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.

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.

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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”.