Noxacusis and Tinnitus Caused by Repeated Exposure to Someone Who Is Hard of Hearing

Hello, everyone. I'm new to the board and desperate for support and advice. A year ago, I agreed to help out a 90-year-old woman with errands and light household chores because her health was declining and she could no longer drive.

Helping her was not a problem for me except for the fact that she was almost completely deaf, and she required everybody to shout at her or she wouldn't be able to hear them. She shouted too. She was as loud as a foghorn, 24 hours a day, even if you were standing right in front of her.

Early on, I wanted to quit working for her because all the mutual shouting was giving me laryngitis and headaches, but I thought it would be selfish of me to walk out on her, since I was in perfect health and she had a million health problems. Plus, she often spoke of the fact that most of her friends and family were already dead, and the ones who were still alive had children or grandchildren to take care of. It was obvious that she had set her sights on me as the ideal solution to her problems because I was married but chose not to have kids, and I worked from home, running a small business. I also lived only 30 minutes away, which was a lot closer than any of her living family members.

How could I say no to someone who was so obviously in need? So with great reluctance, I found myself working for this elderly lady one day a week for nearly 12 months. I liked her a lot and I considered her a friend, but the noise level was horrific, especially when we went for long rides in the car and she would insist on keeping up a constant stream of conversation. In addition to the headaches and laryngitis I inevitably got from trying to converse with her, there were also a couple times when I'd go home with my ears ringing, but it was always temporary. It never occurred to me that I ought to wear earplugs around her as if I were going to a rock concert.

On September 9, while spending a six-hour day at her house, I developed severe tinnitus in my left ear and an excruciating pain in my right ear that was aggravated by every word coming out of her mouth, as if she were stabbing me in the ear with an invisible knife. (I would soon learn, from spending hours searching the Internet and reading this message board, that this was called noxacusis.)

My primary care doctor had no appointments available until October 12, so I walked into the Urgent Care Center on September 23, desperate for help.

The doctor at Urgent Care said I had Eustachian tube dysfunction in my right ear. I was incredulous because I'd never had ear infections or Eustachian tube problems in my life. To me, this seemed like an incidental finding because as far as I was concerned, my real problem was noxacusis.

The doctor gave me a non-renewable prescription for 20 mg Prednisone pills to be taken just once a day for only five days. He said it might reduce the inflammation in the right ear and that it might help with the tinnitus in my left ear too.

Toward the end of the five-day course, the Prednisone hadn't helped. When I called my primary care doctor's office to let them know, they said that Prednisone doesn't kick in right away and that it also stays inside the body for a few days after you stop taking it. Their advice to me was to finish the full 5-day course and then wait a few days to see if my symptoms improve, due to the residual amount of Prednisone that would be floating around in my body. They did agree to give me another 5-day refill, which I could choose to take or not take at my own discretion.

After being off of Prednisone for only two days, I still felt no symptom relief and I was doubtful that getting back on a meager 20 mg dose for another five days would actually make a difference, so I went back to Urgent Care to ask for a second opinion. This time, I was seen by a physician's assistant who admitted that he knew very little about tinnitus and noxacusis. He was non-committal when I asked for advice on whether to get back on Prednisone or not. I asked him if he could at least give me a hearing test, and he said that they don't do that at Urgent Care. However, he said that my insurance doesn't require a referral for a hearing test and that I could make my own appointment with an audiologist if I wanted to.

On October 5, I had a hearing test. The audiologist said my hearing was in the normal range, but I was secretly skeptical as to the accuracy of the test because I'd been having a lot of difficulty hearing my husband when he speaks in a soft voice, and I was pretty sure that the test somehow wasn't reflecting that. The audiologist also said I should stop wearing earplugs to protect myself from pain because that would make things worse. This was another thing I was secretly skeptical about. I knew from reading this message board that many of you use your own discretion to decide when a situation calls for ear protection. If you don't use ear protection at all, some of you get a major setback.

On October 12, I finally got to see my primary care doctor. She gave me a referral to an ENT, but when I tried to get an appointment, I was devastated to find that almost no slots were available.

As it stands, I'm scheduled to see a physician's assistant in the ENT department tomorrow. I'm hoping that he doesn't call in sick and that my car doesn't break down, because if this appointment doesn't work out, there are literally no appointments on the calendar until late January, and I can't wait that long to get help. I've had suicidal thoughts, on and off, since early October, and I'm running out of ideas for home remedies. I've tried almost everything people on this board have suggested for hyperacusis and tinnitus, but it's all been hit-or-miss. Symptom-wise, I have good days and bad days, and I can never figure out whether certain things I've tried at home can be credited or blamed for that.

How do you guys hang on, especially during the first few months? My symptoms are so debilitating that I've been unable to work since mid-September.

I'm sorry this post is so long. If you made it this far, thank you for reading.

 

Hey @ECP, sorry to hear this has happened to you. I'm also currently in the first few months of debilitating hyperacusis and I've got tinnitus. I'm also noise induced.

What are your noise tolerances like? Which activities are too loud?

 

Sending you my best wishes. We’ve will get through this.

At your appt, make sure to review all your treatment options.

 

I think what the audiologist said about earplugs is nonsense. Earplugs are the first line of defense.

How did the doctor diagnose Eustachian tube dysfunction? What tests were performed?

It is a good thing you took Prednisone - it is the go to drug prescribed shortly after noise-induced tinnitus. OK, it does not seem to have worked - but at least you will never have to regret that you did not try.

How do we hang on in the early stages? Like you, we panic - we feel it is all over - we mourn the loss of our silence. Gradually we survive and learn how to live with the condition. I was desperate at the start - and I still have tinnitus but get by ok.

At least you have some better days - which is a good sign. I can only suggest you read around this board - most of us are trying different things - supplements - sound enrichment - sound therapy etc.

Good luck with your appointment and let us know what happens.

 

Hi, @volterra! Thanks for being the first to write back.

My noise tolerance varies greatly from one day to the next. Some days, I rely heavily on ear protection when I'm home, and other days I barely need it. Kitchen sounds are the absolute worst. The knife chopping vegetables on the cutting board, the sound of dishes clinking, the sound of tap water flowing out of the faucet and hitting the sink with a splash--all of that hurts my right ear. I also hate the sound of cellophane tape or aluminum foil being ripped off the roll. It makes me cringe every time.

Last month, I got upset because the creaky hinges on my cabinet doors were causing me excruciating pain, so I went around my apartment with a can of WD-40 in hand so I could grease every last hinge until it was perfectly silent. I was simultaneously ashamed and bewildered by my obsessive desire to do this, yet when it was over, I was very proud of myself because I felt like I had taken a step toward self-care.

How about you? From your profile, it looks like you've had your symptoms just a little longer than I have. What is your noise tolerance like these days?

I'm sorry for everyone dealing with us, but I do feel a bit better knowing I have people online like yourself who understand what it's like. This is apparently a rare condition, which makes it a lonely one.

 

Thank you, @Dave Cooper. The appointment went well. He found nothing obviously wrong with my ears, so he ordered an MRI. This is exactly the type of thing I've been hoping for since September. He says we might also do a CT scan, depending on how the MRI turns out.

He also felt my jaws and said they show some signs of TMJ, and he suggested I wear a mouth guard at night and try some jaw exercises. I did have TMJ over twenty years ago, so I was surprised that there are still some signs of it in my jaw.

 

Thank you, @Stuart-T. I agree, earplugs are more important than the audiologist seems to think, especially for people with noxacusis as well as tinnitus. It's hard to reduce stress when you're in pain or in constant fear of additional pain.

I am glad to hear you are adjusting to your own symptoms and carrying on with life. It gives me hope.

The Urgent Care doctor diagnosed me with Eustachian tube dysfunction just by looking into my right ear with an otoscope and getting a detailed description of my symptoms. Given that acoustic trauma can create symptoms that are similar to ETD, I can't tell if he is right or not. This is why when I had my appointment today, I tried to steer the conversation mainly toward the noxacusis problem, not so much the presumptive ETD. I'm no medical expert, but I think when my right ear stops feeling pain, any fullness or congestion in that ear will also go away. The two symptoms have always gone hand in hand for me.

Some people on this board have said it is ideal to start a course of high-dosage Prednisone within 2 weeks of the onset of symptoms. In hindsight, I regret not seeing the Urgent Care doctor until exactly 2 weeks after my symptoms began. Why my prescription as a mere 20 mg, I may never know, but at this point I'd rather stay off Prednisone and continue exploring other anti-inflammatories.

I've had lots of acupuncture at the low-cost community clinic near me, and I've even taught myself acupressure. It seems to help with the anxiety and the congestion and inflammation in the right ear. Alas, it hasn't done anything for the tinnitus.

I'm so grateful to this board and everyone on it. I've learned more from all of you than I have from my medical appointments.

 

Jaw exercises added a sound to my tinnitus.

 

Hi @ECP.

Tinnitus and hyperacusis can be complex and will affect each person differently. These conditions can impact on some people's mental and emotional wellbeing profoundly, especially in the early stages of onset, which may require them to visit their doctor for stress and anxiety management. Therefore, I believe it's best to try and keep things simple and not overcomplicate matters.

The stabbing piercing pain you describe in your ears is an indication that you have noxacusis. However, back in the day when I first got tinnitus with severe hyperacusis, I also had the stabbing piercing pain penetrating my inner ear, that felt like hundreds of sharp needles. Whenever I was exposed to slightly raised sound or during conversation with someone, I had to ask them to please lower their voice.

Over the years I have seen words like noxacusis and reactive tinnitus regularly used on social media sites. It would appear some people want to give more credence and gravitas to what has befallen upon them. Some people are not content with merely saying they have noise-induced tinnitus with hyperacusis. Now everything needs to be categorized in order to convey how much they are suffering. The more conditions one has signifies my situation is more serious than yours. I have read posts where people have said: I have tinnitus, hyperacusis, reactive tinnitus, noxacusis, phonophobia and anything else they deem is fit to throw into the mix. The strange thing, many of these people haven't been medically diagnosed.

I don't think this is healthy for one's mental and emotional well-being, so please be careful what you read and wait until you are diagnosed at ENT and if necessary, referred to an audiologist for treatment for tinnitus and hyperacusis.

I agree with the advice your audiologist has given you but only up to a point. If you are not careful, overusing earplugs, especially the wrong type, can increase your oversensitivity to sound and make the hyperacusis worse! Please click on the link below and read my posts: Hyperacusis, As I See It, New to Tinnitus, What to Do?

Go to my started threads and read: Tinnitus, a Personal View, The Habituation Process, How to Habituate to Tinnitus.

All the best,
Michael

Hyperacusis, As I See It | Tinnitus Talk Support Forum
New to Tinnitus, What to Do? | Tinnitus Talk Support Forum

 

@Jupiterman, I'm so sorry to hear that. I hope that new sound went away eventually.

I'll proceed with caution.

 

@Michael Leigh, thank you for those informative links.

I see your point about the highly specific (possibly overly specific) terminology. The reason why I've latched on to the word noxacusis is that in the short time I have been dealing with the medical providers in my HMO, I have gotten the impression that they take physical pain more seriously than they do the psychological distress caused by the sound of tinnitus or the perception that real-world sounds are unnaturally loud.

I still chide myself for waiting a full 14 days to visit Urgent Care after the onset of my symptoms. Painful as my symptoms were, I kept saying "It's all in my head" or "It can't be that bad" or "The pain will probably go away if I wait a little longer." Perhaps if I'd gone much sooner and complained more vociferously about the pain, they would have given me a higher dose of Prednisone that might have been more effective. 20 mg a day for only five days wasn't enough.

I am honestly not trying to draw attention to myself or use the word "noxacusis" to make myself out to be more of a victim than anyone else with ear problems. I just want the providers in my HMO to take me seriously, possibly because I myself waited two weeks longer than I should have to take my symptoms seriously. I feel as though I want to make up for lost time because of that.

 

You are welcome @ECP.

I do not believe you are someone that wants to draw attention to themselves or overdramatize what you're going through like some of the people I referred to in my post. Quite the contrary in fact. I have lived with tinnitus for many years, and corresponded and counselled people with this condition. My experience has enabled me to assess how tinnitus and hyperacusis (if present) is affecting a person's mental and emotional wellbeing in a relatively short period of time. Of course I am not always right but usually not too far off.

You are doing all the right things. I just wanted to advise you to be wary of reading posts that might draw you into a negative mindset. This can easily happen in the early onset of tinnitus and hyperacusis (noxacusis) which is no fault of your own.

Please take your time and read my articles and follow the advice of your audiologist regarding any treatment. By all means use noise reducing earplugs but they should be used with prudence as mentioned in my post: Hyperacusis, As I See It. Please start using low-level sound enrichment especially at night by your bedside. More about this is explained in my posts.

If you are feeling stressed or anxious which is something often associated with tinnitus and hyperacus (noxacusis), talk to your doctor, who may prescribe something to help reduce this. Things will improve so give it time. Please click on the links below and read my posts when you can.

Take care,
Michael

Tinnitus and the Negative Mindset | Tinnitus Talk Support Forum
Acquiring a Positive Mindset | Tinnitus Talk Support Forum

 

Thank you for your kindness, @Michael Leigh.

 

Prednisone did nothing for me... I took it 5 days after my acoustic trauma for about 12-14 days (I don’t remember) and tinnitus/hyperacusis remained the same, so please don’t blame yourself. I think is most for prevent hearing loss after the trauma. I also did 3 hearing tests and they were in the normal range. So sorry for us and the lack of treatment for these horrible conditions. I wish you the best.

 

My noise tolerance has been declining further, I'm not doing great.

 

Thank you, @Samy. I noticed that some people on the board really benefit from Prednisone and others don't. It's such a crap shoot. To avoid getting stressed out about all the "what ifs," I'm trying not to think about the pros and cons of Prednisone anymore.

I'm still debating whether I want to pursue the option of getting another hearing test. I've read on the board that audiologists could test for frequencies higher than 8 kHz, it's just that they don't always do it.

I was listening to music very softly over the weekend, and I could swear it didn't sound the same as it used to. Songs that have soft, high-pitched notes sounded a little bit "off" in a way that I can't quite put into words. These are pop songs from the '80s and '90s that I've memorized like the back of my hand, so I am sure that something is wrong, even if the audiogram says I have no hearing loss.

I guess it's a good thing that you've been tested three times and you're still coming up "normal" like I did. But you probably feel, as I do, that it's nonetheless frustrating because testing as "normal" and feeling normal in your everyday life are two different things.

I hope you experience some improvement in the coming months.

 

@volterra, I'm so sorry. Here's hoping that you'll soon be back on the upswing and that your body will settle on an acceptable baseline or, better yet, total remission from all symptoms.

I take comfort in hearing people on the board say that the first few months are the hardest, due to the extreme lability of symptoms.

 

Thanks for the kind words but I'm not expecting too much. My plan is just to protect as much as I can to stop it from getting worse. I'm seeing a bunch of audiologists and a neurologist to see if I can find something which takes the edge off a bit.

Slightly hopeful on hearing aids as I do have hearing loss and there is one story on this forum where someone's pain hyperacusis improved a lot from a hearing aid.

 

@volterra, let us know what happens with the hearing aid. I hope it helps you a lot.

 

@ECP, how are you doing now?

I just wanted to say that I have read this thread and other messages of yours. I did want to ask if you had any other conditions and then saw that you had PTSD. I have read about your personality type too. Did you resolve your PTSD?

I am currently working on mind-body syndrome - reading, practising techniques. It is big stuff, and some people in the online community and in the field have suffered from, and the texts reference tinnitus and hyperacusis among the many physical symptoms from which people can suffer that are induced by the "mind" and manifest through nervous system dysfunction that generates physical symptoms. Essentially, symptoms are stress-induced, which is not a radically new hypothesis - but our medical world seems a bit slow to acknowledge the interplay between thoughts, feelings and the body. Fortunately, neuroscience is paving the way for greater understanding of this connection by showing us how different parts of the brain light up in response to emotions and pain and how working on the mind and body can help restore balance to our nervous system and alleviate the physical symptoms.

Something tells me that this may be of relevance to you. You write in a gentle manner and express yourself well. I am guessing you are sensitive. You care for others, perhaps not so much for yourself. Anyway, are you aware of any of this stuff?

I hope you are making progress.

Best wishes.