What I hear you saying is (garbled subway announcement)

March 26, 2016 4:36 PM

I have trouble understanding much of what people say, but my doctor says my hearing is perfect. It's negatively impacting my life and I'm not ready to give up and accept it. I need to know what solutions exist before I give up and put all my energy into coping; I also need to know what I can say to a doctor to get something on paper I can show when this causes problems at work.

I won't understand what someone is saying most of the time unless:

1) there is a complete lack of background noise AND
2) their face is pointed at my face AND
3) they get my attention before they start speaking.

Volume is not the issue. If you repeat yourself louder, I will just hear louder garbled nonsense. I effectively cannot carry on a conversation in public for very long. Where others have a pleasant time at a restaurant, I'm struggling to keep up with the thread of conversation. Outside of perfect conditions, I'm guessing most of the time. I get some of the words and some of the sounds, and work from there plus facial expression, gestures, posture, context, and inflection. It's exhausting to interact with anyone because it's like I'm doing the damn daily jumble all the time, but it's sounds instead of letters.

Luckily, most interaction with strangers is essentially scripted (how's it going? Fine, how about you? Great! Have a good one! Take care!) It is taking a toll on my friends and loved ones, since every interaction with me is full of "sorry, did you say (thing)?" and "did you say sick as in flu or sad as in feelings?" and "can you spell that for me?" I'm just tiring to be around because of it. I get lost in movies sometimes if the theater is full and not silent; I probably saved my relatiionship with my sister when we agreed to just turn on subtitles all the time on the TV. I have to block off my other ear and concentrate very hard to understand the phone. This has always been the case; I used to get in trouble for ignoring teachers or my parents.

This has caused minor problems in the past at work and I'm concerned that it could become a big deal. I'm a reference librarian and constantly fighting to hear what people are asking. About once a week, someone will give up on me and walk off in a huff as I'm trying to interpret what they're asking for. (It has gotten a lot better since I got out of retail; people have a little more patience in the library.) I am concerned that this could snowball into a complaint later in life. I have had discussions with friends and coworkers where I've had to mediate them feeling disrespected because I'm apparently not listening.

I brought this up to a doctor about a year ago and was referred to an audiologist, who put me through a couple hours of tests and told me my hearing was perfect, and that any issues were probably mental so there was nothing they could do. I have a hard time believing that, and I want to try again with a second opinion.

If it is mental, then I want to know what options for coping with it there are or what the hell is going on. I'm willing to get creative with social engagements (let's go hang out in a forest! Let's bring our phones so we can text through dinner! Let's hang out in my silent kitchen and play cards!) and I have a therapist who is open to working with me on whatever I can bring myself to make a good faith effort with. Either way, if anyone here can tell me what words I need to use on a doctor to get a second opinion in writing acknowledging I have a problem, or what coping methods I should try, that would be amazing.

posted by blnkfrnk to Health & Fitness (20 answers total)

Sounds like sensory processing disorder is a possibility?
posted by JenMarie at 4:43 PM on March 26, 2016 [3 favorites]

Your hearing can be normal but you can still have some form of an auditory or speech processing disorder. This type of disorder is difficult to diagnose and I get the impression that it's often overlooked because there's no simple, easy test.

I think you need to find a new audiologist, and preferably one that specializes in auditory processing disorders. This might not be the answer you're looking for but it's an avenue to investigate.
posted by Kutsuwamushi at 4:45 PM on March 26, 2016 [17 favorites]

I saw an audiologist for similar (but more mild) issues and was told my hearing was fine too. She said that sometimes being tired can substantially affect the ability to process speech, and I think that's true for me (I don't sleep well so I'm kinda always in sleep debt.)
posted by needs more cowbell at 4:50 PM on March 26, 2016 [1 favorite]

I don't know much about this, but two terms to explore, in case either of them lead to more useful information and actual buzzwords you can take to your doctor:

* Executive function/executive function disorder. Back when I taught high school, I had a student who had a similar issue, and I think I was told by the learning specialist that he had an executive function disorder, so that his ears would process sounds correctly, but his brain couldn't decode them into meaningful words. Executive function is a hot issue with parenting/kids' learning differences right now, so there's probably a lot of information out there, but it may be very broad, as I think the term "executive function" is itself very broad.

* Central Auditory Processing Disorder. An audiologist once mentioned it when I interviewed her for an article. She was talking about kids, but the Wikipedia article seems to suggest it can occur in adults as well. It might be along the same lines of what you're talking about.

In general, I agree with Kutsuwamushi and needs more cowbell that you probably need a second referral to a different audiologist. I think a good one should be able to help diagnose an issue like this, even though it's not technically related to your ability to hear (as it pertains to your ears, etc.). They should also be able to help you come up with modifications and coping mechanisms for social interactions, work, etc. Good luck!
posted by bananacabana at 5:03 PM on March 26, 2016 [2 favorites]

Some suggestions from this article include lots of acronyms:

- APD
- ADHD
- SCD
- Dyslexia

The link also suggests trying a speech-language pathologist.
posted by aniola at 5:19 PM on March 26, 2016

I'm with the folks above. I'm no neurologist, but assuming your audiologist was doing their job right (and I'd say it would be worth getting a second opinion as your next step, just in case they weren't) this sounds neurological to me. Especially if you have a really hard time with speech but you do fine with other sounds (though even with regular hearing loss, symptoms like yours are pretty typical from what I've heard). If I were you I'd get that second opinion, and then assuming you get the same result as before I'd ask if they could recommend you to a neurologist or someone similar who could help you look deeper into the "mental" hypothesis. There has got to be some way to at least get you a diagnosis so that you can get some accomodations at work, and a neurologist might even be able to help you with coping mechanisms.

Also, would it be possible to get some kind of hearing aid that also has active noise cancellation in it? I have no idea if such things even exist; you'd have to ask your audiologist. The reason I suggest this is because you say one of your bugaboos is background noise, and active noise cancellation is good at canceling out (some kinds of) background noise but not very good at less predictable types of sound, like speech. Maybe even just try picking up some headphones with active noise cancellation, and see if turning them on without actually playing anything through them makes things any better. I doubt it would be a silver bullet, but maybe it would help at least some of the time.
posted by Anticipation Of A New Lover's Arrival, The at 5:20 PM on March 26, 2016

You may also have luck with trying a neuropsycholgist. They can test for the auditory processing stuff.
It can be expensive though.
posted by AlexiaSky at 5:51 PM on March 26, 2016

I brought this up to a doctor about a year ago and was referred to an audiologist, who put me through a couple hours of tests and told me my hearing was perfect, and that any issues were probably mental so there was nothing they could do.

This is a really horrible way for the audiologist to label whatever was going on.

Did they ever get back to your doctor with the results? Was your doctor interested in referring you to anyone else, such as a neurologist or speech-language pathologist, to figure out what was going on? If you followed up with your doctor and they just dismissed this symptom after that you should consider a new doctor.

It's not clear if this was a new symptom a year ago, or if it's been like this for you for your whole life. If it's a new symptom you certainly should track down if there is a medical cause.

someone will give up on me and walk off in a huff as I'm trying to interpret what they're asking for

Keep a legal pad and pen handy for patrons to write on, and say "I'm sorry, I have a mild hearing loss, could you write down the topic?"

If you get a diagnosis, in the US you might be able to get a phone both for home and work where an operator types what the other person says, and you can both hear the person and read it on a screen. The caller won't know unless you tell them. I don't know if this is available in all states.
posted by yohko at 6:01 PM on March 26, 2016

I agree with the posters who suggest that you might well have an auditory processing disorder. Try googling "capd" for more information, and to see if this might be applicable to you. Also try googling "capd [your city]" for local resources.
posted by merejane at 6:04 PM on March 26, 2016

Your post reminds me of a radio story i heard a while ago about a woman with auditory neuropathy
http://www.wnyc.org/story/your-brain-sound/
On the off chance that's helpful. Could be validating to listen to someone else's story at least.
posted by Gravel at 6:11 PM on March 26, 2016

I think I have a similar thing, where especially if there's a lot going on (think crowded restaurants or bars) I don't have a good solution other than I am really good at guessing. But you are not alone.
posted by KernalM at 6:23 PM on March 26, 2016

I knew someone a long time ago who might have had a similar problem. I noticed that he sometimes spoke with a bit of a Southern accent. I knew he was from New England, so one time I asked him why he was speaking with a Southern accent. He said he found that if he did that, other people would speak more slowly and then he could understand them better. I didn't ask him why he was having trouble understanding people, but presumably it was some sort of processing issue. Perhaps you can come up with your own tricks for getting people to speak in a way that is easier for you to understand.
posted by OCDan at 6:49 PM on March 26, 2016

I'm sorry this sounds frustrating as hell. It's definitely possible to have "perfect hearing" and this same dumb thing. I have a lesser degree of it, can't hear people in medium-to-loud places, make people repeat things too many times. I moved someplace rural where it's mostly quiet, which is helpful. I lowered my general anxiety which is helpful (i.e. gives my brain time to "catch up" to the sounds and so I don't think I CAN'T UNDERSTAND right away). I use the phone as little as possible. I, too, watch the tv with the subtitles on always and am super picky when the people I watch with are fidgety or making little noises.

So, partly just to say "I have been there" but also to say "This is real." It may be worth working with a neurologist to see what you can learn about this and then, if it were me, I'd be working with my job to work out ways I could be useful at work without maybe always being in the difficult to hear positions at reference. They should be able to find accommodations for you and while they may not be thrilled to do it (or who knows, they might be) they should be able to handle it. Don't be hard on yourself, this is a real thing and it's good you are getting it taken care of.
posted by jessamyn at 6:58 PM on March 26, 2016 [4 favorites]

I have this; I got an unofficial diagnosis of Central Auditory Processing Disorder. (An official diagnosis would cost a lot of $$$, and not worth it to me as an adult.)

I have also held conversations via text with someone sitting right next to me, because we were at a concert and I couldn't hear them at all - though their other friend could hear them just fine.
posted by spinifex23 at 11:53 PM on March 26, 2016

Your symptoms remind me of learning about Receptive Language Disorder in my neuropsychology class ((here's one website, although targeted towards kids). Most of the time kids are diagnosed with this through a speech pathologist (and probably includes other neuropsychological testing). I would call around and find a friendly speech pathologist and ask if you need to see them or a neurologist to start the evaluation process as an adult.

The audiologist was probably right (but has a poor bedside manner!)...the physical components of your ears can hear fine. But there's either some nerve or brain damage between the ear and Wernicke's area. Have you ever had a brain or head injury in the past?
posted by MultiFaceted at 9:06 AM on March 27, 2016

Wow, that list in the auditory processing wiki page is basically describing my entire life. How does one get properly checked for that, I wonder?
posted by Scattercat at 11:23 AM on March 27, 2016 [1 favorite]

Hi I'm an audiologist but not yours.

First, you should get another hearing test from a different audiologist. Your complaints sound very much like high frequency hearing loss. Most people with this hearing loss have the chief complaints that 1) speech is as loud as ever but they can't understand it (because the volume of speech is in the low frequencies, while the consonants that enable us to understand are in the high frequencies), and 2) difficulty understanding in noise.

I would even consider asking for an ABR (auditory brainstem response) - this would rule out something like neuropathy or a neuroma.

If it turns out that everything is normal, (C)APD is a possible diagnosis; but I will warn you, it is a very controversial diagnosis, and there is no standard way in which it is diagnosed or treated. There are no gold standard tests for it - and most audiologists don't even agree on what exactly it is or if it is a 'real' disorder. This is because it's more or less impossible to tease out from other cognitive impairments like specific language impairment or ADHD. The symptoms/signs of APD are very vague, and there is no real good way to treat it if you are diagnosed. In fact, the position of ASHA (American Speech Language Hearing Association) is that a diagnosis of APD is basically made only when the person has some of the symptoms and every other disorder is ruled out.

Only an audiologist can make a diagnosis of APD, but they will often work with a team - psychologist, speech pathologist, GP - to actually make the diagnosis. The tests commonly used for APD are basically speech tests - but they are altered in some way, so you have one word in one ear and a different word in the other, or speech that is low-pass filtered, or similar. The thinking behind this was that you could find what exactly the person has difficulty with and this corresponds to some processing area of the auditory pathway in the brain. This more or less is not actually true, and the common test battery has not proved to be a very good tool for diagnosis.

Often for kids, the CAPD diagnosis is made so that the child can get accommodations in school - seated in the front, maybe on a rug, maybe an FM system, quiet room for tests, etc. For you, a CAPD diagnosis won't mean much except to help you put a name to your frustration and maybe help you get accommodations at work. An audiologist will more or less tell you to make accommodations for yourself - don't eat at noisy cafes, look at people when they talk, etc.

I think in the next decade, we will have a much better understanding of CAPD, and much better tests as well. There is a lot of research happening in this area, and a lot of it is interesting and promising. Unfortunately right now, the science hasn't caught up with the folks who are hurting from it.
posted by Lutoslawski at 12:43 PM on March 27, 2016 [8 favorites]

Yep, CAPD. I find it astonishing (not that I doubt it) that it's a controversial diagnosis; all it does is describe a very specific thing by differential diagnosis, i.e. no hearing loss.
posted by lokta at 3:12 PM on March 27, 2016

I have honest to god hearing loss, not exactly what you are describing, but the type of hearing aids I have could help you a lot. Like you say, it's not just about volume. My aids have 3 settings:
- normal, where I hear everything around me
- "party mode" where they focus on the sound directly in front of me and muffle the background/side noise, and
- "phone" mode that translates the electrical impulses in the phone (or something, I'm not an engineer) directly to the aid and cuts out ALL background noise so that you only hear the person speaking. It is magic. Many movie and live theaters also use this mode so the sound goes straight into your aid.

Also, I can use it with my smartphone as a receiver (via Bluetooth) - for example, I set the phone by my TV's speakers, touch the app, and the sound from the TV goes directly into the hearing aids. I could also give my phone to a person in a noisy bar for the same effect. They speak into the phone, and that's all I hear.

I completely empathize with you - I could not function normally in society without hearing aids. Struggling to hear people is enormously taxing. Please see another audiologist. Make sure they do the test where they pipe static into the ear buds and have you repeat words back to them. I find it hard to believe you passed that test successfully.

Feel free to memail if you want more details about the hearing aids. I don't sell them or anything, and lots of the newer ones have similar features, not just the brand I have.
posted by desjardins at 4:55 PM on March 27, 2016 [1 favorite]

Response by poster: I appreciate everyone's answers, and I'm still thinking about what I want to do. I particularly appreciate that nobody told me I'm imagining my problem, since I often wonder about that. Thanks for the avenues to pursue and the validation; I feel a lot better.
posted by blnkfrnk at 10:27 AM on June 4, 2016