I’m looking out my bedroom window onto a gloriously green backdrop of sunlit trees and sweet-Septemberness. I’m grateful this view is so pleasing, as I haven’t moved too far from my bed for several days in a row. Though it’s only been a month since my last ear attack, another has shown up unexpectedly to cast its ugly spell.
I’ve been relatively quiet navigating this ailment, which feels ironic as the ailment itself is so, so loud. Each time I adjust to a new symptom, or worsening of an existing one, things seem to take yet another tumble. I’m going deaf in one ear. I have ringing (tinnitus) all day, every day inside my head. I’ve had to leave my job. I’ve been ignored by doctors. I’ve had to pretend everything is fine, simply to survive. I’ve had to prove what I’m saying is true. I’ve had to spend days at a time, completely debilitated in my bed…
It started on January 4, 2011. I was in my last year of University and had just returned from a New Year’s trip to Ottawa to visit friends. I woke up feeling like my left ear was plugged. “Probably from the flight,” I thought to myself and didn’t add much concern otherwise. I was in my last semester, of my last year of university. There were other things that required my attention. But a few days went by and the sensation of fullness and muffledness didn’t subside. I went first to a Pharmacist who suggested I try nasal spray to help drain the sinus passage – the likely culprit! I did this for about a week without any change. It was then that I made an appointment with the campus doctor.
It was a cold, rainy, January afternoon. The doctor asked me a number of questions and conducted the ‘Rinne and Weber tests’ – placement of a tuning fork on various places of my head, while I offered feedback on what sounds I heard and where I heard them from. The doctor left the room for a few minutes, saying he had to make a phone call. When he returned, he informed they were waiting for me at the emergency room at the QE II hospital. Apparently, I had failed the tuning fork tests miserably.
I walked to the hospital alone in the pouring rain. I had no idea what was wrong, what they were planning to do, what the tuning fork tests meant …
When I arrived, I was taken immediately into a treatment room, accompanied by two Ear Nose and Throat (ENT) interns. They explained they were going to puncture my eardrum in hopes of draining trapped fluid. Looking back, I would have handled this moment and dozens more differently had I had the confidence and knowledge that I do today. I was given little to no information about the procedure, the possible side-effects, what my options might be, etc.
My head was strapped down to a table (yup) and a piece of medical machinery was maneuvered over my left ear, above the table. They poured liquid freezing (another irony, as the “freezing” felt like molten-lava – painful and fiery) into my ear and lowered a needle point tool towards me. I could hear the eardrum make a pop as they punctured a hole in it. Nothing drained.
I saw an actual ENT within the hour, who gave me a prescription for steroids and told me to take them for 2 weeks. The “ear drum procedure” hadn’t worked.
A few hours after I left the hospital, now in the company of a plugged AND sore left ear, there was a strange noise that started inside my head. It was (and still is) next to impossible to describe. I would later be comforted by my audiologist who sympathetically said, “there simply are not words in our language to describe what tinnitus is like”. Tinnitus (TIN-ih-tus) is the perception of noise or ringing in the ears. Tinnitus happens when we consciously hear a sound that does not come from any source outside the body. It is not a disease, but a symptom of an underlying problem. The noise is usually subjective, meaning that only the person who has tinnitus can hear it. This noise varies for tinnitus sufferers. Everything from roaring, to hissing to high-pitched squealing – this is the kind that I have.
I would go back to the ENT after finishing the prescription to have both a hearing test and to let him know A) the steroids didn’t seem to change the sensation/plugged feeling I was experiencing B) but I DO have constant ringing now!
The hearing test showed that I had experienced “sudden hearing loss,” resulting in a 20% loss of hearing in one ear. There was no identifiable cause for this to happen, though the ENT speculated I had contracted a viral infection, leading to this outcome. At this point, I was told two things: First, they didn’t know what had happened, or why, or if it would go away. And second, the tinnitus was the outcome of hearing loss. My brain was recreating the upper range of sound that my ear could no longer hear. I asked why the ringing started only after the eardrum puncture procedure. The answer was defensive and incomplete, “it’s from the hearing loss” the ENT repeated. To this day, I’m skeptical but it would prove to be the first of many times that it wouldn’t matter what I thought. I was completely at the mercy of the medical system. One that would let me down over and over and over.
I cried every day for a month. Maybe a few days more. It felt impossible to get used to this alien sound in my mind. I was fixated on it. There was no such thing as silence. No such thing as sitting by the ocean and hearing nothing but the waves. No such thing as settling into a quiet bed at night. No such thing as lack-of-distraction in every single moment of my waking life. The tinnitus I hear is unlike any day-to-day sound I could compare it to. It’s more “digital” or foreign. It’s so high-pitched and granular, it almost feels like a physical sensation as much as it does a noise. At times, the left side of my head actually felt swollen. Like it was an inflated balloon, drifting away from my body.
I would go for a follow up hearing test in April, 2011. The test showed that the hearing loss was worsening. In just a few months, the hearing deteriorated by another 2% - the equal increment to which the level of the tinnitus would grow louder. They gave me another round of steroids that didn’t work and told me at this point, it would likely be something that I would have for the rest of my life. There was no cure, no diagnoses, no way to know why it was getting worse (the sudden hearing loss theory no longer seemed accurate), and no treatment. The audiologist (who I liked very much. They have far more empathy and patience than any doctor I’ve ever seen) explained that many people struggle with coping mechanisms for tinnitus. Psychologically, it can drive people mad. Like, end up in a treatment centre mad. It would be best to explore my own ways of coping: sound therapy, avoid noisy environments, avoid meetings in boardrooms where several people are talking at once, avoid fatigue, avoid stress, avoid caffeine, avoid alcohol, avoid excessive exercise, avoid more than a few hours of screen time a day, etc… I was 28 and just finishing a degree in Political Science. I was social, active, ambitious and recently, told I had to “figure out a way not to go nuts while I endured an invasive fire-alarm-pig-squeal-noise in my brain for the rest of my life”. Good luck! And that was it.
I started regular meditation. It was really hard and bothersome. I mean, meditation is hard at the best of times, no? But it was my attempt at mentally dealing with “silence” in a now un-silent headspace. I still practice this. It’s still difficult and frustrating. But it’s one of my many self-imposed trainings that prevent me from throwing myself off a bridge.
That same April, 2011 my Mother was diagnosed with stage 4 colon cancer. I left my (then) job, my apartment, my life as I knew it and moved home to my childhood home for almost 2 years to help caretake for she and my grandmothers.
**A reminder of things to avoid when you have tinnitus: stress, fatigue, caffeine, noisy environments, situations that require focus.
My mother passed away in October 2013. I know I’m glazing over a chunk of time here. It’s not to say that nothing with my health happened, but rather the health of my mother far exceeded the priority of my own. It’s just the way it was. During this time, I earned a Masters degree, starting long-distance running, met my (now) husband and found myself propelled into adulthood. Lots happened.
In 2014 I would begin a new job with the provincial government. The past few years hadn’t been about me. They hadn’t been about my ear, my opportunities, my dreams, my life. Though I was told from the beginning that I would struggle in this type of work-environment, it’s what I was trained to do and what I loved to do! It was also the year that I would deepen my artistic practice. Most of you know me now as a painter, rather than someone who works in an office (thank god). Looking back it’s amazing that my soul must have known that this skill would eventually equate to my survival.
Working in government is an interesting experience. To truly capture the nuances of the ups and downs, I would certainly need a separate blog. I find myself grateful to have a better understanding of the inner workings of everything from legislation to how funding is decided on. It’s not easy. I still can’t believe the negative, derogatory and utterly offensive comments I would regularly hear about my co-workers (our politicians) from those in the public. Imagine if I called your co-worker any slew of childish names and threatened them in public form! It was an emotional aspect of the job I never really got used to. That’s not to say any government is perfect or doesn’t make mistakes. Though, I’ve yet to meet a single human being who fits that bill. I can whole-heartedly say that my boss was the hardest working person I had ever met. Which, as his assistant, meant I was the second hardest working person I had ever met.
I had no idea what was going on … I couldn’t hear … but learned that people typically accept someone who nods in agreement with a smile on their face!
Within a year of working in a high-stress environment for upwards of 70 hours a week, I felt a shift in my ear health. The ringing had gotten worse over time and I was feeling constantly exhausted. I was spaced out and had difficulty concentrating for long periods of time. I found myself doing a LOT of smiling and nodding at social functions and board meetings. I had no idea what was going on … I couldn’t hear … but learned that people typically accept someone who nods in agreement with a smile on their face! It was my defense mechanism. You now know me as happy and cheerful and incredibly agreeable! I made an appointment with my audiologist for another hearing test. This time it would show I had lost approximately another 10% hearing over the past few years. Why? What was happening? Why was this getting worse? And as a reminder, with the scale tipping down with my hearing strength, equal increase in the tinnitus was happening. Ringing = loud.
I was advised to try a hearing aid. I had to have a couple of fittings to get it “right,” but it never felt comfortable to me. I hated the way I could hear my hair brushing up against it, or how the sound of my own voice was as though I was talking into a microphone. I tried it for a few weeks and realized it wasn’t the solution. It only drew attention to the problem. One of my greatest coping mechanisms is to ignore the sound as best I can. Find a distraction (music, TV, conversation). I felt like the hearing aid was a big-fat-flashing-red-reminder that there was a problem.
I didn’t keep the hearing aid.
By Winter of 2015 I was starting to fall apart. I experienced my first “attack” or “flare up” as I have called them. I started having these episodes where the tinnitus would get so loud, I was left in absolute mental agony. No one can see this happening. It’s completely isolating. For anyone who deals with mental illness, or chronic pain you can relate to the feeling of hopeless invisibility. You want to scream at the top of your lungs in frustration. It’s lonely, maddening and there’s not a darn thing you can do about it. Since that first attack, I’ve had about a dozen more. They’re getting worse and more frequent now and go a little something like this: tinnitus gets deafening loud and sounds more like a buzzing than a squealing. This lasts about 48 hours and then transitions into a 12-hour migraine that makes you want to papercut every inch of your body, just to feel a different kind of pain. The entire left side of my head feels swollen and big, like the football-head-angry-baby on Family Guy. Days 2-4 I am completely incapacitated. My energy level is zero. I have to stay in bed almost exclusively. A walk to the kitchen, or bathroom is exhausting. My head feels hazey, I can’t really think, drive, create – I can barely feed myself, much less engage in any productive activity. I am dizzy, sometimes nauseous, feverish, can barely open my eyes and my balance is so off, I often run into walls or trip over my own feet. This stage is followed by a 2-3 day “hangover” feeling of building my body back up and trying to play catch up on all of the things that have been ignored for 6 days. In a world where we are already pressed for time, imagine having 5-6 days just randomly wiped out from your life. There are endless things that might be scheduled or going on in my life. All of them, without any warning, have to be cancelled. I am a ghost.
Like a few doctors I had seen in the past, my new MD at Springview Family Practice in Halifax said, “I won’t give up on you”. I guess this meant he really wanted to help! I don’t know why I believed this. I had heard this at least 3 times before with no help at all but after 6 years, was desperate to believe someone might actually look into this with enthusiasm. Take on the challenge, ya know? I had never had bloodwork, or any testing other than hearing tests.
This appointment would mark the beginning of 3 (more) years of utter ridiculousness with the NS health care system AND my health insurance company. I’ll map out a bit of a timeline with some key points, recognizing how long this ordeal already is:
1. November 2015 – My family doctor ordered a CT scan in hopes of finding a cause for my attacks. He said I had a “text book case” of a brain tumour.
2. January 2016 – A call from the hospital saying I had to have an MRI, not a CT scan. I make a follow up appointment with my doctor who has to resubmit paperwork.
3. February 2016 – I call the MRI clinic, as I had not heard back about an appointment date. They inform they have no record of this request. I call the CT scan unit and they say that they submitted the paperwork to the MRI clinic and didn’t know why an appointment hadn’t been made. I have to go to the doctor again and request the paperwork be re-submitted.
4. February 2016 – I start seeing a psychologist. Dealing with this condition, working upwards of 70-hour weeks, while feeling like no one is helping led to me feeling like a shell of my former self. I was diagnosed with extreme depression.
5. April 2016 – I am put on medical leave for 2 weeks.
6. May 2016 – MRI test. My medical leave is extended for 100 days, as my symptoms are only getting worse. My doctor doesn’t offer any tips, or suggestions as to what’s going on but rather blames it on my age (?) – I was 34. I don’t know why this is relevant, or even mentioned.
7. August 2016 – My short-term disability runs out and I am required to submit paperwork for long term disability (LTD). I have to provide the insurance company with bi-weekly evidence that my condition has remained the same.
8. September 2016 – I go back to my doctor to request this paperwork, only to find a sign on the door saying he had retired and would not be taking any more appointments. I had no family doctor. I had no “proof” that the condition I had been experiencing for 6 years (and worsening) hadn’t suddenly cured itself. Because I had no doctor, I could not provide medical documentation (I should also note that my Psychologist’s written recommendation that I should NOT go back to work was insufficient and unaccepted). I had, however, been referred to an ENT while my doctor was still working. My paperwork would get lost again, as my doctor’s office provided the wrong contact information for me to the ENT’s office. Once this finally get sorted, my appointment is made for August 2018. TWENTY months later.
9. October 2016 – I contact the LTD case manager to explain the circumstances. My options are: 1) go back to work 2) Resign and remove myself from the “insurance system”.
10. October 2016 – I choose to resign. I know the state I’m in and simply can’t put myself through this anymore.
During the next year and a half, I dive into art. I slept a lot. My body was completely worn down, my spirit defeated and my ear the same as it had been all along. I did start to feel better having removed myself from all of these appointments and paperwork. I took myself hiking in the fresh air and fed myself good food. I did endless amounts of yoga to try and improve my balance. I read articles and learned about my triggers. I said no to social functions and loud environments (which is easier said than done, as I’m married to a rock-musician!). I was feeling better in the day-to-day but still experiencing my attacks and the hearing certainly wasn’t improving.
In May 2018, I started a new job. Not because I necessarily wanted to but because I had been attempting to survive off of an amateur artist’s salary for more than a year now, and it’s simply not sustainable. It would be 4 days a week, which felt more manageable than most other options. It’s not in my field, but my choices are limited. The first month was pretty good. I felt more or less ok and was picking up the new responsibilities. Within 2 months, I started to dwindle in energy levels and depression tendencies. By month 3, I was exhausted and started experiencing frequent headaches and had my most brutal attack to date. I still go to work there, 4 days a week.
Just last month, on August 8 I FINALLY had an appointment with the ENT. I was legitimately excited. I couldn’t wait for some answers and support after all of this struggle and endurance. (**Funny Fact: You may think I’m making this up, but almost EVERY visit to a hearing clinic or doctor includes someone’s name being called MULTIPLE times before they hear it. I actually wait for this to happen now and snicker to myself.) The ENT made the same comment that I heard now for the fourth time, “I’m not going to kick you to the curb” – I was optimistic again. He said the most basic of tests had not been ordered during the past 7 years and requested I have another hearing test and something called the caloric reflex test (sometimes termed 'vestibular caloric stimulation'). This is a test of the vestibulo-ocular reflex that involves irrigating cold or warm water or air into the external auditory canal. Basically, they induce vertigo and test the strength/function of the ear during recovery. It’s unpleasant but not painful. He also said that the MRI showed I had a cyst in my left sinus-cavity but that was only coincidental and unrelated. Sounds bizarre that this has no correlations, but what can I say? I provided the ENT with a typed timeline of my experiences and changes, as I had learned that these appointments are typically rushed and impersonal. This way, I could at least fool myself into thinking he had the full story. I also pleaded with him my frustration of feeling “punished” for being tough. For taking things into my own hands and working my butt off to try and heal and manage this on my own. I have tried the following remedies: massage therapy, osteopathy, physiotherapy, acupuncture, chiropractic, sound therapy, meditation, vegan diet, vegetarian diet, keto diet, juicing diet, working alone, working in a group, hearing aid, psychologist… I even had a guy burn herbs and wave the smoke over my ear. I think he was ridding of bad spirits? Point being, I’m open and exercising any and all of my options. I do my best not to complain as that helps nobody. I have trained my mind and body to be tough and persistence, despite this challenge. I have heard of so many people that “lose it” with this type of condition. I am mentally tough (and stubborn) and feel that my positive and persevering attitude are making it appear that I am fine. This is possibly the most frustrating aspect of all. My attempt at normality is making my condition appear “unbelievable”. “You look like you’re coping well” the ENT says … completely missing the point that looks can be deceiving. If we’re still judging books by their covers, I agree I look like Anne of Green Gables most of the time. Sadly, I feel more like Frankenstein.
I rarely appear “sick”. Many of you reading this might be surprised to know I live everyday feeling like this and making these negotiations. But isn’t that everyone in silent suffering?
This is a good segue to a choice I think is important to both note and admit to. I don’t always do the things I’ve been advised to, to best manage my ear health. For example, I drink coffee in the morning. Though selectively, I still go to my husband’s rock shows. He’s my husband! I’m going to Las Vegas with my best friend this month, around loud noises and chaos. I know I will pay for these choices, but I still need to live. It’s kind of like being lactose intolerant but every once in a while, you splurge on the ice cream knowing damn well you’ll have a belly ache because of it. I make compromises with myself, knowing that you only live once and have to still enjoy the things you love, despite the consequences. I rarely appear “sick”. Many of you reading this might be surprised to know I live everyday feeling like this and making these negotiations. But isn’t that everyone in silent suffering? My best treatment and management is being home in a quiet space, where I can rest when I need to and avoid stimulation. Sounds like a hell of a fun life, no?!
The results of my most recent tests showed that I had now lost 50% hearing and 40% function in my left ear. Hearing is hearing and function are things like balance control, dizziness and cognitive reflex. Having this deterioration meant living every day at a disadvantage. I would suffer from fatigue, lack of concentration, trouble in noisy environments, trouble with balance, trouble keeping up with conversations and trouble just being my otherwise pleasant self. My audiologist submitted the results to my ENT that day and I was called for a follow up appointment just last week.
September 24, 2018 – I’m nervous driving to the follow-up ENT appointment. It’s like my gut is preparing me for the inevitable conversation I’ve had with every other doctor I’ve ever seen about this. I’m almost 8 years now with this condition. I still don’t know what it is, what caused it, why it’s getting worse, or what will be done about it. I’ve had to leave my last job, I’ve had to deal with random attacks that no one can explain, and I have to avoid the impossible and inevitable life-experiences like stress and fatigue that contribute to feeling even more lousy than I already do. My last hope, after 20 months of waiting, hinges on this doctor caring enough to help me.
When the ENT had his receptionist email him the test results while I was sitting across from him in his office, my heart sank. He hadn’t even looked at the file he had signed off on. He outright told me that. The conversation started with a series of questions I had answered just a month earlier. Obviously, he hadn’t read his notes either. It went something like this:
ENT: “What are you taking for the migraines?”
ME: “Well, nothing. I’ve never been offered anything, and I’ve been waiting almost 2 years to get in to see you.”
ENT: “I’m going to prescribe a daily medication to treat the vertigo and migraines”
ME: “I don’t have vertigo. The migraines come with my attacks, but are not my primary concern”
ENT: “Based on the test results, you should have vertigo”
ME: “I don’t”
ENT: Passes me prescription
He also noted that I am living with a disability. That it’s like having one leg shorter than the other, except in my case, there was nothing that I could do to mitigate the symptoms. I asked him if I just had to keep slugging away at life, despite feeling worse and worse all the time. “Yes” is all he said. But that I would come back in A YEAR, after trying the new medication (for symptoms I don’t have). I cried the whole drive home.
That was just shy of a week ago.
I am now on the tail end of another attack, still with no diagnoses, still with no solution and still with no idea why I’m going deaf.
What should I do?
**If you’ve made it this far (phew!) I’d like to add, I wrote this as both a means of personal therapy and as a reminder for anyone who has hearing loss/tinnitus that they’re not alone! I am currently pursuing naturopathic medicine and will be requesting a neurology appointment asap. These are my next steps! Stay tuned!