I've been living with Menière's Disease for two decades: But first I had to learn HOW to live with Menière's Disease

Twenty years is a long time to live with anything. Long enough to stop fighting it and start working with it instead. This is my story - from the first dizzy spell in my lounge in 2005, to reading a diagnosis on a slip of paper alone in a car park, to where I am now.

The First Signs: Ignoring the symptoms

The first time I noticed something was wrong, I was busy cleaning and rushing around the house. I stepped into my lounge, leaned slightly to the left as I walked in, and suddenly, a wave of dizziness hit me.

It was really scary. I stumbled to the settee and sat there until it eased off. I had no idea what had caused it but I brushed it off as low blood sugar as I hadn't yet eaten, and carried on with my day.

A few days later, it happened again. 

Looking back now (this was around 2005), 20 years on, my diet was poor, my life was full of stress and suppressed emotions. I wasn't taking care of myself at all. I had been a vegetarian for 13 years by this point, but I hadn't got much nutrition knowledge so my diet was basically toast, tinned soup and chocolate. With meals thrown in that I now know would not have helped at all. But more of that later.

I also spent a lot of time around loud and live music, in my 20's (and by this time I was just into my 30's) I had been to nearly 100 concerts. My partner was a guitar teacher in our home and had played in many bands over the years. So I had sat in front of many guitar amps and drum kits. That gave the reason for the tinnitus that I always had and the occasional dizziness. Little did I know then that these (for me ) were early signs of Menière's disease.

My worst major attack

Fast forward to 2012. I juggled a full-time job, Nutritional Therapy training, and running a business with my husband. One morning, I rushed into work late as usual, I was walking fast from the car park. As I approached the automatic sliding doors into my office block, I turned up the path slightly leaning to my right. As the doors opened, my world turned upside down.

Violent vertigo hit me. The worse I'd ever experienced.

The entire building seemed to spin at an uncontrollable speed. I somehow stumbled to a small settee in the foyer, trying to act normal, but I knew something was seriously wrong. I don't know how long I stayed there, I felt absolutely horrific but didn't want to draw attention to myself.

Eventually, I stumbled up the two flights of stairs to my office floor, and managed to reach my desk. Within a few minutes of sitting at my desk my stomach started to churn and so I then had to get back up and navigate my way back out of the office to the toilets.

After that I again managed to get back to my desk. My colleague (now also my best friend) offered to take me home. But I insisted that I would be fine. I wasn't fine, far from it but I struggled through the day. By the time I left to go home it had eased off enough for me to drive myself back.

Seeking a Diagnosis

Over the next few days, the dizziness stayed with me. Not in the same way but I felt constantly unsteady. So I booked an appointment with my GP. She dismissed my symptoms, said it would just go off eventually and packed me off. A couple of days later after feeling no better I went back to see a different doctor who finally examined my ears and diagnosed an ear infection. The doctor prescribed antibiotics and I hoped for the best.

When my symptoms didn’t improve, I was referred to an Ear Specialist (ENT). That appointment didn't go well, he barely looked at me, quickly vacuumed out some earwax, and handed me a printout.

When I reached my car, I read the paper: Menière's Disease. 

That's how I discovered what was wrong.

He said before I left his clinic, that I would be receiving a letter to be sent for tests. I read online about the tests that are done to diagnose Menière's but because I felt so ill, I just couldn't face it. So I discharged myself.

Living with Menière's Disease

Over the years, I’ve had multiple attacks, each leaving me feeling exhausted and disoriented for weeks. Social events became difficult, and I had to carefully manage my energy levels. This meant I missed out on days out, theatre visits and meals. Being in a big group of people at a restaurant was not only stressful as I couldn't hear all the conversation but also exhausting from trying to appear 'normal'.

My daily life was full of stress, suppressed emotions, sleep issues, and a poor diet which made my symptoms worse. I should've made lots of lifestyle changes. But due to the coldness of my original diagnosis I was in denial with what I was actually dealing with. Although over the next few years when symptoms did increase, I would often think, do I have Menière's Disease?

In 2017 I decided to see another consultant and asked my GP to refer me. Thankfully, I was referred to a compassionate doctor who confirmed my diagnosis without putting me through invasive tests. He was so lovely to me, I could've hugged him.

He advised me which foods to avoid with Menière's Disease:

Cheese, chocolate, citrus fruits, caffeine, and excessive salt and sugar.

While the diagnosis didn’t change my reality, it helped me understand why I always felt unwell.

Managing symptoms & moving forward

Today, I track my symptoms closely to identify triggers and patterns. I wear an Apple Watch for fall detection, as drop attacks are now a risk.

I've been in a different relationship for the past 18 years (married for 15 years) and he has helped me to change my life to limit stress as much as possible. He understands my condition and is the only person that has ever seen me go through the violence of these vertigo attacks. I no longer suppress emotions and have followed the dietary advice to the book.

Though I haven’t had a full vertigo attack in a few years, I still experience daily dizzy spells, unsteadiness and fatigue. The unpredictability of the condition has given me anxiety, so if my symptoms feel worse at any point, instantly it brings on anxious feelings. But I've dealt with it for 20 years now so it's just become a normal part of my life.

By tracking my symptoms, building a life with less stress, and following the dietary advice properly, I've found a way to live that actually works for me. Not cured. Not fixed. But genuinely okay - most days.

Read about my experience of living with degenerative disc disease.

Health Disclaimer

This article is for informational purposes only and based on personal experience. It does not replace medical advice. Always consult a qualified healthcare professional before making changes to your diet, medications, treatment plan or start any kind of exercise regime.

---

Hi, I'm Sally - a Nutritional Therapist and chronic illness blogger who has been living with Menière's disease, TMJ Disorder and Degenerative Disc Disease for over twenty years. I write about the real experience of managing these conditions day to day, blending personal insight with nutritional and lifestyle knowledge. I hope something here helps you feel a little less alone.