"That Buzzing That Never Goes Away" — Article in The Times

» Click here for a better quality version of the article​

 

If I knew nothing of Tinnitus and read this article, I'd see these 2 sentences in bigger fonts:

1. "You can tune out the sound, the experts say"
2. "They fear if they start hearing it, they'll never be able to not hear it"

...and I'd think it's really not a big deal (from #1) and mostly psychological (from #2).

The mention of severe cases in the second column does mention it's "torture" but merely links it to a psychological response and explains we should simply learn to "stop fighting it". It's all in our heads, clearly. The article draws a parallel with "middle-of-the-night thinking" that many people without T will relate to and think "oh yeah, that is annoying indeed" without having any idea what living with severe T is: it's nothing like middle-of-the-night thinking (I can speak with first hand experience with both).

I didn't see any mention of suicide. This condition leads to a suicide ideation that is second only to Chronic Pain, and higher than Parkinson's, Insomnia and Advanced Cancer (source https://journals.lww.com/thehearing...l_Ideation_Among_Patients_with_Chronic.6.aspx) - I think that's the data they should have brought to their readers' attention, because that is very surprising and speaks volumes. It's also a great (negative) correlator with quality of life.

To be honest, this article was quite a let down for me. I certainly want awareness, but I don't want T painted with such a mild psychological brush. I'm afraid it's doing a disservice to the community of severe sufferers that I'm selfishly interested in.

 

Thank you for writing this. You really hit the nail on its head.

A disservice is what it is.

Why is it so hard to understand that it is the pain of tinnitus and hyperacusis in itself that is the real torture. The psychological response and social consequences are really hard to live with, but all in all it can´t be treated at least within a traditional psychotherapeutic approach. I´m currently in touch with a shrink that's all about: "you haven´t accepted it" and "you are still searching for answers/treatment online".

To me acceptance is irrelevant.
Acceptance doesn´t do it for me.

It´s about survival, pain management and trying to give yourself hope. Hope for a treatment/cure or an alleviation of the pain. And I believe that there is hope, a hope I have built through my own research and following the research pages of this forum.

It´s not about being obsessed or not to have "accepted" my condition. These are survival skills.

I´ve tried to tell her: "what if someone was poking a needle in your shoulder all day long. Would you think acceptance would be on your mind, or pain management and finding and keeping yourself apprised by what could help it be less painful or make it stop?"

I´m not getting through to her. I think!

"Acceptance is key!??!" It´s as stupid as, when I was committed to get help getting off benzo´s, which I was prescribed for years by doctors, being unaware that they eventually was the problem in itself for my severe and constant anxiety. Then when I finally realized it and was desperate for help to get off of it, they ask me:" Are you motivated to quit benzos?" .

As sad as it is, I think it´s in our nature not to understand something:
1) You can´t see!
2) that comes in many different degrees of severity, and who´s to judge on severity, when it can´t be measured?

I have to admit, if I had not fucked up my ears as badly as I have and live with the severity of the pain that I experience every second of the last 4 years (actually tomorrow). I wouldn´t have had a clue about how serious of a condition, it can be, either!

We really are on our own, so we better stick together!

 

I've had calls before from newspapers asking for comments and soundbites. I wasn't really sure so asked some others that I know have been quoted and then decided not to bother.

They just seem to take a load of disparate things and create the narrative, with very little real digging into the story. I think that newspaper columns have so little time devoted to them that we are going to be incredibly lucky to get anything that truly represents tinnitus.

This is another area where I feel that we are the ones that need to take control and put stories out there.

 

Can we write a letter in response to the article from the Tinnitus Hub?

We need for our voice to be heard.

If someone drafts the response am happy to contact them.

 

Twitter Update from Neuromod

The link also contains the author of the article in the comments of the tweet.

 

Acceptance is not an alternative to a cure.
Acceptance is a survival strategy.
Acceptance doesn't give back quality of life, only allows us to carry on.

 

Looking at the image, I thought it said 2008, which would make more sense. But I see it's from 2018. Sigh

 

"You can tune out the sound, the experts say"

Tell these "experts" to keep their arrogant, harmful opinions to themselves. The only people that are experts regarding whether you can tune out severe tinnitus, are those with severe tinnitus. "Experts". More like know-it-all clueless bastards.

 

In this article McKenna and Sedley are both spokespersons for the British Tinnitus Association. They set the narrative and the tone. Most of the other information is coverage of the BTA conference. Whatever little bit the reporter wrote was based on what McKenna and Sedley said and the tone they set. Clearly they are still portraying tinnitus as no big deal. To a certain extent, you are making excuses for this and enabling it to continue by blaming the reporter.

McKenna's study of mindfulness is not generalizable- the screen failure rate in his study was very high (175 of 253 screened were excluded). It's not a placebo controlled trial so strong conclusions cannot be made and his characterization of the outcome as being clinically meaningful is dubious. There were 2 primary outcomes and only 1, the TQ score which is a measure of tinnitus severity, achieved significance at 2 out of 3 timepoints. The CORE-NR outcome, a measure of tinnitus distress, never reached significance. In fact the mean CORE-NR score in the MCBT group after 6 months was 12. A mean score >10 is clinically significant so, on average, these people were still in distress after 6 months. In my opinion, a lot of what was measured in the MCBT group may be placebo effects. If you read the online, supplemental materials you will see that the MCBT group read poetry and were also shown a video of others who had done MCBT!!

And, while I'm unloading on McKenna's study, treatment satisfaction was assessed by asking about usefulness and relevance. It was not assessed by asking "How satisfied are you with this therapy as the treatment for tinnitus?"

I have also seen on this forum and Health Unlocked that McKenna tells patients he has tinnitus. Whether he does or not is immaterial, but think of what you experienced at the EXPO when those with tinnitus found comfort talking with someone else with tinnitus who understood their struggles.

TC

 

You can't know that, reporters often add their own point of view and commentary in the articles they publish.

 

"You can tune out the sound, the experts tell"

Look, I may have over reacted but I'll tell you why. Over the weekend I sat and read a rather technical paper by Dr. Sedley who is proposing a model of how tinnitus develops in the brain. Its been a few (understatement) years since I took neurology in grad school, but I found the work fascinating and was comforted by the fact that someone is working at that level . I also watched a YouTube video of Dr.Sedley giving a talk to a group of people with tinnitus at their community center. They did a Q&A during which time Dr. Sedley talked with them, gave them a chance to speak, some of them must have been research subjects for him, some said they'd had tinnitus for 30 years. Clearly it was an group well experienced with tinnitus. One of them said to Dr. Sedley- I wish you were 90 and had cracked this. So there he was with a group who are habituated, are participating in his research, answering his questions all very politely and yet they would still like to be rid of this horrible thing.

Then to come here this morning and read that article saying the experts, McKenna and Sedley, tell you can tune out the sound and Sedley saying that people go for huge period of time without noticing it, well it really, really and truly upset me. Couldn't Sedley have said- despite the fact that some can go for long periods of time without noticing it, they'd like it to be gone because it adversely affects their quality of life?

And, I apologize, but I'm sticking to my opinion of the MBCT study. I'm qualified to have that opinion. News about that study has made its way over here to the US, but I get the sense that no one takes it seriously, thankfully.

I'm excited to see a student get a scholarship or grant from the money that was raised by all the generous people on Tinnitus Talk and in the tinnitus community. I don't share the opinion that it's an insignificant amount, for many grad students it's one of the best periods of life, all your possessions fit in the trunk (boot) of your car and all that's asked of you is to study what you enjoy studying. 5K will make a difference. BTA do a good job reaching out to the tinnitus community. David Stockdale goes the extra mile, you won't find the exec director of the ATA interacting with people on a support forum on a Sunday evening.
But, wow those sucker punches really hurt.

TC

 

Funny you don't see people telling people in chronic pain to "tune out the pain". These are just TOTAL crackpots that don't know how to fix the problem and they have made themselves a niche in the community.

 

Another day, another annoying article about T, yeah most people can tune it out if their T is not that bad...for others it can be really hard.

 

Actually you do. That is exactly what the Mayo Clinic does. And guess what....it's more effective than opiates.

 

Well that's wrong. If someone can live their life on painkillers and function normally then they should be allowed to have them if they want them. God invented all the plants as tools to help us and I'm so sick of know it all control freaks vilifying people for wanting them, especially when they are the same ones that prescribe enhanced and adulterated versions of these natural substances.

 

Does anybody have a better resolution of the article?

 

John - ‘crackpots’ is too polite,
these people are ‘arse’oles;’
They are dealing with sufferers of perhaps the worst condition known to man, and they happily dispense total Bollox.
I despise them all for both their total ignorance, and their arrogance !!!!!

 

No... you are missing the point... Mindfullness can outperform any pill. Especially in those motivated.

 

ok, that may be true. and I guess there are many cases where the person is simply addicted and can live much better without the pain killers. that being said pain levels are hard to verify in all cases and I know for a fact that some people that really need them are being denied because there's a giant stigma against pain killers right now. I suffered an explosive injury to my hand and had painkillers after they put my hand back together and they made me sick and I stopped taking them and the pain actually wasn't bad at all.

 

I'm glad they helped! But they don't help "more" than other interventions. Nor are they better for certain types of pain. Any opiate pain reduction beyond what an NSAID or Tylenol can achieve is placebo. And we owe it to people to give them really relief, not opiates.

 

Have you ever tried opiates?

 

Spot on Manny.
These people are ignorant opinionated lying bastards.

 

Here you go! Word for word. Identical to the newspaper scan.

Tinnitus, the buzzing that never goes away
One in ten people has tinnitus. It’s incurable, but you can tune out the sound, the experts say
Tinnitus is often one-sided, more commonly in the left ear, for unknown reasons

After a six-hour operation to remove a large benign brain tumour last week, the former BBC correspondent Rosie Millard cited “a bit of tinnitus on one side” as the symptom that led to its discovery. Tinnitus, the perception of noises in the head or ear that have no external source, affects six million people in the UK. However, says Dr Laurence McKenna, a consultant clinical psychologist of the Royal National Throat, Nose and Ear Hospital, UCLH, the chance of a benign brain tumour being the cause — there’s no known association to malign tumours — is about 1 in 10,000. “It really is very, very rare.”


Rosie Millard after her six-hour operation

Tinnitus, however, is common. “It is one of the most prevalent physical symptoms to affect humanity,” McKenna says. The sensation may be constant, intermittent, vary in volume and present as a ringing, buzzing, hissing, whistling or other noise. It’s often one-sided, more commonly in the left ear, for unknown reasons. It can be prompted by anything that causes a change within the auditory pathway — for instance, damage to the tiny hair cells in the cochlea (normally, sound vibrations cause these hairs to move, creating the nerve signals the brain understands as sound). Noise trauma or continuing noise exposure are often factors and usually tinnitus is a consequence of hearing loss. Frequently, it’s hearing loss in the high frequency range. The brain tries to compensate for this loss by generating the tinnitus.

“It can also be brought on by a really bad cold or flu that goes to your ears, wear and tear, another infection,” McKenna says. It’s more common as we age, although his colleagues in paediatrics see children as young as five with tinnitus.

Dr William Sedley, of Newcastle University’s Institute of Neuroscience and a spokesman for the British Tinnitus Association (BTA), says: “There are so many young people with a little bit of noise-induced hearing loss from clubs and bars or listening to their iPhones too loud. That’s enough to do it.” Tinnitus can also be triggered by stress.

Sufferers of a very rare form of dementia experience a slightly higher rate of tinnitus than the general population, but Sedley says: “It’s such a small niche association. For someone who’s got tinnitus, their chance of developing dementia isn’t significantly higher than anyone else’s. For most people it’s a benign condition — it doesn’t represent anything more sinister.” There is, however, no cure. “A lot of researchers are working on trying to take the sound away, but we’re a way off from that still.”

Indeed, for the vast majority effective treatment consists of reassurance, knowing that eventually your brain will tune out your tinnitus. “Initially it’s new, potentially threatening,” Sedley says. “After a while, when it’s listened to it for ages and nothing’s come of it, the brain gets bored and assigns it to the background. People realise they’ve gone huge, long periods of time without noticing it.”

For most of those with tinnitus the advice is to cover the basics: get your hearing checked, ensure there isn’t wax obstructing your ears and try a hearing aid. “A hearing aid restores some of the lost hearing,” Sedley says, “and that does help reduce the tinnitus for a lot of people.” Other factors such as anxiety, insomnia and depression should be treated because they all make tinnitus much harder to cope with.

Those who aren’t agitated by tinnitus often mask it by avoiding quiet environments and — when they need quiet, at work or bedtime — by listening to relaxing music, white noise or soothing sounds. Sedley says: “Because tinnitus is caused by hearing loss — the loss of your brain being stimulated by sound — the more sound you add in, the more it suppresses the tinnitus and gives you something else to focus on. You can get sound pillows with a built-in speaker. They help in the immediate sense, and gaining that sense of control can be an important psychological benefit.”

The experience of tinnitus is a fairly intricate weave between physical and psychological processes, McKenna says, and for one in ten of the six million sufferers the condition is torture. That’s 1 per cent of the population, he says, “an awful lot of people. They fear if they start hearing it, they’ll never be able to not hear it, and as a consequence might lose their sanity. They constantly distract themselves, obscure it using external noises. That’s physically and emotionally exhausting, and maintains the anxiety. Being on the run from tinnitus doesn’t help. It gets in the way of the natural process of habituation.”

There’s no magic pill, but scientific evidence shows psychological intervention such as cognitive behavioural therapy (CBT) is highly effective. McKenna says: “When the noise is going to stop me concentrating, interfere with my relationship with my children, stop me sleeping, it has a strong emotional significance. CBT addresses that high level of arousal and emotional significance. It tests those assumptions.” In reducing fears, it helps to undo sufferers’ perpetual “middle-of-the-night thinking” and their experience of tinnitus becomes less distressing.

Mindfulness-based cognitive therapy (MCBT) is the latest development within CBT. “It uses meditation exercises as a scaffolding for delivering some of these psychological ideas,” McKenna says. “It encourages people to stop fighting it quite so much.”

His clinic offers a programme of MCBT, which follows his two-year trial with Dr Elizabeth Marks of UCLH and the University of Bath to investigate its effectiveness compared with relaxation exercises (eg progressive muscle relaxation, visualisation), an established approach to managing tinnitus. “Both treatments produced statistically and clinically significant changes in people’s experiences,” he says, “but the mindfulness produced significantly more benefit than the relaxation exercises.”

Vagus nerve stimulation (already used for epilepsy) has a moderate effect on reducing the volume of tinnitus. It is likely to be available at some private clinics next year and may interest those who aren’t squeamish and have more than £15,000 to spare, Sedley says. “An implant is placed in your neck, a little electrode, around the vagus nerve [which has a calming role in our flight-or-fight system], which is connected to a pacemaker-style battery under the skin by your collarbone. It plays sounds in your ear that are a bit like the tinnitus for a certain amount of time every day, while stimulating the vagus nerve, and that relaxes everything. It can break up connections in the brain that cause the tinnitus.”

Meanwhile, a promising and less expensive treatment is on the horizon, which Professor Berthold Langguth, the director of the Tinnitus Centre in Regensburg, Germany, spoke about last week at the BTA’s annual conference in Birmingham. We hear, he says, when sound waves enter the inner ear as vibrations and are transformed into electrical signals, transported along the auditory nerve to the brain, where they are further processed and understood as sound.

However, “the nerves which come from the face and neck area connect with the nerves that come from the ear and also influence the processing of the signals that come from the ear. We have this connection so that when we hear a sound we can detect exactly where it’s coming from.” Therefore, “the brain also needs information on the position of the face and the head in relation to the body”.

The new treatment takes advantage of this connection. Patients listen to sounds through earphones for an hour daily, while their tongue tip is gently electrically stimulated by a small toothbrush-like device (producing a light tingling sensation). “This signal which goes to the tongue connects in the brain and bypasses the damaged cochlea,” Langguth says. “Normally because of the hearing loss the sound does not get completely to the central nervous system, but when presented at the same time as the electrical signal, the nerve fibres from the tongue connect with the nerve fibres from the ear to bring the information to the brain. By using this approach we were able to reduce the amount of tinnitus suffering in patients.”

After 12 weeks of treatment an impressive 80 per cent of 500 patients experienced a lasting improvement. “To be honest the results are a bit better than expected,” Langguth says. Indeed, they’re so promising that the device may be approved in Europe for treatment next year, although he stresses that they offer an improvement, not a cure.

Dr Raj Shekhawat, a clinical audiologist from New Zealand, of the Tinnitus Research Initiative, also spoke at the BTA conference about his promising clinical research into “brain stimulation”. He says: “In people with tinnitus there is some form of hearing damage in the hair cells in the inner ear. As a result of that damage the cells create an error signal perceived by the brain as tinnitus. There’s no sound, but the brain perceives it as a sound. And the moment you hear that sound — ‘Hang on, there’s no sound source, the alarm is OK, the TV’s fine, but I’m still hearing the ringing’ — the emotional area is alerted: ‘Am I going crazy, have I got a tumour, am I going to lose my hearing? Nobody else is hearing it.’ ”

Brain stimulation alone can result in temporary suppression of tinnitus in some patients, Shekhawat says, “which is fabulous, a ray of hope”. This involves delivering a mild electric current to the auditory cortex and the prefrontal cortex using small electrodes placed on the head. “The auditory area is involved in perception of the sounds and processing the features of sound, and the pre-frontal cortex is the emotional centre,” he explains. “This area in the brain is constantly firing, firing, firing, thinking there’s some sound, and there’s emotional distress to it. We are trying to calm it down a little bit.”

Shekhawat is trying to extend the effects of the treatment. “Our latest study shows stimulating the brain for six sessions every two or three days is more effective than one session or back-to-back sessions.” Shekhawat says that this treatment is exploratory, a research tool, not a clinical tool. “But,” he says, “the field of tinnitus is such that we must come up with crazy, innovative ideas.”

 

I have! I was put on them numerous times, I quite enjoyed the feeling. I also helped lead several state wide coalitions against opioid abuse as a public health crisis before I moved into cancer. It helped, certainly! But the quick fix isn't always the best fix.

 

Why are people so void of the fact that mindfulness can actually cause neural plasticity to undue chronic pain and tinnitus?!! The research is there... is it an ego thing? Self esteem?

 

Desperation? The same way people never do the exercises their physio therapist gives them

 

Research can be wrong. You cannot blindly accept publications by all publishers. To do so is to naively ignore the very real existence of scientific bias.

 

'you can tune out the sound' so not to worry, lets not care about funding or pushing for a cure.

If you can tune out a sound you can just tune it in as well. These crazy people making life difficult for themselves. tut.

 

This is false. Precisely because the mechanisms by which the brain uses to tune out tinnitus is the mechanism that research is trying to decipher. As long as there is a market for it, people will pay. As long as people are willing to pay, money for research will go there.