I have a high frequency hearing loss, diagnosed in my early twenties but it probably started as a teenager. For a long time I didn’t really know what it meant except that I couldn’t hear a lot of bugs or birds anymore. In the late 90’s, I found the SayWhatClub and found out it’s called a sensorineural hearing loss but it took me about another ten years to fully understand my kind of hearing loss. It’s a mixed bag of hearing and hard to describe to others. I hear… but I can’t hear. I hear you talking… but I can’t understand what you’re saying.
It’s like filling in crossword puzzles at the speed of sound.
While reading a book a few years ago, Missing Words by Kay Thomsett and Eve Nickerson, I finally understood why word discrimination is so damn hard for me. In our alphabet, vowels come across in the lower tones while many consonants are in the higher frequencies. The light went on and I know I get only pieces of words now. It’s like filling in crossword puzzles at the speed of sound. Or as I said in another post, conversations turn into the Wheel of Fortune with me racing to fill in the missing letters. No wonder I get so tired, straining to hear people hours on end. It’s mentally exhausting doing this for any length of time. And this is with my hearing aids. After sounds are gone, they’re gone. (Hearing aids aren’t called hearing miracles for a reason.)
I’m lucky enough to live in Salt Lake City now with one of the best d/Deaf and hard of hearing centers in the country. The Sanderson Center continually offers us free workshops and classes to attend. We also hold our local HLAA chapter meetings there and one night, the hard of hearing specialist from the center talked to us about reading our audiograms, something else I never fully understood.
She passed out a childs audiogram with some of the alphabet on it and pictures of noises. Then we penciled in our personal audiograms. She said whatever was above our line, we couldn’t hear well. What’s below the line, we can hear. It took me a minute to understand that since my line drops down. I had to mentally raise the line first to comprehend below the line. Ohhh! The light went on again. Here’s proof of what I hear and don’t hear on a piece of paper.
I have a mild loss in the low tones (it dropped from normal for the first time) and a profound loss in the high frequencies. People like to call it a classic ski slope loss. Since I ski, I tell people it’s a black run (steep slope). Just look at the wonderful things I get to hear: guns, horns, planes, jackhammers and lawn mowers. Now look at what I miss: whispers, clocks and many alarms/timers, leaves rustling in the wind, lots of letters in the alphabet and casual conversation.
Our hard of hearing specialist also passed out the speech banana audiogram. I drew my black run ski slope into it to better understand my hearing. Now I can exactly what I miss and why word discrimination is such a challenge at times.
Sometimes, pictures are worth a thousand words. After having this sensorineural hearing loss most of my life, I finally understand what it means. I can now tell people exactly how I hear.
I totally understand this. We are nearly audiogram twins. Hearing loss is so misunderstood by a lot of people.
Is so important to have some understanding about your hearing loss so that you can address it if need be.
Yes and it took me too long to figure it out! 🙂
Sent from my finger pecking iPhone
Chelle – Great post! It seems our hearing loss stories are similar. I was diagnosed with progressive high frequency hearing loss at age 27. I was a new mom with a new job, and I was terrified. Eleven years and two more kids later, I still find myself treading the uncertain waters of hearing loss. I blog at http://LipreadingMom.com.
Blessings,
Shanna
I was 23 yrs old when I bought my first pair of hearing aids. I had two kids plus one more later. None of my kids know me without hearing aids/hearing loss. At that time, I had just moved across the country from California to Georgia and a year and half later, moved back to California. I started working in a salon once back home and knew nothing of hearing loss except to wear my hearing aids. I thought that was supposed to solve it all. Ha ha.
What a journey it has been, peppered with lots of learning experiences. It’s now twenty one years since my first pair of hearing aids and the learning hasn’t stopped. 🙂
Chelle – Glad to meet you online. Thanks for following me at LipreadingMom.com!
Shanna
Chelle- Thanks for the post, I’m in my early 30s and have the classic ski slope too, starting at 1000hz and dropping to 70db at 2000hz and 90db at 6000hz. Its always reassuring to find people with hearing loss (and stories) similar to mine. I think that losses like these are hard to accept because you can still hear so much and that makes it hard to believe there is a whole range of sounds that I’m not hearing.
That said, has anyone ever gotten a good explanation from their doctor about why this is happening? I’m going back to the ENT tomorrow, but they only explanation I’ve ever gotten is a generic “genetics and exposure to loud noises, probably”. Is it unreasonable to expect a better explanation from the doctor?
It’s very disappointing but I think that’s what a lot of people get… cause unknown. It certainly isn’t genetics in my family because I’m the only one with a hearing loss in my family. One ENT went over my history with loud noises and said he didn’t know why either. “Just one of those things,” he said as he shrugged his shoulders. That was about 20 years ago. I’ve accepted it now but it would be nice to know why.
Sometimes it surprises me what I do hear… and other days I’m a little shocked at how muted the world is. When I’m relaxed my lip reading ability is decent and my prediction of situations (paper or plastic) make me seem hearing than I am. Then all of a sudden a question comes at me I don’t expect (would you like curb side service?) and I barely tread water at that point. Even though I understand my hearing, it’s hard to describe it to others in the few minutes I have with them. I get a lot of confused looks.
My six year old son has been diagnosed with mild high frequency hearing loss. The posts help me better understand his situation. Thank you for sharing.
You are welcome. I’m glad you found some understanding. Thank you for taking time to leave a comment. Best wishes to you and your son.
My 5 year old daughter failed two hearing tests at her school, which is not uncommon and we laughed it off and said the only hearing difficulty she has is selective deafness but i was told she had to go for another test which i took her to yesterday and was told she has high frequency hearing loss and has to be re tested in six months to see it it’s getting worse. There are no deaf or HoH in my family but i do know BSL ( British sign language ) as it was always something that interested me ….. so glad that i took the time to learn it now as regardless of what happens in the future i will be able to communicate with her i’m now making sure that the rest of the family learn to sign just in case. Thank you for posting your experience on here as it explains why she is behind in reading and her lessons … we thought she was day dreaming and not concentrating when in the class room, she works well in the extra one to one lessons she is getting but not when she has the distractions of the others in class now i understand why and luckily she is in a school that will accommodate her hearing abilities.
One on one is a lot easier for me than a group setting. I don’t know how classrooms are set up these days but they used to be acoustic nightmares. Acoustics can make or break my high frequency hearing loss too.
I sure wish my family had learned some sign language. Every little bit helps and sign is nice to aid conversation. You are doing a great job! I’m glad to hear from you.
Hi,
I was diagnosed with high frequency hearing loss in both ears (mild to moderate but with a very odd line on my audiogram lol)….the doctors think I may have been losing my hearing since the age of 14 and its gradually getting worse but they don’t know the cause. It’s fraustrating me so much and I don’t know where to go to get support (I’m in south east England)…..your blog is brilliant to read, it’s nice to know there are others out there that are losing their hearing at a fairly early age.
It is frustrating. For years I didn’t know why I was losing my hearing and it really bothered me. I started losing mine at 14 years old a little at a time too and little by little it continued to go. We didn’t know until I was in m very early 20’s though but looking back we could see it. After 20 something years of wearing hearing aids, I don’t care for the why so much as how to keep living and dealing with it the best I can. Being able to describe how I hear helped a lot.
Thank for dropping by and leaving a comment. It’s always nice to know we’re not alone.
Hi All. This is me! I have normal low frequencies and then starts dropping at about 750, and flat lines by 1.5- sharp slope! I am just wondering if any of you have been recommended a Cochlear implant? That is what now specialists are suggesting for me. Hearing Aides have never really helped? Love to know whether you have all been down that path??
I have been wearing hearing aids for almost 25 years so I guess I’m used to them. My recent hearing aids, after 6 months of working with them, brought a 22% gain in word discrimination. I went from 50% to 72% which is a number I haven’t seen in years. Before these hearing aids, I was borderline for a cochlear implant but it wasn’t something anyone pushed. I have not tested for cochlear implant yet and am quite happy with these hearing aids. If I should lose more hearing (been holding steady for 6 years now) then I might have to think about it.
i have a ski slope hearing problem in both ear mild to moderate diagnosed recently from 35 db at 250 htz to 50 db at 1000 htz -2000 htz and then 90 db at 6000 htz.
I have difficulty in whispers I just purchased a programmable hearing aid. kindly tell me for fine tuning the hearing aid for more clarity on whisper sound do I increase the high frequency loss area ie 2000 htz to 8000 htz area of the audiogram.
My audiologist is is tinkering with the low frequency area gain where static noise is increasing and very minor clarity in whisper words. Do I suggest him slight increase in 2000 htz-8000 htz range.
Kindly suggest and clarify audiogram adjustment.
The email notice for this reply was sent to a different folder in my email, sorry for the delayed reply. I’m not knowledgeable in programming the hearing aids themselves, I just go back with a list of noises I think I’m missing and noises that bother me and let my audiologist figure it out. I have a moderate/severe hearing loss which my high frequencies completely gone. (My audiogram goes from mild to profound.) I can’t hear whispers no matter what anymore, hearing aids in or out. I miss whispers but it’s been so many years that I don’t dwell on it anymore. I remember how difficult it is to lose it, how upsetting. My best wishes to you.
I’m so glad I’ve just read this! I was diagnosed with a bilateral high frequency hearing loss from a routine school hearing test, aged 8. Nothing was ever done about it. After struggling on for years and developing great lip reading skills, aged 22 I requested that my GP refer me back to an Audiologist. My hearing had become worse and I tried a hearing aid. I absolutely hated it! My mum was with me when they turned it on and she sounded so different, everything was amplified and it scared me. I decided I was happier in my quiet little world! It has hindered my career though… I (did) work in operating theatres on the surgical team but with the whole team wearing mouth masks, the strain became too much. I generally feel exhausted if I’m in any company and avoid phone calls! I did giggle at the mention of not hearing the alarm clock (my family just cannot understand the fact I don’t hear alarms!).
I’m now 35 and once again considering an aid, maybe they have developed them since I last tried one 13 years ago!
Ps. There was only one theory given to my Mum when they first discovered my hearing loss, possibly from having antibiotics when very young
Hi My name is Ilana I live New Zealand. I have only found out not even 2 months ago that I have a unilateral loss mild-moderate and missing many of the high frequency sounds. Its be a roller coaster adapting to aids..I feel I am used to them but still really struggle to hear people, forget whispering I’ll respond with ‘Deaf nod’. I hope this would have improved with aids and it hasn’t. I feel as if even the people close to me feel bothered by me asking the to turn and face me when they talk, or I’m asking them to repeat too often.
I live in a hearing world, and feel like an outside intruder in the ‘Deaf world’ as I don’t use NZSL (sign) and to be honest it makes me anxious that I can’t fluently sign as I would like.
My daughter has a mild-moderate unilateral loss, and I have been advocating for her ‘needs’ for years, but when it comes to me I’m not so forthcoming.
I don’t know how long its been that I’ve losing me hearing, It all feels normal. Accept now when I take me aids off I realise how Deaf I feel…and that saddens me.
How can I be the best role model for my child when I struggle so much with my own hearing loss?
My kids grew up with me as hard of hearing, they never knew me as hearing and they are all in their 20’s now. I think my hearing loss made them better people. Never worry about that, just follow some of the steps I list below and you will be an excellent role model.
I’m learning sign language but it’s a long, long road. I’m not anywhere near fluent. My husband won’t learn sign language but I did make him learn the alphabet so he would spell words I was stuck on. Every little bit helps. My husband still talks from the other room and forgets to get my attention to get my attention before speaking but not as often as he used to. It took about 6 years of constant training to get that narrowed down somewhat. Sigh. Some people learn faster but my husband is ADD and has a tendency to just blurt things out. That is a part of his disability so I have accept some of that. What I do is stay where I am and let him come to me to tell me again. Or if I’m not doing anything, I will go to him. Keep reminding people you can’t hear well and tell them what you need in the most polite way you can until they get it. Sometimes throwing a fit is necessary too, lol, but I don’t do it often.
For a long time I thought there was something wrong with me because my high dollar hearing aids didn’t cure all my hearing loss issues. People would still ask me, “Are your ears on?” Yes they were one and I still couldn’t understand them! I bluffed a lot back then too because I still couldn’t hear. Hearing aids aren’t call hearing miracles for a reason. Hearing aids help a high frequency hearing loss but does not bring it back back to normal. I have a 30% word discrimination without hearing aids and about 60% with. It’s a lot easier to fill in the gaps with only 30% than it is at 70%.
Hearing aids are only part of the solution. Education is the part. Know what kind of hearing loss you have and how it affects your understanding of conversation. You miss certain consonants in conversation so words are full of holes. You hear voices but can’t understand the words. Learn about and use assistive listening devices to bridge the distance gap (hearing aids are only good in a 4-6 foot range). Learning to advocate for yourself is the next step. “I’m sorry, I can hear voices but I use lipreading too so please face me.” (Or whatever you are comfortable with telling people.) Most hard of hearing people use lipreading whether they know it or not. Plus! When people look right at your, it delivers the sound better. Being upfront about your hearing loss will help too.
I think my son is having some of the same issues. He can’t hear some sounds that well anymore and we are a little worried. I think that it’s time to go in for an exam to see what’s going on.