Article today in the Guardian supplement. Nicely written and beautifully dealt with, a very personal and sad story of one individual with Misophonia. These individual stories are what encourage me to work towards a research carer, focusing on helping people with this condition. I do this for everyone affected by misophonia, not just for those who suffer with this condition.
One of the most comprehensive and sympathetic news stories about misophonia I’ve yet come across. Well worth a read.
This will be aired today (August 6th) at 4pm and will be available on BBC iPlayer afterwards.
Dr Kumar, Guy Fitzmaurice and myself were interviewed for our own personal and professional experiences of Misophonia.
The podcast is available to download here:
Clarification for once you’ve had a listen.
The little quip about having sympathy for myself and Guy, but I work in a cake shop….
I actually work in a Delicatessen (for many complicated reasons and events based both on the difficulties faced finding what would be deemed a ‘proper’ job (by others peoples standards) after university, and the limitations I face when it comes to working in particular environments, such as enclosed office spaces with KEYBOARDS and LOTS OF PEOPLE who eat at their desks all day long, but I mostly work in the Deli because I love it, and the people I work for are like my extended family)
Aside from this, as I pointed out in the interview, no one actually eats in the deli, yes I sell food to people but it is a take away service. You don’t often see people eating the food they buy in sainsburys or tescos do you, particularly if it’s not even been paid for at the checkout?
In short, by being around food that can’t be eaten, with the constant humming and cluttering sounds from our big industrial fridges I feel much safer than I would feel in an office environment or another such place with many collegues who could possibly trigger me and I’d have no escape. I had one such job only last year and I had to quit after four months because my boss and collegue who shared the office at their lunches at their desks and always had crisps. It became unbearable and I was struggling to even find the motivation to go into work towards to end.
It is just another example of how complex this condition can be, it is not simply ‘hearing eating noises pisses me off’… this view is flippant, and potentially damaging for the future of misophonia and for those who suffer from it, and I will do what I can to irradicate this notion from the public interpretation of this potentially serious and life affecting disorder. Thank you.
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.
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
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 email@example.com
Read this the other day and it made me giggle, for anyone with interest/knowledge of fMRI.