No one likes to repeat themselves, apparently

Posted by ltecato @ltecato, Sep 19, 2021

Last night I Googled “why do people hate to repeat themselves?” I didn’t expect to find much but right up at the top were some people on Quora explaining that they get physically ill if asked to repeat a statement more than once.

One reason is they refuse to accept that anyone has a hard time understanding them unless they are “not listening hard enough.” Others say they consider it a personal attack if anyone asks them to repeat themselves. It’s like they assume that they are being accused of mumbling or they think someone is giving them a hard time because they have an unfamiliar accent.

So give me a rough estimate: How many times can you ask someone to repeat themselves before they have a mental meltdown. My guess would be three, on average. People with “normal” hearing are pretty fragile at times. Even people who can see my hearing aid and have been told in advance that my hearing is poor. Even people who should know better, including some medical providers.

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@joyces

For some of us, it's far more than simply not hearing: it's hearing that someone is speaking, but not being able to decode what's being said. Some of us have, in addition to low levels of hearing, distortion. That's really hard to explain, especially since it doesn't make good sense to me, the person who has it! Between recruitment and distortion, hearing loss isn't really the problem. Fortunately, both are not as bad as they were before I was able to get on a good hormone replacement program, but they're still present.

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Basically, that is what sensorineural hearing loss is...distortion. We can hear but we cannot understand. We have trouble with speech discrimination rather than loudness. With conductive hearing loss, the volume is often the problem, which is why hearing aids can help conductive hearing loss better than SNHL. The majority of hard of hearing people have a combo of these two types of HL, It usually starts with SNHL, and over the years it starts being conductive (volume related) as well. SNHL begins when the hair cells in the cochlea (inner ear) start to die off, one level at a time, over time. Conductive HL is middle ear related. Cochlear implants bypass the cochlea to stimulate the auditory nerve directly....which is why they are so successful. How many of you were told at one time that your auditory nerve was 'dead'?

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@joyces

Because our neighbors are deer, elk, and other wildlife, they don't run any machines. The road is far enough away that I can't hear the occasional car, either. But, there's a really big machine in the partial basement under my bedroom, or so it seems. I know that (a) I'm not supposed to wear my hearing aid when I mow or use the chainsaw or other noisy things, and (b) should use earplugs if I can't avoid something noisy...but, I forget, and then I listen to a rerun of the lawnmower or chainsaw or whatever during the night. I believe that many of the non-existent sounds we hear are sounds we actually DID hear once upon a time. I know that hearing the dishwasher run while I'm in my office is acoustic hallucinations, as I haven't actually heard a dishwasher clearly for a long time, unless I'm wearing the aid and standing right next to it. Even then, I don't hear water swishing, just a faint noise...but, sitting in the quiet of my office, I clearly "hear" the dishwasher, just as I was able to hear it years ago. Just as I can't hear whether or not I've started the car, sometimes I could swear the engine is running after I've shut it off.

I also sometimes think I'm hearing something noisy running while I'm in the kitchen, go stand next to the 'fridge to see if it's acting strange. Again, it's all in my head, not real at all.

Another word for hyperacusis is recruitment, where sounds that most people hear without a problem are overly loud: dog barking, for example. Recruitment is one of the "fun" add ons of Meniere's...probably can be associated with other hearing problems as well. After I went bilateral over two years ago, then finally got the hormones I need to cease having crises, not only did hearing in my one ear that can hear a little return, but the godawful recruitment stopped. (It had been so bad that I wasn't able to wear my aid, because loud sounds were very painful.) That was so encouraging that I'm scheduled to have a new hearing test to see if it might be possible now to have an aid for my nearly useless right ear. I've had recruitment in my useless ear for nearly 40 years (I think), and it's bothersome because I've always at least one large dog, if not two or three. My dog understands that I don't hear, so he barks his big bark to let me know that there's someone walking along our road, over 100' from the house. At least now, with adequate hormone replacement, the sound doesn't tear through my head the way it used to.

I would like to move the "machine shop" from under my bedroom, though! My solution for falling asleep is to work hard all day, which is very easy as I'm the person who keeps up our small acreage and very old house.

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joyces... i missed something ... may I ask which "hormones" you got which helped somewhat with your ear issue/s? J.

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@julieo4

As a group, we hard of hearing folks have to understand that our hearing loss affects other people too. The comments on this thread also show that while we are all different, we are also very much the same. When we misunderstand and ask for clarification we are trying to remain in the conversation. When we bluff by nodding and smiling we can get ourselves in big trouble by agreeing to something we totally disagree with. Asking for people to repeat or re phrase often leads to the dreaded "Never mind, it wasn't important' response. That sets us back a pace or two. It's also a put off that makes us feel 'not important'. But, it is a reality with hearing loss, and unless a person has hearing loss themselves, they never completely understand this.

There are ways to help ourselves that only a handful use. I'm thinking of streamers and BlueTooth or direct audio input microphones that we can use in noisy settings. I never leave home without my Mini Mic, a device that can sync with both cochlear implant processors and specific hearing aids. It makes it possible for me to hear when I'm out for dinner, at a party, etc. Is it perfect? No, I still miss some things, but it helps tremendously. That technoology has kept me from becoming reclusive. It has also helped my relationships with family, friends, etc.

Why don't more people use these devices? A couple of reasons: 1. They don't know they exist because hearing healthcare providers don't tell people about these options. 2. they show when they are being used, and many people spend more energy trying to hide their hearing devices than actually trying to hear. 3. They cost money to purchase. Yes, they are add ons. People who sell hearing aids don't want to discuss these things because they are already trying to sell a product that is extremely expensive.

I have learned more about these types of devices from other hard of hearing people than from all the professionals I've seen in the 50 years that I've had hearing loss.

How many people in this discussion are using assistive technology that goes beyond your hearing aids?

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I have 5 year old Phonaks that do not have bluetooth so I bought the Compilot II for hearing better on the phone...I love it! I can also use it for ZOOM meetings which works out well also. We also have installed a hearing loop in our church which also is very useful...it is just tough getting other people to buy into using it or they don't understand the technology. I tried the mic but did not find it that useful to me. I will be getting new hearing aids by the end of the year so will make sure I get the bluetooth technology along with the T-coil. Anything else you suggest while I am upgrading?

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I have paid the extra $$$$thousand and have a mini mike. It works well in small group settings. When my husband and I go out to eat he hooks it on his shirt pockets and then I have no problems hearing here above the rest of the noises going on. I have tried it in the middle of the table when there happens to be a group of us. At that time it helps some. The only thing is that I forget to take it along most of the time. It really works slick while watching TV.

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@gailhanna

I have paid the extra $$$$thousand and have a mini mike. It works well in small group settings. When my husband and I go out to eat he hooks it on his shirt pockets and then I have no problems hearing here above the rest of the noises going on. I have tried it in the middle of the table when there happens to be a group of us. At that time it helps some. The only thing is that I forget to take it along most of the time. It really works slick while watching TV.

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That's the problem with things that need to be charged. We forget them. I actually bought a second mike because I found I was leaving mine on the charger. Was lucky to find one on eBay for half the cost. Actually, I feel that if a device helps me it's worth it's weight in gold! In reality, any help we can get is a good thing.

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@scottk

I have 5 year old Phonaks that do not have bluetooth so I bought the Compilot II for hearing better on the phone...I love it! I can also use it for ZOOM meetings which works out well also. We also have installed a hearing loop in our church which also is very useful...it is just tough getting other people to buy into using it or they don't understand the technology. I tried the mic but did not find it that useful to me. I will be getting new hearing aids by the end of the year so will make sure I get the bluetooth technology along with the T-coil. Anything else you suggest while I am upgrading?

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You'll have lots of choices and decisions. I always insist on a manual volume control because I want to control that myself. BT needs to be explained well, and it takes some time for many of us to really learn to use it. Make sure the provider gives you that time. One other thing I don't have, but am not sure I would like, is rechargeable hearing aids. If the batteries die, the aids usually have to go back to the factory to be reset. What do you use then? It's just easier, in my opinion, to have batteries handy to use when I need them. Some of these 'improvements' are not as cool as they are marketed to be. It's good to ask questions.

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@julieo4

Basically, that is what sensorineural hearing loss is...distortion. We can hear but we cannot understand. We have trouble with speech discrimination rather than loudness. With conductive hearing loss, the volume is often the problem, which is why hearing aids can help conductive hearing loss better than SNHL. The majority of hard of hearing people have a combo of these two types of HL, It usually starts with SNHL, and over the years it starts being conductive (volume related) as well. SNHL begins when the hair cells in the cochlea (inner ear) start to die off, one level at a time, over time. Conductive HL is middle ear related. Cochlear implants bypass the cochlea to stimulate the auditory nerve directly....which is why they are so successful. How many of you were told at one time that your auditory nerve was 'dead'?

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@julieo4 My hearing loss has a lot of distortion also (sensorineural?) and that came on relatively suddenly and strongly. When the audiologist reads off words for me to repeat my score is abysmally low. I can't help wonder if a medication contributed to it or having cirrhosis might have since it did seem sudden. Have you heard of medications contributing to it much?

I have an audiologist appointment this week and I plan to ask her but sometimes they are not really familiar with those things if the drug is not a highly used drug, which mine are not.
JK

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Definitely drugs can be ototoxic. Even commonly used painkillers like asprin can be problematic for some people. Many that end in mycin or mycyn are on the ototoxic list. I posted that list a while back, but am not sure where to find it. Definitely ask your audiologist. Distortion is usually sensorineural hearing loss. Tinnitus can complicate that too. I hope you get some answers at your upcoming appointment. Please keep me posted.

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@lacy2

joyces... i missed something ... may I ask which "hormones" you got which helped somewhat with your ear issue/s? J.

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I have Meniere's Disease, diagnosed by Dr. F. Owen Black, perhaps the single foremost diagnostician of inner ear disorders (i.e., I really DO have Meniere's). Everyone with Meniere's has something that triggers bad days; fixing that can't cure the disease but can make it possible to live with it. Due to a combination of bad genes and a ruptured appendix at age 8, I've always had abnormally low hormone levels. Meniere's was kept at bay until I quit taking hormones in my mid-40s because my doc considered me "too old." I began to have ever-increasingly serious crises every month, always within a day of the onset of a period, so my trigger was pretty obvious. However, I lived through four years of hell while my doc and I sought a safe combination of replacement hormones. Once we learned what it is (2.5 times as much progesterone as estrogen), I quit having crises 2-3 times a week, 12-15 hours each time. It WAS a great weight loss program, thanks to the many hours of vomiting, but I'll pass a opportunity to repeat the experience!

Over two years, I went bilateral and was functionally deaf for just a year, with increasing crises until they were almost every day. Once I finally found a doc willing to prescribe hormones, the hearing I'd lost returned to the level where it had been, and I quit having crises. Then I scheduled a series of visits to a vestibular therapist to improve balance, which had been further damaged. I'm back on track now, gradually reducing the very high doses of hormones, but I won't make the mistake of cutting back as far as did during my 50s and 60s--I really believe that I went bilateral because I'd cut back way too far on the hormones.

There's a very high percentage of people with inner ear disease, esp. Meniere's, who are post menopausal women. One study has been done in China that proved that there's a link, but most docs still stick to the tried and true (but very often ineffective) prescription to avoid salt. While it's good for everyone to avoid excessive salt, it's not healthy to live with a severely restricted diet: the first time you go out in public and eat normal food, you're likely to have a big problem (or bigger one, assuming the salt restriction doesn't "cure" the damned disease).

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Thank you for taking time to explain. I am between a rock and a hard place not being able to take MANY medications as have narrow angle glaucoma.... also not having a dr for 2 years but one on-line and so it goes; now a new very nice Nurse Practitioner but she has a long list of various ills to tackle with the medication restraints and I cant see her having that much time with all her other patients; you really seem to have had an excellent rapport with your dr. something i missed for many years as my dr didnt care. Today is one of worst for a while and I just dont know where to turn anymore. Good for you to push for what you know your body needed! J.

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