How does hearing loss change you?

Posted by joangela @joangela, Sat, May 11 7:59am

For me, hearing loss has always been a part of my life. Those darn hearing tests in elementary school always put me in the category of hearing loss. Now, that I am much older, in my late 50s my hearing loss is profound. It is so bad, even my hearing family, has a real hard time adjusting to it.
How it has really changed me?
I was a small business owner, and a top notch sales person. I was a huge people person and an excellent communicator. It’s all gone.
A major change in my life.
How about you?

@lioness

@nurseheadakes I thought blueberry retired from nursing did 35 yrs but where I live I still help with my knowledge also on here . After my husband died there was no one back home ,friends but my son,s family here In Happy here ,you make your own happiness.

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Once a nurse you never really retire because your knowledge to serve and help others is always there – just like Florence Nightingale. Find something you like to do – your passion or what is close to your heart and go with it. It defines you regardless if you are single or married, with family or with friends. Serving others is what this country is defined by and what is gained by all. When you provide others with something, it gives back to you double-fold. Taking care of you and others works well as they have shown in this community. Its a showcase for the world. Its the golden rule that seems to lost its luster these days.

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Most drugs/medications on the market are toxic to our body. So the best way to avoid taking any medication is to prevent the migraines in the first place. That is my number one goal each day. Avoiding situations that cause the headaches, like avoiding loud noises, avoid foods that I am allergic to or that will bring on a migraine, avoid blinking lights or strobe lights, avoid strong sunshine by wearing sunglasses, sleeping enough, avoiding overload of stress, and other markers of migraines. The idea is to have Plan A and Plan B. I have multiple steps to manage my headaches including completing a log of my hours of sleep, migraines, stimuli, vertigo, falls and other like symptoms and treatment. This allows me to keep a strong history of how I manage my health and what works and how my treatments work or don't work. My hearing loss has not gotten worse since being on these drugs because I cautiously use them only on days that the level of pain is on the high end of the pain scale. [1-10] That is why a person needs to understands why there are steps or progressions in treatments to getting full treatments for migraine syndrome. There are physicians that are certified in this program and when discussing this with them – your hearing tests can be included in your care plan. As a side note: your prescriptions for Triptans only give you 9 tablets at a time – you need to use them wisely, thus following your plan with your neurologist is warranted.

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@nurseheadakes

Once a nurse you never really retire because your knowledge to serve and help others is always there – just like Florence Nightingale. Find something you like to do – your passion or what is close to your heart and go with it. It defines you regardless if you are single or married, with family or with friends. Serving others is what this country is defined by and what is gained by all. When you provide others with something, it gives back to you double-fold. Taking care of you and others works well as they have shown in this community. Its a showcase for the world. Its the golden rule that seems to lost its luster these days.

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@nurseheadakes I agree with you 100%

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@nurseheadakes

Experience was the driving force for me. I didn't like not hearing enough or like other people. True, I was 'disabled' but I wanted to be 'able' to do things on my own as best as I could. (with some help perhaps. Hearing through a device just wasn't enough. I had some residue hearing but it was the understanding what people were saying – was what I couldn't get enough of. THAT is what aggravated me all of the time. People talking too fast, loud sounds, background noises, mustaches that covered up lips, chewing gum, and people looking away from me so I couldn't read their lips, all contributed to me being unable to be a part of any conversation or activity. Because I didn't participate – others thought me aloof or if I answered wrong – I was 'mental' or off my rocker. I never thought much about it other than I thought they were wrong and I was right!
Remembering back to the time when I first discovered that I was hard of hearing, I had to work with the new technology then – analog hearing aids and lip reading. Then it was onto digital hearing aids and HAT (assistive listening devices) like my FM system. Ugh. Then I moved on to my iPhone and the Resound hearing aids that I discovered had the t-coil in it and became a promoter of the Induction Hearing loop. It was in 2006, when I participate in a state conference when I was introduced to what it could do for hearing loss people. I could hear on the cell phone. I could hear in a 'looped' room or auditorium or even in a place of worship. I cried for the first time when I could hear EVERYTHING for the first time in my life when in the 'loop.' It changed my life from that day on.
I was a leader in the HLAA/Chapter/State Board world and took it on as a mantel – that if I could tell anyone and everyone about the loop, I would, and I did. I worked on it at the local level as well as the state level. I even put on a state conference which helped to spread the work both by mouth as well as by social media. It was promoted at the National HLAA level then and continues to this day. I presented my Looping conference at the National HLAA convention the following year. Since I walk and talk as a hard of hearing person, I take every opportunity to empower others to learn about how it is to live as a hard of hearing person. Everyone has some type of speed bump in their life. I have deck of them – hearing loss is only one card that I carry. While I may be disability, that hasn't stopped me from doing whatever I wanted to do in this life. I want more looping so I can hear and others can hear too!
There is too much out there to just sit and sulk….just look at the past history and see what other people who have had difficulties and in their lives – see what discoveries have been done or what mountains have been climbed. Anything can be achieved. Not time for dwelling on the past…that is gone. Today matters because tomorrow is coming. Get going…. !!!!

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@nurseheadakes and @bookysue I am hugely impressed by both of you, by what you have accomplished, and by how strong you both are. You are both very motivating.
JK

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We are all here to support each other. Life is hard as a deefie but we must persevere- let people know of our presence as one with hearing issues. It is daunting a lot of times. Lucky hearing aids are getting better- more powerful- phone tech on the go as Nurse shake attest to- cochlear implants which I am toget next year. . I try to engage people with my process with humor- I learned a lot from all of you- brain processing and hearing factors – I learned some of that as I am information gathering on Cohkear implants ( Cohlear company is the best for iPhone connected apps, Advanced Biotics for music)

I grew up with a severely impaired Migraine sufferer mom- depressive too. After divorcing my dad after 38 years – her migraines went away . Does not work for everyone though. I saw how tough it- dark rooms/ caffeine fixes through 2 liters of sodas pop coke… medicine issues – tough bit to go trough. So many advances nowadays. I am 65 .

Take care a. We are there for each other. This site is so helpful.

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Beads up on Advil-they let you know of this too- too much use will impact hearing I live with bad back pain and learn to deal with it by being on the go ( no sitting down all day for me) . I assume all meds to be bad even though I have to take them. I check/recheck interactions . Aspirin is prescribed yet that and pink grapefruit ( one of the few healthy things I like) is bad for osteoporosis pill. I have a great pharmacist who knew I was new to mess – jumped from nothing to 5 meds ..made sure I knew the facts. CVS I knew how bad meds are from my mom who had a bad doc telling her to cut off her her meds at once- ended up in the hoslitical with convulsions and a broken back. I am very careful.

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@bookysue

Beads up on Advil-they let you know of this too- too much use will impact hearing I live with bad back pain and learn to deal with it by being on the go ( no sitting down all day for me) . I assume all meds to be bad even though I have to take them. I check/recheck interactions . Aspirin is prescribed yet that and pink grapefruit ( one of the few healthy things I like) is bad for osteoporosis pill. I have a great pharmacist who knew I was new to mess – jumped from nothing to 5 meds ..made sure I knew the facts. CVS I knew how bad meds are from my mom who had a bad doc telling her to cut off her her meds at once- ended up in the hoslitical with convulsions and a broken back. I am very careful.

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@bookysue You sound like me I hope everyone at this cyber table does there research on drugs and there disease back of whatever .we know our bodies better then Dr and we need to be our own advocate as you are

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@nurseheadakes

Well, you can get some on a CD if you want, but my music is on my iPhone as an app. My hearing aids are Resound hearing aids and their program is on my iPhone 7+. The actual program is found on my cell phone – I have had it for 4 years now and so everything I do with my hearing aids is on the phone. I turn on my hearing aids with the phone. I turn on the four programs with my phone. I switch to either one of the programs depending on where I am like if I am in a restaurant and it's noisy – I put the program for the noise. If I am in a looped church or auditorium, I put the t-coil on and it switches my hearing aids to that program. If I want to tune out my tinnitus – it will switch to the tinnitus program on my iPhone and if I just want the regular program, it changes to the plan program which is the default program. https://www.resound.com/en-us/hearing-aids
I also have a Tinnitus App by Resound that is specific for those who have tinnitus and want a variety of different sounds to pick from. This is a free app that I use intermittently when I want something on other than the radio or TV. I usually use it when I walk and think, or when I am writing.
There are more hearing aids/CIs programs that can be found on cell phones now so that you can stream your conversations and hearing right from the phone. I hear my telephone calls right into my ears when I answer my phone calls. I Facetime with my mom all of the time. It makes it much easier to talk to her since I can see her and hear it much better than in person, since she is in WI and I am in FL.

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@nurseheadakes Do you find that you can hear better on Facetime than on regular phone calls? My son brought that to my attention and then he went further and discovered that if you change a setting on your phone it helps a lot too. It's explained here:
https://support.apple.com/en-us/HT203078

I have done that now and it does help.

You are very fortunate that you can control your migraines. I never could, they were hormonal. Certain foods did exacerbate them when I was at a vulnerable time — chocolate, onions, vinegar — so I avoided them. My daughter now has them and it is possible that some of these factors may contribute to hers, but she is quite diligent in trying to avoid them as best she can. She does use triptans and has had a hearing loss that I recognized when she was 3 years old (she is now in her 30s) but her hearing has not gotten worse using triptans. Her most recent hearing aids are Resound also, and she loves them. I have Oticon Opn1, when I got them were considered to be most advanced in helping with clarity, and they do help but I wish they helped more than they do.
JK

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@contentandwell

@nurseheadakes Do you find that you can hear better on Facetime than on regular phone calls? My son brought that to my attention and then he went further and discovered that if you change a setting on your phone it helps a lot too. It's explained here:
https://support.apple.com/en-us/HT203078

I have done that now and it does help.

You are very fortunate that you can control your migraines. I never could, they were hormonal. Certain foods did exacerbate them when I was at a vulnerable time — chocolate, onions, vinegar — so I avoided them. My daughter now has them and it is possible that some of these factors may contribute to hers, but she is quite diligent in trying to avoid them as best she can. She does use triptans and has had a hearing loss that I recognized when she was 3 years old (she is now in her 30s) but her hearing has not gotten worse using triptans. Her most recent hearing aids are Resound also, and she loves them. I have Oticon Opn1, when I got them were considered to be most advanced in helping with clarity, and they do help but I wish they helped more than they do.
JK

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You know I do hear much better on FaceTime than regular…I did check my iPhone and saw that I do have the LTE on. But I bet my mom's iPhone is not on it. So, I sent out an email to the siblings telling them about this next step so we can all talk better on the phones with each other. (and not get interrupted and I can hear better with them!) YEA!
My daughter inherited the migraines from me – it runs in our family. There are a number of genes that we carry in the genone for the hearing loss and unfortunately she has them as well. We have the cluster type predominately. She also has the hormonal. I never had those kinds. Yes foods were my worse enemies for me but not for her. She is starting on medications now with a new neurologist. She is on Step 1 of the Three Steps to gaining control of one's migraines.
My daughter claims she doesn't have much hearing loss or tinnitus or anything like her mother…just the infertility and migraines. (she was our miracle baby – another long story for another day)
There are many hearing aids on the market now and they all work for the various hearing losses that are out there. The manufacturers make them to be customized to the consumer. The Audiologist help to do that when the consumer comes in for their hearing tests and when they ask for what they want the aids to do for them. These aids are computers and they can do many more things now than they use to….its amazing when you think of it. Mine are $6000 and add the $1000 iPhone and I have a mini computer working in my head so I can hear and talk.

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@nurseheadakes

You know I do hear much better on FaceTime than regular…I did check my iPhone and saw that I do have the LTE on. But I bet my mom's iPhone is not on it. So, I sent out an email to the siblings telling them about this next step so we can all talk better on the phones with each other. (and not get interrupted and I can hear better with them!) YEA!
My daughter inherited the migraines from me – it runs in our family. There are a number of genes that we carry in the genone for the hearing loss and unfortunately she has them as well. We have the cluster type predominately. She also has the hormonal. I never had those kinds. Yes foods were my worse enemies for me but not for her. She is starting on medications now with a new neurologist. She is on Step 1 of the Three Steps to gaining control of one's migraines.
My daughter claims she doesn't have much hearing loss or tinnitus or anything like her mother…just the infertility and migraines. (she was our miracle baby – another long story for another day)
There are many hearing aids on the market now and they all work for the various hearing losses that are out there. The manufacturers make them to be customized to the consumer. The Audiologist help to do that when the consumer comes in for their hearing tests and when they ask for what they want the aids to do for them. These aids are computers and they can do many more things now than they use to….its amazing when you think of it. Mine are $6000 and add the $1000 iPhone and I have a mini computer working in my head so I can hear and talk.

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@nurseheadakes My daughter also inherited migraines from me. When she has one she sometimes call, talking can actually be soothing at times. I always so bad because I know they are in the genes I gave her, and my mother gave to me.

Her hearing loss and mine are opposite though. My hearing was phenomenal when I was young, the loss started in my late 50s. I am wondering now, after reading some of these posts, if ibuprofen could have contributed to it. I had a doctor back then that had me on nine ibuprofen a day.
As I mentioned, I recognized that she had a hearing loss before her doctor did since she would peer at me and say "WHAT?". Her pediatrician said her mind was probably operating on a different level because she was very intelligent and had an active brain, but a mother knows. Fortunately, when she did get diagnosed at age 4 the speech and language tests came back well over age level — I guess I must have been talking pretty loudly.
JK

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As we age, we lose our hearing which is natural. This is called presbycusis. https://www.nidcd.nih.gov/sites/default/files/Content%20Images/presbycusis.pdf

Our genes only are a part of the story. Hearing loss can be caused by so many factors for the young all the way up to the young at heart (elderly). https://www.mayoclinic.org/diseases-conditions/hearing-loss/symptoms-causes/syc-20373072 [Causes]
It would be good to familiaze yourself and your family with how your two ears deal with sounds/noises and how you can prevent any further destruction of what you have now. We can't grow any new hair cells but we can save what we have for now.
Today our kids have it much better than we did since the knowledge and technology is available to give kids tools to hear and understand speech. The cochlear implant, BAHAs implants and digital hearing aids give them realistic tools that help them learn language and sounds that their brains can detect and use. That was something I never had when growing up all those years ago in the 1950's. Back then, I was deaf…period.
Did you know they are implanting 6 month old children with the CI's now? Because it is so successful and because their brains advance so fast, the surgeons are conducting their research as they are implanting. THEY are approved by the FDA as they move along the continuum. Attending the HLAA national conventions – give you detailed information on how this progression is taking place and where we are heading in discovering the hows/whats of tinnitus, vertigo, types of hearing loss and ways to prevent these or even how to eliminate these afflictions.

These are exciting times and that is why everyone with hearing loss should be involved in any of the different organizations to keep up to date with what is happening on the national level. Learn about what type of instrument you wear in your ear. Join a chapter and organization. Seek out the blogs and online internet social websites to discover a world that is ever changing – for the good. Contribute to it because this is YOU. Your feedback and contributions will help not only you but your family, your children and our say in the matters that mean much to us.
Mountains aren't moved with a bulldozer but with a single stone. I have been working with one diamond at a time. How about you?

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How does hearing loss change me? I have much more empathy for all people who are somehow 'different'.

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Hearing loss has increased my isolation and depression. I’m still fretting (in the wee hours) over being out last night for dinner w 8 family members. Not being able to understand most of what was said in the noisy calliope of sounds got to me more than usual. No one except those of us with hearing loss understand… we can’t process more than one sound at a time. I’m tired of being assaulted with an arcade of sounds.

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Judy, I would have to agree with you about the isolation and depression. Being a people person, the isolation is really tough, and it is actually horrible that sometimes I actually prefer it over the crowds, because of my profound hearing loss.
I, too, was with 8 family members last night. We were in at a restaurant. It is so difficult to understand the group. Talk about exhausting. Then on top of that I have got my Mother looking at me asking me several times, "Are you okay?" You know how intuitive a Mother can be. Well, I can't really truthfully answer her right then and there.
Even though it is so difficult for people like you and I to get out in restaurants or any type of crowd, I am glad we both went. I'm like you, it makes us so sad. But, we still have to do it. Thank God for family, and Thank God for groups like this. Take care. -JoAngela

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Sorry to hear about your declining hearing (which I too have experienced though my hearing was normal until my 60's). Are you considering a cochlear implant?

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