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

On being a ‘Young Carer’

The BBC are running a special report in November on Young Carers in the UK and have asked people with experiences with caring to share these with them. I shared mine in three parts, as I wrote too much. It’s a sort of conscious stream of thoughts, feelings and memories so I apologise for the poor style but if you are interested here is what I wrote to them:

My name is Olana Tansley-Hancock, and was a young carer from the age of three. I am now 23, and although no longer living at home having been at University for the past four years I will never stop being a carer for my family.

Unlike most other young carers I knew when I was growing up, I had the unusual circumstance of all three of my family members having disabilities and I was the only ‘normal’ one. My mom has grand mal epilepsy, and a degenerative spinal condition, my big brother is also epileptic and in recent years has unfortunately been diagnosed with biological depression also. My little sister, Roxanne (who is adopted) has cerebral palsy, epilepsy and severe learning difficulties. At the time of her adoption I was only 3, my brothers epilepsy had just been diagnosed and was uncontrolled and my parents were still together. However, my father had begun showing signs of bipolar disorder. When I was five my parents divorced. My mom encouraged me to be involved with Roxanne’s physiotherapy and care as it was really the only time mom got to spend with me.

We moved to a new house when I was 5, and then it was just me, Mom, Dietrich and Roxy. Over the years Dietrich’s epilepsy got more and more under control. Although, I do remember some scary moments when he was having medication changes, like the time he lost his memory and tried to strangle me cause he thought I was a stranger. Or the time he got electrocuted by the electric fence in the nearby fields and he had multiple seizures so severe he had a heart attack. I was walking with him in the field on my own at the time, and had to get him home semiconscious. I was only 9. I remember watching my mom performing CPR, and apologising to the ambulance men for ‘wasting their time’ cause normally when he’d fit, a neighbour would drive Mom and D to the hospital and the ambulance man said ‘if you’d waited for a lift from a neighbour your son would have been dead’.

Mom’s fitting used to scare us all too, but we got used to the routine we had to follow when they did happen. We knew to phone the ambulance, to phone her friend to come over, and to have pain killers and a glass of water ready for when she’d come round. I knew where the medications were in the house, I knew exactly how much medication and what medication everyone of my family took to tell the ambulance men when they arrived. I knew how to put my mom, brother and sister into the recovery position, I knew how to insert rectal diazepam, I knew how to do my laundry, I knew how to cook basic dinners, I knew how to take money out of a cash machine and pay for electricity and gas, I knew how to put the coffee on in the morning for mom, I knew all of these things and more and I was only 7.

I never once envied my other ‘normal friends’ with their ‘normal families’ because to me there was nothing abnormal about my family and I still don’t see them as different.

So we didn’t have yearly family holidays off to faraway places, but instead we went on trips to London to the hospital, or to care centres and we’d always get a Burger King on the way home, and being from the Isle of Wight we didn’t have a Burger King ever! We did go on two family holidays in my childhood, both to the same place in Scotland. I have very fond memories of snow, skiing and squirrels. I believe these holidays were paid for by a charity organisation, as we stayed at a cottage that was specially equipped for the disabled.

My sister had respite care every other weekend, and my Brother got a place at a very good boarding school because he was super smart! So from the age of 11 he only came home for holidays. My sister also a few years later got a place at a specialist school for disabled children on the Mainland and she was there from the age of 11. At that time I was 12, and in a drama school on the Isle of Wight.  Just two years later my mom’s back went. She has since had 4 operations on her back and undergone many complications due to these. Whilst it was I suppose ‘easier’ once Roxy and Dietrich went to boarding school, my mom’s disability got progressively worse and worse and I was the only one left at home to look after her.  At the age of 11 I was introduced to the Young Carers Project on the Island and they’d take me out on the odd weekend to go horse riding or to the cinema.

When I was 14 I was at a private school on a scholarship on the island, my mom cleaned at the school to pay for some of my tuition that wasn’t covered by the scholarship. She did this until she ended up in hospital because of her back. During my GCSE year my sister underwent an experimental operation to readdress the weight distribution through her feet, this was initially thought to have been unsuccessful and we were told she’d never walk again. She defied the odds however after being in plaster casts for 12 weeks and spending her Easter holiday at St. Mary’s Hospital on the Isle of Wight because we didn’t have the space for her at home in a wheelchair.

I was meant to take all 10 of my GCSEs a year early but due to my caring responsibilities I fell ill in the year before my exams, I missed a crucial 3 weeks of school through exhaustion and it was decided that I should only sit 5 GCSEs early. I still achieved grades A*-B for these exams. I then changed schools for the 7^th and last time, and went to the local state school. Here I was able to take two AS levels early along with the rest of my GCSEs. Throughout all three years of being at this school my mom was in and out of hospital. I was running the house and doing to cooking, cleaning and shopping. A charity called ‘Crossroads, now Two Counties’ on the island would pick me up once a week and drive me to Tesco to do the weekly shop. I’d then be the one to do most the cooking, and would fit in my school work around everything else. I finished my high school education with Ten A*-B grade GCSEs, Four A-C grade A levels, and One B grade As Level.  I always tell my friends/teachers that being a carer gave me an unfair advantage at school when they all saw it as a disadvantage, but I was so determined to focus on something other than my family that I poured about 70% of my energies into school, the other 30% went into Irish Dancing. I had been dancing since turning 14 and it was the only thing that made me forget absolutely everything about home life. When I was dancing nothing else mattered, nothing else existed, and I was going to be good at it.

I got a place at University and chose to go to Royal Holloway as mom had been getting stronger and I felt being only an hours’ drive from Portsmouth was close enough and yet far enough away for me to feel safe about being away from home but also so that mom could regain her independence. I’d taken so much of it away over the years by doing everything for her that had I been only in Portsmouth or Southampton for Uni I really do believe neither Mom or I would have found out who we were over these past four years, relying on each other as we had done for so long.

Over the Christmas Holiday of my second year of uni my mom fell down the stairs, knocking the bone marrow cage out of place that was surrounding the base of her spine. She developed septicaemia and the infection was so aggressive that she was air lifted to Southampton General Hospital for an emergency operation on New Years Eve. I remember the phone call from the nurse at the hospital, she said ‘your Mom says to tell you to carry on with your new years plans, go out and have fun, and she’ll call you in the morning’. None of us realised how serious her condition was until the weeks that followed. She could have died that night, but thanks to the hard work and amazing dedication of the team at Southampton she was okay. She spent the next month in Southampton and I had to put my studies on hold. By mid January I’d worked out a plan that involved travelling up to uni Monday-Wednesday for essential lectures, coming home via Southampton hospital to be with mom’s dogs Wednesday evening to Sunday, the neighbours looked after the dogs on the days I was away. I didn’t know at the time but this sort of thing is called ‘extenuating circumstances’ in university speak, I didn’t ask for any extra considerations for any of the assignments I handed in during or after this time as in my opinion I wasn’t the one in hospital so why did I need special considerations.  I still came away from university with a high 2:1 in Psychology. I have spent this past year studying a MSc in Human Neuroscience and hope to do a PhD in a year or so. My interest in neuroscience comes directly from my family, all of them have disabilities that are a direct result of atypical brain functioning. It always comes back to that; the brain. I want to do more than be a physical help to my family, I want to help on a larger scale now, help fix the original problem so to speak.

The support I have had throughout my life has come from my family, they give and they take like any family. Disability has nothing to do with it. The young carers did help, but dancing helped more, finding something that was just mine was the most important thing for me. Other outside help didn’t really come into it, for example I only found out this year that as a carer you should get a free ticket at the cinema when accompanying you’re disabled sister or mom or brother. How has it taken 23 years for someone to tell me this information? Despite these silly little things, I do not feel like I have had a ‘disadvantaged’ childhood any more than someone who comes from a poorer background would have had. There is nothing ‘unusual’ about my family and I would not change a single thing about them, well maybe one thing, it’d be nice if I hadn’t been born ginger (I hear there’s no cure for that).

Anyway, back to the present day, my brother is back living at home, running his own business with help from mom, who is continuing to get stronger despite having a degenerative illness. My sister is at a development centre learning independent living skills and improving herself all the time. I visit her at least every two weeks and we hang out like any sisters in their 20s would (maybe with a little less alcohol and clubbing but still we have our own fun).

I will always care for my family, you don’t stop being a carer just because you no longer fit under the banner of ‘young carer’.  Instead you’re simply a ‘carer’, you’re under the same banner as the husbands and wives who care for their spouses who had age related illness, or the children of elderly parents caring for them, there is no longer a distinction. To be a carer at 20 is a lot tougher in terms of outside awareness than being a carer at 8 or 18.  My family are my inspiration, motivation and happiness, and I love them.

Hope that’s given some insight into things, I do get that my situation is a little unique. I can’t say I met many ‘young carers’ at University.

Hope to continue to try to understand the brain and go on to fix a few things!