I am on a mission to educate people. If you’ll let me, I would like to take you out of your comfort zone – a place where conversations are easy to understand and listening to music or watching sports on television doesn’t make you feel sick and grumpy.
In my zone – which is far from comfortable –words, music, and environmental sounds occasionally turn into a horrendous cacophony.
Imagine for a moment you’re hearing Bach’s Toccata and Fugue in D Minor combined with a busy metal construction plant and the clamour of a traffic jam in New York. All at once. All at high volume.
This is the reality of life with hyperacusis.
When hyperacusis suddenly appears
Recently, I was on the couch with my mobile phone on my belly, feeling relaxed in a sun-drenched living room while listening to music. A few moments later, and without warning, nausea suddenly kicked in. I felt sick and irritated with the pandemonium coming from my phone.
Hyperacusis had reported for duty: another spell of major noise intolerance.
I was desperately trying to turn off the sound of my phone, but it appeared not to accept my urgency to end the musical trial. I felt like shouting at it, but then it would only increase my level of insensitivity.
Nobody ever said MS would be easy.
To my ears, incoherent everyday noise not only sounds thunderous, but it also makes me nauseous, causes pain and makes me want to run as far away from the source as I can to make it stop.
About a decade ago, I fainted at a concert because vertigo-like symptoms which are also present in hyperacusis suddenly turned the stage lights and sound that blasted through the venue against me.
Why I want to educate people
Hyperacusis in people with MS has been noted, but few people know it exists. This is why I am on a mission to educate people about it and have been writing about it for a while. And, as you’ve probably guessed by now, my preferred method of communication isn’t talking, but scribbling in notebooks, or texting via mobiles or typing on laptops as listening to my own voice just adds to the discomfort.
Hyperacusis has taken a huge toll on my mental health, and I am not alone. People who were once outgoing and cheerful often turn into hermits. Social situations that used to be enjoyable are suddenly intolerable. Instead of interacting and living in the world, we are often forced to do everything online – from grocery shopping to organising medicine deliveries. Even social interaction is reduced to texting and emailing since even a small bit of spirited chatting can make you feel sick.
How I combat it
This specific MS symptom has made me quite practical-minded because I always need to be prepared for each event that might throw me off.
My handbag is basically a toolkit for when things turn left when I need them to go right. I love films, so I always carry earplugs in my handbag in case it kicks in when I’m at the cinema. At home, I use the subtitles setting on my television so I can turn off the sound when people shout at each other on news programs. On days when the facial pain of trigeminal neuralgia (TN) joins the ranks, I do my grocery shopping online, since I know from experience that TN also raises the probability of hyperacusis kicking in. When I am forced to venture out, I’m prepared for the anxiety that will undoubtedly result from this.
Even with all the symptoms described above, life with MS doesn’t have to be unbearable. All it means is that life is a bit more demanding than average. As long as I put mind over matter there will always be a silver lining. And I will always be willing to look for them.
UK/MED/19/0008 January 2019