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Myoclonus – Why am I So Easily Startled by Sound?

Myoclonus – Why am I So Easily Startled by Sound?

A few years ago it’s like something changed in me. Noise was so unbearable! Specifically, loud and sudden sounds. Everything is so loud, and when it is sudden, it can make me jump so violently I may drop/fling across the room whatever I am holding! One time, I was holding a plate with cake on it (we were celebrating someone’s birthday), and a balloon popped causing me to fling my plate of cake into the air, making a mess all over the floor. What the heck was going on? This was not your typical “a really loud noise made me jump” like in a movie theatre. When I say “it makes me jump,” I mean it causes my entire body to tense up so fast and tight that it’s like I jump, but it really is not the same.

I dealt with this for a while before finally asking my neurologist if it could be related to Multiple Sclerosis (MS) because it was so severe, and I had always been the guy who never jumped or flinched at a loud and sudden sound, even when watching a horror movie in the theatre! Very casually he said, “Yes, that’s called myoclonus”. I had glanced over that term in a neurology textbook, but for whatever reason I never really looked into that term. So I went home with a prescription for Klonopin (clonazepam) and started to further investigate.

What is myoclonus?

The first thing I read about was how there are different types of myoclonus:

  • Action Myoclonus
  • Cortical Reflex Myoclonus
  • Essential Myoclonus
  • Palatal Myoclonus
  • Progressive Myoclonus Epilepsy (PME)
  • Reticular Reflex Myoclonus
  • Sleep Myoclonus
  • Stimulus Sensitive Myoclonus

OK, but what does all this mean? Simply put, myoclonus is an involuntary muscle jerk. Myoclonus is a symptom and not an actual disease, and since it’s a neurological symptom, it makes sense that it would be a symptom of MS. The thing is: everyone experiences some form of myoclonus, even healthy people. Let me give you some examples; have you ever been drifting off to sleep and started dreaming that you are walking down the sidewalk when you trip on a crack, and as a result, you suddenly wake up because you feel as if you are falling, and so your legs jerk you awake? Usually, people refer to this as a “sleep start,” but the technical term would be a myoclonic jerk. Here is an even more simple form of myoclonus that almost everyone has or will experience; ever have the hiccups? Hiccups are a common form of myoclonus.

What causes myoclonus?

There are many things that can cause myoclonus such as epilepsy and stroke, but we are going to focus on MS. One possible cause of myoclonus is damage to the brain or nervous system; see the connection to MS? Multiple Sclerosis, a demyelinating (damaging) disease affecting the central nervous system (CNS)? Typically this can be attributed to a lesion near the brainstem because that area is responsible for the body’s startle response. We all need to have a startle response, it’s an important evolutionary trait that can be associated with the fight or flight response but in the case of Stimulus Sensitive Myoclonus it’s like someone turned the “startle sensitivity dial” up from 5 to 10. Either way it is believed that this has to do with the pathways involved in motor function. The brain sends a signal to a limb where the receptors on that limb have become overly sensitive causing that limb to overreact to that signal.

Because this may be the result of receptors that are overly sensitive to the electrical signals sent by the brain, the first choice in treatment is Klonopin, which essentially calms down electrical activity in the brain. Over time, you can build a tolerance to this medication and it will lose its effectiveness but there are other treatments used such as different barbiturates.

How sudden sounds affect me

So I deal with Stimulus Sensitive Myoclonus meaning loud or sudden sounds make me “jump”. Of all my MS symptoms I can honestly say this probably hinders my ability to enjoy life the most. Sound is everywhere and now it’s so loud! What is hard to explain is what “loud and sudden” means to me because it’s not just the sudden sound of a large explosion on TV that gets to me. It’s all about a sound that spikes higher than the ambient sounds around me. What do I mean? Well if I were in a crowd of loud people I would be fine so long as nothing louder than the crowd pops out of nowhere. At the same time, if I were at a library where it is totally silent, the sound of someone dropping a pen on the table would make me jump because in a room so quiet the sound of that pen hitting the table is louder than the ambient sound in the library. Luckily once I started taking Klonopin my quality of life greatly improved because I hardly ever jump to a sound unless it is something so loud and sudden that a healthy individual should startle. Headphone help as well but who wants to live 24/7 with headphones on?

My least favorite sound in the world is now the sound of dishes being washed; glass dishes banging together and silverware clashing. The sound is so “piercing” to me that I literally have to leave the room and that I can no longer handle going to certain restaurants that I grew up going to because they have an open kitchen where the sounds of dishes fill the room. Klonopin helps but only so much; dishes always seem to be more than that little yellow pill can handle. This affects me so severely that I spent a couple months experimenting with different material to help soundproof the walls of my room! One day it would be nice if I could move somewhere that I have enough land to not be too close to the neighbors barking dog or a busy street. I just want peace and quiet!

Are you sensitive to sound? Have you talked to your neurologist about this? What are some of your least favorite sounds and how do you cope with them?

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

  • BeachPanda252
    3 months ago

    I have the thing with loud sounds as well. In addition to startling though, loud noises cause me pain and an electric shock-like feeling down my spine and down through the back of my legs and up through my arms. It orignates at the base of my skull.

  • Donna Steigleder moderator
    3 months ago

    @beachpanda252 ouch, that sounds really painful. Does your neurologist have any suggestions on what to do to help with the pain or to prevent it?

  • Matt Allen G author
    2 months ago

    Man, I’m glad I don’t get that but sorry that you do! Sometimes I feel like loud sounds make my chest muscle tighten (like a flinch) but not always.

  • JojO19
    4 months ago

    I have been having this issue with school. My life feels horrible physically and it’s messing with me mentally and emotionally. I don’t know what to do! I’ll be sitting at school during an event with at least 500 other students and I’ll flinch horribly after someone breathes heavily on the microphone out of nowhere! The nerves from my neck down to my back are very sensitive so I’ll just feel my entire torso jump and my neck twitch like I’m a robot malfunctioning. I try the best of my abilities to play it off like nothing happened, but we both know that It looked like I had a stroke or something! I’m letting this hold me from being who I want to be, this problem even goes as far as me getting a pat on the back or pat on the head. My head or back will jump (what feels like 10,000 feet in the sky) and they’ll ask me if I’m OK or “did I startle you”? I wasn’t startledWTF don’t touch me! When I’m getting my photo taken for the yearbook they have a camera light that flashes and I’m not kidding you EVERY TIME my body will jerk and my head will shake so I always look like I’m retarded or special in the yearbook. I suffer from anxiety so it’s also difficult to communicate with other students or ask the teacher for help. It’s also a real problem focusing on my work or listening to what the teacher is teaching. I’m 16 years old, my past 6 or 7 years I’ve looked like a nerd or a mental human because of my anxiety. Life is awesome for others at least… Most of my life and to this day I just want to be a spectator, just someone who doesn’t have to deal with any of this. Don’t get me wrong I love life, and the importance of it is so meaningful! I’m not living my life the way I want. I don’t know if this is a call for help but I would just like others to understand what I go through. Thanks for reading!

  • carrieann
    4 months ago

    I’m so sorry you are going through this. Have you been to your doc? It took them two years to diagnosis me. Anxiety is not good. Are you on anything for it? Don’t ever feel you are alone

  • Matt Allen G author
    4 months ago

    Man, that sounds so similar to me, I can’t imagine dealing with this when I was in high school… What does your neurologist say about it? There are medications that MAY help but I am not sure what doctors do and don’t prescribe to someone your age? I really hope you find some way to manage it because I am 28 and if you made me spend the day in a high school environment the sounds and many other stimuli would just kill me.

  • Faith0358
    2 years ago

    I had no idea there was a name to this. In reading this, I finally understand why I’m so “jumpy”. Thank you for sharing!!

  • Matt Allen G author
    2 years ago

    The more I look into things the more I realise there is a name for EVERYTHING haha. Glad you found this to be helpful!

  • DonnaFA moderator
    2 years ago

    Hi Faith0358, we’re glad you found the article helpful! Thanks for being part of the community and joining the conversation. -All Best, Donna (MultipleSclerosis.net team)

  • Erin Rush moderator
    2 years ago

    I am glad this information was helpful for you and you can put a name to this issue now, Faith! Thanks for commenting! Best, Erin, MultipleSclerosis.net Team Member.

  • Sharelo
    3 years ago

    I was Dx in May. The startle thing is one of my biggest issues.

    Example: our dog is very quiet (when we got her from the shelter, we thought she was mute, because she made no sound for 2 weeks!) but occasionally, she’ll yap sharply when we play with her. That noise makes me physically ill.

    So did the one fire alarm we’ve had at work this year.

    Worried (and yes I’ve requested noise canceling headphones) now because our office is being reconfigured to an open concept. No more cubicle walls. We now will have just tables. Sigh.

  • Matt Allen G author
    3 years ago

    Yeah, the sharp yelping/barking of dogs is one of my least favorite sounds! And I could not handle the open space – those flimsy cubicle walls probably did a lot to help muffle the noise! Even if it didn’t seem like it, once they are gone you will probably realize how much they did!

  • Susan
    3 years ago

    When my husband sneezes it sends me through the roof. He has a very loud sneeze and I usually never see it coming.

  • Matt Allen G author
    3 years ago

    Haha that sounds like my father – it’s more of a yell than a sneeze haha

  • itasara
    3 years ago

    For peace and quiet do earplugs help at all?

  • Matt Allen G author
    3 years ago

    sometimes but not always – then all the white noise I need disappears and the sudden sharp loud sounds still make it through so sometimes it feels worse… White noise helps more than silence

  • linda walters
    3 years ago

    I was told this being startled easily was ptsd post traumatic stress disorder caused by some abusive relationships. That never seemed right to me because it wasn’t that abbusive I felt to cause such violent jumping at noise. Now this being an ms condition makes more sense. Thanx for sharing

  • Matt Allen G author
    3 years ago

    I am certain the most “MS Specialists” don’t actually know as much as they should so pinning it on something like PTSD is just easier on them, got to sound like they always have an answer for everything you know?

  • Lefty Lib
    3 years ago

    This is a growing problem for me. Startle effect seemed to be one problem, and being distracted and/or overwhelmed by sounds another. I have used the term ‘distracted’ or said I could not focus with too much noise distraction around me, but have never attributed a name to it, nor have my various neurologists.

    When it comes to socializing with just one person in a restaurant, it’s difficult if the tables are too close to each other; if the wait person is taking an order from a nearby table, and if music is playing at the same time. If there are more people in my group, it’s almost impossible to hold a conversation with one while other conversations are taking place at the same time.

    The frustration level transfers to the physical discomfort of my body tightening up and added emotional stress.

    I now have difficulty listening to my husband (who helps out so much) do the dishes. Those loud bangs of the pots and silverware while I try to listen to the nearby television, or work on the computer are too distracting and very hard on my ears so I do leave the room now which can be very inconvenient to have to do.

    On top of that, the sounds that spike can cause that startle effect to kick in too if I am in the kitchen with him briefly! Ambulances, fire trucks, etc…. I hold my ears while they pass, otherwise it’s way too painful.

    During a pretty severe relapse years ago, I had gone numb on one side of my body and it caused a temporary yet scary hearing loss. My primary doc, and current neuro had treated it like it was part of a cold I had, and thought it was due to clogged ears. No matter what I told them, it took almost a month for them to consider what I already knew was the problem. Treatment didn’t come quick enough and I believe was part of the reason why I have these issues today. That nerve damage may be the reason why it all began for me…

    I do not like the idea of having to rely on another drug to ease this symptom, however.

  • Lefty Lib
    3 years ago

    Actually it wasn’t my current neuro now who didn’t treat me quickly enough, it was my current neuro at the time… cognitive fun for me too – always making mistakes!! 😉

  • Moira West
    3 years ago

    This has been a problem for me for over 50 years. My Neurologist has never offered me a drug to help me and my Audiologist has said I have the hearing of a ten years old with no problems at all on any level. Hyperacusis, hyper sensitivity to vibration as well as sound is a rotten combination. UK Neurologists seem to over focus on mobility. I use a powerchair these days because I am now SP but I am positive and keep trying to get help. This article is very helpful and I appreciate the contents. Thank you

  • Matt Allen G author
    3 years ago

    Haha did your audiologist say Hyperacusis? From what I understand, that basically just makes you irritable around sound but if you JUMP it’s a form of clonus, MYOCLONUS :p

  • meg383
    3 years ago

    OH MY GOD thank you for posting this!! I was just diagnosed in Oct., and this has been my worst nightmare as far as symptoms go. I am an HSP anyway, but this is something very different. My neurologists haven’t really taken it seriously and have never mentioned Stimulus Sensitive Myoclonus, although I have multiple lesions on my brain stem. They have said it is anxiety and recommended psychiatry. Noise exacerbates all of my other symptoms and makes them flare up considerably. I haven’t been able to work, and have trouble going out of the house a whole lot because of this. I wear two ear plugs when I do, although it is worse in my left ear. Grocery stores have become my nemesis. I have even described to docs that hearing dishes clank as being painful, as others here have. My partner wears headphones when he watches tv in another room because the sound vibrates and bothers me so. The washer/dryer can literally render me inert and unable to move any muscles, the spasticity/confusion gets so bad from the noise. SO glad I found this article.

  • Matt Allen G author
    3 years ago

    Yeah, I don’t think most neurologists even know why myoclonus is, sad because it’s such a simple neurological symptom, I even heard Dr. House mention it on that TV show in someone he thought might have MS! lol.

  • Neshama
    3 years ago

    I don’t know if anyone else can relate, but I really can’t stand the sound of the obnoxious car stereos that blares the deep extra loud base sound. It literally vibrates through my body and makes me want to chase the person down and scream at them. I never have, it just makes me want to. Also I went to see a movie after having not been to the movies in a long time, and I was shocked at the effect the loud speakers and more than life like sound had on my nervous system. When I got home my nervous system was vibrating from head to toe under my skin, and I had to lie down and close my eyes and have silence; it took several hours for the feeling to go away.I have been a little scared to go to see a movie since then. I’d rather watch at home where I can control the volume.

  • Matt Allen G author
    3 years ago

    I live in SoCal so the sound of crazy loud bass, street racing and sirens are just the sounds of the night. I hate it but as far as *I* know it’s just part of life. The cars with loud exhausts are what get me the most!

  • Michelle
    3 years ago

    Oh my word… I thought I was just anxious… I’ve become very jumpy the last year… Never thought it could be this. Mine is worse with someone touching me when I don’t see it coming. I’m very sensitive to touch… My husband lays his feet on mine they instantly cramp up.. If he touched me by accident during sleep I jump… It’s very annoying

  • Cari
    3 years ago

    (For me) It’s not so much being startled by sound, it’s the inability to filter sounds that I seem to have developed.

    The washer, the blender, the TV, a conversation… It all comes in at the same volume and tone.

    And yes, I do have the ‘sleep jerks’. Especially annoying when I am wide awake… In the grocery store…And I violently twitch…

  • Matt Allen G author
    3 years ago

    I have that issue too, I can’t hold a conversation in a room full of other people having conversations, it’s like everyone is just as loud as the person right in front of me. IDK what that is called but it is not myoclonus, the “sleep starts” you describe is.

  • Laurie
    3 years ago

    I first experienced shaper sensitivity to sound during the flare up that led to my diagnosis. I was attending church that Sunday and every time the organ played I had to cover my right ear especially. The sound was unbearable. I’ve had an increasing tendency to startle easily since then, especially when the phone rings. I suspected it was likely tied to MS. Now I know for sure. And yes, I have a new lesion on my brain stem.
    Thanks for posting this.

  • Matt Allen G author
    3 years ago

    Odd that one ear seems worse, interesting though

  • Laurie
    3 years ago

    That should have read hyper-sensitivity, not shaper sensitivity.

  • DanaS
    3 years ago

    Wow! I had no idea other people with MS suffered with this. Thank you for talking about it and why it happens to some of us.
    Some hard to handle sounds for me are the vacuum cleaner and a blender along with just plain loud sounds and too much stimulation, like large crowds. I may not always have a muscle jerk but it is always uncomfortable and makes me grumpy at times.

  • Alysongayle
    3 years ago

    yes!

  • Matt Allen G author
    3 years ago

    Oh, the blender… ugh, I forgot about that one…

  • kicknMSback
    3 years ago

    I, too have become sensitive to certain types of sounds, and can’t process loudness in general especially if I am tired. Sometimes, it is not even the loudness but the amount of stimulation in general, that sends me packing or gets me irritated or wears me out. So, it may not be apart of MS, but because my brain doesn’t process as well anymore it definately is a side effect. Either way, I think it is worthy of mention when you are with your nuerologist the next time.

  • Matt Allen G author
    3 years ago

    Haha I brought it up long long ago, that is the only way I even know about this and was able to write this post. I too get the “over stimulation” thing but that is different than myoclonus.

  • Kajeph
    3 years ago

    I too have a hard time at movies and other gatherings. It hurts my ears. I didn’t know it could be related to MS. Thank you for sharing this.

  • Steve E
    3 years ago

    Well written Matt. I work in “that” restaurant in Manhattan. I’ve gotten so used to life being so unbearably noisy, to the point that when I do manage to get out of town for a couple of days the peace and quiet can be deafening.
    The loud TV thing, large crowds, sporting events etc.It really hit the nail (softer hammer please) on the head.
    I find it hard to explain every feeling I have to my Neuro, so I dont bother anymore.
    Thanks Matt.
    Steve

  • Matt Allen G author
    3 years ago

    It’s tough but it was hitting me so severe I had to find a way to “make it stop”.

  • Nobu
    3 years ago

    I was working in an IT service desk job – you know your friendly computer support people on the phone (I am joking – sometimes we can be a real annoyance.) I thought I would try to see if I could do this work with my IT background. But, I cannot tell you how much I hated hearing the phone ring. I am not a big phone person at home but I think after reading this, I might have some sound sensitivity. I even get cranky when we have big discussions around the dinner table – the noise just gets to me. It is not the topics or the act of discussions, my family has always been like this I actually enjoy the banter. But it seems that the loudness and overtalking can really get to me. Something for me to pay attention to in the future.

  • Matt Allen G author
    3 years ago

    This made me think, I should have been more clear about something, myoclonus is not “not like sound because it really irritates me”, I mean it does, but it specifically refers to the physical startle response that sudden sounds may induce.

  • Cathy Chester moderator
    3 years ago

    I am so happy you wrote this, Matt, because after almost 30 years of living with MS this is a NEW symptom. I had no idea this is what it was! I am relieved but I do hate that it’s affected the way I tolerate sounds. Particularly with music.

    Cleaning the dishes has now taken on a whole new meaning!

  • Matt Allen G author
    3 years ago

    No one can ever stop learning, ever, there is always something new out there!

  • ms carrier
    3 years ago

    I am also startled by loud, sudden noises. I do like to play my music very loud in the office if no one else is there. That is not the same. It may be loud but it is not sudden. I can usually tell what the next song is.

  • Matt Allen G author
    3 years ago

    I know EXACTLY what you mean, I hate noise but I love blasting the streo in my car as loud as it goes. It’s not the same at all.

  • Angie
    3 years ago

    I have been experiencing these symptoms for about 6 months, really did not want another pill, but might be only option.

  • Matt Allen G author
    3 years ago

    Yeah, something addictive like clonazepam might not be the BEST answer but it really make life a bit easier.

  • Diana Chapman
    3 years ago

    Yes thank you for saying this. Since my MS diagnosis sound just sends me over the edge now. Blaring tvs, loud traffic sounds, crying babies have me running the opposite direction or just seem to instantly make me angry where before they didn’t.

  • Matt Allen G author
    3 years ago

    Seems like a lot of people with MS feel this way, I guess a lot of us were just lucky enough to get a lesion in this part of our brain…. haha…….

  • Larisa (Ris)
    3 years ago

    Thank you for this article. It helps the symptom make so much more sense, and let me pass it on to help others understand.

  • Matt Allen G author
    3 years ago

    that is my main goal here, to try to help p[ut something into words others may not be able to.

  • Dragon Lady
    4 years ago

    I,too,am very sound sensitive and cannot go to movies anymore because of my MS. Also, my husband is hard of hearing and has the TV blasting and it is hard for me. I didn’t know it was MS related. Thank you.

  • Matt Allen G author
    4 years ago

    well it COULD be, I can’t diagnose anyone on a blog, I am not even a doctor (haha) but I just want people to know that it could be this so they can bring it up with their neurologist. Good luck!

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