Hearing Loss Ruining my Life

Hearing Loss
#1

Hi everyone… new to this forum and have enjoyed reading the posts so far. Beware this post is long… :worried:

I’m 34 with three daughters… I suffered from SSHL when I was pregnant and had mono. I was in the stage in my pregnancy where I had to choose to go without steroids and hope that my hearing came back, or possibly harm my unborn baby with the steroids. I chose to go without to protect my daughter and my hearing never came back :neutral_face:

That was four years ago. It took me almost two years to come to terms with the fact that yes, I would need hearing aids and I got my first pair of Widex Passion. They never worked like I felt like they should, and my former audi basically told me I was out of luck that nothing else could be done for me. Thats not something a mom of three young daughters wants to hear. :tired_face:

Fast forward to a couple of weeks ago, I found a new audi who gave me some hope and I’m currently wearing a trial pair of Oticon OPN with custom ear molds. They seem to be somewhat better but for the price and being told these are the best of the best, I would expect more. The Audi tells me it’s going to take time… is it really going to take time to get me where I can hear my daughters again, or is she just trying to get me past the trial period?

This is ruining my life - I can’t be involved the way I would like with the older kids school, I can’t understand what my kids are saying and the songs they are singing, I haven’t been able to go back to church… it’s every moment of every day and some days I feel like they would be better off without me. It’s so hard to deal with, on top of that when it is kinda quiet around the noise in my head sounds like I’m standing next to a running HVAC unit. Its making me feel crazy and I’m not sure how much more I can take!

#2

Do you have a copy of your audiogram? You can enter it in your settings.

I understand your frustration. I had Meniere’s with a similar, dramatic change. The OPN are RIC aids. Most manufacturers offer a BTE aid that has more power and less distortion. That may improve the experience.

Have you got an ENT? There may be procedures they can perform to improve hearing.

Larger hospitals have clinics that do hearing rehabilitation. Your ENT might refer you to one

RIC = Receiver In Canal (speaker in the ear)
BTE = Behind The Ear (larger speaker behind the ear and hollow tube sends sound).
ENT = Ear. Nose and Throat specialist

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#3

Several thoughts:

  1. I agree with KenP that seeing an ENT if you haven’t would be a good idea.
  2. Considering your complaints about the noise, I’m not sure the OPNs are your best choice. An ENT could likely refer to an audiologist that is more familiar with your kind of hearing loss and could offer other options for hearing aids.
  3. It seems pretty clear that you are discouraged and depressed. Although connected to the hearing loss–it is something that can be helped. I would encourage seeking assistance. I think help could let you feel better and give you more energy to pursue improvement in your hearing.
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#4

You can learn to live with it and become highly functional. Look at my audiogram - at least you have two ears that can hear. Give up on the idea you will ever hear “normally” again, and hunt down an audi with multiple lines of aids and work to get to an aid and settings that work best for you.

Personally, the Widex line works best for me, and I really like the new Unique line of Widex.

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#5

Thanks for the info. The ENT did refer me to the audiologist. Had an MRI done and came back fine. ENT says there’s nothing else he can do for me. My audiogram is in my profile but not sure how to share it here. My current Audi said the RIC is the best to keep the sound “in my ears”. Its hard too - we spent so much money a couple of years ago and now here we are again. So much frustration.

#6

I see you did figure out how to enter your audiogram and, yes, that is a serious loss throughout the speech spectrum. I do think BTE might improve the situation. It would provide less distortion.

You are seeing us mention what we found successful and we do tend to be fanboi of a particular brand. Each hearing company does thing a bit differently and each brand has its adherents. If one isn’t working well for you, don’t let the trial period expire – return them. Try another. Don’t let the cost eat your savings.

Are you near a university with a audiology department? Colorado and St. Louis come to mind in the US. There may be one in Puerto Rico? These are in Florida.

You may be a candidate for a cochlear implant as a last resort.

You also need to find an audiologist that has results with your type of hearing loss. Many are seeing only those with a normal loss and aren’t as conversant with certain sever loses.

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#7

100% behind what KenP is saying here. I know someone with a loss similar to yours and she loves the ReSound Enzo. To emphasize, it takes a long time, well past the trial period unfortunately, to get used to hearing aids. A CI might be an option for you, too, definitely ask an ENT if you are a candidate. If not, best case is you end up with a good audiologist, some hearing rehab, too and wear the aids every day for several months. You will be surprised how much better you can hear. Hanging around with others like us, literally in person that is, not virtually, will do wonders for your spirit. Look into ALDA or HLAA. Best of luck!

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#8

Speak to ENT regarding candidacy for Cochlear Implantation. Sorry to hear about your SSNHL. Its an awful occurence and in my experience can have a significant affect on a persons mental health.

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#9

I agree that you should look into cochlear implant candidacy. Additionally, I wanted to say don’t beat yourself up about not taking the steroids. There is actually no strong evidenence that they would have made a difference. Doctors use them as a sort of theoretically sound hail mary.

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#10

Wow Leslie_P, my heart goes out to you! You made the BEST choice in forgoing steroid treatment not only for the health of your baby but also for yourself. Even a single shot of steroids to treat inflammation comes with side effects. It basically releases a floodgate of ESTROGEN into your body, which can actually be toxic at high doses.

That said, I was also thinking of cochlear implant. I have no experience in these devices, but also have a severe loss (albeit not as much in the same frequencies). It is essential to seek any and all help for hearing with small children, your own youth and a full life in store for you. I realize the time and expense is frustrating and exhausting you of any hope, but HANG IN THERE. You express yourself very well, and even if you need to communicate in writing, you could still hold a job and have your kids communicate in writing as they get older. Meanwhile, technology will creak along, and hopefully your situation will have some relief.

Know that you are going to be on the journey for a long time, and your best option is to rely on the strength of family and friends to understand your situation. You have much to offer just in experience to share here! Good luck to you and stay here.

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#11

As I read your post, it is sounding like your aids are new and still in the trial stage. Also, I am not sure who or the qualifications of your audiologist. I would quickly seek out a audiologist who has a AuD in Audiology. I live in the Minneapolis area and am fortunate to have the University of Minnesota audiological clinic available.
Search your area and see where you can find a good audiological clinic. Those kinds of folk have advanced training and some do specialize in your situation. Rely on them for recommendations for which aid and what type of aid could best serve you.
There have been several really good BTE aids released this past year. You should have the option of trying them out to be sure you get the best fit… or maybe a cochlear implant would best serve you.
BUT to get that info quickly seek out AuD’s in your area or a well known clinic at a medical center.
Happy and successful hunting!!!
Perhaps if you let the group know the area where you live they could offer suggestions.
Dunc

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#12

Dear Madame:
You are getting some great advice from all of these nice people. You are a nice person. Hearing loss can be frustrating and isolating. It’s hard for other hearing people to understand, and most hearing people are good people who want to help. No wonder you feel as you do. Keep at it. Dig out. Good luck.

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#13

Hi Leslie, my heart goes out to you as SSNHL is a terrible affliction to deal with, Tis physically draining though the amount of concentration required to just understand folks and psychologically isolating through your inability to communicate with your fellow friends and loved ones, been HOH 25+ years now with a very similar Audiogram in the the severe to profound threshold… but you will adapt, you have to as you have 3 children, you will go through every emotion in the emotional spectrum, this includes good days and those not so good!!! The advice u get on here is mainly from old hands some of whom have been where u r today, they adapted with their loss and eventually accepted it and moved on… One other piece of advice would be to learn sign language as I did, it teaches u 2 things, u are not alone and how to effectively communicate with others, Tis also fun and u will learn to laugh again and u will b among like minded souls… good luck, Kev x

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#14

Leslie I understand your frustration, I also had a sudden loss in my R ear early this year. I’ve been deaf in my L ear since the age of 12. I also have been shopping around for new HA’s. My advise is if you are not happy with the quality of sound in the aids you are trying tell the Audi no not good enough. Don’t be afraid to try another Audi either. If the one you are seeing now says there’s I nothing else,just say thank you and try another one. You will find an Audi that will listen to you. But in my opinion you need BTE aids with molds. I had to go to this type of aid to get some sort of clarity in speech. While I wait for my CI appointments. Good luck.

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#15

Hi Leslie!
First thing, (((big hugs))) coming your way! I apologize for not responding sooner but I don’t spend much time on this forum. I also began loosing my hearing in my early 30s after the birth of my first child, then two more children and more loss came with each one. I’ve been on this journey for 17 years now and I am in a good place, but it hasn’t always been easy. I hear echoes of myself in your post. I withdrew, stopped going to church, worried about communicating with my children… so much of the same things you mentioned! I peeked at your audio gram and our loss patterns are very similar even! And I live Texas. (Iassume you are in Texas from the flag in your avatar). If you are in the DFW area or Houston area, I know that there are active chapters of HLAA, an organization I found extremely helpful as I learned to deal with my hearing loss. I am now in the Austin area. I would be more than willing to chat more and help however I can! I had people who reached out to me and help me through, I would love to pay it forward and help you however I can!

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#16

Thanks for responding! I am in the DFW area so I will look around for some support here. I’d love to chat with you if possible. I’m feeling pretty hopeless right now!