I am new. Reverse Cookie Bite both ears

Hearing Loss
#1

Hi. I’m not even sure if I feel confident asking questions because this is so new to me but: last year after years of tinnitus, vestibular migraines, intense vertigo (all blamed on ptsd wtf?)

I was diagnosed with a reverse cookie bite in both ears the graphs basically looked identical.
I got hearing aids. They made it better in some ways and much worse in others. Starks, my uncle is an audiologist he swore by them. I stopped wearing them because my migraines came back. My con workers were annoyed by me not having them on the right setting or just not working.
Maybe I’m just not educated enough or used to this. I’m a single mother. 2 beautiful Teenagers. 43, a classically trained singer and music teacher. Since being diagnosed a year ago, my hearing loss had become worse. Much worse. It is affecting my life in every way. I’m concerned that accepting a job as a music teacher for middle school this fall might not be ok. I’m concerned that my tinnitus is back. My relationship has suffered, family life…I’ll be ok it’s not the end of the world. I’ll be ok…

I was told it is only going to get worse.

Any advice? Any advice would help.

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#2

Welcome to the forum @emilyfrostmusic, you are in the correct place for advice, and hopefully help…. If you could please post up your audiogram, that would be of great assistance, we have a few very experienced Audioligist’s, on the site, whom may be able to give you valuable information, on your reverse cookie bite loss. There are also many professional musicians, and teachers, so you are amongst many of your peers…. All the very best, and good luck on finding a viable solution. Cheers Kev :wink:

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#3

Welcome to the forum.

I feel for you and your situation. Dealing with the things you mentioned sure can be life changing.
From reading this forum many years your reverse cookie bite hearing loss is one of the more challenging to fit hearing aids to properly. Finding an audiologist with the right experience is important.

What hearing aids have you tried? We have a few members here with reverse cookie bite losses that found Oticon hearing aids to be a better choice for that loss but it still comes down to the right fitter. Finding the right fitter is so important.

Good luck and hang in there.

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#5

This is complex.

Knowing the etiology of your hearing loss would be helpful and might lead to different approaches to managing the hearing loss. Cookie bite hearing loss is often genetic and progressive, but it doesn’t typically come with vertigo. Have you seen an ENT and have they concluded that your hearing loss and your vertigo are separate issues? Does your hearing loss fluctuate? If you have vestibular migraines, are you working with a neurologist to manage them?

I don’t say this often, but you need to see an audiologist and NOT a hearing instrument specialist. You need someone who is comfortable working with your complex hearing loss to maximize communication, and THEN comfortable maximizing your musical function. This may be a journey. Take your family members to your appointments with you if only because it helps them understand.

Additionally, consider counselling support. Hearing loss is difficult on its own, but when your ears are your job is gets harder, when it is accompanied by a host of chronic symptoms that make you feel awful it is harder. Look for someone experienced with chronic health issues, grief, and relationships.

You will be okay. But this also isn’t small beans. You are going through something very significant and your first step is probably to seek out solid professional support that can help you navigate this.

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#6

Your response means so much to me. I think I’m grieving mostly as a musician and a mother but…This is what life gave me and I appreciate so much that there is someone who took the time to respond and advise. Thank you thank you!

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#7

Also, I have seen an ent and audiologist but the audiologist was about as helpful as a brick wall. So I’m going to go back soon to see the ent.

#9

Yeah, it can be hard to find great medical professionals. Word of mouth is usually good, if you know people with hearing loss. If you are in a smaller community it might be harder, if you are in a big city I would expect that there’s a star SOMEWHERE. If you are in Southern Ontario I have someone for you, but I’m guessing you’re not.

I don’t think you will lose music, but you might have to interact with it differently now in some ways. Some things that were easy may be harder. But this change may also bring new musical experiences that could be interesting or beautiful. Hearing aids should be able to help support your access to music, if imperfectly, but can take some work and know-how to optimize.

But if this is impacting your relationships, I think you may need to expect to first work on optimizing speech access through hearing aids (and possibly other devices) and THEN worry more about the music, rather than everything all at once. I would always advise involving your loved ones, talking to them about the changes you have experienced, talking to them about what is hard and what is easy, and brainstorming as a team strategies you can use to improve communication for everyone. We take easy communication for granted and it can be such a shock when we lose it, but communication is a group experience and it cannot possibly be all on you to improve it. Ask for help. Plus, the loss of easy communication is indirectly happening to them as well, and it will probably help you come together as a team if you acknowledge that. If you have young kids. . . remember that they are typically much more flexible than we give them credit for. You can train them to communicate well with you just like you’ve train them to, well as a parent, do literally everything else. :slight_smile:

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