Advertisement

'It wasn't anxiety - I had Meniere's Disease'

Writer Erin Kelly found herself victim of both extreme anxiety and a rare inner ear disorder - Clara Molden for The Telegraph
Writer Erin Kelly found herself victim of both extreme anxiety and a rare inner ear disorder - Clara Molden for The Telegraph

I have never been a serene person. But I always thought of myself as a coper: not someone who would buckle easily under pressure. Turns out, you don’t always know yourself.

It all started with physical illness. My second pregnancy was blighted by dizziness and vomiting that I dismissed as morning sickness. But they  worsened after my daughter Sadie was born; terrifying vertigo turned the familiar planes of my home into a fairground attraction where walls tilted and floors became turntables. My GP put it down to exhaustion, overriding my husband Michael’s conviction that these symptoms went beyond new-mother tiredness. I, meanwhile, was in denial. My eldest daughter, Marnie was only five and her baby sister just a few months old. Plus, I had a book to write. I could not be ill.  

It was only when I lost my balance in the night and split my lip on a door frame, that I finally sought help, from a different GP. The NHS tests for illnesses in order of urgency, so I was referred to a neurologist who sent me for an MRI scan to ‘rule out a brain tumour or anything else life-threatening’. 

Doctors feared Erin's symptoms could indicate a brain tumour - Credit:  MachineHeadz
Doctors feared Erin's symptoms could indicate a brain tumour Credit: MachineHeadz

Those words finally pierced my denial and I staggered out of the surgery feeling weak and powerless. This was weapons-grade stress, so intense that it had gone straight for my body. My legs started to give way and I had a panic attack right there in the street. Somehow, I made it home, went to bed and stayed there for five days, only sitting up to breastfeed my daughter. I sucked my thumb for the first time in 35 years and stopped eating, unable to get the fork past my lips. I lost half a stone in a week. 

Within a fortnight, I had gone from a confident journalist and family breadwinner, to someone scared to do the school run without her husband. I could barely let him out of my sight.

The GP prescribed Valium, beta blockers and the anti-vertigo medication Stemetil - a small dose of the drug they use to sedate people when they are sectioned. It took the edge off the dizziness but drove another wedge between my anxious state and my rational, capable self who now felt as remote as a balloon floating away in the sky. 

At a glance: Anxiety

I didn’t qualify for acute NHS care because I wasn’t suicidal. I kept telling them the same thing: I am the opposite of that. I want my beautiful life back. But with an eight-week wait for counselling, I went private. Through tears I told my psychotherapist about the vertigo, the vomiting, the way people crossed the road to avoid the ‘drunk’. 

At the end of that first session, she introduced me to the then newly-fashionable concept of mindfulness (“some of us have been doing this for years,” she said drily). In stockinged feet, I had to cross the consulting room, thinking only of my foot in contact with the floor: heel, instep, ball, toes.

The spinning in my head subsided. When I stopped, the panic resumed but those few seconds of respite had proved her point. If my symptoms were not psychosomatic, they would not have subsided. “You can’t be anxious when you’re living in the moment,” she explained. 

I was still having psychotherapy when the doctors at University College Hospital diagnosed me with Ménière’s disease, a degenerative disorder of the inner ear, which could leave me deaf and had already permanently damaged my balance. It affects around one in around 1,000 people, striking at random, often in early middle age and is thought to be slightly common in women. 

Nobody knows what causes it and there is no cure. Medication is of limited long-term help. Surgery can cure the vertigo, but takes your hearing with it.

Ménière’s disease | The facts

Terrified, I took to stalking internet forums, where only the truly desperate post: people whose tinnitus has driven them to suicide attempts. Others reported agoraphobia, deafness and depression

The symptoms of Ménière’s may vary but the pathology is always the same: mental torture manifesting in physical panic-like attacks. The constant fear of collapse is in itself a trigger. If you’ve never known loss of control over your body you have no idea how frightening it is. 

It was my psychotherapist who taught me to recognise the difference between a real Ménière’s attack - which no amount of mindfulness can override - and its panic attack imposter. The true version feels like being strapped to a waltzer with the norovirus. All I can do is lie down - even if on the pavement - and wait for it to pass. If mindful breathing gives even a second’s respite, it is anxiety. 

Erin has had to learn to distinguish between Meniere's attacks and panic attacks, which have similar symptoms
Erin has had to learn to distinguish between Meniere's attacks and panic attacks, which have similar symptoms

Back then, I could not believe that acceptance would ever come - but slowly, it has. A big part of that process was putting it all down in a book. In my novel, He Said/She Said, the narrator Laura suffers from an anxiety disorder. Writing her panic scenes was therapeutic, even on the days when the dizziness was so acute that scrolling through a Word document was physically nauseating.

Three-and-a-bit years on from that breakdown outside my GP’s surgery, I’m in remission. I’ve had to change my lifestyle, slashing salt, caffeine and alcohol from my diet (the ups and downs of coffee and wine are a surefire trigger for me, others find that greasy food sets them off). 

Erin has found that certain foods trigger her condition - Credit: Elia Najem / Alamy 
Erin has found that certain foods trigger her condition Credit: Elia Najem / Alamy

My balance remains appalling – this morning I fell over putting my tights on – tinnitus is a constant irritant and it breaks my heart not to hear my daughters, now eight and four, cry for me in the night. Fortunately they have never seen me in the throes of an attack but they know how to call 999 if they need to. The violent Ménière’s could strike again tomorrow or I might have another decade without them. There are no guarantees - I could live like a nun and still be laid low. 

I wish I could say that I have beaten my anxiety, but the truth is I am in control of it today, this morning, this minute. God knows there’s enough to worry about in these unstable times but tiny things trigger anxiety now. Michael, who has been my rock throughout, and I take turns to lie-in at the weekends and in those early hours of Saturday morning when I’m in sole charge of the girls, my pulse skips until he gets up. 

"I wish I could say that I have beaten my anxiety, but the truth is I am in control of it today, this morning, this minute" - Credit:  Clara Molden
"I wish I could say that I have beaten my anxiety, but the truth is I am in control of it today, this morning, this minute" Credit: Clara Molden

There is a line in my novel when Laura looks at her brother-in-law, who is in a twelve-step programme, and envies those, like him, who can simply dry out in rehab. “With anxiety, you carry an endless supply,” she says. 

That supply is in me now, ready to bubble up at the slightest provocation.

He Said/She Said by Erin Kelly is published by Hodder & Stoughton (£12.99). To order your copy for £10.99 plus p&p call 0844 871 1514 or visit books.telegraph.co.uk

 

Register Log in commenting policy