Noise, fear and MS



Here we go again.

Somebody please turn off the sound of my breathing.

And the thinking voice in my head.

Fingers on the keyboard.

I can go on, if you wish…

Doorbells, banging doors, a beeping phone, the dog five doors down, high heels on a wooden floor, the shower, cars, people talking…  Things like these make you wish you could make a few dents in your duvet purely because making one in the wall would make too much noise.

Even though I’m the wearer of an antiquated variation of brand-new earplugs, I still hear my breath, thoughts and typing thanks to the power of a currently very suggestive mind; in fact, hyperacusis, or sound sensitivity (SS), can make your mind do everything it wants, especially when its premise is to annoy you to the highest degree possible.

If this doesn’t lead to some form or phobia, I don’t know what will.

But, LGO

Life Goes On.

Hyperacusis is a literary badass. Who or what else could get away with different names for roughly the same thing like hypersensitivity to sound, sound sensitivity, loudness/noise intolerance? Add misophonia and phonobia and you know we’re in an eclectic group of disorders.

Tinnitus: noise heard in the ears or head that is not externally produced, like ringing, hissing, chirping, etc.

Hyperacusis: decreased tolerance for inordinate loudness of sounds, not specific to a certain pitch or sound because of the way the brain’s central auditory processing center perceives noise, associated with a component of pain and distress; often along with tinnitus

Phonophobia: fear of sounds, often is found in conjunction with hyperacusis

Misophonia: also known as Selective Sound Sensitivity Syndrome (4S), intense dislike of a sound or group of sounds, should not be confused with phonophobia. Although primarily neurological, it is not a sensitivity to the volume of sound, but a physiological reaction to specific sounds.

“Tinnitus, Hyperacusis, Misophonia and Phonophobia…what’s the buzz?”
By Katherine Pollard)

My hyperacusis started with tinnitus when the world was happily buzzing and beeping all around when suddenly, boom!

There’s no hiding from environmental sounds, and while other people have no qualms about normal levels of decibels, in some people it makes them want to run, and run fast. You can compare hyperacusis to the mother of all migraines, but instead of a headache, it happens in your ears. And, in a bid of solidarity, when noise attacks your senses, your stomach feels like giving you breakfast or lunch, whichever was the last in line in the feeding tube.

If you have ever experienced hyperacusis before, you know it comes with two contingency plans, one for yourself, the other for the world around you.

SELF: Hide, add custom-made earplugs and add tape over your ears so they don’t fall out. Then, take something to settle your stomach and try to stop the flow of mental talk inside your mind. Get under the duvet, watch muted TV programs with subtitled programs or read, as long as it takes your mind of your ear pain and of the dread of sounds. Finally, try to sleep.

WORLD: Inform people you will be incommunicado for the next twelve hours. Mute the sound of your mobile phones, pull out the cord if you still use a vintage one. Ask for understanding. If too hard to explain, send them online for proper information. Those who do not have any hypersensitivity to sound simply cannot imagine how their chewing and swallowing noises can be so disgusting to another person. Often, protests from the sufferer are misinterpreted as passive-aggressive personal attacks or simply not believed at all.

Last week in hospital, someone reminded me that this looked like my trigeminal neuralgia (TN) contingency plan. Not one to waste battery space twice as fast and at the same time in a body ridden with MS, I said, “OK, well, before you begin the process of redesigning my 3D face, maybe instead of printing just my face, please redraw the plans to include my inner ears as well. Since my ears are numb on the outside as well as on the inside, I want them redesigned in the Art Nouveau style of the 1890s to the 1920s. Not Deco, but Nouveau.”

Why Art Nouveau?

I joked that I wanted something fluid, feminine yet strong, because 15 years with fatigue, stabbing trigeminal neuralgia, hyperacusis and other neurological symptoms, I wanted to look at something that is still feminine, flowing yet powerful enough without compromising on its need for functionality.

In essence: MS takes, shatters and reshapes life in ways you never thought possible and it’s your job to make the most it because symptoms could throw a spanner in the works on any given day, hour or moment and just when you had plans to go for a walk or started packing the car for the holiday you were looking forward to.

As such, irrespective of what sound sensitivity throws at you, do not allow yourself to give up even though it is a stinging, disabling issue that causes anyone to think, “Really? Are you serious?”

I have no problem saying that this year especially, SS has made me want to live like a hermit. On an equal footing, trigeminal neuralgia (TN) can make you live in fear of having a new facial pain attack. Sadly, sudden noise can set off both SS and TN and can live separate from each other, while other times they compound each other.

It is important so to not let noise issues get a chance of growing in strength. When you do give up, MS itself is one step closer to having a place inside your mind, and other related worries or foreboding borne out of recurrent hyperacusis attacks get more air to breathe.

Because of my 15-year-old MS/TN past, I have learned that being afraid of the next attack is as piercing, numbing and disabling as an attack itself. With both getting worse, lessons from TN now apply to sound sensitivity attacks as well.

Or, you may go into remission leaving you to wonder how or when the next exacerbation will arrive and which part of your body will be affected, let alone if there will turn into a permanent form of disability.

It is the not knowing that make you jump up when wake up blind in one eye, happy that when you go to sleep that night, your eyesight is back to normal. Yet, by that time, you may be experiencing maddening facial pain or tremors that cause you to drop everything you try to grab. Not knowing what each day will bring sometimes feels like trying to write a book in the sand on the beach. 

What those lessons are? Don’t be fooled by fear of the unknown since something is only unknown when you experience it for the first time. As such, seeing fear for what it was –false evidence appearing real- was illuminating as I feared that trigeminal neuralgia, hyper sensitivity to sound, or MS as a whole would break me despite knowing I had been through worse before.

Fear is a choice

Crucially however, I learned that fear is a choice.

The first time you find yourself in a medically induced precarious situation, fear is a very real neurological response to a perceived threatWhen the perceived threat presents itself, your automatic response is not a choice—even if other people do not feel fearful of the same threat triggers you are.

The second time you’re faced with a similar danger, if you haven’t learned to override your fear response by coaching, CBT etc, improper control of your emotions will turn your fear into more oxygen that will lit a fire that you yourself created. 

Each time fear engulfs you, you become more anxious about that perceived threat even when that threat is a false illusion created by the mind in the form of belief systems borne out of trauma, pain, and emotional wounds. They are dishonest signals created in an attempt to keep you stuck in that pain cycle from your past, so, trust the professionals when they say that you can and will rise above the anxiety, PTSD etc you’ve been experiencing because of your illness. What’s more, believe their clients when they say they are amazed how quickly they could see a positive change in themselves once they did commit to CBT (the go-to treatment for anxiety, PTSD etc).

In plain MS-related English: anxiety when you hear sudden sounds that have the ability to trigger facial pain or hyperacusis equals feeling like you lost control, unsafe, and not validated because people think you’re just overreacting. If you have problems dealing with your illness, sign up for counseling sessions as each of us owe it to ourselves to be the best versions of ourselves we can be because it sucks the energy out of your own mind, and that of everyone and everything around you. Your own mental and emotional wellbeing will thank you profusely.

Please don’t assume I see things way too rosy.

I don’t. 

I don’t. 

Having an incurable illness is difficult and I would be dishonest if I said it was as straightforward as writing a ten sentence essay on a hundred dotted lines.

It is not.

It goes without saying that I am wary of worsening facial pain but I cannot afford the physical strength to ‘live in fear of’ anymore and have negative feelings about my illness as it sucks more energy from my already depleted gas tank than it does when I have a positive outlook on life. It is something I learned from the five weeks of denial right after my diagnosis when I said:

“I’m not doing this denial-thing anymore. I will live. Be positive. Love life. Open the windows. Breathe in nighttime air. Smell the rain and embrace life just as life has given me the opportunity to start over once again, with MS but without any mental and emotional nonsense that has the ability to worsen an already neurologically compromised body.”

Having MS is the ultimate challenge.

Not learning from it would be a Shakespearean tragedy.

blog-awards-2018_winners-gold-mpu-e15716510568512018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

◾ MyTherapy: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapy: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2019. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and with appropriate and specific direction to the original content.




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