Harnessing the Power of Tinnitus Patients’ Experiences
By Hazel Goedhart
More than four years ago now, I went to bed one night and noticed a loud piercing sound that seemed to come from my right ear. I didn’t panic right away, but a few days later I could not control my anxiety and ended up taking a few months of sick leave from my job.
During the first week of this ordeal, I discovered the Tinnitus Talk support forum, where I read many stories from others suffering the same fate. It made me feel less alone and confirmed that I was not crazy for being so distressed about this phantom sound. I focused mostly on Tinnitus Talk’s Success section, where I was encouraged to hear from others who had, over time—even though their journeys were often hard and full of setbacks—learned to live with their tinnitus.
I also got curious about tinnitus research due to the dedicated Research News section. I learned that little was known about the mechanisms causing tinnitus, and treatments were hard to test because they seemed to have very different effects on different people. Researchers call this heterogeneity, and it simply means that your tinnitus is likely different from mine.
A couple of months later, when I was starting to feel better, I reached out to the managers of Tinnitus Talk to ask about volunteering opportunities. I understood that even though I was on a path of acceptance and had started to believe I could live a relatively normal life with tinnitus, not everyone suffering from tinnitus might be so lucky. I had read many stories that were all different. Some people got habituated but then had a setback due to a traumatic event. Others improved but never felt quite right. Most unfortunate of course are the ones who suffer for years or decades without relief. I wanted to do whatever I could to help them.
I received a lovely response from the Tinnitus Talk founder, Markku, and after a few Skype calls learned a lot more about the nonprofit organization behind the forum, Tinnitus Hub. Run by just a few volunteers, I was amazed at what they had achieved. Not only were they running the forum, but they were also making contributions to tinnitus research through data collection. That really excited me! Knowing how much more there is to learn about tinnitus and its different forms, I thought surely a global online platform would be a great way of gathering large amounts of data. I was hooked and kept volunteering, up to and including today. I’ve taken on the role of director, next to my day job at a financial services firm.
This chart from a 2019 Frontiers in Public Health paper that Tinnitus Hub gathered data for shows mean treatment outcomes on a 1–5 Likert scale clustered by treatments with an acoustic component (yellow) and without an acoustic component (blue). Error bar accounts for the standard deviation across all 25 treatments. (TRT, Tinnitus Retraining Therapy; CBT, Cognitive Behavioral Therapy; TMS, Transcranial Magnetic Stimulation; HBOT, Hyperbaric Oxygen Therapy.) Note that in 2017 the epilepsy drug retigabine was pulled from the market for severe side effects.
Academic research is a game of patience. A paper we coauthored was published in Frontiers in Neurology in January 2022, for which we gathered the data about five years ago.
The data came from two surveys we conducted, with a total of over 11,000 respondents. It’s important to keep in mind that this sample probably consists largely of people who were distressed enough about their tinnitus to seek help online—in other words, it’s not a random sample of people with tinnitus. But instead of viewing this as a potential obstacle to drawing useful conclusions, it’s helpful to remember this is also the group who are suffering the most—and who researchers and doctors should want to study in order to help them.
Our first survey in 2016 explored what kinds of treatments people had tried, including home remedies, and the effects. Our data showed 58 percent of respondents had tried treatment(s), with over one-third of this group having tried more than three different treatments each. The most frequently tried treatments were self-administered sound therapy (31.1 percent), supplements/herbal medicines (23.1 percent), antidepressants (15.6 percent), and hearing aids (13.6 percent).
Regrettably, on average, respondents reported they did not experience improvement from these treatments. The most effective treatment was the medication retigabine, with 28.3 percent of those who tried it experiencing a “big improvement.” Retigabine was approved in the European Union and United States as an epilepsy drug, and sometimes prescribed off-label for tinnitus. However, due to severe side effects, it was pulled off the market for all use in 2017. Incidentally, Thanos Tzounopoulos, Ph.D., of the Pittsburgh Hearing Research Center, is working on a revamped version of the drug specifically targeted at tinnitus.
Our second survey in 2017 looked at physical and psychological factors associated with tinnitus. It showed that people are more likely to experience higher tinnitus loudness, annoyance, and awareness if they are female or have a head or neck injury, Ménière's disease, headaches, fullness in the ears, or any type of hearing loss. This means that when it comes to tinnitus severity, a complex interplay of factors may be at work.
Most of the current knowledge about tinnitus and treatment outcomes comes from samples of patients visiting healthcare centers or taking part in clinical trials. Sample sizes are generally modest and do not necessarily represent the people who most need help with their tinnitus.
On the other hand, our dataset shows high numbers of people who struggle with tinnitus and are trying out conventional or nonconventional therapies that often have no proven benefit; indeed, most of them do not experience improvement. This underscores the need for finding effective, personalized, and accessible treatments for people suffering from tinnitus, which will require much larger datasets than have so far been gathered.
Future research should investigate which factors explain the effects of treatment on individuals. As our 2016 survey shows, treatment outcomes can vary greatly between people. In fact, that survey formed the basis of another academic paper that we coauthored in Frontiers in Public Health in 2019. It showed that certain personal and tinnitus characteristics can to some degree predict treatment outcomes. This means that there could be “subtypes” of people with tinnitus who respond to certain types of therapy while others may require a different therapy.
My tinnitus these days is manageable, although it still bothers me during moments of stress. But my goal of helping to find a cure has not changed. Our surveys show the promise of large datasets and the power of online communities coming together for research. So, my dream is to crack the case of tinnitus through big data.
Hazel Goedhart is a director and the chief strategist for the U.K.-based organization Tinnitus Hub, founded by Markku Vesala. For more, see tinnitushub.com and tinnitustalk.com.