BBC Radio 4 Word of Mouth featuring misophonia

http://www.bbc.co.uk/programmes/b037tnxm

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:

http://www.bbc.co.uk/podcasts/series/wom.mp

 

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.

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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

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Made me smile

http://www.newsbiscuit.com/2011/02/14/new-brain-scan-reveals-nothing-at-all/

Read this the other day and it made me giggle, for anyone with interest/knowledge of fMRI. 🙂

 

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Shamless Plugging on my Blog. Recommended reading.

About four years ago I proof read a book for my psychology teacher from my high school. It’s now available to download, for a very reasonably small price (it’s worth tons more, so you’re really getting a great deal buying it now!)
It’s a brilliant novel, and I’d highly recommend it to anyone who has an interest in fantasy, the afterlife, philosophy, or for those who just enjoy a good book!
Feedback about it is encouraged, I’d love to know what others think. It’s rare to read something that others haven’t and I want to be able to talk about it with like minded individuals.

http://www.amazon.co.uk/IMPS-1-ebook/dp/B005F9YG6K/ref=sr_1_1?_encoding=UTF8&s=digital-text&qid=1313009384&sr=1-1&al_rs=

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Science on the Radio (August 2011)

Listening to this on iplayer right now. Science: From Cradle to Grave. About longitudinal studies in medicine and health. It’s presented by the lovely Dr. Ben Goldacre, with his wonderful voice. 🙂

http://www.bbc.co.uk/iplayer/episode/b012wg2q/Science_From_Cradle_to_Grave/

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Learning to write with cerebral palsy and learning difficulties

My sister has cerebral palsy and additional brain damage (mostly to her right hemisphere) that has caused her to have severe learning difficulties and epilepsy. When she was adopted as a baby my mom was told she never learn to speak, let alone read or write. As she grew older the hours of speech therapy definitely paid off, and at 21 she can have as coherent a conversation as anyone (although she does sometimes need to repeat herself to people who don’t know her so well). However, whilst she has always been very chatty, her ability to read and write has wavered. I remember us being at school together (she is only a year below me in school years) and she’d be sent home with reading books aimed at 5 year olds when she was around 9 years old. It would seem as though she was learning to read quite well after you’d gone through the book a few times. She seemed able to read entire story books like Bif and Chip, if someone had gone through the book with her first, but it soon transpired that if you covered up the pictures, or made her attempt to read a randomly chosen page out of order then she was stumped. She’d memorise the books and regurgitate verbatim what someone had read out to her previously! I think this is a ‘trick’ common amongst young children learning to read, particularly because those story books are boring and repetitive.

For as long as I can remember her idea of handwritten words resembled something a 2 or 3 year old might scrawl when pretending to do “grown up writing”. A series of p’s that looked a bit like this:

With the arrival of a computer in our house it must be said that her ability to write single words did begin to develop but again she was merely mimicking what someone had shown her. It wasn’t uncommon to find a Word document saved under a name like ‘fsddh’ and open it to be faced with a list of ‘words’ such as Dog, Bog, Mog, Fog, Sog, Rog. It was a while before she began to put words together into sentences. The first one she wrote with no supervision is annoyingly burned into my memory.

It simply read: “ Olana is a fat pig”

She’d gone around the house asking different people to write down a single word from the sentence so she could copy it and put it together as a surprise.

Reading and writing has always been a part of her education, although I’d say it was never the main focus. Basic numeracy, social and ‘life’ skills were possibly the more important aspects, once she’d mastered writing her own name by hand. She still struggles with counting money but is more than capable of using a calculator for difficult sums if she needs to, she can also read time quite accurately these days.

In the past two years something rather different has happened when it comes to writing. She is now twenty one, and lives full time at an independent living centre for disabled adults, where she attends many different classes including numeracy and literacy lessons which are taught as an outreach class through the local college. In these she is slowly learning to put together her own words for the first time ever.  I think one of the most useful things she has done in conjunction with these lessons is to have joined facebook. It’s turned out to be a perfect medium for her to practice putting together full sentences. The last part of this post will be made up of direct quotes from her posts and private messages she has sent me. As you will see it is almost as if she has developed her own way of writing, whilst it may not be correct in terms of spelling and punctuation most of the time, it is still readable to those who know what to look for.

Here is the first message she ever sent:

August 2009

i ded not no nat d es on face book now

This isn’t too hard to understand if read aloud as if phonetically, it says ‘I did not know that D is on facebook now’. (D is our brother). The problem with reading out loud as if phonetically is that due to her cerebral palsy she doesn’t always pronounce words correctly, so she often spells them the way she says them, not as how they ‘should’ be said. For example a Remote Control is called a ‘remoke’ in our house.

I’ve tried looking at theories of language to find comparisons between the way my sister writes and development of reading skills but to very little avail. I have noticed that when she talks she often falls into the trap of over generalising a rule to words that are not regular. So that she will say things like ‘we drived home’ instead of ‘drove’, which is something younger children only begin to do once they start learning to read and write at school, but never did previously.

There are certain consistencies in my sisters use of language when writing that we’ve learnt to interpret (and although we have tried to correct her on these they have remained). Examples of these are things like always writing ‘Pes’ instead of ‘Please’, which makes some sense if you hear how she pronounces please in speech. The most persistent and confusing of all however is her use of  ‘ec’ instead of ‘ing’, so ‘going’ is always ‘goec’.

September 2009

i am goec to bed naw can i toc to u at 11pm pes

(I am going to bed now can I talk to you at 11pm please)

I’ve tried to work out why ‘ec’ has replaced ‘ing’ in her mind, some ideas are that when she pronounces ‘ing’ she is making a ‘cah’ or ‘kuh’ sound at the end so puts a ‘c’, or that on a keyboard capital G and C look quite similar so she’s confusing the two letters. It could even be a bit of both I suppose. If it is that she’s confusing G and C on a keyboard you would expect this confusion to occur in other words where g is replaced with c. I have found a few examples of this:

September 2009

can you pes gum up

(can you please come up)

October 2009

i am up set be gos alex hos goc naw

(I am upset because alex has gone now)

It seems that she will replace G’s with C’s when the G occurs in the middle or ending of the word, and will replace C’s with G’s if the word begins with a C. However, she does know that ‘Ch’ makes a different sound to a C on its own as is demonstrated in this example:

October 2009

i am sore fo chuteg a wa

(I am sorry for shouting at you)

Here she doesn’t stick with her usual ‘ec’ to replace ‘ing’ either. She’s made shouting into two distinct sounds created from ‘chu’ and ‘teg’, usually she never misspells ‘you’. Words ending in ‘y’ often become words ending in ‘e’ or ‘i’.. so Happy will be ‘hape’. I believe this is a common error made by young children when learning to write.

My favourite message from her was sent very early on and reads:

olana can u sop tacec the nec at of me i dot lic et won u sa i cut rit pes

(Olana can you stop taking the Mick out of me, I don’t like it when you say I can’t write, please)

I know it’s wrong that this made me laugh, but I never really took the Mick out of her (promise!)This referred to a private message she’d sent to our Mom asking her if she could get a new computer but she didn’t write the word ‘computer’ she instead wrote ‘cum pot’!  In all seriousness though, I think it’s fantastic that she’s doing as well as she is despite having suffered such severe brain damage, she continues to exceed ours and the medical professionals expectations daily.

Her ability to put together sentences is growing, although the words aren’t spelt all that well they are usually easy enough to decipher. We went to see Tim Minchin perform in December last year and her status became ‘I lic tim minchin’ (lic is like, although she probably wouldn’t say no to licking him either!) She also wrote this message on his facebook fan page:

faku tim fo a gut cho nysnat i am gated theat i cud not met you i wech you cyt ta ta am fran can you dot

(Thank you Tim for a good show last night, I am gutted that I could not meet you. I wish you could *something I don’t understand* can you do)

As you can see sometimes the messages aren’t always all too clear, and I still struggle to understand everything she writes. The problem we then have is she can’t read her own words back, whilst she has no trouble constructing her little sentences if you ask her to read what she has written say a day later she won’t be able to tell you.  Such as ‘i cum sot paec tec toc doc’ My best guess with this one is something like ‘I can’t stop playing tic tock doc?’ but I’ve no idea really.

She is also getting better at writing by hand, although her letters can still be quite big, she now spaces words out a lot clearer and will attempt capital letters where necessary.

The oddest thing about all of this I find is her comparably low ability to read despite her continued  progress in her writing skills. Her brain-damaged being mostly right-sided is consistent with the suggestion that language and writing abilities are predominantly processes controlled by the left hemisphere. However, reading is also thought to be dominantly a right-sided processes, the strangest thing here is her inability to not only read ‘proper’ sentences but also failing to read back things that she herself has written. I hope that she can continue to develop her literacy abilities as she gets older, although at 21 I’m not sure how far she can progress or what is already set in stone, I guess only time will tell but for now she’s doing just fine.

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Things in the pipeline

Hellooo there,
so even more apologies for a lack of blogging in recent months. Lifes become hectic, who’d have thought a full time job would actually take up so much time!? I do love it though, but am missing writing LOTS.
So, I have 12 days off over the christmas period, and my pre new years resolution is to write at least three blog posts that have been waiting to be written for an age.
Will endeavor to do this in amongst stuffing my face with Terry’s chocolate oranges and watching Doctor Who (all the important things about christmas time).
Merry Christmas to everyone out there!
Olaaaaana 🙂

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