“Picture yourself in a movie theater. It’s dark as you take your seat. The show is about to begin. You start to enjoy your popcorn as the trailers start. They are loud but they always are, you know this. Is it your imagination or are they louder this time? You focus more on your popcorn, everything will be fine when the movie starts. The film starts to play, you’re so excited, you’ve been waiting for this one! But wait, something’s wrong, everything is not fine. The volume is way too loud. The actors sound like they are screaming and the music seems like it’s crushing down on you. A door closes on screen and the sound effect has you jumping spilling your popcorn. A car tire squeals and you look to see if its right beside you…are you going to get hit? But no, the car is safe on screen and you’re still in your seat.

You try to take a deep breath but all the sound, no! All the noise is deafening. Your ears are ringing now, you need to get out of here! This noise must stop! Who turned the volume up so loud? How could this mistake have been made? It’s so loud your stomach is feeling sick. You try to stand but a wave of dizziness knocks you back into your seat. You cry out in pain but no one responds. As you try to focus on the theatre audience, you realize you are alone. No one else hears how loud this film is…it is just you!

No one sees what is happening to you, what is happening in your head, the throbbing and pounding. The pressure keeps building, your head feels like is going to explode! You’re so tired if only you could sleep but it’s so loud and the ringing in your ears…it won’t stop! Your vision starts to blur, the pain in your head is too great. You try standing again but its no use.

You cry out loud but no one can hear you, even if they did, you’re not sure the words escaped your lips. You can’t think strait. Everything is too much, too loud, too painful and you are trapped. All you can do is wait till the movie ends. Because for you its just a bad movie experience. The worst of your life. You’ll complain and get free tickets and apologies. But not me. For me the movie never ends. For me every sound of every second of every day is too much, too loud, too painful and I’m trapped. Someone has left the volume control of everyday life, turned up to maximum. This is life with Hyperacusis, Tinnitus and migraines…this is my life.

Writer by Rosemarie Neumayer

Check out some of Rosemarie’s crafts, drawings, and stuffed animals on her website: http://www.rosemarieneumayer.com

This past Wednesday May 20th 2020, I turned 16 years old. My 16th birthday has been the best birthday that I have had in a long time, for the first time in many years my pain level was very low on my birthday. Since my 10th birthday, despite putting on a happy face, having small quiet celebrations, and getting lots of gifts, birthday were an upsetting point for me. The thing that I wanted most was to just not be in pain my birthday, and I finally got my wish (for the most part).

It’s hard for me to Believe that I am actually 16 years old now. Looking back, I thought about how ironic it is that the things that people used to tell me I was wrong about, are now the same things that people compliment me on fighting for. I think back about the little elementary and middle school girl, who was in pain and not believed, the girl who wished she had someone who understood what it felt like to get pain from sound. I realize that I am now that person, that my younger self wanted and needed.

I am so thankful to God, for bringing me this far in life, and for giving me the will power and intelligence that I need to fight for myself and others. I am so grateful, that the research is starting to come out to support what I have been saying this whole time, and to be able connect with other people with similar situations.

I am now a R.A.R.E. (rare advocates representing everyone) advocate, a member of YARR (young adult rare representatives) part of the EveryLife Foundation, and a WeGo Health advocate.

Introduction:

Hyperacusis is a poorly understood rare auditory disorder. Until extremely recently hyperacusis was thought to be a psychosomatic condition, however, new research findings are uncovering that hyperacusis is actually an otological and neurological condition. Unfortunately, hyperacusis currently has no cure.

Currently most doctors treat hyperacusis using some combination of TRT, desensitization, cognitive-behavioral therapy, and counseling. Unfortunately, these treatments are not always affective in hyperacusis patients and in some cases have made their condition worse. Hyperacusis Research Is a nonprofit organization dedicated to ending noise induced pain. “Hyperacusis Research is committed to finding a cure for patients whose conditions have not significantly improved by current treatment options.”

Mechanisms:

Hyperacusis mechanisms are currently not well understood. Doctors and scientists do not yet a functional model of the auditory system. Currently, the suspected theoretical mechanisms for hyperacusis are as follows.

•1. Eighth auditory nerve

2. Auditory pain fiber nerve cells

3. Auditory cortex

4. Somatosensory cortex

5. Staples’ bone

6. Hair cells in cochlear

Doctors and scientists are still doing more research into the possible mechanisms of hyperacusis.

Hyperacusis setbacks:

Hyperacusis setbacks are currently a seriously overlooked aspect of hyperacusis. As mentioned in the above section the current treatment options have worsened some patient’s hyperacusis due to the exposure aspect of these therapies. Many patients also report experiencing setbacks from normal daily activities or environmental sounds.

A hyperacusis setback is when a patients pain level is elevated, and their tolerance decreased following exposure to sounds above their tolerance threshold. More research needs to be done to help doctors and patients better understand how they can prevent setbacks. Noise levels do not have to be extreme or even above average in order to produce a setback for a person with hyperacusis.

In a survey conducted “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.” In the hyperacusis, Sanford Cords study also demonstrates that setbacks are more prominent in hyperacusis patients then previously suspected, see the data below.



62% answered ‘every day’ or ‘continuously’ (see Figure 2). Of these, 75% indicated the pain was a direct result of being around a new loud noise. Most sufferers feel the pain immediately. When asked, ‘how long does the pain last?’, respondents indicated the following: 22% – five to 24 hours; 22% – several days; and 11% – several weeks or months.

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.

“ 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.”

Although many doctors are concerned that over protection will worsen patient’s hyperacusis condition, it seems that patients are more likely to suffer from setbacks due to exposure.

A New direction in Research:

Many patients with hyperacusis have to isolate themselves in quiet in environments. Many hyperacusis patients are unable to attend malls, restaurants, or other social activities. Patients with severe hyperacusis even have a hard time doing normal household activities.

Hyperacusis Research is not only researching a cure for hyperacusis, but is also looking into management options until a cure can be found. Hyperacusis Research has a section called “quiet your world.” Hyperacusis Research has several articles on: quiet products, suggested noise reduction strategies, and hearing protection.

The importance of sound avoidance and noise management is reinforced by the above section (hyperacusis setbacks). New treatments are also being invented to help hyperacusis patients. Hyperacusis Research just received a grant from the NIH to develop a hyperacusis device.

The hyperacusis device was developed by Dr. Craig Formby and Dr. David Eddins in collaboration with Bryan Pollard the President of Hyperacusis Research. The new hyperacusis device allows the patients complete control over the sound level that they hear. “For example, the sound level to dampen loud sounds will be customized to a patient’s Loudness Discomfort Levels.” A clinical trial is currently underway to evaluate the effectiveness of this device.

Dr. Herbert Silverstein has also recently invented a surgery for hyperacusis called Round and Oval Window Reinforcement Surgery. The surgery is designed to reinforce the round and oval window with skin tissue, this in turn reduces the sound vibrations in the ear, making sounds less painfully loud for patients.

A study was conducted on adult patients with severe hyperacusis to evaluate the effectiveness of this surgery. The surgery had a positive impact on many of the subject’s hyperacusis severity. “The results suggest that reinforcement of the round and oval window with temporalis fascia or tragal perichondrium may offer a significant benefit for individuals with severe hyperacusis that has not responded to traditional therapy.

ULL scores and self-report measures postoperatively demonstrate improved noise tolerance, high patient satisfaction, and enhanced quality of life.” Not everyone agrees with the direction of this new research. Not everyone in the medical community favors the procedure.

Dan Malcore, the publisher of the Hyperacusis Network, called the procedure “a Band-aid approach” and said that it did not address “the path to recovering decreased sound tolerance by re-establishing one’s tolerance to sound.”

Instead, Malcore pointed to tinnitus retraining therapy as proper protocol and treatment for hyperacusis. Almost half of the patients with hyperacusis also have tinnitus, the perception of ringing in your ears. Silverstein disagrees.

“Most new developments are met with a negative response at first,” said Silverstein. “Change is difficult, and it isn’t until there are years of proven reliance that the medical community turns around.”

The same statement can be made about the new approach in setback prevention, pain reduction, and the new hyperacusis device.

Hyperacusis and the ADA:

Due to its previous categorization as a psychosomatic condition until recently, hyperacusis was not recognized under the ADA. Bryan Pollard the president of Hyperacusis Research in collaboration with other people has worked very hard to change this. There is now a small section in the ADA called “ Disability rights aspects of ambient noise for people

with auditory disorders under the Americans withDisabilities Act,” this section mentions hyperacusis by name.

“ HYPERACUSIS AFFECTS 19 MILLION (5.9%) AMERICAN ADULTS.

Hyperacusis, discomfort from sounds that would ordinarily be acceptable to most normally hearing people, is not well understood.” The ADA also acknowledges that current treatment options are not very affective in treatment in hyperacusis. Hyperacusis treatment includes sound therapy and counseling, such as cognitive-behavioral therapy. “These treatments rarely work. Even mild hyperacusis can cause major life disruption.”

According to the ADA the definition of a disability is “defined in the Americans with Disabilities Act (ADA); a disability is a physical or mental impairment that substantially limits one or more major life activities.”

Hyperacusis Research also partnered with quiet collaboration an organization dedicated to reducing environmental noise levels. The new recognition of Hyperacusis under the ADA is a major step forward for Hyperacusis patients in receiving necessary accommodations.

“Furthermore, the ADA standard is that “no individual shall be discriminated against based on disability in the full and equal enjoyment [emphasis added] of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation.”

Some doctors have written letters for their hyperacusis patients that entitled them to receive accommodations in the workplace or in other aspects of life. Some patients with hyperacusis have also been able to win their case in court for disability and or other accommodations. Although there are noise laws and guidelines, they generally only apply to dangerous levels of noise.

Hyperacusis patients, however, experience pain from sound at levels much lower than are capable of causing hearing loss. Although hyperacusis has now been recognized under the ADA, there are currently no specific accommodations.

The hyperacusis accommodations implemented usually depends upon the person. There are also general disability accommodations that many people with hyperacusis use these include but are not limited to: grocery delivery, disability, an adapted work environment such as working from home, help doing noisy tasks, smaller adapted classes in college, etc.

Sources:

1. Auditory Pain Pathway May Protect Against Hearing Loss

2.Auditory Nociception and Pain Hyperacusis Symposium – Hyperacusis Research

3. https://asa.scitation.org/doi/pdf/10.1121/2.0000657

4. http://www.icben.org/2017/ICBEN%202017%20Papers/SubjectArea02_Fink_0206_2332.pdf

5. Unravelling the mystery of hyperacusis with pain

6. Sarasota doctor develops treatment for hyperacusis

7. Clinical Advancements for Managing Hyperacusis with Pain : The Hearing Journal

8. Minimally Invasive Surgery for the Treatment of Hyperacusis. – PubMed – NCBI

9. Hyperacusis Device- hyperacusis research

I am writing this to anyone who experiences physical pain from sounds. I want you to know that you are not crazy and that the pain is not “all in your head.” You have likely been told this many times in many different ways by medical professionals and friends family members and people in your community.

You are the only one inside your body and you are the only one who experiences your pain. You deserve to be believed and taken seriously by medical professionals friends family members and people in your community.

 You have a right to live a pain-free life, and you should never be forced into a situation that is physically painful. I know that dealing with the pain every day and having to constantly fight to get the noise accommodations that you need can be miserable. I understand what it’s like to be forced to do something that causes you physical pain against your will.

Sometimes it just becomes too much and you just can’t handle it anymore can’t handle the pain can’t handle the disbelief can’t handle the lack of accommodations.  Everyone thinks that you just need to expose yourself to sound and desensitize but this only makes the pain and the Hyperacusis worse. They have you do therapy but the therapists think that Hyperacusis is psychological and that you just need to get over your fear of sound.

There is so little research done on your condition that you barely have any proof or evidence to show anyone that you are in physical pain and exposure is necessarily the right answer. You likely don’t even know anyone else who has your condition end it feels like no one understands or can relate.

I want you to know though there are other people like you other people who experience physical pain from sounds. Continue to fight, continue to research, and continue to try to educate your medical professionals friends family and community about Hyperacusis. You may not know it now but you’re simple existence is helping to educate and raise awareness about Hyperacusis to make things better for those who come after you. 



I pray for this horrible pandemic to end and I want for no one else to die. There are some things however that I would like to see continue after this pandemic, The social distancing has been very helpful for my Hyperacusis as I have not had to attend school and most of the places that were closed down I was unable to attend anyway my pain level has been very low which I am happy about.

I am actually able to participate in more activities during this pandemic is there are so many things now online using video conferencing my school is going to begin doing distance-learning on April 14 which I am excited about.

I think that is unfair however that the school is only now willing to do distance-learning during this pandemic and that my school system was unwilling to do so for my Hyperacusis before. I also think that is unfair that now that the majority of people can no longer participate in events now they have them online but when we with Hyperacusis cannot participate no one bothers to give us online or virtual events.

People also understand during this pandemic that social distancing is not simply for the sake of isolating to be isolating it is for a medical reason the same is true with Hyperacusis the only difference is that it is not contagious and for the most part does not kill people (except suicide from pain) my hope is that after this pandemic Society will

1. Be more understanding of why people with certain chronic pain or medical conditions are not able to do things or participate and if this is a medical thing and stop trying to force people to do things that are physically harmful to them

2. Continue to host virtual an online events because there are a lot of people who are unable to participate or attend places on a normal basis due to their medical condition or disability and they deserve to be able to participate too

3. Continue to allow for online schooling in Maryland and in other parts of the US and around the world where it was previously not allowed

My mother pulls my closet door open slowly “Good morning sleeping beauty time to wake up“ I feel my head pounding even though I’ve been in the closet all night I’m still in a lot of pain from yesterday. I open my eyes I slowly push back my blanket and climb out of my closet grab my earplugs from the pouch in my closet and going to the bathroom.

I try to close the bathroom door slowly so that it doesn’t make noise then I walk over to the toilet and very careful lift the lid so that it doesn’t bang against the back of the toilet I use the toilet then it’s time for me to flush I open the bathroom door put in my earplugs press down the handle and run out off the bathroom.

The toilet sounds like it’s roaring and despite trying to get away as quickly as I can my four head and temples and the area on the sides of my head above my ears throb with pain I wait in the guest bedroom until the toilet is finish flushing my mother laughs at me I walk back into the bathroom my temples forehead and the area on the sides of my head above my ears from the toilet flushing I know they’ll still be hurting for about another hour from the flush.

I turn on the water trickling so that it doesn’t make much noise and wash my hands then I reach over to put on my deodorant my arm accidentally knocks over the air spray on the counter the clang it makes causes a sharp pain in my temples and the sides of my head above my ears. The worst part is the pain does not go away immediately from accidents like these but lingers for about 30 minutes.

I stand the bottle upright and put on my deodorant then I open the door and try to carefully take out my toothbrush without clanking against any other items luckily this morning I am successful I squeeze some toothpaste onto the toothbrush and turn on the water at a trickle I brush my teeth I then reach for a cotton ball and put a tiny bit of facial cleansing solution on it as the amount of water required to wash my face is painfully loud.

I slowly open the bathroom door and walk back into my bedroom I unplug my Sony headphones from the wall and put them in their case to take to school then I unplug my iPad and put it in my backpack I put my watch on my wrist and double check my cell phone to make sure it’s on volume one then I ask Siri for the weather.

I pull out a dress from my closet careful not to let the hangers clang together. Then I put on my earplugs and walk downstairs The humming of the refrigerator increases the throbbing pain on my forehead, temples, and the area on the side of my head above my ears I walk over to my tray and tried to gently set it down on the kitchen counter. I get a large paper plate as the metal plates make noise that is painful then I get a paper cup to use instead of a metal bowl. Then I reach up to get a drinking cup luckily the cup is by itself so it doesn’t make any noise I try to slowly and quietly close the cabinet door.

The refrigerator is still humming increasing the throbbing pain especially on my four-head I open the refrigerator pull out my non my yogurt and my juice. Then I. Get a plastic spoon and I put the yogurt in the bowl put the non-on the plate and pour the juice into the cup. Then I walk over and open the freezer it’s even louder than the refrigerator and intensifies the throbbing pain I reach in and carefully pull out ice pack catch up I put it in my lunchbox I open the refrigerator and pull out the baggie of bagels then I reach in and get the cream

I try not to cringe my four head throbs with pain. I get a paper plate and a plastic knife. I put the bagel in the toaster and hold down the lever because the toaster is broken. As I stand there waiting the refrigerator sounds like it’s roaring like a truck, my forehead throbs it feels like someone is punching me. Finally the bagel ready is spread the cream cheese on the bagel and then reach into the drawer to get tinfoil.

I try to tear of the tinfoil gently but it still makes it tearing crackling sound which causes more throbbing pain on my four head and the sides of my head above my ears. I put my bagel into my lunchbox and walk upstairs to get Mommy I need her to use the microwave to heat up my food because I can’t do it because it’s too loud. after I get Mommy I put on my Apple Watch I stand in my bedroom and wait I can hear the microwave from my room but at least from this distance it isn’t painful I wait until I hear the three beeps letting me know the microwave is done before I walk back downstairs.

I turn on the sink water at a trickle and then dry my hands on a paper towel I shut my bedroom door and lay on my bed and do my eyes drops. Then go downstairs pick up my tray and walk back upstairs.

As I eat my non and take my medicine my ear and temple still feel the sharp pain and my forehead and the side of my head above my ear still throb from all the noise this morning. Then I go into my bedroom put on my backpack grab my tray and walk downstairs. I walk to the kitchen the refrigerator is still on I try to set my tray down gently on the counter then I through away my paper plate and cups.

I reach into the coat closet pull out my jacket and walk with my mother to the front door. As she opens the door The alarm system shouts “Front door“ causing intense throbbing on my forehead. As I step outside I can hear the noise of traffic from Columbia Road and 29 it causes throbbing pain on my forehead and the on the side of my head above my ears. I open the car door and tried to close it gently “your door didn’t close all the way my mom says“ I shut the door harder causing a loud boom which feels like I’m being punched in the forehead.

My mother starts up the car right away the car starts beeping loudly causing sharp pain in my ear and temple, she puts on her seatbelt stopping the beeping.

The car sounds like a waterfall The loud engine causes more throbbing pain on my forehead. We you drive off of April Journey and on to Columbia Road then on to another neighborhood. Luckily we haven’t encountered very many other cars yet as we haven’t gotten on the main road yet. My mother turns onto Route 108 actually we’ve been driving for about three minutes a School bus pulls up beside us it sounds like a power tool and adds to the throbbing pain on my forehead “I’m trying to get away from the bus but I can’t run the other cars over my mother says“.

After we finally get away from the bus another car honks it’s horn causing more stabbing pain. We turn into the school parking lot and pull up to the school I check the time to make sure that I will have enough time to get settled into Mr. L’s room before the students start to arrive.

I put on my backpack and my Sony headphones and opened the car door. I walked briskly to the school door. I hope someone comes to open the door soon. My four head throbs from the car engines and other outside noises. Mr. H opens the door, I walk down the hallway I can hear women talking and laughing loudly it worsens The throbbing pain on my four head and the sides of my head above my ears I try not to cringe.

I set my backpack down on the floor and took out my iPad locker key and phone. I push the button on my locker and swipe the key in front of it. It makes a loud automated half beeping half crunching sound which causes both sharp pain in my temple and ear and throbbing on my forehead. I tried to wrestle my backpack into my locker. The zippers on my backpack are metal and clank against the locker walls this and sharp pain into my ear and temple. I walk into the storage closet and get my backpack then I unplug my Vizio and shut Mr. L’s door before the other kids start to arrive.

I walk over and sit down at my desk carefully not to let the chair leg touch the desk leg and put my Vizio iPad cell phone and locker key into my backpack. The kids start to enter and they open the classroom door increasing the level of noise coming from the hallway. One of the students closes the door and they all sit down, someone’s chair clangs against the desk creating sharp pain in my temple and ear. “All right everyone let’s circle up Mr. L says”. I turn my chair around carefully to face the circle. Mr. L goes over the agenda for the day and talks about some other events happening later in the week someone says something and then Dr. F and Mr. L start talking and laughing too loud . This causes more throbbing pain on my forehead and The side of my head above my ears.

My watch vibrates silently on my wrist letting me know it’s time to go sit in BSI before the transition. I turned around my chair and pushed it in carefully then I took the handle on my backpack and tried to carefully roll up with the chairs so that it doesn’t make noise. I open the door and walk down the hallway. I can hear people talking loudly which causes throbbing pain on my forehead. I walk into Miss Y’s office and shut the door. I walk over to the volume control and turn it down to zero about two minutes later the bell rings even with the speaker on zero. I can hear it from the hallway but luckily it’s not as painful.

A bunch of students and staff walked through the hallways talking and laughing very loudly. The throbbing pain on my forehead and the sides of my head above my ears increases, they do this for about three minutes. Then the second bell rings and people are still in the hallways talking loudly for about another minute. I wait for the hallways to clear then I walk down the hall to Mrs. LT room for Spanish class. I close the door carefully as I walk in the door squeaks sending sharp pain in my ear in Temple.

I try to pull out my chair carefully so as not to hit the table. Eland O and Mr. G are already sitting at the table. I pull out my iPad and start working on the packet for this week. As I work I can hear the sounds of people talking loudly in the hallways. It is painful. Miss LT rummages around in her desk. It sounds like she’s banging it causes throbbing pain in my forehead and the sides of my head above my ear. I keep working on my iPad, luckily O and E have very quiet voices. I share my document with Mr. G then my watch vibrates letting me know it’s time for me to go.

I put my stuff in my backpack and walked over to the door. I managed to open it without it squeaking I walked down the hallway to Mr. H’s office. I gently shut the door and then walk over and turn off his music then I set the announcement volume on zero. About a minute later the bell rings students and staff talk loudly in the hallways intensifying my pain. This continues for about three minutes then the bell rings, fortunately they settle down pretty quickly. I slowly open the door and walk down the hallway which is still painfully loud for me to Mrs. F’s room. I close the door gently so that it doesn’t make noise then I walk over to my desk and try to carefully pull out my chair.

I take my Vizio out of my backpack and try to gently set it down on the table then I start working on my math worksheet. I can hear people talking loudly in the hallways, my forehead and the side of my head above my ears intensify the throbbing pain. About halfway through class Miss B comes in. Later my watch vibrates I try to quickly and quietly pack up my stuff I walk out the door and into the hallway to Miss Youngstrum’s room

I go in and shut the door A few seconds later Miss B comes in. The bell rings and students and staff start talking loudly. Their voices cause more throbbing pain. The second bell rings but the hallways take a while to quiet down then Miss B and I walk to the double doors leading outside. Even though it’s loud outside it’s quieter to walk around the outside of the building then through the hallways. Someone started using a power tool which causes the throbbing pain on my forehead and The sides of my head above my ears to increase I run to try to get away from the noise. Miss B opens the door and I wait in the vestibule while Miss B asks people to be quiet because the students are talking very loudly in the hallways.

Their voices are very painful and cause sharp pain on my temples and throbbing pain on my forehead. She’s finally able to get the students to quiet down for long enough for me to run to the room Mrs. B puts the quiet sign on the outside of the door and then closes it. I start reading braille but after about a few minutes the kids are shouting and there’s a lot of banging noises I cringe because the shouting and banging causes throbbing and stabbing pain in my ears, temples, forehead and the sides of my head above my ears it feels like I am being punched repeatedly with something sharp.

Miss B goes out into the hallway to try to get the students and to staff quiet down. They quiet down slightly but then later on start shouting again, which intensifies my pain. I do some brailing on my brailler I try to push down on the keys gently but it still sounds sharp pains into my ear and temple. My watch vibrates letting me know it’s time to go. I start to pack up then Miss B walks outside to ask the students to quiet down so I can run to the vestibule.

I walk with Miss B around the school building and back into Bridges. The kids are transitioning so I wait. People are talking loudly in the hallways, my head throbs.

Finally the hallways begin to clear and I walk down the hallway to Miss LT’s room where there are still people talking loudly in the hallways which is painful for me. I open the door and step inside and gently close the door. I walk over to my desk and try to gently pull out my chair so that it doesn’t make noise.

I take out my iPad and Visio and start working on my work. Some people are talking loudly in the hallways which makes my forehead throb with pain. Mr. H opens the door to bring in my snack. The door squeaks sending sharp pain through my ears and temples. I eat my snack and continue working on my work. I wish I could just put my head down and rest. I’m in so much pain from the daily noise so far today but I know I need to keep working on my work.

The pain is starting to make me feel very tired and exhausted. My watch vibrates letting me know it’s time for me to go, I pack up my stuff and gently push my chair in I walked down the hallway into Mr. H’s office and turn off his music and make sure the announcement volume is set to zero. Then I shut the door, about two minutes later the bell rings and people start talking loudly during the transition.

The pain now makes me feel weak and exhausted. Just three and a half more hours left until the pain would at least stop increasing about 3 1/2 hours I tell myself.

The second bell rings I wait for the hallways to clear and then walk to Mr. L’s room. I tried to gently close the door behind me then I tried to carefully pull out my chair so as not to hit the desk. I pull out my iPad and start working on my work. Mr. L is explaining the assignment to the class. I put up my signal to remind him to lower his voice as he is speaking painfully loud. I work on my work.

My head is throbbing with pain I can hear them watching a movie in Mrs. LT’s room. It is loud and causes more throbbing pain on the sides of my head above my ears. I can hear Miss L talking loudly through the wall as well. Finally my watch vibrates letting me know it’s time to go I pack up my iPad and try to gently push my chair in I walk down the hallway towards Miss Y’s office.

I can hear the sound of someone walking with high heels on it sends sharp pains through my ears and temples. I walk to Miss Y’s office and turn down the volume on the speaker then I gently close the door.

The bell rings and the hallways get even louder students and staff start talking loudly creating more throbbing pain on the side of my head above my ears and on my forehead. After about three minutes the halls begin to clear and the second bell rings I get my locker key and head into the hallway.

I can hear staff talking loudly and someone else walking in heels which increases my pain. I press the button on my locker and swipe my card in front of it makes that loud half crunching have a beeping noise again causing sharp pain in my temple and ear and throbbing pain on my forehead.

I open up my backpack and take out my lunchbox and then walk back into Miss Y’s office. I carefully pull out the chair and then gently unwrap the tinfoil on my bagel so it doesn’t make noise. I eat my lunch then the bell rings for sixth period. The halls get louder again as students and staff transition.

Miss Y steps out and tries to quickly close the door behind her. The noise in the hallway only intensifies my pain. The second bell rings but I wait a while for the hallway to clear. I carry my lunchbox over to my locker press the button and swipe my key. Again the locker makes a loud Half crunching half beeping noise sending sharp pain into my temple and ear and throbbing pain on my forehead.

I walk to Mr. C’s room for government class The hallways are noisy my head pulses with pain so I speed up and then try to quickly close the door as soon as get into Mr. C’s room. I try to carefully pull out my chair so that it doesn’t make noise when I sit down and take out my iPad to do my work A few minutes later some kids are making a lot of noise outside of Mr. C’s window which increases my pain Mrs. Ch tries to signal to them to quiet down.

After a while my watch vibrates letting me know it is time for me to leave. I pack up my iPad and gently push my chair as I walk through the hallway into Miss Y’s office and gently close the door behind me.

The bell rings about a minute later and the hallway gets loud again. My head throbs with pain finally the hallways begin to settle down and the second bell rings. I open the door and walk down the hallway to Miss LT’s room I try to gently close the door behind me but it still squeaks sending sharp pain through my ears and temples.

My four head and temples ears and the sides of my head above my ears all hurt so badly I just want to put my head down and rest this pain is so tiring. I pull out my chair carefully and sit down. I take out my Vizio book and try to gently place it on the table I work on my work.

The noise from the hallway continues to increase the throbbing pain on my four head and the sides of my head above my ears. I it hard for me to concentrate due to the pain caused by the other children talking at one time. Finally my watch vibrates letting me know that it’s time to pack up to go home.

I plug in my Vizio book and take out my iPad locker key and phone from my backpack. I swiped my locker key in front of my locker and press the button again it makes the half beeping half crunches noise causing more sharp pain in my temples and ears and throbbing pain on my forehead I get the backpack from inside my locker and put my phone, iPad and locker key in there then I take my school backpack and put it in the storage closet.

I go stand in the vestibule, my mother walks up to the door and I walk with her back to the car there’s a lot of buses with their engines going it is exacerbating the throbbing pain on my forehead and the sides of my head above my ears.

I get in the car and shut the door boom the pain feels like a punch in my forehead and the area on the sides of my head above my ears. The pain from shutting the car door now is worse then when I did it this or ing because I am already in more pain from school and am even more sensitive.

My mother starts up the car and we begin to drive out of the parking lot. The car seems even louder then this morning, luckily non of the other vehicles honk their horns. We pass by a large truck on the road which sends pulsing pain through my whole head. Finally we turn on to our neighborhood and pull into our driveway and I take off my sony headphones.

I grab my backpack and open the car door then I close the car door and it makes a loud boom which feels like I am being punched on the sides of my head above my ears and my forehead, as I walk up to the front door I can hear the generators outside which cause me more pain. Once I get inside I hang up my coat careful not to let the hanger clang against the other hangers.

Then I walk into the kitchen, the refrigerator is on which increases the throbbing pain on my forehead I put my lunch box on the counter put the ice pack in the freezer which makes the refrigerator noise louder. Next I throw away my plastic bags in the trash can and head upstairs. I go into the bathroom and carefully close the door after I use the toilet I open the door slowly press down the lever and run.

It’s worse then earlier pain throbs through my whole head. I wait for the toilet to finish flushing then I go back in and wash my hands with the water trickling. I walk into my bedroom and climb into my closet.

I get under the covers, lay down and close the door I lay in my closet under my covers, my ears, temples, forehead, and the sides of my head above my ears all merge into one large throbbing pain. I close my eyes and try to fall asleep. About 3 ½ hours later my mother opens my closet door “its time for you to get up so you can take your medicine and hydrate she says”.

After she leaves I lay in my closet and drink water for about 5min My pain level before my nap was an 8 now it is about 7.75 then I get up and wash out the bathtub but I don’t rinse it or run the water because that makes noise.

My mother brings my tray to the bottom of the steps and I take it the rest of the way up and eat dinner. After I finish eating I walk into my room and get my cell phone. I call my mother and tell her I am coming downstairs and ask her to turn everything off and ask daddy to be quiet. I pick up my try and walk downstairs I place the tray gently on the counter, the refrigerator is still on making my forehead throb.

I throw away all of the paper plates and bowls and put the plastic silverware on the counter to be washed. I get my eyedrops and take them upstairs. Then I turn on the water at a trickle to wash my hands and then I go into my closet, lay down and do my eyedrops.

I walk into the bathroom again gently take out my tooth brush and turn on the water trickling to brush my teeth. Then I use my facial cleansing water to wash my face so that I don’t have to deal with the water pressure. I go back into my closet and lay down for about 15min, then I reach into my closed pocket and do my other eye drop. I send daddy a text message telling him that the tub is clean and it’s bath night.

I walk into the guest bedroom because my bedroom is next to the bathroom so when daddy runs the water it is too loud in my bedroom. I sit on the bed in the guest bedroom while daddy runs my water my forehead and the sides of my head above my ears my temples and my ears all throb and hurt a lot from all of the noise of the day. I hear that the bath water has stopped running so I open the door to the guest bedroom and walk into the bathroom “thank you I say to daddy”.

I gently close the bathroom door put on my shower cap and get into the tub. I wash off and then lay in the hot water for a few minutes, I can still feel the throbbing pain throughout my head and ears. I get out of the tub and put on my deodorant and night gown, then I open the bathroom door walk over to the bathtub and press the drain and run.

The water makes a very loud noise as it drains out of the tub I try to gently close the bathroom door behind me my forehead throbs from the sound. I go into the guest bedroom and get seven milligrams of melatonin, despite how tired I am on school nights especially it is hard to sleep. I climb into my closet and call my mother to ask her to come and check me in. My mother comes upstairs and shuts me in the closet, I take my melatonin and then say my prayers I laid there for a while, my head hurts so badly, finally I fall asleep.

Nowadays

This was written back in October, fortunately somethings have improved. I now eat on paper plates and paper cups and use plastic silverware. My mother has also been helping me by preparing my tray and doing noisy things in the kitchen for me.

Life through my body, what it’s like living with hyperacusis

    My mother pulls my closet door open slowly “Good morning sleeping beauty time to wake up“   I feel my head pounding even though I’ve been in the closet all night I’m still in a lot of pain from yesterday. I open my eyes I slowly push back my blanket and climb out of my closet  grab my earplugs from the pouch in my closet and going to the bathroom. I try to close the bathroom door slowly so that it doesn’t make noise then I walk over to the toilet and very careful lift the lid so that it doesn’t bang against the back of the toilet I use the toilet then it’s time for me to flush I open the bathroom door put in my earplugs press down the handle and run out off the bathroom. The toilet sounds like it’s roaring and despite trying to get away as quickly as I can my four head and temples and the area  on the sides of my head above my ears throb with pain I wait in the guest bedroom until the toilet is finish flushing my mother laughs at me I walk back into the bathroom my temples forehead and the area on the sides of my head above my ears from the toilet flushing I know they’ll still be hurting for about another hour from the flush. I turn on the water trickling so that it doesn’t make much noise and wash my hands then I reach over to put on my deodorant my arm accidentally knocks over the air spray on the counter the clang it makes causes a sharp pain in my temples and the sides of my head above my ears. The worst part is the pain does not go away immediately from accidents like these but lingers for about 30 minutes. 

I stand the bottle upright and put on my deodorant  then I open the door and try to carefully take out my toothbrush without clanking against any other items luckily this morning I am successful I squeeze some toothpaste onto the toothbrush and turn on the water at a trickle I brush my teeth I then reach for a cotton ball and put a tiny bit of facial cleansing solution on it as the amount of water required to wash my face is painfully loud. I slowly open the bathroom door and walk back into my bedroom I unplug my Sony headphones from the wall and put them in their case to take to school then I unplug my iPad and put it in my backpack I put my watch on my wrist and double check my cell phone to make sure it’s on volume one then I ask Siri for the weather. I pull out a dress from my closet careful not to let the hangers clang together. Then I put on my earplugs and walk downstairs The humming of the refrigerator increases the throbbing pain on my forehead, temples, and the area on the side of my head above my ears I walk over to my tray and tried to gently set it down on the kitchen counter.  I get a large paper plate as the metal plates make noise that is painful then I get a paper cup to use instead of a metal bowl. Then I reach up to get a drinking cup luckily the cup is by itself so it doesn’t make any noise I try to slowly and quietly close the cabinet door. The refrigerator is still humming increasing the throbbing pain especially on my four-head I open the refrigerator pull out my non my yogurt and my juice. Then I. Get a plastic spoon and I put the yogurt in the bowl put the non-on the plate and pour the juice into the cup. Then I walk over and open the freezer it’s even louder than the refrigerator and intensifies the throbbing pain I reach in and carefully pull out ice pack catch up I put it in my lunchbox I open the refrigerator and pull out the baggie of bagels then I reach in and get the cream

cheese. 

I try not to cringe my four head throbs with pain. I get a paper plate and a plastic knife. I put the bagel in the toaster and hold down the lever because the toaster is broken. As I stand there waiting the refrigerator sounds like it’s roaring like a truck, my forehead throbs it feels like someone is punching me. Finally the bagel ready is spread the cream cheese on the bagel and then reach into the drawer to get tinfoil.  I try to tear of the tinfoil gently but it still makes it tearing crackling sound which causes more throbbing pain on my four head and the sides of my head above my ears. I put my bagel into my lunchbox and walk upstairs to get Mommy I need her to use the microwave to heat up my food because I can’t do it because it’s too loud. after I get Mommy I put on my Apple Watch I stand in my bedroom and wait I can hear the microwave from my room but at least from this distance it isn’t painful I wait until I hear the three beeps letting me know the microwave is done before I walk back downstairs. I turn on the sink water at a trickle and then dry my hands on a paper towel I shut my bedroom door and lay on my bed and do my eyes drops. Then go downstairs pick up my tray and walk back upstairs. 

As I eat my non and take my medicine my ear and temple still feel the sharp pain and my forehead and the side of my head above my ear still throb from all the noise this morning.  Then I go into my bedroom put on my backpack grab my tray and walk downstairs. I walk to the kitchen the refrigerator is still on I try to set my tray down gently on the counter then I through away my paper plate and cups. I reach into the coat closet pull out my jacket and walk with my mother to the front door. As she opens the door The alarm system shouts “Front door“ causing intense throbbing on my forehead. As I step outside I can hear the noise of traffic from Columbia Road and 29 it causes throbbing pain on my forehead and the on the side of my head above my ears.  I open the car door and tried to close it gently “your door didn’t close all the way my mom says“ I shut the door harder causing a loud boom which feels like I’m being punched in the forehead. My mother starts up the car right away the car starts beeping loudly causing sharp pain in my ear and temple, she puts on her seatbelt stopping the beeping. 

The car sounds like a waterfall The loud engine causes more throbbing pain on my forehead. We you drive off of April Journey and on to Columbia Road then on to another neighborhood. Luckily we haven’t encountered very many other cars yet as we haven’t gotten on the main road yet. My mother turns onto Route 108 actually we’ve been driving for about three minutes a School bus pulls up beside us it sounds like a power tool and adds to the throbbing pain on my forehead “I’m trying to get away from the bus but I can’t run the other cars over my mother says“. After we finally get away from the bus another car honks it’s horn causing more stabbing pain. We turn into the school parking lot and pull up to the school I check the time to make sure that I will have enough time to get settled into Mr. L’s room before the students start to arrive.

          

         I put on my backpack and my Sony headphones and opened the car door. I walked briskly to the school door. I hope someone comes to open the door soon. My four head throbs from the car engines and other outside noises. Mr. H opens the door,  I walk down the hallway I can hear women talking and laughing loudly it worsens The throbbing pain on my four head and the sides of my head above my ears I try not to cringe. I set my backpack down on the floor and took out my iPad locker key and phone.  I push the button on my locker and swipe the key in front of it. It makes a loud automated half beeping half crunching sound which causes both sharp pain in my temple and ear and throbbing on my forehead. I tried to wrestle my backpack into my locker. The zippers on my backpack are metal and clank against the locker walls this and sharp pain into my ear and temple. I walk into the storage closet and get my backpack  then I unplug my Vizio and shut Mr. L’s door before the other kids start to arrive. 

I walk over and sit down at my desk carefully not to let the chair leg touch the desk leg and put my Vizio iPad cell phone and locker key into my backpack.  The kids start to enter and they open the classroom door increasing the level of noise coming from the hallway. One of the students closes the door and they all sit down, someone’s chair clangs against the desk creating sharp pain in my temple and ear.  “All right everyone let’s circle up Mr. L says”. I turn my chair around carefully to face the circle. Mr. L goes over the agenda for the day and talks about some other events happening later in the week someone says something and then Dr. F and Mr. L start talking and laughing too loud . This causes more throbbing pain on my forehead and The side of my head above my ears. 

My watch vibrates silently on my wrist letting me know it’s time to go sit in BSI before the transition. I turned around my chair and pushed it in carefully then I took the handle on my backpack and tried to carefully roll up with the chairs so that it doesn’t make noise. I open the door and walk down the hallway. I can hear people talking loudly which causes throbbing pain on my forehead. I walk into Miss Y’s office and shut the door. I walk over to the volume control and turn it down to zero about two minutes later the bell rings  even with the speaker on zero. I can hear it from the hallway but luckily it’s not as painful. A bunch of students and staff walked through the hallways talking and laughing very loudly. The throbbing pain on my forehead and the sides of my head above my ears increases, they do this for about three minutes. Then the second bell rings and people are still in the hallways talking loudly for about another minute. I wait for the hallways to clear then I walk down the hall to Mrs. LT room for Spanish class. I close the door carefully as I walk in the door squeaks sending sharp pain in my ear in Temple. I try to pull out my chair carefully so as not to hit the table. Eland  O and Mr. G are already sitting at the table. I pull out my iPad and start working on the packet for this week. As I work I can hear the sounds of people talking loudly in the hallways. It is painful. Miss LT rummages around in her desk. It sounds like she’s banging it causes throbbing pain in my forehead and the sides of my head above my ear. I keep working on my iPad, luckily O and E have very quiet voices. I share my document with Mr. G then my watch vibrates letting me know it’s time for me to go. 

 I put my stuff in my backpack and walked over to the door. I managed to open it without it squeaking I walked down the hallway to Mr. H’s office. I gently shut the door and then walk over and turn off his music then I set the announcement volume on zero. About a minute later the bell rings students and staff talk loudly in the hallways intensifying my pain. This continues for about three minutes then the bell rings,  fortunately they settle down pretty quickly. I slowly open the door and walk down the hallway which is still painfully loud for me to Mrs. F’s room. I close the door gently so that it doesn’t make noise then I walk over to my desk and try to carefully pull out my chair. I take my Vizio out of my backpack and try to gently set it down on the table then I start working on my math worksheet. I can hear people talking loudly in the hallways, my forehead and the side of my head above my ears intensify the throbbing pain. About halfway through class Miss B comes in.  Later my watch vibrates I try to quickly and quietly pack up my stuff I walk out the door and into the hallway to Miss Youngstrum’s room   

I go in and shut the door A few seconds later Miss B comes in.  The bell rings and students and staff start talking loudly. Their voices cause more throbbing pain. The second bell rings but the hallways take a while to quiet down  then Miss B and I walk to the double doors leading outside. Even though it’s loud outside it’s quieter to walk around the outside of the building then through the hallways. Someone started using a power tool which  causes the throbbing pain on my forehead and The sides of my head above my ears to increase I run to try to get away from the noise. Miss B opens the door and I wait in the vestibule while Miss B asks people to be quiet because the students are talking very loudly in the hallways. 

Their voices are very painful and cause sharp pain on my temples and throbbing pain on my forehead. She’s finally able to get the students to quiet down for long enough for me to run to the room Mrs. B puts the quiet sign on the outside of the door and then closes it. I start reading braille but after about a few minutes the kids are shouting and there’s a lot of banging noises I cringe because the shouting and banging causes throbbing and stabbing pain in my ears, temples, forehead and the sides of my head above my ears it feels like I am being punched repeatedly with something sharp. Miss B goes out into the hallway to try to get the students and to staff quiet down. They quiet down slightly but then later on start shouting again, which intensifies my pain. I do some brailing on my brailler I try to push down on the keys gently but it still sounds sharp pains into my ear and temple. My watch vibrates  letting me know it’s time to go. I start to pack up then Miss B walks outside to ask the students to quiet down so I can run to the vestibule. I walk with Miss B around the school building and back into Bridges. The kids are transitioning so I wait. People are talking loudly in the hallways, my head throbs. 

Finally the hallways begin to clear and I walk down the hallway to Miss LT’s room where there are still people talking loudly in the hallways which is painful for me. I open the door and step inside and gently close the door. I walk over to my desk and try to gently pull out my chair so that it doesn’t make noise.  I take out my iPad and Visio and start working on my work. Some people are talking loudly in the hallways which makes my forehead throb with pain. Mr. H opens the door to bring in my snack. The door squeaks sending sharp pain through my ears and temples. I eat my snack and continue working on my work. I wish I could just put my head down and rest. I’m in so much pain from the daily noise so far today but I know I need to keep working on my work. The pain is starting to make me feel very tired and exhausted. My watch vibrates letting me know it’s time for me to go, I pack up my stuff and gently push my chair in  I walked down the hallway into Mr. H’s office and turn off his music and make sure the announcement volume is set to zero. Then I shut the door, about two minutes later the bell rings and people start talking loudly during the transition. The pain now makes me feel weak and exhausted. Just three and a half more hours left until the pain would at least stop increasing about 3 1/2 hours I tell myself. 

The second bell rings I wait for the hallways to clear and then walk to Mr. L’s room. I tried to gently close the door behind me then I tried to carefully pull out my chair so as not to hit the desk. I pull out my iPad and start working on my work. Mr. L is explaining the assignment to the class. I put up my signal to remind him to lower his voice as he is speaking painfully loud. I work on my work. My head is throbbing with pain I can hear them watching a movie in Mrs. LT’s room. It is loud and causes more throbbing pain on the sides of my head above my ears. I can hear Miss L talking loudly through the wall as well. Finally my watch vibrates letting me know it’s time to go I pack up my iPad and try to gently push my chair in  I walk down the hallway towards Miss Y’s office. I can hear the sound of someone walking with high heels on it sends sharp pains through my ears and temples. I walk to Miss Y’s office and turn down the volume on the speaker then I gently close the door. The bell rings and the hallways get even louder students and staff start talking loudly creating more throbbing pain on the side of my head above my ears and on my forehead. After about three minutes the halls begin to clear and the second bell rings I get my locker key and head into the hallway.

 I can hear staff talking loudly and someone else walking in heels which increases my pain.   I press the button on my locker and swipe my card in front of it makes that loud half crunching have a beeping noise again causing sharp pain in my temple and ear and  throbbing pain on my forehead. I open up my backpack and take out my lunchbox and then walk back into Miss Y’s office. I carefully pull out the chair and then gently unwrap the tinfoil on my bagel so it doesn’t make noise. I eat my lunch then the bell rings for sixth period. The halls get louder again as students and staff transition. Miss Y steps out and tries to quickly close the door behind her. The noise in the hallway only intensifies my pain. The second bell rings but I wait a while for the hallway to clear.  I carry my lunchbox over to my locker press the button and swipe my key. Again the locker makes a loud Half crunching half beeping noise sending sharp pain into my temple and ear and throbbing pain on my forehead. I walk to Mr. C’s room for government class The hallways are noisy my head pulses with pain so I speed up and then try to quickly close the door as soon as get into Mr. C’s room. I try to carefully pull out my chair so that it doesn’t make noise when I sit down and take out my iPad to do my work A few minutes later some kids are making a lot of noise outside of Mr. C’s window which increases my pain Mrs. Ch tries to signal to them to quiet down.  After a while my watch vibrates letting me know it is time for me to leave. I pack up my iPad and gently push my chair as I walk through the hallway into Miss Y’s office and gently close the door behind me. 

The bell rings about a minute later and the hallway gets loud again. My head throbs with pain finally the hallways begin to settle down and the second bell rings. I open the door and walk down the hallway to Miss LT’s room I try to gently close the door behind me but it still squeaks sending sharp pain through my ears and temples. My four head and temples ears and the sides of my head above my ears all hurt so badly I just want to put my head down and rest this pain is so tiring. I pull out my chair carefully and sit down. I take out my Vizio book and try to gently place it on the table I work on my work. The noise from the hallway continues to increase the throbbing pain on my four head and the sides of my head above my ears. I it hard for me to concentrate due to the pain caused by the other children talking at one time. Finally my watch vibrates letting me know that it’s time to pack up to go home. I plug in my Vizio book and take out my iPad locker key and phone from my backpack. I swiped my locker key in front of my locker and press the button again it makes the half beeping half crunches noise causing more sharp pain in my temples and ears and throbbing pain on my forehead I get the backpack from inside my locker and put my phone, iPad and locker key in there then I take my school backpack and put it in the storage closet. I go stand in the vestibule, my mother walks up to the door and I walk with her back to the car there’s a lot of buses with their engines going it is exacerbating the throbbing pain on my forehead and the sides of my head above my ears. 

   

          I get in the car and shut the door boom the pain feels like a punch in my forehead and the area on the sides of my head above my ears. The pain from shutting the car door now is worse then when I did it this or ing because I am already in more pain from school and am even more sensitive. My mother starts up the car and we begin to drive out of the parking lot. The car seems even louder then this morning, luckily non of the other vehicles honk their horns. We pass by a large truck on the road which sends pulsing pain through my whole head. Finally we turn on to our neighborhood and pull into our driveway and I take off my sony headphones. I grab my backpack and open the car door then I close the car door and it makes a loud boom which feels like I am being punched on the sides of my head above my ears and my forehead, as I walk up to the front door I can hear the generators outside which cause me more pain. Once I get inside I hang up my coat careful not to let the hanger clang against the other hangers. 

Then I walk into the kitchen, the refrigerator is on which increases the throbbing pain on my forehead I put my lunch box on the counter put the ice pack in the freezer which makes the refrigerator noise louder. Next I throw away my plastic bags in the trash can and head upstairs. I go into the bathroom and carefully close the door after I use the toilet I open the door slowly press down the lever and run. It’s worse then earlier pain throbs through my whole head. I wait for the toilet to finish flushing then I go back in and wash my hands with the water trickling. I walk into my bedroom and climb into my closet. I get under the covers, lay down and close the door I lay in my closet under my covers, my ears, temples, forehead, and the sides of my head above my ears all merge into one large throbbing pain. I close my eyes and try to fall asleep. About 3 ½ hours later my mother opens my closet door “its time for you to get up so you can take your medicine and hydrate she says”. After she leaves I lay in my closet and drink water for about 5min My pain level before my nap was an 8 now it is about 7.75 then I get up and wash out the bathtub but I don’t rinse it or run the water because that makes noise. 

My mother brings my tray to the bottom of the steps and I take it the rest of the way up and eat dinner. After I finish eating I walk into my room and get my cell phone. I call my mother and tell her I am coming downstairs and ask her to turn everything off and ask daddy to be quiet. I pick up my try and walk downstairs I place the tray gently on the counter, the refrigerator is still on making my forehead throb. I throw away all of the paper plates and bowls and put the plastic silverware on the counter to be washed. I get my eyedrops and take them upstairs. Then I turn on the water at a trickle to wash my hands and then I go into my closet, lay down and do my eyedrops. I walk into the bathroom again gently take out my tooth brush and turn on the water trickling to brush my teeth. Then I use my facial cleansing water to wash my face so that I don’t have to deal with the water pressure. I go back into my closet and lay down for about 15min, then I reach into my closed pocket and do my other eye drop. I send daddy a text message telling him that the tub is clean and it’s bath night. I walk into the guest bedroom because my bedroom is next to the bathroom so when daddy runs the water it is too loud in my bedroom. I sit on the bed in the guest bedroom while daddy runs my water my forehead and the sides of my head above my ears my temples and my ears all throb and hurt a lot from all of the noise of the day. I hear that the bath water has stopped running so I open the door to the guest bedroom and walk into the bathroom “thank you I say to daddy”. 

I gently close the bathroom door put on my shower cap and get into the tub. I wash off and then lay in the hot water for a few minutes, I can still feel the throbbing pain throughout my head and ears. I get out of the tub and put on my deodorant and night gown, then I open the bathroom door walk over to the bathtub and press the drain and run. The water makes a very loud noise as it drains out of the tub I try to gently close the bathroom door behind me my forehead throbs from the sound. I go into the guest bedroom and get seven milligrams of melatonin, despite how tired I am on school nights especially it is hard to sleep. I climb into my closet and call my mother to ask her to come and check me in. My mother comes upstairs and shuts me in the closet, I take my melatonin and then say my prayers I laid there for a while, my head hurts so badly, finally I fall asleep.

I was born with cataracts and am low vision legally blind I was also diagnosed with sensory processing disorder when I was five. When I was six years old I began to experience pain from very very loud sounds such as the cafeteria, weddings, and birthday parties, I was ok though as long as I wore earplugs.

At age 7 I started having awful migraines that would last for up to months at a time and were exacerbated by normal everyday sounds. I became unable to attend school and was put on home and hospital. My mother took me to a lot of different doctors but none of them really know what was going on, they said that I had chronic migraines with extreme sound sensitivity.

I became unable to go to the store, attend parties, go to restaurants, or even watch TV on a normal volume due to the physical pain these things caused my head and ears. Around this time I was also diagnosed with glaucoma and lost even more of my vision. In the beginning of third grade my mother took me to see an audiologist as she felt like my sound sensitivity was more extreme than that was just a normal migraine.

The audiologist said that I had a rare disorder called Hyperacusis, unfortunately many of the treatments that he had me do for my Hyperacusis only intensified my pain.

In third grade they started me off at school which was very painful for me The pain eventually built up to the point where I was lying in bed for about a month and ended up on Home and hospital again. Except now my Hyperacusis was even worse even the sound of wind blowing or birds chirping was physically painful and I was no longer able to go outside.

My mother took me to see many different doctors and therapist unfortunately many of them did not believe me about experiencing physical pain from sounds. Many of the doctors thought that my condition was psychosomatic or and emotional disorder. Even the few doctors who did believe that I experienced physical pain was still forcing me to do desensitization and sound exposure therapy.

These plans only increased my pain level which in turn led to me being even more sensitive to sound, I felt so misunderstood and alone and it was so frustrating being in pain and having no one believe me.

In fourth grade, this was also around the time that I started to have seizures and got diagnosed with epilepsy, I was transferred to another school that had a specialized program for students with emotional disabilities. Unfortunately many of these students would scream and bang loudly which was excruciatingly painful for me.

The pain just continue to build up day after day and eventually I was no longer able to continue attending school and once again ended up on home and hospital.

Hyperacusis was even worse now all of the noise from my school had caused a long-term increase in my hyperacusis. I was no longer able to eat in the kitchen the sound of the refrigerator humming caused throbbing pain on my forehead and the side of my head above my ears.

The sound of silverware clanking together felt like I was being stabbed in the temple and ear. I could not even sleep in my own bedroom because I was able to hear the sound of traffic from the road which sent throbbing pain to my forehead. My parents soundproofed my bedroom and I sleep in a closet inside of the soundproof bedroom with both of the doors closed.

Whenever the people would come to mow the grass or blow the leaves my mother had to drive me away because the sound from the power tools felt like I was being punched on the forehead and ears.

I spent most of my time either in my grandmothers underground basement or my closet. I have to watch all of my TV shows on volume one and am unable to listen to music. When my friends come over we just hang out in my bedroom and talk softly.

I was receiving home and hospital instruction at an office building and this was working quite well for me it was quiet and I was able to learn without it being extremely painful.

In fifth grade they decided to have me go back to that school again only this time they said they would put me in a separate room by myself. Only the room they got me in was right next to the music room! The sound of the drums was so painful for me I felt like I was being beaten in the head and ears.

The pain once again continue to build up and I could no longer attend school anymore and ended up on home and hospital once more. I spent most of my time in my closet or in my grandmothers underground basement and although I was in less pain as my environment was much quieter, I was under a constant high level of stress and fear as many of my doctors were still wanting me to do sound exposure therapy.

I felt miserable because no one understood and Hyperacusis no one understood what it was like to experience pain from every sound and I was so afraid they were going to make me do exposure therapy as they were always talking about it.

In sixth grade they started me off in the very beginning of the year on home and hospital but it was there a louder building. This increased my pain level and I thought that I just couldn’t take it anymore I knew that something really bad was about to happen to me and the people were going to start making me do things it was very painful and then I would have to experience that pain but I have experience in the past, so I tried to prevent myself from having to go through that pain again I attempted suicide.

I ended up in a psychiatric hospital The doctors there not that I was just being manipulative and they do not believe that I experienced physical pain from sound they thought that my Hyperacusis was something that I was making up.

They forced me to go to group therapy and eat meals with the other children who were nonverbal and would often scream and bang. I was in more pain now than I have ever been in my life who is even more painful than the time I fell and fractured my wrist. I felt like my head was going to explode my ear felt like they were on fire, often times I wanted to cry because the pain was so bad.

They tried to convince my parents and I was just being manipulative and that my Hyperacusis was purely a behavioral problem and that I did not experience real physical pain from sound. My mother did not believe this however she and my family did implement the behavioral plan that they sent home with me when I was discharged.

I went to a day program for about a week after being discharged and the doctor they’re decided to take me off of home and hospital. I started going to school at a special program and although it was quieter than some of the schools I’ve been in the past it was extremely loud and painful.

Every day I was in extreme pain and the adults in my life did not believe me at home or at school. At home my parents try to implement behavioral plan which mostly involves me doing things in the kitchen or on the main level. I refused as I was in so much pain and people thought that I was simply being uncooperative.

Every day I wanted to die because the pain was so bad. Finally I decided to do a lot of research of my own to try to find out more information about Hyperacusis I want to research paper to my doctor and after about six months of me refusing to do the plan and trying to explain to them that it was causing me extreme pain they finally got rid of it.

Unfortunately I still continue to attend school for me attending school not only caused me pain while I was at school but also lingering pain on the weekends and days off. I often miss at least one day of school every week due to the pain from sounds.

My migraines were awful and the Hyperacusis was not improving at all. I still wanted to kill myself because I was in so much pain and I didn’t know if it would ever end. Around this time I was also diagnosed with hyperekplexia.

My mother decided to take away my headphones and start forcing me to take showers that summer. The sound of the shower water running sent throbbing pain through my forehead on the side of my head.

The sound of the water hitting the bathtub sent sharp pain into my temples and ears. I cried every time I had to take a shower because it was so painful and the pain lasted long after the shower was finished so even though I showered only every other day I was still in heightened and elevated pain in between.

Without my headphones to cover my whole ears I only have my earplugs. This further elevated my pain level and I continue to make frequent suicide attempts. I was never able to escape from the pain. Finally my mother stop forcing me to take showers and my father was willing to run my bathwater.

I was still in extreme pain though from attending school and not having my headphones at home although thankfully mother would allow me to wear them at school.

I spent all of middle school wanting nothing more than to die just somehow escaped from this pain, I just wanted the pain to go away and no one understood. I made another major suicide attempt in eighth grade because I just wanted to escape from the pain.

I ended up in the emergency room although I was able to convince the psychologist on duty to let me go home. Things did begin to improve slightly after this my doctors and parents agreed to look at some of the more recent research on hyperacusis and different therapies that did not involve sound.

I started using different electrical nerve stimulation devices which helped reduced my pain level some. I was now able to sit in my bedroom without any human protection as well as sit in the upstairs bedrooms when it was quiet without hearing protection without exacerbating my pain.

I am still in extreme pain every day and every day small sounds still hurt me though. This was when I found out about Hyperacusis Research a nonprofit organization dedicated to finding a cure to Hyperacusis with pain.

Their research was what started to help my parents and doctors to understand more about Hyperacusis. I reached out to President Bryan Pollard of Hyperacusis Research and shared many of their research articles with my parents and doctors.

I also found an online support group on Facebook called Hyperacusis Support and Research. This was so helpful for me as I was finally able to talk with other people who had pain Hyperacusis and well were made worse by sound therapy and I have had similar experiences with doctors and family members who did not understand.

In ninth grade they had to shorten my schedule as my pain was just too intense from all of the noise to do a full day of school as I had several classes in core a noisier part of the building, I also received home and hospital instruction from math class which was helpful.

Although my mother is more understanding she still continued to believe in auditory gain theory that if I overprotective then it will make my Hyperacusis worse. I continue to follow Hyperacusis Research and show this information to my parents and doctors. I am now in the 10th grade and attending school is extremely painful for me even though I am in a small specialized program with accommodations.

Now that my mother understands the situation much better we are trying to find a way for me to be able to receive home and hospital instruction but we must find a doctor willing to sign.

Every day I am still in a lot of pain and my main focus is trying to avoid as much noise as possible and to stay in quiet places and looking to different treatments to try to reduce my pain.

I am still on able to attend parties, go to the mall, go to restaurants, eat in my kitchen, do normal activities at school such as going to art or the cafeteria, Watch TV on a normal volume, take a shower, use a microwave, and lots more. I have reached out to some of the researchers who are researching pain Hyperacusis and told them about my situation.

I have decided that I want to dedicate my life to raising awareness and advocacy about Hyperacusis and getting accommodations in place for people with Hyperacusis and helping to inform the medical community about pain Hyperacusis.

I have now started a Facebook page as well as an Instagram business page and YouTube called hyperacusis awareness to help educate policymakers doctors in the community about Hyperacusis. I also continue to closely follow Hyperacusis Research and want to participate in clinical trials for treatment of Hyperacusis once I become 18.

I have had and IEP since I was in kindergarten as I am low vision legally blind. When I got Hyperacusis in around the Second grade, it was added onto my IEP.

In the second and third grade I attended running Brook Elementary school for part of the school year. They tried to make accommodations such as: allowing me to eat lunch in a separate location, not going to PE music or art class, coming in after arrival and leaving before dismissal.

All the noise from students and teachers talking in class, kids in the hallways, noises from other classrooms such as videos and music, multiple people talking and laughing, announcements and intercom system, furniture or object moving was too painful for me though.

I would come home every day in a lot of pain and have to lay down for hours. I had a lot of absences, and eventually ended up on home and hospital for most of my second and third-grade years.

For third-grade home hospital, they put me in an office building. This worked well and was less painful for me, as I was in a room in part of the building that was mostly empty. In fourth grade, they transferred me to Fulton Elementary school. They had a regional program which they said had only about six students, so they thought it would be quieter.

They did make accommodations such as giving me a shortened day schedule, having adaptive one on one PE, not going to recess music art or the cafeteria.

Going to Fulton though was extremely painful. Although there were only about six students in my class, they had severe behavioral challenges and would often scream and bang on the walls and throw furniture. Attending school every day was a nightmare for me, I was in pain every day. When I got home, I would sleep for hours in my closet.

The pain would linger, and I would still be in pain from school several days later, which resulted in me having a lot of absences. Eventually, the pain became too much, and I was no longer able to continue to attend school for about a month I was just mostly laying in bed.

I also suffered from a setback from my Hyperacusis due to the elevated pain levels and sound exposure over a long period of time. Now even the sound of my refrigerator in the kitchen was painful for me.

They put me on home and hospital instruction in the office building again which went well. I was at least able to go to a place to learn and get my education without it being a painful experience. They again placed me in a room in a part of the building without many people, just me and the teacher.

In fifth grade, they again wanted me to try to return to school. They told us that I would not be in the room with the children who were screaming. Instead they put me in a separate room at school, right next to the music room.

It was very painful for me, and I eventually could no longer continue to attend and ended up on home and hospital at the office building again.

Again, this worked very well for me and I really hoped that they would allow me to continue to stay in the low noise, non-painful learning environment.

Unfortunately though in the sixth grade, they decided to have me go to the Bridges program at the Homewood center. Which is a special-education program with small classes.

They did make accommodations for me such as: allowing me to leave the classroom when it is too noisy, allowing me to transition in the hallways separate from the other students, not going to the cafeteria, or music class or wood shop class, minimizing my time spent in core (an even louder part of the school), creating a special hand gesture I can use with students and staff when it’s too loud, allowing me to leave the classroom when there is movies or music, etc.

Despite all of this attending Homewood is very painful for me. The sounds of students and teachers talking in the hallways, noise from other classrooms, objects moving or falling, bells, walkie-talkies, intercom system, multiple people talking and laughing are very painful.

I am not only in pain while I am at school. I am also in pain after school, on the weekends, and days off. I am now currently in the 10th grade and have been attending Homewood for five years. Although I have managed to attend Homewood, The pain level is intense, and just below intolerable.

I am on unable to do homework after school or do much of anything after school as the pain is very severe. Most of the time I just want to rest and lay down. Its hard for me to get up in the morning and still be in pain from the day before and know that it’s going to get worse when I go to school.

It’s very difficult for me to attend five-day weeks and when there is not a day off, I usually end up being absent one day due to the pain buildup. Despite all of this, they do not want to do home and hospital because it is not a long-term solution due to LRE (least restrictive environment).

I did A presentation about Hyperacusis and made recommendations to the Howard County Department of special education. I was able to get contact information for Dr. Terri Savage director of the Howard County Board of special education, who told me that she would try to implement some of my recommendations before I graduate. These were my recommendations 

While on a state-wide scale I would love to see a hyperacusis school program dedicated to students with hyperacusis. I would like to make some recommendations about what Howard County could do to reduce my pain, and the pain of others like me:

1. Soundproof a room- acoustic panels and or soundproof foam on all walls, soundproof door

2. Teachers that teach me inside the soundproof room rather than me going to them for instruction including related arts

3. Ensure staff have their own classrooms to limit the amount of noise produced when I am trying to learn

4. Add an addition onto the LRE that requires that all students be in an environment that does not cause them physical pain or physical discomfort

5. Implement a county system similar to home and hospital only long term and allowing for students to still have 1-2 peers that are able to accommodate their needs in there specialized learning environment example soundproof room this would not only help students with hyperacusis but also help any students who have conditions where they experience physical pain or physical discomfort from the school environment even with accommodations and modifications

6. Approve distance learning and telepresence devices for Howard County

7. Allow for graduation requirements to be modified for IEP students if it is something that they are unable to do or causes them physical pain or physical discomfort due to their disability even with accommodations and modifications examples woodshop or music

9. Attempt to find and locate any other students in the county who get physical pain from there school environment and could benefit from the accommodations recommended above- this could even be done through a countywide student questionnaire

My mother and I also found a Neuro-ototlaryngologist at Johns Hopkins and made an appointment with her. I reached out to some of the researchers researching pain Hyperacusis at Johns Hopkins and asked them if they would be willing to speak with the doctor. My hope is that if the doctor understands about Hyperacusis she would be willing to sign forms for home and hospital instruction until these recommendations can be implemented.  I really hope that I am able to have a pain-free education before I graduate!