Misophonia is serious.
It is a big deal to get through school with Misophonia, it can be a nightmare, and seriously torturous. I would not have survived grade school without earplugs, and even still, I would have to take bathroom breaks often, just to cool down. I listened to music any chance that a teacher would let me, because sometimes I could hear triggers through my earplugs. I constantly looked frightened and annoyed, and was often very socially awkward. It is a miracle that I even graduated. I got very angry, and cried a lot, mostly in secret, because no one believed me when I told them that sniffing, chewing, coughing, tapping, and ticking, were causing me so much distress. I would get home and lock myself in my room. I constantly had loud music or a fan going to drown out my family, which sounds terrible. Growing up, and going through school is confusing, and difficult enough, but add an odd, and unheard of, brain tick, in the mix, its and makes for an even more exciting time, way too exciting, and stressful.
Misophonia causes me act freakish and odd, for far too long, I was ashamed and defeated and sunk into a dark place, but now, I embrace and respect my uniqueness. Yes, it is strange and weird that I cannot physically and emotionally allow myself to repetitively sense a trigger, and not flee, stop, or mute the trigger in some way. Additionally, once I’m wound up from a trigger, I have to consciously calm and soothe myself back down to normal, before I can re-enter reality, and focus, without a charge of adrenaline rushing through me.
It’s weird, and it is exhausting, but I have a neurological disorder, that pumps extreme floods of weird hormones, and sensations throughout my body, at the slightest noises and experiences. I live with it, I have no other choice. The sooner all sufferers and those around us, accept that we cannot control being triggered and accommodate it, one isolating aspect of the disorder is lifted, and it becomes a little bit easier to process.
There may not be a cure, and if there ever is, it is very far off. Some of us might be dealing with this, on our own, with internet knowledge, for the rest of our lives. I advocate, and write, for the future generations of Misophones. So that maybe we can gain faster recognition and prevent more blind suffering. Mental illnesses and strange learning and sensory disorders, in general, have risen in children by 16% in the last ten years, so humanity will have to pay more attention to the issue at some point. There are many theories in which people believe that the boom in technological advances within the last 50 years, happened faster than the human mind was capable of widely handling, and this is having some backlash. The younger generations now know how to work a cell phone or tv at one and two years old, yet ask your grandma to work them, and see how that goes. This is terrifying, in a way. Regardless, that is only a theory, as to why the learning and sensory disorders are rising, but it is a proven fact that there is an issue, whether it is chemicals we are consuming or using, or what.
Don’t struggle scared and alone, or be uncomfortable.
It has slowly been coming to light, every single day, that there are a lot more Misophones out there than we all realized. We are not alone. We are all different. We are triggered by different things, and affected in different ways, and we all seem to have very sad stories. I’m tired of hearing sad things about Misophonia. Yes, we have a disorder, but we still deserve to be happy in life. We shouldn’t be embarrassed to ask to put on music, or turn on a fan, or get up and take a breather or stretch when we are stressed, and we shouldn’t feel ashamed when we have to wear earplugs, or headphones, whenever, or wherever. Instead of hiding the reasoning and being passive, use the only weapon we can use over the anxiety, include others, and cope as best as we can. If people ask questions about why we are different, or particular, use it as an opportunity to advocate, explain that you have a neurological condition and how it affects you!
No human is perfect, everyone has some sort of battle they face. You have no idea who around you may be struggling too, and being open may create a lot of healthy dialogue. We are not hurting anyone but ourselves by bottling up and feeling ashamed of our biggest hurdle in life, no matter how huge we think it is or how hard we think it will be.
I suffer from misophonia and people make fun of me for it and does the sounds more to annoy me. What do I do?
First of all, let me state, I am sorry that persons are treating you this way – that’s a terrible way to treat friends, family, or anybody! It’s terrible that they’re treating you so horribly, especially since you cannot control it. For most persons that haven’t heard of Misophonia, it’s a “weird” quirk and nothing more. Self advocacy is going to be your best tool here. Share resources with these persons, and try to help them understand. I am sorry that they are not taking you seriously. Sometimes it is important in life to advocate for ourselves. Avoidance is also helpful when possible. Explain the disorder when you are calm, not triggered. If you attempt to confront a person during a trigger, it may lead to a fight.
How do you know you have misophonia ? Have you been diagnosed with this condition?
It is rare for there to be an “official” diagnosis of Misophonia, due to the nature of the disorder. As Misophonia is newly recognized, it is not in the DSM 5, or other medical diagnostic manuals. This does not mean the condition is not real – it is very real, and is being researched at great institutions, including NYU and Duke University. My doctor has mentioned my auditory over responsivity and Misophonia in my medical file, though there is little that he can do beyond that. There is an option to find coping skills providers – but some may be very limited. It is important that you talk to your doctor/therapist and educate them on the disorder if they have not been already.
How can I deal with my excessively talkative and loud mother when I have misophonia?
Misophonia is often triggered most by those we love. During a Webinar in 2016, Dr. Jennifer Jo Brout of the International Misophonia Research Network explained that Misophonia sufferers are around their parents, friends and family the most, and therefore have the most memories associated with them. A stranger triggering you is not likely to evoke the same response as a loved one. This can be furthered when emotional relationships are strained, and outside emotions are brought into a situation that would have initially been dictated by a receding fight/flight response. You can find a guide specifically made for parents here: //www.misophoniainternational.com/parents-quick-guide-misophonia/.
Is neural repatterning treatment (NRT) really effective for misophonia?
The research is simply not there. As of now, there is little reason to believe this will work, since Misophonia is a complex physiological problem. These therapies are expensive and not likely to work. While we must be hopeful, we cannot in good faith recommend these treatments. There is also a potential for harm, because these treatments have not medically been proven to work on this condition. It is always best to err on the side of caution. Luckily, there is a clinical trial at Duke University that may happen in the future, and with this means the potential for treatment – right now, the only thing keeping the study from happening is the funds. As of now, there is NO treatment that will help Misophonia. Some things may help for coping techniques, and vastly lesson the effects of the disorder. You should not try a medical treatment until there have been treatments that have been scientifically vetted by professional researchers and clinicians.
My family doesn’t believe I have Misophonia and mock me, but whenever I show them proof, my mom gets mad. What can I do to convince them otherwise?
I am sorry that your mother gets mad. That is unfair to you, and disheartening to hear as an advocate for this condition! Misophonia is not a joke, and you are not acting out just for attention. This can sometimes be hard to explain to a parent. However, there are some great advocacy tools that have been made for the very purpose of explaining this disorder to people, including parents. You can find a guide specifically made for parents here: //www.misophoniainternational.com/parents-quick-guide-misophonia/. This guide was written by Dr. Jennifer Jo Brout, a PsyD with numerous years experience with sensory disorders. Dr. Brout is also a school psychologist. It is important that you explain to your mother what is going on, and that you provide her with high quality information. Be patient, and try to explain the disorder when you are not triggered – as explaining during a high-trigger period can lead to an unnecessary fight and residual resentment.
How can I explain to my mother that I’m suffering from misophonia?
Misophonia is not a joke, and you are not acting out just for attention. This can sometimes be hard to explain to a parent. However, there are some great advocacy tools that have been made for the very purpose of explaining this disorder to people, including parents. You can find a guide specifically made for parents here: //www.misophoniainternational.com/parents-quick-guide-misophonia/. This guide was written by Dr. Jennifer Jo Brout, a PsyD with numerous years experience with sensory disorders. Dr. Brout is also a school psychologist. It is important that you explain to your mother what is going on, and that you provide her with high quality information. Be patient, and try to explain the disorder when you are not triggered – as explaining during a high-trigger period can lead to an unnecessary fight and residual resentment.
Would you consider having a relationship with someone who has misophonia?
Since I have Misophonia, I can tell you I have been in relationships with others, while having this condition. You may be happy to know that I know several happily married couples where one party has the disorder! Some of these couples even have children. For me, I think it would be challenging to be with another person with the disorder, but I’d certainly try.
Are there any hearing aid like devices that can help with my Misophonia?
Not a “hearing aid” type of device, but audiologists can have you fitted for sound generators. These generators can generate white noise, or other forms, and are fitted to your ears. However, they are very expensive and may not be covered by insurance. You could mimic this process with ear buds on your phone and a white noise app. While this is not a cure, it can be helpful to mask triggers in public. Unfortunately this will not work for visual triggers – or the visual perception of a sound trigger (ie. Seeing somebody
Do you have misophonia so bad that simply looking at the source of irritating sound without even hearing it disturbs you?
Once something becomes a trigger, we are also triggered by the memory of the response. This, like PTSD, means that your brain believes this event is “bad”. I have strong eagle eye, such as autism – so my visual receptors are far worse than even the common misophonic. For me, I am triggered by events in my memory even years later. Cognitive Behaviour therapy does not work because Misophonia is a learned response, which is also why we are so horrendously bothered by even the visual of an event, if the sound itself is not present.
Is it still misophonia if I hate sounds of murmuring people or people talking loudly and laughing at some point? Certain tones of voice make me feel whatever they’re saying is about me. Not the sounds of things, but people?
There is no reason to differentiate between if this is Misophonia or not – the fact of the matter remains that no actual studies have confirmed “what triggers” the disorder. It is very likely you have auditory over responsivity. Since Misophonia heightens threat responses, it is not out of the ordinary that you feel “attacked” by these events. While there is no cure, it is important that on a cognitive level you remind yourself that the person is not directing their emotions at you, and that it’s your brain skewing the event. This can be hard to learn, but in time, it can happen. As for the trigger, it will still occur, but keeping your threat-arousal levels lower will help your recovery time. Try to remove yourself from situations, as sensory information is cumulative. Breathe deeply, and “ride the wave” until you feel better.
What is the science of misophonia? What causes the disorder and the immediate negative response to certain repetitive sounds?
The science of Misophonia is new, and it’s complicated. Since the science is so new, that means there is room for changes. However, much of the research is stating that it is caused by the amygdala and fight/flight part of the brain. Essentially, when a misophonic person hears a “trigger”, their brain is processing the event as a threat. This is not necessarily the ear doing so, but the brain’s perception of sounds. More research is necessary to determine why certain sounds cause this reaction. A proposed study of this nature is starting shortly, with consults from Sukhbinder Kumar, Duke University, Mercede Erfanian, and Dr. Jennifer Jo Brout, who proposed the study.
What is the cause of misophonia?
While there is no official cause for Misophonia, because the research is preliminary, Misophonia is likely a neurological condition in which an aversive response to otherwise normal audial and visual stimuli occurs. This response happens, likely, because the amygdala is not processing sounds properly. This is physiological and occurs in the physical part of the brain, not cognitively. Because of this, Misophonia does not have a treatment, and cannot be “treated” by cognitive or basic therapies. A treatment for Misophonia may be developed, but it has not yet been.
Is anyone here struggling with misophonia? How do you deal with it? I am really suffering and it’s getting worse.
I have suffered from Misophonia for quite a few years now. It’s a horrible condition that sometimes leaves me with no hope. As an advocate for the disorder, I have met many wonderful people that are finding ways to live their lives. For me, I spend a lot of time alone and have a job ‘from home’. I limit exposure as much as possible, because exposure is cumulative and can make the disorder worse. Depending on your degree of suffering, coping depends on your own lifestyle. Management of Misophonia is imperative, as there is no cure as of yet. I suggest that you read over the coping skills that I will link to the bottom. I survive this disorder because I have hope. I have hope in the absolutely wonderful research that was conducted at NYU – and even more hope that the continuance of this research at Duke University will lead to an effective treatment within the next few years.
What is it like to see someone suffering with misophonia?
It depends on the sufferer. They become withdrawn and solemn. They will be irritable, and suddenly yelling at you for things that you do not think is a problem. The sufferer is not connecting on a cognitive level – in their brains it is physical. You see, when a person has Misophonia it is as though a knife is being held to their throat. The fight flight system of the brain has been activated at a deep level, and the person may not even understand their anger, and even physical sensations of pain. It is important to believe the person, and remain calm in the situation. If possible, discuss ways to lessen the triggers – simply exposing their selves to the trigger to ‘get used to it’ will not work.
How to cope with Misophonia: //www.misophoniainternational.com/misophonia-coping-tips/
Information on treatment: //www.misophoniainternational.com/misophonia-treatment/
How to explain Misophonia: //www.misophoniainternational.com/how-to-explain-misophonia/
Sensory Diet (Coping skills by OTs): //www.misophoniainternational.com/product/sensory-diet-adults-susan-nesbit-o-t-digital-download/
What is Misophonia? //www.misophoniainternational.com/what-is-misophonia-3/
Current Misophonia studies: http://misophonia-research.com/current-research/
Research advisory board: http://misophonia-research.com/misophonia-advisory-board/
Misophonia Providers: www.misophoniaproviders.com
Donate to Misophonia research: https://www.gifts.duke.edu/dukehealth/?designation=3910412
MYTH Misophonia means you hate sound
While hatred of sound is the literal definition, misophonia sufferes are negatively impacted by certain trigger sounds, which leads to adverse reactions such as a fight or flight response. A more accurate definition is being tortured by sound.
MYTH It’s not a big deal. Just ignore it
It IS a big deal. A misophonia sufferer cannot tune out trigger sounds or ignore them. In fact, quite the opposite is true. Our ears tend to zone in on the trigger sound, blocking everything else out. Trust me, if we could ignore it, we would.
MYTH Misophonia? Oh, isn’t that when you get annoyed at people chewing?
While most misophonia sufferers find chewing/mouth sounds to be the most common triggers, there are so many other sounds that also affect the misophonia sufferer. These include tapping, other repetitive sounds, clicking, sniffling, breathing, etc. The list of trigger sounds is endless.
MYTH Oh, I hate that sound. I must have misophonia too.
There is a vast difference between hating something and being triggered. You can hate broccoli, but you can avoid it. If it is on your plate you can dump it into the trash. Being triggered brings on intense and raging emotions. If you are triggered by a sound, the ONLY thing you can think about is how to make it stop and go away. Often, you cannot make it go away, and it may continue to echo in your head as the day goes on.
Hating certain sounds can be common, such as nails on a chalkboard or snoring. They annoy you; you do not like them, but you are able to get past them.
When you have Misophonia, you can’t. You feel hate, rage, you may want to hurt someone, and/or you may want to hurt yourself just from hearing one little sound that no one else seems to notice. Sometimes, you become so triggered you experience a meltdown. (Sometimes you feel so emotionally overwhelmed by unpleasant feelings that you can no longer control them or hide them from others.)
MYTH Take a pill and you will be all better.
It would be nice if there was a magic pill that could help. However, there is currently no medication for misophonia. While some sufferers find some relief to their reactions by taking anxiety medication, anxiety medications are not intended for misophonia.
MYTH Just keep listening to the sound and you will get used to it.
NOT TRUE! The more you hear a sound, the more of a trigger it will become. Exposure makes the triggers worse. Think of a swimming pool: when you jump in the water, it’s freezing. A while later you get used to it. Translating that water into sound, the water gets colder and colder until it is freezing. Similarly, if you can imagine being in a dark room, and then walking outside to a bright sunny day, you immediately shut your eyes as they begin to adapt to the change in brightness. With Misophonia, if you think of the sun as the sound, it gets brighter and brighter; literally blinding you.
MYTH Seriously? You cannot possibly hear that little noise.
People with misophonia have exceptional hearing. Our sense of hearing is hyper sensitive and we can hear certain sounds that most people cannot. For many of us, our hearing is so sharp that sounds are often amplified. One sufferer during a visit to an acupuncturist heard the needle drop. We really are that sensitive to sound.
MYTH You used to get upset when I was chewing, and now you’re triggered because I clicked my pen?
Triggers have a way of growing. Like a cell, you have one trigger, and as time passes you develop additional triggers. And that cell will grow into a giant misophonia monster.
MYTH Katie has misophonia and chewing is not a trigger for her. Why does it bother you?
We are all different, individual people. Therefore, we all have different triggers.
MYTH When Tommy is triggered, he puts on his headphones and he is fine. He doesn’t freak out.
Just as we all have different triggers, our coping mechanisms are also different. White noise is often recommended for a sufferers. For me, white noise IS a trigger. Some people find yoga or exercise helpful, and others prefer absolute solitude. We are like snowflakes; we are all different. What works for one of us does not work for all of us. Misophonia is not “one size fits all.”
MYTH You heard that crunching an hour ago. Get over it! Yesterday when you heard that sound, you didn’t go ballistic.
Depending on your general state of mind, and the intensity of your trigger, bouncing back from a trigger is not instantaneous. For many sufferers, the reaction can last an extended period of time. We would love nothing more than to get over it and go on with our day.
Our triggers are our triggers. We cannot change them, but our reactions to those triggers CAN change. One day a trigger might send me into a rage, the next day the same trigger may upset me. But I can refrain from anything further. Another day, I just might break down into tears. That is the strange thing about misophonia. It is very unpredictable.
MYTH Do you really have to start yelling and throwing things? For crying out loud, I was just chewing a piece of gum.
Yes, I do have to start yelling or throwing things. I don’t mean to. That is just my natural reaction to the trigger sound. I do not want to react, but sometimes I will just lash out without thought.
MYTH You must really hate me. You are always so grumpy around me.
No, I do not hate you. At all. But the sounds that you make trigger me, and it is difficult to be around you. It is not YOU, it is the sounds. Please do not take it personally.
MYTH If the doctor doesn’t diagnose you with misophonia, it cannot be real
Not true! There are very few medical professionals who are familiar with misophonia. Honestly, it’s like finding a needle in a haystack. Most sufferers are self diagnosed. Many do require special accommodations for work or school and will require medical documentation, some people even get misdiagnosis and need to suffer consequences and other treatments they don’t need and end up recurring to sites as www.the-medical-negligence-experts.co.uk to repair these damages. In that case, consult the audiology department at the hospitals. Screen the provider to make sure they do know about misophonia so you don’t waste your time.
QUESTION Is there anything I can do to help you?
Yes. The most important thing you can do is offer me your support and understanding. Understand that if I walk out of a room, I need to escape for solitude. I need to get away from whatever is triggering me. Listen to me when I tell you my triggers and how they make me feel. Understand that I have no control over what triggers me, and if I need to step away from the dinner table, it is not because I am not enjoying your company. I just can’t handle the trigger sounds.
Learn about misophonia, and help spread awareness.
I know that when you look at me, you see something other than who I really am. I am not a raging psychopath. I am not a total bitch. I am not a maniacal lunatic. Who am I, really?
I am someone who suffers from Misophonia, a rarely known and seriously misunderstood disorder. My brain processes sounds differently than a normal brain. I am not even talking about bad sounds. I am referring to normal, every day sounds like sniffling, tapping, and even breathing. I am also triggered by visual images, tapping, leg shaking, or even mouth movement. Yes, it sounds completely insane, because it really does not make any sense.
People judge it as human nature. I am guilty of this as well. If I took one look at you smacking a wad of gum I’d think that you were a complete slob. I have watched someone in total disgust as they shoved her hand deep into an ear shattering, crinkling bag of chips, then thrust a handful in their mouth. I have wanted to scream at the top of my lungs, “WHY ARE YOU SUCH A PIG?” If I had the opportunity to get to know you when you were not chewing, I’m sure I’d think you to be a very nice person. We might even be friends, but I just cannot look past the visions or the sounds of your chewing. No matter how caring and compassionate you may be, I cannot get past my feeling of disgust. So, chances are, I will miss out on the opportunity to find out because I cannot get past that initial impression. It does not make sense.
Misophonia is a condition where your sense of hearing really makes no sense. You might hear a sound that you find annoying, you may huff and then just go on with your day. No big deal. For someone who suffers from Misophonia, that is not possible; it IS a big deal. We are not simply annoyed by sounds, we are tormented by them. A sound as simple as clicking your pen open to sign a document can send us into a raging fury. My brain does not allow me to ignore it or move past it. Instead, my brain tends to zoom into that click. That one single click. It becomes louder, more intense, and I am overwhelmed with feelings of hate and rage. I want to hurt someone. I want to hurt you, and I want to hurt myself. I feel the blood rising to my face. My body overflowing with hatred. I have to resist these feelings. Sometimes, I am successful, I can hold my rage in but it eats away at me festering inside. Other times, I may just explode. I may blurt something out loud; a rude comment, a curse word. I may throw things. I have no control over these words or actions. They are simply a reflex reaction to what I feel, and I just react without thought. Many times, I use myself as a human stress ball. I grab my arms or legs and dig my nails deep into my skin, drawing blood…anything to divert my attention from that torturous sound. It doesn’t work, but I need an avenue to try to release some of these feelings and emotions and to try to divert my attention from the trigger sound(s).
Most people will not understand, many will mock even if you try to explain. Not that long ago I went into a retail store to pick up an item. I usually avoid shopping in person, but thought it would be a quick errand. There was a construction worker just standing in the aisle snapping his tape measure incessantly. I shoved my earplugs in but it was too late. As I walked past him, I asked him politely if he could please stop making that noise. I explained that I have a medical condition and it was very disturbing. He looked at me with absolute spite snapping it again and asked me, “This noise?” Yes, that noise, is it really necessary? As I walked away, I overheard him saying, “Oh that’s just some lady bitching about me.” I completely lost it, and immediately went into a meltdown. I grabbed the item I was there for and headed to the checkout. I am positive that people must have been wondering what a full grown woman was sobbing about. A few women in line were sympathetic and offered to let me go to the head of the line. As I was explaining the situation to the manager, my fellow shoppers watched in complete disbelief at his contemptable behavior that he continued to flaunt. The entire time I was in the store this man stood pompously, watching me, grinning as he continued to snap his tape measure. He seemed to find my meltdown gratifying. I was beyond livid at this man and I called security on him. I had to sit in my car for at least 45 minutes before I gained my composure enough to drive home. Would I call security on someone for popping gum? No, of course not, but I felt as if this man was not only tormenting and bullying me, but actually assaulting me. Afterwards, I second guessed my reaction, and I even discussed this experience with my therapist and was assured that I did the right thing. Now, in a non-agitated state of mind, I feel justified in that action. It brought me closure. Hopefully, he learned a lesson in human compassion.
If you see someone that looks distressed or seems to be “freaking out” over something simple, do not be so quick to judge. Chances are, there’s a reason behind their madness. Just because you cannot physically see a condition does not mean it is not real.
I do not normally act this way, I do not want to act this way. I do everything in my power to fight these feelings, but I know that I will not win. Until there is a cure, I will just have to continue to live my life by avoidance as best as I can. If you see me having a meltdown, remember that I suffer from Misophonia and the way it affects me makes no sense.