Working Together to Find a Cure for Tinnitus

British Tinnitus Association Manifesto Roundtables 2020, kindly hosted by Sir John Hayes MP. 

A discussion by Carly Sygrove, creator of the My Hearing Loss Story blog, and advocate for people with hearing loss and tinnitus. 

Tinnitus affects one in eight people in the UK, yet there is currently no cure.

My own tinnitus story began three and a half years ago when I experienced sudden hearing loss in my left ear. The moment I lost my hearing, I simultaneously gained the unwelcome whooshing and ringing sounds of tinnitus.

Following my hearing loss, I started to write a blog in order to share my experience of living without full sound and with other associated issues, including tinnitus. Through my blog, I have connected with people from all over the world whose lives have been affected by hearing loss and related symptoms. Tinnitus is one of the most common reasons why people contact me to seek support. Living with such an intrusive, yet invisible condition can be extremely difficult, and for some it is debilitating.

Although there are management techniques and devices that can mask the noises of tinnitus, there is nothing that can actually eliminate it. Knowing you have a condition for which there is no cure can be a tremendous mental weight to bear.

Tinnitus Research: How Can We Move Forward to Find a Cure for Tinnitus?

As part of the preparations for Tinnitus Week (3rd-9th February 2020), I was invited by the British Tinnitus Association (BTA) to attend a roundtable event at the House of Commons.

I would be representing people with tinnitus and joining researchers, other people with tinnitus, politicians, public health institutions and research funders, to discuss how we can progress the search for a tinnitus cure.

The Roundtable Event – House of Commons, Thursday 16th January 2020

Tinnitus roundtable

The event consisted of guests at two parallel tables, discussing how to move forward with tinnitus research.

Bringing together participants from a wide spectrum of backgrounds and specialisms encouraged an active and productive discussion. There was a focus on both the technical aspects of developing a cure and the personal opinions of those who are living with the condition.

The Technical Aspects of Finding a Cure

Although the participants in the discussion at our table were from a variety of backgrounds and with different associations with tinnitus, we all agreed that a tinnitus cure means silence.

Listening to the views and priorities of those involved in research, I learnt so much about the technical challenges of finding a cure. There are a number of issues which can impede the progress of research, and there are matters to be considered before progressing studies further. Some of the topics discussed are outlined below:

  • The Importance of Research Into the Subtyping of Tinnitus

There isn’t just one type of tinnitus, in fact, there are many different forms of the condition.

Tinnitus may occur as a consequence of excessive noise exposure or be caused by disorders which affect the brain’s auditory function. Some types are related to the sensory system and others are a result of muscle contractions. There are also subtypes of the condition such as musical and pulsatile tinnitus. More focus needs to be placed on further identification of tinnitus subtypes in order to facilitate more targeted research. 

Co-founder of Tinnitus Rooms support group, Louise Hatch stated, “We need funding and research into subtypes of tinnitus – it needs serious attention in its own right.”

  • Difficulty Measuring the Effects of Tinnitus

Currently, there is no objective way to diagnose or measure the effects of tinnitus.

The effects of tinnitus are subjective and hence hard to measure. For some people, the symptoms of tinnitus may not affect their daily lives and others it can have a huge impact. This doesn’t necessarily mean however, that one patient’s tinnitus is more severe. Some people are able to manage tinnitus more successfully than others.

The severity of tinnitus for patients may also fluctuate due to other factors, such as tiredness, weather changes and mindset. Since the effects of tinnitus are hard to measure, it is difficult to compare results in studies and for this reason, efforts to make advancements towards finding a cure are hindered.

  • The Pursuit of Identifying Biomarkers for Tinnitus

At present, a biomarker for tinnitus has not yet been determined.

A tinnitus biomarker is a characteristic identified in blood or the body that provides a measurable indicator of the presence of the condition.

The presence of a biomarker would be physiological evidence that a patient has tinnitus. If researchers are able to understand the mechanism of tinnitus, then they will be able to measure changes or progression of the condition, and the effectiveness of treatments can be evaluated objectively.

  • The Need for a Tinnitus Database

Dr Charles Large (CEO, Autifony Therapeutics), highlighted the benefits of creating a national tinnitus database with regards to moving forward with research:

“Absence of a UK-wide register of tinnitus means patients are being missed. Research trials would be the first to benefit but more importantly, it would benefit the whole tinnitus community.”

  • The Nature of a Cure

It is not yet known what form a cure will take. Tinnitus researcher, Dr Will Sedley, explained that to find a cure, researchers need to understand every level of interaction between the brain and ear, with regards to the condition. They need to discover a way to teach the brain to distinguish between real sounds and tinnitus and to filter out the latter.

The cure could take the form of a pharmaceutical drug or perhaps a further-developed type of sound-based therapy. We just don’t know yet.

  • More Tinnitus Awareness Amongst the Medical Community

Dr Will Sedley stressed the need to make tinnitus a more attractive area of research to medical students. He stated that “This is one of the most unsolved medical problems”, yet he doesn’t remember tinnitus ever being mentioned in medical school, or any question referring to it in exams.

  • Where to Allocate Funding?

If the government provides more funding to tinnitus research, it will need to be decided where the money will be allocated.

Tinnitus is not an illness in itself but rather is a symptom of a pre-existing condition, such as hearing loss, stress, inner ear disorders or migraine. Since there are various potential causes of tinnitus, do we put money into restricted tinnitus research or use it to fund other groups of research with a focus on illnesses where tinnitus may occur as a consequence?

By funding other areas of research, there is a possibility that a cure for tinnitus could be found as a result of curing an underlying condition.

What People With Tinnitus Want to See

Before the event, I spoke to some of my blog contacts, and for an opinion, much closer to home, I also contacted my dad, whose life has recently become affected by tinnitus.

Detailed below are some of the hopes people who are living with tinnitus have for future research, which largely coincide with the opinions of those at the event, who work within the area of tinnitus support:

  • More Support From GPs

A large number of my contacts expressed a desire for more help from the medical community for people with the condition. Some, including my dad, had experienced discouraging consultations with their doctors and were simply told to “get used to it”. Many people hadn’t been offered advice or support on how to manage tinnitus nor had they been referred to sources of emotional support. Perhaps successful guidance from GPs begins with specific tinnitus-management training?

During the discussion, Megan Gill (Tinnitus Hub support forum representative) emphasised how “Patients want to be heard and have a voice in research.” She spoke about the desire patients have to be listened to, and to be part of the journey of rehabilitation and eventually a cure.

  • Tinnitus Awareness and the Effect on Mental Health

Megan stressed the need for more awareness of the potential impact of tinnitus on mental health.

According to a survey carried out by Tinnitus Hub, 64% of tinnitus patients reported that the condition had caused them mental health issues, with stress, anxiety and depression being the most prevalent.

On this theme, a large number of my contacts emphasised the importance of having the hope of a future cure.

Of course, whilst a cure does not currently exist, acceptance of the condition is key in moving forward and it is important for those affected to find a way of managing their symptoms to improve their quality of life. Yet, the reassurance that researchers are working to find a cure, can give those affected a level of mental comfort.

More awareness of the interrelation between tinnitus and mental health issues could have a positive effect on fundraising efforts and more researchers may be likely to embrace the challenge of finding a cure.

  • Prevention Measures

Speaking as a voice for musicians and DJs, Anne Savage highlighted the importance of promoting tinnitus prevention measures. As a Plug’em ambassador, Anne is passionate about reducing the stigma of wearing earplugs to protect hearing in environments with potentially dangerous volume levels such as gigs, festivals and clubs. In the discussion, it was suggested that perhaps there is a need for more strict decibel restrictions in the UK.

As a former teacher, I wonder whether this is something that needs to be addressed in schools, starting with a focus on volume levels in the classroom?

  • My Thoughts

Personally, I hope for more international interest in tinnitus research. I feel that this is a worldwide condition which needs a worldwide solution. I’d love to see collaboration between research institutions around the world where key focus areas of study are agreed. 

Surely, creating strong communication links in the research community and sharing outcomes and discoveries, could help drive research forward with more dynamism and impact.

Moving Forward Towards “a World Where No One Suffers From Tinnitus”

To summarise, the main priorities from the discussion were as follows: 

  • Create a UK tinnitus registry
  • Focus research on identifying biomarkers for tinnitus
  • Raise awareness of the effect of tinnitus on mental health
  • Promote prevention measures, e.g. more strict decibel restrictions in the UK

The British Tinnitus Association will combine the recommendations from both discussions and present them to government ministers in order to move forward the search for a tinnitus cure. 

The Secretary of State for Health and Social Care, Matt Hancock, has already taken an interest in raising the profile of tinnitus research on the political agenda. “I am very happy to look specifically at the case for increased research funding into tinnitus and to work with [Sir John Hayes] on it,” he responded, following the roundtable event.

It was an honour to take part in such a lively and positive discussion. I feel that bringing this level of awareness to tinnitus is a very positive step towards finding a cure. And, for me, I have a little more hope that I will one day be able to enjoy silence again.

name card

This article was recently featured on The Limping Chicken – the world’s most popular deaf blog! 

7 comments

  1. Oh wow Carly! What a fantastic piece of writing – really beautifully put together. You certainly made the most of that meeting and summed it up so well. Is this going to be used by any group? It certainly deserves to be published somewhere else. I love your signature at the end – great idea!
    Will be interested to see where this takes you.
    We’re in midst of packing but most can’t be done till we actually get the keys and can start moving in – seems interminable! But D Day is Thursday! Got lots of helpers lined up so should go smoothly.
    Keep us updated on reaction to this – i think it’s pushed you to a new level
    Xxx Tricia

    Liked by 1 person

    1. Hi Tricia!
      Thank you for the wonderful comment!
      This was a difficult one to write! There was a lot of scientific language being used at the event, and it was a challenge to try and briefly explain what was said, in a way that is understandable to non-scientists!
      The Limping Chicken featured the aritcle and it has been shared on social media, so hopefully the information about the event will reach quite a few people 🙂

      I’m excited for your move!! Hope the packing is going as well as it can be. I’ll be thinking of you both on Thursday…Hopefully, you’ll be sipping a gin on the upstairs terrace very soon!
      Lots of love x

      Like

    1. Hello Vera!
      How are you?
      Yes, it was amazing!! I still can’t really believe it happened! Hopefully things will start to progress with tinnitus research!
      Thank you as always, for you support.
      Best of wishes from your Yorkshire friend 😉

      Like

  2. Hi Carly. This is a great synopsis of what must have been a complex and multi-faceted experience during this seminar.

    It continues to perplex me how auditory research and corrective measures are so far behind ocular issues. Not to demean the suffering of people with true blindness, but there is so much advancement in eye problems compared to ear. A few years ago I walked into a clinic with double vision as a result of cataracts. Within three hours (prep and surgery included) I walked out with 20/20 vision restored. Astigmatism, retinal issues, corneal issues and many others all seem to have a medical or surgical solution which restores at least some, if not optimal vision. Glaucoma and Macular degeneration, the most dreaded aging problems, can be mitigated if found early enough. It is so sad that hearing issues lag so far behind, that you almost have to hope for total hearing loss so you can qualify insurance-wise for a Cochlear Implant. And then there is no guarantee it will work well for you. You know my less than stellar stand on hearing aids so I won’t get on that soap box again.

    As for tinnitus, I wasn’t aware that there was so many different levels. My is mild/moderate. It is a constant hum and doesn’t fluctuate. It doesn’t affect my lifestyle much, other than probably contributing to my hearing loss, but is more marked during quiet, like trying to get to sleep. Ironically, it’s at its very worst during hearing tests. The total quiet of the soundproof room makes it the most noticeable.

    Kudos to you and the participants in this seminar for your efforts to get more media and medical exposure to find cures for these excruciatingly difficult hearing problems.

    Liked by 1 person

    1. Hi Al,

      Thank you for your comment.

      This was quite a difficult piece to write, given all the scientific language that was used. But, I hope I have managed to expain things clearly.

      Yes, I often feel that research into ear issues and hearing loss seem to be lacking. I’m aware of fantastic advancements in hearing aid and implant technology, yet I feel that a lot more could be done. I am particularly hoping that an effective way of administering measured amounts of medicines to the inner ear will be developed soon. I also feel there are relationships between neck and jaw issues and ear conditions…I could go on!!!

      Yes, there are so many types of and reasons for tinnitus …a big reason for the difficulty finding a cure…

      Ha! My tinnitus is also at its noisiest when I’m trying to do a hearing test.Sometimes I think I’ve heard a beep, but then I question it, thinking it could have been my tinnitus!

      Anyway, thank you as always for your encouragement. It’s good to know you are cheering me on!!

      Best of wishes, Your blogging buddy, Carly.

      Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s