Grew up with Hearing Aids: Are they still right for me?

DeafRaptor

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This is my first post. :wave: I have two reasons for this post, the first is introductions. I was born with mild to moderate bi-lateral hearing loss to a hearing family. I have two older brothers and a twin sister (who now has a little hearing loss, but doesn’t use hearing aids). I was mainstreamed in a private school. I was given hearing aids and a speech therapist and I learned to lip-read a little. I believe when we were little, the school taught us the ASL alphabet, but I apparently did not use it often enough and forgot about it until later. I also had my sister by my side, which I think was what helped me through my pre-college years. During elementary graduation, the teacher talked about each graduating person’s main attribute. They mentioned my skill of “getting excellent grades while never being on the same page”. My sister graduated top of our class in high school and I was second. My hearing loss continued to decline. In college, with my sister still by my side, I was given other accommodations to include CART and note-taking. I felt bad about accepting those accommodations and I thought maybe they were for other people, otherwise, why wouldn't they have offered those to me before. I also learned (relearned?) about ASL & about Deaf Culture. It was a brand-new, trial program at the university and I took all the classes I could. My sister also took the ASL & Deaf Culture courses and we signed on and off together. I also hung out with the small Deaf Community there, but they didn’t meet often. I graduated and did extremely well for myself. I moved to Washington, DC and got a job with the Federal Government and have been working with the Government for the last five years. I should note that my sister did not accompany me. My hearing loss now starts at moderate, but is mostly in the severe/profound range. I was shocked when I learned how many sounds I had not been catching even with brand-new digital hearing aids, since previously my sister had been there to tell me about an alarm, the door, or phone, etc. I have overslept, burnt food, missed visitors and callers, etc, which are all important to me. I also cannot locate the source of a sound that I do hear with or without hearing aids. Rather than buy a ton of technology to cover all the sounds, I learned about hearing service dogs, but thought those were for other people since my hearing loss wasn't completely under 65 db as some programs require. Nevertheless, I adopted a dog, Leah, and found a local dog trainer to help me train her to alert me to sounds. After mastering her third sound alert, the trainer certified Leah, but I still feel guilty about bringing her out to public since I did most of the training rather than an "official program" and her "manners" are not perfect (no disturbances, just things like passive begging rather than ignoring other people, etc). That's the back-story.

Now I will talk about the main reason for this post. I have heard many stories about kids with new hearing aids who lose them on purpose and about late-deafened elderly people who refuse hearing aids. Those stories have been told by hearing people who try to say those stories are about a young child’s defiance or an older person’s denial. Then they go on to say hearing aids work better now and everybody with a hearing loss should get them; “there’s no reason not to”. I also know that there are people, who have lost all of their hearing (“ear died”) over time and gave up hearings aids, but then the previous people would try to get them to get CIs, but that’s a different story (I would never get CIs or any other hearing-assisting surgery as I see hearing loss as not life-threatening and those surgeries as unnecessary). The hearing world had taught me that it’s important to do all the work it requires as a deaf person to try to be hearing, so that I could communicate with them rather than expect everyone else to work hard to try to communicate with me (I know now this is an unrealistic, unfair view). Now I know there are other options and I am not so sure what to do. If a person looked at my audiogram, they would see that I am in the middle/lower area (it’s a slope for me), rather than the top (not yet need HAs) or bottom (HAs not really useful anymore). So there is still a little benefit for me from hearing aids for communication (not just ambiance noises). However, my ears are always bothering me (itchy, painful, ear infections, etc) from wearing the hearing aids all day to communicate, even though I try taking them out from time to time to let my ears “breathe”. I have expensive, digital hearing aids that tried to bring my specific hearing loss up to 0 db for each frequency, but that means I hear all of the background noises (humming from A/Cs & computers, dogs barking, nail clippers). I find that I cannot block any of those noises out; it feels like the noises are grinding and pounding against my brain. :smash: I have had lot of migraines over the years, sometimes daily, from that. If conversation is going on in noise, I hear all the sounds (to a degree) and have to consciously determine which is noise and which is speech. There are programs on my hearing aids to help limit the background noise, but I can no longer understand speech and it is very disorienting when I use those programs. I only catch a little speech with my hearing aids, a little with my limited skill with lip-reading, a little more with my skill with mad-libs (fill in the blanks – still can turn out as funny as mad-libs). And I cannot even follow one conversation if another one is going on at the same time. It’s a lot of work and very exhausting and stressful. So much so, that at times I find myself no longer listening or at least no longer asking them to repeat, since in previous experiences people have gotten frustrated and said “never mind” (no matter the kind thoughts here, that’s never going to change). I will admit that I have gotten very depressed and so stressed that I cried because of it. :cry: Some of the problems I have been having, an audiologist would say I need a second hearing aid and that would fix it. However, I have bi-lateral hearing loss and ALREADY use TWO hearing aids, so do I buy a third?

I have always been told by hearing people what to think about my hearing loss. I am trying to find my place in the world (am I hard of hearing or deaf) and I thought here would be a good place to get another view, so I can take both sides and make up my own mind. :confused: I am wondering if I should phase out my hearing aids. I also think that, while I may use it from time to time, I would phase out my voice too as it is almost “perfect” (other than the rare stutter that seemed to have developed recently); people assume my hearing is perfect and when I tell them otherwise, they say “oh I didn’t know” or “I would not have guessed” (thanks a lot to the speech therapist-hearing people may be able to understand me, but it’s harder for me to understand them). I am also curious about other people’s experiences with giving up on hearing aids (before the HAs lost all their usefulness) and going all ASL, if there any here, and how you decided. Sorry for the long post :blah: and thanks in advance for replies. :ty:
 
well I never give up on my hearing aids since I have the streamer and everything now :D
since I have a severe loss, I can still recive benefits from the techolonigcal avdances of the hearing aids
a strong hearing aid should always help your severe to profound loss
if not, CI it is.
 
Welcome, DeafRaptor. Love the name.

The good news is that you get to decide what's best for you and what you want to be called. :D

I'm one of those people who wear HAs sometimes. I have recruitment and it can be challenging wearing HAs for extended periods of time. I never wear my HAs in restaurants and I use ASL then. :cool2:
 
Hi DeafRaptor,
I am kinda one of those people you were talking about, giving up on HA's before they were "no longer helpful". I was unaided for about a year, with what I had been told was moderate loss... and to be honest... it was wonderful! I have recently gotten new HA's... and at times I am happy that I have them, but for the most part... they are just a pain in my ears and head. I have worn HA's since I was 8, though I was diagnosed long before that. The reason I got my HA's was because my work was suffering, I was misunderstanding my clients and my boss... missing when people walked in the door, not knowing the phone was ringing (I have a captioned phone) and that sort of thing. So I went back to the audi to find that my hearing had progressed greatly... I was now in the severe range.
I was fitted with new HA's and began to wear them all the time. Speech discrimination is still very hard... but understanding my clients is a bit easier. when I am not at work I am pretty much HA off and voice off, using sign more and more. I have been plagued with ear infections since I was 8, and during my year off from using my HA's, I only had 2 (which was much better than the almost constant infections I had previously even with constant cleaning of my HA's) and now... in the 2 months I've had my HA's, I've begun to develope an ear infection that won't go away in my left ear and had nearly constant headaches again (this unfortunately does not have anything to do with the programing of my HA's, but more to the fact my brain is very confused from what I understand). Do they help me in my very audist work place, yes... would I get them again... yes... am I ecstatic when it is 6pm and i get to take them out... hell yes... would I ever get a CI... not if my life depended on it.

As to if you are Deaf or HoH, that is a matter of who you are, not your hearing. You can be Deaf and have all your hearing, or you can be deaf, but the majority of the Deaf community will classify you as HoH, because of your viewpoints on life and the community. It is great that you have your dog, and that she is being a wonderful companion to you, as well as a great help, when I get out of my tiny apartment, that will be my next purchase.

My suggestion to you, since you live in DC, there is a HUGE Deaf community there, branch out, get involved and see where that takes you. Your identity is not merely a destination, but it really is a journey. Do I think you will benefit from ASL, most certainly, but is it the right decision for you to go HA off, only you can make that decision.
If you have any questions, let me know, we are all here to help with whatever you need. There are alot of different viewpoints here, from hearing, terps, HoH, deaf, Deaf, HA users, CI users, oral deaf, non-oral Deaf, LDA, CODAs, DODAs and everything in-between.
 
I am wondering if it is an allergy to the material that your current ear molds are made of? How about checking about ones made of a different material as there are several available.
 
This is my first post. :wave: I have two reasons for this post, the first is introductions. I was born with mild to moderate bi-lateral hearing loss to a hearing family. I have two older brothers and a twin sister (who now has a little hearing loss, but doesn’t use hearing aids). I was mainstreamed in a private school. I was given hearing aids and a speech therapist and I learned to lip-read a little. I believe when we were little, the school taught us the ASL alphabet, but I apparently did not use it often enough and forgot about it until later. I also had my sister by my side, which I think was what helped me through my pre-college years. During elementary graduation, the teacher talked about each graduating person’s main attribute. They mentioned my skill of “getting excellent grades while never being on the same page”. My sister graduated top of our class in high school and I was second. My hearing loss continued to decline. In college, with my sister still by my side, I was given other accommodations to include CART and note-taking. I felt bad about accepting those accommodations and I thought maybe they were for other people, otherwise, why wouldn't they have offered those to me before. I also learned (relearned?) about ASL & about Deaf Culture. It was a brand-new, trial program at the university and I took all the classes I could. My sister also took the ASL & Deaf Culture courses and we signed on and off together. I also hung out with the small Deaf Community there, but they didn’t meet often. I graduated and did extremely well for myself. I moved to Washington, DC and got a job with the Federal Government and have been working with the Government for the last five years. I should note that my sister did not accompany me. My hearing loss now starts at moderate, but is mostly in the severe/profound range. I was shocked when I learned how many sounds I had not been catching even with brand-new digital hearing aids, since previously my sister had been there to tell me about an alarm, the door, or phone, etc. I have overslept, burnt food, missed visitors and callers, etc, which are all important to me. I also cannot locate the source of a sound that I do hear with or without hearing aids. Rather than buy a ton of technology to cover all the sounds, I learned about hearing service dogs, but thought those were for other people since my hearing loss wasn't completely under 65 db as some programs require. Nevertheless, I adopted a dog, Leah, and found a local dog trainer to help me train her to alert me to sounds. After mastering her third sound alert, the trainer certified Leah, but I still feel guilty about bringing her out to public since I did most of the training rather than an "official program" and her "manners" are not perfect (no disturbances, just things like passive begging rather than ignoring other people, etc). That's the back-story.

Now I will talk about the main reason for this post. I have heard many stories about kids with new hearing aids who lose them on purpose and about late-deafened elderly people who refuse hearing aids. Those stories have been told by hearing people who try to say those stories are about a young child’s defiance or an older person’s denial. Then they go on to say hearing aids work better now and everybody with a hearing loss should get them; “there’s no reason not to”. I also know that there are people, who have lost all of their hearing (“ear died”) over time and gave up hearings aids, but then the previous people would try to get them to get CIs, but that’s a different story (I would never get CIs or any other hearing-assisting surgery as I see hearing loss as not life-threatening and those surgeries as unnecessary). The hearing world had taught me that it’s important to do all the work it requires as a deaf person to try to be hearing, so that I could communicate with them rather than expect everyone else to work hard to try to communicate with me (I know now this is an unrealistic, unfair view). Now I know there are other options and I am not so sure what to do. If a person looked at my audiogram, they would see that I am in the middle/lower area (it’s a slope for me), rather than the top (not yet need HAs) or bottom (HAs not really useful anymore). So there is still a little benefit for me from hearing aids for communication (not just ambiance noises). However, my ears are always bothering me (itchy, painful, ear infections, etc) from wearing the hearing aids all day to communicate, even though I try taking them out from time to time to let my ears “breathe”. I have expensive, digital hearing aids that tried to bring my specific hearing loss up to 0 db for each frequency, but that means I hear all of the background noises (humming from A/Cs & computers, dogs barking, nail clippers). I find that I cannot block any of those noises out; it feels like the noises are grinding and pounding against my brain. :smash: I have had lot of migraines over the years, sometimes daily, from that. If conversation is going on in noise, I hear all the sounds (to a degree) and have to consciously determine which is noise and which is speech. There are programs on my hearing aids to help limit the background noise, but I can no longer understand speech and it is very disorienting when I use those programs. I only catch a little speech with my hearing aids, a little with my limited skill with lip-reading, a little more with my skill with mad-libs (fill in the blanks – still can turn out as funny as mad-libs). And I cannot even follow one conversation if another one is going on at the same time. It’s a lot of work and very exhausting and stressful. So much so, that at times I find myself no longer listening or at least no longer asking them to repeat, since in previous experiences people have gotten frustrated and said “never mind” (no matter the kind thoughts here, that’s never going to change). I will admit that I have gotten very depressed and so stressed that I cried because of it. :cry: Some of the problems I have been having, an audiologist would say I need a second hearing aid and that would fix it. However, I have bi-lateral hearing loss and ALREADY use TWO hearing aids, so do I buy a third?

I have always been told by hearing people what to think about my hearing loss. I am trying to find my place in the world (am I hard of hearing or deaf) and I thought here would be a good place to get another view, so I can take both sides and make up my own mind. :confused: I am wondering if I should phase out my hearing aids. I also think that, while I may use it from time to time, I would phase out my voice too as it is almost “perfect” (other than the rare stutter that seemed to have developed recently); people assume my hearing is perfect and when I tell them otherwise, they say “oh I didn’t know” or “I would not have guessed” (thanks a lot to the speech therapist-hearing people may be able to understand me, but it’s harder for me to understand them). I am also curious about other people’s experiences with giving up on hearing aids (before the HAs lost all their usefulness) and going all ASL, if there any here, and how you decided. Sorry for the long post :blah: and thanks in advance for replies. :ty:

Hearing people in general make a lot of comments that show their ignorance of deafness. It is best to take those comments with a grain of salt. You are the one who is deaf, and you are the best one to decide how to manage it in a way that is most comfortable for you, not for the convenience of the hearing.
 
HA molds

I am wondering if it is an allergy to the material that your current ear molds are made of? How about checking about ones made of a different material as there are several available.

I have had several different HAs in the 23+ years I have worn HAs to include ones of different materials. It seems that my ears just hate having things in them. But :ty: for your thoughts.
 
I have had several different HAs in the 23+ years I have worn HAs to include ones of different materials. It seems that my ears just hate having things in them. But :ty: for your thoughts.

try getting some hypoallegenic earmolds, that will help
 
I had those already and used them until I needed to replace them. They didn't help as far as comfort. :sigh: Oh well

did you try going some place else for ear molds , maybe the person is not making a good fit for you.
 
did you try going some place else for ear molds , maybe the person is not making a good fit for you.

Yeah, I have had many ear molds made over the years and several different offices make them. It's not the feel of the mold or the fitting. It's the environment it creates in my ear even trying to have it on only a few hours a day versus 8+ hours. The molds have even had proper vents. :| But, thanks. :hug:
 
Yeah, I have had many ear molds made over the years and several different offices make them. It's not the feel of the mold or the fitting. It's the environment it creates in my ear even trying to have it on only a few hours a day versus 8+ hours. The molds have even had proper vents. :| But, thanks. :hug:

I think some ears just have problems with it... no matter what the mold is made of, who makes it or the shape, so it is something you are going to have to think about if it is worth it for you.
 
I argee with Ash on this :D

yeah... thats how it is for me.. I've tried everything... and it doesn't matter hypoallergenic, clear, colored, sparkles, anything. My ears just don't want to be intruded by HA's apparently!
 

what is sad is that I had to google ikr... man do i feel old... but yeah... My ears have been enjoying the day off from having to have something shoved into them! my left ear is starting to get another ear infection... and there is nothing that I can do to stop it... this combined with the odd noises that I have been hearing for the past year makes my HA's almost unbearable at times. Though sadly the noises continue with or without my HA's.
 
How do you store your hearing aids overnight? After I started using Dry & Store I stopped getting ear infections and my ears felt more comfortable.

Do you have volume control on your hearing aids? Perhaps just keeping your hearing aids on a lower volume may help. Though, I don't think you can't get the volume really low with the current generation of digital hearing aids.

You mentioned that you have expensive digital hearing aids. If you have enough programs, than perhaps you could ask an audiologist to program one so that you get just enough sound so that you can know when you need to switch it into a program where you can hear people. This would simulate a hearing person's ability to tune out until they hear something that interests them, like their name or a friend's voice.

I was able to do that with one brand of hearing aids and I really liked that.

Anyway just some ideas ...

And yeah, I need to look up acronyms all the time too. :) Esp., after I joined this board. It seems like every web site has its own lingo. I love urban dictionary! :)
 
How do you store your hearing aids overnight? After I started using Dry & Store I stopped getting ear infections and my ears felt more comfortable.

Do you have volume control on your hearing aids? Perhaps just keeping your hearing aids on a lower volume may help. Though, I don't think you can't get the volume really low with the current generation of digital hearing aids.

You mentioned that you have expensive digital hearing aids. If you have enough programs, than perhaps you could ask an audiologist to program one so that you get just enough sound so that you can know when you need to switch it into a program where you can hear people. This would simulate a hearing person's ability to tune out until they hear something that interests them, like their name or a friend's voice.

I was able to do that with one brand of hearing aids and I really liked that.

Anyway just some ideas ...

And yeah, I need to look up acronyms all the time too. :) Esp., after I joined this board. It seems like every web site has its own lingo. I love urban dictionary! :)

I really do appreciate your thoughts, unfortunately it seems I've already tried your ideas. The audiologist would scold me if I didn't keep the hearing aids clean and use the Dry & Store. :lol: When I had analog HAs growing up, I used to put the volume ALL the way up. I put up with the discomfort because I craved communication, which I couldn't quite get (early HAs didn't have many bands to adjust to my hearing loss). Then with the digital, they were able to better map the HAs to my audiogram, but the noise got worse and I was turning the volume ALL the way down. Even trying the different programs available with my digital HAs (which were definitely cool at first) just gave me the option of either comfort OR communication. For almost two years and many visits (luckily visits were free after purchasing hearing aids) we tried and we couldn't seem to find something where I could have both. There didn't seem to be a Venn Diagram equivalent where both some comfort and some communication intercepted. If not for ASL, I would put up with the discomfort even longer because I do value communication.

For a couple weeks now, I have been trying to live without my HAs. I've only put them in for a few minutes at a time at work when someone needed a quick answer to a couple questions where face to face communication was best option. I've used paper and pencil for communication with other people outside work. I've used ASL with my sister and other people I've met who know ASL. WOW! :shock: What a difference! I feel more like a normal person and less like a broken hearie. :cool2: No Offense To Anyone Else Is Intended-I Don't Feel That Other People Who Would Choose Differently Are Broken (its just how my situation made me feel).
 
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