rTMS for Anorexia Nervosa: My Experience (Part 1: What on Earth am I doing to myself?)

During the last part of 2016 I took part in a clinical trial of rTMS for Anorexia Nervosa. Repetitive Trans Magnetic Stimulation is a process used to stimulate certain regions of the brain and has so far shown promising results in both Depression and Anxiety and now has NICE approval for these conditions. The trial I took part in was run by Kings College London and called the TIARA Study (Transcranial magnetic stimulation and Imaging in AnoRexia NervosA).

If you would like to find out more about Anorexia, this particular piece of research, and see the actual procedure being undertaken this is a video produced by the team I worked with:

Brain stimulation may reduce symptoms in Anorexia

— I will also state now to avoid any confusion, as this is a double blind experiment I have no idea whether I was actually receiving the treatment or the placebo and will find out in March when I will post a follow up blog. In the meantime I will be using the word “treatment” regardless–

I want to talk about this for several reasons.

Firstly this is a new and emerging treatment and the RCT (Randomised Control Trial, the Gold Standard in scientific research) I was part of is I believe (at the time of posting) the biggest and most comprehensive ever undertaken of its kind so from a purely academic viewpoint I (and hopefully some of you) find it an interesting experience.

science

Generic Stock Image of Science Man Doing Science Things

Secondly I want to talk about why I went through with this course of action which some might find extreme (I was acutely aware that I was consenting to something being done that could actively change my brain structure which is a lot to wrap your head around, no pun intended). Also why I ended up on this journey and what the trial and the treatment actually entailed so others who may be considering or undergoing rTMS are well informed as I personally couldn’t find many first person experiences before I started (although do look at the Reddit r/rTMS community for a fair few posts relating to Anxiety, Depression and the procedure itself).

When I started writing this blog I had hoped to fit it nicely into one single piece but as I soon realised there was quite a lot of content which fell into obvious sub categories and so this will be the first of a few blogs.

This first blog will focus on making to decision to enroll in a clinical trial for rTMS because it was a very lengthy decision and process and then I will go on to more about what the treatment actually entailed.

I will link through to other articles where I can and give more information at the bottom if necessary but do feel free to ask comments below.

Making the decision to try rTMS

Unfortunately I’ve been ill for a very long time now, in fact it’s almost 14 years (half my life) since I first received a diagnosis of Anorexia Nervosa. As much as I try and be an open book when it comes to the majority of my mental health issues Anorexia has always been something I have felt deeply uncomfortable discussing. Part of this comes from embarrassment as I feel like a painful stereotype; white, middle class, female, high achieving, perfectionist. I tick a lot of boxes.

And as someone who considers themselves a feminist it is difficult to reconcile what I say and feel about other women to the brutal and inhumane torture and taunting I subject myself and my body to, it makes me feel like a fraud although I know objectively this is not an uncommon feeling. I also feel it’s something still often seen as a vain condition that smacks of privilege (the amount of times I’ve had the idea of children in Africa starving thrown in my face as though I didn’t already know or feel guilty enough already). And as much as people say things like “well you don’t look Depressed”, for example, I don’t think any other mental health condition leads so frequently to people looking you up and down and making a snap judgment on whether you are actually ill enough to qualify for the diagnosis in their eyes.

Top tip: not everyone with Anorexia is skin and bones or wheelchair bound and frankly our society is so effed when it comes to female beauty standards I am regularly complimented on my appearance despite being dangerously underweight and seriously ill. Please don’t forget: Anorexia Nervosa has the highest mortality rate of any mental illness.

However especially over the last 18 months I have started talking more about this particular condition, in part because I didn’t have a choice; my supposedly secretive coping mechanism, my invisible illness was now in fact highly visible and undeniable.

Then there is a little part of me that does it because quite frankly I don’t have the energy to care so much about what people think. As my therapist once said to me, “don’t be alone with shame”, if I keep letting it fester it just feeds the disorder.

screenshot_20160720-184327-01

I am highly treatment resistant which probably stems from a number of things, most namely the fact I have a number of co-morbidities such as Depression, OCD and Anxiety which can all feed off and into my Anorexia.Add to that a lot of turmoil in recent years and you have a big problem. I have spent the majority of the last 14 years of my life, since diagnosis, in and out of treatment. Somehow (and this always seems to shock people who know the breadth and depth of my illness) I have always managed to worm my way out of hospital admissions but I have seen just about every outpatient professional under the sun and tried over 20 medications, multiple types of therapy, mindfulness, peer support, yoga, tai chi, acupuncture..the list feels endless. Although I have learned something new, something about myself or found a previously unknown skill or tool from every intervention I have tried I am still ill. In fact this past 12 months has seen me reach and breach my previous rock bottom and left me absolutely desperate.

So desperation is obviously, on it’s own, a bad starting point when attempting to make a major decision about one’s health but I want to stress that this is not a decision I undertook lightly by any stretch of the imagination.

I have been keenly following news of TMS in the mental health community for several years now as it has been shown to have promising results in Depression and Anxiety. I looked into it but realised that, as at the time it was not approved by NICE (it now is for some conditions but not Eating Disorders although hopefully this will change if the evidence base is positive), it would be prohibitively expensive. I also tried to get onto several earlier clinical trials but didn’t meet the stringent criteria.

Finally, through Beat’s fantastic research participation page I found the TIARA study and then started on the process of being assessed for eligibility.

When I first started seriously considering trying rTMS I was under the care of a Community Eating Disorder team and I spent a long time discussing with both my therapist and psychiatrist, what doing the treatment would mean and they helped me work through some of the decision making process. In the end I decided that it was ultimately worth trying as I was making some progress in treatment but it was slow and not being reflected in my weight or physical health.

Unfortunately by the time I got into the trial and the start date approached I had been discharged from services as mentioned in my previous blog post and so I found myself in the somewhat daunting position of starting the trial without my usual professional back up to guide me through what would be quite an intense three weeks of 18 sessions at The Institute of Psychiatry, Psychology and Neuroscience.

 

In part two: The unexpectedly long and arduous process of enrolling in a clinical trial including such rants as “why is it so difficult to get hold of your own medical records” and “I wish my brain could deal with things logically instead of throwing a massive hissy fit”.

 

Week Two: Eating Disorders Awareness Week

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The second week of February, well from the 11th to today, the 17th of February it has been the annual Eating Disorders Awareness Week.

Every year i am blown away by the amount of support and awareness raising that goes on during this week, especially by Beat the eating disorders charity.

And this year was no different with both their “Sock it to Eating Disorders” and “Everybody knows somebody” campaigns which both received a lot of high profile support and attention.

Some things i absolutely must mention..

My wonderful friend and London VIR for YoungMinds Amy-Louise posted this inspirational video. Amy-Louise reached out to the online community and asked them to send her their videos and the result is both heartwarming and heart breaking in equal measures.

You can also visit her blog and Youtube channel to see more of the wonderful work that she does.

There were also some amazing blogs this week on YoungMinds website from young people and their families on the themes of Eating Disorders and Recovery. Please remember that all blogs of this nature can be triggering if you are struggling and should be watched only if you are feeling up to it.

And i know this is a bit of a selfish and silly one but i was incredibly excited that i was re-tweeted by Stephen Fry even if it did involve airing his dirty laundry!:

Stephen Fry retweets WellHappy!

Stephen Fry retweets WellHappy!

 

There was also a groundbreaking debate on Eating Disorders held in Parliament on Friday and chaired by Caroline Noakes MP, Head of the APPG on Body Image and a vocal campaigner for change and awareness. I have started talking to her over Twitter and am hoping to meet with her soon.

I will be posting more specifically about this debate in a blog coming soon. Watch this space!

Remember, it’s almost Eating Disorders Awareness Week!

beat eating disorders

Tomorrow is the start of the annual Eating Disorders Awareness Week. I have been looking forward to it because i know what an amazing job people like the Beat Ambassadors  taking the stage they have been given to tell us their stories, to show their campaigns, raise awareness and fight some of the terrible misconceptions about these dangerous disorders.

This year the leading UK Eating Disorder charity Beat are asking us to “Sock it to Eating Disorders!” and i know i will be!

To find out how you can get involved check out Beats helpful page here where you can find out more on how to celebrate and raise money for a great cause. You can also talk to other sufferers and carers on their great message boards and even attend events which you can find here.

You can also Follow Beat on Twitter  

As well as these people on Twitter:

Me: I will be tweeting a lot during EDAW13 mostly with my service user hat on here

The big London mental health project i am currently working on which will be tweeting about London Eating Disorder Services, resources and more here :

The absolutely wonderful VIK Project:

And of course  YoungMindsUK

EDAW 12 Roundup

Eating Disorder Awareness Week 2012 Roundup

*WARNING* Some of these posts may potentially be a bit triggering due to their subject matter. Please make sure that you are safe while reading.

Last week was Eating Disorder Awareness Week so ithought i would share with you all some of the fantastic blogs and news stories that i’ve seen in case you’ve missed any of them. There has once again been such an amazing outpouring of support, knowledge and activism from all over the world from service users, professionals and other people, such as parents, who have been affected by eating disorders.

I’m going to focus mainly on the work that Beat and their ambassadors have done because they do so much to raise the profile of eating disorders in this country and do have a strong focus on young people so i thought it might be more relevant for readers here at the VIK site. Their theme for this year’s events has been:

“Breaking the Silence”.

http://www.b-eat.co.uk/
So firstly Beat as an organisation have put out a lot of information and resources this week as well as holding a Beat parade in London on Saturday 25th February.

Some of their ambassadors have also been talking about EDs including Olivia talking to Real Radio here:

http://www.realradioyorkshire.co.uk/news-sport/no-more-silence-over-eating-disorders/m63zrpll/

Ilona Burton, one of my personal favourite bloggers has written a series of articles this week on the subject too:

http://blogs.independent.co.uk/2012/02/20/break-the-silence-beat-eating-disorders/

http://blogs.independent.co.uk/2012/02/21/%E2%80%9Ci-think-i-have-an-eating-disorder%E2%80%9D/

http://blogs.independent.co.uk/2012/02/22/access-denied-eating-disorder-treatments/

http://blogs.independent.co.uk/2012/02/23/eating-disorders-the-blame-game/

Splash FM also covered the subject, talking to a therapist who says that GPs often do not know enough about eating disorders and so fail to pick up on patients who are ill:

http://www.splashfm.com/splashstory.asp?id=4796

And also, just so you know the UK’s EDAW is over but our American counterpart’s is still in full swing. For more information on this visit NEDAs website:

http://www.nationaleatingdisorders.org/

First published 1st March 2012:

http://www.vik.org.uk/2012/03/01/edaw12-roundup/

Continuing on the schools theme (tw)

Beat’s “PSHE: Managing challenging conditions” conference.
City University, London.

On the 31st of March after a ridiculously busy month of training, conferences and consultations i attended the last conference for the near future with Roger Catchpole, our training and development manager at YoungMinds.

The conference was organised by Beat, the UK’s leading eating disorder charity, and titled “PSHE: Managing challenging conditions”. It set out to look at mental health issues faced by young people in education and how to manage these conditions and help pupils and was open to educators and clinicians.

Unfortunately neither me or Roger could attend the morning or early afternoon part of the session but looking over the print outs for some of the other speaker’s presentations it looks like some amazing ground was covered on a diverse range of mental health problems in relation to young people.

Roger spoke about what role schools play and what their boundaries are as it’s often difficult for schools to know what to do when they have an unwell pupil..a lot of the time they tend to panic and this is not helped by very little mental health training and education in schools both for the teachers and the other pupils.

I also spoke about my experiences of school and i thought i would post up what i said as i think it’s very relevant to a lot of recent posts about school experiences.

So here it goes!

PLEASE NOTE: Some of this may be potentially triggering so please take care of yourself while reading.

My schooldays are quite a way behind me now (i turn 22 soon and left at 18), but what do i remember about being a mentally ill pupil?

Well i remember what it was like before and the stark contrast between that time and after i got “sick”. I was a good student, rarely late, always conscientious. I cared so much about what my teachers and parents thought about me and felt absolutely crushed when i did something wrong. I was definitely verging on a perfectionist and was always prone to anxiety but i had a good group of friends, i managed and life was good.

And then the depression and anorexia got their grip on me around the age of 13-14 and exacerbated issues i had always had; OCD, Anxiety and insomnia; it became overwhelming and things began to spiral downwards at a rate of knots.

I remember sleeping through lessons and turning up to others looking and feeling like a zombie. I remember not eating, self harming in the school toilets and pulling my hair out in class and wearing long sleeves all year around.. Going home at lunch to avoid people and becoming more withdrawn by the day.

And feeling alone.

I remember that the most. The isolation of it all, feeling like everyone else was going about their normal lives whilst i fell apart in the corner.

My school, when they found out, did what they could but what they did was not always helpful. I don’t blame them though. They had no support to support me and i imagine having such a good and supposedly “normal” student going so far off the rails was bewildering for them.

I’ll start with what didn’t work so we can end on a more positive note.

What didn’t help was their panicking. At points they felt they couldn’t cope with me so i wasn’t allowed to come to school. This felt like a punishment and was damaging at a time when i needed to retain some semblance of normality; some kind of structure to my day and a chance to interact with other people and see my friends.

When i was allowed in school having an SEN assistant follow me around from class to class (not subtly either) to make sure i didn’t abscond or do something to myself-and forcing me to spend all of my break and lunchtimes in the tiny SEN office made me feel like a freak. I couldn’t pretend i was normal anymore, everyone, pupils and teachers alike, knew that something wasn’t right. All this did was make me even more painfully aware that i was “different”.

We also never learnt anything about mental health or illness in school, it just wasn’t a subject that was ever broached. It, of course, came up when i did A level Psychology but that was to be expected and it felt like too little too late and in the wrong context. We focused on specific mental illnesses and it would have been so helpful to have something much earlier in my school career about mental health and emotional wellbeing and something, anything, to reduce the stigma of mental ill health.

The only time mental health was raised was by classmates making jokes about “nutters” and “the men in white coats coming”-not exactly things that are going to produce an environment where it is seen as OK to talk or to turn around and say “actually i have mental health problems”. As a result i only told a couple of people what i was going through and the rest was hidden away and bottled up. I told people i missed a lot of school because of physical health problems because it seemed more socially acceptable and said i had physio for some mysterious issues 1-3 a week for two years instead of admitting i went to a CAMHS clinic for therapy.

In fact, with my local trust i recently went into a school to talk about my experiences and to dispel some myths about mental illness. I came out of it wishing there had been something similar at my school to make it feel a bit less wrong and bad to be ill and to make me feel a bit less alone in it all.

But it wasn’t all bad. I was lucky in that my form tutor was an amazing man. He was seen as quite intimidating by a lot of people, ex-army turned PE and Maths teacher and i wouldn’t have liked to get on the wrong side of him. But we clicked and when he found out about what i was going through he told me he had a long history of depression. And although he didn’t have any kind of mental health training he understood and he took me under his wing and looked out for me. I am eternally grateful for the care and compassion he showed me. He didn’t treat me differently or draw attention to what was going on but he was there and a friendly face in the crowd.

I think the most important thing for schools is not to panic-it doesn’t help you and it certainly doesn’t help us as young people, especially as we are often confused, scared and overwhelmed enough. Mental illness at school is common. I wasn’t alone in what i was going through (hell the statistics say that 3 pupils in every classroom have a diagnosable mental health problem) but i was made to feel like i was. Since leaving school and becoming more open about what i’ve been through i’ve found that a lot of ex-schoolmates had similar issues and i just wish we had known and been able to talk about it and support each other at the time, i think it could have helped.

First published 4th April 2011:

http://www.vik.org.uk/2011/04/06/continuing-on-the-schools-theme-tw/