What I Learned from My Audiologist Appointment

- Extended audiograms up to 16 kHz are pointless and my hearing is perfect. That’s only dog hearing and humans can’t hear that high.

- I have no cochlear damage because they’d be able tell through the audiogram.

- Audiologist suggested an MRI.

- Expose myself to normal everyday noises, use earplugs sparingly.

- My noise-induced tinnitus is likely not caused by high-frequency hearing loss because of the audiogram.

- Go on antidepressants, CBT.

Overall I am very disappointed in what my audiologist knew about hyperacusis. Although it about met my expectations. The AuD treated the 8 kHz audiogram as the infallible source of hearing damage and implied that it was psychosomatic.

Just sharing this so people know what to expect walking into an audiologist’s office.

 

That reads like THE quintessential list of bad advice for a hyperacusis sufferer. The only thing missing is the referral to go and do the battery of other unnecessary and dangerous tests, LDL etc.

It highlights what we're up against. I don't get how this advice is still so entrenched and accepted as gospel given how much evidence there is to show how detrimental, dangerous, and in some cases plain wrong it is.

 

I have an appointment with an audiologist on Tuesday...I'll be making sure to come equipped with my 16-page symptom diary (4 months June-October) and my correspondence with researchers (Paul Fuchs), and information from the Hyperacusis Research website. Worried they're going to force me to undergo a hearing test (apparently this is part of the appointment) although surely I have the right to refuse? I have had standard audiograms administered before and scored 'perfectly' - I don't want to be labelled as uncooperative or non-compliant but I'm sort of thinking - what purpose would it serve anyway, in the context of pain hyperacusis?

 

Buddy, don’t do any of that. Like at all. None of that is good advice.

 

If you don’t want any auditory tests, then don’t go the audiologist. It’s a waste of a copay. Audiologists don’t know anything about hyperacusis anyway. Your typical Tinnitus Talk member is more qualified to give you advice.

 

I'm in the UK - I don't know what a co-pay is - it's an appointment on the NHS so I don't pay anything. I'm more doing it in the hopes of at least having it noted it down on my records - also when I was initially referred back in March I was in a far worse place than I am now so was more open to some form of treatment even if it's CBT or something.

 

Gotcha, here in the United States unless you are on Medicaid (welfare), you have to pay for a percentage of your doctor visit. So if an appointment is $300 for example, you pay $30 while the insurance pays $270. Good for you having the NHS though, must be nice. Though the fact it took over 6 months for an appointment sucks.

But yeah, audiologists can’t prescribe or do most doctor stuff, the only thing they really do is audiological tests. If you don’t want tests, they can’t really do anything for you other than give advice. And audiologist advice is typically really shitty, the practice is literally in the fucking dark ages. I can’t wait for Frequency Therapeutics and Otonomy and the like to come out and cure this crap and put these ignorant jackasses out of a job.

 

Yeah, it's literally medieval - I'm hoping I can at least make them aware of the existence of pain hyperacusis if nothing else and that they need to take us sufferers seriously and not tell us it's all in our heads. I'll probably be booking a flight to the US ASAP if FX-322 works (seems encouraging so far...)

 

I mean, isn’t FX-322 also going to be released in the UK?

 

Yeah, it should be although I guess I'm just anxious that it won't be readily available as soon.

 

Yeah I see what you mean. The only thing is that doing it here in the United States would be massively expensive for you since you’d have to do it 100% out of pocket. So I hope England gets it quick so you can do it thru the NHS.

 

Been there, done that. Verbatim.

 

You can refuse anything, and should. Just be tactful with your overwhelming evidence - they will likely feel immediately alienated and start backpedaling. Not sure why healthcare providers feel so insecure when a patient is informed, but it is what it is...

 

Wrong.

Dangerous.

Bad advice...

Woww... your audiologist got it all wrong...

 

The only thing worse is when they acknowledge and cite Jastreboff directly.

 

The lady I saw when I first got hyperacusis did that. Thank god I didn’t listen to her.

 

Best of luck with it. Totally agree, hearing tests shouldn't automatically be necessary with tinnitus or hyperacusis being the complaint, especially if you have already had one done showing otherwise sound hearing, or if you are confident you have sound hearing, as they cant indicate or prove anything to do with these conditions, just potentially make them worse. If hearing loss is suspected as well, then perfectly understandable, but this dumb logic that ALL hearing problems need a hearing test doesn't make sense. Just seems like a de facto standard cash grab as soon as you walk into an audiologists no matter what your hearing symptoms are they need to get their money and justify it with a hearing test. I may sound cynical about this, but I saw 3 different ENTs and audiologists within approx 12 months, my only complaints being tinnitus and noxacusis. The first wanted a hearing test done which showed no significant hearing loss, but the next 2 also wanted their own hearing tests done as well even though I brought the results with me from the previous tests. All three told me my hearing was fine (in terms of hearing loss), which I'd never even raised as a complaint.

The other tests like LDL, tinnitus matching etc. I'm reluctantly starting to slightly change my view on for one (non medical) reason only. I think these tests are unnecessary, dangerous, and pointless from a health perspective. I had a tinnitus matching test done once and it indicated pure tone at 6 kHz and 8 kHz 30 dB and 40 dB in respective ears. I asked, so what can we do with that info? He said, nothing, it just indicates that you have tinnitus. I knew I had tinnitus without taking a test and thought at the time how pointless it seemed. But I do now think these tests are sadly essential hoops to jump through to get an official record of your condition, in order to obtain meds, disability, any other type of support etc. It blows my mind though that some people, myself included, have been further harmed by these tests.

EDIT - all that being said above about hearing test not being necessary for tinnitus and hyperacusis assumes standard tests. However, if extended audiograms were offered then that could be a different thing altogether.

It just continues on and on doesn't it. Scared suffering people, in some cases paying huge sums for the same old bad and dangerous advice being churned out over and over again.

 

I find it funny how AuDs treat the 250 Hz-8,000 Hz audiogram like it’s an infallible objective measurement. It’s known that there are problems with the audiogram, like how it doesn’t measure hidden hearing loss. She immediately dismissed my question when I asked if an extended audiogram up to 16 kHz might be more meaningful in this case. She told me that humans can’t hear up to those frequencies. Isn’t humans hearing from 20 Hz-20,000 Hz a common established fact? The audiogram is an outdated test and the only reason it continues to be used is because it’s easy to read and AuDs are very stagnant to change.

I also think it’s pathetic that my audiologist told me my audiogram is perfect and therefore the tinnitus and hyperacusis are not noise induced. Well wtf is it then? She said “something“ must have “triggered” the H to set off in my brain. Yeah... like maybe an acoustic trauma. It tends to be treated as a purely neurological condition, but it makes sense considering some don’t even think hearing loss is linked to hyperacusis. The medical world is deplorable.

 

Agreed. She also noticed I was resistant to the idea of antidepressants and she asked me what I had to lose. I said worsening, to which she told me that my hyperacusis is already pretty bad and can't get any worse.

Considering the fact that there are people with this that can't laugh or eat crunchy foods, I think the pit sinks a whole lot deeper.

 

The worst case I’ve ever seen on a forum:

https://www.tinnitustalk.com/threads/tinnitus-and-hyperacusis-has-turned-into-chronic-ear-pain.920/

 

Holy shit. And the first reply is asking him if he thinks it's psychosomatic.

 

Those were different times.