Trying to Explain Tinnitus to Disability Employment

Hi, I would just like to share my experience as well as ask for some advice in regards to my experience.

Today I went to an appointment with a job agency who help people with disabilities get work, I have been a few times in the past but today I ran into a major problem. This problem arose from me getting a job through this agency in the past that I had to quit as it permanently exacerbated my condition. The job was too loud as it involved changing car batteries which always ended in me having to drop the car bonnet to close it after I was finished, which even with plugs in still worsened my tinnitus. So I quit the job and came to my appointment today, my "case officer" I guess was understandably mad, which I am very understanding of as by quitting that job so soon I have effectively ruined the relationship between the Job agency and that employer.

But I explained to her that for some reason my tinnitus just keeps worsening with even moderate noise exposure so I can't work in noisy roles and yet she kept recommending me jobs as like a factory worker and a trolley boy which I can't think of being worse as they are both very loud jobs. Eventually, it came to a boiling point where she basically said "you can't spend your whole life indoors" and I nearly exploded at her as I obviously don't want to spend my life indoors as I am an incredibly extroverted person, but a lot of the time when I do, I run the risk of worsening my already horrendous tinnitus. I'm stuck between a rock and a hard place I want to have meaning to my life so badly but it comes with a huge cost to my mental health everytime I do try and "be normal" but also being a hermit makes me so incredibly depressed. I tried my hardest to explain this to her and she just didn't get it or understand how severe tinnitus can be. I felt really helpless(which is something I haven't felt in ages) as I am trying everything fucking thing I can to get better and she is basically saying tinnitus is something I need to get over.

So I guess my question is like how do I explain to someone how bad tinnitus can be? Are there any good articles or resources which could help a non-tinnitus sufferer understand our struggle?

Because articles from the ATA and BTA make tinnitus look like a cakewalk.

 

I don't think trying to explain what you have is a good approach to this. I just informed my boss during the first meeting that i have ear damage and i can't take loud noises and that i can't participate in whatever events or situations involving loud noises due to my condition, which is a medical one and to which i can provide papers as a proof. It was accepted and that was it.

It's important to address your condition on the first day of getting the job so it wouldn't sound as a sort of cheap excuse once the threatening to you situation arises.

Dwelling into to details is useless as they are very unlikely to understand anyway and likely don't care regardless.

What's important is to make a point that you have a medical condition and you have lifestyle restrictions which are simply non-negotiable. An analogy with diabetes i found helpful. Just as a person with diabetes can't take sugar, i can't take loud sounds. There is nothing i can do about whether i want it or not.

 

Okay sounds good I will just be blunt and be like "this is what I can and can't do" and this is non-negotiable and just leave it at that, cause you are right they don't care but she still kept telling me to explain myself, which I don't normally do cause it just wastes time and I feel like a narcissist.

Thanks for the help .

 

I spoke with a woman at the ATA and she told me she knew nothing about fx-322, and then claimed that they keep up with all current tinnitus research and I was like "how can you say that if I had to just make you aware of this?" and she was obviously offended over that. Seriously, fx-322 has been in trials now for like 2 years and these people aren't even keeping up with the things that may actually alleviate or cure many if not most of tinnitus cases. THEY AREN'T DOING THEIR JOBS. I HAVE A FULL TIME JOB AND I STAY MORE INFORMED THAN THE ENTIRE ATA!!!! SEVERAL OF US ARE MORE INFORMED THAN THE ATA!!!!! THEY ARE USELESS!!!!

 

@Liam_Cairns
Those car hoods make quite a thud when you close them. I did it over the weekend, without my plugs in for the first time in months and only from an inch or two up and noticed how loud it was. I doubt I could do that job all day either!

Explaining tinnitus is like explaining purple to a blind person- they wont get it no matter how much you try. Here in the US, reportedly a lot of our veterans have tinnitus, but have difficulty getting disability as nobody believes them, and there is no objective test to confirm it if their hearing loss is minimal or not apparent on the standard audiogram. Frustrating situation all around.

Hope you can find a job more compatible with your tinnitus. Dont they have anything not in a factory?

 

I'm not sure it matters after your whole discussion with your "case officer", but you don't have to drop the car bonnet to close it. You can simply lower it until you reach the latch, and press it down until it clicks. That should not be loud.

Slamming it down is actually not good for the bonnet/trunk latch: it stresses it unnecessarily.

Good luck.

 

So true. I did mine from only an inch up, and was still loud. I will use your method next time.

 

Can you share a link or some resource that discusses FX-322 as a cure for tinnitus?

 

There are cochlear implant studies that show restoring lost input alleviates tinnitus.

fx-322 restores lost input.

One of the inventors of fx-322 believes restoring hearing will also alleviate tinnitus.

It's called logic.

 

Why don't you just get hearing aids then? ::silence:: Oh wait... bad joke

Those cochlear implant studies are cool...but this drug isn't going to change hearing thresholds anywhere near the level of a CI. Those individuals are going from profoundly deaf to hearing. As much as we all like to talk about our hearing loss... I think only a select few have hearing loss that requires a CI. For all we know, those people are just experience constant masking, because their amplification got turned up 50,60,70dbs or more.

And no your HF hearing loss doesn't count.

 

hearing aids can't wiggle haircells that aren't there.

you have absolutely no idea if that's true.

wtf does that even mean?

 

In your model, logic would state that the severity of tinnitus would be tied to the severity of hearing loss. Thus, the more DB you can improve your hearing loss, the greater the reduction in T. Ok that's fine. We are talking about people with DB losses of 100db or greater across multiple frequencies. The order of magnitude is so much greater than improving from 25db loss for example.

The reason your HF doesn't count is because the size of your brain map is tied to the amount of expected noise your brain plans to hear and use at a specific frequency. Since the majority of our auditory brain maps are centered around speech, we expect to hear and use our hearing mostly in our speech range. As I go through out my day, my brain couldn't care less if there is a 19000khz signal around me. It really couldn't care less.

So here is where logic kicks in. If you don't have a reason or necessity to hear at a certain frequency...missing it or not hearing it won't create tinnitus. How is this not immediately apparent?

 

https://www.healthyhearing.com/report/52313-Tinnitus-and-suicide-why-it-s-happening-how-to-stop-it

https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2273.1994.tb01147.x

https://journals.lww.com/thehearing...l_Ideation_Among_Patients_with_Chronic.6.aspx

 

Hey Greg, I actually thought this was the case as well, but I soon learned with some cars it just doesn't work like that, and additionally my boss would get mad when I wouldn't drop the bonnet so I just kinda gave up.

 

Urrmuhgawd, an employment case worker, their job is to not understand your problems and instead ensure your placement secures their commission. A system rigged against the little guy!

 

The person at the employment agency didn't, and doesn't, care about you. They want to place you at a job and get their check. Don't be fooled. If you took one of the noisy jobs and ended up with worse t they wouldn't care.

A quiet job for an extroverted person. Hmmmm....

Librarian, anything in sales that sells something without a motor, a call center would be great but I couldn't imaging using a headset all day with t, receptionist at a medical office. Think outside the box. Go to your strengths.

 

hearing aids do improve tinnitus by giving the existing hair cells more input but they don't bring lost ribbon synapses and hair cells back.



The co-founder Frequency Therapeutics working on FX-322 said this.

 

the severity of tinnitus isn't tied to hearing loss, just like how different veterans who are amputees have different experiences of phantom limb sensations and pain and some don't have it at all.


It's really confusing to understand how tinnitus actually works
but think of it as hearing loss + other factors and GABA being the gateway mechanism

 

I know severity is not related... that’s my point with the logic. If A (hearing loss alone causes t) then B (degree of loss would equate to t severity). Since B does not equal A, A cannot equal B.

That’s one way to look at it. But you need to consider the hypersynchrony that occurs in many cases. What fires together, wires together (this is what signal timing reduces) This is a very separate mechanism from how GABA interacts with the brain. I’ve compared T to phantom limb pain before... so that all makes sense.

Hypersynchrony also helps explain why sound can cause spikes even if the dB is low. The brain has turned up the input and the increased hypersynchrony causes too much input for our brain.

 

I know they do, that’s my point. Hearing aids improve but do not cure tinnitus. Thus the etymology must be more than simply loss.

 

I believe hearing loss is the key player because it seems tinnitus is a phantom sensation of lost hearing. The most effective treatment should be regenerating ribbon synapses and hair cells, far better then hearing aids.

 

Noise trauma followed by damage to the auditory organ resulting in hearing loss causes tinnitus. That's why many if not most of our tinnitus was caused noise exposure. That's why in movies and video games when a bomb goes off, they play the tinnitus sound. My tinnitus started immediately after a very loud sound exposure.

 

Not all of them, but movies like The Pianist and Standoff did. And Half-Life 2.

 

Are you on Centrelink?