Misophonia on BBC

Thought you may be interested in a feature the BBC is doing today on misophonia.

Story here, also heavily featured on the various BBC home pages
https://www.bbc.co.uk/news/stories-46193709

You can listen to a piece on BBC World Service (link on the page above), and there’s going to be a discussion about misophonia on Jeremy Vine’s show on BBC Radio 2 about 1pm featuring Dr William Sedley.

 

This looks really interesting - it's clearly a terrible condition to suffer from. Would be interested to know what medical advice she is getting as some of the things she is doing such as using earplugs all the time and listening to loud music through headphones are normally thought of as likely to make hearing sensitivity issues worse.

Btw @David please can you get back soon (as promised) with the data which supports the claim on the BTA website that "Most people find that it (tinnitus) doesn’t affect them in any way" I think it's really important to see how representative the evidence is for this very sweeping claim. Many thanks.

 

We're on it. Please be assured that your point is being seriously considered. As soon as we've made a decision on an amendment or that the evidence supports the statement I'll report it back here (along with the references). We have quite a lengthy process for amendments to some of our pages to ensure that we adhere to the information standard mark.

 

I’ve always been scared of loud bangs and fireworks from a young age so maybe I do have it mildly.

 

Thanks for your reply on this. I'm genuinely interested to see how robust the evidence is for this statement. - "Most people find that it (tinnitus) doesn’t affect them in any way".

My own firm belief is that even for the majority of sufferers - those who have habituated and wouldn't now regard their tinnitus as "severe" - it still has a significant affect on their lives. I'll be delighted to see that reflected in an amendment on the BTA website, but of course if there is significant data to the contrary it will be interesting to study it to see how robust and representative it is.

 

Hi David - thanks for coming on here! I'm grateful to the BTA for their great phone line which helped me in the first month of tinnitus.

David C said "David please can you get back soon (as promised) with the data which supports the claim on the BTA website that "Most people find that it (tinnitus) doesn’t affect them in any way".

Now there is some very useful info in the BTA leaflets. But I have a very similar concern to David C - I have very often wondered about a two statements made in another of the leaflets, Drugs and Tinnitus. https://www.tinnitus.org.uk/drugs

The first statement is:

1) "Many people with tinnitus worry that certain drugs or medicines may have caused their tinnitus. A browse through a medical textbook or a search on the internet would seem to reinforce that view as there are numerous reports of tinnitus being associated with medication. In fact, when these claims are subjected to proper scientific scrutiny the number of drugs that genuinely cause tinnitus is extremely small."

And the second is:

2) "There is another way that drugs may get accused of causing tinnitus: drugs are administered to treat medical conditions or illnesses. Having the illness that requires treatment is a stressful event. Stress is a well recognised trigger for tinnitus and consequently in many cases it is the stress of the illness rather than the drug used to treat the illness that triggers the tinnitus."

There is quite a lot of evidence to challenge the first statement. It is increasingly acknowledged that drug side effects reported in clinical trials may often be underreported - see -
https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1002127
https://www.ncbi.nlm.nih.gov/pubmed/16689555
http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0080-62342014000400739

I would be interested to know what evidence there is for the implication that textbooks denoting associations with tinnitus and various drugs are wrong, and for the statement that the no. of drugs that genuinely cause tinnitus is very small.

Now, the author is quite correct to imply that just because tinnitus starts following use of a certain drug it cannot be concluded with complete certainty that the drug caused the tinnitus, but when many patient report the onset of tinnitus after starting new drugs and the same drug names come up repeatedly, like Wellbutrin for example, there may be cause for concern. The science of pharmacovigilance is in its infancy but we can't dismiss all reports that occur outwith clinical trials as likely coincidence- see the above reviews.

With regard to the second statement - "in many cases it is the stress of the illness rather than the drug used to treat the illness that triggers the tinnitus" - that statement appears to be rather wildly speculative. It is just as speculative, if not more so, that a patient saying that a drug is likely to have caused their tinnitus when it started soon after onset. Is there any hard evidence to back up this second statement?

Thanks!

 

Yes - you make very interesting points. I had a look through the online leaflet and although it clearly has good intentions in reassuring tinnitus sufferers who have to take medication, many of its claims do appear dubious. Your point about the sentence "in many cases it is the stress of the illness rather than the drug used to treat the illness that triggers the tinnitus" being "wildly speculative" is absolutely right - would love to see what actual evidence they have for that claim.

And when they ask the question:

"Why is it that there are so many reports of drugs causing tinnitus but so few scientifically confirmed cases".

They completely ignore the real reason - which is that it is really difficult to prove cause and effect in these types of cases.

 

I agree about the possible good intentions - older consultants in particular often still have a paternalistic approach that prioritising telling the patient what they think it is best for them to hear as a priority over a full and frank opinion. Doctors may be concerned tinnitus patients will be scared to take any medicine if they attribute the onset of their tinnitus to a drug. But also in medicine some might argue there's a cultural reluctance to attribute adverse events to medical treatments, partly for medico legal reasons. Nevertheless there is this difficulty with proof of cause and effect with drug adverse reactions.

In the UK the drug and device regulator is called the MHRA - they have something called the yellow card scheme whereby both clinicians and patients can report drug and device adverse reactions. Interestingly they only started letting patients report to this system in the wake of a 2003 BBC Panorama investigation into the adverse effects of anti-depressants.

 

So based on your feedback we've revised the page. The page is here; https://www.tinnitus.org.uk/all-about-tinnitus and the version number has been updated to reflect the change.

 

Tinnitus, hyperacusis, Misophonia and Phonophobia


Tinnitus is a common condition that many people are able to cope with without it causing too much difficulty in their life. Therefore, it is often treated as a minor inconvenience because it rarely requires being under the care of an ENT clinic. Please ask members of your family, friends or co-workers whether they have experienced it or have the condition and you’ll probably be told: “I get that but just ignore it”. “I only hear mine when it’s quiet but it’s nothing”. “It plays a tune and then it’s gone”. These are just a few examples of what you are likely to hear by those that are not aware or have any inclination of the effects tinnitus can have on a person when it is loud and intrusive. If this intensity is sustained for long periods it can become very debilitating. Fortunately, with time and in some cases with treatment, many people are able to habituate and go on to lead a fulfilling life doing all the things that they want to.

With most things there are exceptions and tinnitus is no different. If a person also has hyperacusis, which isn’t uncommon with loud noise exposure, it can complicate matters. If the hyperacusis doesn’t improve by itself or is left untreated further problems may result. This can manifest itself in a variety of ways that I touched on in my post: Hyperacusis, as I see it.

Some people regard earplugs and earmuffs a necessary requirement to protect themselves from any potential loud noise and will even use them to suppress normal everyday sounds. They will go further and choose not to leave their home unless it’s absolutely necessary. This is done because of their hypersensitivity to sound and believe, their condition it will be made worse by environmental sounds that will cause spikes in the tinnitus. Spikes can be distressing and typically last a few hours but are known to last days. However, if one isn’t careful the problem can be made worse and this is well documented in the medical field, as a lowering of the loudness threshold of the auditory system often results with the overuse of hearing protection making it more sensitive to sound.

If this is practice is continued, one not only has tinnitus and hyperacusis to deal with and the emotional stress that comes with them. They also risk developing other psychological problems that are associated with intolerance to sound. The hypersensitivity to everyday sounds caused by hyperacusis and the overuse of hearing protection instils negative thinking and can lead to Phonophobia - an overwhelming fear of sound. Often an affected person will spend a lot time monitoring sound levels in their immediate environment and even use sound level meters as their concerns for intolerance to sound grows. They will use earplugs or earmuffs sometimes both to protect themselves even from low level sounds they believe will cause harm to their auditory system. Unfortunately, this can become an obsession and a vicious cycle of overprotection of hyperacusis and phonophobia develops and can become a big problem if one isn’t careful.

If this situation isn’t addressed and some form of help is not sought, then things can become more problematic. Some people with tinnitus, hyperacusis and phonophobia can develop a condition called: Misophonia. It is having an extreme emotional reaction to typically occurring sounds. This does not mean hating sounds in general. It is having a dislike for specific sounds known as “trigger” sounds. It is also known as: selective sound sensitivity syndrome. Misophonia does not mean one is sensitive to how loud the sound is or its volume as with hyperacusis. Neither is it having a fear of the sound, which is phonophobia.

Some people that are highly sensitive may be irritated or get very upset to be around continual intrusive sounds. Their level of tolerance to deal with these obnoxious situations is not as high as with other people. For instance, a highly sensitive person might hear a car drive by and isn’t bothered by it. However, if they know they are going to be hearing that sound all day long and it’s going to be intrusive in their life then they start becoming very upset. This is not misophonia. By contrast, a person that is highly sensitive can also have misophonia. Meaning they can be sensitive to certain sounds but they are not misophonic sounds (trigger sounds). Misophonia is not adversely reacting to fingernails being dragged on a chalkboard, a baby crying, a knife being scored along a bottle or the sound of a disc grinder. These are classed as normal sounds that one might not like and find them bothersome.

Misophonia is an immediate reaction to a “trigger sound” that promotes an involuntary emotional response. An affected person can be overcome with rage, anger and even hate towards a sound or someone making a sound they are acutely intolerant to. Not only do they hear it but feel the distress the trigger sound is causing them. For example, the sound of someone eating an apple, the popping of chewing gum or the slurping of a drink or soup, can affect someone with this condition quite severely. They will immediately want to get away and run for cover or feel the need to confront the offensive source. Often this is just a feeling and actual physical intervention is not usually carried out.

I have only touched the surface of phonophobia and misophonia. These are separate conditions that can affect a person that does not have tinnitus or hyperacusis.

Tinnitus and hyperacusis can be complex and each person will experience them differently. A lot depends on the make up of a person. Whether they are positive or negative thinking can affect the way they look at life and the goals they want to reach. If a person has had one or both of these conditions for a while, typically over a year and have not habituated or noticed some improvement, or feel their symptoms are getting worse. I advise them to try and seek professional help with a Hearing Therapist or Audiologist that specialises in the treatment and management of tinnitus and hyperacusis. Counselling is usually helpful and medication maybe suggested too. This can help prevent conditions like phonophobia and misophonia taking hold.

Michael

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

 

Thanks for your reply on this. I am pleased that under pressure from me to produce robust evidence for the statement on the BTA website that "Most people find that it (tinnitus) doesn’t affect them in any way" the BTA has decided to withdraw the statement completely.

Let's be clear that this claim by the tinnitus establishment in the UK has had a hugely negative impact on attempts to gain more research funding for tinnitus - after all why would governments or large organisations be interested in funding research for a condition which - according to so-called experts - doesn't affect the great majority of people who have it in the slightest degree?

I'm also glad that others on Tinnitus Talk are now following my example to challenge some of the claims by the BTA's medical board. Only by demanding to see the evidence behind claims will we start to destroy some of the falsehoods about tinnitus which have led to lack of funding for the condition and lack of funding for research for a cure.

 

I think one of the issues adding to confusion here is that there are forms of tinnitus where your ears will ring a little for about 15 seconds once in a blue moon. I experienced this since childhood before I got hearing damage and chronic tinnitus. It is the difference between a paper cut and having an amputation. We need to stop lumping them both in the same category. The short bouts of tinnitus that happen rarely are not and should not be considered as an issue. It is the chronic sufferers with tertiary symptoms that include things like hyperacusis, insomnia, visual snow and eye floaters etc. that should be considered in all of these discussions.

DEFINITELY stop saying that it doesn't bother people and that it will fade away. Just stop it. What if the American Cancer Association lumped skin tags and moles in with brain tumors and made statements like, "most cancers are benign and don't really bother people"?

 

Yes - challenged by me to produce the evidence that tinnitus has no affect on the majority of people with it, the BTA have had to withdraw the claim. What we need to emphasise is that tinnitus does have a big impact on the lives of so many. While at different extremes there will be some it doesn't have any impact on and some it has a very severe impact on, in the middle there are millions for whom tinnitus has a negative life impact but who when they asked their doctor for help in the past they have been told they just have to live with it.

 

THISSS, whenever I bring my tinnitus up around my family, my brother in law says shit like "ooh, I've had tinnitus before, it's not that bad, you're just making excuses." It has to be the most infuriating thing in the world.

 

Absolutely agree! I feel like occasional ringing needs a different term rather than tinnitus.

 

Yes. I have already I invented the word for it.

"Shitnitus"
or
Phantom auditory perception syndrome (PAPS)

I have shared the term "shitnitus" with an executive from Frequency Therapeutics and got an endorsement.

They are cool dudes for sure.

 

Hi @David - thank you so much for coming on here - would it be possible to answer my question in the above post. Again in the context of gratitude to the BTA for their efforts and phone line.

 

Interested to see if @David is going to respond to @Agrajag364's queries about this and the factual evidence to back up the BTA's dubious claims in this regard.

 

We're looking at it and I'll report back if we amend the page or if not, then with information as to why we didn't. Takes time as with all of these pages we get it written by a medic, edited, then reviewed by other clinicians and also people living with tinnitus.

 

Great!! Thank you so much David. I really appreciate the interactiveness with patients.

To be clear about my second statement, it is, of course, not in dispute that stress is an established instigator of tinnitus. It just seems that if a patient reports tinnitus of new onset soon after starting a new drug, attributing this to the stress of being ill is even more speculative than attributing it to the drug.

 

I am glad that the very poor online page produced by the BTA on drugs and tinnitus is being reviewed - many of its statements seem dubious and patronising. To be clear, the fact that the text is written by a medic doesn't ensure that it is free from lazy thinking and sweeping assumptions.

What we need to campaign for is online tinnitus information which is based on robust evidence.

So if two of the claims in this leaflet are correct: Specifically:

1. "the number of drugs that genuinely cause tinnitus is extremely small."
2. "in many cases it is the stress of the illness rather than the drug used to treat the illness that triggers the tinnitus"

Then the BTA will be able to produce robust evidence to back up these claims. If they can't produce the evidence then these dodgy claims need to go.