“I experience all three of the classic symptoms,” said Mills. “The low-frequency hearing loss, the tinnitus, and the vertigo. Not always at the same time, but I do get all of them.”
Ryan has worked as the Regional Sales Manager for e3 Gordon Stowe’s Dayton office for the past four years, helping equip hearing care professionals across Ohio, West Virginia, and Kentucky with premier hearing and balance instruments to better treat their patients. The same equipment used to diagnose and treat people suffering from the condition he lives with every day.
Prior to that, he spent 15 years as an audiologist, working with the US Army and Department of Veteran Affairs for the greater majority of that time and earning a doctorate degree in audiology from the University of Cincinnati in 2013. However, even having the extensive professional background and education in the field of audiology couldn’t prepare him for his Meniere’s disease diagnosis.
“It came as a big surprise,” said Mills with a soft chuckle. “It was double shock to me because most Meniere’s cases are unilateral, but I actually have symptoms in both ears. Not always at the same time; sometimes it will be the left and sometimes the right. It’s a completely bizarre situation. All I could think was ‘How did I get to be so unlucky?’”
A fitting question to ask seeing that Meniere’s disease, even in its more common unilateral form, is a relatively rare disorder. According to Massachusetts Eye and Ear, an international center for treatment, there are between 600,000 and 750,000 people with Meniere’s disease in the United States. Out of that group, only 15 to 40 percent experience symptoms in both ears.
In addition to being rare, Meniere’s disease is difficult to trace back to a single cause. Timothy C. Hain, MD, a neurologist at Chicago Dizziness and Hearing and professor at Northwestern University Medical School, cited a variety of causes in an essay published on Dizziness-and-balance.com. Among them are viruses, genetic predisposition, allergies, and trauma. Because no single cause has been identified, it is believed that the disease is brought on by a combination of these factors. For Mills, the source of his case is still a mystery.
“They haven’t been able to determine a cause, but my mother does have it, so if there is any hereditary link, it obviously was passed on to me,” said Mills. “However, my recollection of Meniere’s is that any kind of hereditary indication is minimal and not very conclusive.”
Mills was actually the one who discovered his mother’s Meniere’s disease. While he was in the process of obtaining his master’s of audiology from Ohio University, he spotted some telltale symptoms that she was displaying.
“I noticed that she seemed to be having a lot of hearing difficulty when I came home to visit, so I suggested she get it checked out,” said Mills. “One day I was on the phone with her and she said, ‘I’ve been reading about this Meniere’s disease. What are some of the other symptoms besides hearing loss and tinnitus?’ And I said vertigo episodes, and she replied that she had been experiencing them. That’s when it became clear that she had a problem that at least resembled Meniere’s disease. I had her come to Ohio University, where I was a student, so I could check her hearing, and sure enough, it was a classic Meniere’s audiogram.”
Communication Breakdown
A condition infamous for its unpredictability, Meniere’s disease can strike at any time. According to the American Hearing Research Foundation, episodes can occur as frequently as several times in one week. There are even cases where symptoms may come months or even years apart. Intensity of symptoms can also range from manageable to unbearable.
Because of this, those afflicted struggle in their personal lives. Dr. Thomas Tedeschi, chief audiology officer at Miracle Ear, says that “people often experience anxiety and depression due to the stressful, disabling nature of the disease,” and recommends seeking help from a qualified mental health professional if that’s the case.
“I think I’ve done a reasonable job dealing with it, but there are occasions where I have to change plans at the last minute because I’m dizzy,” said Mills. “It certainly does get to be inconvenient.”
Unfortunately for many Meniere’s sufferers, frustrations don’t end there. Because most of the population has never experienced a Meniere’s episode, they inadvertently neglect the needs of those with the condition. Even friends and family will forget, which is especially vexing when symptoms strike.
Mills experiences this daily. Prior to developing the condition, he would treat patients whom would complain about hearing loss brought on by Meniere’s, often citing difficulties hearing their kids, spouse, and background noise. Before facing the same issues, he recalls explaining to patients that in addition to hearing aids, they need to ask people to come into the same room as them, look at them, and speak clearly to maximize communication. Now that he’s on the other end of the spectrum, he’s found that it’s not as easy as it seems.
“I’m married to an audiologist who knows these things, and still she’ll walk into the other room and ask me a question,” said Mills. “Same with my kids. I’ll tell them ‘I’m having trouble hearing today, so try to enunciate and look at me when you need to talk to me,’ and it just doesn’t sink in. No matter how much you try to train the people around you to use good communication habits, even someone as knowledgeable as my wife, they still fall into their poor habits and it’s incredibly frustrating.”
Opportunities and Barriers at Work
Photographed: Mills with the e3 Gordon Stowe Dayton team.
In addition to affecting his personal life, Mills’ Meniere’s disease symptoms have become an obstacle at work, especially since his job requires him to travel hundreds of miles every week. On multiple occasions, he’s had to reschedule appointments with customers because he was too dizzy to safely drive.
Fortunately for him, many of his customers work with patients whom have Meniere’s disease, so they understand when he needs to cancel because of an episode. They’ll even ask him about the severity of his symptoms or how he’s feeling when they see him. Be that as it may, it’s still always weighing on him in the back of his mind.
“Just last week, I was having hearing loss and tinnitus, and I knew the vertigo was coming at some point, so I was stressing about trying to get through the work week without having the vertigo,” said Mills. “Sure enough, 10 o’clock Friday night is when it hit, so I just squeezed the week in.”
However, while the stress of another attack looming is always there, Mills makes the best of his situation. Whenever meeting with his audiologist clients, he finds his Meniere’s disease to be a good talking point; not only because they understand condition from years of studying and treating it, but also because he feels it gives him an added level of credibility.
“Whenever I’m demoing or installing any type of vestibular equipment, I tend to mention at least once during the conversation that I have Meniere’s disease,” said Mills. “It kind of gives me a little edge as far as credibility and so forth. I can’t think of a specific example recently, but I do try to work it into the conversation if it’s about vestibular equipment.”
Hope in Suffering
No cure exists for Meniere’s disease. However, according to the National Institute on Deafness and Other Communication Disorders (NIDCD), there are a handful of treatments that can help alleviate symptoms. Medications like diazepam, meclizine, glycopyrrolate, and lorazepam can help relive dizziness and shorten episodes. Likewise, injecting antibiotic gentamicin into the middle ear helps control vertigo, but significantly raises the risk of hearing loss. Other options include surgery, dietary changes, and pressure pulse treatment.
As with most people who struggle with Meniere’s disease, Mills receives professional help from an otologist a few times per year. Unfortunately, he hasn’t found much solace in his own treatment program.
“He’s recommended a few things, like steroid treatment,” said Mills. “When I’m having an episode, I’ll take the steroids, but they don’t seem to reduce the episode or shorten it. I don’t want to take steroids unnecessarily, so I tend to not do that anymore. Some of these treatments I’ve known for years and are kind of standard, but I’ve always questioned them. And it seems like they aren’t really improving my situation, so I don’t always stick to them.”
Regardless, he still sees the value in sticking with the program.
“But it is good to still follow up with him just to keep things well documented. If things worsen over time, then we have some benchmarks to go off of.”
Living with Meniere’s disease the past three years has drastically changed Mills’ perception of the disorder. In his mind, experiencing an episode firsthand and feeling the dread of knowing that one can strike at any time is much more educational than reading a textbook.
He recalls treating Meniere’s patients in his clinical days and growing tired of hearing the same complaints over and over. Now that he has a firsthand perspective on what they were going through, he has a new mindset.
“I think it’s a lot different to experience something than to learn about it in textbooks and relay it to everyone else,” said Mills. “Even when I was a clinician, I would see someone who had vertigo and, it’s not that I didn’t feel empathetic for them, but I always wondered if it was really as bad as they were making it out to be. When you actually experience it, you realize that it really is that bad.”
Regarding how hearing care professionals can better educate themselves and others to be more cognizant of a Meniere’s sufferers needs, Mills feels the only way is to live with the disease. You can know all of the symptoms and imagine how they feel, but you don’t really understand how crippling they can be until you’re too dizzy to safely drive your car or you can’t hear what your significant other is saying in the next room or the incessant roaring in your ears is preventing you from getting a good night’s sleep.
“I think that having the experience yourself is the only way,” said Mills. “So maybe putting in a good set of earplugs and wearing them for a week could help.”
Even through hardship, he still maintains a good sense of humor.