Working with Hyperacusis: What Do You Do for Work?

[Orions Pain]

Is your hyperacusis bad enough to the point where you can't work? Those of you who are unable to work, how do you survive? Due to the invisible nature of this condition I'm sure it's close to impossible to get benefits. But what other options do we have besides family taking us in? What about those without family?

My condition is steadily getting worse and I worry once COVID-19 is over I won't be able to tolerate my office at all and it's not exactly an environment where my employers are accommodating. My parent's still don't believe me much so even if I move home it will be endless arguing about finding a job.

I'm at a loss here. My ears have been burning like hot Lava daily and I can hardly tolerate a 1 on one conversation and no doctors seem to be willing to help me.

 

[Juan]

Is your hyperacusis bad enough to the point where you can't work? Those of you who are unable to work, how do you survive? Due to the invisible nature of this condition I'm sure it's close to impossible to get benefits. But what other options do we have besides family taking us in? What about those without family?

My condition is steadily getting worse and I worry once COVID-19 is over I won't be able to tolerate my office at all and it's not exactly an environment where my employers are accommodating. My parent's still don't believe me much so even if I move home it will be endless arguing about finding a job.

I'm at a loss here. My ears have been burning like hot Lava daily and I can hardly tolerate a 1 on one conversation and no doctors seem to be willing to help me.

Actually an office job should be the best option. I cannot think of anything quieter, except a library or something like that. Or some churches...

 

[RishRamsey]

I have asked this question numerous times and the most common responses, in order of frequency are:

1) Benefits - I don't think it's too hard to get them in US or Europe as literally more than 50% people on Facebook hyperacusis groups have benefits. I live in a 3rd world country where there is no concept of disability benefits hence this option is not for me, but for people in US and EU, this is a very valid option.

2) Family - Again the next most common thing.

3) Own business / WFH job.

4) Hyperacusis not bad enough to not work.

I have never really got what I could do as a legit business or WFH job from home. No one has any clue, they'll just put theoretical things like programming, marketing, accounting, blah blah blah with absolutely no practicality to get jobs.

I think it would mostly depend on what your skills are, and if your industry support working from home, if not, family is the only option I have, personally (which is not much in my case TBH).

 

[Orions Pain]

1.) Benefits are EXTREMELY difficult to receive in the United States. There are very few people in the Facebook groups receiving benefits strictly for hyperacusis, the few that do have benefits have it for other underlying issues and are older, 50+.

2.) In my case I don't have a lot of family. I only have my mom and my dad, and while they can help me for now, they are getting older too, which worries me a great deal. I don't have siblings

3.) Owning your own business is also extremely difficult especially if you're starting out with a disability. WHF positions are extremely hard to come by. At least in the US typically upper level positions get to have that option (even though I'd say 90% of office work can be done from home)

I've seen the threads on Facebook but like you said unfortunately no one has many legitimate suggestions. It seems like most of us who are younger are either relying on parents or on our savings. Maybe after covid more companies will realize how much work can be done remote. There are quieter fields like accounting, marketing, programming, but like you said, all of these require skill and at least in the US that's at least 4 extra years of very expensive schooling

So essentially we are screwed

 

[Juan]

in the US that's at least 4 extra years of very expensive schooling

The US price of "education" is just ridiculous.

 

[FGG]

If your hearing is otherwise good, from what I have heard, medical transcription is a decent paying stay at home job.

 

[RishRamsey]

Actually an office job should be the best option. I cannot think of anything quieter, except a library or something like that. Or some churches...

Travel part is pretty tricky here. Arrrghhhhh. Screwed for life unless one recovers from severe hyperacusis

 

[RishRamsey]

2.) In my case I don't have a lot of family. I only have my mom and my dad, and while they can help me for now, they are getting older too, which worries me a great deal. I don't have siblings

Oh by family I meant Mom and Dad only. I really don't consider my aunts and uncles and cousins my family. They are not going to support me for life lol. But yeah, we're screwed unless we somehow recover or if a cure comes.

 

[Juan]

Travel part is pretty tricky here. Arrrghhhhh. Screwed for life unless one recovers from severe hyperacusis

Over time hyperacusis should evolve. It does not mean heal, but change. Maybe it's a better situation, who knows.

 

[Contrast]

You need to look at our suffering and denial of disability income from a conservative economic perspective.

Trump's economic policies are extremely successful at thwarting us from leeching on disability. The tax payer has been successfully shielded from would be damage from people who cry about their ears. Whiny leftist with broken ears are not getting their selfish demands for other peoples money. Many Americans are going to vote for Trump's reelection to continue this success wave. The spineless leftist will be forced to put on his work boots or starve.

 

[Orions Pain]

@Orions Pain

This type of hyperacusis can improve by itself over time and for some people it can be completely cured. I know this for I once had very severe hyperacusis that was treated with the wearing of white noise generators for two years, as part of TRT and has been completely cured for over 20 years. I have corresponded with people at other forums, by email and telephone, whose hyperacusis has improved or cured with or without the specialist treatment that I have mentioned.

I have highlighted your comment: No doctors seems to be willing to help me, to make you aware treating tinnitus and hyperacusis caused by noise trauma, isn't normally the area of expertise for most ENT doctors. ENT doctors are physicians who treat underlying medical conditions that cause tinnitus within the auditory system. They do this medically or surgically. When the tinnitus is noise induced with or without hyperacusis, the correct health professional for you to see is either a Hearing Therapist or Audiologist, that specialises in tinnitus and hyperacusis treatment and management.

Some people find within the first 6 to 12 months of tinnitus onset, their noise induced tinnitus improves and if hyperacusis is present improves too which eventually leads to habituation. However, tinnitus and hyperacusis can be complex. Although some people habituate to tinnitus they might find hyperacusis still problematic. This often manifests itself by causing tinnitus spikes, whenever they are exposed to certain sounds that don't necessarily have to be loud. The longer this continues the more difficult the condition can become to manage. In some instances other problems may result that I wrote about in my post: The complexities of Tinnitus and Hyperacusis. One has to appreciate that tinnitus and hyperacusis can affect a person's mental and emotional well-being profoundly. It is here that the real battle of learning to manage and cope with these conditions are fought.

This is the reason I impress upon people the importance of bringing positivity into their life and not to associate with negative thinking people at tinnitus forums and other social media platforms. I am not talking about people that express their difficulty coping with tinnitus. I am referring to those that believe all forms of tinnitus treatments aren't helpful and thwart any signs of positivity whenever it is present. This is also the reason I advise people once they start a tinnitus treatment not to discuss it at tinnitus forums.

Hyperacusis can be treated with self help and for some people good results are possible. I have covered this in my post: Hyperacusis, As I see it. When the condition is more problematic the wearing of white noise generators is advised under the guidance of the health professionals I've mentioned above. This is a specialised treatment that can last up to 2 years. A member of this forum told me a short while ago that he was about to start treatment for hyperacusis. His Audiologist told him, that all her patients were cured of hyperacusis. The only ones that did not improve were those that didn't stay with a her treatment plan. He told me the Audiologist who specialises in hyperacusis, said the brain has only one hearing centre and therefore, only one white noise generator needed to be worn not two. Treatment usually takes 18 months and regular counselling is provided.

Michael

PS: As in all forms of treatment for tinnitus and hyperacusis there is no guarantee that they will be successful, and therefore results will vary between people.

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
https://www.tinnitustalk.com/threads/the-complexities-of-tinnitus-and-hyperacusis.25733/
https://www.tinnitustalk.com/thread...why-has-tinnitus-hyperacusis-increased.19091/

With all due respect my question was about work, not the place for a copy and paste response regarding TRT.

My main issue isn't even tinnitus anymore. It's the fact that my ears burn with a hot lava pain even at night when there is no sound present. Something tells me playing pink noise in my ear won't help.

 

[Orions Pain]

You need to look at our suffering and denial of disability income from a conservative economic perspective.

Trump's economic policies are extremely successful at thwarting us from leeching on disability. The tax payer has been successfully shielded from would be damage from people who cry about their ears. Whiny leftist with broken ears are not getting their selfish demands for other peoples money. Many Americans are going to vote for Trump's reelection to continue this success wave. The spineless leftist will be forced to put on his work boots or starve.

This also isn't helplful with my actual question.

 

[Orions Pain]

Oh by family I meant Mom and Dad only. I really don't consider my aunts and uncles and cousins my family. They are not going to support me for life lol. But yeah, we're screwed unless we somehow recover or if a cure comes.

I didn't mean other family supporting you for life but more so helping you out a bit such as a place to crash and whatnot especially when your parents are gone.

Lots of people are closer to their siblings than to their parents (most of my friends are).

 

[FGG]

You need to look at our suffering and denial of disability income from a conservative economic perspective.

Trump's economic policies are extremely successful at thwarting us from leeching on disability. The tax payer has been successfully shielded from would be damage from people who cry about their ears. Whiny leftist with broken ears are not getting their selfish demands for other peoples money. Many Americans are going to vote for Trump's reelection to continue this success wave. The spineless leftist will be forced to put on his work boots or starve.

The idea now is that you can't get SS Disability if you can do any job, not just your former job. That didn't use to be the requirement. And they are pretty strict at determining who truly can't do any job. People actually cheered for this change.

To complicate things, health insurance is tied to full time employment and there are only a finite amount of jobs for disabled people (most of which will not pay the bills for single people living alone).

The only way in these cases to get healthcare is to apply for Medicaid and Medicaid is extremely hard to get in some states without kids (if you have kids, the government will usually offer to help you for the sake of the kids).

There is just a certain percentage of people that would rather disabled people suffer greatly than "welfare queens" getting any their hard-earned money. They are the same kind of people who support the death penalty even knowing innocent people die in the process. They see this as the lessor of two evils. And without empathy, they won't understand unless it happens to them.

 

[Michael Leigh]

With all due respect my question was about work, not the place for a copy and paste response regarding TRT.

Yes I know your enquiry was about work but thought you might want to try and seek help for your condition, seems I was mistaken. My post wasn't cut and paste by the way, although it may contain similar wording to previous posts I have written about TRT.

Michael

 

[Contrast]

The idea now is that you can't get SS Disability if you can do any job, not just your former job. That didn't use to be the requirement. And they are pretty strict at determining who truly can't do any job. People actually cheered for this change.

To complicate things, health insurance is tied to full time employment and there are only a finite amount of jobs for disabled people (most of which will not pay the bills for single people living alone).

The only way in these cases to get healthcare is to apply for Medicaid and Medicaid is extremely hard to get in some states without kids (if you have kids, the government will usually offer to help you for the sake of the kids).

There is just a certain percentage of people that would rather disabled people suffer greatly than "welfare queens" getting any their hard-earned money. They are the same kind of people who support the death penalty even knowing innocent people die in the process. They see this as the lessor of two evils. And without empathy, they won't understand unless it happens to them.

I agree, it is a fact that Trump made it extremely difficult to get disability. It was already difficult.

 

[xyz]

Actually an office job should be the best option. I cannot think of anything quieter, except a library or something like that. Or some churches...

I have an office job and am struggling with it. You just can't protect for every slamming door, window, meetings in small rooms with people speaking loudly, noisy canteens or telephone calls when others are speaking in the same room. Also commuting can be loud. So I am quite grateful for this lockdown currently and probably will go on 100% work from home after it or else I will quit.

 

[Orions Pain]

The idea now is that you can't get SS Disability if you can do any job, not just your former job. That didn't use to be the requirement. And they are pretty strict at determining who truly can't do any job. People actually cheered for this change.

To complicate things, health insurance is tied to full time employment and there are only a finite amount of jobs for disabled people (most of which will not pay the bills for single people living alone).

The only way in these cases to get healthcare is to apply for Medicaid and Medicaid is extremely hard to get in some states without kids (if you have kids, the government will usually offer to help you for the sake of the kids).

There is just a certain percentage of people that would rather disabled people suffer greatly than "welfare queens" getting any their hard-earned money. They are the same kind of people who support the death penalty even knowing innocent people die in the process. They see this as the lessor of two evils. And without empathy, they won't understand unless it happens to them.

This is so sad and I'd bet most disabled people actually would love to work and to feel normal. To make a livable wage, socialize, and feel like they're contributing to something. As much as work can suck, staying home all day is definitely no walk in the park and idk why society treats it as such.

Life is already hard enough as it is but for some reason society makes it even harder for those who are disabled.

 

[Contrast]

Most people only apply for disability once and get denied and give up. You are suppose to get a disability lawyer and fight. In the age of Trump it's a requirement. Even before Trump disabled communities knew about this.

Even in Europe you still need a disability lawyer.

 

[Orions Pain]

Most people only apply for disability once and get denied and give up. You are suppose to get a disability lawyer and fight. In the age of Trump it's a requirement. Even before Trump disabled communities knew about this.

Even in Europe you still need a disability lawyer.

Wouldn't you have to get a proper diagnosis for whatever's going on with your ears prior to even getting a disability lawyer? Like does anyone here actually have a diagnosis for hyperacusis?

 

[Orions Pain]

I have an office job and am struggling with it. You just can't protect for every slamming door, window, meetings in small rooms with people speaking loudly, noisy canteens or telephone calls when others are speaking in the same room. Also commuting can be loud. So I am quite grateful for this lockdown currently and probably will go on 100% work from home after it or else I will quit.

I'm in the same exact position. Office job in a huge space that's not really meant to be an office. Concrete floors, terrible insulation, open floor plan. My manager also doesn't know the concept of an inside voice. 99% sure I'll be quitting once COVID-19 is over, just haven't put in my two weeks yet.

 

[Contrast]

Wouldn't you have to get a proper diagnosis for whatever's going on with your ears prior to even getting a disability lawyer? Like does anyone here actually have a diagnosis for hyperacusis?

I got the words "Noise Injury and Hearing complaints (unspecified)

 

[lymebite]

Like does anyone here actually have a diagnosis for hyperacusis?

In the United States at least, there is a diagnosis code for hyperacusis.

It is ICD-10: H93.233.

https://www.icd10data.com/ICD10CM/Codes/H60-H95/H90-H94/H93-/H93.233

 

[Juan]

I have an office job and am struggling with it. You just can't protect for every slamming door, window, meetings in small rooms with people speaking loudly, noisy canteens or telephone calls when others are speaking in the same room. Also commuting can be loud. So I am quite grateful for this lockdown currently and probably will go on 100% work from home after it or else I will quit.

I am sure it is not easy, but most other jobs would be even worse.

 

[Contrast]

In the United States at least, there is a diagnosis code for hyperacusis.

It is ICD-10: H93.233.

https://www.icd10data.com/ICD10CM/Codes/H60-H95/H90-H94/H93-/H93.233

It wasn't added until 2016.


WHY WASN'T THIS DOCUMENTED EARLIER CONSIDERING ALL THE VETS WHO HAVE IT?

 

[lymebite]

It wasn't added until 2016.

In the United States, a diagnosis code did in fact exist for hyperacusis prior to 2016. But the code was revised in 2016, I think to increase the number of diagnosis code options in order to distinguish between left ear only hyperacusis, right ear only hyperacusis, and bi-lateral (both ears) hyperacusis. But I am not an expert on diagnosis codes.

Prior to 2016, the diagnosis code in the United States for hyperacusis was ICD-9-CM: 388.42.

Details on the hyperacusis diagnosis code prior to 2016 may be found here:

http://www.icd9data.com/2015/Volume1/320-389/380-389/388/388.42.htm

 

[xyz]

I'm in the same exact position. Office job in a huge space that's not really meant to be an office. Concrete floors, terrible insulation, open floor plan. My manager also doesn't know the concept of an inside voice. 99% sure I'll be quitting once COVID-19 is over, just haven't put in my two weeks yet.

I can understand that your parents don't believe you much. A year ago I also would have thought that it's impossible to experience physical pain from every day noises. I have had (mild/moderate) tinnitus for years and never bothered to go on any support sites. Now with added hyperacusis I am daily on Tinnitus Talk.
If it does not heal on its own there is the redesigned Trobalt from Prof. Thanos or the hearing regeneration drugs which might also help with hyperacusis. So I am optimistic that at least in a couple of years we get a good part of our quality of life back.

 

[Orions Pain]

I can understand that your parents don't believe you much. A year ago I also would have thought that it's impossible to experience physical pain from every day noises. I have had (mild/moderate) tinnitus for years and never bothered to go on any support sites. Now with added hyperacusis I am daily on Tinnitus Talk.
If it does not heal on its own there is the redesigned Trobalt from Prof. Thanos or the hearing regeneration drugs which might also help with hyperacusis. So I am optimistic that at least in a couple of years we get a good part of our quality of life back.

Ugh yeah so far I don't have immediate pain from sound but I do have severe burning in all Trigeminal branches especially my ears. I think my H acts more in a way where instead of quick pains I get severe severe delayed reactions to sound on top of loudness hyperacusis where I can hardly tolerate voices amongst other things

This is why I hate how tinnitus is just this blanket term because tinnitus and...TINNITUS or TINNITUS + hyperacusis are just on another level of pain while most of society just sees tinnitus as that mild ringing you get after a concert or that your grandpa has.

I'm just at the point where I don't care if my parents believe me or not I just need them to believe me enough to the point where they won't mind if I quit my job at 26 and move home and avoid loud sounds.

You would think me sacrificing literally my entire social life, vacations, friends, etc would be enough to display how distressing this all is but apparently not.

 

[Gabriel5050]

@Orions Pain I feel you, man. I'm in a similar situation, except I dropped out of first year of university and I'm 20. I don't know the solution to our problems, but have an internet hug.

 

[Juan]

I'm just at the point where I don't care if my parents believe me or not I just need them to believe me enough to the point where they won't mind if I quit my job at 26 and move home and avoid loud sounds.

Maybe you can work from home.