Charlotte Hyde: More people should be aware of vestibular disorders

In late September, there was Balance Awareness Week 2021.

Originally set up by the Vestibular Disorders Association (VeDA) in 1997, it hopes “to shine a light on invisible balance disorders”.

In the UK, the Ménière’s Society – the UK’s leading charity for people with vestibular (inner ear) disorders causing dizziness and imbalance – lead the way in celebrating Balance Awareness Week. 

What is a vestibular disorder? 

Our vestibular system is a part of the body’s balance system. When a dysfunction in this system occurs, it can cause dizziness and vertigo.

Dysfunctions can be because of fluid building up in your inner ear, ear infections/inflammation, nerve damage within the vestibular system, pressure changes, or small bits of calcium moving within the labyrinth in the inner ear.  

It’s important to know the difference between dizziness and vertigo.

VeDA describes dizziness as “a sensation of light-headedness, faintness, or unsteadiness”. Dizziness feels like you’re moving out of sync with the rest of the world.

I must watch my feet closely to make sure I’m putting one foot in front of the other. I sometimes use walls, chairs, and shelves for support – particularly during severe episodes.

Getting from A to B feels like a mammoth task, and every step feels like it’s taking three times as long. While trying to maintain the balance I do have, I had to battle my head feeling woozy and heavy. 

VeDA describes vertigo as “the perception of movement or whirling – either of the self or surrounding objects.”.

Vertigo is distinct from dizziness because it is a rotational sensation.

I haven’t experienced vertigo in a while, but when I did it was usually for about a minute at a time. My eyes would flicker, and the room would spin. I usually had to sit down quickly or find a wall to lean up against until the feeling passed. 

Nausea, tinnitus, derealisation, headache, and brain fog are some other symptoms I typically experience. However, this is by no means an exhaustive list of all vestibular symptoms. VeDA provides a fabulous glossary of general terms here that helps people accurately describe their experience. 

My story

On a Sunday in October 2018, I arrived at work feeling fine. An hour later, I began to feel dizzy and nauseous. I felt like I was walking on clouds, my head was woozy, and my ears were ringing. My hearing also got worse.

After the second hour, my manager sent me home. I went straight to the walk-in centre in town and the doctor I saw diagnosed me with labyrinthitis – an inner ear infection. This marked the start of a two-week period I now affectionately call “Bad Luck Fortnight”. 

I was in my second year of university, so getting myself to and from my lectures was a challenge. I had a twenty-minute walk from my uni house to campus, which proved difficult.

I remember feeling so nauseous in the mornings that I couldn’t eat my breakfast, so I’d go to my 9am lectures on an empty stomach. I’d have to wait for my anti-nausea drugs to kick in before eating. 

Things were going relatively okay until the Thursday night. At about midnight, I was taking a mug to the kitchen when I fell down the last few stairs and badly sprained my ankle. My housemate and I were in A+E until 4am. It truly was a great start to the year. 

After a few more mishaps, Bad Luck Fortnight came to an end. I began to feel better, my ankle started to heal, and I was on the other side. I bought myself a fabulous rainbow coat to commemorate the end of such an unusual time. 

I can’t pinpoint the exact time the dizziness started again, but it was sometime after Christmas. I initially assumed it was another ear infection, but flare ups became more frequent. It suddenly started to sink in that my symptoms were becoming chronic.

By the summer of 2019, I felt dizzy pretty much every day. I was back home at this point, so I had to become a temporary patient at the GP at home. I saw three different doctors and all of them had a different opinion. I was back at square one by the time I moved back to university for third year. 

Luckily the frequency of flare ups started to lessen. I was still having issues but chasing a referral to hospital was pointless while I was between locations all the time. My plan was to wait until my degree finished and I knew where I was staying permanently. 

Then COVID happened. 

I moved home, finished my degree in my childhood bedroom and waited. I got my referral in February of this year after my yearly audiology appointment. I’m now attending hospital appointments and I hope to have a diagnosis soon. 

The world is difficult to navigate when you feel like you’re walking on clouds, or your legs feel like jelly.

Bright lights in shops and traffic lights can be disorientating. A change in air pressure can set me off.

It’s frustrating when people aren’t understanding or supportive. Everything is happening inside my head, and I find it difficult to communicate exactly how I feel in the moment. 

I hardly see vestibular disorders recognised in mainstream media. All on the Board included Balance Awareness Week on one of their boards last week and I teared up at the recognition.

Through weeks such as Balance Awareness Week and wonderful accounts like @thedizzy.channel on Instagram, I hope more people become aware of vestibular disorders.