Navigating the Onset: My Meniere’s Journey
It was a seemingly ordinary August afternoon in 2020 when I first noticed something was off with my hearing. As I casually mentioned to my husband, ‘I think my right ear feels a bit muffled.’ It was as if I had my hands pressed against my ears, and to add to the confusion, there was this persistent high-pitched ringing that seemed to emerge as soon as my little tornado of an 8-month-old, Millie, finally drifted off for her afternoon nap. Standing there in the kitchen, I couldn’t shake off the thought that maybe I was coming down with a cold, brewing an ear infection, or simply enduring the aftermath of being exposed to my little one’s loud antics.
A Storm Unfolds
As the day unfolded, the ringing intensified, and my hearing became increasingly fuzzy. I convinced myself it was probably some form of ear infection, all while lounging in the living room, half-listening to the latest updates on COVID-19 and Melbourne’s lockdown rules. The rest of the day was a haze of persistent ringing and muffled hearing, prompting me to call it a night early, hoping a good night’s sleep might work its magic.
But when I woke up the next morning, the ringing persisted, along with the muffled hearing. I tried not to dwell on it and carried on with my day as usual. It wasn’t until the afternoon, out of nowhere, that my hearing suddenly cleared up, and the ringing ceased. ‘My hearing’s back!’ I exclaimed to my husband. But before I could fully celebrate, a wave of nausea and vertigo hit me like a ton of bricks.
Thankfully, my husband was home from work that day and could take over looking after Millie while I grappled with the fallout. The rest of the afternoon was a blur as I struggled to keep my balance. Clutching onto a makeshift vomit bag, I made my way to bed, where I lay still, hoping the world would stop spinning. Eventually, I drifted off to sleep, and when I woke up, it was dark. Slowly sitting up, I realized the dizziness had subsided, but I still felt unsteady, as if I were standing on a boat. And despite having just slept the whole afternoon, I felt utterly drained.
And so began my journey with Meniere’s Disease. For me, these attacks typically start with muffled or diminished hearing and ringing in one ear, followed by bouts of dizziness, vertigo, and nausea. The only way to weather the storm is to stay perfectly still and ride it out. But even after the attack passes, I’m left feeling foggy-headed and exhausted for days on end.
Seeking Answers
As a nurse, several potential diagnoses crossed my mind. Initially, I considered Benign Paroxysmal Positional Vertigo (BPPV) or Meniere’s. Despite a hunch leaning toward Meniere’s, I was hesitant to leap to conclusions. Consulting my GP, I received a diagnosis of BPPV and was advised to perform the Epley maneuver at home. However, as the attacks persisted and intensified in frequency, it became evident that further investigation was warranted.
Amidst a labyrinth of appointments, tests, and scans, I encountered numerous obstacles in securing a neurologist consultation in the public healthcare system. Three months elapsed before I finally met with a neurologist, only to face additional delays in the diagnostic process. It wasn’t until four month after my initial attack that I received a definitive diagnosis of Meniere’s Disease and Vestibular Migraine.
Gratitude for Expertise
I want to express my heartfelt gratitude to a remarkable neurologist I encountered at the Royal Victorian Eye and Ear Hospital. With a PhD in Meniere’s Disease, she brought a level of expertise that truly stood out. In contrast to other practitioners who offered standard advice on medication and low-sodium diets, she went above and beyond. Taking a comprehensive approach, she explained in detail the disease process, medication management, and lifestyle adjustments. Her thorough understanding and personalized recommendations provided me with much-needed reassurance during a period of uncertainty.
Empowering Treatment
Armed with prescriptions for Betahistine, Hydrochlorothiazide, and Flunarazine, I embarked on a regimen of medication and lifestyle adjustments under the guidance of a neurologist specializing in Meniere’s. Emphasizing the importance of a low-sodium diet, reduced alcohol and caffeine consumption, regular exercise, adequate rest, and stress management, she outlined a holistic approach to managing Meniere’s and mitigating the occurrence of vestibular migraines.
Gradually, the combination of medication and lifestyle modifications brought relief from vertigo, dizziness, and nausea. However, adhering to a low-sodium diet presented the greatest challenge. Over time, I honed my dietary habits, diligently monitoring sodium intake and prioritizing nutritious, low-sodium options.
Whilst on medication, I began practicing making changes to my lifestyle. After taking medication for 3 months without having a single attack, my neurologist had recommended I reduce my medications slowly over the next 3 months. In that time, I had managed to keep my sodium intake to around 1 to 1.5g daily, spreading the sodium intake out evenly throughout the day to prevent fluctuations of sodium in the body. I gave up alcohol entirely. Gave up caffeinated drinks, except an occasional chocolate. I returned to the gym, started yoga, and aimed for 9 hours of sleep a day. I had identified the biggest trigger for my Meniere’s as salt intake.
Embracing Change
After three months of consistent medication without a single attack, my neurologist suggested gradually reducing my dosage over the next three months. During this period, I meticulously maintained a low-sodium diet, limiting intake to 1-1.5g per day, and eliminated alcohol and caffeinated beverages from my routine. Additionally, I prioritized exercise, incorporating gym sessions and yoga into my schedule, and aimed for a solid 9 hours of sleep each night. Identifying salt intake as a primary trigger for my Meniere’s, I made these lifestyle adjustments with determination.
Despite occasional bouts of dizziness, I’m pleased to report that I haven’t experienced any full-blown Meniere’s or vestibular migraine attacks since tapering off medication. I’ve regained control over my health and effectively managed the challenges posed by Meniere’s Disease.