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?
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
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.
- 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.