Silence! (or how to break me using sounds)

Photo by Breakingpic on Pexels.com

Are you getting enough?

No… no… put that wild thought out of your mind.

You, my dear, are thinking of something else altogether. There are no sexy half-clad people involved. No Massive Attack or something more contemporary playing in the background. No soft light that shows your funny left side in a better light.

In fact, what I would like you to focus on, is the place of my dreams:

A library.

A museum.

A near-empty supermarket.

Dublin Zoo at 9.30am. The Irish countryside. An empty park.

All this, and then just a little bit more.

Pure and utter unadulterated…

Silence.

The kind of silence that some find awkward. Unsettling, even.

To me?

Paradise. Heaven. Luxury.

Allow me to explain.

While my hearing is, in fact, normal, the older I get, the more I find loud sounds hard to stomach. Not only mentally, but physically I am finding it hard to try and remain focused in noisy environments because its impact on my body can be quite drastic.

When you try to explain the mechanics of noise sensitivity and eye pain, people look at you bewildered and laugh, “Who on earth gets EYE pain and NAUSEA from NOISE?!”

Sadly, however…

I do get stabbing eye and facial pain from noise. Or intense continued dull facial pain.

Trigeminal neuralgia takes no prisoners.

Neither does hyperacusis.

Noise intolerance associated with demyelinating lesions present in the central auditory area does exist.

I’ve been searching for medical data in reference to hyperacusis linked to MS, with TN and nauseous bout. Sadly, there is little to find, although more people are coming forward with the same symptoms.

When I read a report that mentioned that one of the test subjects in a hyperacusis research project felt a sharp pain on the cheek when the phone rang, I almost jumped up and down for joy. For years I had languished in silence and in quite similar extreme pain, but neurologists and other medical professionals were left in the dark as to what might be the cause. Each time, I was told that pain like this was unrelated to MS.

In short, I felt misunderstood.

Also, holding the phone to my ear results in brutal stabbing pain in my eye and ear. The result of the research project mentioned before showed that “The three individuals who took part in the research project all showed changed auditory evoked potentials with suggestions of a lesion in the brainstem. The subsequent MRI then revealed demyelinating lesions in the ipsilateral pons and the central auditory pathway.”

Afraid of being called antisocial, though, I try to stick to it for a short period if I’m with friends or family. But once noise literally and physically hits my face, eyes, and ears, I need to remove myself physically from that sound as soon as possible, as the pain can become quite intense in just a split second.

This means that one of the very first MS lessons I learned, was what I thought triggered that particular pain. I quickly found out that cold air, sudden loud noises, brushing teeth, eating, laughing, etc. all hinted at the same result: trigeminal neuralgia. TN was diagnosed at the same time as my MS, and it would eventually lead to hyperacusis, or the inability to digest sounds. It feels as if the brain is burdened with too much-used bandwidth at once, aided by aggressive offline symptoms.

One banging door; one person blowing their nose; one person talking loud on the phone, in airplanes etc.; kids shouting; loud music in shopping centres; the doorbell; TV & radio; the washing machine or dryer; the fan of my laptop…

Worst case scenario?

Hearing myself talk during a full-blown trigeminal neuralgia attack.

With a facial pain attack, noise is enhanced, and each sound is one too many. I often half-yelp my way back to my quiet haven in the house. Nice, it is not.

To this day, after almost 13 years of living in Ireland, I continue to wonder how Irish people can hold long conversations in noisy pubs for example. I wonder how people can answer phone calls when loud music is playing, or when a television is almost dancing around on its own because of its volume levels. All I see are moving lips, but no text balloons to give me a hint on what is going on.

The longer I remain in a noisy environment, the faster my face becomes a hybrid canvas of a blank stare and intense, stabbing trigeminal neuralgia pains, sometimes several times a minute. Other times, my face is completely stiff, and it feels as if it’s being pulled off my face at the same time. Neither is pleasant.

I wholeheartedly agree that a lot of healthy people also have issues with noise, and how easily they get distracted by different sounds. It’s with great sadness however that I look back on the time when I met so much ignorance when I tried to explain the complexity of noise intolerance, and the relation between noise and facial pain.

Having to pull out of a meeting or social gathering has turned me into an anxious being, as character assassination because of a chronic illness is not something anyone wants to experience. “Ah sure, she’s just faking it, or just too lazy to join in,” were probably thoughts on some people’s minds.

If only they knew how fast my life comes to a standstill because of frequent and sudden TN and noise intolerance.

After all, sounds are all around us. Just in my quiet corner here right now, I hear bees in my ears (tinnitus), the fan of my laptop spinning, the media-box of my television buzzing as it’s continuously repeating its setup cycle, and my neighbour’s house alarm is having a life of its own also.

Of those four, I cannot fix one of them. I tried and failed miserably.

So yes, we all have a bit of that shit-life-syndrome every so often. Sadly, we cannot unlearn our illness or MS symptoms like we can unlearn unwanted behaviours. What a severe symptom like this does teach us, though, is how we can best create a workaround that should lessen its impact on us.

Ψ With a little help from those around us, we should be able to live life peacefully. However, if trying to explain noise intolerance to people didn’t work out that well at first, change the dialogue. Sometimes people need to see it from another side than just their own before they can mentally place your illness. In my own case, being humorous and ironic usually helps.

Ψ When noise intolerance strikes you hard while watching television, turn off the volume, and turn on the subtitles so you can still follow what is happening.

Ψ Ask people to help somewhat by “lowering their voice for a short while”. Don’t say “for the rest of the day,” as that would only lead to an unhappy atmosphere. Quite often, loud people don’t even realise they are speaking this way.

Ψ I now arrange to meet people in smaller groups of three or four, and in a place where there is no loud music or kids shouting. The only time I would be in a larger group would be during family events, advocacy get-togethers or other meetings.

Ψ Try to invoke a meditation session in your mind using a mantra.

Ψ Reading seems to make me more relaxed when I find myself in a noisy environment, as I’m replacing humdrum with the words I am reading in my head.

There is a myriad of ways you can ‘escape’ your intolerance. I’m quite sure you can come up with many, just don’t try my way of fainting at a rock concert because I was too close to the stage, and the noise and the stage lights toppled me over. I’m sure my eyes had all sort of twinkly lights blinking in them, but really… that was one bad, bad idea.

Avoid that which makes you quiver, and if you cannot, take some precautions before you leave the house (earplugs, cotton wool, etc.)

Am I limited, so?

Yes, I am. Sadly, so. MS symptoms can happen in many different ways. In the end, it’s about getting just enough noise to be able to function, and enough silence to help you look after appalling MS symptoms.

If you crave silence because you’re not getting enough of it, treat your wellbeing as your prime temple. Your face will be grateful.

Noise intolerance is not widely discussed amongst people with MS. Please help spread the word.

About Willeke

Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological services in Ireland. By highlighting difficult issues that come with an MS diagnosis, she hopes her words and tenacity can bring justice to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.

©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.