How Ménière's Led Me to a Master’s

By Anthony M. Costello

Ménière's disease initially presented itself to me 20 years ago in a violent and unfortunate manner. I was 16 attending a New England boarding school when I experienced a vestibular (balance) episode, and it changed my health and life forever.

I remember vividly the vertigo that, without warning, controlled me. I remember the incredible pressure and fullness in my ears and the overwhelming sense of nausea. Realizing I could not stand I sought refuge in my bed, where the sensation of spinning intensified and I vomited profusely.

The school staff could only assume I was intoxicated and took disciplinary action. As I could not yet explain or understand that my behavior was caused by Ménière's disease, I had little recourse to justice. Faced by more unfair treatment, I left the school at the end of the academic year.

For the remainder of high school, I continued to struggle with bouts of vertigo, dizziness, and imbalance. These symptoms impacted my athletic performance, my ability to concentrate on my schoolwork, and my general quality of life. It was a difficult and confusing time as I appeared fine on the outside but I was internally battling a miserable existence that I could not fully understand or control. That paradox has since defined my life.

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When I received a formal diagnosis, my thoughts, priorities, and routines obsessively revolved around managing my wellness. This new mindset made it difficult to relate to the life I once had or to the lives of those around me. I made great efforts to hide my symptoms and protect loved ones from the negative emotional and physical effects of my disease. I made excuses to avoid social events just because of my illness.

Ménière's disease has repeatedly left me in states of hopeless despair. While it can be perceived as “strong” to persevere through one’s condition independently, I have learned this only leads to more isolation. Ménière's takes so much from its sufferers; it attacks their bodies, tests their spirits, and consumes their thoughts. This is why it is so important to reach out, be honest, and bring others into your world that you trust while you are living with Ménière's. Otherwise, you deprive yourself of not only your health but the relationships you deserve.

The etiology of Ménière's disease remains scientifically disputed and I do not claim to have the answer. But I do know the condition does not respond well to stress. I’ve spent every day of my life carefully crafting my decisions and actions based on how my Ménière's may react. In the process, I’ve come to master handling and mitigating stress. In fact, at 30 I went back to school for a master’s in psychotherapy in part to study stress and the human mind. I now licensed psychotherapist, a career change inspired by my conversations with newly diagnosed Ménière's patients in the waiting room of my ear, nose, and throat doctor’s office.

I have been fortunate to have had periods of relative remission with reduced vertigo. But there is a misconception that Ménière's just comes and goes, allowing the sufferer to return to normalcy in the interim. In reality, part of it is always there, be it the tinnitus, the difficulty hearing people in a crowded room, or the feeling the floor will start moving. There is always the uncertainty of what tomorrow will bring.

Using mindfulness—a meditation technique that helps one maintain in the present without judgment—has been helpful in calming my anxiety. Mindfulness is especially useful when my tinnitus feels overwhelming, and I sometimes I combine the practice with music, a white noise machine, or masking using a hearing aid.

I try to live my life in a manner in which Ménière's never wins. This disease will bring me to my knees—both literally and figuratively—but I just keep getting up. You can’t think your way out of this disease and spending all your time in a web of negative thoughts can be as toxic to your mind as Ménière's is to your inner ears. In my hopelessness, I try to stop my mind from plunging into the abyss and use every tool I can—making plans see friends and family, finding glimpses of joy in the midst of darkness, or being physically active. You have to retain some control when you feel like you have none.

The only gift that Ménière's has given me is a level of introspection and awareness that I could not have attained in 10 lifetimes. It has stripped me down to my core and forced me to explore what is truly important and made me a better person. I don’t know who I would be without this disease, but I’m positive that person could not fathom the joy or gratitude I find in a moment of health.

Anthony M. Costello, LMFT, lives in Byfield, Massachusetts with his wife, daughter, and 2 dogs. He has a private practice and specializes in helping others with chronic illness. For more, see www.costellopsychotherapy.com.

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My Cautious Gratitude

By Lauren McGrath

Clockwise from left: Heather, her daughter, her husband, and son.

Heather Mills never imagined her early adulthood would be interrupted by Ménière's disease, a chronic hearing and balance disorder without a cure. She was diagnosed at 21—just within the typical 20-to-50-year-old range of onset—after a slew of tests and follow-up visits with a specialist at the University of Minnesota.

Heather’s symptoms initially included a unilateral (in one ear) mild low-frequency hearing loss, tinnitus, and some ear pressure and pain. Within a few years, her hearing loss became bilateral and worsened from moderate to severe. She was regularly distressed by intense ear pressure, struggled with her balance, and experienced occasional bouts of vertigo. As Heather learned, Ménière's affects each patient differently. She considered herself fortunate not to face drop attacks (instances of falling to the ground without losing consciousness), one of the most terrifying symptoms associated with Ménière's disease.

Despite its prevalence Heather family, hearing loss—once her most debilitating Ménière's symptom—came as a surprise. Her father has lived with a unilateral hearing loss since childhood, while her mother and maternal grandmother both developed high-frequency sensorineural hearing loss in their late 40s. “It never occurred to me that it may one day affect me, too,” reflects Heather, who can recall her ability to hear whispers across her high school classrooms.

Though she followed her doctor’s directions to take diuretics and maintain a low-salt diet for her vestibular symptoms, Heather chose not to purchase hearing aids. Lacking amplification, Heather faced difficulty in her job as a legal project specialist, which required frequent verbal interaction with clients, lawyers, and vendors both on the phone and in person. She found herself increasingly dependent on a close friend and colleague who truly served as her ears by repeating information for her during and after meetings.

Heather’s untreated hearing loss, combined with her constant fear of a sudden vertigo attack, fueled feelings of isolation. Unable to participate in conversations with friends, Heather stopped receiving invites to social outings. Challenges with work and friends began to affect Heather’s mental health. “I became depressed, lonely, and developed anxiety because of two unknowns: not knowing when my vertigo would strike again, and wondering how I’d continue to work to support my family.”

Heather noticed a sharp decline in her job performance when her helpful coworker—her ears—left the law firm. Part of Heather’s role required instructing staff on new software, and she was humiliated to find out that her trainees’ questions went unanswered because they’d not been heard. “This is when I began to lose confidence in myself,” Heather remembers.

Heather realized she had to address her hearing loss. In line with Hearing Health Foundation (HHF)’s findings in a 2017 survey of more than 2300 participants, cost is by far the largest barrier to a hearing aid purchase. Heather delayed taking action for so many years—11 to be exact—because her insurance provided no hearing healthcare coverage.

“All I can say now is I wish I had gotten hearing aids sooner!” exclaims Heather, who, with newfound confidence, no longer struggles in her daily professional communications and social life. Prior to pursuing treatment, her conversations had soured quickly when she constantly had to ask other parties to speak up, repeat themselves, or remind them of her hearing loss. Most painfully, communication without hearing aids often left Heather dismissed by a “nevermind” when she requested repetition. With her new devices, Heather felt her confidence restored.

Now in remission, Heather considers her life happy and her health stable. Hearing aids have somewhat alleviated her tinnitus, her ear pressure has subsided, and the vertigo spells are very rare. She’s sought treatment for her anxiety and depression. Heather credits her husband, Billy, with whom she has two young children, for his support during her more difficult years. Engaging in online Ménière's support groups has been a beneficial coping tool.

Heather is cautiously grateful for her current health, knowing the unpredictability of Ménière's could alter her circumstances at any time. She hopes for scientific advancements in Ménière's research that will one day uncover the causes, more reliable diagnostic procedures, and a cure.

Heather lives in Minnesota with her husband and children. She is a participant in HHF’s Faces of Hearing Loss campaign.

Sudden Hearing Loss Is a Medical Emergency

By Donna Rohwer

Mondays are always bad, right? I awoke deaf in my left ear—completely deaf. I asked my husband if he thought it was anything to worry about and he said, “Not yet.” I thought the same and appreciated the confirmation. We didn’t know then that sudden hearing loss is a medical emergency.

Sudden Sensorineural Hearing Loss (SSHL)

Damage to the inner ear, the cochlea, or related nerve pathways cause SSHL. A loss of 30 decibels or more in three consecutive frequencies in one or both ears within several days is considered SSHL. Immediate treatment can make partial or total recovery more likely. Unfortunately, many medical professionals— from emergency room to waiting room—don’t recognize SSHL or know how to treat it. As a result, many patients lose the opportunity for recovery because they don’t get the right treatment within the critical time. In my case, I received treatment within a week—it wasn’t optimal, but better than many. I had no significant recovery.  

SSHL Is LOUD, Isolating, and Devastating

The shocking thing to SSHL patients is how LOUD everything becomes. Sounds distort and blend together, sound direction is lost, and every sound seems magnified. The tinnitus is sudden and loud, with whooshing, popping, and other sounds. The tinnitus often worsens with activity or background noise, and goes long into the night. Some people don’t feel well, see well, sleep well, or balance well. SSHL strains relationships and many people simply stop participating in activities. I felt as if I had lost my life.  

SSHL Can Be Life-Threatening

I consoled myself at first that my condition wasn’t life-threatening. Within weeks, however, I no longer wanted to go on living. I later learned that many people respond this way. Physicians recognize the psychological impact when someone loses a limb. Losing the sense of hearing, suddenly, is not dissimilar. I didn’t know how to live with SSHL, or where to turn for support. I felt abandoned until I received the mental health support I urgently needed.

Alone at the Table

I have slowly reclaimed my life through the support of family, friends, and several Facebook groups. I also have used a cognitive therapy course for tinnitus, antidepressants (briefly), and months of working through the process. But there are still moments. My passion is recreational poker. I recently played with a mixed group, some with typical hearing, some with hearing loss. The hearing people were talking, but the background noise kept me from understanding them, and I don’t know ASL. I felt alone at the table—caught somewhere between the hearing world and the deaf world.

What Do We, as SSHL Patients, Want?

We want non-ENT medical professionals to learn about SSHL and treat it as a medical emergency. We want ENT doctors to recognize the psychological aspects of SSHL and refer us to appropriate resources. We want hearing loss advocates to see that SSHL has unique challenges different from other kinds of hearing loss. Lastly, we want a cure.

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