Suicidal

Hello, I have had tinnitus, hyperacusis / noxacusis and cracking ears for 1 year. In 1 year, my life has changed, I hardly go out and often afterwards my ears hurt. We are told that there are drugs coming out. If we look closely, we have been waiting all the time for solutions with hope and nothing works.

If it's to live a year in hell like this, why go back to the same second year? Isn't the solution in death? It's crazy because I don't want to die but I am exhausted and tired of this suffering.

 

Thank you @Lurius.

I just hope that someday it will get better for all of us and we'll find some peace. Really hard to see the silver lining right now, but I'm trying to keep holding on. Not for myself, I don't value myself enough for it, but I don't want to cause my family greater pain that I already am.

 

Really close to this. I developed a very low-pitched intermitent tone that is on for 2-3 seconds, like an engine that gets on, and then gets off for 1-2 seconds... and then on again, and off again... incredibly distresing and impossible to habituate to. I'll wait to see if it goes, but it is not possible to live with this.

 

1 in 10 women and 5 in 20 men who suffer from tinnitus die from suicide annually. That's an insane amount of deaths. I don't know why the medical community isn't treating this as seriously as some of the other somatic diseases. "Learning to live with it" doesn't mean shit if you don't want to live anymore.

 

Where did you get those statistics? 1 in 4 men?

 

Probably one of the worst, if not the worst I can say now... and ear pain isn't from high blood pressure, 100% not, bullshit.

 

I experienced very bad dry mouth on Amitriptyline/Nortriptyline. Usually after about 3 days. It was almost as bad or worse than my noise so I quit. I think it was 25mg x 3/day Nortriptyline.

 

Do you have a source for this? Because I don't think it's right...

1 in 8 people have Tinnitus, so if 1 in 10 women and 1 in 4 men of that 1 in 8 suicide, that would mean we would be losing huge swathes of the population. Someone who can do maths will be able to work out the number exactly

 

Yes, I believe that's the most common side effect for Amitriptyline (not sure about Nortriptyline but they're from the same family so it makes sense). My dose was for nerve pain so it was very low -- maybe this is why I didn't experience it. Sorry to hear it was so awful. I've quit other ADs because of side effects too.

I usually look at the user reviews on the 'drugs' website to give me a rough idea of what side effects are most common for each drug.

 

Yeah, I definitely misinterpreted the statistics, but I stand by the sentiment. I'm a words guy, not a math magician.

 

LInk: https://sfaudiology.com/tinnitus-li...kholm Public,tinnitus tried to commit suicide.

Either way, those are some impressive and sad numbers.
​

 

Why did you blur out the text. I still read through it though, lol.


"All of this is a totally fair reaction, and mostly
fair questions. Other people have commented
on the specialized equipment and the lack of
reimbursement for doing high frequency
audiometry. T‘he reimbursement is what makes
it especially difficult. Most audiologists derive
most of their financial value from selling
hearing aids. Most diagnostics are not well
reimbursed. It may seem like kind of a shitty
reason not something that could be
clinically interesting (although as you've heard,
not useful for treatment), but audiologists don't
make good money for someone with a
doctorate degree that has a $70-120k price
tag. A clinic's finances can be really, really tight.
Offering testing that won't be decently
compensated for and that can't help the patient
in a tangible way is not justifiable for most
audiologists.

 

Surely it's in a patient's best interests to be aware of any damage they might have at higher frequencies, especially if it's unusual for your age, so that from you can take better care of your hearing in future and hopefully avoid any premature worsening? Even just for better awareness of hearing health. Not surprised at this reasoning sadly... wonder how they'll cope if FX-322 comes out and puts a dent in their business.

 

I am already skeptical that Online Hearing test aren't accurate. We all know Audiology predates the internet and they would like us to believe that.

 

I wasn’t blurring it out to hide it... the lines are meant to box in a certain portion of the wall of text beginning with “the reimbursment”. I wasn’t able to draw thin enough lines under the section I wanted to highlight. The section I actually wanted to blur out I successfully blurred out.

However if my intention had been to hide it I don’t know why you’d think it was a good idea to post a legible version of it... but you do you.

 

Yup. Another Audiologist commented “if I had to sit there and test all frequencies we would be stuck there all day”

The wording, especially the “stuck all day” part really shows that they don’t care about patients. Of course they have to make $$ but that really rubbed me the wrong way.

You don’t hear surgeons saying “man if I had to take out the tumor in full I’d be in the operating room all day”.

Different things of course but idk. The audiology subreddit is pretty sad to read from the perspective of a patient.

 

Wow, that's really disheartening to hear. I suppose not all audiologists are like this but ugh that's so shitty - the lack of compassion really stands out. Feels like they don't actually care about the bigger picture of hearing health, just about whether they can shill hearing aids. Audiology etc really needs to move away from this hearing-aid centred paradigm where if you score 'perfect' on the standard audiogram then you're good to go - hyperacusis and tinnitus need to be recognised as early 'warning signs' of damage.

It speaks volumes when the researchers who work in labs on this stuff, e.g. Charles Liberman and Paul Fuchs show far more compassion and understanding towards patients then actual clinicians. The r/medicine subreddit is also really awful and very dismissive of conditions like CFS, fibromyalgia, IBS etc.

 

Holy crap is that infuriating.

 

It hasn't even been all that long but I cannot see a positive end to this. Knowing that there's no cure, knowing that the only treatments out there are pseudoscience at best. Seeing people who have suffered for as long as I've been alive, even those who have been suffering a year.

I finally felt happy in life, like I was doing something right for once. I wouldn't wish this on my worst enemy. I'd take any terminal disease over hyperacusis. And I know that sounds extreme. But at least then I can live my life to the fullest before death.

 

The lovely people we have helping us at least some of them are honest. Lots of “it’s not clinically relevant” “we can’t do anything about it” “millions have tinnitus” sort of replies.

For context, my question was simply asking why they don’t test for frequencies higher than 8 kHz. My post and all subsequent questions all got downvoted to hell (which was expected in an audiology sub which I was ready for) but pretty much every other comment was extremely rude and condescending.

Someone mentioned that they do a tonal match for tinnitus and when I asked what they would do in the case that someone has multiple tones or hissing tones, and they said “refer them for a psych evaluation to be quite honest”.

 

A portion of point number 4 stands out the most to me: “There is not a hearing intervention currently that can restore audibility to very high frequencies (despite what manufacturers tell you).”

When there is a high-frequency hearing intervention available (FX-322, OTO-413, etc.), testing high frequencies will become clinically meaningful. All frequencies will be viewed as relevant.

There is so much industry disruption about to occur. I can’t wait for the game to change.

 

Oh dang that’s not good. Mostly because I’ve read chronic dry mouth can damage your teeth and likely why long term users of these drugs sometimes find their teeth crumbling away.

 

There is nothing extreme about wanting to live a normal life again, even just for a short time
I would have taken the same deal, if such trade was possible to arrange.

It is better to live knowing you will be dead soon, than to indefinitely exist suspended in time and space, without being able to live.

 

Fuchs and Liberman are at the bleeding edge of scientific discover on how the cochlea works. AuD's are 20 years out of date stuck in the Jastreboff days.

 

This is where I'm at too. Would rather have a finite time living than an indeterminate time merely existing.

I'm stuck in limbo. Can't live because of hyperacusis but can't die as it would destroy my kids, fiance and family.

Shaun

 

@Harley

Agree. So well said!

 

There is no good excuse for audiologists to ignore EHF testing. This article from 2017, 'Benefits of Extended High-Frequency Audiometry for Everyone' makes that abundantly clear. https://journals.lww.com/thehearing...Extended_High_Frequency_Audiometry_for.8.aspx

This myth-busting section makes some very good points:

“Our audiometers/earphones only work up to 8 kHz.”
Time to update your equipment. Modern audiometers allow testing up to at least 12.5 kHz. When updating tools, insist on getting an audiometer with a capability of up to 16 kHz (20 kHz for pediatrics). Norms for EHF hearing are available for professional headphones."

“There is no evidence that EHF is useful.”
There is substantial evidence, old and new, that when EHF hearing is lost, so is optimal hearing. In fact, EHF may be the single most important source and the most easily measured index of hidden hearing loss (including cochlear synaptopathy, which are hearing difficulties that occur despite having normal audiograms."

“This will extend our testing time.”
Not necessarily. Here are two ways we could make up time for EHF testing. First, eliminate bone conduction at 4 kHz. The data are of limited value and false air-bone gaps occur. Second, eliminate speech reception thresholds. They provide little information in a reliable patient. If the schedule is tight, you could simply add one EHF (e.g., 12 kHz) to the normal test frequencies."

How do audiologists get away with peddling the opposite of this? Are they not required to do some sort of CPD?

Other great points made in this article:

"EHF testing can open doors to further diagnostic understanding. Be bold and think not about the challenges, but about the opportunity."

• "Early warning. Knowing that you have EHF loss would be a great wake-up call, for active monitoring, prevention (e.g., ear protection), and intervention (below)."
• "Understanding unexplained difficulty. Middle-aged people frequently have listening difficulties that are unexplained by current audiological practice. A finding of EHF loss would provide at least a partial explanation."

 

Their regulatory bodies are lazy, and lack any actual want to innovate? They're also not medical doctor's, so they lack that level of scrutiny as well.

The fact they don't do ehf testing is dumb because for years they've said that you lose hearing progressively no matter what, but haven't done any real work into why that is. Personally, I'd be interested in seeing the audiograms of Amish women, as they probably live a life closest to what our ancestors did at least noise wise.

 

It's so annoying because it seems, particularly in relation to tinnitus and hyperacusis, that if you score normal on a standard audiogram then hearing damage is automatically ruled out by them. If they actually investigated for EHF damage then that could provide more insight into where the damage lies!

Also I remember reading an article (I think Liberman was quoted in it) where it was found that people who lived in rural tribal societies away from civilisation people's hearing was far better for their age than the average.

 

Hi Jeremy I know exactly what you are feeling. I got my tinnitus 2 years ago, it was lessening over time and then 2 days ago at a friend's place with a nail gun, my tinnitus is back to where it was, loud and consistent (I am floating around a 7/10 in the right and a 5/10 in the left). I am hoping it is just a spike and it will go back to where it was before I went to his house. However, in the interim I am wondering why, and how can I go on. There seem to be no fairness to this and I, and a lot of other tinnitus sufferers understand how you feel.

BUT I also know that there is more, however hard it is to see. So I keep looking forward with hope (where it comes from I don't know, but it does seem to trickle in). You can do it, just keep looking past it with your mind. That is what I am back to doing, it may not be easy but it is doable. There is life with tinnitus, you can find it, and you are not alone.