Hearing Loss: Come introduce yourself and connect with others

Unfortunately people without hearing loss don't understand that hearing aids don't "fix" hearing loss. We still need people to face us, minimize background noise, etc. Hearing loss is frustrating in relationships with families and friends. As a resource, you might check out Michael Harvey's book "Listen with the Heart: Relationships and Hearing Loss."

Hello! I'm not sure if this group is still active or not, but I thought I'd try it! Since 2017 I have slowly been experiencing hearing loss. I finally requested my records from my ENT and it says I have mild progressive bilateral sensorineural hearing loss and tinnitus. In the past 7 years it has declined each visit. This last visit has seemed the biggest jump so far (but not terribly significant right now) my ENT referred me to the hearing aid clinic for an evaluation. High and low frequencies seem to be the worst for me, but I'm not sure what the type of my loss is called. I have diagnosed EDS and suspected Mitochondrial issues (along with a list of other diagnosis) and my doctor assumed one or both of those is the culprit as I am 24 (so not from age).

My main question is, what is other people's experience with progressive sensorineural hearing loss? Does their hearing continue to deteriorate? How quickly?

I know everyone is different, but I'm just trying to get a little insight on others experiences because I feel a little clueless!

That is so true. Some people get frustrated with me when i tell them i cant understand them unless we are face to face. They bring up the fact that i have hearing aids. They just don't, and cant, get it.

@ameliabrinker

Hello
For reference I have had bilateral sensorineural hearing loss for 40+ years and wear two Phonak Behind the Ear hearing aids.....also have tinnitus.

First, yes, EDS can cause hearing loss . Most people have sensorineural hearing loss with a loss in the high frequency range which is where speech perception comes into play. Some have just conductive low frequency loss and others, like yourself have a mix of the two. I suspect at this point I probably have a mix but my loss is concentrated in the high range.

Tinnitus seems to come more often with hearing loss and that is a separate subject for you at this time.

Hearing loss tends to deteriorate....how quickly that occurs is different for all of us. However,
assuming your loss will continue to deteriorate, it is imperative that you do start to wear hearing aids in order to keep the inner hair cells that you have stimulated and active. The best type of hearing aids are BTEs....behind the ears....for high frequency loss. An Audiologist will advise on the different types.

A crucial point for you is connecting with a certified Audiologist...either an independent provider or one associated with a reputable ENT practice. I prefer an audiologist associated with an ENT practice. When you do chose an ENT practice, visit an Otolaryngologist first who should physically examine your ears for any wax buildup or other impediments and have those ears cleaned on a regular basis. Then see an audiologist within the practice. This is where the tricky part can come in. You need to like and have a good rapport with your Audi. If you don't, then see another one, within or outside of the practice. Find one who you like and feel will do the most for you.

When you get to the point of deciding which type and brand of hearing aid would work best for you there are certain things to be aware of. Not all types and brands will be the best for you and it involves trial and error. You may have to try several types and brands. There is normally a 30 day trial period so, if you are not happy with them you don't have to keep them after 30 days.
Some Audis have a biased preference for one brand... Also be aware, there will likely be many adjustments needed before you decide to commit to buying. Also, they are expensive. When you get to his point, write back and someone here will guide you through what to expect. You should read (there are an awful lot) of comments on this site for people new to hearing loss and as well as excellent advice from long time users.

The takeaway is.....Don't delay about wearing hearing aids....if you know someone who does, ask for their experience and maybe take them with you on your first appointment. You are in the driver's seat when you choose an Audiologist or hearing aid. Read all about hearing loss on this site and on Dr Goggle just to get a feel of what this is all about. This site offers personal experiences which you can't get elsewhere.

Don't be shy about wearing aids....who really cares? Don't delay. Please don't visit a place like Beltone that sells aids...their people are not audiologists. However, many people here on this site have had good experiences with Costco.
Cochlear implants may be in your future but for now, it sounds like some type of aid most likely will benefit you right now.

I hope I didn't throw too much at you but being new to hearing loss is not easy to navigate at first. I still meet people in my age group (I am 83) who are wearing aids for the first time an haven't a clue on how to take care of them or what the parts of the aids are. Also, I have friends who need them...have needed them for years...and still say they are fine. Its' usually a subtle loss
as opposed to those who have a sudden loss.

FL Mary.....hang in there on your journey

You definitely didn't throw too much at me. I really appreciate all of the insight. I'm trying to get as much info/ experience/ advice as possible! In your experience, has wearing hearing aids slowed down your progression? My ENT said that it could but I didn't know if that was actually true or if he was meaning what you were saying about using and stimulating the things that were still functioning. Also, if you don't mind me asking, has your hearing loss been a steady progression over time or has it varied? (I know everyone is very different. It just helps me to see other people's experience over time with the same type of hearing loss)

The audiologist I will be seeing is in my ENT office and they have checked my ears for wax and such which is good!

Thank you for the advice of finding an audiologist who I like. I have had bad experiences with doctors in the past so there are times I've just given up if I don't vibe with the specific doctor. I looked up what brands the office uses of hearing aids and it seems they use 5 different brands.

My dad is one of the only people I am close with that has them. He only just got them though and I believe his audio gram is the opposite of mine.

I'm definitely not opposed to hearing aids. Even though I'm only 24 I already use medical devices (feeding tube, wheelchair, ankle braces, service dog). I don't necessarily want hearing aids but I'm already noticing the loss of hearing even though it's mild right now and I'm frustrated with not being able to hear things/ people. I also feel like it would be easier one I am hopefully more connected with people who are dealing with the same thing!

Thank you so much! Feel free to ignore this if I've asked too many personal questions!

@ameliabrinker

Never too many questions. You know you hear with your brain. Do hearing aids slow down the progression of hearing loss. No, they won't prevent or slow down the progression but that is a complex area and depends on the underlying cause. Auditory processing parts of the brain begin to atrophy which decreases your comprehension of speech...over time. Hearing aids will will keep your brain active and help slow down the loss of understanding ....not the progression if that makes sense. I hope I am phrasing this correctly.

Loss of understanding or speech comprehension will occur over time...how fast is individual. The biggest misconception of wearing hearing aids is that you will be able to understand everything and hear everything.
I hear just about everything but my comprehension at this point is almost nil unless I am facing the person and in a somewhat quiet environment. I can't pull out speech in a noisy environment...it all sounds the same. I don't know where a lot of sounds are coming from. You become very adept at adapting and navigating life and being an advocate for your own loss. I am always upfront. I have used the phrase "deaf" when I am out in the world...people don't understand "hard of hearing" which I hate anyway. If you say "deaf" (with a small d as opposed to culturally deaf) it gets the attention you need

What you can do is absolutely avoid loud noises....turn those aids off if you have to depending on the environment. Loud noises will kill those remaining hair cells. My aids have an automatic shut off if the environment is too loud. It has happened at inopportune times on occasion.

I had mild hearing loss in my early 40s...started not to understand loudspeakers, soft voices on the phone. It has
been a steady progression to profound despite the best hearing aids being worn constantly. There was never an
underlying physical cause..it just happened over the years. There are no family members with hearing loss, just the small age related problems with my parents who heard so much better than me. So I have had time to adjust to the loss. Fortunately, today there are so many assisted listening devices....I use a speech to text app on my Android phone and also
Innocaption+ for my cell phone. Other people used a variety of mics which never worked for me. I also was never opposed to wearing hearing aids and, when I lived in NY, one Doctor said there was nothing wrong with my hearing and dismissed my concerns.

I have done all the tests and been to so many providers over the years and read so many papers about hearing loss and still do to this day. Some day they will be able to reproduce the cilia or inner hair cells that sound travels over or even maybe a 3D ear. Now that's fun to think about. Anyway, you are fortunate to have access to all the accommodations and technical gizmos as you start your journey. I remember my first captioned tv show...wowza.

I assume you are use to advocating for yourself. Hearing loss is hard because it is an invisible "handicap". Frankly there are more accommodations for the culturally deaf then there are for the 30 million with some degree of hearing loss which makes it difficult for some to navigate through life. Most people wait too long for their first aid...so happy you are not waiting and realize the importance of addressing it now.

Off my soapbox for the night. Chime in anytime...this is a subject close to my heart . You will also find yourself more tired at the end of the day...comes with struggling to hear.

Happy hearing
FL Mary....ps not looking this over for typos...long day...

Huh? You say something?

@ameliabrinker You are getting good information from FL Mary, so I won't go there with similar information. My HL was diagnosed when I was 22 years old. I suspect it was there in my teens, but not serious enough to notice it. The medical doctors who diagnosed it said there was no known cause, and also no solution. That was in the 1960s. A lot has changed since then.

Today I benefit from a cochlear implant and a hearing aid that work together.

My experience after diagnosis was that my ability to hear declined gradually. By the time I was in my mid-30s I was struggling. Hearing aids had improved by then and I was fitted with one; only one. I should have been fitted with two. Time passed, I discovered hearing assistive technology that helped me beyond that hearing aid. Today's tech is superior to what I used. When getting hearing aids I strongly recommend you insist on telecoils and BlueTooth. Ask about remote microphones and other devices that bring sound directly to your personal hearing aids. They can keep you in the hearing mainstream. Unfortunately, providers do not always share this information as it takes time. It should be demonstrated, not just mentioned.

Most important, take care of the hearing that you have. Stay away from loud noises unless you use professionally fit ear plugs. Excess noise can exacerbate hearing loss. I know that exposure to loud sounds including rock music, hunting with my father, and teaching in a loud gymnasium likely moved me forward on the hearing loss spectrum faster than if I had not been exposed to those loud sounds. We know that excess noise is the most common cause of hearing loss. Also, that it is a preventable cause. Protect the hearing you have!

Take care and think positive. Today's research has made a positive difference. Tomorrow's research may ultimately find a way to regrow the hair cells in the cochlea that are gradually destroyed as hearing loss becomes more pronounced.

Good luck to you. You are wise to be asking questions now.

Thank you so much for sharing and for your additional advice!!

That was a lot to digest in the comments of people on the site.
I was curious if you have heard of low E Bluetooth and Auracast. I am 73 and for the most part getting along pretty well with my new hearing aids. I have found that each generation of hearing aids are somewhat better.
I read that in England they had a human trial trying to regrow hair cells. It seems like they have succeeded with adult mice. Do you think they will ultimately succeed and if so how long will it take?
So many people I know have replacement knees and hips and yet restoring human hearing seems to be so hard.
I would love to hear from you being the mentor of the group and anyone else that reads my post.
One thing that has become abundantly clear is that there are many ways that people can lose their hearing. I just assumed it was genetic.