My Story

In 2003, I began a slow descent into deafness. But thanks to the efforts of my beloved family, Dr. Matthew Hanson of SUNY Medical Center and Terri Jackson of Temple University Hospital, among others, in 2004 I was properly diagnosed and today have my hearing and my life back.

My name is Christy Ellingsworth. I am a woman in my 30s, a wife and a mother. I have Meniere’s Disease, and although it does not define me, it is my constant companion.

For those of you unfamiliar with Meniere’s, it is a disease of the inner ear which affects the auditory and balance systems of the body. It is characterized by dizziness, hearing loss, tinnitus (ringing in the ear or ear noise), and a feeling of aural fullness. Meniere’s can cause incapacitating dizziness – known as vertigo – in many sufferers, and if left untreated, can lead to permanent deafness. Typically the disease affects a single ear, although it can affect both. Symptoms vary across sufferers, with some individuals experiencing pronounced dizziness without accompanying hearing loss (Vestibular Meniere’s), and others experiencing severe hearing loss without marked dizziness (Cochlear Meniere’s). These variations are regarded as two manifestations of a single syndrome. Unlike cancer or AIDS, Meniere’s Disease is a chronic illness and receives very little media or popular attention. The world-at-large knows little of our affliction, and although doctors continue studying the syndrome and have thankfully discovered means by which many can control their symptoms, there is no known cure.

My story begins after the birth of my younger daughter in October 2003. Within a few weeks of delivery, I began having problems with my right ear. Periodically I’d hear strange crackling noises, or felt like I had swimmer’s ear and would hear fluid moving deep inside my head. Occasionally when I would blow my nose, my ear would pop and stay popped for days at a time. All of this seemed odd and was mildly annoying, but at the time my family was suffering through cold season. My older daughter had just started preschool, and we were sick with something new nearly every week. I assumed the ear symptoms were part of one of the colds, and there was never any accompanying pain.

A couple of months passed, until one afternoon something extraordinary happened. I’d been resting in an armchair, and when I stood to get up it seemed as though my legs were an extra foot longer than normal. Looking down at my feet, I felt a frightening sort of disconnect. I tried walking, and with each subsequent step it seemed I might fall over, though I was planted firmly on the ground. I was terrified. That night I lay in bed wondering whether I’d be able to get up by myself when I woke. I had no idea what was wrong with me.

In the morning, I was still off-balance. It felt as though my body was raving drunk while my mind remained completely sober. I called the doctor. After a perfunctory physical exam and series of neurological tests, I was told I was fine. The hypothesis was that fluid in my inner ear was throwing off my balance, and the problem would quickly rectify itself. I was given a prescription for Meclizine and instructed to take it for the next few days until I felt better.

Meclizine is a medicine designed to treat motion sickness. It is also the medication of choice for Meniere’s patients who are plagued by episodic spells of vertigo. Meclizine is intended to act as an abortive drug; that is, when a patient feels an attack of vertigo coming on, the individual takes it to try to stop the attack. From what I have experienced, read and heard anecdotally from other Meniere’s patients, most find Meclizine pretty ineffective, and it certainly didn’t help me. I took it as prescribed and I sat on the couch, half comatose, trying my best to care for my infant daughter. On Day Four, I called the doctor. The nurse I spoke with was horrified. She told me to stop taking the Meclizine immediately and instead take Sudafed every four to six hours. That, she said, would dry the fluid in my ear and get me back to normal. I took Sudafed for a few days. It didn’t seem to be doing anything, but I took it all the same. In about a week I felt normal again.

My ear continued to bother me. Over the next few months, I occasionally heard the same crackling noises and felt fluid sloshing around inside my head. I noticed that my hearing seemed a little off but wasn’t alarmed by it, assuming I still had residual fluid that would clear itself out. One evening as I was getting into bed, I noticed a loud humming noise, like a truck idling in front of our house. I asked my husband to look out the window and see what it was. He pulled back the curtain and said nothing was there. I sat up in bed, startled. What? I went to the window and checked for myself. Nothing. I stood still and listened. No, the humming was definitely there, but this time it seemed to be coming from somewhere inside the house. I asked my husband, don’t you hear it? Don’t you hear that humming sound? He told me he most definitely did not. My husband’s extreme sensitivity to noise is legendary amongst family and friends, so I knew if he wasn’t hearing anything, something was seriously wrong. I went through the entire house, attic to basement, turning off every computer, electrical appliance, toy – you name it, every single object that could even remotely hum, buzz or hiss. And the noise remained. It was me. The noise was in my head.

I called the doctor in the morning. I was again told that I must have fluid in my ear and was advised to take Sudafed. The Sudafed didn’t seem to be doing anything, but I did as I was told. Days passed into weeks, and my hearing grew worse. The noise would fluctuate with no perceptible pattern. By the end of May, I was having difficulty hearing out of my right ear and the noise had grown to a steady SHHHHH. My daughters’ screams would pierce me to the core. It felt like I was going insane.

In June we took a vacation to the mountains of Vermont. Within days of our arrival, my hearing was so bad I was having difficulty distinguishing speech. The noise had grown even perceptibly louder, and it felt as though half my head was trapped in a paper bag. I called my physician, who told me it was probably just fluid but advised that I seek medical attention if I was really concerned. I went immediately to the local ER and was sitting in front of a nurse practitioner within an hour. The nurse listened to my complaints, looked in both of my ears and then administered a hearing test. I was almost half deaf. She said that my ear drum was bulging out with fluid and was unable to vibrate properly. Get rid of the fluid and my hearing would return to normal. She gave me some decongestant samples and said I would soon be well again.

Unfortunately, two days later I was back at the hospital. If anything, my ear had gotten worse. I saw the ER physician, and after an exam he told me I had what in layman’s terms is called “glue ear.” He explained that I had suffered a series of chronic and persistent ear infections which had turned the fluid inside my ear into a paste-like substance. He grabbed a sheet of paper and drew a picture of my inner ear, describing what he believed had happened to me over the course of the past months. He explained that the only way I could unclog it was to first take a nasal spray, like Afrin, which would open up my sinuses, and then take a second medicated spray to liquefy the gluey substance and get it moving again. He told me that Sudafed wouldn’t do anything, as it didn’t work on the ear canal. He said that Benadryl might help, but a super-strong oral decongestant like Drixoral would be even better.

What he had said made sense, and over the next few days I did as instructed. Unfortunately, my ear didn’t seem to be responding. Once again, I called my doctor’s office back in Philadelphia and asked for a referral to see a specialist when I returned home. I called and made the appointment immediately.

Two weeks later, the SHHHHH noise was louder than ever. When I arrived at the crowded doctor’s office, I was ushered into a soundproof booth for a series of hearing tests. I asked the technician several questions, and although pleasant, she was distinctly noncommittal. After the hearing tests, I was taken to an exam room and within minutes a nurse entered and began talking to me. I poured out my story to her, what I had been experiencing all the months before, what had happened in Vermont, everything up to the present. She was very attentive, and after I finished she said she’d heard stories of women having ear problems following pregnancy. I felt hopeful.

Ten minutes later, the doctor entered and immediately began rattling off facts about tinnitus – the medical term for the ear noise I’d been having for months. He explained that for reasons not understood, the tiny hair follicles inside the ear begin to shed in some people, causing noise – tinnitus – for which there is no cure. He described a patient who’d come to him complaining of tinnitus, who was eventually driven insane by the noise and began wearing tin foil on his head. He glanced over the results of my hearing tests, offering no explanation. Finally, he looked inside my ear. Twenty seconds later he asked me to tilt my head back. He then – without warning – inserted a long tube into my nostril, which he forced in until I cried out. He pulled the tube out, immediately threaded it into the other nostril and pushed until it was hanging down the back of my throat. I gagged.  He yanked it out. I sat there, temporarily stunned. He moved away, leaning casually back against a table before proceeding. “You have no fluid in your ear.” I sat puzzled for a moment and then responded that the physician in Vermont suggested I had something called glue ear. He looked at me blankly. “You don’t have anything of the kind. You have no fluid build-up.” I told him that for months doctors had been telling me I had fluid in my ear. If there was no fluid, then what could be causing the hearing loss? What was causing the noise? I wasn’t just imagining all of this. He said he didn’t know what was wrong, that he couldn’t find anything wrong with me. Before leaving he told me to come see him again in a month if I was still having problems. The nurse stood there for a second, sensing my frustration, then followed the doctor. She returned a minute later saying the doctor was going to give me nasal spray and a prescription for a 5-day steroid pack. She said he must think something is wrong to do that much.

I walked home, mulling over everything that had happened, searching for anything I might have missed. I decided to stop by my husband’s office and was almost too upset to speak. He tried his best to console me, then suggested I call my mom. I dialed her immediately.  My mother was insistent that I get another opinion. But what was the point? I’d seen three doctors already and none of them knew what was wrong with me. No one was going to help me. I would have to live like this forever. She assured me she would look into it and soon called with the name of an ENT at Temple University.

I went to my appointment with little to no enthusiasm. I was drained. My deafness seemed to grow with the days and the tinnitus was nearly intolerable.  After a short wait I was shown to an exam room and spoke briefly with a student doctor. Soon after, Dr. Hanson entered the room and listened while I related the details of my case. He seemed shaken by the visit I’d had with the previous doctor and asked me to proceed upstairs for a full array of hearing tests. I went to the third floor feeling the slightest bit hopeful. The initial visit had gone well, and Dr. Hanson seemed competent and concerned. I flipped through a weathered magazine until a voice called my name. The audiologist introduced herself as Terri and brought me into a small rectangular room. She adjusted earphones on my head, while asking a few questions. I found myself relaxing as she talked. She led me to a soundproof booth for the next series of tests. After they were over, she came back in and sat down. I went through a brief explanation of what I’d been experiencing. She immediately asked whether I’d had any dizziness. I said I had, but hadn’t thought much of it. Most mornings I would wake feeling dizzy and off-balance, but the dizziness seemed to pass after a little while.  Terri explained the test results and said I would have to wait for Dr. Hanson’s assessment, but that she believed I was suffering from Meniere’s Disease.

Downstairs, Dr. Hanson re-explained the test results and stated that he had three working hypotheses as to what was wrong. One: A past infection could have caused my hearing damage, in which case the deafness would be permanent, but the tinnitus would likely fade over time. Two: I might have something called Meniere’s Disease. Three: I might have a type of brain tumor. To make an accurate diagnosis, I’d have to have an MRI. He tried his best to reassure me, but I left the office with my stomach in knots.

The next morning I awoke feeling dizzy. The tinnitus was worse than ever, droning on in a steady amplified SHHHHH, and my ear felt inflated like a balloon. Every noise, however slight, seemed to reverberate inside my head. As I left to drive my older daughter to school, I began to feel slightly sweaty and sick. I made the school drop-off, then went to run an errand at the post office. As I walked down the sidewalk, the world began to shift sideways. I stopped still, and tried to catch my balance. The spinning continued. After several seconds, I turned around and carried my young daughter back to the car. I sat behind the wheel for a minute, trying to collect my thoughts. I was sick and unbelievably scared. What was happening to me??  I did not want to be out alone with my daughter. I drove home very slowly, with the road moving up at an angle.

I called Dr. Hanson as soon as I got in and described to him what was happening. He asked me if I’d ever experienced this type of sensation before. I confessed that I had. One night, a month or two earlier, I’d gone to bed and noticed the room spinning as though I was drunk, though I was completely sober. When I told my family about it the next day, we all thought it was strange, but I hadn’t thought more of it. Frankly, it had seemed so inconsequential, with my ear driving all else from my mind. Dr. Hanson said he was now almost certain I had Meniere’s Disease, but he’d still need the results of the MRI to be certain. As of that moment, he wanted me to go on a strict low sodium diet.  Salt was verboten.  I could no longer add it to any of my food and would have to be vigilant about how much sodium I was otherwise consuming. He stated that the average piece of white bread contains roughly 150 milligrams of sodium. I would have to keep my total consumption of sodium under 1500 milligrams per day.  I was perplexed, but assured him I’d do as instructed. The idea that sodium – or the lack thereof – could hold the magic key was at that point laughable. I already ate sensibly and kept fit.  But I would try anything. I spent the next few hours lying on my back, watching the wall shift. By late afternoon, I felt better.

Several days passed. I modified my diet to meet the sodium restriction and began noticing an immediate difference in my symptoms.  It was like a balloon was slowly deflating inside my head. My hearing was improving and the tinnitus seemed slightly less noticeable.  Soon I was going for the MRI. Though I am acutely claustrophobic, I went into the appointment feeling determined. A tremendous wave of relief flooded over me as the technician told me that my test results looked normal!  I was back at Temple within a week. Dr. Hanson explained the results of my MRI, which were fine, and then told me that I do indeed suffer from Meniere’s Disease.  Almost a year had passed between the onset of my symptoms and an accurate diagnosis.

Today my hearing has returned and the tinnitus which plagued me all those months has ebbed to an often inaudible hum. I still contend daily with the erratic symptoms of Meniere’s – and some days, particularly when the weather changes – are bad.  Over time I have learned to alter my behavior to compensate for some of this.  I no longer fly, I limit long car trips, and have eliminated dental work altogether.  I have given up amusement park rides – or anything that spins – because of the risk.  I don’t listen to an iPod anymore because even that sets me off.  Living with Meniere’s is a learning process.  You do your best to identify triggers for your attacks, and then you avoid them.  Fortunately, the low sodium diet has worked miracles.  As much as I do miss eating regular food, I’d have gladly given up eating altogether to feel normal again.  Being healthy is worth all the salt in the world.