HYPERACUSIS CENTRAL

Brian’s Hyperacusis Story

by | May 6, 2022 | Patient Stories, Video Stories, Videos | 13 comments

Brian filming in his room

Hey everybody. I wanted to make this to warn anybody with mild or moderate noxacusis/ear pain or even just hyperacusis. I am also making this post for awareness to help others with this condition. I think this condition gets seriously undermined, and if this helps one other person convince friends and family this exists then it’s a win.

Quick background so you get an idea: I had mild hyperacusis and tinnitus in my right ear for many years. Hyperacusis got worse and I developed bilateral distortions from a heavy deadlift with earplugs in. I was not careful with all this ear damage and did not wear my earplugs in my delivery van and got in an accident.

Front airbag deployed, this was the beginning of my nightmare. Number 1, if you have any tinnitus, hyperacusis, or any ear problems, I don’t care what anybody tells you, wear hearing protection in your car at all times. I read some people online said “oh you need to hear, and the odds of an accident are unlikely.”

I thought the same thing… But now I know driving a car without earplugs is like holding a loaded gun to your head if you’re a tinnitus or hyperacusis sufferer.

I was taken to a hospital in an ambulance to get checked out, and of course all I cared about was my ears. I hopped on Prednisone right away which made my ears feel so much better. Even after the car accident my hearing recovered and I still can hear in both ears perfectly up to 16 kHz and have perfect speech-in-noise word recognition.

After an acoustic trauma it is extremely important that you protect your ears like a maniac for many months after. I was not careful enough. After two weeks I decided to go back to the gym. I was eating with family and I was blocked in the driveway so I had my windows down trying to see to back out. My car has high performance brakes that always
squeal. That one squeal was the final nail in the coffin for my left ear. That was the trigger for this catastrophic pain.

Ever since that day the ear pain in my left ear has only progressively gotten worse and worse. It started with me only getting pain from high pitch squeals, from cars and doors, then as time went by earplugs stopped working, the sound started to go right through. I decided to give up my career, I made good money but my job was just too loud to continue even with earplugs in all day. I was truly happy before the car accident, I was suffering from ear problems but it was manageable.

I was a sales manager and was soon going to take over my parents shop, and had many other side hustles. I realized that noxacusis can be aggressive for some people so I stopped going to a lot of places to prevent worsening. I stopped going to restaurants, bars, even going to friends’ houses, yet I still got worse. The pain started coming from my own voice, because I had bad loudness hyperacusis from my ear injury from the deadlift accident, it would trigger the noxacusis. In June of 2021, I completely gave up everything, but luckily could still play video games and watch TV without pain or discomfort.

As time went on I had to completely stop working out because it was making my loudness hyperacusis even worse along with the distortions. Not being able to workout that was keeping the noxacusis at bay definitely sucked. A few more surprise noises and squeals I was exposed to made me become full on hermit. Around August, TV started triggering my noxacusis, and other noises such as my own voice, others’ voices, dishes, squeaking cabinets, anything really. I started seeing a therapist close by for severe depression, and did not leave the house for anything other than dinner at my parents’, 10 houses down , and I always kept my earmuffs on and ate in the other room.

The noxacusis started getting so aggressive that squealing brakes from the mail men and work trucks outside my house started triggering it. This is when the real pain started. Before it was stabbing followed by aching that lasted for a few hours. Now it’s so bad all it takes to set it off is one little squeal from a closet door or a truck outside and I
am in so much pain sometimes I am throwing up and can’t function for days. This was in my left ear. And believe me when I say this is extreme pain, I am no pushover. I would gladly give up an arm or a leg in a heartbeat. This pain is truly unlike any pain I thought the human body could ever experience. There pain like losing a limb, then there’s this. I mean I guarantee I will never deal with anything more painful in my entire life. My entire life I have sucked up injuries, pushed through many things, always avoided a doctor unless it was absolute necessary. If there was any good option to treat this I would of done it by now. If any other part of my body gave me this many issues I would have it removed or amputated. The inner ear is extremely hard to reach and removing it is almost impossible. It’s extremely rare cases like mine happen, but when it does you are pretty much screwed. Most of the population gets stuck with only hearing loss and the worst most get is moderate tinnitus. Extreme pain from every noise just barely ever happens to anybody.

I was always going for walks at night with my mom to help get my mind off things. We would walk on a golf course, but the street noise eventually pissed off my good ear, even with earmuffs on. Before this my tinnitus was moderate and never bothered me, now my tinnitus is pretty loud and get instantly louder from almost any noise at all, my
noxacusis is so bad it reacts to cars driving by my house. Before this severe worsening I was miserable but not suffering for the past few months.

I played video games on mute and go on my phone, take long showers and go to my parents for dinner and have a walk every day. It was better than nothing. I should have been thankful, no outside noise bothered me, if it did, earmuffs would do the trick. Now with earmuffs on any vibrations go through my walls and hurt my ears. I have to wake up at 6 am every day to be ready to have my earmuffs on and run around the house all day to find quiet with all the lawn workers and street noise. I can no longer go for walks because every time I do even at 1 am I get blasted with airplanes flying over or birds chirping in my ears.

Sound desensitization is one of the main things that come up for hyperacusis treatment. Believe me I have tried many times to desensitize my ears because it seemed like the right thing to do and it makes sense. I almost cured my loudness hyperacusis in 2 months of sitting next to a fan 24/7 and sleeping with background noise. I was working with an audiologist. I pushed to far and started getting aching pain from the fan and kept pushing and pushing through the pain thinking it was part of the process. I woke up one day in severe pain and that’s what made me go from severe to catastrophic. True pain hyperacusis does not improve from more sound because it is an overstimulated nerve in the inner ear. It’s called a type 2 neuron. This nerve connects to outer hair cells, it was newly discovered as a pain receptor that sends pain signals to keep us from damaging our ears more. For the unlucky few they never shut off leaving a Person in severe pain from noise. This explains why sound therapy does not work for true pain hyperacusis. If a nerve is pissed off are you gonna piss it off some more? No absolutely not your gonna rest it. There are more research articles talking about the differences between pain and loudness hyperacusis because people get very confused. There are positive results of people “curing their pain” from sound therapy, but in reality, they just recovered with time naturally or got lucky because the type 2 nerve finally shut off. Then there’s all of these articles about hyperacusis all over the internet, downplaying this condition saying sound therapy helps everybody, and if it doesn’t help you, it’s because your negative and don’t believe in the treatment. Then there’s all these people with mild cases running around saying their cured, then that makes doctors think everybody just has to be positive, and desensitize, so when people go in and need serious help for horrible chronic pain, we are taken as a joke. Think about any other condition let’s think logically. You break your leg, are doctors gonna tell you you must walk on it more for it to get better? The longer you stay off it the worse it’s gonna get? No. You herniate a disc in your back, should you lift more to try and treat it? No. The ears are the only organ in the body that are truly taken as a joke to most professionals, and people in general. It is the only organ that supposedly, the only way to treat the damage is with more noise which is the only reason why you have hyperacusis in the first place, from noise. The issue is, professionals need to be able to differentiate between different types of hyperacusis. Because like I said some cases of loudness hyperacusis like mine, it was a brain issue caused by hearing damage. It helped. But if the issue lies within the cochlea, especially nerve pain, it will definitely not work. I have noticed doctors that keep up with more current research are starting to realized this.

I am truly miserable, depressed, I mourn every single day, and miss my old life terribly. I am a tough person inside and out but having severe noxacusis, severe hyperacusis, moderate severe tinnitus, and severe distortions, has been worse than breaking every bone in my body. I have never been depressed in my life before this. But trust me this is not normal suffering. If I do improve, it Will be extremely difficult because all it takes to set off severe pain is a bird chirping outside my house, I will definitely have PTSD for the rest of my life. I am only 23. And I lived happily with mild tinnitus and hyperacusis for 4 years until this. Pain medicine usually does not work to well with this this condition, I have tried a few medications, they pretty much trick the brain into thinking I’m not in pain, but I am further irritating the nerve and wouldn’t realize it thinking I was getting better . When I come off the meds I’m worse, or my tinnitus would get really bad. Taking pain meds is just not an option anymore. So my pain can be described as getting a knife shoved into my ears, an open wound with rubbing alcohol being dumped in, flossing my ears with razor wire. If this pain was anywhere else on my body it would still suck but not be as severe, inner ear nerve pain, In my case, can be one of the most painful conditions on the planet. This is because the pain just never goes away where it’s located, and to make the condition horribly worse all it takes is a little stupid noise. Noise cuts right through double hearing protection so wearing hearing protection does not solve my issues. I have never heard of a condition that is so easy to worsen. I didn’t understand the magnitude of my pain until I was stung by dozens of bees in my backyard, sat there and laughed, went back inside like nothing happened. I stuck a kitchen knife through my hand and looked at it and laughed because the pain was so weak and barely bothered me. There’s some pretty painful things that happen to people but things are greatly changed when it becomes chronic and never goes away, especially when there is 0 treatments available for it. I know quite a few people with chronic pain, fortunately all of them can still leave the house and do basic things, this condition does not allow you to live a normal life or anything close or it will aggressively worsen.

My main point for any mild tinnitus sufferer or mild hyperacusis suffer out there reading this, please for the love of god protect your ears so you don’t have the same fate as me. Wear earplugs in loud places, in the car, and when needed in any noisy environments. I don’t know what my future looks like but this advice would have saved my life. I
am trying to stay strong hoping these regenerative medicines will give me and others hope in the upcoming years so we can get somewhat of a life back.

This suffering and agony has really opened my eyes. I came from a well off family, had a lot of friends, had a great job
and future and did not appreciate it enough. If you are able to go out and have fun and live life, enjoy every second till your last. Love your family, love your friends, don’t hold grudges. Be nice to people, and help others, make the world a better place. Prevent this nightmare from happening. If you develop noxacusis, stop it cold in its tracks before it gets worse because it can and it will. Some people are worse in the beginning and take a long time but do recover to a certain point. Some people like me only get worse from every setback. Hopefully I get lucky and do improve. I will have to spend a very long time inside my house if I have any chance of improvement. This could take as long as 5 years just sitting in my house in Silence. Getting back to a normal life is out of the question for now unfortunately no matter if I believe it or not

Luckily my friends and family, are very supportive, I truly could not do it without them. They are everything to me. There are some people fighting this battle alone with nobody to have their back. Some of their friends or family say its mental problems when indeed it’s physical. Many people have reached out to me asking how I’m doing, I appreciate all of you. I cannot sit here and say this is the worst thing ever because it’s not. Some of my friends lost their lives, or others I went to high school with are disabled unable to move in a wheelchair. There can always be worse situations. Posting this on my social was very difficult, because I’ve never been one to talk about things I’m going through on social media. I am not trying to be negative, I am trying to explain that this condition is very real and can change one’s life forever.

Thank you for reading this, I hope any newbies take my advice or anybody else who needs it.

Brian

To see Brian’s video story, visit our YouTube channel. Closed captioning included.

13 Comments

  1. Anonymous

    Thankyou for sharing your story I feel you hugs ❤️If you ever want to chat email me at Kaleidoscope78@gmail.com

    Reply
  2. Anonymous

    "have fun and live life, enjoy every second till your last. Love your family, love your friends" Oh yes you're right, but for a lot of people we don't understand that untill everything goes wrong… Take care

    Reply
  3. Anonymous

    Thanks for your post. I started out with mild loudness hyperacusis and a friend who knew about my condition invited me to his birthday gathering on a Sunday afternoon at a venue that I never heard of.

    I was truly betrayed by this individual who had read extensively about my condition and knew I was avoiding noise. When I arrived at his party on a Sunday afternoon it was a bar and the music was loud on my arrival and I was put under pressure to stay. I left the venue after 20 minutes but it was too late and I had tipped over into severe pain hyperacusis. I can totally relate to what you’re saying because prior to that I had lived with mild Hyperacusis and was living a normal life. And when you have mild loudness hyperacusis you don’t understand how vulnerable you are and how catastrophic one mistake will be. And no one can ever imagine what severe pain hyperacusis is. Had I known I would’ve left that gathering within a minute regardless of the pressure to stay.

    It was a total betrayal by this individual and of course I cut him off.

    I wear Howard Leight 30 dB reduction foam earplugs whenever I leave the house and whenever I drive. When I go to a shopping mall I have to add on Sony headphones as well as ear protection only. This condition is hell. It’s worse than being deaf it’s worse than fibromyalgia because it is difficult to participate in society when sound becomes pain.

    I am able to go for a walk every day in the park for half an hour with foam earplugs and Sony headphones.

    Could you please tell me what pain medication you have tried? Nortriptyline? Amitriptyline? Did it cause improvement at all?

    Reply
  4. Anonymous

    Thanks I appreciate it a lot ❤️

    -Brian

    Reply
  5. Anonymous

    Exactly that’s the case with everybody we go on living our normal lives and when it all goes wrong that’s when we say live every day till your last.

    -Brian

    Reply
  6. Anonymous

    Hey I’m sorry you got tipper over, your right this condition is worse than a lot of things. It’s something only hyperacusis sufferers can understand. I hope you improve with time. I only leave the house twice a week for acupuncture, I still get pain through foam earplugs and peltors. My case is extremely aggressive and has only gotten worse. My pain never stops it’s when it bumps up to a 9 or 10 on the pain scale is when I’m really suffering. My ears hate medication, almost everything I’ve tried makes my tinnitus much worse, if I could take hard pain killers that would make my quality of life better but Realized my tinnitus can cross over to severe very quick too.

    I would like to try cymbalta there has been people claiming it helps them, some muscle relaxers if their pain is middle ear, and some said those two drugs you mentioned helps. Only thing that has helped me this entire time is acupuncture and running at 3am. It’s extremely difficult to pull this off but if i go a few weeks with no triggering noises and can manage those two things I had a times I felt a little healing. Unfortunately all it takes is a squeaking door, bird Chirp or a noise that’s not to loud at all to re trigger the nerve pain. I have a few things on my list to try I f they help I will post about them either on tinnitus talk, hearing science discord, or Facebook.

    Hang in there we gotta take this day by day and hope one day we will get relief 🙏🏼🙏🏼

    Reply
  7. Anonymous

    Omarscris@yahoo.com that’s my email I just went to a “hyperacusis specialist” and she forced me to take off my ear plugs to take a hearing test. I told her several times I was not comfortable doing one. This was a high frequency test. Everything came back normal .. ofcourse.. and a day later I got a bad set back. This was last week. I’m here recovering extremely slowly. My tip to readers. Don’t let a doc force u to do something you’re not comfortable even if they’re “specialized” in your condition

    Reply
  8. Anonymous

    Hi Brian,

    Thank you for sharing this story. You are a brave good man. We need to work hard to spread awareness. Its Lex, fellow H sufferer.

    Reply
  9. Anonymous

    again, marvelous writing in the narrative medicine tradition. the frustration and pain is vividly communicated. should be required reading for student physicians learning about ENT issues. i'm so sorry for your distress but encourage you to seek publication of this essay elsewhere.

    Reply
  10. Anonymous

    supervaluable advice about not letting the so called experts push one into a situation that intuition predicts will end poorly. thank you. you are the expert about YOU.

    Reply
  11. Anonymous

    try Norflex a skeletal muscle relaxer, the pain makes your muscles tense to protect that area, that squeezes the nerves that makes the muscle tense more. Its stuck in a loop squeezing your ear organs making sound hurt. Its stopped all the pain for me, I'm now getting physio watson headache technique, to loosen up C1/C2 to take some of the pressure off the nerves. All Im left with is a burning feeling above the ear that goes with tension and if the norflex is wearing off.

    Reply
    • Anon

      Hey! How are you now?

      Reply
  12. Anonymous

    Thank you so much for sharing your story. Knowing you aren't alone in the battle is enough to keep going sometimes. I pray there will be better options for those of us still suffering.

    Reply

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