If you are a professional with an interest or curiosity in Misophonia, this information packet will highlight the important points about the disorder. This packet was created with doctors, researchers and other professionals in mind. If you are a patient or sufferer, you may print this document and bring it to your medical professional, if desired. If you have been linked to this page and are unsure what Misophonia is, it is a neurological disorder that causes an aversive reaction to audial (and often visual) stimuli. This packet features the following topics: What Is Misophonia Overlap with SPD SOR Current Research Research Programs IMRN Advisory Board Coping and ‘Treatment’ for Patients You can find the full document here: Misophonia For Professionals If you have any questions please contact [email protected]
What Causes the disorder? We don’t know the underlying causes of Misophonia, although there are numerous areas of speculation. There may be many causes for sound sensitivity or auditory over sensitivity. Is it Neurological or Psychological or Auditory? Misophonia does not appear to be “psychological” in nature (i.e. arising in the mind) versus physiological (i.e. having to do with the body and its systems). The lines previously drawn between “neurological” and “psychological” are very much blurred today, as are audiology and neurology. It appears to involve the neurological and auditory systems and has psychological consequence. Is it Genetic or Learned? The distinction “nature versus nurture” (“genetic versus learned”) is not as clear as was previously thought. “Gene regulation” means that a gene (or genes) can be turned on or off based upon an individual’s interaction with the environment. Also, disorders such as misophonia may caused by the interaction of multiple genes, rather than being attributed to one gene. This means that two people could have the gene(s) for misophonia and depending upon life experiences, one individual may manifest symptoms of the disorder and one may not. This also means that the age of onset of the disorder can vary depending on environmental circumstances. Therefore, this is a highly complex area that is certainly relevant and that we want to research, but it may not offer a quick and/or direct path to treatment (which is counter to what many of us have previously learned). Are triggers “people-noises”, “body-noises” or repetitive noises”? Although “chewing” and other “people-emanated noises”, such as coughing, sneezing, throat-clearing, etc. are very common triggers for people with Misophonia, other noises, (as well as visuals) have been noted as triggers in the early research. The Jastreboffs (2001) originally noted that Misophonia sufferers aversively react to pattern-based sounds, some that are person-oriented (e.g. chewing, coughing, sneezing, etc.) many that are not (e.g. pencil tapping, basketball bouncing, typing on a keyboard, etc.). This in fact, is how the Jastreboff’s distinguished Hyperacusis from Misophonia. People with hyperacusis react to loud sounds, whereas those with misophonia react to “soft”, “pattern-based” “repetitive-based sounds” (2001). This is a very complicated question since many processes interact within the nervous system (and sensory systems) ! The idea that a “trigger sound” may be attached to a specific person is confusing.This is an area that we hope to parse out through research, and that may prove to help with coping skills What about Visuals and other Stimuli? Many people with Misophonia also report aversive responsivity to visual stimuli. It is not yet clear within the research if this relates to movement, repetitive movement and/or other visual stimuli. It is not clear, as well, how many people with Misophonia have sensitivity to movement and/or other visual stimuli and if physiological and behavioral reactivity is the same. A subtype of Sensory Processing Disorder (Sensory Over-Responsivity) describes children who experience the fight/flight response as a result of auditory, visual, and other stimuli. Hopefully research will refine these subtypes in order to inform treatment.
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Misophonia research is up to each and every individual. As we stated in this article Misophonia does not research itself, and research isn’t free. In the perfect world the NIMH and government funded programs would want to help us. The reality is, unfortunately, that budgets are tight and the likelihood of Misophonia being classified let alone funded are next to nothing. This is where we, the IMRN, and you, come in to the picture. Misophonia research is not cheap. Yes, we currently have studies going but they were not created without the hard work and dedication of Dr. Jennifer Jo Brout. For Misophonia research to continue to be facilitated there must be sufferers that are willing to take the personal initiative to be proactive in both their own communities and on the web. Change starts from home. Sometimes it is as simple as asking your friends and family to each help contribute a small amount. After all, if 100,000 people give $1 that’s $100,000. We do not ask for your donations directly – we ask you to give them to the researchers. Community and Web Campaigns are both important to the cause. You can make the most out of a local event by spreading it online and encouraging others to do the same. With the hashtag#MisophoniaResearch we can take our disorder from the hands of harsh media articles, and take control of the message. There is no small effort for research. Each step you take is helping us to build the staircase to a greater understanding of sound over-responsivity.
A lot of my friends have had to take leaves of absence from the Misophonia support community. Most of them aren’t leaving because of altercations. Most are leaving because they simply need to take a break. We can become so misocentric that we drown in our own thoughts and ideas. Our disorder weighs atop of us, heavy like water, and holds us down. That’s why I’m proposing this term. Sometimes we can become misocentric misophones. I have a couple of thoughts on this. It’s not just an obsession with our disorder, it’s a lot deeper. Some of us have grown so intertwined with misophonia that the miso, or hate, has become the centre point of our days and even our lives. We can become trapped by anxiety. Will there be a trigger? Will they accept me? What if something happens? How dare they not respect me! It goes on and on and on until the only thoughts left pounding at our brains are thoughts of misophonia. If we let this hatred and reflection control our lives then the good moments are going to wither away like the bad. They will become one and the same. I can’t let myself fall into this trap. Sure, it may be healthful to vent our aggressions but what happens when venting becomes toxic? Misocentric can also mean that we are spending so much of our time, energy, and resources thinking about Misophonia that we’ve simply forgotten that there are people out there that don’t understand. They do not have the disorder. They do not understand how you think or how you feel. If we fall into this trap how will we be able to have a nuanced conversation that explains our point of view? We must always remember that we are more than our disorders. We have good days and we have bad. Yes, we have challenges, but who doesn’t? If we spend all of our time thinking about what’s wrong with us we forget to enjoy what is right. Instead of being misocentric misophones we must make sure that we are creating a world in which we can live in. While researchers are doing their best to find answers we must take charge of our lives. Our peace of mind is something that we must fight for every day.
I realize that you have noticed odd behavior in me, and are worried. I know, that you know, that something is wrong. You love me, and want the best for me. You see that I am unhealthy, an underachiever, and reclusive. No, I am not on drugs, except my prescriptions. Yes, my mom mentioned to me that several of you have inquired about my symptoms and appearance, and I do not blame you. I know I look concerning. I have been too embarrassed, to tell you what was affecting me, and honestly, I believed that you wouldn’t truly understand, once I told you. You may have noticed my acting funny, or rude, and you may have even gotten sense that I am hiding something. I absolutely am. I have been hiding how deeply, a simple brain tick has broken me down further than I fear I will ever have the strength to build myself back up, but I am still trying. I downplay the impact, and avoid it, in person, mostly, for myself, but no one can deny, that I have, literally, dwindled down to pretty much nothing, and become stagnant. I have a disorder. I drive myself insane, trying to avoid sniffing, chewing, coughing, and various other everyday ambient sounds, visuals, and feelings, because of the way it affects my mind and body. This is an extreme, and constant chore. I have become a jumpy, eagle eyed, contortionist, which causes, anxiety and stress, and gives me headaches and body pains. I don’t want to be this way, but I realize I was just born sensitive, which encompasses many different types of sensitives, that I have to overcome. That is how I have to live. I started struggling, consistently, in school, once I hit puberty, around 5th grade. However, after I graduated from high school, while coming into adulthood, adding so many new responsibilities, and starting college, at the same time I was battling my own mind, I went into shock. I had an extremely hard time processing and adjusting. I basically shut down, and hardly took care of myself. I became very depressed, unhealthy, and my sensitivities became exponentially worse. If you want to know why I spend most of my time, staying in one place, doing a handful of the same things, and avoiding all human contact, it is because, that is the only way to lower my chances of being uncomfortable and stressed. I have learned to fake, what I call, “peopling,” but can only handle so much before I am over stimulated, and just want to go back home to peace and quiet. Which only makes me lonely, bored, and then sad, perpetuating my depression. This is a real, and life changing disorder that is highly under-researched. There are millions of people out there like me, with very similar, depressing stories of “unusual” sensitivities, and alienation, I have personally spoken to quite a few, and there are countless testimonies online in support groups. The scientific community has begun to take interest, finally, within the past twenty, or so, years. This disorder is only, now, in the beginning stages of research, and still doesn’t quite make a whole lot of sense to anybody, especially those suffering from it. However, that does not change how detrimentally seriously, these weird sensitivities affect me, and others like me. Please, stop reminding me about my health. I know that I am underweight, and I am consciously trying to change that, but the extreme amount of stress and anxiety my body undergoes, is counterproductive. Plus, my lack of drive to do anything at all, poses an obstacle. I suffer from depression, that I constantly try to distract myself from. I go back and forth between being extremely productive, “people-y”, overwhelmed, and stressed. Then, on the flip side, I shut myself in my house for days and watch Netflix and lollygag on the internet, hating myself for being such a freak, and an outcast. Thankfully, I can go to work, and hang out with kids all day long, because they don’t really tend to trigger me (I can make them blow their nose if need be.) Plus, it makes me feel good, knowing that I am positively influencing their lives. However, overall, this is not the life I want to live, but I am trying to do the best that I can, with it. Now I know what tools I was dealt, and I’m aware of my unique set of sensitivities. I am educating myself, and have a plan. Have begun taking calcium, iron, b-complex, and drink a protein shake in the morning. I eat 6 meals a day, high in protein, stretch and take care of my body, so that I can feel better overall. Even if it hurts, it takes effort, and I have zero drive to do anything. I know that the better I feel, more able I am to handle the extra stress my body and mind takes. I have been practicing more targeted coping methods, and investing in better quality earplugs and headphones. I don’t know what the future will hold for me, but now I know that I am in control of it, not my disorder. I am still human. I am my parents’ child, and the product of my family. I am relentless, and refuse to be a victim. I will come out on top. My sensitivities will not define me. “I paced around for hours on empty I jumped at the slightest of sounds And I couldn’t stand the person inside me I turned all the mirrors around I’m bigger than my body I’m colder than this home I’m meaner than my demons I’m bigger than these bones” “Control,” by Halsey To the people I love… I need your help. Please, don’t be mad when I act peculiar, avoidant, or seem panicked, that only makes me mad at myself, and creates a bigger challenge when calming myself down. I don’t expect you to walk on eggshells, but if you could simply be conscious, and understanding of what bothers me. If you could even warn me, or avoid it, and then not dwell on it afterwards, that would be extremely relieving for me. I just need help, to be strong, overcome my disorder, and take control of my life. I need to feel validated. Help me and support me, instead of knocking me down, with good intentions, and a partial lack of understanding. I would be a lot happier, and a lot more fun. Please educate yourself about Misophonia (my aversion to sounds) and Misokenesia (my aversion to sights). Also, anxiety, depression, agoraphobia, and OCD, that I have been diagnosed with. I will be sending this out, to those I love, and I hope that it opens up dialogue between […]
Behandeling Misophonie Er is nog geen goedgekeurde therapie of medicatie tegen misofonie. Er is geen officiële behandeling. Er zijn slechts een aantal onderzoeken uitgevoerd en geen van deze komt met een vervolgonderzoek. Maar dit betekent niet dat we hopeloos hoeven te zijn. Er zijn verschillende therapeuten die kunnen helpen en je mentale strategieën kunnen leren om met misofonie om te gaan. Je kan een productief leven leiden terwijl wij meer onderzoek doen. Wees echter wel voorzichtig met iemand die beweert ‘de oplossing’ te hebben of die belooft dat een behandeling een hoge slagingskans heeft. Er moet meer onderzoek gedaan worden en er moet bewijs komen. Welke therapie is de beste? ‘Therapeut’ is een algemene term voor allerlei artsen (audioloog, psycholoog, ergotherapeut, etc.). Hij of zij heeft mogelijk een master of een doctoraat. Het is aan jou om te kiezen wat het beste bij jouw (of je kinds) behoeften past. Je mag ook contact met ons opnemen voor advies. Wat is een audioloog? Van oudsher mogen audiologen hun beroep uitvoeren met een master. Studenten die een audiologieopleiding doen, krijgen in de nabije toekomst echter een doctorstitel. Een audioloog met de juiste opleiding kan helpen door te evalueren of je misofonie hebt, al is er nog geen goedkeurde misofonie ‘test’ of diagnosehandboek. Audiologen kunnen je speciale oordopjes bieden die wel of geen geluid maken om de vervelende geluiden te blokkeren. Wat zijn counselors en psychologen? De meeste counselors hebben een master, maar sommigen hebben hun doctorstitel. De meeste psychologen hebben een doctorstitel omdat dit verplicht is als je jezelf psycholoog wilt noemen. Sommige cognitieve psychologen zien misofonie als een obsessief compulsieve stoornis (OCS in het Diagnostisch en Statistisch Handboek voor Geestelijke Aandoeningen). Er is geen overtuigend bewijs dat er neurologisch en gedragswetenschappelijke overlap is of dat de OCS-behandeling misofoniepatiënten kan helpen. Lees hier meer. Wat is een psychiater? Psychiaters kunnen medicatie voorschrijven om symptomen te behandelen (slapeloosheid, gevoelens van woede/angst/depressie etc.) die mogelijk komen kijken bij misofonie. Er is nog niet onderzocht of de medicijnen geschikt zijn voor de behandeling van misofonie. Wat is een neuroloog? Een neuroloog is een ‘Medical Doctor (MD)’: dit is een academische graad voor artsen met een master (geen doctoraat). Een neuroloog is gespecialiseerd in stoornissen in de hersenen, de wervelkolom en de zenuwen zoals epilepsie, migraine, Alzheimer en Gilles de la Tourette. Neurologen en psychiaters behandelen soms dezelfde, psychiatrische aandoeningen. Neurologen behandelen echter een groter palet aan stoornissen. Iemand die te maken heeft met plots ontstane veranderingen in het humeur of de zintuiglijke waarneming, zou een bezoekje moeten brengen aan een neuroloog, die kan andere stoornissen uitsluiten. Men verwart neurologen vaak met neurowetenschappers. Neurologen zijn MD’s en hebben medicijnen gestudeerd. Neurowetenschappers zijn ook doctoren, maar hebben een wetenschappelijke graad en zijn geen uitvoerende artsen. Neurowetenschappers onderzoeken het brein.
Why should you tell someone about Misophonia? What good will it do? As a Misophonia sufferer I have spent my life trying to avoid social situations, being triggered at the workplace, being labeled as a “bitch” because of my sudden attitude changes due to those triggers. Come on, think about it, who is really going to believe you when you tell them that the sound of them popping gum drives you mad? “Just ignore it,” “Don’t pay attention,” or “Tune it out” are the common responses. Why? The majority of people do not know that Misophonia is a neurological condition. They hear the same noises that make us want to attack and it does not phase them. When you tell them you suffer from Misophonia, your explanation is promptly dismissed because of lack of information. “You are making that up.” As a result of these reactions the Misophonia sufferer experiences many negative emotions such as hopelessness and despair then may start to isolate themselves. Why bother telling people? They will just think I am crazy and it is all in my head. You cannot allow discouraging opinions to negate the fact that Misophonia IS real. Granted, even if they hear the term Misophonia most people may continue to pass judgement but that is not your problem. You cannot let the ignorance of other people discourage you for advocating for yourself. The average person is not going to do anything to raise awareness of this condition, therefore the only way to raise awareness for Misophonia is to spread the word about Misophonia. Not to say that you need to walk up to every person you see and announce, “I have Misophonia.” But let’s think about the different groups of people that it would be beneficial to explain Misophonia to. Let’s start with family and friends. Why is it important for them to know and understand? Misophonia is not just your disorder because it also affects everyone in your family. Although you suffer with the torture of sounds, it is unrealistic to think that you have control your of your emotions when triggered. As a result, your friends and family also suffer from the repercussions of your trigger reactions. Knowing your triggers will hopefully help them being more conscientious of their actions. Whether you are in the workplace or a student, you are spending the vast majority of your day at work or school. Therefore it is relatively important to share your condition with teachers and/or your human resources department. Even if they do not understand the condition, by law they are required to allow reasonable accommodations. For students, simple accommodations such as the use of ear plugs or being allowed to test in a separate area can be very beneficial to your success. For employees, many accommodations can be made depending on the industry. Think about it in terms of workers compensation. Employers will modify job duties for the injured worker to avoid lost workday cases. They should also offer those modifications to you. If you share close work quarters with others, you may want to share your condition with them. Although they may not always understand, someone may surprise you. I share an office with another lady who spends her day triggering me. I considered telling her about my Misophonia but I was afraid that she would think I was crazy. We sat down with our supervisor and I began to explain my Misophonia and triggers to her. I was surprised that she did not judge me; she even asked questions. From that day on she has made conscious efforts to avoid doing things that trigger me. In return I have been more vocal about when things are triggering me. Words cannot express my gratitude for her acceptance. As for my other coworkers, I feel that the less they know about my condition, the better. The most challenging person that you should share this condition with is the one person that you would expect to be the easiest: your primary care physician. You should not expect that just because there is an MD after their name that your doctor is a medical expert and knows about every possible condition,. They don’t. It should go without saying that you should not trust treatment options from a medical provider that is not educated and trained in Misophonia. There is currently no cure, no proven treatment nor is there a magic pill for Misophonia. Please do not allow your doctor to say, “Let’s treat your issue as this other disorder” and hand you a prescription. Frighteningly enough I have seen many physicians prescribe anxiety pills or anti-depressants. Personally I would not be comfortable having these medications prescribed by anyone other than a psychiatrist who is trained in these types of disorders. The wrong action plan for treatment may cause you more harm than good. However, it is still important that your physician be made aware that you suffer from this disorder. Provide your doctor with some articles on Misophonia and its research and take the time to explain your triggers and reactions. Perhaps someone else has mentioned the same symptoms, but the doctor did not know it was a condition. By putting a name to the disorder, you are raising awareness. Encourage them to read Misophonia International magazine and check out the website. The last several months I have been really trying to focus my efforts on raising awareness. During several explanations of Misophonia people have said, “Oh yeah, you know my husband/wife gets that way when I eat potato chips.” People DO know it is a “thing” but they may consider a quirk or a personality flaw rather than an actual disorder. Here is some food for thought: How long have you suffered with Misophonia? When did you find out that it actually has a name? How did you feel when you found out it was an actual disorder? Exactly! Can you imagine how many people are out there suffering in silence because they think they are crazy, or mean spirited? Isn’t that how you felt? Do you think it is worth it to try to explain Misophonia to someone even if they do not believe you? Even though they may not react when they hear about it, you are planting a seed so if someone else […]
Having lots of friends that have Misophonia has been an eye, and ear-opening, experience. Many times we can become egocentric through our struggles with disorders. Definitions such as “hatred of sound” try to paint us all with a broad brushstroke. In truth, we are complex and different. Each and every one of us has different triggers and experiences. The reactions are similar, this is true. It’s hard to differentiate between our fight/flight response and our aversive nature. This aside, we are different. We are unique. Most importantly, we are human. Whilst eating on skype I’m now hyper-vigilant. Some friends are triggered by chewing and others are not. Some, tapping and pens drive them crazy. For me, loud noises, chimes, and whistling become a major disturbance. These differences have taught me valuable lessons. We cannot all escape into one branding or meme of our disorder. This is why when some one insults our disorder they are not just doing injustice to each and every one of us, but to our individuality. We are not all the same and we wouldn’t want to be. Films like Jeffrey Gould’s “Quiet Please…” are a reminder that we are not just sufferers, we are people. Over the past year I have met some amazing individuals. Writers, musicians, mothers, fathers, and university students alike. Each person I have met shares their own story and difficulty. They are not defined by their disorders but by their choices. That aside, this disorder has an impact on what we can give to the world. We need to ensure that we are acting to help promote research and that we’re raising awareness. I leave you with the words of another suffer, her original article shown here: When the trigger starts, I feel my brain is searching the area to hear the sound again. Is it there? Is it not there? Do I hear something? When it does, it locks on that direction. Then it’s almost all I can hear. The expression that comes to my mind about this is “target fixation” (I got that from motorcycle riding but it fits). After that I split in two. One part of me is looking for ways to avoid the sound and the other wants to keep hearing it…it’s like a part of me wants to get annoyed… and angry… and furious. I grit my teeth and make fists with my hands. Sometimes I bang the desk in front of me (if there is a desk) before realizing I’m doing it. I want to attack the source and scream. I glance angrily, I feel… possessed. My breathing changes and I really hate the source. — Alkisti, Athens If you want to share your story you can feel free to submit here.