Misophonia and Me

Misophonia is a term (first coined in 2003 by Pawel J. Jastreboff, Margaret M. Jastreboff 1) given to describe a relatively unexplored condition that causes a person to experience an involuntary fight of flight reaction to innocuous repetitive, unpredictable, sounds and in some cases small repetitive movements. This immediate autonomic arousal is described by those with the condition as being akin to intense anger, panic and anxiety. Often it affects their ability to complete every day tasks and stops them from engaging in normal and healthy social interactions. (Edelstein et al. 20132) The types of sound that most typically ‘trigger’ this reaction in misophonic patients are eating sounds, breathing sounds, nasal and sniffing sounds, coughing, tapping, clicking and whistling or humming.

Due to the nature of these ‘trigger’ sounds, it is extremely difficult for a person with misophonia to avoid coming in to contact with them in their every day life. As such they might withdraw from social activities, eat in isolation, avoid public transport and face difficulties in their work place.

It is not conjecture to suppose that people who suffer with this condition over a number of years may begin to develop other psychological issues ranging from social anxiety disorder to depression, although further research would be needed to verify this suggestion.

There currently exist only two peer reviewed papers that focus on this condition. The first was published in January this year by a group of Dutch researchers who’s area of expertise was OCD and other psychiatric disorders. They outline the condition based on 42 participants who were referred to or got in contact with their clinic. (Schro, Vulink & Denys, 2013 3.)

They propose that the condition be treated as a discrete psychiatric disorder as it has unique qualities, which mean that none of the symptoms of misophonia can be classified in the current DSM-IV (DSM-V) or ICD-10 systems. In their paper they also outline a diagnostic criteria that might be implemented in the future to help with diagnosis and encourage further research.

Whilst we welcome this study and it’s identification of Misophonia as a separate condition that does not share it’s qualities with other more readily diagnosed disorders, it should be noted that the focus on the condition being psychiatric does not mean that it has not got a neurological cause.

The more recent study by Edelstein et al. 20132, which I refer too most often as ‘San Diego’ paper, can be seen to be a more neurological and physiological investigation. In this study they looked at misophonia with comparisons to another neurological phenomena called ‘synethesia’, which is a condition where a certain stimulus, either visual or auditory causes an incongruent sensory reaction from what is normally expected from such inputs. For a basic example synesthetes might see a color when they hear a particular word or see a certain number.  The suggestion being that the sensory misdirection present in synethesia might be comparable to that in misophonia. They were able to identify statistically significant differences in stress responses (measured by SCR, skin conductivity response, a bit like a lie detector test)  between misophonic patients, synesthetes and ‘normal’ control subjects in their physiological reaction to trigger sounds and visual triggers. Importantly this means that they have provided the first evidence to support the severity of the condition beyond the anecdotal evidence that already exists. (For more details please find a link to their study at the end of this post).

Whilst it is very important to aknowledge how great it is that this work is being conducted and that misophonia is slowing gaining recognition in the scientific community, what remains a concern to me is that the anecdotal evidence suggests that this condition is not very responsive to popular treatment methods such as CBT, and in some cases the has caused peoples reactions to become more intense and even increases the number of ‘trigger’ sounds. Often people are being prescribed anti anxiety drugs to help combat the response to triggers but these also seem to be having limited success amongst patients who have sought help. The only methods of ‘treating’ the condition that seem to offer relief come from avoidance techniques, or using headphones to block out the sounds, which ultimately might lead to more damage than good. Internet forums are a buzz with information and reports of less well known therapies being of some help to them, such as neuro-feedback and schema retraining. Time and greater levels of research will be needed to verify or find suitable treatment options.

I think at this point it is import to be clear about exactly how severe these reactions are so that there is not the common misunderstanding that those with misophonia simply find these sounds ‘annoying’. I can not think of a feeling that is further removed from ‘annoyance’ as my reaction to these ‘trigger’ sounds is. It’s fair to say that everyone gets irritated to some degree with a ‘noisy’ eater or that person at the cinema who just won’t stop rustling their popcorn as they moronically shovel it into their mouths without taking their eyes off the screen ahead. Misophonia is not that feeling.

A misophonic reaction is so strong and so instantaneous that, honestly, the only other emotion I can compare it to is that moment when someone tells you that a person you love has died. That gut wrenching, heart stopping, shortness of breath feeling, that you can not possibly control or stop from occurring. This is how intense the reaction to hearing a trigger sound can be. However, instead of that hollow grief that comes from such news, it is instead a burning anger, a completely alien level of rage. I am not a violent person (if you exclude the tantrums I had as a very small child) and I would never dream of hitting a person or causing them harm, but a trigger will make me want to lash out, my cognitive processes go from perfectly normal to phrases such as ‘I wish you’d just die’ or ‘why the hell are you making that noise, I’ll make you stop’… along with some often very violent imagery. There is nothing normal about this at all, and I can’t express enough how this is not just ‘being annoyed’ at someone eating rudely or loudly. Quite often the way in which a person is eating or the volume level has no significant impact at all on whether a trigger is better or worse. Though I would never actually hit anyone, I have to employ ‘coping’ mechanisms to deal with hearing these noises. My first response is often to try to leave the room if I can (this can lead to some very annoying train journeys where I have been known to move carriages 7 times in a half hour journey, or being incredibly rude at family dinners – Christmas time being the worst of course). Or I have to mimic the person eating, pretending to chew when they do (but this often just makes me look a little crazy so over the years I have tried to stop doing this if I can help it). I have tried humming to myself, or clicking my fingers to try and distract myself from the noise. But inevitably the aftermath of any of these attempts to lessen my reaction of ‘fight or flight’ is of course immense feelings of shame, guilt and embarrassment.

The reactions individuals report tend to be more intense depending on their physical situation and emotional state. For example being in an enclosed space, such as on public transport or a lift where there is no easy escape heightens the reaction. (This makes sense if considering the reaction to be fight or flight). Unsurprisingly being stressed or tired also is reported to make the reactions worse, either more intense or more likely to happen.

What concerns me most of all is that it appears that over time trigger sounds spread. Looking at the hundreds of posts written on the facebook site people say their reactions typically starting between the ages of 8-13, and initially were isolated to one particular individual being a ‘trigger’ (usually a close family member) before becoming more widely applied to close friends, extended family, work colleagues and then strangers. They might also begin as being eating sounds or breathing sounds but overtime it appears many people find their triggers extend to noises such as keyboards typing, pens clicking, packets rustling, dogs barking and whistling. There are people who have had misophonia for over 40 years and yet no one has ever been able to help them with their condition.

What is clear is that this is a condition that affects hundreds of people, social media sites and support groups are seen to have over 1000 members and the UK misophonia website has had over 100,000 hits. Little is understood about it’s origin, prognosis or treatment options and there is essentially a whole condition waiting to be uncovered.

It is my ambition to be the person to study this condition, to uncover it’s secrets and hopefully work towards finding a successful treatment plan for those who have suffered with it for longer than I have. If the doctors can’t help me, I will help myself and all the others too.

 

1.Pawel J. Jastreboff, Margaret M. Jastreboff (April 2003). “Tinnitis retraining therapy for patients with tinnitus and decreased sound tolerance”. Otolaryngol Clin. 36(2): 321–36.

2. Misophonia:physiological investigations and case descriptions Miren Edelstein, David Brang, Romke Rouw and Vilayanur S.Ramachandran Frontiers in Human Neuroscience June 2013 | Volume 7 | Article 296

3. Misophonia: Diagnostic Criteria for a New Psychiatric Disorder. Arjan Schroder, Nienke Vulink and Damiaan Deny* PLOS ONE | January 2013 | Volume 8 | Issue 1 | e54706

If you are a researcher who is particularly interested in this topic I would be very keen to hear from you. I have a background in Psychology and a MSc in Neuroscience and want to study misophonia as part of a PhD project, preferably starting in 2014 and based in the UK. I am currently actively seeking a potential supervisor for such a project and can be contacted at oggie114@hotmail.com

Advertisements

23 Comments

Filed under Comment, Misophonia, Personal

23 responses to “Misophonia and Me

  1. Tania

    I was so happy that I found out there is a name for what has plagued me all of these years. I am finding that even when I explain that this is a “real” condition, people who know about my “reactions” to certain sounds, still look at me like I am just over-reacting to such triggers.

    I find this “disorder” fascinating and would love to see or possibly even be involved in the research to find treatments and causes for all of us who suffer with this torture. I wish you luck in your quest for research partners. Hopefully there is a neurologist out there who finds this an interesting issue.
    Thank You for your passion

  2. I too have suffered for an estimated 25 years from misophonia. I was overjoyed when I discovered it had a name, some recognition and certainly relieved that I am not the only one out there. Pertaining to the levels I range from a 4 to a ten. It consumes my life, had led me to isolate myself for the majority of my exsisience and has been a large contributor to two decades of alcohol and drug abuse. I am desperate for effective treatment and would go to the moon and back to ever be involved in research that may lead us to treatment or a CURE!! I am 49 day clean and sober and miso has intensified considerably. I wish you luck in this research and will pray to God everyday we get somewhere soon, eventually..sometime!!! Thank you for what you are doing.

  3. Adah

    Wow. Extremely well done. Thank you for your good work.

  4. Excellent. I wish you the very best of luck with this project! I’ve suffered with misophonia since I was about 8 or 9 years old, and it would be completely life-altering if I could find effective treatment. I sound like a classic case really – mine has worsened over the years and developed in exactly the way you describe in your blog. I’m not sure whether that’s comforting or scary?! I’m quite excited that you’re based in the UK, too. Let me know if you need any case studies! 😉

  5. Ann

    Thank you so much – you have just described me so well you could have been reading my mind! Even the start and progression of the condition describes me exactly. I just thought I was “mad”, now I know even if I am I’m not the only one!

  6. I will second what the other commentors have said. Thanks for giving a name to what feels like a true part of my physical nature. I am lucky enough, if you will, that my misophonia has stayed at manageable levels. I especially have a lot of trouble in the car–if it’s not a buzzing or rattling noise from the glove compartment or the trunk, it’s my partner crumpling up his candy wrapper–and as you note, I can’t get away in the situation, so it becomes more insistent. I cannot allow ticking clocks in my home, and no one who lives with me can own a watch with hands–they keep me awake at night. Waiting rooms are another place fraught with potential stress. I will also second the offers to help and/or participate in any research you undertake. It’s just so gratifying to hear that this is not just me being “hypersensitive” or “fussy”!

  7. Sarah Roberts

    After 39 years of this someone finally describes me to a tee. All of us with this seem to have spent years suffering alone thinking we’re unique and strange when in fact there’s a whole bunch of us with amazingly similar triggers, history and symptoms. Hurrah for anyone who can eventually find an effective treatment, or even in the first instance to make it more widely known about and accepted. I’m presently in the position that a work colleague deliberately makes one of my trigger noises because she doesn’t believe me, and it makes life at work an utter misery on occasions.

  8. Helen Rowles

    This is a brilliant piece of writing describing a very challenging condition.

  9. Jen

    Thank you for researching Misophonia. Just to add, I do believe it has a genetic component. My sister and I both suffer from this affliction as does one of my children – my young son. His first trigger was his sister at age 3 -4 years old. I pray someone will find some success in treatment. It keeps me up at night, worrying about him and how he is going to continue school. Godspeed to you and nothing but the best wishes for success.

    • Anonymous

      Are you triggered by your kids?
      Have been wondering about this, as my partner has miso.

      • I don’t have kids but know of many people with this who say children under a certain age don’t bother them. I spent the day with a friend and her 1 year old and 3 year old which was fine. My sister who’s 24 has cerebral palsy and has to suck on her food more than chew, she never used to trigger me but recently she has been, especially when she drinks tea. Sorry I can’t be of more help. There are several Facebook support groups about misophonia where you might find some good advice if it becomes a problem for him.

  10. John Flatiron

    Yup. Please help.

  11. ALANA BELL

    After reading your interesting blog I still don’t know how bad I am and if I truly have Misphonia or a combination of Misphonia and depression. If I am in a conference and I hear a pen clicker I can not help myself and have to turn around and tell them could they please stop, same with people talking while the presenter is talking. I don’t think I want to hit them, just scream at them to please stop. My boss slurps his coffee and I want to be sick. My mother eats her chips at a restaurant with her fingers and I think how disgusting. Eating their sandwiches and I can hear every mouthful because they are eating with their mouth option. Maybe I am just suffering from really bad depression as these things do not annoy other people. But I think it is just bad manners. I even have a problem with obese people and I don’t get excited when there are these shows on television called the biggest looser. I believe they shouldn’t have ended up that way in the first place. I am so over people and their rudeness and lack of manners these days, I am becoming socially reclusive and would prefer to stay at home. Especially going to the movies or catching public transport. What do you think, Misphonia or just plain depressive OCD disorder.

    • I think you are certainly showing symptoms of misophonia. Unfortunately due to the lack of academic study into the ‘disorder’ there are no strict criteria that people need to fit with so that you can say for certain you have misophonia. I believe there are varying degrees and intensities of the condition, I also believe that it could coincide with or cause depression which might make certain symptoms worse. There is so much left to discover about it that all these questions are currently unanswerable, but I hope with time we will be able to quantify it all and find solutions if not cures. I hope that you’re life doesn’t continue to be affected by this. I can only suggest joining the Facebook group that focuses on coping solutions for support and to try some of the suggestions people put forward there in order to offer some relief.

  12. Katherine Spencer

    I have suffered from misophonia for over 50 years and have only known the name of it for a little over a year. I remember my mother and her boyfriend, a scientist, having a disagreement about it when I was about 10 years old. It has only gotten worse over time, as the triggers increase. I have recently realized how detrimental it has been to all of my relationships. I do not know anyone in my family who has it. I can say I hate it, I hate that I cannot control it, I cannot control my reactions to the triggers even if the sounds are coming from my loved ones. They do not understand. Even telling them there is a name for it doesn’t convince anyone that I am not being a horrible, crabby, miserable person. I wish you every success in finding an avenue for research. Thank you for the article and the references.

  13. Rachel Demers

    I am still young (18) and distinctly remember noticing how noises started bothered me starting around 7th grade. Since then my “triggers” have spread to almost every human made sound and the original noises (sniffling mostly) have gotten so so much worse. In order to get through high school I had to wear ear plugs every day at school and that took care of a majority of the background noises (i also used my hair to block movements that bothered me). it drives me crazy to hear every single person around me breath and eat and i can hear everyone swallow at the dinner table and it disgusts me so much (when my mother whistles or when metal spoons grate against teeth it feels physically painful).
    i took a hearing test to see if i was just oversensitive and i was found to have above average hearing and i completely lack the ability to drown out external noises. even if there are other sounds that dont bother me happening in a room if a trigger is near i only hear that noise until i have to leave. my brain just unconsciously locks onto the only sound that bothers me no matter how hard i try to ignore it.
    Due to the fact that my current roommate breaths loudly in her sleep i have become practically nocturnal so that i dont have to sleep at the same times as her, sometimes it keeps me from sleeping all together and i have been forced to pull between 2-3 all nighters a week to stay away from her.
    i also find that small movements like when people play with pens in class drive me completely to distraction and i cannot help myself but zero in on the movements.
    The list of triggers in the above article was short and i was wondering if these nosies fit into the disorder as these are noises that drive me up the wall:
    – sniffling (i now always carry tissues with me to give to anyone with a sniffle)
    – humming
    – whistling
    – coughing
    – snoring
    – breathing with mouth open
    – nose whistle (my father has an eternal one and it makes me wish he didnt have a nose)
    – chewing (especially with mouth open or anything that crunches)
    – swallowing
    – tapping on keyboards
    – slurping liquids or noodles
    – tapping fingers on tables or really any surface
    – singing along to songs
    – metal utensils against teeth and plates
    – bags (like chip bags) being rustled
    – clearing throat
    – when my dog licks her paws or anything
    – smacking/popping gum (this makes me want to rip the mouth out of the person making the noise and i usually end up running away to another room out of fear of me doing something)
    – hearing music from other people’s earplugs or through a wall
    – pencils squeaking against paper
    – static in the radio or tv
    – people saying repetitive things like “right?” at the end of every other sentence.
    – nails tapping on phones or keyboards
    – feet tapping along to music especially if they are a little off beat
    – the high pitch noise squeeze water bottles make when the air goes back in after its been squeezed

    i would love to be tested to see if i actually do have this because i have always thought it was some sort of OCD and ADHD combination. i was instantly intrigued by this because the description sounded so familiar and the list of triggers fits me so perfectly. I am tired of constantly getting mad at people for making noises i know they do unconsciously (although i have met people who will make the noises on purpose to drive me insane simply because they know it bothers me). my parents know how the noises bother me and they dont even care, they just think im being oversensitive and try to make me used to the noises by continuing to do them constantly when i am around. its made me not want to be around my family because it hurts so much inside my mind and they wont even listen. i even piss myself off when im sick or when i eat if i listen to myself.
    what does the diagnosis require and how can i get in contact with someone testing? other than earplugs and avoiding people what can be done? are there any medications to deaden the senses?

    • Sorry to hear you clearly suffer from misophonia, unfortunately there is currently no test available to diagnose people. The best you can do is self diagnosis but then even more depressingly there aren’t any known treatments that can be offered. Most people use the tactics you’ve mentioned, avoidance and ear plugs. Best I can offer is checking out the misophonia association group and related support groups on Facebook, I’ve found having others like me has been a great relief, also there is one group called coping and solutions which may have members who live near by and know of local doctors who might have helped in some way.
      It’s going to be a long time before official diagnosis and treatments exist as the condition is literally only just being studied scientifically, and not in the way you’d expect- these studies focus on how misophonia can be used to further understanding of sound processing or other existing conditions.. This means that there aren’t really any studies that look specifically at the condition on its own. I’m hoping to start a PhD that will lead to the type of research that is needed but I think realistically it could take another 10 year’s before any real help/understanding is being offered. But hope is out there. At least we know it is real, it seems to have a neurological origin and there are more people who have it than many expect , all this is positive news in terms of promoting future research.

      In regard to your room mate and sleeping I would suggest listening to the radio through headphones as you drift off to sleep, taking a mild over the counter sleeping tablet, or if this is a college doorm speak to someone about your condition and see if you could be moved to a room alone. Sorry I can’t be more help 😦

  14. Barbara

    Thank you for this article. Please keep me in mind if you need affected subjects for your research. I will be trying neuro feedback in January.

    Thank you!

  15. Jane

    You may want to look at auditory neuroscience labs doing evoked potential/(f)MRI work relating to tinnitus. They may also have tangential interest in misophonia and would be happy to supervise such a project.

    http://www.tinnitusresearch.org/

    • Thank you Jane. Tinnitus research one of my lines of enquiry though I’m currently pursuing neuroimaging centres for research project ideas as well. Keeping all options open though. 🙂

      • Miso soup 77

        Hi Olana,
        Thanks for such a great and informative article. I have suffered from misophonia for nearly 30 years . I have a 5 month old son and am terrified that he may one day trigger me and that my reaction may hurt him emotionally ( i know i would never hurt him physically though). At the moment he does not trigger me at all and I know this is common: as a result I wonder if a useful avenue of research might be why certain people (eg babies) don’t tend to trigger misophonia until much later : is there therefore an ‘off’ switch that occurs in the misophonia sufferer’s brain in certain situations? Could that be harnessed or the response generalized? A possible avenue of treatment…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s