How far away are we from a decent Tinnitus tre... - Tinnitus UK

Tinnitus UK

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How far away are we from a decent Tinnitus treatment or even a Cure?? As hasn’t this gone on long enough now!?

MAC0811 profile image
16 Replies

Blimey it’s bloody awful this Tinnitus and Hyperacusis when they’re both at their most chronic?? Surely to God their has to be some sort of real and actual treatment be it a pill, an injection or an invasive procedure that can cut to to the root and properly treat it or even cure it instead of having these pretty useless other things we only have like which deal with the bi-products like depression and anxiety by using talking therapy (CBT), antidepressants and mindfulness etc which sadly doesn’t help with the worst varieties of this debilitating condition?? We’re in the 21st century - we can stick arms back on replace hearts and other organs, the list goes on - but we are still no nearer to closing in on a decent treatment for this?? It really does beggar belief and considering there are so many suffering with it?? But it doesn’t get any publicity though either?? As I hadn’t heard of it until I got the bloody thing, the only thing I’d ever heard was if you listen too much to loud music you could go a bit deaf? No one ever told me that you could end up with a constant noise noise in your head and that will make you feel suicidal practically on a daily basis as it completely wrecks your life and relationships? More surely has to be done to end this living nightmare for many?? Does the government need lobbying perhaps??

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MAC0811
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16 Replies
Happyrosie profile image
Happyrosie

tinnitus is very common . Indeed, experiments have shown that if you put someone in a soundproof room most people will have tinnitus to some degree.

There are many other conditions that have no cure, or at least research is going on but hasn’t got anywhere much. I was reading only today that an alzheimer drug isn’t getting approved because of poor side effects. Endometriosis. Substance abuse. Arthritis. Multiple sclerosis. Autism. Schizophrenia. There are just a few off the top of my head where you can’t pop a pill and all will be well.

You say you hadn’t really heard about tinnitus. Had you heard about arthritis? How painful it is, how debilitating?

LFC65 profile image
LFC65 in reply toHappyrosie

I have Arthritis in Abundance. If I had a choice I would get rid of Tinnitus.

rabbits65 profile image
rabbits65

I do agree with you, It’s a bit ridiculous . HOWEVER did you know that there is a big healer !!! It is actually yourself Time and patience , Being as calm as possible. You will soon realise its not half as bad as it might be just now.

Parrcj profile image
Parrcj in reply torabbits65

I have stayed calm, purchased head bands for sleep issues, tried mindfulness, just about everthing that might help. I have cried at appointments with ENT, and apologised, but no relief. Days are okay just keep busy, nights are deadful. I have come to accept there is no help out there. Just some days are very dark, others not so.

I have HA and sleep with one in my right ear it helps.

Never heard of T until 2 years ago unless you have it you cannot understand the pain and distress.

I watch this group hoping one day you never know !!!!

Thank you all for comments, suggestions its good to chat !!

Cookie24 profile image
Cookie24 in reply toParrcj

Do you sleep with your hearing aid?

Parrcj profile image
Parrcj in reply toCookie24

Yes I do it gets me through to 6am. It in my right ear only i lay my hand over my ear to cover the HA.

Cookie24 profile image
Cookie24 in reply toParrcj

Audiologist told me not to sleep with them and charge them overnight. Tinnitus is in my right ear only. Maybe I should try wearing the right hearing aid...

Parrcj profile image
Parrcj in reply toCookie24

Mine are battery operated Oticon HA

TinnitusUKPat profile image
TinnitusUKPatPartner

Hi MAC0811

Medication trials have been ongoing for decades - all of which have failed at some stage of the research process for various reasons, and the variety of issues which caused those failures maybe illustrates why it's difficult to develop a pharmaceutical treatment which addresses the needs of every person with tinnitus.

As the latest example, the OTO-313 clinical trial, which many people on the forum may be aware of, failed in part as the placebo control yielded better results than the primary medication being tested (drugdiscoverytrends.com/oto....

There's an open discussion in the tinnitus research sphere about whether tinnitus itself or the emotional/psychological effects of it are the primary difficulty which people have - one way of seeing the current state of things is that tinnitus distress is the condition which people may be treated for, as that's what medical systems are able to offer.

Ruud1boy profile image
Ruud1boy in reply toTinnitusUKPat

Good grief. After 40+ yrs of serious research into T, they're still arguing the toss as to whether it's the T or the distress it causes that's the problem?

Here's a thought - treat the tinnitus and then there'll be nothing to be distressed by!! I'm being facetious, I understand it's not that easy.

Ray200 profile image
Ray200

T is prolific in the music industry. An occupational hazard. It goes without saying that there are members therein who would dearly love to rid themselves of it, who have immense riches and are charitable trust minded. Perhaps a Geldof type pusher can come forward therein and organise for them what Band Aid did for others. Now that would propel T to front page status. No doubt about it.

Ruud1boy profile image
Ruud1boy

I've often heard it said that the medical community have been 5yrs away from finding a cure for tinnitus for about 40yrs. The sad fact is that no-one dies of tinnitus, so it's never going to gain equivalence with similarly uncurable conditions that are life threatening.

There were representations to Govt a few years ago, pushing for investment for more research into T and flagging the significant costs to the economy that tinnitus causes - people unable to work, GP consultations etc - but IIRC that was just before Covid hit, so I don't believe those representations gained much traction.

Cookie24 profile image
Cookie24

I agree.

777john profile image
777john

I fully agree that when your tinnitus reaches a high constant level nothing that the experts recommend actually help, the only thing you can do is keep your self active go out for long walks try to keep working and wait until you habituate i think we all have a point where we can cope once the noise level gets beyond that we start to panic and get anxious and stressed and its hard to pull back from that unless or until the tinnitus goes back down thankfully for most people that's what happens unfortunately for a few of us that never happens the only thing we can look forward to is habituation once you reach that point you can get your life back as i have, the noise in your head just becomes the norm as far as a cure goes we haft to hope that some drug out there that cures something ells actually helps tinnitus because tinnitus is a brain disease which means billions of pounds would haft to be put in to it and that is not going to happen but i do believe in time another drug out there will be the key.

LFC65 profile image
LFC65

Excellent explanation of the hopelessness of it all. Only here for my family it makes it just tolerable only just.

Kellythecat-74 profile image
Kellythecat-74

Sorry MAC08II. The problem is , Tinnitus isn't lethal. So its not top of any ones list. Plus there are so many different causes of it. The cure finder would be a billionaire within weeks.

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