rTMS for Anorexia Nervosa: My Experience (Part 2 – Making tough decisions)

If you need to catch up or refresh your memory you can read Part One here.

In part two of this series of blogs I will be talking about actually getting into the trial and what was going through my mind during what turned out to be quite a long process. I do this partly for selfish reasons – I find writing cathartic, it helps me to make sense of my experiences and quiet my racing mind.

I hope that it might give researchers or anyone working or living with someone with Anorexia or any Eating Disorder, an insight into some of the thoughts that might be going through our minds when we start, or even just consider entering ANY treatment.

Finally I want people weighing up treatment options to know it is OK, in fact it’s normal to have mixed opinions, to feel pulled in different directions and to not only have doubts but to talk about them.

Enrolling in a Clinical Trial

Enrolling in the clinical trial first started with working out if I was eligible to take part in the first place. Research trials often have to have strict criteria otherwise results can be easily skewed. For the TIARA study I had to fill out a number of assessment forms, not unlike the ones you are given entering any mental health service.

There were a lot of questionnaires about my Anorexia, other health conditions and my history of service use as well as the usual demographic questions. On top of this, because part of the study included a number of MRI scans, I had to do a questionnaire to make sure it was safe for me to have the scans (after all it’s a bloody massive magnet so you really want to make sure there isn’t even the smallest fragment of metal in your body).

affinity-mri-closed-mri-scan

MRIs – big scary magnet machines that are surprisingly easy to fall asleep in

My God it’s like dealing with Vogons sometimes and I ended up having to go through the whole process twice in the end to find the absolute exact piece of information needed which ended up being exactly what we’d expected all along anyway. Oh and I paid for the privilege of finding this one piece of information about my own body, fabulous.

Sorry for the (admittedly ever present sarcasm) but when you’re a health tech geek and you know personal Electronic Health Records could be amazing and save so much stress and time it can be a tad frustrating.

vogon

Ok maybe the Vogon reference is a bit much but it’s certainly not a process I wish to repeat any time soon

Thankfully I was eventually given full medical clearance and we were off.

Pre-Treatment Concerns and Musings

Having spent six months attempting to get into the trial and banging my head against various bureaucratic walls along the way I hadn’t really let myself get excited or believe that it would actually happen. At several points I seriously contemplated giving up trying but was spurred on by the knowledge that it was the only way to try this treatment. Or any treatment for that matter as, bizarrely, after being discharged from services I’d been promised that, should I get into the trial, I would be given several outpatient sessions to support me – which didn’t actually materialise until after the trial had ended.

All of a sudden I had less than two weeks until my start date which would be a full on day of assessments, an MRI and my first session of rTMS. The new regime, going from being mostly sedentary for almost a year and hiding from the world – to commuting again every day and the energy it would use up was daunting.

I will hold my hands up to being a pretty damn anxious, highly strung and controlled person. I like to take my time to think about things before rushing in and this was something that it felt like I needed way more time to properly process before I could start. But I pushed myself out of my comfort zone because it felt “now or never” (it actually wasn’t, I could have pushed the start date back to January but after waiting so long I didn’t feel I could any longer) but that’s how much brain works, and I use the term “works” loosely.

I also figured I couldn’t possibly comprehend what I was about to undergo as it was completely unlike anything I had ever experienced before. I had watched as many videos as possible, read information pages, first person accounts.

As Ready As I Could Be

I had a LOT of conflicting thoughts, especially in the last few days before treatment started as is shown by several lengthy journal entries which allowed me to get down some of my fears and hopes.

My biggest fears were as paradoxical as my illness. I was terrified the treatment (and therefore another course of action, some hope, getting some form of routine back, being back “out in the world”) wouldn’t work.

I was equally terrified it would work and my Anorexia would be cured.

Because as horrendous and destructive as this disease is it feels safe, especially when my world hasn’t stopped shaking in some time and I feel like I am continually losing my footing. It is an insidious and disturbing constant in my life and I find it very hard to discern where I end and it begins. Truth be told I’m not exactly sure who I am without it and to face losing it – or at least to begin actively engaging in something that could result in it’s loss – was not easy to deal with.

Cue minor existential crisis

This part, typed into my phone while chain smoking and shivering in the cold, the night before the trial was due to start, stands out in particular:

I’m being handed an incredible opportunity by being able to take part in this trial. Without this study if I wanted this treatment it would cost me up to £10,000 or something ridiculous like that. Not an option when I haven’t been out of my overdraft in seven years. This is my only chance. I’m just so terrified of me (or my Anorexia, whichever one of us it is) sabotaging this. I know I am still reeling from being discharged against my will from mental health services not long ago and finding my feet on my own. Everything is so messed up at the moment too, is this really the time for this fight? I know I’ve been fighting recovery and in perpetual relapse mode. I don’t know if this treatment can work if I don’t want it to. And if that’s the case surely I shouldn’t be so selfish and stop this now, I’ll only screw up their results and then this treatment won’t get approval and people that actually deserve this treatment won’t get it..

If I put my psychology hat on it’s as clear as day looking back – I can see the major catastrophising for a start (I realise objectively obviously I’m not so important that a whole treatment could be made or broken on the results of one participant alone), a lot of black and white thinking (now or never) and a lot of guilt, shame – that I had this opportunity, whether or not I was “worthy” of it.

Of course now looking back I can see objectively that this is classic me behaviour when entering treatment and it’s played out many times before but as ever, it can be bloody difficult to see the woods for the trees when it comes to your own mental health.

When you share a body with this particular disorder for half a lifetime it knows your every weak spot and it does not hesitate to twist the knife when it sees an opportunity.

I had concerns too about how I would manage such a dramatic shift in my daily routine. I was lucky in that the trial was only 1 or 2 trains and only 90 minutes or so door which meant I only had to deal with a maximum of 4 a day (not bad for me!) and my Disabled Rail Card made costs much more manageable. However I still needed to be in London every week day for 18 sessions and an extra day for the final assessments and MRI. A few years ago that would have been nothing for me, I would have laughed at the ease when I was working full time, travelling in peak hours, commuting 4 hours a day on top of volunteering and being a carer. However a year out of work and mostly being told (and often made) to not “over-do it” my stamina has diminished considerably and even a trip a week into London can require days of recovery.

I was very aware that my devious disorder could easily use this as a perfect opportunity to ramp up it’s behaviours and pull my strings like a puppet. I would have opportunity, certainly, to over exercise and reduce my intake. My brain went back and forth trying to work out if my intentions were good, or at the very least “good enough” to do the trial.

In the end I decided to take the risk but make sure that I had back up in the form of peer support, my partner and family as well as calls with my lovely GP. I’m still not sure how well I did on this front, I know I pushed limits at point, tested waters I shouldn’t but overall I managed.

In part three: The part you’re all actually interested in – the treatment itself! Including the procedure itself, the idiosyncrasies and particulars of the trial and a few ridiculous pictures including my brain selfie.

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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”.

 

My treatment isn’t NICE (approved)

My treatment isn’t approved by NICE, The National Institute For Clinical Excellence (and that’s OK with me).

Over the last few years there has been a revolution in the way we view, commission and use mental health services in the UK. One of the biggest changes is a push towards providing purely evidence based treatment. These days if you have a product or treatment for mental health and you are trying to break into the NHS market I can guarantee that one of the very first questions you will be asked is “where is your evidence base”.
Is this enough evidence for you?

Is this enough evidence for you?

Despite the title of this blog I do mostly agree with this approach. For most of it’s history our mental health services, in terms of size, access and treatment offered, have been haphazard at best, often based on gut instinct and previous experience rather than data and scientific evidence, mostly because we don’t have enough of either. This has resulted in a landscape that is incredibly difficult to navigate, not just for service users like myself but also for families, friends, other sectors and even the clinicians and commissioners. Worst of all it has resulted in a postcode lottery of services, which if youre lucky you win but all too often means that people do not receive the best care possible..or in some cases any care at all.

As you know I have used NHS mental health services on and off for twelve years now and have experienced four distinctly different services in three geographical locations. It was only after my most recent referral to mental health services since moving back to my home town last year that I realised not only the real extent of the postcode lottery but also truly felt the personal knock on effects.

Sorry you haven't won, better luck next time.

Sorry you haven’t won, better luck next time.

To paint a picture..

When referred to my new trust I received a phone call within a week from a lovely man who immediately apologised that i would have to wait 6 weeks for an assessment. I tried to choke back laughter as he was so apologetic about a time that for me, with my previous experiences, seemed almost miraculous. After having the assessment I was immediately given a care co-ordinator (the same woman that assessed me). She once again apologised and said that it would be 3 months until I could start treatment. In the meantime I was contacted by another branch of the service who offered me 29 sessions of group therapy for 2.5 hours each week to “tide me over” until the 40 sessions of individual treatment started – probably the most treatment I’ve ever been offered by a service.

Flash back a few years and one county over I had a very different experience. I was referred to the same type of mental health team, I then spent 13 months (yes, over a year) waiting for an assessment while both my physical and mental health deteriorated. When I was finally seen i was told that they could only provide minimal support and that (direct quote) what I needed (i.e. more than 12 sessions) was “not available on the NHS at the moment”. We considered putting me on the waiting list (at least another year long) for treatment but decided against it because, due to a reorganisation in the trust they weren’t sure if the service I was waiting for would even exist by the time I got there. It felt a bit like stepping onto an escalator that you know may have nothing at the top.

But back to my initial statement, what is this non-NICE approved treatment and why don’t I care that it comes without this gold stamp of approval? Especially given my dedication to improving mental health care in this country.

Well the group therapy I recently started is called RODBT..I must admit its actually so new that even I hadn’t heard of it, and with my background that’s surprising. It stands for Radically Open Dialectical Behavioural Therapy (quite the mouthful) and is a form of What is DBT which has been developed to help people like me with chronic Depression and Anorexia. It is being used in some other countries and all early stage research is very positive however it is not far enough down the evaluation line to have the coveted NICE approval.

I’d never had group therapy before now so I really wasn’t sure what to expect and it turns out neither did the clinicians as this is the first time they have ever delivered these new sessions.
Welcome to the guinea pig club.

They stated in the first session to us all that we would have to sign a consent form to say we understood that this was NOT NICE APPROVED TREATMENT. Given what I said in the first paragraph you might have expected me to run a mile after hearing this and not sign the form, after all were told time and time again how important it is for treatment to be evidence based. In fact I was quite relived.

You see a NICE guideline may be the gold standard but because of that NICE also have to do a lot of research and be very thorough. It actually takes on average two years to rewrite a NICE guideline, let alone write one from scratch, and like randomised control trials (RCT) it may be the gold standard but it’s (by its very nature) quite removed from the realities of creating and trialling any new treatment or product. Certainly it’s a barrier we come across frequently in the digital mental health world.

Now for me as a patient, obviously I want good care, I want to have faith and confidence in the treatment I am receiving but I don’t particularly want to wait two or more years. Maybe some will see that as selfish or impatient but I’ve been ill with this particular condition for 13 years now, exactly half of my life and quite frankly I can do without another two years of the pain and suffering this disease causes. Not just to me in terms of my mental and physical health but also for the sake of my partner, my family, friends, employer and colleagues who have to deal with the fallout and pick up the pieces in the meantime.

I also don’t mind being a guinea pig, if it works then I will be ecstatic and maybe I can have a bit of my life back from the monster in my head. And if it doesn’t turn out so well then at least we tried, got some evidence and it can either be shelved or better, tweaked, so that the next group have an even more helpful experience.

So in conclusion, generally speaking evidenced based treatment is a very good thing. We need more of it. However getting more evidence bases involves conducting a lot of ongoing, extensive and time consuming research and so care cannot be put on hold during this time. We need to make sure that “evidence base” isn’t used as a barrier to buying new products or services and that people can still receive good quality care even if it doesn’t have a golden seal of approval just right yet.

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If you’d like to learn more about the move towards evidenced based treatment I’d recommend checking out the work of the Evidence Based Practice Unit (EBPU) which is run by University College London and the Anna Freud Centre.