HYPERACUSIS CENTRAL

Setbacks: what they are and how hyperacusis patients deal with them

by | Aug 22, 2022 | Living with Hyperacusis | 3 comments

For hyperacusis patients, a setback is described as a temporary worsening of symptoms in response to certain loud sounds (William et al., 2021). In a 2019 survey, 43% of hyperacusis patients claimed that they needed weeks to months to recover from this increased sensitivity, while only 29% of patients reported that their clinician addressed this topic. 14% of the respondents even said they never fully recovered from a setback. Most respondents avoid loud sounds or wear hearing protection to prevent setbacks from occurring. A comparative study between pain and loudness hyperacusis patients concluded that patients with pain report more frequent and more severe setbacks than those with loudness hyperacusis (Pollard, 2019).

In this blog post, we will explore how two hyperacusis patients experience setbacks by looking at how they manage the setback and what they do to improve their symptoms. In this blog post, we will explore how two hyperacusis patients experience setbacks by looking at how they manage the setback and what they do to improve their symptoms.

Scott’s Experience with Setbacks

I’ve had hyperacusis for four years and my experience with setbacks has changed drastically over the course of time. My first two years years with this condition, I would say that I had a somewhat mild form. For the most part during this period, my setbacks were almost exclusively caused by noise incidents.

After a noise exposure that irritated my hyperacusis, I would always have increased tinnitus and sound sensitivity. On occasion I would experience a feeling of fatigue in my ears, like they had reached their sound input limit for the day. In either case, I would then seek a quiet environment to rest my ears and wear hearing protection at times to give my ears the quietest environment possible. My recoveries were quick, usually within a day or two I would be back to my baseline.

The only occasion I had an extended setback was after my second dose of the Covid vaccine. Strangely, I had no issue with the first dose, but the morning after the second shot I woke up with increased sound sensitivity that lasted for the better part of two months. Thankfully, I did eventually make it back to my previous baseline.

After around two years with the condition, I had healed considerably, so much so that it seemed like my condition was in a remissive state. Unfortunately, a seemingly innocuous noise exposure led to a setback that spiralled out of control and I quickly ended up with severe pain hyperacusis.

After I became severe — in addition to noise exposures — I began getting setbacks from things that were not noise related. I now find that instances where I have bad acid reflux can lead to increased sound sensitivity, and until I get the reflux under control the sensitivity remains heightened. Also, if I have a bad night of bruxing I will have heightened sound sensitivity, a worse baseline of pain and worse pain from noise exposure. Getting the reflux under control also helps with reducing bruxing. Additionally, I do jaw exercises, myofascial release and trigger point therapy to presently. I’m currently looking into medical treatment options for my reflux with a gastroenterologist and my TMD with a specialty dentist.

Jonas’ experience with setbacks

Personally, my setbacks are only induced by loud sounds. Things like stress, anxiety and a lack of sleep can aggravate the symptoms, but they do not cause them. I have experienced two major setbacks since getting pain hyperacusis about a year ago. Increased pain from such a setback has not lasted longer than a week. However, my tolerance to sounds can be lower for a few months, slowly getting back to baseline.

When exposed to loud unexpected noise, my first reaction is usually panic. If I am the cause of the noise, I can also be really mad at myself for not being more careful. I wonder if I will have a setback, how bad it will be and how long it will take me to recover. I’m also afraid that I have actually damaged my hearing which will make me permanently worse.

The hardest part is realizing that I’m back at the bottom (or close) with my ears. One sound can undo months of being extremely careful. This is very frustrating, to say the least. For the remainder of the day, possibly even the next day, I wear ear plugs so I don’t accidentally expose my ears to other painful noises and give them the chance to recover. While I prefer plugs over muffs, after a while ear plugs start to irritate, so I switch between plugs and muffs.

I haven’t found anything that reduces the pain immediately, but I try to take my mind off the pain and anxiety. Two things help me with this: playing video games (especially strategy games) or watching comedy so I will actually laugh and feel a little bit better (I am a big fan of the show “Impractical Jokers”). I have also started meditating, but I’m not experienced enough to notice a big effect on my state of mind, let alone my ears.

I try not to talk too much. At my worst, my own voice hurts even with protection. I send the people I’m living with a text that my symptoms have gotten worse and ask them to contact me by text if they need me. I also ask — if not beg — them to be even more quiet than usual for the next couple of days. In this video, the partner of a hyperacusis sufferer gives some tips on how to do that. Getting a long night of sleep seems to help, although I can’t say if it’s because the sleep actually helps my ears heal or if they would have been better anyway after 8-9 hours. I also try to eat as healthy as possible.

When the worst is over, usually after about 4-5 days, I try to work out a bit to let go of the stress. In the end, realizing that I will be worse off for a while, but have always improved, is the thing that gives me hope the most when facing a setback.

References:

Pollard, B. (2019) Clinical Advancements for Managing Hyperacusis with Pain. The Hearing Journal 72(10) 10,12. DOI: 10.1097/01.HJ.0000602900.16223.0e

Williams, Z., Suzman, E., & Woynaroski, T. (2021) A Phenotypic Comparison of Loudness and Pain Hyperacusis: Symptoms, Comorbidity, and Associated Features in a Multinational Patient Registry. American Journal of Audiology, 30(2) 341-358. https://doi.org/10.1044/2021_AJA-20-00209

Disclaimer:

The content of this post is the property of Hyperacusis Central. It is for medical education purposes, allowing viewers a “window into a hyperacusis sufferer’s world.”
The information in these posts is the opinion of the authors and is not necessarily the official opinion of the American Tinnitus Association, American Speech-Language-Hearing Association, American Hearing Research Foundation, or any other established organization.

For Health Care Practitioners: The content is provided only for medical education purposes and all advice is based on anecdotes or evidence referenced where applicable. Although the authors have made every effort to provide the most up-to-date evidence-based medical information, this content should not necessarily be considered the standard of care and may not reflect the individual practices in other geographic locations.

For the Public: This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. However, this condition is not well understood or studied, therefore many individuals with this condition are given detrimental advice by their practitioners, evidenced by the worsening of these conditions after seeking treatment from a practitioner.

These are the opinions of several sufferers who have learned through experience and independent research of reputable papers, articles and studies. You should contact your own physician or other qualified healthcare provider with any questions you may have regarding your medical condition, and we encourage you to discuss this content with them to avoid improper treatment. Relying on information provided by this content is done at your own risk. In the event of a medical emergency, contact your physician or dial the number for your local emergency services immediately.

3 Comments

  1. Luc

    I read we have the same issues trying to deal with the illness, everybody… but some of your have some "chance" (if I can say…) that the the sound levels are going back to baseline. Mine are always worsening when setbacks occur. Only silence durings month improves just a little the situation (but clearly never returns to the initial point)

    Reply
  2. Anonymous

    Hey Jonas
    Your experience seems similar to mine in my first year. It’s my fourth year now. I can’t say if my symptoms are better but my life certainly is.
    Healthy habits do help. What helps more is to start loving the healthy habits.
    The other thing that helps is to be very kind to oneself and one’s ears. Say “it’s ok my ear that you hurt. Don’t you worry, my ear”.
    And find pleasure for your ears. Maybe the right kind of music, the right poetry. For me the trigger was my girlfriend’s kiss. It took me months to let her this close from my ear but when her lips touched it I cried and I felt better.
    There is possibility for good feelings with your ears and your brain can learn that, your neurones can rebuild this route.
    I hope all of this is possible for you. Maybe you suffer too much for the moment to experience any of this.
    I which you the best from the bottom of my heart. We learned what suffering means and this is the definition of compassion.

    All the best.

    Reply
  3. Anonymous

    what wise and wonderful and practical and inexpensive advice, to be kind and loving to one's ears instead of hating them for causing pain. thank you! xo

    Reply

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