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Headphones with a plain white circle between them and angry lines symbolizing noises surrounding it.

Hiding from Sound

If you could go back to just before I was diagnosed with multiple sclerosis (MS) and ask me which of the 5 senses that I was born with was my favorite, I would have told you that it was my ability to hear. That’s not to say that I thought being able to hear was more important than being able to see (for example) because I definitely couldn’t ever imagine being blind. I just mean that my ability to perceive sound simply brought me so much joy, whether it was hearing music, the sound of someone’s voice, the soundtrack of a movie, or the subtle trickling of a small stream of water. It was all so unique, and it often allowed me to just close my eyes and immerse myself in another world far away from all the problems of the one I live in. It offered me an escape. But, then MS came strolling in and found a way to make me wish, at times, that I couldn’t hear at all.

Stimulus-sensitive myoclonus

The first thing MS did to affect my relationship with acoustics was introduce me to myoclonus. Have you ever experienced a sleep start? You know, when you’re falling asleep and then you suddenly feel like you’re falling and your leg kicks, causing you to jump awake? That’s a myoclonic jerk, and there are all sorts of forms of myoclonus caused by different things. In my case, I experience “stimulus-sensitive myoclonus,” which just means that some kind of external stimuli like something moving, a change in light, or a sudden sound causes me to experience a myoclonic jerk. Basically, I jump like the audience in a movie theater watching a horror movie, except for me, all it really takes is for someone to walk into the room without me hearing and calmly say, “Hey, Matt.” And just like that, it feels like all the muscles in my chest, and sometimes even my arms, involuntarily contract.

Creating background noise for myself

The thing I found to work best at preventing this from happening was to actually avoid sound. But we live in a noisy world, so how realistic is it to hide from anything that could possibly make a sound? So, the next best thing was to save up some cash and buy some noise-canceling headphones so that I could turn them up and drown out the unexpected sounds of the world around me. You see, volume isn’t really the issue; it’s the spike in volume that gets me. If I’m in a silent library and someone drops a pen on the floor, then that sudden difference between dead-silence and the drop of a pen is enough to “startle” me. So, by wearing headphones, I can make sure my ears are always receiving some sort of input so that if there is a sudden sound in the room, there isn’t a sudden difference in sound to me.

Random episodes of tinnitus

I later started experiencing random episodes of tinnitus (ringing in the ears). Sound from nowhere. This “ringing” didn’t last too long at first, but it was shockingly loud. I would be walking around just minding my own business when out of nowhere, a high-pitched hum would fill one of my ears, usually causing me to flinch as if someone had run up behind me and poked my ear with a stick. Have you ever taken one of those hearing tests where you wear headphones and a high-pitched tone would play in one of the speakers and you would have to indicate whether you heard it in your left or right ear? My tinnitus would remind me of that! That sound! Like I am walking around with those headphones on every day, and they would randomly play that high-pitched tone in one of my ears.

Earplugs made my tinnitus worse

Eventually, tinnitus would start to strike more often and became more of a roaring rumble that lasted much longer. I especially noticed this when I tried taking a break from going to bed with my headphones on and instead tried wearing earplugs. At first, I thought I might have put them too deep into my ears, but when I still heard the tinnitus after I barely even put them in, I knew it wasn’t that. I assume my tinnitus “got worse” when I wore earplugs because wearing earplugs was like sitting in that silent library. There was nothing to drown out the sound of that terrible ringing, so it seemed to be even louder! Now I use a white noise machine every night to help drown out that sound.

Hiding from sound within other sounds

With all that said, I still love sound. I love music, listening to someone tell a story, and even weird electronic noises. But I sort of feel like listening to any of those things now is like how I can still walk, but because of MS, I just can’t walk how I used to. When I walk, I am always aware, with every step that I take, that I have MS. Now it’s kind of like that with sound. I am almost always aware, by hearing the world the way I hear it now, that I have MS. The sound of music can still offer me an escape from the world when everything is just right, but mostly? In order to drown out all the noise of life and the noise caused by circuitry issues in my demyelinated brain, I have to hide from sound inside other sounds, and that can get old really quick.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Bones18
    4 weeks ago

    This is such a perfect article for me today. Last night we went to see Joan Baez in concert. She has a soft soothing voice but somehow a light kept flashing off her guitar and it was making me jump. The lighting was very difficult and the crowd felt suffocating. I have for years overreacted to sound, movement etc. It is very uncomfortable. Reading this article made me feel less alone. Thank you.

  • Matt Allen G author
    3 weeks ago

    I have never been to a concert in my life, not because I never had the opportunity, but because even before MS it just seemed too overwhelming and unenjoyable. So now? I couldn’t even imagine!

  • Michelle
    1 month ago

    I also have problems with sound. This is extremely difficult because my husband LOVES MUSIC. We cannot ride in a silent car.
    My interpretation of my reaction to sounds is as if someone is screaming at me in a foriegn language. I do not know what I can do to fix whats wrong. My husbsnd bought me noise cancelling earplugs. These help some but a constant musical onslaught is hard to escape. What makes music even harder for me to deal with is when a group of people are singing round robin style or god forbid two different songs at once.
    I hate that grocery stores are always playing music. I have to shop and therefore have to listen. I have had to ask them to turn down the music.

  • Matt Allen G author
    3 weeks ago

    Yeah, the ear plugs and noise canceling headphones do help but not always. It’s unrealistic to wear them 24/7 plus, not exactly enjoyable to always have stuff in and on your ears!

  • Shelby Comito moderator
    1 month ago

    Hi @taxigirl2003, thank you for taking the time to share what you’re going through. I can imagine this must be such a challenge and so frustrating to manage – especially when there are so many places where you’re faced with this that many don’t even realize… like the grocery store! I know some of our community members have mentioned wearing noise-canceling headphone while grocery shopping can be helpful, which might be worth trying if you haven’t already? We’re thinking of you and here for you!
    – Shelby, MultipleSclerosis.net Team Member

  • Matt Allen G author
    3 weeks ago

    I used to wear ear plugs to the store because if something happened around me (I mean danger) I could still kind of hear whereas noise-canceling headphones might prevent me from hearing what I need to hear to be aware of my surroundings.

  • Clarissa
    1 month ago

    I think this is related–I never experienced misphonia until after I developed MS. For me, hearing someone chewing can really set me off!

    https://www.sciencealert.com/can-t-stand-the-sound-of-people-chewing-blame-your-brain-science-misophonia

    The article talks about the brain changes observed in people with this condition; we know MS causes other changes in the brain, so I would not be surprised if they feed off one another.

  • KLauren
    1 month ago

    This ‘sounds’ just like my reaction! I developed it about 4 years ago and I wasn’t sure why. I’d had MS 18 years at that point and was still RRMS, never had an issue with sound. Now, I notice that I elicit an exaggerated startle response (that everyone sees) to unexpected sounds, sometimes movement.
    I began to question if it was a myoclonal spasm that I experience, but after reading your story, I’m sure that it is.
    I love the suggestion of white noise to prevent the sudden introduction to startling sounds and I’m going to try that! I’ll tell my MS friends. Thank you for sharing your experience!

  • Matt Allen G author
    3 weeks ago

    Yep, that definitely sounds like what I deal with! White noise definitely help me, I found a little white noise machine online for like #20 or so, well worth it!

  • Matt Allen G author
    3 weeks ago

    oops, “$” not “#”

  • pmm
    1 month ago

    Your description of sound sensitivity and tinnitus could be one that I would write about myself. Wow. Trying to figure out the source is challenging, though. My neurologists don’t think that either has anything to do with MS, curiously. I am so sound-sensitive that I have a very difficult time over the past few years of even going into a store that is playing music over the intercom system … that constant noise sets me on edge and completely distracts me from what I went in there to buy. I have a huge startle response … even when I know that my husband is coming up the steps, I will often *still* jump when he pops into the upstairs room. Another activity that I can no longer tolerate due to noise sensitivity is going out to a restaurant with a large group of people. I feel as if I can hear every single conversation in the entire restaurant, making me really disoriented and unable to carry on a useful conversation with my colleagues. I’ve recently learned to wear my noise-cancelling ear buds in these situations, which helps significantly and helps me focus on the one conversation that I am having and filter out all the rest. Unfortunately, as is the case with you, the ear buds do not help with the tinnitus … mine sounds like the constant background “roar” of a gazillion crickets. Curiously, it gets really loud if I happen to be in a stressful situation. What does yours sound like, and does the amplitude get louder when you are feeling stressed?

  • Matt Allen G author
    3 weeks ago

    My tinnitus sounds like the sound they play in a movie when a grenade goes off and everyone’s ears are rining for a moment, only for me it lasts for hours. I haven’t noticed my tinnitus getting worse when I’m stressed but considering how stress tends to make all my other symptoms worse, I would guess my tinnitus would also get more intense, guess I’ll find out when something stressfull eventually happens in the middle of an “episode” of tinnitus.

  • Nancy Jo H.
    1 month ago

    What you’ve described falls under the heading of, What Your Doctor Doesn’t Tell You. I’ve been experiencing all of it and have directly asked two of my physicians if it could be related to my MS. The answer was a definite “No”. I didn’t believe it, instead I tend to go with my instincts. I’ve always hated being intentionally scared by someone, even as an adult. The MS was diagnosed in’98 but symptoms began in junior high. People think it’s funny to scare me. And even funnier if I tell them why I don’t like it. Thank you very much for your informative post!!

  • Matt Allen G author
    3 weeks ago

    I hate it too and if after I explain this to someone they still try to give me some kind of scare? I would just END that friendship because I hate it so much haha…

  • RhonaK
    1 month ago

    Is it possible that there is a visual equivalent to this? I find that if something suddenly moves unexpectedly I jump and often cry out. This could be a car moving while we’re driving along, even if it’s at the other end of the street, I will cry out in panic which obviously upsets my husband who’s driving because he’s concerned there is a danger he hasn’t seen. Or if someone unexpectedly moves something on the table in front of me while I’m eating I find myself choking.

  • Matt Allen G author
    3 weeks ago

    Yes, stimulus-sensitive myoclonus can occur due to both audible input and visual input. When you read about stimulus-sensitive myoclonus, keep in mind that when they talk about “light” causing a reactin? Everything we see is visible to us because of light even if what we are looking at is not the actual source of light. Although, I am not a doctor, so take that with a grain of salt haha

  • wolfmom21fl
    1 month ago

    Oh man! i am so hyper sensitive to certain sound now i can’t even begin to tell you. as i sit here typing this i am pushing my computer desk away from the side desk to lessen the sound of the vibration that carries over from the fan that’s running on the other desk. it’s maddening. sounds that really bother me are ones like rattling.. or that sound of a styrofoam cooler vibrating against something LOL. i have tinnitus now 24/7. it’s to the point that i must turn the volume up on the TV because i cannot hear it over the sound on the tinnitus. i am told there is really nothing that can be done for this. Really sucks. Nothing stops the sound of the tinnitus but i do need a white noise something going so i run a fan or my small room A/C unit to sleep.. it covers the sound of everything else outside of my little cocoon.. TY for sharing

  • New to me
    1 month ago

    Thank you for sharing..Wow! I thought I was alone with the myoclonus jerks! We had to turn the house phone way way down because when it would ring what ever was in my hands went flying! When my wife is putting dishes away it is actually painful it sounds incredibly loud and grating to my nerves, think fingers on a chalkboard! A baby crying or little kids running and screaming is hellish, Oddly enough I still love loud music..

  • Matt Allen G author
    3 weeks ago

    I can’t help but smile right now just because I have never really talked to anyone who so clearly understands what I am dealing with regarding sound, ESPECIALLY THE SOUND OF DISHES! When someone starts doing dishes, I literally drop what I’m doing, “run” into my bedroom, and throw on my noise-canceling headphones. I’m sorry that you know what that feels like though…

  • wolfmom21fl
    1 month ago

    and yes the “jerk” happens all too often as well! when i am falling asleep i often have that happen but then i have restless leg as well. or i should say restless limb. at one point i was flailing .. like my arms and legs both.. i was knocking things off my night stand and have broken things like my Mom’s special lamp, and a few small fans.. LOL.. but the startling sounds like the phone ringing definitely does it.. even when i am waiting for a call i know is coming!!! LOL

  • Matt Allen G author
    3 weeks ago

    I had to adjust all my ringtones/alert sounds on my phone to be “calmer” and gradually get louder because they would make me jump every time I got a text/call and people would wonder why I sounded so annoyed with them when I picked up haha…

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