Profoundly (?) Deaf at 21, Feeling Socially Isolated and Anxious About My Future...

When I was 16, I awoke with a feeling of stuffiness in my left ear. The world sounded more muffled than it used to. The ENT specialist took an audiogram and apparently I was suffering from a precipitously sloping high frequency sensorineural hearing loss. We could not determine a cause; I hadn't had exposure to much excessive loud noise save for my share of a few pop-punk concerts (pop-punk, not hard rock or heavy metal, mind you...and my audiogram pattern did not reflect the characteristic "notches" typically present in noise-induced loss), I had not taken any ototoxic drugs, and nobody in my family had experienced hearing loss at such a young age. I even later had an MRI done to rule out the possibility type 2 neurofibromatosis (tumors along the auditory nerve).

My left ear was severely affected--I was only able to detect up to about 2 kHz in that ear. My right ear was also apparently bad, only able to hear up to about 8 kHz. I was still able to understand conversations fine for the most part, so I didn't see much need for hearing aids. Not then, at least. I also began suffering from tinnitus, though I had largely learned to ignore it. We decided to just continue monitoring my hearing for changes.

Fast forward five years later, I felt my hearing loss had inexplicably exacerbated even further. A visit to the ENT told me my right ear, which I had been reliant on up to that point, was now only able to hear up to 2 kHz. My left ear had declined too, now down to 1 kHz. I had pretty much lost 90% of my hearing, and now it is beginning to affect my quality of living. I am constantly struggling to understand people in noisy environments, whether it be at parties, bars, or even over the hum of a car engine. I can't understand whispers or the voices of children or occasionally, females. I need subtitles for TV shows, movies, and video games. Given the precipitously sloping nature of my hearing loss--normal (above average, actually) hearing at low to mid frequencies, but sharply dropping off at high frequencies-- everything seems to be the appropriate volume, but it all lacks clarity. Context and lip-reading help, but it only gets me so far. Even music has lost its appeal to me; it lacks the rich timbre it once had and even worsens the ringing in my ears. Not being able to enjoy music is an especially hard blow, as an audiophile who insists on listening to quality sources through quality headphones and as a musician who pays more attention to instrumentation than the casual listener.

To make matters worse, my once-bearable tinnitus is now affecting my quality of life as well. Whenever I'm stressed out, it grows louder and more unbearable. It's distracting me from my studies. Reading that tinnitus can drive people to the brink of suicide isn't offering me any solace.

My ENT still hasn't been able to pinpoint a cause, nor does he seem very interested in finding one. It wasn't until I had inquired about the possibility of NF2 that he had an MRI ordered, and when the scans came back normal, he simply whisked me away and told me to come back to have my hearing checked in a year. I know finding the cause isn't really their specialty, but this is very frustrating to say the least.

I've been visiting an audiologist and am currently demoing a pair of hearing aids with custom ear molds. We haven't done any fine-tuning on this pair yet, but my audiologist warns me that fitting will be a challenge due to the nature of my hearing loss. And it makes sense...how much can they possibly help if all they do is amplify frequencies I'm incapable of detecting to begin with? And I don't want cochlear implants due to the invasive nature of the procedure, their many limitations, the long adjustment period, and the fact that they would destroy whatever was left of my natural hearing. I would have to take time off work and school, and the latter isn't really an option considering I am in a rigorous direct six-year pharmacy program, and will be part of the last class to graduate from that program. I suppose I'm holding out hope for some novel therapy to arrive--some way to regenerate my damaged cochlear cells. But I've been doing my reading and it seems that there are still many hurdles and that clinical trials aren't expected to start for another decade or so...I'll be beyond my youth by the time a therapy hits the market. Unless an optimistic soul can tell me otherwise?

I am socially isolated and devastated. "What have I done to deserve this? There are people who perform at 100-decibel concerts every night for a living, people who attend raves and night clubs without hearing protection several nights out of the week, people who crank their music full blast, people who fire guns recreationally...and their hearing is still better than mine. I am way too young for this to happen," I keep telling myself. I had a whole social life and career ahead of me. But now, keeping up with conversations in a social setting is a challenge, and I'd rather smile and nod when I do not understand something (which was often the inappropriate response) rather than ask someone to repeat themselves for the fifth time (after which they give up and moved on). It makes me come across as cold and insincere. And I avoid telling people about my disability out of fear of the stigma attached to it, especially for someone at such a young age. I now prefer to just keep to myself in these environments or avoid them altogether. As someone who is deaf-but-not-quite, I didn't feel I belong in either the world of the hearing nor the deaf community. I am also anxious about my career as a future pharmacist, where I may have to work in a noisy setting with the constant ringing of telephones, drive-thru bells, and pills shaking in bottles, where incorrectly transcribing a verbal order over the phone could lead to workflow inefficiencies or worse--the death of a patient. I am fortunate enough to have my mother, a loving girlfriend, and a few close friends to support me, but even then I can't help but feel disconnected. And to think my hearing can only get worse...I don't think I'm depressed yet, but constantly agonizing about this and spending hours upon hours futilely searching for a cause or cure is likely not good for my health or productivity.

I know it's a long shot, but does anyone have any idea what could be causing my hearing loss? Know something that my ENT doesn't? Know about advances in novel cochlear regeneration therapies? Dealing with tinnitus? Advice or coping strategies for a young millennial whose life is getting turned upside-down thanks to this debilitating condition? Anything...?

 

Man that's a tough nut to crack at such a young age. I can't offer you any advice on the hearing loss, but from what i know, it seems you would be a good candidate for a cochlear implant.

 

@omgitsrichie ,
I'm sorry that you are dealing with all of this at such a young age. You do not deserve this. Unfortunately, bad things just happen. I don't think you should avoid revealing your hearing disability to others due to stigma. You should wear your it like a badge of honor because you are strong to live with it. Upon graduation, you will not be the only hearing impaired pharmacist in our country. You will just have to find the right setting and you may have to exercise your rights under the American Disabilities Act for accommodations. I hope the hearing aids will help and I am glad that you have family and friends who support you.

 

Hi Richie,

Welcome to the forum!

You expressed your thoughts exceptionally well in that post. Sorry to learn of this situation.

First and foremost, it is good that you have such a support system to help you out and move ahead!

In your case, you are doing great! You are focused on your career despite the setbacks, and that takes a lot of mental and emotional strength... more than many of us will ever know! You are studying to be a pharmacist, which is no easy task as you need to really hit the books and know your chemistry inside and out. Plus, you are able to set aside time for a girlfriend! Good for you!

Regarding the latest news regarding hearing loss... Unfortunately, things move very slow in this arena it seems, unless the FDA designates a therapy as a "breakthrough" and fast-tracks it through the process like they did with the Hep-C drug that cures 99.9% of people.

Here is a link to an interesting project about mapping the human brain: http://www.livescience.com/56520-human-cell-atlas.html

Once this initiative is finished, it could prove to be the turning point and enable life-saving medical breakthroughs. Of course the key is to be patient in the interim.

As for hearing aids, do not worry! If you are troubled by their appearance, you can always grow out your hair. <grin> The most important thing is that they can give you a better quality of life!

Hang in there! You are doing great!

 

Maybe a weird question.. are you one of those people who when they sneeze, they keep their nose closed with fingers?