“Huh?”

Going all the way back to my early 20s, this has been an unlikely catch phrase of mine. In my early 20s, my boss would summon me into his office to tell me something. More than once—hell, more than several hundred times—I would have to make a split-second decision: Nod as if I knew what he had said, determining it to have been of little importance, or confess that I didn’t hear him. When you’re that young, people don’t believe you could be hearing impaired. Even I had a hard time believing it.

By my mid-20s, I was accustomed enough to my body’s strange short circuits that I didn’t try to hide them. I knew as spring approached every year that my hearing would fluctuate from perfectly fine to sounding as if I were listening through drywall. It came and went. I explained to myself that in my clubkid days I danced too closely to the club speakers and damaged my hearing, and that somehow spring allergies temporarily exacerbated my problem.

My grandmother had profound age-related hearing loss by her 70s, and our conversations were punctuated by many exchanges of “Huh?” and some laughing. All of us knew she couldn’t hear well. I would tell her that I couldn’t, either, and she would chuckle and, I’m certain, assume that the kid was trying to make her feel better about her condition. Nope. I couldn’t hear. And I learned from her. I would watch her at holiday dinners as she directed her attention to whomever was speaking, stealing quick glances at others for cues. If everyone laughed, she laughed. If everyone grimaced, she did, too, and would glance around with concern but wouldn’t always ask what was wrong. I felt terrible for her, but I quickly ended up in her predicament and recall especially during writing workshops in graduate school nodding and laughing as people said things I never heard.

Ah well, c’est la vie. Life goes on.

By my early 30s, I was nearly and sometimes fully deaf in my left ear, now accompanied by a mild high-pitched squelch or a maddening squeal heard at all hours of all days. At the time, I lived in Washington, D.C., a block away from a police station and a different block away from a fire station. Rarely did 10 minutes pass without sirens wailing past my window on Florida Avenue. One night I awoke with absolute terror when a siren suddenly came out of nowhere at full volume. I had been sleeping on my right side, with my ear to the pillow, and between the hearing loss and the deafening tinnitus in my left ear, I didn’t hear the siren approach until I turned over and suddenly heard it at full volume.

By then, hearing loss, as profound as it was, wasn’t my greatest problem. My body was short circuiting and shutting down in ways I never imagined were possible. Electrical shocks in my feet and lower legs. Killer pains in my elbows, my shoulders, my knees, my neck, that would jump from one place to another, sometimes staying for a few days, sometimes setting up residence for months. My vision would unhinge and produce double-exposure images. I was a mess, an absolute mess. Doctors thought I might have multiple sclerosis, and then after a couple years of arduous and expensive laboratory tests, one neurologist concluded I was either stressed or crazy, and another concluded that “something is definitely wrong” with me, but that his tests couldn’t define whatever that was. Both dismissed me.

Eventually, a new, disturbing symptom came for an unexpected visit. As I lay on my bed drinking coffee and reading through emails just before leaving for work, I suddenly felt a wave of heat move through my body, followed by a series of strange waves of disorientation. It’s difficult to describe exactly, but it’s like the feeling of falling suddenly inside a vehicle, like a sudden dip in the road or a decline in a roller coaster. The falling feeling isn’t an entirely bad one; it’s fun, in a way, as long as it goes as quickly as it comes on. Usually when this happened it did. This morning, though, something else happened.

 

The room began to spin around me. I had heard this expression before, but I never imagined that the expression was meant to be understood literally. The room literally looked as if it were beginning to spin around me, and I felt, literally, as if I had suddenly fallen through a trap door. Within minutes, my body felt as if it were in a no-gravity environment—and yet there was gravity. I could orient myself, just barely, by sight, but in a moment the sight of the spinning room caused an eruption of vomit. I clumsily fell off my bed and crawled on my hands and knees into the bathroom to continue vomiting—for how long, I had no idea. My body became so hot that I crawled into the bathtub with my clothes on and turned the shower on. Cold water soaked into my clothes and made them heavy. I sat with my face in my palms, falling, falling, falling as a full-volume constant whine buzzed in my ear. This is it, I thought. They’re going to find me in the bathtub, clothed and soaked, and not know what happened. What is it? Is this a stroke? The falling feeling was also a numb feeling. It lasted for so long that I had plenty of time to wonder what, exactly, this process was. Is this what a blood clot in the brain feels like? Is this what a seizure feels like? I wasn’t flopping around. Is it none of those things, just the feeling of leaving one’s body? Eventually, after an amount of time unknown to me—hours, I figured—it passed, and I was left with a tingling, “sparkling” sort of feeling. I was able to open my eyes, and found that I was able to see. The bathroom looked normal. I was still nauseated and felt weirdly empty. I left my wet clothes in the bathtub and stumbled back to my bed. I sent a short email to my office telling colleagues something had happened and I wouldn’t be able to come in, and then I passed out for hours. When I woke up, I felt normal, including the by-then “normal” buzzing and whining in my left ear.

I had no idea what happened to me. Because so many aberrant things had happened by then, including my left leg having fallen paralyzed while walking down a broken “stairway to heaven” length escalator at the Dupont Circle Metro station, that I didn’t know what to do and so I chose to do nothing. I told people about it, and I got over it. Until I had brunch one day with an old friend whom I hadn’t seen for years. I tasted the hot eggs and hashbrowns that had just arrived, and as soon as I swallowed, my body was overcome by heat. Within seconds, I knew what was coming, and I told my friend I needed her to walk me to the bathroom. She didn’t understand what was happening. By the time I explained, I couldn’t walk without help—I was walking without the benefit of being able to tell up from down—and she steadied me as we proceeded to the bathroom. I threw up as soon as I got there. I threw up a lot, and assumed eventually that I had no more contents in my stomach, and so I stumbled back to the door and told her I needed to go home. It was two blocks away, but she had parked more closely than that and offered to drive me. I threw up outside of her Jeep, and then several times inside of it. I threw up outside of my building, and then inside my apartment as soon as she dropped me off.

I figured out, thanks to the Internet, that this was classic vertigo.

I knew about vertigo. I had had motion sickness many times in my life and knew the feeling. I used to have a fear of heights and I knew the dizzying feeling that comes from ill-advisedly looking down. I didn’t know that vertigo episodes could come on spontaneously, or that they can be accompanied with other symptoms.

I should have known, but never really had thought about it, that the cause of vertigo relates to a physical disorder of the inner ear. In my case, I was about to find out, hearing loss and these nauseating dizzy spells were inextricably related.

I had seen over a dozen doctors in the preceding few years, all to no effect. I had had three rounds of MRIs in that time, EEGs, ECGs, EMGs, NCVs, evoked potentials, blood work for everything from HIV to syphilis to testosterone to anti-nuclear antibodies and just about everything else over that time—all to no effect. I had seen several general practitioners, three neurologists, one neuro-ophthalmologist, a rheumatologist, an allergist, a couple of ophthalmologists, and others I probably don’t recall. None had done anything to help me except a psychiatrist, who after several years effectively quieted some of my more mild symptoms with pharmaceutical drugs and far more importantly told me that I am physically ill, not imagining these symptoms as one doctor suggested outright and a few others implied, and gave me behavioral tools to cope with these problems.

So what should I do? One of the initial suspicions of my first doctor was that I may have an acoustic neuroma, a small tumor inside the ear canal, but the MRIs had ruled that out. What were the chances going to an ear, nose and throat specialist would be anything but a waste of time and money? I was a freak of nature: some of my medical labs showed physical problems, but none of them added up to anything doctors understood. What would an ENT specialist do? Look in my ear? Perform a hearing test?

The second question was enough to get me to an ENT specialist—curiosity more than anything drove me, as I had always wondered about the significance of my hearing loss. By now, all my experience with doctors had taught me to expect no real diagnosis—but at least I could find out how extreme my hearing loss was according to science. I hadn’t held a phone to my left ear for a decade because there just wasn’t any point. It was time to find out what the damage was.

As I filled out the paperwork in the ENT specialist’s reception room, I felt familiar pangs of awkwardness but willfulness as I checked off half the boxes of prior and concurrent symptoms. I wondered if this doctor would look at those pages, which I knew from experience many physicians would glance at and immediately classify me in their minds as some sort of hypochondriac, or else someone on death’s door.

I was given an audiology test. Faint beeps in one ear and then the other. You push the button when you hear the beep. I heard few in my left ear, in small part because some of the beeps were set to about the same frequency as the tinnitus. I was nervous. How many was I missing? How many times had I imagined I heard a beep and clicked the button to the phantom? I hadn’t been given this test since I was in school.

I was taken to a consultation room to wait. As I waited, my phone buzzed and then buzzed again and again and again. Work emails—but also several emails from my mother in rapid succession.

Subject: You had Lyme disease

Subject: [Blank]

Subject: David get tested for Lyme disease

My mother had been telling me this for years. “Lyme can come back, David!” she would say. No, it can’t, I would think. I had read this countless times. It’s a bacterial infection.

I had been diagnosed with Lyme disease when I was young. I barely had any memory of it—but my mother remembered it well. It clearly traumatized her, because she brought it up all the time. She had taken me to the doctor and I was evidently so ill I can’t remember much about it. My mother says I was “out of it,” and that I had a bad flu-type illness and joint pain. The doctor showed her a big red rash on my back and said “it’s Lyme.”

All this was running through my head when the doctor came in. I put my phone away.

The doctor had a manila folder with him, as doctors do. He introduced himself, asked what was going on. I told him about the longtime hearing loss, about the tinnitus, about the vertigo. I told him based on what I had read online that it’s probably benign positional vertigo because, basically, there’s no explanation for that and my whole body is defective with no explanation. He listened and then he took out a paper.

“You’ve definitely been having vertigo attacks. That is true. But take a look at this.”

He showed me a graph with little black dots moving across; they started high, dipped low, and then swung back up.

“I’m afraid it’s not the best news. You have a distinctive pattern of hearing loss that is characteristic of Meniere’s disease.” I had read about Meniere’s disease, and it sounded like what was happening to me, but I had dismissed it because every other doctor I had seen for every other problem had not been able to diagnose anything with a name. “It’s a disease based in the inner ear. It can lead to permanent hearing loss, and in some cases permanent imbalance.”

He explained the disease, the common and rare manifestations, and he told me that I would continue to experience vertigo attacks now and again—it’s part and parcel with Meniere’s. But, he said, it’s not hopeless. He explained that the disease occurs because fluid gets trapped inside the ear canal due to a physical deformity and water retention. He put me on a low salt, preferably no salt, diet, and he gave me a diuretic. He said that it may or may not help, but if it does, my hearing and the tinnitus should improve before too long. He apologized for having to deliver bad news.

HTTPS://WWW.DIZZINESS-AND-BALANCE.COM/DISORDERS/MENIERES/MENIERES.HTML
Characteristic hearing loss pattern (blue) of late-stage Meniere’s disease.

I was elated. As crazy as that sounds, I was elated because this was happening to me anyway, with or without a name—but being given a name, and having seen a graph documenting a specific pattern of hearing loss caused by a known disease process…after all these years and all these doctors…well, this doctor would have no way to know it, but when he said I have this disease, he gave me more confidence in my sanity.

It takes a toll when a person’s body is failing and medical practitioners tell that person that it’s all in his or her head. One doctor told me that. It also takes a toll when a person’s body is failing and a dozen doctors tells that person yes, something seems to be wrong, very wrong, but…*shrug* Good luck!

As I walked back to my office, diuretic prescription in my pocket, I read my mother’s emails. The first one told me that I had been diagnosed with Lyme back in 1997. I knew the first part, but I didn’t know exactly when. She had gone through her filing cabinet and found a photocopy of the prescription that my doctor had given me at the time. That was the second message—a scan of the prescription. Doxycycline, the standard treatment for new Lyme disease infections. 100 milligrams twice a day for 10 days. I had read enough about Lyme at my mother’s urging by then to know that there was controversy about treating Lyme disease, and that the standard treatment is 200 milligrams of doxycycline for 14 to 28 days. As I walked, my mind reeled…every doctor who had ever given me an antibiotic had told me to make sure I take every single pill because not finishing treatment could cause the bacteria to regrow. Was it possible that the dose I was prescribed had been too short a course to fully eradicate the Lyme disease bacteria from my system? My heart raced—I had a diagnosis and an explanation for my vertigo and hearing loss, and I had a lead for making one more attempt to find out what the hell was going wrong with my body.

This was the day that changed the course of my life.

I took the diuretic and cut back on salt for three months. I had a vertigo attack during the second month. My hearing and tinnitus continued unchanged.

I also found a specialist who treats Lyme disease patients. After beginning a combination of oral antibiotics, all of my symptoms became a bit worse—before they became much better. Since I began taking antibiotics almost three years ago, I haven’t had a single bout of vertigo. Around the fifth month on antibiotics, I experienced sudden relief from many of my symptoms—especially the nerve and joint pain that had nearly crippled me for years, and including the hearing in my left ear. I still have mild tinnitus that comes and goes, but my hearing has restored almost fully. I haven’t taken an antibiotic in about six months, and so far, so good.

It wasn’t exactly my idea to tell this story about my hearing loss. In September, I received an email on behalf of an audiologist, recounting the story of a patient who experienced “extreme hearing loss from Lyme disease.” I spoke with this audiologist, and in the next installment, I’ll share what she knows about the connection between Lyme and hearing loss.

Read the full interview.

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