Robert Westhead, Head of Media and Staff Communications at Oxford Health NHS Foundation, writes about bipolar disorder, emerging from the ‘upside down’ and how we’re just beginning to grasp the workings of the human brain.
Why does mental health research matter? The very question seems to suggest it might not matter. But reality is, it could not matter more.
There are about 500,000 people, like me, with severe mental illness, equivalent to the population of Cardiff. We live in every town, village and city of the UK. We suffer more terribly than most people can begin to imagine, throughout our lives. Sadly, some of us lose our lives to suicide. Our families suffer greatly too.
So, it’s an enormous human tragedy that treatment is at present only partially effective at best. There is only one way really effective treatments will be developed – through research. This is why research matters. I am living proof of this having found more effective treatment thanks to cutting edge mental health research.
At 19, I was diagnosed with bipolar disorder, 30 years ago now. Rather unhelpfully, I was told I’d had a ‘nervous breakdown’ (what does that mean?). I remember soon afterwards going to a Bipolar UK event with my mum. We hoped to find out more about my illness and how best to treat it. I left despondent. Medical science had no answers back then. The brain was a total mystery.
Despite this early disappointment, I’ve spent my whole adult life searching for more effective treatment, scouring the internet and pestering experts. I’ve tried about 20 drugs under the care of some of the UK’s leading psychiatrists. More or less ineffective, none of these medications have properly controlled my illness and enabled me to live a normal life. For me, drugs just dampened down my extreme mood swings, never stopped them.
Looking back, I’m not sure how I managed to endure the resulting suffering. Virtually unrelenting and continuous rapid cycling, with my mood going up for 10 days and then down for 10 days. This, along with suicidal thinking as an ever-present companion, has been the hallmark of my illness. It’s known as rapid cycling. I suffered severe social anxiety that isolated me from friends and family, impaired memory and depressive mood, even when stable. I’ve been a poor father and a worse husband. Working has triggered cycling – a horror I can’t easily convey – throughout most of my working life.
My life changed beyond recognition
My life changed beyond recognition three years ago when, at the end of my tether, I was prescribed a calcium channel blocker, an experimental treatment for rapid cycling, by the Maudsley.
For me, it’s been like stepping out from ‘the Upside Down’ – an alternate dimension parallel to the human world, a horrible distortion of normal life. ‘Hell on earth’, if you’re not familiar with the Netflix series Stranger Things. It’s the hidden world of mental torture you inhabit, if you are so unfortunate as to suffer from severe mental illness. I stepped from this world into ‘heaven on earth’ – the world of people without severe mental illness – as a result of treatment with this drug.
Used mainly for treating brain haemorrhages, calcium channel blockers have had surprisingly positive results after being repurposed and trialled in rapid cyclers like me by psychiatrists around the world. It was recommended thanks to a review of all this research by experts at Oxford University.
The drug is not perfect, but it’s much, much better than what I was on before. My mood has been good and stable – no more cycling – my memory is much better and I have no social anxiety. It’s enabled me to become the ‘real me’. The person I would have been if I’d never developed this dreadful illness.
A professor of psychiatry tells me my medication is effective for me because I probably have a particular variation in the gene CACNA1C. This means my brain can’t use calcium in the normal way to regulate various brain cell functions. The use of calcium channel blockers to treat bipolar disorder is experimental, but an active area of research for better treatments for bipolar and schizophrenia.
I seem to have struck lucky with this treatment. But the whole field of research into bipolar disorder and other conditions has hugely advanced in the last 30 years. I’ve looked at countless research papers about bipolar disorder as part of my search for treatment. They’re pretty incomprehensible, but not unlike highly technical medical research papers on any other health condition – prostate cancer, heart disease or dementia.
Researchers are beginning to grasp the very workings of the human brain
Why is this? Researchers have piggy-backed off advances in other fields of medicine like neuroscience and life sciences. They are bringing to bear new techniques like genetic sequencing and functional magnetic resonance imaging. Researchers are beginning to grasp the very workings of the human brain – previously beyond the reach of science. We are starting to understand why the mind goes wrong.
Make no mistake, the brain, like any other organ in the body, can go wrong, with genetics likely playing a part in this. This is often the cause, particularly of severe mental illness, as I understand it, although social and environmental factors play a part too in disease development.
I call on researchers and practitioners, not least the Royal College of Psychiatrists, to provide accessible accounts of the latest research and thinking into every mental illness to give patients hope for the future and better understanding of their illnesses.
Precision medicine is part of this emerging approach for treatment and prevention that takes into account each person’s variability in genes. It will address the specific biological and psychological causes of our individual illnesses. This is the tantalising future for us all. As Chief Medical Officer for England, Chris Whitty, recognised recently progress in mental health research developing effective new treatments has been much slower than in other fields of medicine. Few successful drug treatments have been produced in the last twenty-five years. This is a stark contrast with other fields of medicine like cancer, HIV and heart disease. This must change, it will change, but it must change soon. Our need could not be greater. Free us from the Upside Down, hell on earth.