HYPERACUSIS CENTRAL

Justin’s Hyperacusis Story

by | Aug 7, 2023 | Patient Stories | 7 comments

By Justin Andreas

Note: Justin has started a fundraiser for Hyperacusis Research after publishing his testimonial. Please consider sharing with friends and donating if you are able: https://www.facebook.com/donate/155124444273725/998550108259291

Hyperacusis seems to be one of the most misunderstood conditions, even by hyperacusis sufferers themselves. For example, even within the hyperacusis community, we rarely distinguish if we are suffering from loudness hyperacusis or pain hyperacusis (noxacusis). Oftentimes, I catch myself reading a success story, thinking that they probably just had loudness, which might’ve been causing a tinge of nox. It seems that loudness is much easier to recover from. However, if someone has nox like I do, depending on its severity, it’s generally much more difficult to heal from, and also much more susceptible to setbacks.

To this day, after having lived with nox for almost two years, I still find myself questioning what exactly is going on since a lot of my experience doesn’t match up with others. Hence the baffling nature of this condition. Even amongst nox sufferers, the symptoms are so vast. It’s hard to know what route should be taken for treatment. Should I try sound therapy? Medication? More hearing protection? Less hearing protection? Or should I just go into strict time and silence? Sadly, what works for one person doesn’t work for another.

When I first got nox, it was in November of 2021 at a really loud nightclub in Colombia. I remember walking into the nightclub thinking to myself that it was way too loud. But the funny thing about healthy ears is that they often habituate to loud environments, so it doesn’t seem like you’re in danger, especially when there’s no pain involved. Unfortunately, this adjustment doesn’t mean that it’s healthy. Many people get tinnitus this way. As soon as they leave the loud environment, the ringing stands out. For the lucky ones, it goes away within a couple weeks, or at least subsides to a barely noticeable level. This was my story.

Once in a while, I would subject my ears to unfathomable loudness when playing in a band or going to a concert. I would come away with scary tinnitus that would subside pretty quickly. However, this was not the case in Colombia almost two years ago. As soon as I walked in, my ears were telling me to leave. But I felt hitched to this girl that I had just met on a dating app. Ironically, she didn’t even speak English. I didn’t even speak Spanish. It was the stupidest date ever. That’s one reason why I didn’t leave right away. I didn’t know how to communicate to her that my ears were taking a beating. Also, I had parked my motorbike at her house.

Since my date had my motorbike, and we didn’t even speak the same language, I felt chained to the club. It was a dreadful position to be in. Of course, I didn’t know how much damage my ears were taking. Sometimes it felt okay, depending on how close I was to the speaker. Also, when you’re dancing and chatting with people, you aren’t paying attention to your ears as much. But halfway through the night, my right ear “broke.” Or, in more medical terms, it suffered an “overcontraction.” Looking back, this was probably my middle ear muscle, the tensor tympani. Or possibly the stapedius. However, once again, when it comes to nox, it’s hard to know for sure. I haven’t found one knowledgeable ENT. They don’t have a model that can diagnose what’s going on with the middle ear. The best ENTs have offered me are antibiotics.

Regardless, that night in Colombia was the beginning of a bizarre journey. When I left the club, I remember getting into the taxi in disbelief of how loud my tinnitus was. It was so loud that I could barely hear the taxi asking me where I wanted to go. I suspected that I did some serious damage. This type of shrill tinnitus, along with the multiple tones, wasn’t like prior experiences after leaving a concert. It was just too loud and intense. Luckily, it subsided a bit within the coming days. I continued with my trip in Colombia. However, I started having my first experience with nox. I tried going to another loud bar a couple days later, but noticed that it was just too loud for me now. So I bought earplugs to dampen the sound. Knowing what I do today, I should’ve stopped going to bars and nightclubs altogether, even if earplugs dampened the sound. Once you have a degree of nox, you should not risk furthering your injury at all, especially in regards to going to really loud places, with or without earplugs. This is easier said than done, of course.

It’s hard to give up social situations that everybody else can do, unless you’re forced to. Stupidly, I continued going to restaurants, bars, and nightclubs with earplugs in over the coming year. In the interim, I became sensitive to things like clanking dishes and squealing brakes. It should be noted that I also had an ear infection around this time, which spiked my tinnitus. Also, I had gotten the vaccine a couple weeks before my acoustic trauma at the nightclub. And I was coming off of an addiction to benzodiazepines (Xanax). I got COVID as well. All in all, I got sober, the vaccine, acoustic trauma, COVID, and an ear infection within a two month period. I know — it’s almost laughable how much I got caught up in. I have a history of drug addiction which played a part in getting nox, although it’s hard to know how directly it affected me. But I find it interesting that I had just come out of benzo withdrawal when all of this happened.

But if I’m honest, I’d say that the nightclub and the ear infection affected me the most. At first, I was able to hold down a job and continue life with normalcy. But, like many nox sufferers, the chronic burning sensation in my right ear canal was present. I must’ve taken four rounds of antibiotics to treat it. I did whatever the ENTs suggested, desperate, even though I suspected that I didn’t actually have an infection. Luckily, the antibiotics didn’t worsen me, like other nox sufferers have experienced.

However, after taking more and more pain from everyday sounds like clanking dishes, and also stupidly continuing life as normally as I could, I eventually got worse in September of 2022. One night, I turned the page of a book and got a sharp reaction out of my ears. That was scary. I had been reading all kinds of horror stories online that related to this experience. When the tiniest of sounds start causing pain, you’ve definitely become more severe. After that day, I started wearing muffs more, even at my career in auto sales. My boss didn’t have a problem with me selling cars with muffs on. But, looking back, I should’ve quit right away.

The occlusion effect of wearing muffs made my voice sound louder in my head. Not to mention the random squishy sounds in my mouth. Not long after, my own voice started to hurt. Once my voice was no longer tolerable, I had to quit my job. It was totally impractical to wear muffs while selling cars anyway. I was delusional to think that it was tenable. Once again — another mistake on my behalf. I should’ve gotten a job selling insurance from home instead (I’m licensed in insurance). After my own voice started hurting, it was pretty much game over.

I moved in with my mom shortly after. By then, I had to wear muffs anytime I moved my body. Literally. Making my bed, cooking, walking — every little sound caused a reaction. Fortunately, I don’t get that debilitating stabbing pain that some sufferers talk about. I only get light stabbing around my ear canal from sounds above a certain loudness. But my tinnitus reacts to almost anything, along with my middle ear muscles contracting, indicating that I’ve lost tolerance to 99% of everyday sounds, regardless of loudness.

I wish I could tell you that I’ve seen some improvement since getting severe in September of last year. I haven’t. But I haven’t gotten worse either. Such is the befuddling nature of my condition, compared to others who noticeably worsen or improve over the course of weeks or months. I’ve done somewhat of a decent job at protecting my ears as much as possible. More befuddling is that I can still tolerate some steady sounds such as a fan at a low level, and also low frequency meditation music through quality speakers. My strategy this last year has been to expose to those types of sounds, while protecting against all others. I figure that the ears should probably hear something, especially if it’s not painful.

But this strategy has not worked in bettering myself, although I haven’t gotten worse either, which is good. I’ve more or less been the same since last September. Honestly, I’m not sure what I would do if I lost tolerance to things like the fan. It’s a relief being able to take my muffs off in my room and just stare at the TV or meditate in stillness, since even moving my legs can cause a reaction from the rustling of the sheets. Once again — how is it that some of us can tolerate a fan, but not the quiet rustling of the sheets? Insane.

Some say that central sensitization is a problem for nox sufferers. In other words, the brain is overreacting to normally non-painful stimuli. For the life of me, I can’t tell you if this is true. But it strikes me as peculiar that I can’t even open a bottle, yet I can listen to a soothing song at a low level. Also, I find it strange that I don’t get that intense stabbing pain that some report. Apparently, it’s the frequency of a sound that determines how painful or threatening it is.

A few months ago, a door slammed and I had no protection on, but it didn’t hurt as much as I would’ve expected, which could tie into the frequency aspect of this condition. As stated above, the most pain I get from sound is a light stabbing pain around the canal. It’s bizarre that a door slamming can be as painful as flushing a toilet. Hence the gaslighting nature of this injury. It should be noted that I still have that burning pain in the ear canal. But that has subsided quite a bit since onset. You’d think the hyperacusis would’ve receded along with it. But that hasn’t been the case.

So where do I go from here? I was lucky to get on California disability back in January of this year. It’s just enough to pay my bills. But to be frank, I have no idea what I would do without my mom. Many sufferers report that family and friends do not understand us, thinking we’re insane. This hasn’t been the case with my mom. After I showed her a few videos on hyperacusis, she understood immediately. For the most part, she’s quiet and supportive. But the fact is that I’m running out of money since my disability is about to expire. I don’t expect my mom to pay my bills. Lord knows she already has enough financial burdens.

I could theoretically get a job working from home, selling insurance. But this would require talking on the phone a lot, which I’m not sure about. The number one thing that any sufferer must do is avoid getting worse at all costs. It’s just so much harder to come back from any worsening, especially when you get to the point where you’re protecting 24/7. I’m leaning towards going unemployed for a while and just riding out the storm as long as I can under my mom’s roof. It sounds pathetic, I know. But this is the reality for many of us. Severe nox is the most impractical injury ever. The stimuli of sound is everywhere. No matter what we do, it stabs at us. I completely relate to those who have lost hope. That certainly isn’t my attitude in general — although there have been some really dark days. But I completely empathize with those who cannot even shower without pain and do not see how recovery is possible, especially those who are far worse than I am. My heart goes out to you. I cannot imagine how much more difficult things would be if I got worse.

But there have been some positives to my story. After I became severe last year, I found Buddhism. I’ve strongly connected with the Buddhist principles of impermanence and daily meditation. I mentioned earlier that I have a history with drug addiction. It’s a miracle that I’ll be coming up on two years sober in October. The old me would’ve relapsed right away when this condition worsened. Many people report temporary relief from using benzos. If I could moderate my benzo use, you can bet that I’d use them for relief. But I know that once I take one pill, it’ll be hundreds. And with hyperacusis this severe, I’d be dead in the dirt since my addiction takes on ravenous proportions.

So daily Buddhist meditation has allowed me to refocus somewhat, but it doesn’t change the dire reality that stands before me. I’ve gotten quite good at meditating with muffs on, though, despite having to listen to shrieking tinnitus. Meditation goes hand in hand with my predicament. At least for that hour or two a day, I can sit in stillness, channeling gratitude, trying to manifest healing. When I get away from my meditation, I’m more pessimistic. Also, I found the carnivore diet in January of 2022, before I got severe. Carnivore hasn’t resolved or even helped my ear problems directly. But it keeps me away from sugar and junk food (most of the time), which keeps me centered, since my drug addiction manifests itself in other ways, such as compulsive binge eating.

But I’d be lying if I told you that I’m happy-go-lucky all the time. The isolation is unbelievable. Being robbed of your own voice is inhumane. Questioning every sound, every movement, every swallow, every crack of the bone, it’s one of the most physically tormenting injuries a person can get, and also psychologically. Not to mention the endless tinnitus which changes on the regular. 

Sometimes I catch myself scrolling Instagram, seeing quadriplegics out in public, thinking to myself that I have it worse. At least they can communicate with people, right? The problem with nox is that it makes the world inhospitable more or less since sound is everywhere, so it doesn’t allow you to be a part of society or the systems of this world. I know that everyone suffers in life, but nox is a unique situation. This happens to be my struggle. Severe hyperacusis and tinnitus are peak levels of human suffering, a practical joke of sorts. It’s hard to rationalize them as just another form of suffering.

I know that I’m still early on in this journey. Ten months of being severe isn’t that much time. I haven’t really tried that many modalities of healing. I still haven’t done the strict time and silence routine. I haven’t worked with an audiologist that might be able to put me on a solid sound therapy regimen, and there’s a lot of reasons to wonder if that route could hurt me even more, as it has a lot of people in the community. There’s always the round and oval window reinforcement surgery to consider. I could also try another pharmaceutical like Lyrica (I actually tried Clomipramine earlier this year for two months. It didn’t work, but maybe I should’ve stayed on it for longer).

So I just gotta keep trudging away. But it’s easier said than done when you’re stuck in a room all day with muffs on. This injury is extremely limiting. It’s hard to be optimistic when 99% of sounds are intolerable. But I try to use meditation as a way to distract briefly, but it doesn’t change the fact that there’s no cure or treatments for these conditions. I still have my mom and my dogs that are mostly quiet, thankfully. I have a good place to live out here in California. I have a nice, clean room to recover in. I still have my car that I can drive with muffs on. There’s a quiet community pool that I can go to. So there’s still a lot of reasons to be optimistic.

But how can I be more consistent with healing? How can I get more into a routine of daily positive action? Can I learn a new skillset that will help me make money online? Can I get more consistent with my diet, and finally put down the cigarettes for good? Funnily, I was able to quit cigarettes for a year when I got sober this time. Only after my severe onset did I start smoking again. I go on and off. A couple weeks here. A couple weeks there. I know that smoking and binge eating have no place in my recovery from nox. But that’s yet another principle of Buddhist psychology — compassion and forgiveness for myself. Sure, I could’ve done much better to avoid this catastrophe. I sensed that using headphones, going to loud restaurants, and even going to the gym wasn’t a good idea when I was already sensitive to a few sounds, but I did it anyway.

But I mostly forgive myself today. I’m still super early on in this journey and trying to cope emotionally. To be isolated from the world, avoiding the silliest of sounds — not easy. I’m going to have to reach a higher state of consciousness to try to cope. I strive for that during my meditations. Aside from meditation, I spend most my days reading, surfing the internet, taking my dogs out for a quick drive, getting some brief fresh air, stopping by a church to pray silently, watching TV with subtitles, writing a book, mild yoga, going to the spa, and trying to desensitize to non-painful sound. I don’t use the phone much anymore. I only speak to my mom when necessary. The furthest from home that I’ve been was for a family matter in Los Angeles. I haven’t been around groups of people for almost a year. No dating. No friends. No communion. Not much human connection whatsoever.

Honestly, it’s hard to believe that somebody can stay sane like this. It’s one thing to have a disability that limits your mobility. But it’s a whole other ballgame when you can’t even tolerate a human voice. Yet I still find many reasons to smile. Sometimes I just laugh at the absurd nature of my predicament. Of all the stupid things I’ve done — drug addiction, fumbled relationships, burnt bridges, lost jobs, eating until I’m in a coma, chain smoking — it’s the ears that finally got me.

That’s another reason why I find myself smiling a lot. Realistically, someone like me should be dead. I’ve pushed my luck over and over again. But I’m still standing. So there’s hope. With healthy ears, I could pump iron at the gym with the best of them. I could step onto a car lot and outsell everyone. I could start building a career in real estate alongside my mom. I could get back into the program of recovery, helping other addicts find sobriety. So not all is lost.

I’m just cornered right now by the two-headed monster of tinnitus and hyperacusis; an intimidating, unrelenting beast. But somehow I still have an unshakeable faith that things will get better. Hopefully a consistent routine of neural retraining, time and silence, my diet, and meditation will get me where I need to be, and I may need to supplement some additional things as I learn more along the way. 

I cannot tell you how good it feels to meditate on selling cars again. Or being in a relationship. Or surfing the Pacific Ocean. Or traveling. Or laughing alongside my friends. Or just typing on a keyboard without pain. The smallest of things are what nox sufferers dream of doing again one day. For now, I can at least see it happening in my mind.

7 Comments

  1. Supe

    Excellently written story, Justin. You did a good job of detailing just how miserable and senseless this condition is. I hope things can be better someday

    Reply
  2. Marco

    Thanks for sharing your story and helping us to understand your pain and your suffering.
    Meditation might be a good support even if practicing In Those conditions must be so tough.
    I hope research will allow you to heal you and make you achieve all the beautiful dreams you have.

    Reply
  3. PlightoftheMongoose

    Can’t believe we lost him. This just shows you how quickly things can turn for the worse. These conditions need to be recognized for how bad they can get and that they can take your life.

    https://www.hollywoodlanews.com/justin-andreas-dead/

    Reply
  4. Sebastian Cole

    What a wonderful writer Justin was. I am going to miss him dearly. May you no longer suffer Jay. I love you man.

    Reply
  5. S

    Rest in peace, Justin. You were a kind soul.

    Reply
  6. V

    Wow. I saw this on his obituary today: Justin Daniel Andreas passed away on 9/14/2023 due to cardiac arrest, after having suffered from complications with prescribed medicine for a debilitating tinnitus and hyperacusis health condition.

    Reply
    • Rebecca Hill

      I miss my son Justin Daniel Andreas! It hurts so bad! I miss him so much, will I ever recover from this loss? He was loving, handsome, intelligent, personable, extremely literate, enterprising, inspiring, and so much more… My poor dear, he was suffering…in silence. I pray I did enough, I pray I showed him enough that I loved him, expressed enough patience, found out all I could know about him. He is gone!! I realize I need to acknowledge gratitude that he came to live with me the last year of his life. I’m so caught up in how I feel right now, how would it have felt if I hadn’t seen him but a few times that year? I saw him everyday Nov. 2022 to Sept 2023. I would do anything to have him back! No words can describe my misery and confusion that he is gone. I love you Justin! God Bless you my only son! Love you forever, Mom

      Reply

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