I remember when I was in 1st-3rd grade, doctors, therapists, and school staff would try to expose me to noise through play. I used to see an occupational therapist twice a week, who would try to make me engage in play that involved noise. She would try to get me to play games that had buttons that would make noises, rummage around in toy boxes to get things to play with, turn on fun aqua machines that had motors, and other activities that either involved me making noise or her making noise. These activities cause me physical throbbing and stabbing pain. I had an audiologist who knew that I enjoyed listening to books, and so came up with a plan that required me to gradually increase the volume of my books, on my iPad, and TV. Turning up the volume was physically painful for me, so I stopped listening to books, using my iPad, or watching TV. Staff at school would try to make me eat in the cafeteria with my friends, participate in recess, or fun related arts classes.    

This would cause my pain level to increase and end up causing me to develop a migraine. Unfortunately trying to use play or fun activities to expose children with hyperacusis symptoms to noise, is extremely common. This is likely because the adults do not think that they are causing the child physical pain or harm, and simply think that they are having an emotional reaction to the noise. Very young children often have a hard time communicating the fact that they are in physical pain and may express this by crying, or tantruming, and even the ones who are able to communicate there pain are almost always dismissed. Unfortunately using play to expose a child to noise, that is in actual physical pain can have harmful consequences both short term and long term, by causing immediate physical pain, lingering increases in pain levels and setbacks, and traumatizing the child.

First, regardless of whether the noise is occurring or coming from a fun activity or during a time while the child is happy, if they experience physical pain from sounds, it will still cause them the same amount of pain. I know this from personal experience, turning up the volume on my audiobooks was physically painful for me, despite how much I enjoy books. This is why some children will cry or tantrum even during play therapy, because they are still in physical pain.

Second, for many people with hyperacusis the pain lingers long after the noise is over, and this increased pain level causes their tolerance level to drop even further. The days after I had therapy sessions with the OT, I would have lingering migraines. I remember the OT herself saying that I was more cooperative during our Monday sessions then our Wednesday sessions, this was because the pain had built up by Wednesday causing me to be even more sensitive. Whenever I was forced to participate in a “fun” event or activity such as the cafeteria, recess, or related arts with my friends I would have horrible migraines for about a week afterward. Using play to expose children to noise, can ultimately worsen the severity or their hyperacusis.

If the physical harm of play therapy isn’t enough of a reason to some people, or they refuse to accept that they are actually causing any physical pain or harm at all, there is an emotional reason why they should not use play therapy as well. Using play to expose children to noises that cause them physical pain is very traumatizing. The child will start to develop associations such as “fun is painful” or “games are painful.” I know this from personal experience, by the time I was nine I actually thought and would say to my Vision Teacher that “I did not like to have fun.” This is because that word had been so frequently used by adults when exposing me to sounds that physically hurt me.

Given that we don’t always know whether or not a little kid is in actual physical pain from noise or not, we need to assume that they are until they can confirm that they are not, so as not to risk harming them.

Unfortunately so often people with severe pain hyperacusis are told by their friends, family, and society that they just need to “push themselves to do things despite the pain.” I have been told this message countless times and in countless different rewordings throughout my life.

I have had school staff, relatives, and people that I barely even know tell me things like: “pain is a part of life,” “no pain no gain,” “do it despite the pain,” “lots of people are in pain,” “you need to build character and endurance.” When I was younger and still to this day, when I try to explain about why I am unable to tolerate, participate, or do things because of the physical pain it causes me people often make these comments.

I remember very clearly a staff member at my school telling me “your going to have to do these things eventually it’s just a matter of whether you do them willingly or kicking and screaming,” and “your going to just have to go to the store” I have even had people who know me very well purposely ask me questions like “do you want to go with us out to the mall?” So that when I tell them no they can then start berating me about needing to “push myself and do things despite the pain.”

Often people think that they are being helpful by saying these things, but in reality they are being extremely offensive, ableist, and showing a great lack of empathy. People need to realize that they can NOT understand what it is like to be in someone else’s body, and it really makes me angry and hurt when people say that if they were in my situation they would do blank.

Well that’s very easy for them to say because they are not in my situation. Another thing people so often do, thinking that they are being helpful is comparing me either with other people who have hyperacusis or chronic pain and saying “so and so is able to do this or that.” Everyone’s body is different, even people with the same condition have different symptoms and severity, as well as different pain thresholds.

It’s not fair to compare people with hyperacusis with each other or other spoonies, zebras, or pain warriors. All statements like this do is make the person who is already in intense physical pain feel emotionally upset or bad about themselves. The person is likely struggling to just endure their pain on a daily basis. Also it is a very quick and easy way to push people away from you, or form a bridge in your relationship with them.

Even though it seems like people may be being overly sensitive or don’t have any endurance, it’s actually the opposite. Those with severe pain hyperacusis have to endure intense pain everyday and already push themselves just to do the things that they are doing even if it doesn’t seem like much to other people.

So when people explain to you about their pain and limitations be empathetic, and caring. Remember that pain is invisible, and you never know how much pain another person is truly in. For those of you who have been on the receiving end of such comments and statements, I am truly sorry and you never deserved to have had those things said to you.

Always remind yourself that your pain and sensitivity is NOT your fault. You endure a lot more pain on a daily basis than most people do, and are warrior even if no one else realizes it!

I was only eight years old when I was formally diagnosed with hyperacusis, although I had been experiencing symptoms for about a year and a half prior. Unfortunately as hyperacusis is such a rare condition and there was so almost no research on pain hyperacusis, meant that I was often not taken seriously. There are so many things that I have had to learn on my own, about the medical side of hyperacusis that I wish I knew when I was younger, so I wanted to share some things that have helped me navigate medical disbelief and misconceptions about hyperacusis.

You Are The Expert In Your Own Body

Let me ask you something. Who do you think knows more about Native American culture, a historian who studied it or an actual Native American who grew up on a reservation? I don’t know about you, but I would listen to the actual Native American over the historian. The same is true with doctors. They might have gone to medical school and have a degree, but they do not live with hyperacusis and have never experienced it for themselves. If the medical advice or treatment that your doctor recommends is worsening your pain and hyperacusis, then listen to your body and do what you know is best for you. Remember ultimately YOU are the only one who is going to have live inside your body and deal with the pain.

Do Your Own Research

Most doctors have never even heard of hyperacusis and those who have mostly still think that it is psychosomatic, and don’t acknowledge the physical pain. One of the most important skills for anyone with hyperacusis is being able to do their own medical research. If you know what you are experiencing in your own body and your doctors refuse to take you seriously, show them the facts or the lack of them. I have been doing my own medical research since I was 11 years old. A good way to start doing medical research is to specifically search for things like “pain hyperacusis” and “hyperacusis setbacks.” Make sure that any facts or research you present to your medical professionals is from a credible source, so that they will take you more seriously. I have found that the best way to go about presenting my research to doctors is write my own research paper, tying together my own personal experience with facts, statistics, and cited medical research. Here are a few medical articles by Hyperacusis Research in medical Journals to get you started: https://www.entandaudiologynews.com/features/audiology-features/post/unravelling-the-mystery-of-hyperacusis-with-pain

https://journals.lww.com/thehearingjournal/Pages/articleviewer.aspx?year=2019&issue=10000&article=00004&type=Fulltext

Understand That There Is A Lack Of Information

Keep in mind that there is currently very little research done on pain hyperacusis. Whenever there is a lack of information about a condition it gives medical professionals the ability to be able to claim that it is psychosomatic. This puts patients in a difficult situation because they have very little information to use in their defense. Whenever your doctors gives you treatment advice on sound exposure, ask them to show you 3 peer reviewed medical studies in which this was effective for patients with PAIN hyperacusis. If they make any claims about your pain being purely psychological, ask them to show you an article in peer reviewed medical journal that clearly states that there are no physical mechanisms involved with hyperacusis. Hint they won’t be able to find any of this information, because it doesn’t exist! Remember you have the right to question your doctors recommendations or anything they claim as fact! Another thing that I have found helpful is if you are unable to find any medical information that supports what you are experiencing, then find information that can be applied to your situation through logical comparisons. For example research about how fibromyalgia was considered a psychosomatic until 2011, and about how patients with XERODERMA PIGMENTOSUM (sunlight allergy)  conditions worsened from exposure. If all else fails, remind your doctor that there are still a lot of things medical science doesn’t know yet, and that you are the one in your body not them.

Everyone’s Body Is Different

Some cancer patients get better with chemotherapy, and others don’t. Some patients with epilepsy are able to be treated with certain medications, for others they don’t work. However for these more common and better understood conditions you less often find doctors saying “even though this is making you worse, it worked for my other patient with your condition so let’s just keep doing it.” Just because a particular treatment helps some people with hyperacusis doesn’t mean that it will have the same affect on you. Everyone’s symptoms and severity is unique and there is no one size fits all approach especially for hyperacusis. Scientists have already identified 5 subtypes of hyperacusis: loudness, annoyance, fear, pain, and vestibular. Even within pain hyperacusis new research is starting to show that there may be at least different types and causes. Remind your doctor of this information when they mention about success they have had with other patients.

“My name is David Vance, I am 36 years of age from Toronto, Canada. I developed Hyperacusis 3 years ago after receiving chemotherapy treatments for Non hodgkins Lymphoma. The hyperacusis elevated over time, and it’s been hard managing life in almost all areas. I take things day by day, and I keep trying to search for a cure. Hyperacusis has changed my life immensely. I have a different set of friends, who I have met online, I barely see family or friends anymore. No more social gatherings, concerts etc. I was in the music business for many of years, and I believe that has contributed to my sound sensitivity. The ears are very delicate, and we need to take extra special good care. I am grateful I am alive, and here to help search for a cure for Hyperacusis, and to help others who go through it as well.”

Here it’s a poem Dave wrote about his experiences living with Hyperacusis. 

“Never ending

Trying to make it better

What can I do?

Some options to take

To loud

To much noise

It’s all around me

There’s no hiding

Piercing my ears

Piercing my head

Piercing my brain

The light around me

Giving me the shakes

Searching for silence

Searching for peace

Searching for love

Searching for ease

Just want things quiet

So I can feel

To help the world

Passion inside me

Here for a reason

Tune into the energy

Follow the universe

Always a way

Covering my ears

Keeping close to my soul

Listen to the messages

I’m not a lone”

Dave’s hyperacusis story has also been featured in a newspaper in Canada called The Globe And Mail: https://www.theglobeandmail.com/life/article-it-feels-like-a-knife-is-being-stabbed-into-my-ears-says-sufferer-of/

The Fourth of July is known all across America for being celebrated with fireworks. For me and many others living with hyperacusis, the Fourth of July is one of the most painful days of the year due to the noise. Every year since I was 9 my mom would take me to my grandma’s house on the Fourth of July, as she has an underground basement and doesn’t live near any major firework display locations. Even from underground with hearing protection the fireworks cause me pounding pain, which lingers after the fireworks are over. 

Fireworks are 150-175db, which is more than twice as loud as the OSHA guidelines for safe noise levels. Fireworks are not an essential part of life, and silent fireworks have been invented, although they are currently not being mass produced. Those with hyperacusis suffer intense physical pain from the noise of fireworks, it is literally a form of torture for us. Imagine being beaten in the head and ears and the pain lingering like an injury, that is what fireworks are like for those with hyperacusis. Fireworks are also bad for the environment as they release a lot of toxins and chemicals into the air, they also scare farm animals and wildlife. Despite all of the harmful effects to both people and nature, fireworks continue to be a major way people celebrate special occasions.

It is illegal to beat a person up or give them electric shocks for fun, well that is what people are doing unknowing to those with hyperacusis, when they set off fireworks. Although there are laws in some states that make setting off private fireworks illegal, these laws are rarely enforced especially on the Fourth of July. Given that fireworks have no real value other than being a source of entertainment, and actually physically harm some people, there needs to be a ban on fireworks that make noise. 

One of the most frustrating things about having hyperacusis, in addition to the pain of course, is having doctors not believe me about my pain. Throughout my life, especially when I was younger, I have had so many doctors say that the pain I got from sounds was just an anxiety issue. I have even had doctors who told me that I wasn’t really in that much pain, and was simply being manipulative or had behavioral problems. I remember one neurologist that I saw when I was 9 who said that my hyperacusis was simply “drama.” An audiologist that I saw at age 8 who said that I was simply using my hyperacusis as an excuse, and countless therapists who said that I just needed to “change making thinking about sound and that it was my anxiety that was causing the pain.” Due to their refusal to accept my reports of being in physical pain from sounds seriously, my hyperacusis was treated like a phobia or psychosomatic condition, with sound exposure and behavioral therapy.

I remember when I was 8 being taken to see an occupational therapist twice a week at the hospital for desensitize. In the sessions she would try to have me engage in activities that made noises that caused me pain, in addition to this we had to walk through the loud parking garage and hospital to get there. Once in the room in addition to the sounds that the OT was trying to expose me to, I was often subjected to the sharp painful sounds of hearing other patients in the hallway or other rooms. These sound exposure sessions were painful for me, and did not help my hyperacusis at all. I saw an audiologist a few months later who implemented a program where I was to gradually turn up the volume on my audio books, and start to listen to music and white noise. Turning up the volume on my books was painful and so was the music and white noise. The pain would then linger even after I turned the device off, and the increased pain made all of the other sounds hurt even more. When I was 11 and stayed in a psychiatric hospital, due to attempting suicide to try to escape from the daily pain and disbelief of hyperacusis.Unfortunately these are just two examples and I have many other memories of experiences like these. When I would tell the doctors that sound exposure was making my hyperacusis worse, they did not listen and would insist that my body would eventually over time get used to the noise.

When I was 11 years old, I and had had hyperacusis with pain for about 5 years at the time, I attempted suicide due to my hopelessness and desperation from the pain, and ended up in a psychiatric hospital. They didn’t make any noise accommodations for me during my stay, and I was forced to participate in activities all day with kids who were constantly screaming and banging. I was also exposed to loud music, movies, guitars, vacuum cleaners and much more, despite alerting staff that I was in extreme pain. The two weeks there was the most painful experience of my life so far, my head felt like someone had broken the bones in my skull and my ears felt like they were on fire. I was not allowed to even go in my bedroom to lay down during the day, barely got any sleep at night due to the noise and pain, and had to where hearing protection 24/7 because I didn’t have a quiet place to go. ( The extreme pain only made me feel more suicidal.) The doctors tried to convince my parents that I was not in any physical pain and it was just a behavioral problem. I was discharged with a behavioral plan which involved taking me off of Home & Hospital instruction and  attending school, being near the refrigerator at home, and not going in my soundproof room or closet. 

As I have gotten older I started to do my own medical research, as well use social media to connect with others who have hyperacusis. I found that my experiences with doctors not taking my pain seriously, brushing it off as physiological, and insisting that just gradually expose themselves, were unfortunately not uncommon.  According to a survey by Sanford (CoRDS), “66% of participants experience daily or continuous pain from noise exposure, for 25% the pain lasts between 5 and 24 hours for 28% it lasts days.” According to a research paper published in ENT and auiology news, Volume 27, issue 6, January/February 2019, “An even more significant finding that has historically been neglected is the issue of setbacks from new noise exposures. When asked, ‘how often does the participant have a setback that makes their condition worse?’, 36% indicated at least weekly and only 25% responded with rarely or never. This setback makes the sufferer’s condition ‘moderately worse’ for 50% and ‘worse than it ever was’ for 23%. Figure 3 shows the results for the question, ‘how long does it take for the participant to recover from a setback?” Recovery takes days for 59% and weeks for 24%. Recovery is also proportional to the loudness and/or duration of the impacting noise.” According to Clincal Advancements in Managing Hyperacusis with pain, published in the Hearing Journal, volume 72, issue 10, pages 10-12, October 2019, “A clinically focused question asked: “If you have had a clinical evaluation for your hyperacusis, did the clinician ask you any question related to setbacks?” Only 29 percent reported that the topic of setbacks was covered by their clinician. These results represent critical components that need to be comprehended in clinical evaluations. A patient’s history of setbacks should be considered when determining the best treatment approach and expected outcome. Many patients will likely rank setback prevention and reduction of pain symptoms as their top priorities. For some, perceiving sounds as excessively loud may be a low priority. In summary, the new 2019 brief hyperacusis survey reinforces the primary findings of the extensive Sanford registry. Both surveys suggest that hyperacusis with pain is common among hyperacusis sufferers. Also, many sufferers experience setbacks that temporarily or permanently make their symptoms worse. Therefore, setback prevention should be a top priority of clinical treatment programs.” 

Unfortunately the issue of doctors not believing or taking their patients pain or symptoms seriously is not only a hyperacusis issue. Through my online advocacy and connecting with others in the chronic pain and rare disease community, many of them have been told by doctors that their pain was “in their head.” Up until 2011, fibromyalgia was considered to be a psychosomatic condition, and still today many patients with this condition report not being understood or taken seriously by the medical community. Often those with complex regional pain syndrome, chronic migraines, chronic fatigue syndrome, and most painful conditions are viewed as exaggerating their symptoms of having psychological issues. Many in the rare disease community report doctors not believing them about their symptoms and it often takes many years to even get a diagnosis. 

Doctors need to remember that just because pain is invisible, or a symptom goes against what they learned in medical school doesn’t mean that it is “in their patients head, or that they or making it up.” The medical community needs acknowledge patients as the experts in their own bodies, be ok with admitting that they don’t know everything, and be willing to question what they think they know when it is not in line with their patients experiences.

Works sited:

1. https://www.entandaudiologynews.com/media/14524/entjf19-pollard.pdf

2. https://journals.lww.com/thehearingjournal/Pages/articleviewer.aspx?year=2019&issue=10000&article=00004&type=Fulltext

The landscapers came to my house today, for the second day in a row, so my mother and I had to leave and go to my grandmothers house again. The noise of lawn mowers, leaf blowers, weed wackers, and any type of power tool causes me intense throbbing pain on my forehead and the sides of my head. If we do not leave quickly my pain turns into a lingering migraine. I am thankful that my mother drives me away, and that my grandmother has an underground basement that I am able to go in at her house.

    Ever since elementary school, whenever there where any powers tools or construction being done on our neighborhood my mother and I would have to leave our house. Often we would go to my grandmother’s house, but sometimes if there was construction going on there too, or if for some other reason we were unable to go to her house, it created a major problem.  As I am unable to go to most public places due to the noise, or even most friends or family members’ houses, there were times when we would literally have to just sit in the car in another neighborhood all day. The times that we were unable to leave our house quickly enough, the pain from the power tools would then linger and turn into a full out migraine. When landscapers or construction was being done after I came home from school, which meant that I was already in a lot of pain, I would be unable to sleep in my closet. The pain would then become too much from both the power tools and school combined, and even if we drove away, I would often miss school the next day, as the pain would turn into a migraine.

    The landscape’s unpredictable schedule not only causes problems for me, but for my mother as well. If my mother has an appointment, and the landscapers come to our neighborhood, she often ends up missing her appointment. Also if mom was planning on running errands nearby or doing things around the house, she is unable to do so when the landscapers come, as she has to pack up my food, medicine, and drive me away. If my mom is not home and out running errands or already at an appointment, then I end up being in a lot of pain while I wait for her to come back home and drive me away. 

    Noise from landscaping and power tools is not only a big problem for me, but for many people with hyperacusis. I am lucky, as I have a mother who can drive me away and I have my grandma’s quiet underground basement that I can go to. Landscapers and construction workers should be required to notify the people in the surrounding neighborhood of their schedule, at least a week before they plan on coming. There also needs to be some sort of special quiet soundproof center in every state that the people with hyperacusis would be able to go to, to get away from loud noises, such as landscapers and construction.