The Tinnitus Challenge: Managing Tinnitus in Everyday Life
Among all the complexities of hearing healthcare, tinnitus stands out as particularly complicated. With myriad causes and no known cure, the presence of tinnitus can be almost as distressing for hearing care professionals as it is for patients.
Tinnitus can be a symptom of hearing loss or a medical condition, and it is often difficult to diagnose its cause. Some people develop tinnitus for no obvious reason. The brain often interprets the noise of tinnitus as something harmful to an individual’s well-being. When people respond to tinnitus as a threat, they become stressed and anxious. Overtime, this negative reaction can become almost automatic – creating a feedback loop that exacerbates the experience of tinnitus.
Nick developed vestibular problems seemingly overnight, the lasting result of which is tinnitus and hyperacusis. A music journalist, Nick had to develop a new outlook on his life and work in order to adapt to his new condition. In this film, Nick tells us how CBT and the support of his family helped him learn to cope with tinnitus.
To make living with tinnitus easier, patients need help managing their negative reactions to tinnitus. But what can hearing care professionals do to empower tinnitus patients to cope with a very personal condition that is frustrating at best and at worst debilitating?
The Tinnitus Challenge
In December 2015, the Ida Institute hosted the Tinnitus Challenge. Together with an interdisciplinary group of 15 international specialists, including audiologists, ENTs, and psychologists, we explored what can be done to help those who live with tinnitus manage their condition. As the first person a tinnitus patient consults with might not be their audiologist, it is important that all professions on the frontline of tinnitus management have the resources to counsel patients and give them immediate guidance rather than keep them waiting with referrals.
Just as professionals who are not tinnitus specialists need resources to counsel patients, patients need ready access to clear, easy-to-understand information. This early intervention in the patient’s journey is crucial for someone who may be trying to understand their new symptom. Ida is currently working with the British Tinnitus Association on an online resource that will provide this ready information to patients, so that they have a positive message from the moment they first register their tinnitus.
Part of tinnitus management involves thinking about how we relate messages to the patient. Because there is no cure for tinnitus, patients who are suffering might be in a frame of mind that has them focusing on that negative detail, rather than on treatment options. It is the responsibility of the professional to help the patient leave the appointment with a more positive mindset - “I can do something to make this better,” or, “I will feel better in the future,” rather than, “There is no cure.”
A graph inspired by cognitive behavioral therapy that illustrates for patients that they will perceive their tinnitus as less intrusive as they become accustomed to it and learn to manage their reactions to it.
For those who have never experienced the severity of long-term tinnitus, it can be difficult to understand why patients are literally driven to distraction. Ida Senior Anthropologist Hans Henrik Philipsen interviewed tinnitus patients in the US and UK who suffer from tinnitus. The resulting ethnographic films explored patients’ lives with tinnitus, as well as the causes of their tinnitus – whether due to exposure to noise or illness.
Many tinnitus sufferers have comorbidity, meaning that they live with more than one serious condition. The films’ subjects illustrated this. Those interviewed were dealing with vestibular problems, depression, diabetes, and decreased lung capacity in addition to their tinnitus. In some cases, tinnitus was simply “one more thing to deal with.” For others, it is the greatest of their problems.
Robert Logan is a veteran with comorbidity including respiratory problems and tinnitus. Together with his wife, Robert describes the impact tinnitus has when you have other health conditions to take into consideration, including how healthcare professionals respond to tinnitus.
The stories captured in the ethnographic videos served as inspiration to the seminar participants. They saw not only how the films’ subjects are affected by tinnitus, but what their coping mechanisms are as well. Seminar participants agreed that a strong emotional support network appeared to make a huge difference in how well the patients dealt with their tinnitus. The patients found their support not only through their families, but also through organized groups, demonstrating that access to information about their condition was in itself enough to help the patients begin to reframe how they thought about tinnitus.
What tools can help patients manage tinnitus?
- Masking devices can cover the sound of tinnitus
- Group AR or therapy can give patients a support network
- Hearing aids, if tinnitus is a symptom of hearing loss
- Cognitive Behavior Therapy can help patients reframe their relationship with tinnitus
- Hope – the knowledge that they won’t always struggle with tinnitus
The group’s recognition of the value of a strong support network also served to highlight the importance of the therapeutic relationship between the clinician and the tinnitus patient. To succeed, the therapist must first and foremost understand their patients’ circumstances, how they are being affected by their condition, and what support they have outside of the appointment. With this understanding, the therapist can guide patients through treatment possibilities and coping mechanisms and help them understand the implications for the future. As an outcome of the seminar, Ida is currently developing a questionnaire with the participants to help professionals track how their patients are affected by tinnitus from appointment to appointment. We are currently using the Tinnitus Handicap Inventory to validate the questions.
“Tinnitus is a challenge for those who live with it and those who treat it, but we can all agree that too many people are affected by tinnitus for us to ignore it,” says Ida Institute Managing Director Lise Lotte Bundesen. “By facing the Tinnitus Challenge head on, we hope to find ways to make this condition more manageable for both the patients who live with tinnitus, and the healthcare professionals who care for them.”
The Ida Institute will launch several tools to aid tinnitus management for patients and professionals over the course of 2016. Our Tinnitus Challenge participants have all volunteered their time and skills to help develop these tools.