HYPERACUSIS CENTRAL

Hanan’s Hyperacusis Story

by | Aug 14, 2023 | Patient Stories | 4 comments

Greetings from Egypt. My name is Hanan and today I’ll talk about my tinnitus and hyperacusis story. Tinnitus is a constant ringing sound that’s heard subjectively by the sufferer, and hyperacusis is an increased sensitivity to sound. It has many subsets, including pain hyperacusis (noxacusis), which is what I have, where hearing sound causes physical pain in my ears — a burning pain or sometimes stabbing. Now, before I share my story, let me start with a rather interesting notion. In March of 2021, I was a healthy medical student. I only had 2.5 years left to graduate and become a doctor. It was my goal to help people and help myself by achieving a career. But now, today, it’s August of 2023 and the exact opposite scenario of my goal has taken hold, one where I can’t complete my dreams due to severe tinnitus and hyperacusis.

My issues are so severe that I’m homebound. I suffer from chronic pain, even in silence. For the life of me, I don’t remember the last time I left the house, as when I do, the sounds are like burning needles stabbing my ears, and worsen me permanently. The exposures to sound have consistently set me back to an even worse baseline of pain. And on top of that, I am tortured by multiple frequencies of a phantom sound that only I can hear, called tinnitus, and it only seems to get louder and louder with no limits whatsoever; an everyday occurrence. With no way to stop this, I’m just going through this constant decline everyday, even though I look normal on the outside. These conditions are invisible ailments. And to make matters even more baffling, the organ that’s giving me all these symptoms looks completely normal upon examination. So I’m not sure if it’s the cochlea itself causing issues or the middle ear, or maybe something else, too. But basically, no doctor can identify what’s wrong with me and some go even further by saying I’m healthy and just a patient who’s complaining.

So how did this happen?

Well, it started with my teenage years. I was an overweight teenager and naturally, I got pressured by my family to lose weight, but I also wanted to get in shape. So I started to work out on a treadmill we had at home. To motivate myself, I used earbuds and listened to music on high volumes. I really enjoyed this as a hobby, too, and that made me stick with it. I did manage to lose a LOT of weight, so in 2018 I was a teenager who had just reached the perfect weight. But that came with awful consequences, as the loud sound from the ear buds was physically damaging my ears and gave me a noise trauma, which resulted in tinnitus. And my extreme weight loss, even though it took 2 years, contributed to me getting a rare ear disorder that most doctors never heard about, called patulous eustachian tube, or PET for short, which I will talk about in great detail in a bit.

But let’s start with the noise-induced damage. When I was listening to music on these earbuds very loudly, every time I finished working out I would get temporary tinnitus. The sound would fizzle away after a few hours. Regardless of the temporary and mild nature of my tinnitus back then, I was still worried about it. So I went to ENT doctors and they ran some tests on me, and they told me my hearing was within normal range, and that the tinnitus is idiopathic. Idiopathic is a medical term which simply means that something is without a known cause. They said there was nothing physically wrong with my ears, and they discharged me with that information. So I — as a reckless teenager and one misguided, too — thought that the worst thing that could happen would be a little hearing loss in my older years. I didn’t know that tinnitus could be permanent or constantly increasing. Such a thing never crossed my mind.

I also asked my friends and family members about the ringing, and they all said that they hear ringing sounds after they come back from a party or use earbuds, and that it’s perfectly normal and fine to experience that. But then, in 2019, something rather bizarre happened. One day, I was talking to my sister in the living room when I suddenly felt a very weird sensation in my left ear. It felt like the sound of my own voice was escaping inside my ear, like my speech and breathing were amplified in a microphone, but inside my ear. This phenomenon is called autophony, which at that time disappeared in about :05 seconds. I didn’t know at the time that autophony meant that I had developed a very rare disorder, one that doctors would keep misdiagnosing for 2 consecutive years, and keep prescribing drugs that would worsen it, such as nasal steroids / decongestants. 

This disorder, which I had mentioned earlier in my story, was the PET. For those who have it, the eustachian tube — the tube that connects your nose to your ear — is abnormally patent or open, and cannot close properly like it’s supposed to. This creates an open passageway between your nose and your ear, which means you hear all the sounds inside your head that you’re normally not supposed to, like your heartbeat, breathing, chewing, and talking. With PET, they are amplified severely, and the air you breathe-in also enters your middle ear, making you breathe through your ear essentially. The reason I had developed this mild form of PET in the first place was related to the extreme weight loss I had endured as a teen, as it had caused the shrinking of fat tissue surrounding the eustachian tube, making it harder to close.

At this point in time, though, the symptoms were extremely mild. I didn’t give them much thought. After developing this bizarre sensation of autophony, a few days later, I continued to do the same things in life. I listened to loud music while on a treadmill. To my shock and dismay this time, the tinnitus didn’t go down at all, though. In fact, I could hear it faintly even when I went outside or to a restaurant, which is a fairly noisy environment. Naturally, I panicked and went back to the ENT clinics where they asked me for an audiogram, but the test showed results that were completely normal. I was told by the audiologist — yet again — that if my hearing tests were normal, it means I don’t have any real physical damage to the auditory nerve, or my ears in general. This type of thinking meant that I was classified as an anxiety patient, even though my anxiety came after the tinnitus became permanent. I did not experience anxiety before the onset of this symptom. But nevertheless, he insisted that the tinnitus was a result of my anxiety and my stress with school studies — not that it was physical damage from a sound injury or medication.

So he referred me to a psychiatrist. He told me I have OCD and gave me anxiety drugs, and told me to not think about these ear symptoms. At that point, though, I realized that earbuds were a bad idea. I stopped using them completely in 2019, as I thought this was the source or exacerbator of my problems. I never wore earbuds or headphones again. Unfortunately, though, the damage was already done, as over the next 2 years my tinnitus kept increasing slowly and progressively. It didn’t go down when my anxiety went down, like the doctor said it would, and my autophony bouts were getting more frequent and more lengthy. I was also getting a thumping sensation called tonic tensor tympani syndrome, or TTTS for short, and crackling in my ears, too, also caused by PET. I would make multiple trips to ENT clinics, only to be told that nasal steroids were something I could try, which I had already tried for a while and discontinued because they hadn’t helped at all. But unbeknownst to me, they had also been worsening my symptoms due to the effect they had on my PET.

For the longest time, I had also mentioned to the multiple doctors that living in a noisy city was a real fear of mine, and that I’d thought about wearing earplugs to protect my ears from traffic or loud restaurants that play music, and that maybe those things had been worsening my tinnitus all along. But they had all told me the same thing: “No, no, no … that’s obsessive. And nobody should live like that. Those are normal, everyday sounds. Avoid wearing earplugs, even if your tinnitus is increasing, as the problem is in your HEAD, not in your actual ear.” At this time, I also had found similar advice on the internet. Many had advised against over-protection or wearing earplugs in regular sound environments, or everyday life.

But dwelling on those past mistakes didn’t change anything. I also tried talking to my family or friends to educate them about my situation, but they dismissed my problems as anxiety or hyper-fixation. So I tried to ignore the constantly increasing tinnitus and autophony bouts, and my ear crackling sounds, too, or tell myself that I’m just making a big deal out of things because that’s what everyone told me. They gaslit me. But I made a big mistake in 2021, one that ruined my life more or less, as it exacerbated everything and kickstarted a downfall. One of my friends asked me to go with her to the cinema. I was kind of apprehensive since I knew the cinema would definitely be loud. Prior to this, I had been consciously turning down requests to go to any such place for the past 2 years. But I thought to myself, it’s not really a concert or a particularly loud event, but unfortunately I misjudged that. And so I went.

The next day, I woke up and the tinnitus in my right ear spiked horribly. It was screaming like a thunderstorm. It was horrid. Now, to add more irony to the situation, the tinnitus spike actually calmed down after 3 weeks. So the cinema wasn’t actually that damaging after all in my case, as my right ear eventually recovered from the spike. But the problem had caused an increase in stress due to the tinnitus spike, so the motivation to go back to the ENT again had been planted in my mind. I didn’t know that the spike would just calm down if I left it alone. I told the doctor about the spike, and I also described my crackling and autophony again, and that I thought it had something to do with the tinnitus. But again, just like every other ENT doctor before him, he prescribed me nasal steroids. But this time, I was so desperate — so eager to try anything that would help — that I decided to try them again, even if they were previously futile. As soon as I took the third dose of this nasal steroid, it was as if my left ear had opened-up completely. 

The previously intermittent PET and autophony issues became permanent, 24/7, in my left ear. Three days after that happened, my permanently PET-inflicted left ear — which had been perfectly fine and unaffected after the cinema — started burning badly. Every time I’d hear something, it would hurt really bad. Unfortunately, my right ear followed the same pattern. It, too, opened permanently and the same thing happened. After 3 days of a permanently opened right eustachian tube, the burning pain began in my right ear as well — a burning hell of bilateral noxacusis. All of this was happening when I was just 20 years old. With every breath I took, the air physically entered my middle ear near my eustachian tube, making me breathe through it. It also sounded like wind blowing because of the now constantly open tube / passage into it. Therefore, with every breath, it burned the inside of my middle ear like crazy. Ever since then, I’ve been cursed with this noxacusis or pain hyperacusis, a type of audio sensitivity which results in noise-induced pain. Every day, I’m baffled by a fact that’s unbelievable: that my ears have somehow paralyzed my life in such horrific ways.

*The reason that nasal steroids and decongestants worsen PET is that they cause the tissues in the nose — surrounding the eustachian tube — to shrink and dry out, which makes the eustachian tube opening wider than it should be and harder to close.

What about my tinnitus, though? Why was it increasing for 2 years?

Apparently, I had a form of tinnitus called reactive tinnitus, which means it reacts or spikes to normal, everyday sounds, including traffic, social gatherings, music in a store, and the common scenes encountered in life. This, in fact, is believed to be a type of hyperacusis. So it wasn’t my anxiety after all, contrary to what I had been told by medical professionals for so long. It was tricky for me to make the connection that sound was the culprit because it was happening at such a slow pace, and that was due to a cumulative effect of exposures rather than having it react immediately after an exposure. The reactions were delayed. Although I had doubted what the professionals repeatedly had said about the nature of my tinnitus for so long, things had happened nonetheless, and the doctors, of course, had always denied that they were wrong. When the noxacusis onset had taken hold in 2021, it had started as mild or moderate and the tinnitus had manifested itself as moderate from the get-go. But eventually, it got so bad that I couldn’t leave my house due to the many wrong decisions that I had made throughout my journey.

What did I do wrong? What made my noxacusis become so severe and disabling?

When I first got noxacusis, my school semester had already been underway for some time. My 3rd year of med school had arrived, even. When this disaster had first happened to me, an immediate idea had come to mind: to isolate and rest in my apartment, and to get away from the university, which undoubtedly would have saved my ears, as sound isolation after the onset of nox fosters the best possible chance for it to heal. I had desperately tried to talk to my family, who I’d also been financially dependant on during all this, and their response, sadly, had been thoroughly apathetic and unflinching: they didn’t even believe me. In fact, they had also mocked my feelings of distress and worry, as if noxacusis were a silly problem, belittling its symptoms. And the doctors had done the same, and my supposed “friends,” too. 

At this time, I had tried looking noxacusis up online and couldn’t find reliable information to show them. Instead, all I had seen was bad advice and misinformation, such as the advice to expose to sound. The constant dismissal and denial of my symptoms by everyone around me had been so strong that it made me doubtful about my own perception of reality, and also what my own body had been telling me — that something was seriously wrong. To other people, I had looked so normal on the outside. And in their eyes, I had just been harboring a negative mentality. They’d tell me to adapt, cope, and attend my med school lectures, and then pressure me so much about taking my exams and having good attendance. 

But anyway, I decided to keep going to med school and take my exams. I’d leave the house with earplugs and earmuffs on, looking like I was going to a construction site. I went through surgery rotations and internal medicine rotations — some of the most stressful periods in med school — while also pushing through this terrible illness, but reached every milestone despite that, without getting any acknowledgment that I was actually fighting this rare condition. The entire process of going to med school — the traffic, lectures, and talking with other people, which were normal sounds for others, but painful to me — was worsening my noxacusis badly; catastrophically, even. But it was a slow process. Even though I had been using earplugs and muffs the whole time, it wasn’t enough. This resulted in my nox becoming unbearable, and I became homebound with severe symptoms in late 2022.

I have one more year of medical school, but I’ll never finish it.

I ruined my life by pushing through this, and won’t even get the degree I worked so hard for and was pressured to obtain. The unsupportive and dismissive nature of my family, friends, and doctors meant the end for me, so I made these horrible mistakes that are truly unmerciful, the ones which ruined my life. I went back to the doctors who misdiagnosed me and updated them about my situation, and they told me they still believe I don’t have PET, and that their advice to expose to sound was correct, and that I was simply non-compliant, anxious, and scared — a woman patient who was at fault for her own approach to this, not theirs. They didn’t even record my case. Instead, they covered it up. They should have recorded it to make sure this mistake would not happen again with a different patient. But they didn’t, even after I discussed with them the research and data I had found about nox and PET. Their response was predictable. “Stay off of the internet,” they said. “My medical degree is more reliable.” 

And of course, I didn’t even get an apology from my family: my parents and siblings who pushed me to this fate. And sadly, they still think I’m being lazy and say I simply have a weak mentality, and that I should leave the house once and for all to overcome this. They believe that I’m trapping myself in the house and making myself depressed because I’m handling this wrong. My friend, who I went to the cinema with, doesn’t talk to me anymore because she just renders me as boring and useless due to the limitations of my illness, and also views me as a negative influence in life. She doesn’t believe the extent of my symptoms could be true. She thinks I’m just mentally weak, just like the others, as if I had and have a choice in this matter. No one believes me because my disorder is so rare.

Today, I am in a very severe state. My reactive tinnitus is worse than ever, with over 6 different frequencies that are constantly playing in my ear and reacting (spiking) to the most ordinary — and inherently unavoidable — sounds, including my own breathing. My noxacusis and reactive tinnitus are so debilitating. They’re not just making me homebound in my early twenties, they’re also torturing me at home. Even in my house, I can’t tolerate most of the basic activities of day-to-day life, like showering or cooking; and even the most simple forms of cooking, like frying an egg, for example. When nox is severe, these things become impossible to do. Even taking a walk on my carpet is painful due to the sound of my footsteps. Eating and breathing often cause burning pain. A person’s ultimate form of self-expression is their own voice. Well, I’ve lost that, unfortunately. I’m unable to speak, especially with the amplification caused by autophony. I communicate solely through text. Another thing I mourn are my hobbies. I have lost my guitar, which I loved to play. I have lost the beauty and the art of music. I have lost my gaming hobby, which I was so passionate about for years. Even if I play games on silent mode, the sounds of the controller buttons being pressed hit my ears in shockwaves.

In the heat of the summer, it’s impossible to turn the AC on or the fan, as the constant background noise aggravates my symptoms in horrifying ways. So I have to just live with the humidity and the heat — no way to relieve it; no way to simply push through the pain to achieve those activities, as pushing through the pain keeps escalating my symptoms to new levels of hell, and plunges me into a worse baseline of increased auditory sensitivity, along with an increased loudness of the multiple tones of tinnitus that progressively worsen and have absolutely no limit to how much they can worsen. So desperate efforts — which consist of isolating myself from all sounds by staying in my room — have played out thoroughly. But it’s such an oppressive state to be in. I feel trapped.

Every day, I try so hard to be careful, but then the sound of my neighbor’s AC unit in the summer hurts me, a sound so faint that other people wouldn’t even notice it. It causes burning in my ears. And even in complete silence, my own breathing — due to my PET issues — sounds so loud like the wind, where every breath I take will inevitably enter my middle ear and spike my symptoms of tinnitus and pain. And the prolonged stress of these conditions has also contributed to disorders in other parts of my body, including my eyes, which have been tremendously strained from having almost no other activities available for my homebound self besides staring at my laptop and phone screen. A disorder called visual snow, which seems to be a somewhat repetitive occurrence amongst the severe tinnitus and hyperacusis sufferers, causes patients to see static along their field of vision, and also have photosensitive eyes.

There’s so much about the ears that we don’t know yet or haven’t figured out. My life could have been saved if just one person had told me to protect my ears from all this, instead of gaslighting me and mocking me. If they would have believed me, I could have saved my life. So please DO listen to what your body is saying. Don’t let others ridicule and decide what you must feel. Put your health and well-being first, as it’s your life and your body, where ultimately, you have to live with it. It’s far more precious than any job, career, school, or even a relationship with someone you love or consider a friend or family member. And if someone you love is suffering from tinnitus or hyperacusis, please try to help them when they need it, as the smallest accommodations mean the world to them.

4 Comments

  1. Scott

    Thank you for sharing your story Hanan. You are extremely brave. It is a shame that you were unable to finish medical school, as we need out-of-the-box thinkers like you in the medical field — especially in ear medicine.

    I hope you are somehow able to heal and reclaim your life. I’m so sorry for all the adversity you have had to face from doctors, family and friends.

    Reply
  2. Marco

    Thank you for this needed testimony. It is necessary to write about this plague.
    I truly admire your courage and your determination. Keep on Talking and writing about this disease.
    I hope research will find a solution so That you become a doctor.

    Take care

    Reply
  3. Justin

    There is nothing left to do but distract and pray when you’re this severe. Hopefully you can make it to the winter, Hanan, and get some relief, even if it’s just from the heat. You’re still young and can heal from this.

    Reply
  4. Rebecca Dand

    There is a p.e.t and ttts group on Facebook. Have you found them ,… there is a doctor ( I forget the details ) that helps patients like you …… he’s in USA
    I’m so sorry to read your story. I struggle as well but no where near this bad. No where close.
    I can try to find that doctors name ?
    Maybe you already have done all that
    Xo
    Hoping for improvement for you
    ❤️

    Reply

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