NICE Tinnitus Assessment and Management Guideline — Feedback Committee

Discussion in 'Awareness & Fundraising' started by Hazel, May 1, 2019.

    1. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      It looks it is not the NICE Guidance per se but a different article which comments it.
      https://www.bmj.com/content/368/bmj.m976.full
       
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    2. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Too bad it's not open access. Then again if I read it I might just barf up a fur ball. - Tuxedo Cat
       
    3. annV
      Fine

      annV Member Benefactor

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      Full article for your pleasure and review attached.

      David Stockdale as per usual one of the authors. How does he get his dirty hands involved in everything?
       

      Attached Files:

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    4. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      It was a full article when I discovered it yesterday.
       
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    5. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Thank you both. I'll read this soon. TC
       
    6. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Are either of you familiar with or using reference manager software? Thanks, TC
       
    7. Mister Muso
      Creative

      Mister Muso Member

      Location:
      Scotland
      Tinnitus Since:
      2007 / April 2019
      Cause of Tinnitus:
      Loud music
      I saw the NICE guidelines featured in this month's British Medical Journal. It's good to see them out there.
       
    8. TuxedoCat
      No Mood

      TuxedoCat Member Podcast Patron Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      I read this paper and there were no fur balls as a result. There were no surprises either. A guideline committee was involved in producing the NICE Guideline that included 2 lay members, David Stockdale and someone named Linda Parton. I can't seem to find anything about her except an old posting on BTA's Facebook page that's dated Oct 2, 2015 and refers to a BBC broadcast for her story. As you would expect, the episode is no longer available.

      One thing about the guideline is quite glaring - all the recommendations are based on experience and opinion of the Guideline Committee. When it comes to CBT, the recommendation for a stepwise approach (internet administered, group based, then one on one CBT with a psychologist) is based on very low to high quality randomized trial data and original economic analysis. The trial data they refer to is likely the McKenna and Marks studies.

      There are steps in the right direction in this publication. NICE does acknowledge that the UK lacks sufficient psychological services to deliver interventions for people with tinnitus and this is the greatest cost implication. It urges commissioners and services to consider how to best meet the needs of those needing psychological support. But I do wonder if they realize this is not taking the situation far enough. Effective treatments and cures would alleviate the financial strain associated with delivering psychological services. Could that not at least be acknowledged in the publication?? They recognized that additional training may be required for healthcare professionals to raise awareness about tinnitus and its impact, but always stops short of mentioning the need for research for a cure. Is that just not done, is it not polite? Is cure a dirty word or somehow taboo?

      When it comes to recommendations for future research there is no mention of need for longitudinal studies of the natural history of tinnitus that would answer for whom and when tinnitus worsens over time or for research on a path to a cure. But they also have not included the recommendations that appear on their website calling for research on the combination of CBT with sound therapy or on neuromodulation. Perhaps that's a very small victory.

      TC
       
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    9. Mister Muso
      Creative

      Mister Muso Member

      Location:
      Scotland
      Tinnitus Since:
      2007 / April 2019
      Cause of Tinnitus:
      Loud music
      I only skim-read the published article, but it did seem lacking in a few areas as well as an over-reliance on CBT. Like no mention of the potential harm to hearing caused by MRI scans. Or a consideration of prescription medicines and their ototoxicity, including those commonly proscribed as sleeping aids, like amitriptylene, and antihistamines like promethazine, each with potential side effects adversely affecting tinnitus and other clinical or stress factors the patient may already be experiencing, such as breathing difficulties. The only drug I saw mentioned at all was Betahistine which is generally of limited benefit compared to other treatments.

      Also no mention at all of hyperacusis, which perhaps merits a separate study by itself.

      However it does represent several steps in the right direction towards tinnitus being taken more seriously by front-line practitioners, and provides a platform for further discourse and studies by the wider medical community.
       
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    10. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      We actually suggested in our feedback that hyperacusis assessment and treatment should be considered as part of the guideline.

      NICE responded that the guideline only applies to tinnitus and managing sound sensitivities such as hyperacusis were excluded. The committee have made a recommendation to make a management plan for those people with identified needs which would take into account other factors such as sound sensitivity.

      You can read what we suggested and what NICE responded, and what was implemented from our feedback in this post here by @TuxedoCat.
       
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    11. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      @CT84
      I have placed some links below to my posts and hope you find them helpful
      Take care.

      @Mister Muso

      There is only one way to treat hyperacusis that is known to work. I am referring to hyperacusis that has been caused by exposure to loud sounds and the way it is treated in the UK. Before I explain this I would like to mention a few things that I think are relevant.

      When a person develops tinnitus caused by noise trauma to the auditory system: Noise induced tinnitus, hyperacusis is often (but not always) present. NIT can take up to two years to habituate to and this may (but not always) require referral to Audiology to see a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis management. A variety of treatments are available for these conditions, depending on which NHS hospital one attends. This can include: CBT, TRT (or elements of it) Mindfullness, sound therapy, white noise generators, counselling and medication.

      Some people find within the first 6 to 12 months of tinnitus onset, their noise induced tinnitus improves and if hyperacusis is present improves too which eventually leads to habituation. Tinnitus and hyperacusis can be complex and I have covered this at length in various posts some are placed in links below. Some people habituate to tinnitus but find hyperacusis still problematic. This often manifests itself by causing spikes in the tinnitus when a person is exposed to certain sounds that don't necessarily have to be loud. The longer this continues the more difficult the condition becomes to manage. In some instances other problems may result that I wrote about in my post: The complexities of Tinnitus and Hyperacusis. One has to appreciate that tinnitus and hyperacusis can affect a person's mental and emotional wellbeing profoundly. It is here that the real battle of learning to manage and cope with these conditions are fought.

      This is the reason I impress upon people the importance of bringing positivity into their life and not to associate with negative thinking people at tinnitus forums and other social media platforms. I am not talking about people that express their difficulty coping with tinnitus. I am referring to those that denounce all forms of tinnitus treatments as non effective, and have a deliberate vendetta to thwart any signs of positivity whenever it is present. One example of this was a member that recently posted in this forum the success she was having with TRT. Unfortunately, she left abruptly due to the negativity she received from certain members that have a negative mindset. This is also the reason I advise people once they start a tinnitus treatment not to discuss it at tinnitus forums.

      Hyperacusis can be treated with self help and good results are possible, that I have covered this in my post: Hyperacusis, As I see it. When the condition is more problematic the best treatment and one that is known to work. is the wearing of white noise generators. This is a specialised treatment and one needs to be under the care of a Hearing Therapist or Audiologist. Treatment can take up to 2 years. My hyperacusis was completely cured in two years wearing white noise generators up to 10hrs a day. Counselling was also involved. A member of this forum from the UK, told me a short while ago that he was about to start treatment for hyperacusis. His Audiologist told him, that all her patients were cured of hyperacusis. The only ones that didn't do well were those that didn't stay with a her treatment plan. He told me the Audiologist who specialises in hyperacusis, said the brain has only one hearing centre and therefore, only one white noise generator needed to be worn not two. This surprised me as I haven't heard of this before. Treatment usually takes 18 months and regular counselling is provided.

      Michael

      PS: The negative thinkers in this forum will be quick to disagree with what I have written and therefore, I have no interest in long winded arguments and will not respond to their comments.


      https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
      https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
      https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
      https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
      https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
      https://www.tinnitustalk.com/threads/the-habituation-process.20767/
      https://www.tinnitustalk.com/threads/is-positivity-important.23150/
      https://www.tinnitustalk.com/threads/the-complexities-of-tinnitus-and-hyperacusis.25733/






       
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    12. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Ambassador Hall of Fame Advocate

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced
      Bryan Pollard said on a recent Tinnitus Talk Podcast episode:
      • There was a study earlier this year by Martin Pienkowski that was entitled ‘Rationale and Efficacy of Sound Therapies for Tinnitus and Hyperacusis’. In this paper he concluded that there are too few placebo-controlled trials that help to demonstrate the effectiveness of any sound therapy treatment and he highlighted that, especially for hyperacusis, only a handful of studies, mostly case reports, showed true benefit for hyperacusis, broadly speaking.
      • In more specific discussions with clinicians, as well as our own survey data, I have found that for those who have hyperacusis with pain, there is some evidence to indicate that they get much less benefit from either Sound Therapy, broadly, or TRT overall, than those who have loudness hyperacusis.
      • With pain hyperacusis, earlier this year in talk on treatment for pain hyperacusis, the spokesperson said that we treat pain hyperacusis completely independently now from loudness hyperacusis and it requires a much more tailored approach and, also, we typically don’t expect the same outcomes as we do with loudness hyperacusis.
      This is not the case for everyone with hyperacusis.
       
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    13. Mister Muso
      Creative

      Mister Muso Member

      Location:
      Scotland
      Tinnitus Since:
      2007 / April 2019
      Cause of Tinnitus:
      Loud music
      I asked my audiologist about TRT for my hyperacusis. She said I would be ineligible as they only provided white noise generators for people who had hearing loss as well as tinnitus or hyperacusis. I believe I actually had hidden hearing loss at the time which has become more apparent as my hyperacusis has receded.

      My ears are irritated by white noise now so I believe I fall into both categories of loudness hyperacusis and pain hyperacusis. As with everything else, there have been too few positive studies for this to be recommended in any official guidelines.

      In the interim my hyperacusis has got better, and it has responded well to amitriptyline which I've heard other people report also. My general practitioner was aware of this when he prescribed it, but out of the 7 doctors or audiologists I've seen, he was the only one aware of the benefits of amitriptyline on hyperacusis.
       
    14. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      There are different types of hyperacusis but I only deal with hyperacusis that was caused by exposure to loud noise: Noise induced tinnitus, because this is what I am familiar with and this is what you have. Your hyperacusis maybe more acute since it hasn't been treated. With treatment I believe your symptoms will improve. I have been using them for over 20 years. I now use them only when the need arises. Some people have difficulty using white noise generators. One of the main reasons for this is due to oversensitivity of the auditory system hyperacusis. To address this problem one has to slowly introduce the white noise generators instead of putting them on and attempting to wear them continuously for hours. This can cause irritation to the ears.

      Please read the post below in answer to a Tinnitus Talk member in the UK, that has been prescribed white noise generators. As I have said in my previous post, hyperacusis caused by noise induced tinnitus can improve without treatment. It can also improve using self help and in many cases completely cured. It can also be completely cured using white noise generators under the care of a Hearing Therapist or Audiologist that specialises in tinnitus and hyperacusis management. As I indicated, a Tinnitus Talk member I was corresponding with in the UK, was about to start treatment for hyperacusis, and was told by his Audiologist, that all her patients have been cured of hyperacusis following her treatment plan.

      Michael

      Hi @Pink Noise

      For twenty years I have been using white noise generators prescribed by the NHS and fortunately, they have never made my tinnitus louder. Some people have difficulty with WNGs for a variety of reasons and stop wearing them. I understand this but in some cases, this might not be such a good idea until every avenue has been explored to try and find out the cause of the adverse reaction. Sometimes the volume of the WNGs are set too high, or the person has been advised by their Hearing Therapist/Audiologist to wear them straight off for 6 to 8 hours which might cause irritation to the ear and auditory system.

      White noise generators can help treat tinnitus and in my case completely cured hyperacusis. From what you describe, it seems that your Audiologist has advised you to set the volume of the WNGs at what is called the mixing point. This is where the tinnitus and the WNGs can both be heard. I do not agree with this method as it can cause irritation to the auditory system for some people and thus make the tinnitus louder. In addition to this, if you have been instructed to wear the WNGs straight off for 6 hours without building up wearing time, this can also cause irritation and make the tinnitus louder.

      My Hearing Therapist advised that I set the volume of the white noise generators slightly below the tinnitus and then, slowly build-up the wearing time so they cause the least amount of irritation to my ears. Therefore, I advise you to try the following which might be of some help.

      Put the WNGs on in the morning and set the volume slightly below the tinnitus. If this causes irritation set the volume as low as possible. After this has been achieved wear them for just 1 or 2 hours then take them off for the same duration. After 1-2 hours has elapsed put them on again and continue wearing for another 1 or 2 hours. Continue doing this throughout the day. The idea is to slowly build up the wearing time so your ears and auditory system get used to them and hopefully your tinnitus wont become louder. This may take two weeks or more until you can wear them continuously for 6 hours as you have been instructed. I wore my WNGs for 8 to 10 hours without any problems after slowly building up the wearing time.

      Once you are able to wear them continuously for 6 hours or more, try not to keep adjusting the volume of the WNGs. Some people do this when leaving their home and going out on the street. Traffic noise and other environmental sounds can make it difficult to hear WNGs. To compensate some people turn up the volume so they can be heard. Please do not do this as it's the wrong thing to do.

      Once you put the wngs on in the morning set the volume slightly below the tinnitus and leave them alone. Over time the brain will habituate to the WNGs and slowly push the tinnitus into the background making it less noticeable. If you keep adjusting the volume of the white noise generators, it makes it more difficult for the brain to habituate to them. If you have hyperacusis the WNGs will also treat it.
       
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    15. Mister Muso
      Creative

      Mister Muso Member

      Location:
      Scotland
      Tinnitus Since:
      2007 / April 2019
      Cause of Tinnitus:
      Loud music
      @Michael Leigh I know you got your WNGs quite a few years ago. I think you said somewhere else that they are not as easy to get prescribed as they used to be in the UK.

      It sounds like you are saying you know someone in the UK who got them recently through the NHS? I'm wondering if my audiologist is correct to say you could only get them prescribed if your hearing test shows significant hearing loss?

      I live in Scotland, so the policy of the NHS in Scotland may be different to that in England.

      Once this coronavirus business is over, I hope to get another hearing test, to see if there has been any further deterioration in my hearing since my test last summer. I believe there has been, so we'll see if that changes their diagnosis and any treatment they can provide for me.
       
    16. Michael Leigh

      Michael Leigh Member Benefactor Hall of Fame

      Location:
      Brighton, UK
      Tinnitus Since:
      April /1996
      Cause of Tinnitus:
      Noise induced
      HI @Mister Muso

      I didn't receive a pm prompt and seen your post by chance. I am still an out-patient at my NHS hospital ENT and Audiology department. I have been using white noise generators for around 20 years and do not have any hearing loss. These devices are very delicate and for no apparent reason, they can develop a fault. This has happened quite a few times and I've made an appointment at Audiology for fitting and replacements. To buy these privately would cost around £2,500 for the pair. In January I was fitted with two new replacements.

      About 8 years years ago I bought two in-ear white noise generators privately from Puretone dot net: MM10s which are the smallest wngs available. They fit discretely into the ear and operate the same as BTE (Behind The Ear) types. I do not recall saying white noise generators are difficult to get prescribed but I could be mistaken. It is not something a patient should ask for - it is a matter for the Hearing Therapist or Audiologist to decide and whatever treatment plan they propose.

      A while back I corresponded with two members of this forum that live in Scotland. Both have tinnitus and hyperacusis and were having treatment with their Audiologist which involved counselling, and they were prescribed white noise generators. Respectively I say, I don't think your Audiologist is knowledgeable enough in the treatment of Tinnitus and hyperacusis. One of the best ways to treat hyperacusis is using white noise generators as I have described in my previous post. Sometimes counselling is necessary.

      I agree that once the Coronavirus issue is over you can make another appointment at Audiology, or ask for a referral to another hospital which is your right. Your hyperacusis needs to be treated. In the meantime you can try self help by following some of the advice in my post: Hyperacusis As I see it.

      All the best
      Michael
       
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    17. Laurie1961
      No Mood

      Laurie1961 Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      dental work
      1.4 Clinical evidence
      1.4.1 Included studies No relevant randomised controlled trial evidence comparing audiological assessments with no audiological assessment were identified. Consequently, non-randomised comparative studies were also assessed. However, no relevant studies were identified for inclusion.​
      Whaaat? Somebody said no fur balls... well this section read like the sound of fur balls coming out of a cat to me. I couldn't look. Somebody else deal with it.
       
    18. Frédéric

      Frédéric Member Podcast Patron Benefactor Advocate

      Location:
      Marseille, France
      Tinnitus Since:
      11/19/2012
      Cause of Tinnitus:
      acoustic trauma
      Tinnitus management in Ireland: a pilot study of general practitioners.

      Abstract

      BACKGROUND:

      Tinnitus is a phenomenon that affects approximately 15% of the adult population. A minority of patients will experience chronic bothersome tinnitus that has a detrimental effect on their quality of life. Management of such tinnitus is challenging for healthcare practitioners. Primary care services are the first point at which patients seek expert medical advice about their condition and General Practitioners (GPs) must be equipped with the knowledge to appropriately triage and guide patients.

      AIMS:
      To date, there has been little research surrounding tinnitus management in Ireland. The aim of this study is to determine how GPs assess and manage tinnitus patients in Ireland.

      METHODS:
      This is a quantitative study in the form of an online survey. The 15-item questionnaire was made available through SurveyMonkey and was distributed by email to GPs in Cork, Kerry and South Dublin.

      RESULTS:
      The survey obtained 43 responses. Sixty-three percent of GPs do not follow any routine criteria for onward referral. Forty percent feel that tinnitus has sufficient impact on their practice to warrant further training. GPs expressed a need for clearer guidance on tinnitus management and better access to resources such as ENT (ear nose throat), MRI (magnetic resonance imaging) and audiology.

      CONCLUSIONS:
      This study demonstrates there is wide variation in how tinnitus is evaluated and managed by GPs, which represents a gap in clinical care. We recommend further research, implementation of a service model for tinnitus, national clinical guidelines, training pathways for primary care staff and establishment of regional direct-access tinnitus clinics throughout Ireland.

      Source: https://www.ncbi.nlm.nih.gov/pubmed/32266580
       
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