As someone who has grown up most of my life with severe hyperacusis with pain, I know how difficult it can be to explain about your condition to new people and get them to provide the necessary accommodations and assistance. Unlike telling someone that you are blind, deaf, autistic, or use a wheelchair, if you say to someone that you have hyperacusis with pain they likely have no idea what that even means. The memories of how dismissive and inconsiderate people have been when we tried to tell them about our hyperacusis needs likely makes you wonder what the point is in even trying if they aren’t going to understand anyway. Although there are unfortunately many people who you can explain about your hyperacusis needs until you are blue in the face and they still won’t understand or care, I have found several methods and strategies that have helped people to understand about my hyperacusis needs and limitations.

Make electronic communication before meeting in person (when possible)

If you know you have an appointment or are going to be meeting someone new send them an email, social media message or text before hand explaining about your hyperacusis. You can make the subject something like medical needs and accommodations. I recommend starting out the email by stating that you have hyperacusis and then explaining what hyperacusis is. I usually say something like: I have severe hyperacusis with pain, a rare, debilitating, under researched and poorly understood medical condition that causes me to experience physical pain from everyday noises. Then I go on to list examples of sounds that cause me pain, the pain sensations and locations, and how hyperacusis prevents me from participating and doing daily life activities. This will help the person understand the severity of your hyperacusis and give them a general idea of your noise threshold, and hopefully make them more empathetic your accommodation requests. I might say something like: sounds such as people talking and laughing, dishes clanging, phones ringing, TV or music playing, refrigerators humming, water running, etc cause me severe stabbing and throbbing pain on my head and ears and lingering migraine attacks. Due to my hyperacusis I am unable to go to stores, restaurants, movies, social gatherings, take showers, cook, listen to music, use a microwave, or go on vacation. Finally after explaining what hyperacusis is, and how it affects you personally explain to the person what accommodations or assistance you will need from them to minimize your pain. This greatly varies depending on the severity of your hyperacusis and the types of interactions and situations you will be in with this person. Some common requests might include but are not limited to: being places in a separate waiting room in a quiet location, people speaking in quiet voices, turning off or muting all electronic devices, etc. 

Advocating in the Moment

We don’t have the opportunity to know in advance every person we are going to meet or predict every situation that we will encounter, to be able to pre-explain about our condition to them unfortunately. This is where a brief attention grabbing explanation of your current needs is important. Say for example that you are with a medical assistant or technician and another staff comes into the room and they start talking and laughing loudly. There are several options for handling in the moment situations like this. You can use body language cues such as putting your finger to your lips or waving your hands around to get their attention. Once you have there attention you can say something like: please lower your voices. I have a rare medical condition called hyperacusis where I get pain from everyday sounds, your speaking volume is physically painful for me. If the person or people seem to be listening and understanding you can take this opportunity to further explain to them about hyperacusis and what your noise needs are. Another good idea if these are people you will be interacting with frequently is to establish hand signal for when it’s too loud that you can use with them.

Have an advocate or representative

Anyone with severe pain hyperacusis knows that no matter how much we plan in advance and try to advocate for ourselves, there are often times when the physical pain, and additional symptoms make it impossible at that moment. Other times a place my have loud music on there waiting line or no way or other noise barriers that prevent you from being able to explain about you hyperacusis needs. This is where having a friend or family member who knows you well and understands about your hyperacusis, with you when you are going into new or unpredictable environments, can be extremely helpful. This person can do things like but not limited to: go into waiting rooms and ask them to get you a room in the back while you wait outside or in the car, ask people to quiet down when you are in too much pain to do so, help you navigate when the environment is noisy and you are confused due to severe pain, etc. If you have someone that you live with who understands you hyperacusis and helps you with daily life activities, they would be a good person to go with you to such places. If you unfortunately don’t have any friends or family who are understanding about your hyperacusis and willing to help, and you also struggle with daily life activities as a result of you hyperacusis, consider researching your state’s departments of human services, disability services, Medicaid, and developmental disability services to see about applying for a home aid or attendant care assistant.

Oftentimes the level of understanding, accommodatingness, and empathy of family and friends of a person with hyperacusis, can largely impact that amount of physical pain the person is in. This is because family members and friends are often shared in environments or frequently around this person, therefore impacting the noise the person is exposed to. Having hyperacusis in it of itself is already extremely difficult and at times miserable, but having your family doing things that cause you pain constantly and not believing you about your condition can just make the situation unbearable. Sometimes a person’s family are just mean or selfish people, but other times they truly love the person and want to help them, but are misguided as to how. I will assume that any family members and friends of a person with hyperacusis reading this fall into this second category. As a person who has lived with severe hyperacusis for most of my life, here are some things that you can do to help your loved one with hyperacusis.

Get To Know There Noise Tolerance and Needs

Hyperacusis varies in severity from mild to extreme, and the types of frequencies, and tember that are not painful for one person may be very painful for another. If the person is able to communicate, ask them to speak or write to give examples of noises that cause them pain and how they affect their body. Ask the person what you can do to modify the environment and/or your behavior to minimize their pain. In situations where the person is either non-verbal or unable to communicate at that time, pay close attention to their body language. Here are some examples of how a person may act if they are experiencing pain from the noises around them in their environment.

• If they are making a face when there is noise
• If they are tensing the body
• Do they make excuses not to do activities or participate in things that involve noise examples: they never go to parties, or movies 

• They are often absent from work or school after if the day before was noisy
• They where earplugs/ headphones in environments where most people would not
• They try to come up with reasons to leave when it gets noisy examples: allows having to use the bathroom when there videos being played, needed to suddenly leave conferences when people start talking loudly

• Covering their ears, crying, curling up (more often seen in children)
• Seems very quiet or withdrawn 
• Often seems irritable or moody when there is noise example: when the phones have been ringing a lot at work, or there is construction on the neighborhood 

• Pauses in there sentences whenever there is sound 
• Is easily distracted by sound 
• Has a hard time understanding speech when more than one person is talking at once

Accomadate and Meet There Noise Needs

Hopefully through written, verbal, and nonverbal communication you now have a good understanding of what volumes and frequencies cause the person pain. The next step is to modify the environment and your interactions with them in an attempt to eliminate or greatly reduce exposure to painful noises. If the person is coming over to your house; make sure that any other people in the house are aware, able, and willing to meet that person’s noise needs. This can mean anything from turning off the TV, radio, music, putting all phones on silent, not washing dishes, turning off the washer and dryer, etc. If there hyperacusis is extremely severe it may even mean letting them go in a room in your house far away from the road, or even someplace with no windows or vents such as a closet, attac, or basement. If even with these accommodations your house is still too loud for that person, make sure to speak softly, silence your phone, and not to ring the doorbell when you go over to their house. When considering going out somewhere with this person, go to this place yourself and just stand or sit there and be mindful of the sounds that you hear, before even asking the person if this is an activity that they think they would be able to do. Another part of meeting the person’s noise needs is not only making sure that you are accommodating them, but also being their advocate with other people as well. This can range from explaining about their condition and asking people to quiet down, or advocating for accommodations for them when they are unable to do so; such as being placed in a separate waiting area. 

Be Empathetic and Don’t force, encourage, promote sound exposure

In addition to getting to know and meet the persons noise needs to help reduce there pain, it is also important that you don’t make insensitive, though sometimes well meaning comments. First when the person tells you that they are in pain, the noise level or specific noise is painful, remember that you are not in there body. It is very insensitive and emotionally hurtful to person with hyperacausis when you make comments like: its not that loud, your not in that much pain, that sound doesn’t cause you pain, your fine, this is phycological, this is an anxiety problems, I don’t believe that that causes you pain, or anything else to dismiss or discredit what the person is saying about what is happening with there body from the noise. Instead let them know that you believe them about there pain and maybe say something to let the person know that you have empathy for them for example, I can’t imagine what it must be like to get severe pain from everyday noises and have people not even believe me. When you ask or invite your loved one with hyperacusis to do something and they say that they can’t because the noise will be painful for them, don’t try to convince them to go. Instead let them know that you completely understand and care about them so wouldn’t want them to do anything that would cause them pain. Families and friends are also often misguided by doctors that the best treatment for hyperacusis is gradual exposure and to avoid overprotection. Family and friends of a person with hyperacusis need to know several things about this “treatment approach”: there are zero studies of viable size done on patients with pain hyperacusis that demonstrated desentization as an effective treatment, scientist currently do not yet have a working model of the normal human auditory system, although there are people who have improved through desensitization there are also many whose hyperacusis has temporarily or permanently worsened from it, the science behind hyperacusis is just at the emerging edge of research. Keeping all of these things in mind, please do not try to to encourage your loved one to gradually participate in activities involving noise, do sound therapy, or anything else that involves noise that causes them pain.

When the few people who even know what hyperacusis with pain is, they still usually only think of the classical symptoms of noise induced ear pain. Although many people with pain hyperacusis do experience ear pain from sound, not all of them do, and some of the ones that do also experience additional symptoms. These symptoms can range from tinnitus, noise induced migraines/facial pain, vertigo, seizures, confusion, inability to understand speech when other noises are present, and a sensory impairment involving another sense. I personally experience the majority of my pain from sound on my forehead and temples, although I do get ear pain as well. I have random seizures, but also ones triggered by noise. In addition I have sensory processing disorder (sensitive to clothing, shoes, etc), am visually impaired, and cannot understand what someone is saying and get confused when there are multiple people talking or background noise.

As someone who is a part of several support groups for people with pain hyperacusis, and has virtually met many other people with hyperacusis through my online advocacy, I have seen debilitating and overlooked these hyperacusis symptoms by the medical community. Using my own personal experience, and what other suffers have reported, I have attempted to summarize some of the more overlooked symptoms of hyperacusis.

Tinnitus:

This is the most common associated condition with hyperacusis, and the only one that the medical community accepts a possible relationship with hyperacusis. Thankfully, I personally do not suffer from tinnitus, but I know many in the hyperacusis community who do. From what people have told me about there experiences with it, tinnitus is a constant ringing in the ears. Often a person with hyperacusis will experience a worsening of there tinnitus as when exposed to noise above there tolerance level. A person can have several different tinnitus tones and sounds at the same time. Just like hyperacusis, tinnitus can range from mild to debilitating, with some people even having very sharp tinnitus.

Noise induced Migraines/facial pain:

As I mentioned earlier I personally experience pain on my temples, forehead, and the sides of my head from noise, and get migraines from noise. From what I have read in different hyperacusis groups, and from my virtual encounters with those with pain hyperacusis, migraines or other facial pain triggered by noise is actually quite common. The noise doesn’t have to be loud to trigger a migraines, in fact it can be something that other people barely even hear like a refrigerator humming or a fork hitting a plate. Just as with ear pain, the migraines or facial pain will often last long after the noise. I have some level of a migraine (pain on my temples, forehead, and sides of my head) everyday, either immediately triggered or lingering from noises above my sound tolerance threshold that I am exposed to, even if for only a few minutes of seconds each day. 

Noise induced Seizures/other neurological symptoms:

In some patients with hyperacusis they experience seizures when exposed to either noises above their threshold or very loud noises. Thankfully I do not experience a seizure every time I am in pain from noise, however expose to either extreme or prolonged noise does cause me to have a seizure. Often when people think of seizures they think of a person laying on the ground convulsing, although I’m sure there are people with hyperacusis who this happens to, from reading people describe their symptoms it seems more common for people to have absent, myoclonic, or focal seizures. In an absent seizures, a person simply loses consciousness for about 2-10 sec, but there is no body movement. Myoclonic seizures are when a person’s arms jerk or shake uncontrollably, often appearing like they have been startled. There are several types of focal seizures, focal aware seizures, and focal impaired awareness. The symptoms from a focal seizure are quite diverse, and may explain some other strange symptoms people with hyperacusis experience from sound exposure. Symptoms of focal seizures include but are not limited to: muscle contractions, followed by relaxation contractions on just one side of your body unusual head or eye movements numbness, tingling, or a feeling that something is crawling on your skin abdominal pain rapid heart rate or pulse automatisms (repetitive movements), such as picking at clothes or skin, staring, lip smacking, and chewing or swallowing sweating nausea flushed face dilated pupils, vision changes, or hallucinations mood changes blackouts. In addition to noise induced seizures some patients with hyperacusis may experience pain throughout their entire body, or in different body parts. I even know people who experience temporary paralysis from prolonged periods of sound exposure. 

Noise Induced vertigo/dizziness: 

For some people exposure to noise above their tolerance threshold or specific frequencies can cause them to become dizzy and even lose their balance. People can experience this along with pain or other symptoms. When a person mainly experiences noise induced dizzy/vertigo this and maybe noise induced seizures, this is called vestibular hyperacusis. Just as with noise induced pain or other symptoms, vestibular hyperacusis can range from mild to severe. Some people only feel dizzy or like they are spinning from louder noises, for others even quiet sounds can cause them to completely lose their balance and fall over.

Other Sensory Impairment

Sensory impairments are any impairment that affects the senses: hearing, sight, smell, touch, and taste. Examples of sensory impairments include but are not limited to: vision loss/blindness, visual snow, photo-sensitivity, hearing loss, auditory processing disorder, allodynia, multiple chemical sensitivity, sensory processing disorder, autism, etc. By definition hyperacusis would definitely be considered a sensory impairment. From reading about other people’s hyperacusis experiences and symptoms, it seems quite a few people who have hyperacusis also have an additional sensory impairment. Reporting difficulty understanding speech, which is one of the main symptoms of auditory processing disorder, is a common complaint from those I know virtually with hyperacusis. Hearing loss is also sometimes associated with hyperacusis, in such cases it is sometimes called recruitment by the medical community. Some people with hyperacusis also report visual snow, light/color sensitivity, visually processing difficulty, or even vision loss. In some hyperacusis patients they may also have sensory processing disorder, sensitivity or even pain from a broad variety of sensory stimuli such as clothing, shoes, or different textures. Severe tactile sensitivity with pain is called allodynia. In addition some people with hyperacusis experience pain or illness when exposed to everyday smells, which is called multiple chemical sensitivity. Finally some people with pain hyperacusis are on the autism spectrum, or may have a combination of more than three of the above listed sensory impairments. As I mentioned earlier, I am personally legally blind, and have sensory processing disorder in addition to my hyperacusis. 

Hyperacusis Research has currently found two possible sources for pain hyperacusis, type II nerve cells in the cochlear, and the middle ear, which triggers the trigeminal nerve and would explain the migraines and facial pain some patients experience. After speaking with research scientist Paul Fuchs, and Fan-gang Zheng, I think that there are at least three types of pain/physical symptoms, hyperacusis. The above two types currently listed, and a type of hyperacusis involving the brain centers, which is one of research Fan-gang Zeng’s theory behind hyperacusis. As he told me, “once the auditory signal is in the brain, it can literally go to any of the other brain centers from there.” If this is one patient cause of hyperacusis, it could potentially explain symptoms like seizures, tinnitus, vertigo, and additional sensory impairments. More research needs to be done to better understand these lesser known symptoms of hyperacusis. Who knows maybe some forms of hyperacusis is actually some sort of complex neurological disorder. 

I wanted to talk about the connection hyperacusis pain suicide/suicidal thoughts. The severe chronic pain that people with hyperacusis experience is almost impossible to escape from, as it is triggered by normal everyday noises.

High levels of constant chronic pain over an extended period of time, by themselves can cause people to feel suicidal. In addition to the pain those with hyperacusis are misunderstood and not believed about their pain by the medical community and often treated with desentization and behavioral therapy.

The poor understanding and lack of research about pain hyperacusis from the medical community means that a person’s friends/family/community often treat them like their pain is “all in the head”, and try to encourage sound exposure.

The combination of severe chronic noise induced pain, and not being understood or believed my the medical field or there communities, can often lead to people with severe hyperacusis feeling/attempting suicide/suicidal thoughts. 

Unfortunately when those with severe pain hyperacusis are suicidal, medical professionals and their community further believe that hyperacusis itself is an emotional problem.

This means that the person is further encouraged or even subjected to desentization and behavioral therapy, causing increased pain and long term worsening of their hyperacusis. It is a terrible cycle that many people with hyperacusis are helplessly caught in with: of severe noise induced pain, people not believing them and thinking its “in their heads, being treated with desentization and behavioral therapy, and feeling suicidal.

To make things even worse, if a medical or mental health professional thinks a person is “a danger to themselves” they have them hospitalized. Don’t get me wrong, something definitely needs to be done to keep the person safe, but sending a person with severe pain hyperacusis for inpatient physiatric care will result in there physical and mental health becoming drastically worse.

This is because physiatric hospitals are extremely loud places, and the staff there will treat there hyperacusis like a physiological conditon and not make any noise accommodations, leading to unbearable physical pain, long term worsening of there hyperacusis, and ultimately them feeling/attempting more suicide/suicidal. 

I know this from personal experience. I was suicidal from age 11-14 due to being in such severe constant pain from noise, and people not treating my pain like a physiological condition and forcing sound exposure on me.

When I was 11 years old, I had had hyperacusis with pain for about 5 years at the time, I attempted suicide to try to prevent being in more pain, (my doctors and parents had been planning and talking about doing gradual exposure and behavioral therapy involving sound I had had very painful experiences with this in the past, and I thought I would rather die then go through that again) I ended up at a psychiatric hospital, and non of the doctors believed me about my Hyperacusis.

They did not Believe that I got physical pain from Sound, and they thought that it was purely a behavioral problem and that I was just being manipulative. 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 altering 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 for quiet and rest. 

One of the sad things that I have learned as I become an advocate for hyperacusis, is that suicide and suicidal feelings among those with severe pain hyperacusis are not uncommon. Often just like with my case, these patients are only further harmed by the suicide intervention/mental health help, because they only further the two main reasons the person likely felt suicidal in the first place, physical pain and disbelief.

The way to intervene and help a person with severe pain hyperacusis that feels suicidal is to provide them with a pain free environment to meet there specific noise tolerance, help them get the daily life modifications/services they need to avoid noise, acknowledge that they are the expert in their body, and believe and be empathetic when they tell you about there pain/symptoms. 

    If you or someone you know has severe hyperacusis, then you are probably aware of how debilitating of a condition it is. So many activities of daily living involve noise. Cooking, washing clothes, using the microwave, using transportation, even taking a shower or bath. A person with severe hyperacusis may be unable to perform these basic tasks of everyday living, due to the intense physical pain and debilating symptoms caused from the noise of these activities.

This creates a major problem, especially for those with severe hyperacusis who either live alone or live with family or people who do not understand their hyperacusis, thus these people have no one to help them. Last week we talked about basic daily living modifications that can help people with moderate to severe hyperacusis. If you need more high level environmental modifications or different types of assistive technology, which you likely don’t have the means of affording. 

What most people with hyperacusis don’t realize however, is that they may be eligible to receive different types of disability services. I don’t just mean disability benefits like SSDI, but also help covering the cost of home modifications such as soundproofing or smart technology as well as in-home aides and assistants. Think about it, someone who has a condition such as paralysis, severe autism, blindness, deafness, cognitive disability, or is medically fragile is eligible to receive these types of services. Just because hyperacusis is rare, invisible and poorly understood, if it prevents you from being able to perform basic life activities you may be eligible for a variety of different disability supports and services.

Please note that all of the services and agencies that I mention in this article is only applicable for those living in the United States. If you live in another country try researching things like “home modifications assistance for people with disabilities,” “assistive technology coverage assistance for people with disabilities,” or “free at home aid/assistant for people with disabilities.” 

For those who need help with paying for soundproofing, smart technology or quiet appliances there are several agencies who may be able to help. One option is your state department of rehabilitation services, every state has one of these. If you register with your state’s department of rehabilitation services they can cover the costs of home modifications (such as soundproofing) and assistive technology (like smart distance control devices). Every state is somewhat different, but you will likely go through a disability determination process and then be provided with a counselor who will work with you to determine what types of modifications or technology will be helpful for you.

Another option for people who developed severe hyperacusis before the age of 21, is to apply to receive services through your state’s developmental disability administration. Developmental disability administrations can provide a broad range of support specific to your individual needs including helping you cover home medications, assistive technology, and provide an in-home aide or assistant. There are three other national government agencies that you can contact and apply to receive services from. Your state’s office of disability services, the department of human services, and your state’s department of aging and disability services. Here are some links to the resources that I mentioned in this article. 

Locate your state department of rehabilitation services: https://rsa.ed.gov/about/programs

Locate your state developmental disabilities administration: https://www.nasddds.org/state-agencies/

Locate your state department of disability services: 

https://www.ncdhhs.gov/assistance/disability-services.

Locate your states aging and disability resource center: https://www.dhs.wisconsin.gov/adrc/consumer/index.htm 

People who don’t have hyperacusis don’t realize how many things in their daily lives have noise. From waking up to an alarm clock, to flushing the toilet, to running water, to using the microwave almost everything makes noise. For some people with severe hyperacusis, several if not all those things cause them pain. I have seen the topic of the problem with the noise involved with activities of daily living, come up many times in hyperacusis online groups. I have also spoken with various other people with severe hyperacusis who struggle with these things. Having basically grown up with severe hyperacusis, there are unfortunately many daily life activities that I am not able to do, and others I have had to greatly modify to make them quiet.

First let’s talk about ways of finding and creating a quiet place at your home. This is so important because no matter how much you modify activities, if you’re in the environment you are in is painfully loud for you. Depending on where you live: city, suburbs, country. How many people you live with, and whether you have neighbors above and below you can make a big difference in how you go about making or finding a quiet place.

Wherever you live though there are some basic things you can do to try to create a quiet place for yourself. You can purchase acoustic panels, soundproof foam, door sweeps, green glue all on Amazon. Understandably you likely can’t afford to soundproof your whole home, so I recommend soundproofing a closed in room because that will be easiest. If you cannot afford to fully soundproof a room, try soundproofing a closet, large tent, or other small enclosed space.

Your other option is to soundproof the main sources that act as medians for noise to travel through. This usually includes windows, walls, and doors. Try to figure out what most of the noise is getting into the room from and soundproof those sources. In my bedroom, the entire outside facing wall has been soundproofed and I have a closet inside my bedroom with no window or vents that I go into when I need extra quiet.

In terms of ideas for modifications of daily living, I will tell you some of the things that I have found work for me personally. In terms of the bathroom there are several things that I do that are different from most people. When I flush the toilet I cover my ears and run out of the bathroom, it still hurts though so if anyone else has found a better solution please let me know.

The sink water running causes me pain, so to wash my face I use facial cleansing wipes and micellar cleansing water. I have a special quiet fan that I use in my room, because the noise of most fans causes me pain. I eat all of my food on paper plates with plastic silverware, as the porcelain hitting the metal is like being stabbed. I have used craft foam as well as felt mats to put in the bottom of my drawers that have my school supplies, because scraping against the hard surfaces is painful for me. My phone is set to flash instead of ring.

I use the google voice app to make most of my phone calls, because it allows me to mute the noise coming from the other person’s end. If you have any topics that you would like to see me cover in terms of hyperacusis, send me an email: hyperacusis.awareness@gmail.com. I hope that you find some of these ideas helpful in making your life more quiet and less painful. 

If you have read any of my previous posts you are likely aware of the painful and horrible experiences that I have had with doctors growing up. For those of you who have not read my previous blog posts, ever since I was little doctors treated my hyperacusis like a psychosomatic condition.

It took a 2 ½ for me to even get the diagnosis of hyperacusis, which offered me no protection from painful sound exposure treatments being forced upon me. For me noise feels like I am being stabbed in the temples and ear or beaten in the forehead and the sides of my head and I get horrible lingering migraines afterwards. Unfortunately the doctors and clinicians who should have supported and helped me manage my pain subjected me to everything from: play/fun activities to expose me to noise, to behavioral modification plans that were designed to have me participate in normal life activities that involved noise, therapy that assumed that my pain was phycological, and a 2 week hospitalization on a psychiatric ward with zero accommodations. The only thing these treatments achieved was causing my physical pain level to increase significantly and leading to me feeling miserable and in middle school even suicidal from the pain. I had to learn to fight for myself and do my own research from a very young age

My experiences are not unique, the majority of people with pain hyperacusis face clinicians who do not understand the physical pain, or noise related setbacks caused by this condition. This unfortunately results in patients frequently being harmed, put in severe pain, or experiencing permanent setbacks as a result. In the medical world doctors have certain conditions like: cancer, scoliosis, autism, blindness, deafness, cerebral palsy, flu, cold, etc hat they have heard of, know the symptoms to look for to make a diagnosis, and an established universal treatment or management protocol (that doesn’t harm or worsen patients.

It would have been so helpful for me and many other patients if there were such guidelines for clinicians to follow when evaluating symptoms, making diagnosis, and recommending or administering treatment or management options. I have decided that I am going to work to establish such guidelines.

How am I planning on doing this you ask? I am in contact with a staffer from the American Academy of Audiology who is going to connect me with their guidelines and strategic committee. Once in contact with them I plan to assemble a team made up of hyperacusis research scientists: Paul Fuchs, Fan-Gang Zeng, and Richard Salvi, as well as President Bryan Pollard from hyperacusis research to draft and submit clinical excellence guidelines for them to approve.

Due to the nature of hyperacusis, many patients are likely to also have interaction with: general physicians, neurologists, phycologists, ear, nose, and throat doctors, pediatricians, and occupational therapists. All of these clinicians will also need to be aware of and adhere to these guidelines when handling patients who report noise induced pain. In order to make sure this happens, after the guidelines are approved by the American Academy of Audiology, I would submit them for approval to the following Americain academies: family physicians, pediatrics, neurology, phycology, otolaryngology, and occupational therapy. I plan to draft and establish very thorough guidelines that would cover everything from: evaluation of symptoms, dignosises, noise/pain management, noise, setback prevention, mental health issues, children and adolescents, and much more. My hope in working to establish these guidelines is that I will protect other people with hyperacusis, especially kids, from having to go through the pain that I did. 

Second to experiencing severe chronic pain from everyday noises, the next worst part to living with hyperacusis is having people treat it like it is a psychosomatic condition. 

In elementary And middle school, in addition to desentization, I was constantly receiving counseling and behavioral therapy. I worked with countless mental health professionals who thought that the problem was my anxiety and my thoughts about noise. One of the things that made me very upset was when people would purposefully avoid using the word “pain” and would instead use terms such as bother, dislike, discomfort, upsetting, stressful, etc.” Let me tell you, as a little girl sitting there with her head pounding and ears stabbing from the noises around her at that moment, being told that I was “bothered or upset” by noise was extremely insulting.

At school I have always been placed in programs for students with emotional disabilities, who often had outward acting behaviors. For the past decade I have been trying to get people to understand that my hyperacusis is a physical condition, not just a somatoform.  

About a year and a half ago, new research finally started to come out to support physical mechanisms for hyperacusis with pain. Hyperacusis research scientist Paul Fuchs recently discovered Type II pain neurons in the cochlear, when the scientists previously assumed that the ear did not have pain fibers.

There have also been several other recent discoveries including how the middle ear is capable of triggering the trigeminal nerve, and how an auditory signal could potentially be processed by the pain centers of the brain.

Now at 16 I am able to find several articles in medical journals about hypothetical mechanisms for pain hyperacusis, and am in contact with several of the research scientists. 

The reasons that people who report physical pain from noise are treated and assumed to be having a psychosomatic condition is because of the lack of research to definitively understand the neurophysiology of hyperacusis, and the lack of communication of recent research to clinicians.

Another reason that patients reporting noise induced pain are likely treated and assumed to be having a mental illness is because the combination of being in chronic pain from everyday noises in their environment and having people not believe, not accommodate, force them to be in physically painful situations, and have there pain dismissed would cause most people, especially a kid, to experience emotional distress. It’s like beating someone in the head with a baseball ball repeatedly and unexpectedly while telling them that the pain is from their thoughts about the situation, and then using their crying, tense body, and avoidance of you as evidence that they have a psychological problem. 

One of the challenging things about having hyperacusis is the fact that it is so rare and hard to find other people like yourself. Up until I was almost 14, I didn’t really have very many friends or mentors that had severe hyperacusis, that I could relate with and talk to. I didn’t even know anyone who had anytime of chronic pain and environmental illness until I was 9. I had a vision teacher who had chronic pain made worse by smells, and she has become like a fairy Godmother to me. When I was 12 I also got to meet a young woman in Delaware who had never been formally diagnosed with hyperacusis, but experienced physical from noise. Apart from these two people I felt like an alien because I was always the only one with hyperacusis. I had to learn and figure out how to do research, do things quietly, advocate with doctors, and much more mostly on my own. I have seen through my experience as a blind person and being a part of the National Federation of the Blind, how important it is to have friends, mentors, and a community with your same condition. I remember wishing that I had the same thing for my hyperacusis.

When I joined Hyperacusis Research and Support group on Facebook in the Eighth grade, for the first time I felt like I had a community of other people with hyperacusis who could understand and relate to my experiences. Although I have been fortunate enough to have loving and caring friends and family in my life who tried to understand, they could not relate to being in constant pain from everyday noises, not being believed by doctors, and they daily struggle to avoid noise. There are many things that only people living with hyperacusis or at least some sort of rare, painful, environmental illness can relate to. Connecting with other people with hyperacusis can help those who are struggling, kids, or new to hyperacusis to get ideas, guidance, information, and resources from those who have had to deal with similar problems. 

One of the reasons I started the Hyperacusis Awareness movement is so that I could help connect and reach out to those with hyperacusis to provide information, support, ideas and guidance for navigating life with hyperacusis. I created the Patient Education and support program which matches up those who are new to or struggling living with hyperacusis, with more experiences hyperacusis suffers, including myself, to get empathy and advice. I have also started a secret group on facebook for teens with hyperacusis to be able to make friends with their same condition. My long term goal is to eventually establish a hyperacusis resources and support center. This center would have people who could help connect people with and guide them through the process of getting noise related home modifications, disability, and at home services. It would help patients connect with researchers and find doctors who are up to date on the latest science on pain hyperacusis. The center would have some soundproof apartments that people could stay in temporarily, a special hyperacusis school program and college program.

Having had severe hyperacusis with pain for most of my life, I know from personal experience that before the pandemic it was basically impossible to get most places to give me the types of accommodations that I needed. For me everyday noises like people talking and laughing, telephone ringing, dishes clanking, Music or TV, lawnmowers, running water, refrigerators, etc cause me physical pain and lingering migraines. This meant that I was unable to attend stores, restaurants, social events, movies, conferences, extra curricular activities, and most public places. Unfortunately many people with moderate to severe pain Hyperacusis, are unable to attend work, most public places, school, or social events due to the noise level.

29.9 million Americans live with some sort of high impact chronic pain condition. Between 25-30 million Americans live with a rare disease. Some of these conditions prevent people from being unable to participate in daily life activities such as: social gatherings, household chores, stores/restaurants, work/school, etc due to their pain level and/or the sensory and environmental factors such as but not limited to: sound, light, smell, dust, germs, etc.

Although the ADA does guarantee reasonable accommodations to those with a disability, unfortunately some of the accommodations needed by those with hyperacusis, high impact chronic pain conditions, rare sensory conditions, or rare allergies can easily be justified as unreasonable. This means that these conditions are often unable to participate in many activities, work, school, etc. or must endure intense increased levels of pain, or exacerbate their health in order to do so.

COVID-19 has proven that the world is capable of offering: virtual events, telework, telehealth, distance learning, provided separate alternative locations, and having only a very small number of people at an activity or facility. This has enabled me to be able to participate in so many things now, because I can do them from inside my soundproof bedroom or closet with volume control and a mute and end buttons. There is absolutely no reason why after COVID-19 the world cannot continue to offer virtual access, private separate locations/times, and major limits on the amount of people, as accommodations to those with hyperacusis and other types or high impact chronic pain conditions, rare sensory conditions, or rare allergies. Unfortunately, we cannot simply trust that after this pandemic such things will continue to be provided, once they are no longer needed by the majority. That is why I am working to try to get a Title 6: Telepresence and High Level Sensory Modifications, added to the ADA.

This addition to the ADA would Require that all services, facilities, activities either provide a person who has a condition who would otherwise be in pain, ill, or unable to participate due to the sensory and other environmental factors with either an accessible virtual option, modify the sensory or other environmental factors to meet their needs, or provide them with a separate specialized environment to meet their needs. I have had two meetings with Senator Chris Van Halen‘s office in which I asked that he introduce my proposal to congress,and I I plan to follow up with his office in a few weeks. Later this month I also have meetings with Senator Ben Cardin, and representative Kwiesi Mfume to ask them to introduce and sponsor my proposal to Congress as well. If you want to help fight for Title 6: Telepresence and High Level Sensory Modifications, added to the ADA, call, email, and send letters to your national representatives and senators asking them to introduce, sponsor, and support this legislation.