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.

 

Thank you for your kind interest, @Uklawyer.

I did have PTSD many years ago, for reasons completely unrelated to my current circumstances. It was resolved, but I have a theory that even when someone recovers from PTSD, that person may remain somewhat more vulnerable to the effects of new traumas, just as people who have tinnitus or hyperacusis may have ears that will always be somewhat more vulnerable to the effects of additional noise exposure, relative to someone with perfectly healthy ears.

I have eagerly noted some of your previous posts on the mind-body connection, especially those that mentioned Alan Gordon. I plan on listening to his podcast and/or reading his book soon. In December, I also read Joe Dispenza's "You Are the Placebo," which gave me some hope.

I have to be honest. Rumination is a huge problem for me. Not a day goes by when I don't think about the old woman who gave me tinnitus and hyperacusis. She didn't do it deliberately, but in hindsight, I can say with certainty that she was emotionally manipulative, doing everything she can to make me and other people feel sorry for her so that we would bend over backward to do whatever she asked.

Because she was so nearly deaf, colorblind, dyslexic, and plagued with many life-threatening health conditions, I was infinitely patient with her, even when she was difficult to deal with. Leaving her was always an option, but I couldn't bring myself to do it, mostly because at the end of every one of my visits, she would beg me to keep coming back, saying she needed me badly and that she almost entirely alone in this cruel world, etc. Sometimes she would even remind me--as if I didn't already know--about all the aches and pains in her body and all the devastating losses in her life. She had outlived two husbands and all three of her children and many of her oldest friends.

As pitiable as she was, there was another side to her that would sometimes come out, and it was monstrous. She had to be the center of attention at all times, and if someone doesn't oblige, she always interpreted that as abandonment or rejection. I saw her get upset because her housekeeper and her gardener had the temerity to go on vacation. I also saw her throw a tantrum at the audiologist's office one day when I drove her there for an appointment and we were told by the receptionist that her regular audiologist was out of town and that a substitute would be filling in. There are also sales clerks at stores around town that she refuses to speak to, because in her previous interactions with them, they would not smile at her. She even hates her next-door neighbor for keeping to herself and not becoming a close friend.

She was also a hoarder with hundreds of storage boxes piled waist-high in every room, leaving only an eighteen-inch-wide footpath for walking. She even had boxes on her bed and in her bathtub and on top of her oven. It was obvious that her frail condition made it impossible for her to lift and move all these boxes by herself, so when she asked me to help her, I felt morally obligated to say yes, thinking that she was sincere about decluttering and that I could make a difference in her miserable life. I also feared that if I didn't say yes to her that she would try to move the boxes by herself and get hurt. She'd already fallen many times in the past year when left unattended.

Week after week, I and one other person helped her declutter, but it turns out she was still buying more stuff and bringing it into the house, so the decluttering made no difference at all. I was furious when I realized I'd been duped.

The day I developed tinnitus and noxacusis, I had spent six miserable hours standing less than six inches away from her in her dining room, surrounded on all sides by stacks of boxes that she wanted me to open and sort and move. Unbelievably, even when she was standing six inches away from me, she could not or would not lower her voice for me, no matter how many times I asked. Every ear-splitting utterance coming from her mouth was preceded by a very slow, deep breath, the way a person takes a slow, deep breath before blowing out birthday candles on a cake. It was completely unnecessary for her to fill up her lungs and shout like that. I begged her and begged her to whisper, but she said, "I DON'T KNOW HOW," so I gave up.

She knew full well that I was exhausted and in pain when I left that day, but she still made sure to say to me as I was getting ready to leave, "DON'T QUIT ON ME! I NEED YOU SO MUCH!"

And what did I do? I quit on her. And I know she hates me for it, even though she has no right to feel that way.

What hurts the most is how callous her forty-year-old granddaughter is. She and I used to text each other every week to coordinate certain things involving her grandmother's care, but when I quit, she never even had the decency to offer me her best wishes for a full recovery. I never heard from her again. I believe she resents me for the inconvenience I caused by quitting, and now that I'm of no use to her family, she simply doesn't care if I become permanently disabled.

Someone on this board said that their experience with tinnitus has made them more empathetic toward other people's suffering. I may be the only person who has had the opposite experience. Empathy is what got me into this mess, and extreme self-preservation is the only thing that might get me out of it now.

 

Wow @ECP, that's quite a story. It is easy to see why the events leading up to your awareness/triggering of the tinnitus are so painful for you. You were obviously under extreme stress in helping another and this has thrown up lots of questions and emotions as you now try to cope with this difficult condition.

I can't help thinking that something needed to take you away from your situation of caring for this lady, despite your own sense of morality and desire to care for others. It almost feels like the tinnitus was giving you that message since you are such a kind person who, otherwise, would have persisted in enduring this stress.

It is interesting, because John Sarno, the back doctor that came up with the idea of mind-body syndrome (built upon by people like Alan Gordon), believed that repressed emotions (i.e. that are too scary to enter the conscious mind) that create internal conflict are the source of mind-body symptoms. The predominant emotion for him was rage. Your situation looks to fit this model perfectly: you, a caring person, eager to help others, undertakes this role with a needy old woman who then paces huge demands on you and goes as far as to endanger your health with her screaming/shouting. You develop this anger underneath, since a part of you can see how unreasonable and, actually, plain wrong this is BUT the caring side of you pushes on, putting this woman's needs first - whence the internal conflict in you, and the resulting physical symptom (tinnitus).

I am no professional, but from your story, I'd bet you are a prime candidate for a mind-body diagnosis. By the way, I don't think it's your PTSD that makes you more susceptible to contracting other conditions - I'd say, rather, that it is your personality traits that make you more likely to suffer in this way. I bet that you do not get overtly angry with people and express your feelings much to others, but, instead, hold a lot inside, afraid of upsetting or disappointing others. That you wish to please people, do the right thing by them and be a good person. Sarno described these as some of the traits of people that are most likely to have mind-body symptoms.

Ruminating when we get tinnitus is not unusual. Many of us blame ourselves and run back the events leading up to it, berating ourselves for what we did to get this. You know already that this doesn't help, but find it hard to let go of it. One thing you should try and do: be compassionate with yourself. This is NOT your fault. Treat yourself with loving kindness at this time as you try to make sense of this. Be aware of your feelings without judging yourself for having them. And know that you are not alone in this. More than that, never feel bad for caring about others. You are an amazing person for the care that you show for others - and you need to know this. Just as you are kind and compassionate for them in their suffering, be that to yourself as well.

I can understand your feeling of lack of empathy at this time, but do not dwell on that right now. Be angry at this woman, get it out, write about it and be kind to yourself.

I honestly believe that you can get through this and make a great recovery - people that have had tinnitus as a mind-body condition have completely rid themselves of it.

Here's one for you:

Tinnitus and Vestibular Disease with Rachelle

What you need though is to know that you are okay; know that you are safe; diffuse the fear, get back to things that give you joy, be mindful with the noise at the moment and be compassionate with yourself. Definitely start listening to Tell Me About Your Pain with Alan Gordon. You can do this, I'm sure of it.

 

Thank you, @Uklawyer. I definitely have some suppressed rage in me. As a woman, I'm not proud of it, since women are supposed to be the "gentler sex," but there's no denying that righteous anger affects us all at one time or another.

I'm not really a people pleaser in most aspects of my life, but I made a rare exception for this woman because she was so old and so frail. She was also someone I've known for fifteen years, so she was hardly a stranger, even if we were not close friends. The truth is that I believed there would be karmic retribution if I ever said no to her requests, for my husband and I chose not have children. Without the safety net of a large family, we don't know who we would turn to for assistance in our old age if our health should start to decline.

I know it's irrational, but I kept telling myself that if I cheerfully made myself available to this demanding elderly woman now, then forty years from now I will have a younger, trustworthy friend or acquaintance who will be equally helpful toward me in my hour of need. Funnily enough, I'm not so sure that karma works that way in reality. I see now that I could have politely, tactfully quit working for her, and it would have been all right for her and for me, even if it would have upset her greatly in the heat of the moment. So many little things upset her that it's beyond anybody's ability to keep her happy for more than five minutes at a time. Look up the word "irascible" in the dictionary, and you will find her full name, mailing address, and photo. You will also find her cross-referenced under the words "loud" and "ear-splitting" and "deafening."

Somewhere on the Internet, I learned that 40% of caregivers die before the person they are caring for. I would assume that the surprisingly high death rate could be easily explained by the fact that many caregivers are elderly people caring for their elderly spouses or parents that are even older, but even so, you would think that the person in the caregiving role would be the healthier of the two at the start of the caregiving relationship, or they wouldn't have taken on the role. What makes the relatively healthy caregiver decline to the point that they expire before the sickly person they are caring for???

On a metaphysical level, I suppose that the person being cared for has a conscious or subconscious way of sucking the life out of everyone around them, either by causing a huge amount of worry or feelings of obligation that then turn into physical manifestations of pain and disease. I'm not saying that every physically needy person does this, but I've read enough anecdotal stories on caregiver message boards to know that it can and does happen. The bottom line is that if you are a caregiver who seems to be happier or healthier than the person you are caring for, then the person you are caring for may start to use subtle guilt tactics to get more out of you-- more attention, more time, and more heroic acts of service. And if you are unable to see the big picture, you will feel like you have no right to set boundaries on their demands. After all, you're the one who is more able bodied than the person you are assisting, and you may even be younger. What kind of monster would you be if you start to say no?

Been there, done that. It's a mistake I won't be making again.

Thank you for the link to the podcast about the woman who had vestibular problems. I listened to it today. I plan to get into Sarno and Gordon next.

You're not the first person to tell me that what happened wasn't my fault, or that I was being very kind to this woman. I thank you for that from the bottom of my heart. Now if I could just make up for lost time. I've lost five months to illness, and that's time I could have spent working and making money, or pursuing extracurricular passion projects. What I want is a future where I can be productive again and--dare I dream?--accomplish so much that I make up for the five months of unproductivity.

I appreciate your presence on this message board. I've learned a lot from you in my short time here, and I hope to return the favor, if not to you then to someone else.

 

@ECP, I do not believe that you gave so much time and energy to this woman merely because you hoped that it would bring someone to you in your old age in the absence of kids. If, however, you held the belief that performing a good deed might ultimately come full circle, then I would suggest that that is a great attitude to have. To me, it's analogous to the tenet of "love thy neighbour as thyself" or "treat others as you would like to be treated yourself".

What stands out more is your concern that saying no would result in your being deserted in your hour of need. That would be the more "people pleasing" trait described in mind-body work. There is obviously fear around the thought of coping in later life. I wonder where it comes from. Is this based on experience? Is there anything else in your past relating to feelings of powerlessness, abandonment, isolation etc (just throwing this stuff out there).

I also note your reference to anger and perceived views on women. Anger is a perfectly normal motion - everyone has it - and it must be expressed in one way or the other. Why would you think that women should not be angry? If anything, they should be more angry than men precisely because of these outdated chauvinistic views, and, especially, in today's world with the struggle for emancipation and the pressure to be all things to all people. If you are not proud of this facet of being human, I certainly hope that you are not ashamed of it - if so, get rid of it because guess what emotion can also lead to the physical symptoms?

I think the principle of caregivers getting unwell is a known one - I read about it recently but don't remember where. When you look after, and take on the problems of, others, you will place yourself under stress. In this case, you took on such stress, plus the additional stress of dealing with a particularly difficult person. Add to it your own fears around not acceding to her demands and that suppressed anger, and you were, I imagine, boiling over inside. Dr. Schubiner said that:

"Most of the time when MBS symptoms develop, there is a feeling of being trapped in some way." And:

"In situations where people feel trapped by stressful events that trigger emotions from childhood hurts, or feel a conflict between what they want for themselves and what they feel they need to do for others, MBS symptoms are likely to develop, especially if there is no outlet to express these feelings or the feelings are actively suppressed."

Doubtless you were faced with such a situation.

I also note the following that you wrote:

I don't read this as being a general reflection on the thoughts of caregivers; I am guessing that this is exactly what you told yourself, with resulting feelings, i.e. "She is trying to make me feel guilty (you are angry) and is pushing for me to do more and more; but I cannot say no because if I do, I will be a monster (guilt)... AND something bad might happen to me (fear)."

There was clearly conflict there in such a stressful situation between your anger and your fear and guilt about not caring enough for this woman.

And when people tell you that this is not your fault, BELIEVE THEM. And when people tell you that you are a great person for what you have done BELIEVE THEM. Why? Because it is true. You should be proud of what you have done and for being who you are. The world needs more people like you. If you think back on this, do it with kindness, with compassion and with love... and in your case, with pride. But learn from this - and I am guessing that the lesson is to to love and care about yourself more.

One more thing. As much as you want to jump back into things and make up for lost time, do not place any pressure on yourself to do so. You will read about "outcome independence" if you read Alan Gordon but, basically, more pressure equals more fear. Don't look to an end point, but rather be comfortable (as much as you can) with the journey. As much as we want this to just go away, resisting and pushing will only give it more fuel. If you can, be with what you feel, know you are okay with it, that you are safe and that it will pass, without forcing the issue. This the mindfulness and somatic tracking stuff that you might have already heard. Being more engaged with life is great, but do not run from anything. Engage with yourself more, with feeling, with sensing, being present, surrendering, appreciating etc and do things gradually. For me it has been over 2 years and I am now looking for work.

You have not lost time - you have learned a great deal and continue to do so. Thanks for the kind words. Return the favour by being good to yourself. I hope this gives you more hope and useful information to go on with.

 

Hi @Uklawyer! I read your comments and many things you said are also taught in neural retraining programs. Have you tried any? I have read several cases of people improving (or curing) severe symptoms with this approach.

 

@Uklawyer, you asked where I got a fear of "coping later in life." I got it entirely from the woman I worked for. She used to be exceptionally healthy and vibrant for age--the sort of person who everybody aspires to become if they live to be in the eighties. But her decline was so sudden and unexpected that it came as a big surprise to her and everyone who knew her. Hearing her endless grievances about the indignity of old age and the tremendous grief of outliving all her oldest friends and relatives made me recoil with pity for her and fear for my future self. I really thought it would be cruel for me to do anything that would upset her, including telling her to lower her voice. (Stupid of me, I know.)

Re: the notion that women aren't "supposed" to be angry, I absolutely believe we have the right to be angry, but the woman I worked for was so touchy and demanding that she held petty grudges against shop clerks and other service workers (especially females) for the crime of failing to smile at her. I thought it was ridiculous of her to feel that way, but to keep the peace I didn't argue with her. Arguing with her about anything is pointless when she can't even hear me unless I scream to the point of hoarseness. So to cheer up on days when shop clerks treated her brusquely or simply didn't smile at her while interacting with her, I went out of my way to be extra nice and to never lose my patience with her.

I definitely felt trapped any time I was with her. She was too frail to walk unless she held onto my arm, but she shouted so loud that I loathed having her so near me. I was always torn between wanting to fling her away from me (and thus causing her to fall and break a hip) and letting her cling to my arm with infinite patience while she shouted near my ear. She was too proud to be seen in public while using a wheelchair, so everywhere we went, she hobbled along while holding on to me. The only place where she would not cling to my arm was the antique mall where she knew many people. "I don't want them to think I'm weak," she said, so she forbade me from taking her arm at the antique mall, instead commanding me to stand near her nonchalantly and without touching her. That made me uncomfortable, like I was an American Secret Service agent guarding the President from a discreet distance.

She did in fact fall at the antique mall one day, but like a Secret Service agent, I leaped forward and caught her in my arms and dragged her into a chair. I was angry at her that day for being so stubborn, but as she was paying me to do her bidding, I didn't believe I had the right to force her into a wheelchair or force her to take my arm. I should have quit that day, even though she never would have forgiven me for "abandoning" her.

I am still struggling with being patient with myself in the aftermath of my illness. The healing process has been so slow, and I hate not knowing how much longer it will take me for me to resume normal activity. "Outcome independence" is something I will have to work on.

I take comfort in knowing that you have a wiser, seasoned perspective on things. Thank you for sharing your hard-earned wisdom here with people like me.

 

Hey @Samy!

Well, I purchased a Curable subscription and started doing the bits on there (brain training, meditation, education and writing). I bought the book The Mind Body Prescription by John Sarno around the same time and got very interested in mind-body symptoms. I then I continued with reading, Sarno, Alan Gordon, Steve Ozanich). I then got Howard Schubiner's "Unlearn Your Pain" and started on the program. I am slowly working my way through, but it is mostly writing exercises - that I find difficult to keep at. I have also read a slightly different book by Marianne Williamson on love/fear and have read Kristin Neff on self-compassion, another ingredient in brain retraining. Currently reading The Body Keeps the Score by Bessel Van der Kolk, a psychiatrist who works with trauma/PTSD but discusses neuroscience and safety, the same themes that come up in other works.

I am a bit caught up in the reading at the moment, but I want to get a good grip on the role the mind plays in the origination, maintenance and perception of physical symptoms - I don't just have tinnitus. And since I have a history of anxiety and see links between that and other symptoms, the mind-body stuff, with its emphasis on the dysregulated autonomic nervous system really resonates with me. And, of course, we have the whole fear response/cycle with tinnitus, and this idea of the noise functioning as a danger signal, so I think it can be very helpful with dealing with this. I have been more positive recently, so I believe that reading this stuff and practising certain techniques is doing something.

Have you looked into any of this stuff?

 

@ECP, have you listened to any more podcasts? Are you seeing/hearing anything that might be of relevance to you?

It is natural to look at others and wonder if your plight might mirror theirs - but not rational to then make the assumption that it will and then suffer in fear because of it. Of course, you will find plenty of other people who cope absolutely fine in their years - sure, they have aches and pains and make more trips to the doctor, but they cope. And there are various kinds of help available to them. In this case, it is more the exception proving the rule for you I think.

If you don't mind me saying so, it seems as though there is a lot of raw emotion there, and that it is occupying a lot of space for you at present. The anger is front and centre as is self-blame/guilt (shame?). Again, it is not uncommon to ruminate on the situations that appear to have triggered the tinnitus. I do not have to tell you that this serves no purpose with respect to your recovery - you know this full well but will respond that the urge to do so is overwhelming. You will go back through the past, trying to pinpoint the cause, analysing your actions in order to understand exactly how this happened and why it did - and then turn to what you could or should have done to avoid it. It is hard to let go, but, ultimately, this is what you will have to do. It will happen in time. In order to accelerate the process, you will need some faith and strength to let go and resist the urge to relive the painful moments - a fruitless exercise that only serves to give rise to the same questions over and over and introspection and resulting criticism of oneself.

Perhaps some form of journalling in which you express the anger that is occupying you could help - anger directed at this woman - and some compassion for yourself. Perhaps that could aid in getting past this stage and healing some of the conflict that you have at the moment. It just seems to me that you need to get this stuff out rather than let it fester. If you do want to explore this, feel free to reply and I can give you some info and pointers.

Yes, it is slow, painfully so. All we can do is work on the mind to try to accelerate it (and use other physical tools to help with the noise if you so choose). Perhaps not make the distinction between not practising normal activity/practising normal activity. Everything is a process; a journey. There is no destination. That's where mindfulness can help - being in the present. Though that is hard with this condition, acknowledging it, diffusing the fear and then focusing on everything else inside and around you may help to shift perspective and lighten things a little.

Best wishes.

 

@Uklawyer, I definitely have a lot of raw emotion in me, and I don't mind you saying so. It's true, and I've known it for a while.

I am a lifelong journal writer who will always sing the praises of this activity, but in my experience, it's good for only certain kinds of things, not all. For me, journal writing is excellent for processing day-to-day thoughts and feelings, but it has never been helpful in processing traumatic situations that have had a serious impact on my mental or physical health. When I had PTSD some twenty years ago, no amount of thinking or writing about the situation helped me feel better. The only value I got from journaling about the situation was persuading myself that it was okay for me to be sad and angry about what happened, and okay to cut toxic people out of my life forever. But giving myself permission to be upset about what happened is not the same as removing the negative emotions so that space could be created for healing and growth. For that, I needed bodywork. As you are reading Bessel van der Kolk and the like, you understand what I mean. Trauma is stored in the body as well as in the mind. Acupuncture is my preferred modality for dealing with this.

This morning, I stumbled onto a podcast on the mind-body connection and chronic pain. It came with a transcript, so I eagerly read it so that I would not have to listen to it. (As someone who has always had a preference for reading rather than listening, I always gravitate toward podcasts that have transcripts.)

The subject expert is Dr. Rachel Zoffness, author of "The Pain Management Workbook," and she is being interviewed on the "Ologies" podcast, which features different types of subject experts (or -ologists, if you will).

Transcript below:
Ologies+-+Dolorology.pdf (squarespace.com)

And for those who want to listen instead:
Dolorology (PAIN) with Dr. Rachel Zoffness — alie ward

Thank you again for your kindness and insightful words. See you around on the board.

 

I do understand what you mean, @ECP. You know, when I was discussing this with my psychiatrist, I said it was a traumatic experience for me. It does not fit the psychiatric description of trauma from what I have been reading - well, not in the sense of PTSD - but the attribution certainly seems to fit, given the impact of this condition, as you mention. I also ask myself if other things that I have been through could be classified as trauma (with a small "t").

You will be more familiar with all this than me, of course. I am reading with interest though and asking myself what are the most effective methods of relieving these emotions/experiences. To that end, I would be interested to hear your views on the matter. Do you believe that body work is the best way of regulating the mind and the body? Does that depend on whether you are in shutdown (dorsal vagal state) or in sympathetic activation?

Are you using body work to help with the current emotions you are feeling around this?

Funnily enough my physio mentioned acupuncture to me today. I might look into it again.

Thanks for the link - I'll check it out.

I saw you writing in another thread a bit more heavily on your current frame of mind. I may have misinterpreted your state from your info in this thread. I hope you are doing ok. Hard as it may be right now, I really believe that you can get through this and get much better.