HYPERACUSIS CENTRAL

Dr. Kelly Jahn on Noxacusis Research: “We Feel That Nothing Compares to Learning Directly From Patients Themselves”

by | Jul 10, 2023 | Research | 7 comments

Dr. Kelly Jahn is an Assistant Professor of Speech, Language, and Hearing at the University of Texas at Dallas (UT Dallas). She started her own lab at the university and strives to develop improved diagnostic tools and treatments for hearing loss and hyperacusis.

Hello Professor Jahn, thank you so much for meeting us.  

Thank you for having me! 

How did you first become interested in hearing and decide to pursue the training that you have?  

That’s a good question! Like many people, I did not know anything about audiology or hearing science until I was already in college. I only knew that I wanted a career that combined science and math with helping people. I tried a few different majors, and eventually ended up working as a research assistant in the Hearing Conservation Laboratory at the University of Connecticut. There, I began learning about noise exposure and ear damage – I enjoyed the topic so much, that I decided to apply to graduate school. I started off with the clinical doctor of audiology (AuD) program (the 4-year degree that audiologists in the US need to earn to become an audiologist) because I thought that I wanted to primarily help patients with hearing loss in a clinical setting. However, I kept gravitating back to the research lab, and I realized that I could personally help more people by conducting research. So, after completing the AuD, I continued on to do a research degree (PhD) in Speech and Hearing Science.  

Sounds like you have really found your place! How did you become interested in noxacusis and when did that interest arise?  

This is a similar type of answer – I’m learning that a lot of things happen because you are in the right place at the right time! Like most audiologists (and healthcare professionals in general), I received very little formal education or clinical training in hyperacusis during graduate school. I never thought much about hyperacusis until I began my postdoctoral research fellowship at Harvard Medical School and Massachusetts Eye and Ear in 2019. During that time, I received a K01 award from the NIH NIDCD to study biomarkers of enhanced central gain in individuals who have hyperacusis. Due to my background in audiology and hearing science, my initial studies focused on presenting sounds and measuring subsequent behavioral and brain responses to those sounds. While those traditional hearing science methods are informative and important in many ways, I realized that they preclude testing individuals who have severe noxacusis. In speaking with individuals who have noxacusis, I learned how complex and multifaceted the condition is, and how debilitating it can be. My primary career goal has always been to help people improve their quality of life, so I became very interested in thinking outside the traditional audiology/hearing science box to study the condition and potential treatments.  

Before I moved to hyperacusis, I did mostly cochlear implant research. That was from about 2012-2019.  

That’s very cool! We are definitely glad you were in the right place at the right time.  

Me too!  

What is your current research focusing on?  

I finished the postdoc position and started my own lab at the University of Texas at Dallas (UT Dallas) in 2022. Our lab is called the Neuroaudiology Lab, and the overarching goal of our work is to develop improved diagnostic tools and treatments for hearing loss and hyperacusis. I’d say that we currently apply a combination of more traditional versus exploratory approaches to studying hearing and hyperacusis. We are conducting several qualitative research studies to understand more about the lived experience of hyperacusis in children and adults. The primary goal of this work is to inform the development of multidisciplinary research questions that go beyond traditional audiology and hearing science concepts. We are particularly excited about potential collaborations with our Center for Advanced Pain Studies at UT Dallas. We are also surveying healthcare providers across the United States to understand the barriers to hyperacusis education, diagnosis, and management. Since I am an audiologist and hearing scientist by training, we are continuing to use traditional sound-evoked methodologies to study behavioral and brain correlates of auditory perception. This Fall, we will begin a study funded by the Department of Defense to identify biomarkers of hyperacusis in autistic adults. I also maintain a line of research aimed at improving cochlear implant outcomes for children and adults, which is the type of work that I primarily focused on before transitioning to hyperacusis.  

The Neuroaudiology Lab members

The results of the survey of healthcare providers will be very interesting!  

It is interesting! We completed our audiologist survey and just submitted the manuscript for review  

We can’t wait to see the publication! The purpose of the recent focus group you hosted was to learn about patient’s symptoms and characteristics of their sensitivity and pain. Can you talk a little more about the goal of this research? Why did you choose to focus solely on pain hyperacusis/noxacusis?  

The focus group was a huge success, and we are so appreciative of the participants’ time and thoughtful responses. We are working on consolidating the responses from the focus group and putting together two virtual follow-up activities. We hope to distribute the follow-up activities later this month. The primary goal of the focus group was to help us understand noxacusis from the patient’s perspective and to serve as a basis for developing new research ideas that consider the direct experiences and needs of the community. Even though some of this information is available in the literature, we feel that nothing compares to learning directly from patients themselves. We are focusing on noxacusis because most experimental studies that use paradigms involving sound (including my own) leave out individuals who experience sound-induced pain. We want to design studies to better understand the condition without causing pain, and we felt that a focus group would be a good place to begin generating ideas.  

We are very excited to see where it goes. 

I’m so glad to hear that. I really hope that this type of approach will work.  

Patients were very relieved to hear that they could participate without having to speak or listen to audio!  

That was one major reason we wanted to do the focus group and leave it very open-ended. 

You mentioned a potential collaboration with the Center for Advanced Pain Studies. Is there anything more you can share about this?  

We presented the major themes from the focus group to our colleague at the UT Dallas Center for Advanced Pain Studies, and he is very excited about potential collaborations. We had a great discussion, but we are at a very early stage so I do not have a ton of details. I think the results from the follow-up activities will help us hone in more on a more specific direction.  

We are excited to learn more about that later! We imagine anyone in pain medicine would be very interested to hear our descriptions of the pain noxacusis patients experience. 

Yes, we had a very interesting conversation!  

You have previously told us you are working on estimating the prevalence of pain hyperacusis. Is there anything you can tell us about that publicly? In your opinion, why is it important that we have an accurate estimate of the prevalence of pain hyperacusis?  

This is something that I am very interested in pursuing, and I have been discussing study design with colleagues in the statistics department at UT Dallas. We are still in the early stages of study design, and we will need to apply for grants to fund the study. There are a few reasons that I think it’s important to have an accurate estimate of prevalence. Several individuals with pain hyperacusis have told me that it would be helpful to have an accurate estimate for healthcare purposes (e.g., treatment plans, workplace accommodations, etc). I had not considered this before speaking with patients themselves. As of now, pain hyperacusis is often lumped in with “hyperacusis” in general, of which prevalence estimates range from 9 to 15%. This makes it difficult for patients to get the services they need.  

Dr. Jahn and one of her graduate students

That is a great point about workplace accommodations. And we have wondered about all the different “hyperacusis” estimates we see from various sources. It seems that sometimes misophonia is lumped in with this as well.  

Yes, I think it often is. Oftentimes, prevalence is calculated from a very general question about decreased sound tolerance  

What advice would you give to patients who are not believed by their doctor and/or audiologist, and given advice that is contrary to their own experiences?  

This is a difficult question, because I am fortunate enough that I have not found myself in this position as a patient. It is frustrating to hear that so many individuals with pain hyperacusis are dismissed. My main piece of advice is to always remember that your experiences and your concerns are valid. It might take a while to find a healthcare provider who believes you and/or who is able to work with you to develop an individualized plan of care. You are your best advocate. Try to keep advocating for yourself, even though I am sure that it can be exhausting. Continue participating in patient support groups, whether virtual or in-person. They will help to validate your experiences and remind you that you are not alone.  

Great advice. Many sufferers don’t know what they would do without the internet and the ability to “meet” other patients experiencing similar symptoms. 

I’m glad that we now have the ability to connect with people all over the world, relatively easily. 

Building on the previous question, how do you think patients can better “educate” healthcare professionals about their noxacusis?  

I know this question is about what the patient can do to help educate healthcare professionals, but I want to emphasize that the onus should not be entirely on the patient. That being said, one of the most powerful things that you can do is share your personal lived experiences with healthcare professionals. If you are comfortable doing so, consider sharing the details of your symptoms and explain how they have impacted your own quality of life. Invite healthcare professionals to follow patient support groups such as Hyperacusis Central on social media. It has been very eye-opening for my students and me to hear your personal stories, and it motivates us to continue innovating in this area. It’s also evident that many individuals in the noxacusis community are up-to-date on the latest research and clinical trends. If a healthcare professional is open to learning more about the condition, you could respectfully direct them to the relevant literature.  

Do you have any theories behind what exactly is happening in the ear/auditory system when setbacks occur, especially those that either temporarily or permanently increase pain in noxacusis patients?  

Given what we learned during the focus group, I am particularly intrigued by the theory described by Noreña and colleagues (2018). They suggest that overuse or damage of the tensor tympani muscle in the middle ear can lead to inflammation and, possibly, neural hyperactivity along the trigeminal pathways. Most patients describe symptoms consistent with a neuropathic type of pain (e.g., burning, stabbing) that does not always occur in the ear (i.e., referred pain). These descriptions align well with the middle ear/trigeminal nerve hypothesis. Of course, we still have a long way to go to determine the underlying cause of noxacusis and the setbacks. It is possible that different mechanisms are at play for different people depending on the etiology (e.g., TBI, noise injury, autism spectrum disorder).  

Great timing for you to mention Noreña, because we were about to ask your thoughts about his theory and that of Fuchs. Since you already shared your thoughts about Noreña’s theory, are you familiar with the Fuchs’ theory regarding type II afferents? If so, what are your thoughts on those ideas?  

I think the data from Fuchs and others (Flores et al. 2015) represent an important step toward understanding the functional role of Type II afferents and potential molecular pathways for signaling sound-induced tissue damage in the inner ear. This theory is largely based on data showing that type II afferents share anatomical and physiological commonalities with fibers in the somatosensory system that warn of tissue damage (i.e., somatic C fibers). I hope to see more work in this area that attempts to identify possible links between pain perception and excitation of the type II neurons.  

Thank you very much again for joining us today! We look very forward to hear about the results from your research in the future. 

Thank you for having me! It was great to speak with you.

7 Comments

  1. Maura Black

    Fantastic job doing this interview! Super useful and exciting. Very well written, and will be useful to patients in educating doctors and family members!

    Reply
    • jonas

      Thank you!

      Reply
      • Madeleine Björfjäll

        Heartfelt thank you’s for this interview! An eye opener for doctors and relatives. So important to make visible those of us who suffer from this.

        Reply
        • jonas

          That’s why we do it!

          Reply
  2. Kathy

    Thank you for this research it is a long time coming!! I DO hope that more research will be done as well for severe and reactive T with loudness H as well. There are different levels from mild to severe and debilitating. For some reason perhaps because I always (after 2/12 yrs of “getting used to sound”) protect my ears when going out. I can relate to noxacousis as well. I had this severely for about a one year , but the pain was mostly all the time. Then this continued for another three years with a stinging sensation. I do suspect this”stinging “would return if not for hearing protection. We live in a noisy, loud world . With severe loudness H your world is that much louder. Thank you again for this interview…very promising!

    Reply
    • Karrie

      You’re so smart to continue using the hearing protection so the stinging doesn’t return. Many think they’re healed and take chances just to get more set backs.

      Reply
  3. Dana Hall

    J.D.& Dr.Jahn, The description of what you feel will go a long way to inform others as to why this is so debilitating. Thank you so much for advocating for any and all who suffer moment by moment with these dreadful afflictions.

    Reply

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