My Dizzy Life: Balance Awareness Week, 2020

This week (20th-26th September 2020) is Balance Awareness Week. Charities such as The Ménière’s Society are running various events to raise awareness of vestibular (balance) disorders, which cause dizziness and imbalance. 

Most people have experienced a sense of instability at some point in their lives; perhaps from standing up from a sitting position too quickly, or from playing the childhood game of spinning around with your arms out wide until dizziness causes you to fall down. For people with balance disorders, the feelings of dizziness and instability are all too familiar. 

To help bring some awareness, I am sharing a glimpse into my life with balance disorders. My balance issues became more apparent 4 years ago, after experiencing a sudden hearing loss, though on reflection I suspect they began during my teenage years. Along with profound deafness in my left ear, I simultaneously gained tinnitus, sensitivity to sounds and vestibular issues.

Following my hearing loss and bouts of vertigo, constant dizziness, and instability, I have been diagnosed with two types of vestibular issues:

Ménière’s Disease: A condition of the inner ear that causes vertigo, tinnitus, ear pressure and hearing loss.

Vestibular Migraine: A type of migraine that causes vertigo, dizziness, or balance problems, with other migraine symptoms, though not always with a headache.

Due to the overlapping of symptoms from my vestibular disorders, I am often unclear as to which issues correspond to which condition. 

My Everyday

I am tired all the time. I wake up after a full night’s sleep and feel as though it’s the end of a long day; my body aches, my eyes find it difficult to focus and the room is never still. 

The effort of my brain constantly trying to maintain balance is mentally tiring. A lot of energy is needed to navigate through my days with a hearing loss and to ignore the intrusive nagging, whooshing, and ringing sounds of tinnitus—my brain is constantly being challenged.

I feel disoriented in my surroundings. My head is heavy. I am unsteady. Walking is a workout for my brain—navigating myself around other people, while simultaneously trying not to walk into them. I don’t feel in control; I’m not in my body, though I’m overly aware of every movement. 

In environments where there are lots of visual or auditory stimuli—loud noises and voices, people moving around me, patterns in the environment—I am unstable. Floor tiles arranged in geometric patterns are a struggle to process, my head fills with pressure. Stimulation overload is all around. Department stores with their bright lighting, music, expansive arrays of items, and movement of people are a perfect combination for an immediate draining of energy. Scrolling through pages on my mobile phone and computer screen cause the pressure in my ears and head to build. Headaches are usual and migraine is regular. 

My eyes won’t focus on a single point, they flick continuously back to the chosen spot. I can concentrate on one task such as walking, yet a change of direction could throw my head into dizziness—the floor rising towards me. Times of concentration are brief, sporadic.

Moments after eating, the buzzing starts. There is a tuning fork inside my head which vibrates obediently. My nerves are in overdrive.

Did I mention the tiredness?

Spikes 

Triggers are numerous—stress, stormy weather, hormone fluctuations, travel, tiredness, salty and sweet foods. Sometimes I’m unable to identify a reason for a flare-up in my symptoms.

A drop vertigo attack throws me to the ground with the force of an invisible hand pushing down on my head. I am conscious, though unable to fight. Violent spinning. Stuffy ears. Head pressure. Sweating. Racing heartbeat. Nausea. Loud ringing in my ears—the sound effect after someone shoots a gun in a film. I am defeated. 

Light-sensitivity makes my eyes hurt. The zig-zagging bright lights and blind spots of visual auras are short-lived but scary. My brain is lost in a fog during a vestibular migraine; I’m looking at my world through clouds. I feel simultaneously drunk and hungover—I’m not confident in my movements and my head is pounding.

I am disconnected from my world. Sound and light are difficult to tolerate. Speaking is complex; words are jumbled in my head and arrive slowly and clumsily to my lips. 

I’m walking on a bouncy castle, but I’m not having fun. My feet sink and spring back upwards; my legs feel unreliable and wobbly, trying to stay upright. I’m sitting still but everything around me is moving. Parked cars are in motion; I try to avoid the space where I think they are. I remember when stationary objects were still.

Emotional Impact 

Living with balance disorders has caused me a lot of frustration. My symptoms can be unpredictable and can’t always be managed—it is not possible to press a pause button on stormy weather. 

I feel alone in this. My symptoms are invisible to others. I don’t look ill, I’m skilled at faking ‘normal’. I continue to do most things that people with uncompromised balance systems can do, yet much more energy and concentration is required, and many naps. 

I worry about my condition worsening. I worry about having more vertigo attacks. I worry about losing more hearing. 

I’ve felt guilty for needing to rest. 

I am still grieving my life before the dizziness. I miss the energy I used to have. I miss silence before the tinnitus. I miss feeling well.

The more I understand my condition, the more it can be managed. I hope for more research and understanding from the medical community to help develop more management techniques and treatments.  

I now pay attention to my stress levels. I exercise when my body allows. I eat healthily. I listen to my body and am learning to be kind to myself, allowing for rest when it is needed. I appreciate days where my symptoms aren’t too aggressive and I embrace the brighter days of my dizzy life.