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 exactly 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 the 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.
Why does this happen & what can be done?
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.
My own experience
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 sound proof 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?