FLUCTUATING HEARING!

AshB

New Member
Hey guys!
So to give a bit of background:
When I was an 14 years old I had an ear infection, so I went to an ear specialist that syringed my ear. They actually got bacteria out of my ear and gave me some drops to help (can't remember what it was exactly). My ears were good for a bit, but then I realized that my hearing was declining in my left ear. At the age of 16, I lost my hearing completed in that ear. Around that time, I went to the audiologist for the first time and they could not find the cause to my hearing loss. What was strange is that when they looked in my ear they saw nothing irregular (not sure if that's normal for persons with hearing loss). Anyways, after a while my hearing in my right ear began declining also. I thought I was going to be deaf completely, but it remained partial for the time being. After many tests, I eventually got a hearing aid, and I was supposed to be evaluated for cochlear implants, but it was too expensive. Around the age of 18 (I think), my right ear randomly began to fluctuate. I thought it was because of allergies/allergens. One specific note I made was milk. Every time I drank milk, my right ear would decrease. No doctor suggested anything, so I took it upon myself to ask for an allergy test. Turned out my test came back negative for milk and other foods. Now during all of this (since the age of 15), I was going through many other tests. I was suffering from pains/inflammation, fevers, swellings, etc, etc. At the age of 17, I was diagnosed with OSTEOMYELITIS. So with that said, we thought that my medical condition was the result of my hearing loss, but they ruled it out. I went to another doctor who was also a naturalist, and suggested a gluten-free diet. I must say that was very difficult, and I only lasted about a year (there weren't any changes during that time).
Fast forward, I am about to be 25 years old on the 17th, and til this day my hearing in my right ear fluctuates. On good days, I can hear partially without my hearing aid, but on other days (currently), I can't hear without it. I am remaining positive that my right ear doesn't go completely deaf since it's been stagnant for a while now, however it's such a mystery. I've been called fake by many (even family members) because they couldn't and still don't understand. My dad even said it was all in my mind (we don't even have a good relationship anymore). I am the only one in my family that suffers from all of this, so I don't have anyone to talk to besides my mom who been through all of this with me. Not sure what else I can do anymore. Any suggestions?
 

deerheart12

Active Member
:welcome: That must be frustrating dealing with fluctuating hearing. I guess sometimes tests and with some doctors it's very hard to find the main cause of why it's happening. It could be many reasons and sometimes it's just really hard to pinpoint the reasons. Have you ruled out auditory processing disorder disorder? Just an idea.

Keep up with your hearing aids if they help you out. And definitely do get involved in the Deaf/hoh community. Take an ASL (American sign language) class so you might meet others and have another communication tool to fall on in case your hearing does go. Local community colleges, online classes too like ASLprint.com

Have you tried out the Google Live Transcribe app on android phones? Sometimes that can help me out with some people. It's not perfect as it is auto recognition.

As for people thinking that you're faking maybe explain that your hearing loss is kind of like a flickering light bulb that you can't control. Or radio static. Sometimes it comes in clear but other times it's just a cloudy day. Maybe can that help?
Or share them this video

Anyways, welcome to the board and know that there are tons of hard of hearing people who struggles just like you!

Annie
 
Hi Annie,
when I lost 100% of hearing in my right ear, in a split second, my brain lost a brother, and now, all the sound is all around, all the time, and all trying to get into my "good" left ear canal, all at once. My ear now has a narrow "cone" that it can hear clearly in, and it is now like a radar. not good.
My brain started to try and compensate for the total loss of one of its own, and make new pathways, but this is all unknown now, this not knowing where a sound is coming from "INSTANTLY", is overwhelming at times. it's so alien.
Someone to my right calls my name, and I turn to my left. ISH.

This is the way I helped my brain make sense of the new pathways it was trying to make.

I got two wireless bone conduction headphones ($135), an "IDONN F1", and an "AFTERSHOKZ AIR", and paired one up to my Samsung 7 phone, and the other up to my Kindle Fire 7. ($50) (fits in the back pocket of my jeans nicely). I put an earplug in my good ear , and I experimented with listening through my skull , WOW, and as soon as I touched the bone phone to the ear plug, it was like an amplifier. From the moment I started to listen to my favorite music "play list", I realized that this was a way for me to "tune out/down" the Tinnitus and other confusing sounds, and communicate with myself better. It actually helped my Vertigo too.
But now to be able to Talk on the phone, listen to music, (or anything else), carry on an "eye ball to eye ball" conversation with someone, and wash dishes at the same time, and feel more comfortable, is a blessing, and a whole lot less confusion.
This background music sets a mood for the day, and I can really get back into the music that I love, and If I want to talk to someone on the phone, hands free, and share stuff from my kindle in real time, it makes for good concentration and communication. It also affords me the capability to go into public settings, with someone connected to me on my phone, and they can hear what I hear, and talk back and forth with me., in real time.

I think that being hands free and ear bud free, with my "Bone Phone" set up, should be tried before any "doctors hearing aids", and maybe you don't need Volume control, which hearing aids are for the most part. Anti noise doesn't work for me.
As far as other people go, I put my finger on my right ear and turn my left ear slightly toward them and say, "I have no hearing in this ear" and they get it , and I can maintain eye contact with them.

I felt "out of tune", until I experimented with these bone phones and Kindle, you guys ( X1Heavy, and AshB) check it out and post how it works for you. Maybe we can set up a network of bone phone users.(and music lovers).

Thanks so much for this video that shows a small part of what it is like to lose brother and sister ears.
But our eyes get so much stronger, and softer, if we give them new tools to compensate for the loss of the most important ear.

Craig
 

AshB

New Member
:welcome: That must be frustrating dealing with fluctuating hearing. I guess sometimes tests and with some doctors it's very hard to find the main cause of why it's happening. It could be many reasons and sometimes it's just really hard to pinpoint the reasons. Have you ruled out auditory processing disorder disorder? Just an idea.

Keep up with your hearing aids if they help you out. And definitely do get involved in the Deaf/hoh community. Take an ASL (American sign language) class so you might meet others and have another communication tool to fall on in case your hearing does go. Local community colleges, online classes too like ASLprint.com

Have you tried out the Google Live Transcribe app on android phones? Sometimes that can help me out with some people. It's not perfect as it is auto recognition.

As for people thinking that you're faking maybe explain that your hearing loss is kind of like a flickering light bulb that you can't control. Or radio static. Sometimes it comes in clear but other times it's just a cloudy day. Maybe can that help?
Or share them this video

Anyways, welcome to the board and know that there are tons of hard of hearing people who struggles just like you!

Annie
Thank you so much for responding! I'll definitely do some research on auditory processing disorder. I started taking ASL classes in 2018 at community college, and currently I am learning from Dr. Bill Vicar on youtube. As for lipreading, I've become really good at it over the years which is also another reason why people may think I'm faking it because on my good days, I can interact fairly well (given that I see their lips, the light is on, etc, etc). But I'm really excited to be on here, I wished I found it sooner though because I did struggle a lot over the years.
 
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