Getting diagnosed with a chronic disease with no treatment or cure is like entering a Kafka novel

Published February 20, 2017 by lagmen
The Maloney van.

In the American sitcom Arrested Development, Liza Minnelli plays Lucille Austero, a wealthy widow with chronic vertigo. Across four seasons, the condition became a regular source of jokes as she’s hit by the spins and shown taking tumbles for big laughs. It’s played like physical comedy—slow-motion slapstick with a medical origin.

As a teenager, I was obsessed with Minnelli’s character. I used her exaggerated “I’m okay” to garner (no) sympathy from my dad when pulling myself off the couch after too many hours of lounging. Over ten years have passed and I still giggle when I re-watch episodes, though my 54-year-old father, Kevin, now suffers from vertigo.

His world started spinning in 2013, during a walk down West 12th Street in New York City, where he lived at the time. The symptom was marked first by an annoyance: a buzzing in his right ear that would not cease. Lifting his head, he saw the world flickering like a “series of Polaroid snapshots,” and he was unsure of which image was real. Each step got harder and panic set in: the street kept spinning, he couldn’t catch his breath, he assumed he was having a stroke. At the corner where 12th meets 5th Avenue, he vomited on the side of the Forbes building.

 He saw the world flickering like a “series of Polaroid snapshots.” At the emergency department of the Veterans Affairs New York Harbor Healthcare Center, my Navy vet dad waited an hour—“barely anything at the VA,” he laughs now, “they were concerned”—before a doctor assured him that his heart was fine. He was diagnosed with Benign Paroxysmal Positional Vertigo (BPPV), an inner ear disorder that causes balance problems when crystal otoliths—elements in the ear—become heavier than the endolymph fluid that flows in the head. They dislodge into the ear’s semicircular canals, which send signals to the brain that the body is moving, even though it is not.

It happens suddenly—paroxysmal—and when the head or body moves sudden—positional. The lifetime chance of getting BPPV is one in three. There are no known cause and no guidelines currently in place to prevent the condition. It arrives for some with age, while others see symptoms as the result of head trauma or inner ear infection. Doctors confirm BPPV by looking for a characteristic eye movement known as nystagmus, a kind of shaking of the eye found by turning the head to one side while looking another. Scans prove impossible: the crystals are too small.

Among the few known, the best treatment for BPPV is the Epley, a head repositioning maneuver that the doctor at the VA hospital performed on my father to no success. For lack of any other option, he spent the next few years trying the Epley over and over—10,000 by his count—and the nerves in his neck have suffered from the attempts. For 20% of people with BPPV, Epley maneuvers never work. The world keeps spinning.

In addition to spatial disorientation and balance, vertigo impairs cognition. Anxiety and depression are common, too. Attacks can last minutes or hours. “They can’t drive, they can’t take walks, and for people who are by themselves, if they fall, they don’t have people who can come and get them,” says Checli Gay, an audiology graduate student at Ohio University who also works with BPPV patients in practice. “They stop doing stuff. They’re afraid they’re going to get dizzy.”

“Truth is, when you have vertigo, life stops,” says Oliver Adunka, an ear, nose, and throat (ENT) otolaryngologist at Ohio State University.

 “Truth is, when you have vertigo, life stops,” Sort of. Instead, it turns into a medical odyssey: Finding vertigo’s true cause can be frustrating, sometimes even impossible. It’s a symptom of many things: BPPV, labyrinthitis and vestibular neuritis, secondary hydrops, perilymph fistula, or none of these; the root of vertigo could also be genetic or environmental. Some in the field describe migraine-related vertigo as “the great mimicker” for its ability to imitate other conditions.

My dad moved to California in 2014. After months of waiting he saw a new doctor, a neurologist who said he had Ménière’s disease—an also-cureless fluid abnormality in the ear that affects both hearing and balance. It makes sense: the mark of Ménière’s is ear pressure and ringing, and the tinnitus in his right ear had gotten worse over time. A brain MRI and an appointment with an ENT specialist were scheduled. Drugs to treat Ménière’s symptoms are in development. By phone my dad told me how positive the doctor had been, but he sounded exasperated.

“This guy told me it’s actually Ménière’s, which is good to know,” he says, “But then he’s like, ‘see you in four months!’ and I walk out, and the fucking room is still spinning.”

* * *

Vertigo cycles through the news every few months, pinging alerts in my custom search settings without sharing any new information. (“Vertigo isn’t just a catchy song by the band U2,” a Harvard health blog reads.) Explainers come from Fox News experts named “Dr. Manny,” or feel good segments from a local-doctor-turned-YouTube-sensation.

People looking for relief pour questions into the Internet on Reddit and in health forums. Common posts include stories about medical professionals without answers, who brushed off concerns and offered only time’s passage as treatment. “You just have to be your own advocate in the system and make sure you get where you need to go,” one person wrote.

I have found this to be true: my father and I joke that I should receive caretaker benefits for the number of medical inquiry calls I’ve made on his behalf. I have met specialists for his sanity and this story, doubling down once I learned about a potential genetic factor. I’ve raked over details of my dad’s life to pinpoint moments in time that may have caused harm. His symptoms are experienced by millions of others—at least 69 million people in the United States have suffered from vertigo at some point, and about 8 million Americans suffer from chronic balance issues regularly, according to the National Institute on Deafness and Other Communication Disorders (NIDCD). In a medically advanced world, what’s the hold up on finding its cause and some form of relief?

The author's father, in 2016.

Vertigo is nothing like cancer, which took my mother at 54. My dad will not die from dizziness. But he could crash his car when the world starts spinning, or fall down when he’s alone. Vertigo has been his first big sign of physical decline, the initial instance of his body aging in a way that’s impossible to fight.

“I think everyone gets a thing,” he says, “and maybe this is my thing.”

A talker—spins or no spins—my dad has horror stories about the condition. I’ve watched the attacks occur on flat sidewalks, inclines, and in the driver’s seat. They’ve worsened, and when his balance is thrown off, he becomes a proudly sober man walking drunk. After four years people still routinely dismiss the fatigue and strain from the symptoms.

* * *

Here’s the part where I explain how agile and able-bodied this person once was: As a party trick in my youth he’d shimmy up flagpoles, still holding a drink. He took pride in being a younger parent because he saw healthy decades ahead of us and imagined that his body would be an able, willing participant for all of his eternity. His professional life was spent at the top of a 20-foot ladder, directing the team around him with a point of the paintbrush in his hand.

The author's father as a younger man, climbing a flagpole as a party trick.

When I took on the task of investigating his vertigo, this struck me as important. As Robert M. Ghent Jr. explained in Occupational Health and Safety last June, adhesives like paint are ototoxic chemicals—poisonous to both the hearing and balance parts of the ear. Ghent is a research audiologist with Honeywell, where he develops hearing protection for those in industrial occupations; he wrote the article for safety professionals, to explain the connection between chemicals, noise, and issues of the ear to safety professionals so they could better understand how to protect employees from hydrocarbon, asphyxiant, and heavy metal exposure.

“They usually think of the hazard there being strictly respiratory or neurological,” says Ghent. Chemical exposure in other parts of the body, like the ear, is harder to detect and quantify. But the ear is a complex piece of physiology, connected to much of the body. The functions of balance and hearing utilize the same blood supply and fluid and share the same cranial nerve.

In extreme cases, Ghent explains, prolonged exposure to common industrial chemicals can have the same effect as industrial noise, causing hearing loss and vertigo. When asked what professions are at high risk, Ghent’s answer came quickly: “Oh, painting.”

My dad spent full days with latex and epoxy paints an arms-length away from his face. There was rarely ventilation. Fans and wind spread dust; windows were covered in plastic and tape (applied by yours truly during summer months). He wore minimal safety gear to prevent damage from exposure to paint fumes—”I couldn’t afford [protection],” he said—and only donned a proper respirator face mask when using a sprayer, which he did frequently.

When I told Ghent about this history and my dad’s current condition, he replied, “Well, there you go.”

American safety regulations and practices in the workplace formally began in 1936 when minimum wage, maximum hours, and safety standards were established as part of the New Deal. Safety protections made economical sense: sick workers are less productive workers. The institutional efforts to protect works has evolved since then. The Occupational Safety and Health Administration, formed in 1971, mandates that employers of a certain size who put their workers in a potentially hazardous environment need to protect them.

 “You don’t care about your safety practices when you’re trying to feed your family.” But because my dad was often running a small crew or working alone, these rules were really just suggestions. “I knew it was killing me,” he says. “Ninety-eight percent of the time there are no safety rules whatsoever. [I was] part of society that just somehow has to make enough money to pay the rent by the end of the week. You don’t care about your safety practices when you’re trying to feed your family.”

Safety gear gets in the way, and speaking out could mean losing a meal ticket, like the time he was fired for telling his crew to demand gloves while they stained a wood floor.

While some in private industries resist safety protocols, the military has embraced them, Ghent says. “They see how many veterans they have on the rolls for health services and it’s very, very costly. So they have understood much earlier than industry that prevention is way better than treatment.”

Before painting my dad spent five years in the US Navy, working on flight lines as an aviation flight technician. He was constantly exposed to noise from aircraft, and though his ears were covered, they were protected by 1980’s military-grade muffs—which I know can’t even block out the sound of my sister’s voice when she’s speaking at mid-range. The Navy tested his hearing frequently, but they weren’t looking for sensory damage from the chemicals he worked with. A hearing conservation plan employed by the Navy first mentioned concerns of exposure to ototoxic chemicals in 1998, ten years after my father returned to civilian status.

In 2014, Veterans Affairs published findings from a study that found exposure to jet fuel—a hydrocarbon chemical—affected the brain, not just the hearing and balance components of the ear. “It is possible that a large population of military personnel who are suffering from the effects of jet fuel exposure may be misidentified because they would exhibit normal hearing thresholds but harbor a ‘hidden’ brainstem dysfunction,” the VA wrote.

* * *

In the spring of 2016, a serendipitous moment of dual unemployment struck: my dad finished a job and was road-tripping a 1987 Dodge camper across the west, and I left my job in New York City.

He picked me up in the early morning from the Denver airport. In Golden, Colorado, we passed a brown sign marking the gravesite of Buffalo Bill, a white adventurer of the American west who was buried atop the aptly-named Lookout Mountain. The winding road shook my dad’s faculties, but at the start of our trip we stood motionless at the top of the great world together.

As the miles stacked, we reached old train trestles and waved to mountain goats from cliffsides in New Mexico. I screamed when the Grand Canyon came into view, he bravely stood by its edge. We found great joy in adventuring, but he remained mentally and physically tired. I thought up this essay in a laundromat after he’d suffered a full day of spins. In California’s Shasta-Trinity National Forest, near where Bigfoot is said to have been seen, my dad mused on his days to come. He dreamt aloud: maybe falling down a mountain would someday fix his vertigo.

The author's father in 2016.

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