I'm Living the Movie "A Quiet Place"

So I have had tinnitus my whole life, as a little kid I just thought that's the way the world sounded. I would make comments to my parents about the pitches changing, or about the pressure in my ears would suddenly get very intense and then my hearing get muffled. These didn't concern my parents too much; my grandmother had tinnitus, every time I went to her place she was blaring Judge Judy or NCIS to drown it out because she said it made her "crazy." We figured it was genetic, we moved on.

We started to get worried when I was 13. The pain and extreme ringing resulting from acoustic traumas like hunting trips and slamming lockers was getting worse and lasting longer. I went to see an ENT and he informed me since there was no probable cause it must be genetic, and to get over it. I believed him and I tried.

Fast forward and now I'm 18. I'm wearing $200 custom made earplugs as I type this because the clicking of the keys is too loud, it hurts. Not just an "ow, ok that's uncomfortable and I wish it would stop" but and actual world shaking pain that is destroying my life. I have days that the pain is so bad I'm rendered completely mute because my own voice is too loud to handle. They're becoming more frequent and they're lasting longer. My tinnitus is so loud that's all I can ever hear and I'll go all day never hearing anything else besides the blasted ringing and sirens and whooshing and my heartbeat. I have to stop now because how do you describe a lifetime torn between the pain of noise and the insanity of quiet?

So, to my title. I love the movie A Quiet Place. If you've never seen it, it's about a family trying to survive in the apocalyptic world overtaken by monsters that hunt purely by sound. The characters must survive in silence. I find it very ironic I only now thought of the connection when seeing the movie today. I am living in this movie. There is a monster out there and it hunts by sound. And I don't know if its name is hyperacusis or migraines or whatever else my doctors can't think of. I can't help but bitterly laugh thinking about scenes of the characters tip toeing around, carefully picking up and putting things down, and moving in slow motion. That is my life. A wooden rod leaned against a wall fell onto a hardwood floor in a silent kitchen and I curled into a ball and sobbed. A dog started barking in the early morning when I forgot to put in my ear plugs before leaving my room and I ran back as quick and silently as I could. I do dishes and take hours longer than anyone every should because every plate must be slid silently into place.

Oh but only if it was only sound. Except my monster finds me in silence too. I woke up this morning and started thinking about what I'd make for breakfast when a sharp, stabbing pain bore a hole straight through my right ear drum. I've never found a doctor that could explain these pain attacks to me. This current one is lasting hours. Sometimes it's only for a moment, sometimes a few minutes, and - a few times in my life - a couple weeks.

This is my first post and honestly, I really don't even know why I'm on here. I don't even know if I'm interested in reading other people's posts though I mainly suspect it's because reading less extreme cases makes me jealous and I hate that. Maybe just silently screaming my plight into the void will somehow take a load off my shoulders. Or maybe one person out there will unknowingly relate to me and that makes it bearable. Here's to hoping.

-Tavia

 

Hi Tavia,

As a fellow hyperacusis/tinnitus sufferer I came to say *hugs* and I'm so sorry you're also struggling so much with this. You're definitely not alone, and I am always here if you need support or just someone to chat with.

I can totally relate with reading other people's posts and feeling jealous. When I first came here, my main concern was tinnitus. I now 100% have hyperacusis, visual snow, some weird neurological stuff going on in my face on top of other stuff, so while those tinnitus success stories were helpful in the early days, they just make me feel sad now.

As for your sharp ear pain, have you ever spoken with a neurologist? On my quest for answers, I started looking at support groups for trigeminal neuralgia and came across a condition called Geniculate neuralgia. Interestingly, many on these tn support groups speak of deep, sharp ear aches, so the fact that these are happening even in silence for you makes me think you may have something else going on that could even be unrelated to tinnitus & hyperacusis.

 

Hi Orion’s,

I really appreciate both your sentiment and suggestions. I am waiting for neurologists in my area to become available, but I have made notes of your suggestions and have them at the top of my list to show to my doctor.

I wanted to say, I’ve seen others of your posts, and dang girl, you’ve got quite the load on your shoulders. I appreciate you reaching out a hand, just goes to show you’re the kind that won’t be crushed. Maybe I’m just biased, but I just think strength and kindness go hand in hand.

 

Hi Orions,

I think about you a lot. Trying to grab you attention. I wish I could send you strength, I would give you all of mine this very second if I could, you deserve it. I know that words aren't going to fix anything, but just know that I read your posts and feel so much hurt reading them that I wish I could take your pain.

 

Thank you so much for your support & kind words! I’m amazed at how much you’ve been through and how you’ve found the strength to keep going, especially at 18! I hope things improve for you greatly and you find a doctor who is willing to help. This condition is insane and it doesn't help that so little is known about the ears/ear pain.

 

Guys, it is so hard having to be so tough all of the time.
I only have so much in me every day, so much I can tolerate.
And it's so frustrating!

I don't want to be handicapped and sit at home so I go to walmart but I have to run away when employees start throwing boxes off of shelves. Or I just have to leave because the intercom system is too much.

And I'm at a dinner party and I want to talk to everyone so I have to decide if they're worth the pain. Imagine that, looking at the people you love and deciding if a relationship with them is worth it or not. Am I strong enough to tolerate pain to spend time with friends and family? Am I strong enough to tolerate spending time with my little siblings and have relationships with them? Why do I even have to be so strong all the time?

The sound of my own foot falls is too loud, it pounds in my ears. I've learned to walk silently, rolling on the balls off my feet. The problem is, I'm now having problems with my ankles and knees because I walk weird.

The only time I feel anything, is when I go sit back in thicket of box elder trees where the creek runs through. I cleared a spot where the sun shines through - I live out there. It's the only place that I can sometimes feel peace. But most of the time, I just feel nothing. Absolutely nothing. I don't want to do anything. I'm not hungry most of the time - I'm losing weight- not tired, not interested in anything. It's like everything has stopped. It's me, the pain, the ringing, the flashing lights, and the nothing. I just need something, anything to change, and honestly I don't care what it is. I want the pain to stop. I don't want to be alone. I want to be able to go one day not worrying about my ears.

I want to be happy.
I just want to be happy.

 

I tried to sell my viola yesterday. I found out how much it was worth, and sat down to clean it up and take pictures. And I just lost it. I already had done the same for my electric guitar, I don't know if the acoustic is next. I feel like I'm mourning the girl I used to be, like I'm giving up what I was, my whole identity.

So I put the viola back, I just can't sell it. If I do, I'll never get that part of me back.
But I can't look at it anymore.

For months it's sat out in my room, a stubborn reminder that we were going to figure out what was wrong with me and I was going to be healed.

Well guess what, that's not going to happen. This is something I'm going to have to get through.
So the viola and the electric guitar are going under my bed and I'm going to bury them with the corps of the girl I used to be. The girl who loved to go dirt biking and try new things but is confined to her room in silence. The girl who could talk your ear off for hours but now is rendered nearly mute by the end of the day. The girl who had such a beautiful future, but is so scared she's going to end up stuck here trapped in this house and this body. The girl who wanted to be happy, but is facing a reality of misery.

It's like I died, but this is much worse