rTMS for Anorexia Nervosa: My Experience (Part 3: The Trial Itself)

Part One: What on Earth am I doing to myself?

Part Two: Making Tough Decisions

A lot of you have been chasing me for Part 3 of this series of blogs. Unfortunately this has been, by far, the hardest piece for me to write – not just because it covers what the trial involved but also because of what happened in my personal life during the course of the trial. So it’s safe to say this isn’t my first attempt to get these thoughts out, the second or even the tenth.

I endeavour to do my best to separate the treatment and my personal life but, as you can imagine, the two bleed heavily into each other so please forgive me in advance.

Clinical Trial: Day One

The first day of the trial was pretty intense and I ended up taking my Dad with me to support me as the first day involved not only an MRI but several assessments as well as my first rTMS session. I probably could have done it myself but physical weakness and anxiety meant it felt safer to have support at hand. I would recommend others take someone with them as it is quite long and can be quite an exhausting experience. Dad was quite chuffed about coming along, especially as he has a background in scientific imaging and is a Kings College London Alumni. As a student he lived just across the road from where I was being treated (which meant he could revisit old haunts including his houses of residence and places him and my Mum used to go when they first met).

We arrived at the IoPP Neuroimaging department after catching a very early train – the staff I must say were absolutely lovely, all of them. After filling out more paperwork I was ushered through to an area where I could remove any and all metal items and store them and my bag in a locker.

Thankfully, to my surprise, there was no voyeuristic hospital dressing gown and I was allowed to wear my own clothes.

The people who operate the MRI were absolutely lovely, I couldn’t fault them. I wasn’t nervous but I was bloody freezing and they put pillows under me and a blanket over me to keep me warm and talked to me throughout the procedure to keep me at ease and make sure I was OK (and warm enough).

Having an MRI scan

The MRI itself was quite an experience – I had previously only witnessed them on TV and as it turns out, watching all eight series of House does not give you a realistic idea of what to expect.. who knew?

I was under the impression that they were a tad scary and made one particular noise over and over again. As it turns out MRIs make such a wide array of noises it’s almost as though they have their own language – whirring, beeping, buzzing and banging depending on where they are looking in your brain and what they are doing.

For the first part I had a couple of calibration tests followed later on by a fuller set of basic tests. I was surprised at how close I came to falling asleep during the more restful period where I didn’t have to do any tasks (admittedly throughout the whole process but especially this bit) – I had assumed sleep would be impossible in such an environment but apparently it’s quite common. Unfortunately the end was the more active part otherwise I would definitely have had a cheeky nap!

After an hour in the machine I did several basic assessments that looked at my perception of the healthiness and tastiness of various foods and then we were ready for session one.

 

The First rTMS Session – What to expect

The first session was a bit daunting but I was put at ease at every stage of the trial in fact with the absolutely lovely researchers I worked with.

Sessions started with a quick computer task which was essentially watching food videos – for me this actually the worst part of the entire trial! I realise a lot of people with Anorexia LOVE food (believe me you should see my social media feeds during Great British Bake Off). I am indifferent to food at best, repulsed at worst and so even 90 seconds of these videos a day were enough to cause my anxiety to leap and appetite to drop. This was preceded and then followed by some quick measures on how full I felt, how anxious etc.

A calibration test was done for the machines to try and work out where a specific itsy-bitsy part of my brain was (the motor cortex). This is not always an easy task and the researchers explained that it can take many attempts to find it and even then sometimes you just don’t.

This calibration happened on a weekly basis and it was interesting that some weeks it was easy to find and others were like looking for a needle in a neurological haystack!

Check out my beautiful brain!

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This is what I have started referring to as my “brain selfie”!

This test is done to make sure that the “coil” they use to deliver the TMS is positioned correctly – what they are actually looking to stimulate is part of your pre-frontal cortex which is part of the brain that controls mood regulation among other things.

This is what the coil looks like when it is on your head – it’s quite something! Personally I’m not sure this particular fashion trend will take off..

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What does rTMS feel like?

As much as the researchers had tried to explain what it felt like (they had all undergone sessions so had personal experience) it is still a bit different for each person. It also can take a higher “dose” to get the required effect in some patients or even session to session which then further affects variation of experience.

For me I didn’t find the sensation painful, it was probably best described as uncomfortable. With each set of “pulses” sent out there were quite loud clicking noises. As it was on my head I felt something akin to a strong set of vibrations (again not painful). It also made my jaw shake uncontrollably because of these vibrations so I tended to keep my mouth shut (shocking I know!) while the pulses were delivered otherwise I ended up with chattering teeth and I sounded pretty ridiculous!

Side effects of rTMS

Sessions varied in how they left me feeling and the side effects I encountered. The main side effects I experienced were:

  • Headaches
  • Eye strain
  • Nausea

Other people have been known to experience other side effects including:

  • Light headedness – admittedly I did get this but as someone with low blood pressure and other co-morbid conditions this is fairly normal for me so I wasn’t able to work out if this was made worse by the treatment
  • Discomfort on the scalp

There are some more serious side effects but these seem to be very uncommon.

During the earlier sessions I definitely experienced more headaches and eye strain but this lessened over the following sessions, perhaps because my body was becoming more acclimatised? The eye strain also lessened if I wore my glasses straight after the session for a few hours (usually I just wear them for reading).

I also experienced quite high levels of nausea (although no vomiting thankfully). I am very aware that nausea is my body’s go-to reaction to a lot of treatments (mostly previous experiences with medication) so it’s likely I was always going to have a slightly more extreme experience in this regard. I found if I ate something small and very bland (say crackers) a few hours before the nausea would be pretty bad but not unbearable but if I did eat something richer it made me worse. But that’s just me and I would never endorse restriction obviously.

 

Devious Anorexia and Self Sabotage

As I mentioned in part two of this series of blogs, one of my main concerns would be how my Anorexia might try and sabotage me during the trial. I was very aware that this was the most freedom I had been given in over a year and freedom is a dangerous thing when you can’t trust your mind. I wanted so badly to prove that I could handle this level of freedom and this change and be trusted but the voice was so, so strong every hour of every day.

Unfortunately some of my fears were realised although things never got to the point where they jeopardised my place on the trial (e.g. dropping under the minimum weight requirement) and I managed to stay just above water long enough to undergo the whole course of treatment.

On reflection my Anorexia did use the trial as a means to restrict my diet to some extent and vastly increased the amount of exercise I was doing (mostly because of the walk to and from the station and when trains arrived early and I had time to kill). It was also very easy to slip back into the deceit: “have you eaten?” (yes but really no), “did you relax at the coffee shop when you arrived?” (yes but really no I walked for miles), “do you want a lift home from the station?” (yes because I’m exhausted but no because I can’t fight the urge to exercise).

Going through the trial without any external professional support was not good for me. I wish the team I was under had the foresight to realise that and to actually give me what I had been promised – sessions during the treatment to support me. However due to various issues and miscommunication I didn’t get a session until after the treatment was long done which ended up feeling utterly pointless.

Do I feel any better after rTMS?

Unfortunately the simple answer is: no.

I find out in a matter of days whether I was in the real or placebo group and I am desperately hoping it was the latter. Not because I want to spend another month of my life commuting and having my brain zapped (it’s exhausting, expensive and time consuming) but because if it was real it didn’t work (at least it feels that way right now)..and that’s another option crossed off, leaving me with very little, if any, options left for treatment.

HOWEVER this answer comes with an absolutely huge caveat – and that is what happened during the trial in my personal life which undoubtedly had a profound and disastrous impact on my mental health. If it was the real treatment it could well have not worked to it’s full extent because of everything else that was going on. I don’t know.

The personal stuff

Friends, family and readers of this blog will know that life for me and my partner has been very difficult for a long time now. To sum things up far too briefly in the last few years we lost our home and ended up moving back in with my family after 7 years away, we both got made redundant and we lost my partner’s grandfather in September 2016 after a long and bitter battle with Dementia. On top of our existing mental and physical health issues of course.

So as you can imagine things weren’t great. We struggled along on my benefits and the incredible and unconditional love and support of our parents but it was hard.

And then our world came crashing down.

Not long into the trial we discovered that my partner’s father had Cancer. Less than a week later we were told the worst news I have ever heard; it was Stage 4, it had spread, there were no treatment options, it was terminal.

Obviously this was absolutely devastating for absolutely all of us. And a complete shock. We walked around in a daze, we tried to comprehend, we still can’t. I won’t go into too much detail, it’s not my story to tel but I can talk about how it affected me in the immediate aftermath to give you an idea of how much my world was rocked during treatment and how this may have impacted on it’s efficacy.

I cried every day for weeks. Multiple times a day. Even in public (if you know me you know this DOES NOT HAPPEN). I cried five times just on the way to treatment one day when train delays pushed emotions over the edge and ended up literally collapsed, on my knees, hiding behind a pillar outside Blackfriars Station bawling my eyes out. I gave up on trying to hide it. I cried in public toilets, on the train, walking down the street.

Months on, now we find ourselves in the new year and the weeks are flying past I try desperately to work out what’s what – how am I feeling? What is causing it? Do I think the treatment worked? Was I even in the treatment group or did I get the placebo? It feels impossible to untangle.

So I’m sorry because I know this is not a neat story.

I wish I could say “I have struggled for years but after a few sessions I felt great!”. I wish I could be one of those inspirational “sick to picture perfect recovery”, “before and after” features but my life is not and has never been like that.

I will find out imminently whether I had the real or placebo sessions during the trial. I am completely unsure how to feel about this and I must admit a large dose of apprehension. If it was real and I’m no better that feels like yet another door closing on my already badly bruised face and if it was the placebo I have to muster up the motivation and energy to go through the process again, this time for real.

 

So watch this space for the results, honestly it’s going to be as much a surprise to me as it will be to you.

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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).

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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.

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.

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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.

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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”.