How Do You Live with Hyperacusis? Impact on Your Job/Studies? How Are Things Different Now?

Hi, all. I just gotta know, how do you live with hyperacusis?

I'm 19 (turning 20 in a couple weeks), living in NSW, Australia, currently studying an IT Diploma online at home. I'm looking at job ads online every single day as I just wanna get out there and start working again, but basically every single one is in a location where my ears won't be able to handle. I worked as a Christmas casual in retail for a couple months over Christmas and since I finished there, I developed mild hyperacusis, moderate-intense tinnitus, TTTS and slight diplacusis.

I'm learning to cope with the tinnitus by just not focusing on it and going about my day, but as you all know, the same can't be done with hyperacusis (I've found, at least).

How did hyperacusis impact your job? How did it impact your studies? How did things change for you?

I've purchased earplugs that lower the sound level a little bit, but I'm still nowhere near being able to work in a shopping mall (which is what my area predominantly consists of), let alone step inside one as of yet.

I'd like to hear everyone's thoughts, but if any of you are the same age as me (in uni, working part-time, etc) and could share some insight, that would be amazing.

I guess, above all else, the scariest part of this is that I've got these conditions and I'm only just starting my actual life as I recently graduated school. It's hard to think about what the future looks like for me right now.

Cheers.

- S

 

Hey bro,

I use WNGs (White Noise Generators) which significantly help my Hyperacusis. There's other members on here who have the same. You need to wear them for around 8 hours a day and they play a constant white noise into your ears at a low volume.

I'm not an expert so won't go into the science behind it all and make a fool of myself but if this is an option over in Oz, I'd definitely suggest going with it!

Cheers,
Jack

 

I had very severy hyperacusis and had to stopped working completely for a while. Then I came back to a full time job. We just bear the pain and deal with it the best we can, but you cannot avoid sound completely, or situations that are going to be uncomfortable or damage your hearing. You can use earplugs, try to work less, or part time, but in the end, we all have to live around the noise that others produce.

You are lucky in the sense that at least you live in a proper and really good country like Australia, with good salaries and a lot of work and opportunities.

Maybe it is just this first stage with hyperacusis which is going to be more challenging, and in a few months you will get used to it, or find ways to adapt.

Best!

 

Now that my hyperacusis got severe I'm going to take a break from university studies and focus on staying in silence indoors and hope it gets better. This really has impacted my life so much I don't even know how to go on.

 

Rest... Talk to your family.
New therapies may benefit you.
Stay strong, may the force be with you.

 

Unfortunately my right ear is so bad now that i cant stand talking. I might have to learn sign language lol. But thank you ♥️

 

It can potentially get much better. When mine started I wore earplugs when I cooked in my own kitchen and was irritated by running water. Gradually exposing myself to louder sounds again seemed to be my antidote but it took nearly a year.

I was very anxious and worried how I could ever work again. Now I’ve been doing journalist work in loud protests and I’m mostly fine. I try to stay away from megaphones and sometimes throw in earplugs when it’s consistently too loud.

Also I had TTTS for a month and it resolved.

 

They don't live with it. They just suffer.

They also lie to themselves they are doing better when they are not. It's a psychological tactic they use to deceive themselves to keep going.

 

That sounds like a good idea. Sometimes one needs time to recover.

 

Just make sure your loved ones understand. The Gaby, Dutch lady video, is informative. Any videos from this site will help your family understand.
My kids were the first to understand.
Now thank fuck, my wife and mother and extended family get it.

There are surgeries, but wait, heal, exercise, protect.

You are not alone and things will get better friend.
Sincerely, Daniel

 

Thank you, i hope you get better too!

 

Didn't your hyperacusis get better or go away completely? Are you just lying to yourself that it's better?

 

I still get unexplained facial paraylsis/heaviness and tooth aches from noise. Even soft noises can trigger it.

 

I think it's unfortunately a lot to ask for any of us to completely recover, but based on posts I've seen from you, you did get better regarding some of your symptoms right? I just don't think telling people that everyone just suffers and you're lying to yourself if you feel improving symptoms is really helping anyone.

And do you have TTTS? The tooth ache and heaviness thing I somewhat have too, I think it's due to TTTS for me.

 

The middle ear muscle spasms went away, the trigeminal nerve problems presist to this day.

These issues are total medical mysteries. Hyperacus is not a diagnosis. It has no specialist and it has no understanding outside of the pretenders. Hyperacusis is at least five or more separate hearing problems that all get lumped together.

 

Have you tried any medications or treatment for trigeminal nerve pain? I haven't yet but it was suggested to me by my audiologist.

 

they don't recognize the problem as trigeminal nerve pain. It still gets misdiagnosed as TMJ. It's clear this problem does interact with people who already have TMJ.

 

Audiologist and ENT's are a help to us for one simple reason. Our disabilities are rare and fall into the realm of obscurity.

We can't get upset when doctors are not familiar with a rare poorly researched disease. I wonder if there are other rare diseases that get frequently misdiagnosed as something else?

 

That depends on your audiologist. Mine recognizes it's likely trigeminal nerve pain and not TMJ. I don't know what country you live in, but I was able to go to a pain management clinic and request procedures for trigeminal nerve pain and they were willing to try just about anything I wanted. I just haven't done anything quite yet.

 

Finding a good ENT is a luck of a draw. Your are probably more likely to find a smart one in the US since despite all the US's shortcomings it seems to have a slight advantage in recognizing new health problems. Most people that are starting to get diagnosed with "hidden hearing loss and pain hyperacusis are in the US. However for every smart ENT there are a dozen dumb ones that will not hesistate to misdiagnosis.

 

I contacted Myriam Westcott in Australia. While I do live in the US, the clinic I went to was willing to try the treatments she suggested even though she isn't an American clinician. Your results may vary on whether or not a pain clinic or your own personal doctor would be willing to do the same, but I'd encourage anyone dealing with these issues to at least try the find a doctor who is willing to give some treatment options a shot.

We're unfortunately our own best advocate when it comes to personal health a lot of times. I've dealt with two other health issues in my life that were only (somewhat) addressed because I went out of my way to find out what I needed to do after multiple doctors failed me.

 

Even if you find a ENT that figures out the problem is cochlea neuropathy along with a new subtype of trigeminal nerve problems. The problem is still unresolved.

Until scientist figure out a way to block noiceptors or therapeutics that encourage regeneration of peripheral nerves. We will be hopeless. Pain killers work by blocking pain at the CNS level. Any drug that targets the CNS will have a ton of undesired side effects and not have it's max effectivity compared to a local delivered therapeutic.

Scientific research also seems to suggest that neuropathy is a combination of both peripheral pain and phantom pain and no one knows how much of each is in a individual case. Chronic pain/discomfort is still a medical mystery and it will be burden on the social welfare system until cures are found.

 

I'm still waiting to see more people try the stellate ganglion block. It worked quite well for one patient, and more specifically blocks nerves relating to the ear and not the entire CNS. There is a paper being worked on right now involving that patient.

I will probably give it a shot myself within the next year if my symptoms don't resolve themselves. I'm surprised more people aren't willing to, though it is expensive if insurance doesn't cover it and is somewhat invasive, so I understand the hesitation.

 

Hey Jack,

I almost pulled the trigger to shell out for WNGs earlier this year. My girlfriend was shocked at the cost (circa 3500 euro) and convinced me not to go down the road, at least for now. While things haven't improved for me since then, I think I am starting to manage the situation a little bit better, also I had an accident in the meantime where I was briefly concussed this has resulted in my having much more eye floater activity in my vision, which while very annoying, also has the effect of distracting me from my hyperacusis to an extent!

Just wondering though, which WNGs did you go for and how long did it take before you began to see improvements?

 

Hey mate,

That is costly! There must be some cheaper ones available or did that include fitting / calibration etc?

Yep - I hear you regarding the floaters, mine have been a pain this year!

I was seeing improvements after around 2 weeks with the WNGs. I generally wear them every other day for around 8 hours, just to give my ears a rest in between.

It's been a couple of months with them now and they've helped considerably. Yes there are some sounds that still bother me but not nearly as much as before the WNGs.

Hope you get some relief soon bud!

 

I avoid many things/situations.

I am an intern at an office right now, and sometimes it is noisy there because it is an office in an activity center for the elderly, so there is music and other loudish events there, and I avoid it at all costs (these arrangements are in some rooms far away from my office space, where I can only hear it at low volume......some of the employees goes to the rooms with music etc......I don't). During lunch time I sometimes have to finish my food very fast and leave if there are too many people having lunch at the same time (it varies how many we are)

My internship will stop at some point soon, and from there on, I have to find a job in an office that is not to big. Phone calls I can't handle, so if a job requires that, I can't take it.

I don't go to family gatherings any more, or other arrangements where there are more then very few people.....

........yeah, it definitely limits my life considerably.

 

If a good option like this that may or may not help then very few doctors would hear about it. Like you said Insurance won't cover it. It's the same distressing problems and no guarantee.

 

You just described life.

 

Hey there. 19 years old. I got mine from using a concrete saw for 6 hours or more at a time. My T showed up viscously a few weeks later. My H is the only thing keeping me from masking the blaring T. Whenever a noise gets loud enough to mask it my ears start hurting and the sound goes to my brain it feels like.I feel the noise. Had to quit my job, and my social life is taking a hit. I pretty much think this is the worst thing that can happen to a human other than perhaps total deafness or blindness.

 

Did you see a doctor?

What are the ENT's suggesting?