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HopeIsTheOnlyOption

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Posts: 5
Reply with quote  #1 

What's up everyone! I just discovered this forum and decided to join to see if I could maybe find some ideas for the ear predicament that I'm currently having.

First off, it's a long read. If you are busy or have something you need to do, it's cool.

I have hearing issue in my left ear where everything sounds fine until a moderate volume... say around 73-78 dB then after that my ear starts to painfully distort. All i really hear when there is distortion is a sharp painful sine wave around 1100hz. Sounds with a quick attack are the worst (ex. Someone talking loudly or yelling near my ear or in the same room as me, a trumpet, an accelerating motorcycle, things like that) and sounds with higher frequencies distort easier as well. I've had this problem now for around 3 yrs and the problem seems to be stable or potentially getting slightly worse, but at a very slow rate. I've been to over 5 ent's in my state and they all have been nice but pretty clueless on what the problem could be. I've had an MRI and Catscan that came back with no answers. Right now, an ENT put me on Hydrochlorothiazide which is a high blood med because he thinks there is fluid buildup in my middle ear. However, it isn't working (and I'm getting tired of peeing every 10 minutes! lol).

I don't recall ever damaging my ear in a way that would cause this distortion problem. A stick from a bush when I was doing yardwork went in my ear in around 2012-2013 and there was some blood but I don't think it was my eardrum bleeding just the ear canal. Anyways, I went to the doc and they said it was fine. I remember going to a concert sometime around a few months after that and had no hearing issues. However, I did get some bad concussions from bike jumps a little after that... maybe that's the cause somehow?

Having this issue has completely ruined my life. There hasn't been a day in over two years where I haven't thought about or felt pain from my ear. I'm currently 19 and a college student in Asheville, NC. My true goal and aspiration in life is to be able to be a musician (don't care if its a career or not ... just want to be able to perform and record) and my ear stops me from that...even with earplugs(it makes my voice louder in my head and still distorts). I can still practice singing to an extent, but any high notes will distort, which is pretty limiting. Plus I need to be in a room without walls that are very reflective because that will amplify the problem.

The only thing that gives me some relief is the valsalva maneuver (plugging your nose and blowing) but that only gives relief for around 5-10 seconds. For those seconds the problem goes away 90%. So that made me think the problem could be Eustachian tube related... maybe mild Patulous Eustachian Tube.... but all ENT's don't think the Eustachian tube is a possibility. I am completely clueless on how to go about fixing this problem now and I feel that I can't live my life dealing with it. I have been a person who has always been independent in living my life and solving any problems I have and I have run into a battle that is seemingly endless and it brings me down further every day. People see me and ask why I always bail on them for things like concerts, parties, bars, etc but they don't understand. That has left me fairly lonely in college... luckily I've had a tight group of friends since HS that i'm still good friends with that understand my problem. My goal in life has simply become to be normal and be able to enjoy my life. In reality, I still have try to have fun every day by getting outside, playing sports, and practicing music/music prod. but it is hard when you have an extremely annoying and painful issue that follows you everywhere you go. 

I found someone with similar issues online who suggested going to the chiropractor and getting something called atlas orthogonal. Quick summary- they adjust your vertabrae and apparently that fixes common ailments. This seemed like a logical solution because their is a lump behind my left ear that is not behind my right ear (I told my ENT's about this and they said my vertebrae stuck out more and it was normal) I went to an Atlas Orthogonal specialist. I went to him a few times before I figured out that he had no idea what he was doing. He wouldn't give me a general set plan of how many visits that it may take after ensuring me that he could fix my problem (don't worry I didn't get my hopes up but I wanted to). Long story short....he was a complete nutcase and was the most unprofessional adult I have dealt with in my entire life. This was in February so for about a month after I tried to ignore any thought of my hearing problems because it would send me a wave of depression that would last for days. However, ignoring the problem isn't going to fix it. So, I haven't completely eliminated Atlas Orthogonal as a potential treatment but my insurance doesn't pay at all and it appears the Chiropractor business is one that is set on profitability and keeping return customers rather than customer well-being. 

Thankfully, my Dad currently has a fairly well-paying job and he is willing to support me on whatever expense my ear takes to fix. So finances aren't too much of issue if there is a treatment that insurance won't cover.

 
So now i'm here and searching for answers... anything at all. Medicine, surgery, you name it. Do you have something you want to get off your chest about your hearing issues? I'm down to listen and give my advice. I know how hard it is to have a problem that is invisible and people think you are completely over-exaggerating. They don't know how it feels to be afraid or angry because you can't do normal things like a normal person does. 

Thanks everyone and have I wish you all good luck.

Rick C

0
Aplomado

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Posts: 711
Reply with quote  #2 

Hello Rick,

I would recommend going to an audiologist trained in Tinnitus Retraining Therapy and get evaluated with your loudness discomfort levels to see if you have hyperacusis.  Both loud noises and head injuries can cause hyperacusis, though loud noises are the most common cause.  My hyperacusis came on slowly after hearing a gunshot.

If you do have hyperacusis, it may treatable with sound therapy.  Mine is.

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Madmaggot

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Posts: 26
Reply with quote  #3 
I'd suggest a three dimensional scan of your head to see the whole skull - the bones not the brain like an MRI. I suffered for seven years with similar to what you're experiencing but with many more symptoms I don't have time to list or bore you with but I'll mention the worst ones. I had a tinnitus that sounded like a Geiger counter going off in my left ear on and off all day and night and it would shake my eyeballs up and down, I had trouble walking or keeping food down due to this. I was bedridden for quite a few months til I,learned to function while all this was going on. Doctors decided I had MS and I had CT scans of my head and MRI of the brain and spine three times! Finally after wisdom teeth removal and problems found with my teeth I accidentally stumbled on a dentist who did a scan of my head and showed me on his computer. He made a TMJ splint for me and in three weeks of wearing in almost all my symptoms disappeared! After seven years of living hell I cannot explain how wonderful this is! I had no idea and my dentist had no idea it would do anything for my bizarre symptoms which doctors decided I was imagining!!! The bones of my skull and especially my jaw are deformed, we don't know exactly why the splint has cured my symptoms and where the X act problem was coming from but all I know is that I have been resurrected. If you can find a dentist or a maxillofacial surgeon who can investigate your had bones perhaps you'll find an answer.
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HopeIsTheOnlyOption

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Posts: 5
Reply with quote  #4 
Hi Madmaggot, thanks for the response! I'll definitely look into seeing a dentist to investigate my jaw area. My messed up ear clicks when i'm talking so there is a good chance that I have jaw issues. Did your ear distort as volume increased as well? Suprisingly, I only have mild tinnitus that isn't loud enough to bother me unless it's really quiet.
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