fobbed off with a no cure attitude! I agree that the first point of contact with a GP generally leads to a 'you have to live with it, nothing you can do' is terrible advice and that is why sites such as these are here to offer some help by people that have been through it.
If you want proof that techniques such as CBT, Sound therapy and stress management work - I am the proof. Management techniques may not work for all, but if works for some then this is a positive.
This site is uplifting for many, if reading advice from experienced tinnitus suffers is not for you then you have to find something that does help you through.
Best of luck
Thank you, at last some positive results, it is very hopeful when someone like yourself takes the time to say they have recovered from tinnitus, unfortunately it is the luck of the draw, with audiologists and mine is very negative and constantly moans of lack of funding and research. I am positive there is a cause and determined to get better, unfortunately there are some on this site and others that have and will shout anyone down who dares to even mention a cure. Again thank you, your post is very uplifting.
I agree, unfortunately I believe its hard to find the right audiologist, CBT therapist, Doctor who knows what to advise and knows how to be compassionate about the subject.
I do wish you the best in dealing with it.
Thank you so much I appreciate that.
Like Darren I would link mine to an ear infection. I developed tinnitus when I got an ear infection 4 years ago. In my case the link was clear, I had a cold and ear infection which resulted in temporary hearing loss in one ear. The tinnitus started with the hearing loss but when my hearing returned the tinnitus remained. For the first few weeks it was so bad I literally felt like I couldn’t live with it if it continued in that way. I couldn’t sleep and the sound was driving me crazy. However, I already meditated on a daily basis and had done a mindfulness based stress reduction course (MBSR) a few years before so I used the the techniques I’d learnt to help me. I also listened to music or background noise when I went to bed. Over time the sound became less obvious, possibly due to habituation, and I became more able to tolerate it. For about the last 3 years it’s been barely noticeable. Generally I only notice it when I’m sitting in a silent room (as I am now). However, it does seem to spike when I have a headache (particularly migraines) and sometimes when I’m stressed but overall it has almost no impact on me now.
Thank you, I am glad you are through the worst it seems and look forward to that day 👍
I see where you are coming from. I'm new to T and when it came it left me agitated and distressed. I have to say that since finding this site, I have not been either to the degree I was just weeks ago. From the comments here (and on articles elsewhere) I'm forming an opinion about a subject I was blissfully almost ignorant about. I'm now of an opinion that you don't acquire (non physical caused) T as you would do with an infection - it breaks through, and for numerous reasons. My job now is to help it back to where it came from and keep it there. (It never entirely goes away and it differs in intensity. Why the intensity varies is a question) I'm hoping that this attitude will benefit me in the longer term, if longer term is what I'm now facing.
Hi Ray, thank you for your post, I think I am someone who can't accept just putting up with it, can I ask, do you suffer from migraines?
I don't Beaverwood. But when I was working lady colleagues did and I know something about them, but only what a non sufferer can.
I suppose I started off in life not being prepared to put up with things, but now I'm 64 it appears that my life has been one big putting-up-with-things exercise so I've been 'broken in' a long time back.
It's seems the only we get the more we seem to suffer 👍
This site is not a medical site and says so upfront. It is a support site and for something like tinnitus that has no verified treatment and often no known cause, that support is going to be subjective. What works for one definitely won’t work for all but just may work for some. It would be nice if far more research was going on and it does seem a lot of the medical experts (audiologists, ENTS) don’t focus on it because so little can be done. I know the cause of mine but on its own that’s not helpful. I think people come here to try to be helpful, perhaps to help them be thankful that they’re not worse off, and possibly to find something else to try while realising it’s probably not going to help. It appears that people do have different triggers (stress, noise, foods etc) but again it’s very individual. I suspect we each have to decide when a site like this makes us feel worse instead of better and maybe take a break.
Hi, I agree with a lot of what you said especially that stress makes it worse. In fact it's the opposite. In my case the only time I got stressed was AFTER I noticed it was really loud, after I got covid last year. Since then it's been up and down. Ironically it's been worse when I've been on these sites as I'm paying attention to it. I do believe there must be a cure. If it's good some days but not others there must be a reason and it's not STRESS
Hi, I do feel like stress and anxiety came after my tinnitus and I was told there is no cure, I understand what some members say about gaining support from the site, but for myself I find some content to be pretty depressed reading and perhaps unhelpful. I am a firm believer that a cure will be found for at least some of us as we probably have different causes, but to believe this is what keeps me going, be it right or wrong. Take care and stay hopeful.
Hi Beaverwood,
I don't know whether or not you've already seen this website, but I thought some of its content might perhaps be of interest to you if you have not yet seen it.
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