Ménière’s disease sufferer: getting my life back
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PH 'For eight months, I was like a prisoner in my own home' Kelly Boyson, 29, is single and lives in south London. She says: “In December 2014 I was working at my desk when
suddenly, everything started spinning – it was very scary. Thankfully, the initial attack passed quickly. I blamed it on an ear infection caused by bad eczema in my ears. But worryingly,
the attacks continued and then got progressively worse, so I went to see my GP about it. Initially, he thought I had labyrinthitis, an inner ear infection affecting hearing and balance,
which is similar to Ménière’s. He gave me some anti-sickness tablets, but they didn’t work. It got so bad that it started affecting my life and career as a recruitment consultant. I had lots
of days off sick and would often suffer attacks when I was in the office. The room would spin for hours, making me feel nauseous, and I’d spend hours in the toilet being sick. RELATED
ARTICLES In May 2015, after six visits to my GP and another long wait, I spoke to a specialist who confirmed it was Ménière’s disease. With no history of it in my family, hearing the
diagnosis was a shock, especially as there’s no cure. Over time, my condition worsened and became so bad that I started suffering drop attacks, where you collapse on the floor and can’t
stand up. Once I was on my way to work when I collapsed on the Underground platform. Someone dialled 999 but because Ménière’s isn’t classed as an emergency, I had to wait three hours before
a transport police officer took me to hospital in a taxi. My specialist told me it was too dangerous to go out on my own, so I had to stay at home unless someone was with me. The problem
wasn’t the illness itself – Ménière’s isn’t life-threatening – it’s just that you can fall down anywhere. I was struggling to hold down my job and in the end, I just had to leave. For eight
months, I was like a prisoner in my own home. When it’s bad, there is nothing you can do – not even cook or go to toilet. You’re completely immobilised. On a rare night when I did go out
with one of my friends, I was in a club when I had an attack and started spinning and swaying. The bouncers thought I was drunk – even though I don’t drink. The trouble is, most people
haven’t heard of Ménière’s. It’s an invisible illness as it isn’t obvious from the outside. And even though it’s classed as a disability, many people don’t understand. I applied for
disability allowance in 2015 and my application was declined twice because it was felt there was nothing wrong with me despite having medical reports confirming my condition. I appealed and,
thankfully, was awarded the highest level for mobility allowance. Many sufferers get depression, especially as you can lose your hearing because of the condition. I’ve lost nearly 50 per
cent in my left ear. But Ménière’s is different for everyone. Some suffer one attack and never again, others have regular bouts for the rest of their lives. GETTY Ménière's disease is
a disorder of the inner ear Sufferers learn to notice signs prior to an attack. I have left-side Méniere’s rather than in both ears so for me, the first indication is losing pressure in that
ear, similar to when you’re landing in a plane. Next, I can’t hear anything and then tinnitus starts. By then, my head’s spinning, I’m feeling sick, I can’t stand up, my coordination goes
and I lose control of my body. I get about two minutes’ warning before the full attack occurs. There is nothing I can do to prevent it. I just have to let it run its course, which can be
up to three hours. There is no cure for Ménière’s, just treatments you can try to ease symptoms. After my diagnosis, I was treated with steroid injections and in November 2015, I had a
grommet placed in my ear to help reduce pressure. That worked for a while until it dropped out. But nothing’s worked particularly well so I don’t take medication now. I’ve changed the way I
eat, as a low-salt diet can help reduce the amount of attacks. I also take Salovum, which is concentrated egg yolk powder, to help reduce inflammation and it seems to be working. PH Kelly
Boyson, 29 has been diagnosed with Ménière’s disease Although I still get tinnitus, I haven’t had a severe attack for months. It’s brilliant because I feel like I’m getting my life back on
track. I started work again last October, after an 18-month gap, working four days at a recruitment agency. I’m enjoying every minute. I’ve also had my first book published – an adult
colouring book. While I was stuck at home, I began colouring other people’s drawings to pass the time. I’d always been creative, so produced lots of sample drawings and sent them to
publishers. By the end of 2015, I’d received a contract. My book Travels In Colour was published last August and I’m planning another. Being a positive person helps me get through the bad
times but, thankfully, there aren’t many of those now. I try to conduct a normal life and if an attack happens, I deal with it. I’m not going to stop my life because of it – there’s too much
that I want to do. Some people find relationships suffer. One day I’d love to get married, but when I meet people for the first time, I’m paranoid about how they’ll react. If they have a
problem with it, they’re not the right partner – it’s as simple as that.” SHOCKING EFFECT FIZZY DRINKS CAN HAVE ON YOUR HEALTH MÉNIÈRE’S DISEASE: THE FACTS l In the UK, about one to two
people in every 1,000 suffer from Ménière’s disease. Although there are many treatments, the evidence to support their efficacy is poor. l Symptoms include vertigo (a sensation of violent
spinning), tinnitus (ringing in the ears), hearing loss and aural fullness (a plugging sensation in the ear). l It’s more common in women than men but can affect children, too. It’s most
common between the ages of 50 to 70. l It’s not known what causes Ménière’s. It was thought that it was due to increased pressure within the inner ear membranes. _FOR MORE INFORMATION ON
MÉNIÈRE’S DISEASE, CONTACT THE MÉNIÈRE’S SOCIETY ON 01306 876883 OR SEE MENIERES.ORG.UK. TO ORDER TRAVELS IN COLOUR (OLYMPIA, £11.99), SEE EXPRESS BOOKSHOP AT EXPRESSBOOKSHOP.CO.UK._