Recovering from a brain injury caused by a prescription medicine.
It was summer 2016, I was sitting in one of the beautiful parks in Montpellier, South France, debating with a friend whether or not I should move back to the UK. Outwardly, I was living in paradise. Inwardly, the stress of increasing health concerns was weighing heavily. For two years now I’d been having heart palpitations. They were getting more frequent, and happening indiscriminately, including during classes I was teaching. I’d be sitting at the back of the classroom watching the students at the École Nationale Supérieure d'Architecture give their presentations on sustainable architecture, whilst feeling my heart rev-up like a washing machine. It was a simultaneous feeling of abnormally fast heart rate with a feeling of cramp. But even with the fear of these episodes, I was more scared of losing my job. Despite the lack of job security as a self-employed teacher in France, I enjoyed my work. But the palpitations continued to increase in severity - and started happening in my other teaching jobs too. I’d seen a cardiologist in France who told me my heart was functioning normally. I kept going back to the doctors but was being told things like ‘what kind of dreams are you having? That might give you an insight into your problem’.
It was a 180 degree turn-around from the reputation of the French medical system that I’d known, and experienced four years earlier when a French doctor found that I had asthma, and 60% lung capacity; one year after first going to British doctors with breathing problems but being told it was just stress.
It was shortly after this that I was prescribed an anti-anxiety medicine, along with asthma medication, to cope with the psychological effects of not breathing properly for a year. A door closing sounded like a bomb going off. I’d be on the tram when I’d get a glimpse of the sun and would think it was about to explode. The world became an unfamiliar and overwhelming place. When the French doctors offered me a medicine to ease these symptoms I took them without hesitation, comforted by the encouragement to do so by the doctors.
They helped. Life went from loud heavy metal played on a rusty radio 24/7 to soothing indie rock played live at sunset. Three months into making the Mediterranean home, I could now start enjoying the new life in France. Initially, I welcomed the numbness that the drugs served up. Overdrive to first gear felt comfortable. But after 6 months, 9 months, 18 months I began to feel frustrated. I just wanted to feel normal again, the normal I knew before the breathing issues began. I grew tired of living life in first and second gear only; watching the world spin its wheels at full speed regardless.
So two years later in 2014, when the palpitations began, I assumed this was down to the stress of still not feeling fully recovered. But by this time my lungs were now above average capacity. On paper I was healed. Inside, I felt like I was breaking down. I was advised to up my dose.
Life carried on. But so did the palpitations, and the stress. The two together harmonizing in one bittersweet symphony; as was one increased, so did the other. The dose was upped again. Less sweetness, more bitterness.
Sitting at dusk in Montpellier city centre, watching the streets empty and the shops shutting down for the night, I decided to move back to the UK to find answers. I could go back, get it sorted, and then move back at a later date if I wanted.
Leaving was a strange cocktail of emotions. I’d moved to France with no job lined up after an opportunity had fallen through at the last minute, and I had a grand total of £100 to my name. It was a precarious move to say the least but I was determined to make it work. I’d arrived in Montpellier in 2012, jumped in a taxi and was shouted and sworn at by the taxi driver for my lack of French. Four years later, now leaving France, I jumped out of a taxi in Paris, mentioned something about arriving to grey skies in the homeland to which the driver responded “but I thought you were French”. Granted, he was a non-native French speaker too but we’d had a solid conversation for 30 minutes and I mentally raised that cocktail of emotions and toasted to a successful adventure on the whole. Grey skies or not, I was excited to return to England, find the answers, and be able to live life in full health again.
Shortly after celebrating the return with a donut in a bubble bath I booked in to see the local GP. I don’t know which one of us was more surprised when she explained that the anti-anxiety drug I’d been on for 4 years, is only prescribed for 1 week maximum in the UK; due to the risk of physical dependency that can set in after just 10 days.
This period of time is a bit of a blur but somewhere between doctors appointments and still trying to figure out the symptoms I ran out of this anti-anxiety medicine and subsequently came off it cold-turkey.
The next few weeks and months were a kind of hell I didn’t think existed. It was just like I’d seen in the movies. The shakes, the sweating, the insomnia, the inability to think or function at all really. Looking back I thought some of it was down to stopping the medicine, but it was a prescription medicine, not a recreational drug, it was fine. I was just extra-stressed with the transition back to the UK. It was temporary. The solution would be to get a full time job and get back on my feet.
The palpitations continued but sort of became drowned out by a sea of other symptoms. Stress. Must be stress.
I applied for a teaching job in London. A week later I went for the interview, was offered the job that day, and moved later that month to start. 6 weeks into that job I became ill with a virus, reluctantly took a few days off work at the suggestion of colleagues but I couldn’t seem to shake it off. I went to the doctors who suspected I had vitamin D deficiency. Another suggested it was post-viral fatigue. I tried to recover - I wasn’t letting go of this job. But the palpitations came back with a vengeance. Mid-teaching my year 5 class, I asked a teaching assistant to cover whilst I left the room to try and calm down. I was sent home, called 111 and was sent a priority ambulance. On arrival my heart was beating at 180bpm, although had somewhat calmed down by this time. I was taken to hospital but after about 40 minutes my heart had calmed down by itself. They ran a range of tests at A+E but everything came back normal. I was sent home. Still, none the wiser. I thought back to the breathing issues and having been in A+E then, being told everything was fine but knowing differently. I wasn’t sure I could handle that again. I tried to muster any inner strength I had to go back to work and overcome whatever this was.
The job was challenging for sure. On my first day the teacher that I was supposed to be replacing had walked out, without warning, and I was thrown in at the deep end. The first day was a solid day in ‘Lessons in handling chair-throwing, middle-finger raising year 5 students’. I had my work cut out. But after 6 weeks I felt things were improving. I tried to encourage a culture of ambition, positivity and mutual support in the class and it seemed to be working. Staff members were noticing the improvement too. It was stressful, but I enjoyed my job. I didn’t want to leave.
But shortly after I stopped being able to make the walk to work. I had to leave. I was now paying London-rate rent without a job, with an incapacity to function and with no answers as to why. How had I screwed up so royally?
After 6 months I had to leave London and stay with family. By this time I’d had around 5 more ambulances sent, each time ending in the same way - with the heart calming down after around 40 minutes and with the test results being clear. The paramedics could never “capture’ the start of a tachycardic episode which might have given some answers. I was going tachyardic just waking up. Having a shower/bath would set it off. As would leaving the flat at all. I became more severely agoraphobic as time went on. I had severe insomnia, couldn’t think properly and felt like I was in a constant state of exhaustion. Like that first 2 minutes when you wake up and everything’s a bit of a blur. Except that became the normal state of existence. I was just existing. Not living. And felt like I was struggling even at the existence bit.
In London I’d seen a cardiologist who suspected I had Autonomic Nervous System Dysfunction. He recommended I see various specialists including endocrinologists, neurologists and some other ‘ologists’. But services vary in different parts of the country and by the time I’d moved different advice and approaches were given.
Over another 6 month period I saw different GPs, had numerous blood tests, and more ambulances were sent. Still, nothing was really apparent in the form of an answer to why all this was happening. I even tried joining the local gym to use the pool as therapy. But ended up having a tachycardic attack on the floor of reception and never went back.
Two years had now passed. I was trying to hold on to the fact that all my observations were normal, and that maybe this was a mental thing, as had been implied by various people. But I knew myself. How did I go from being able to move abroad with little money and the equivalent of just over one lung functioning, to now struggling to shower, or even leave bed on some days. Life between 2016-2018 felt like a personal dystopia. Aside from the occasional day or weekend away I spent 90% of my time housebound and 40/50% bed bound. In the initial stages even sitting on the sofa watching TV was impossible. Everything was over-stimulating and painful. I sensed those around me felt that I was being lazy, apathetic and I needed to pull myself out of this hole. But I spoke with a friend who pointed out that that didn’t make sense, that he remembered how driven I was at University and how I always seemed to be doing various different projects at any one time. None of it made sense. I wondered if I was going mad.
Back in 2012 when I first started feeling issues with my breathing, I went to one doctor’s appointment whereby, after 15 minutes of first meeting her, she diagnosed me with Chronic Fatigue Syndrome (CFS). Having never heard of it, and being handed an A4 handout information sheet on it I didn’t really pay much attention to it. When the French doctors discovered I had undetected asthma they explained the fatigue I’d been feeling was down to the lack of oxygen in my body. But now, with enigmatic symptoms, and with enigmatic CFS on my medical file, doctors were explaining that the symptoms were probably down to that. In November 2018, 7 years on from my ‘diagnosed in 15 minutes’ appointment, I was sent to a Chronic Fatigue Syndrome specialist for the first time. To my surprise he didn’t agree with the diagnosis, and instead suspected I had Central Sensitisation - a nervous system condition; akin to that mentioned by the London-based cardiologist I’d seen. I was prescribed antidepressants and daily relaxation techniques to help soothe my over-stimulated nervous system.
After taking one antidepressant I started having spasms and muscle-jerks in my upper torso, hands and arms. The doctor immediately took me off them. I tried the relaxation exercises but the months rolled on, as did the symptoms, and the new spasms.
Finally in April 2019 I got the answer I’d been seeking. After a nasty mid-sleep tachycardic episode combined with vertigo (a symptom I’d had for 6 months after leaving London) an ambulance was sent. For the first time medical professionals were able to spend time listening to all the symptoms, timeline of events etc. It took two hours in total.
“Benzodiazepine withdrawal”, one of the paramedics said. “I think that’s what’s going on”.
I’d never even heard of Benzodiazepines but learnt this was the class of drugs the anti-anxiety medicine I’d been given in France fell under. The drug I was taking was called Bromazepam, or the common name - Lexomil. Being on it long term (longer than a couple of weeks) and coming off it cold-turkey were dangerous conditions. It can cause seizures and lead to suicide due to the severity in which these drugs mess with your natural brain chemistry, combined with the torturous range of symptoms they result in. The very nature of these drugs is that they affect your nervous system. Suddenly, the pieces of the puzzle were fitting together.
In the two and a half years since coming off this prescription medicine I’ve had 18 ambulances and lost my independence as well as any money and assets I had; totalling £50,000-£100,000 combined with lost earnings over the years. All because of a prescription medicine, taken as prescribed and with no warning of the risks. Seeing the coincidence in the timing of events myself and friends suggested to doctors that the symptoms could be due to this drug but was told no. A month after returning to the UK I was told to stop calling 111 and was laughed at down the phone because I wasn’t believed.
A month ago I went to the local GP, who simply said: “I believe you. You’ve been poisoned. I don’t know how you’ve gotten out of bed for two years. But you will make a full recovery”.
If leaving France was the cocktail of mixed emotions this was now an entire brewery.
As I started learning about Benzodiazepine withdrawal I started realising the scale and scope of the risks of some prescription medicines. Ironically, I’d started taking these around the same time I’d started taking other drugs to heal my lungs. One was saving me, one was destroying me. Just as some doctors didn’t believe me, or continued upping my dose, others realised the source of the problem and tried to help.
It’s hard to know how something so dangerous, fed through the very system that is supposed to protect us can be so misunderstood. In this country the fact that it’s not usually given for more than a week might explain the lack of understanding I repeatedly came across. But it is still being given out across the world as medicine. Recently I’ve read articles linking some of the high profile celebrity suicides with their use of Benzodiazepines. Some have likened it to the Opioid Crisis. Even in the UK it’s still available online and can be used recreationally.
I’ve learnt from both the breathing issue and the prescription medicine issue that second opinions can be vital. Maybe even the third, fourth or in my case around the fiftieth-something opinion might be the one you need. We all know our minds and bodies. I hope attitudes towards enigmatic symptoms that don’t fit neatly into a 15 minute doctor’s appointment change. That despite the hard working lives and schedules of doctors, it’s not innocent and worried patients that are left at the door with no answers and ongoing symptoms.
At a time when prescriptions for anti-anxiety medicines are being filled at a rather anxiety-inducing rate, maybe it’s time to consider the implications for this. Do we know enough about them? Are they always necessary to prescribe? Do the economic benefits of prescription-filling need to be reviewed?
Ultimately, whether you’re a patient, a loved one of a patient, or of a medical professional we need to be asking ourselves - are we doing the best we can? The best to listen to our bodies, the best to support those around us in need, the best to use the knowledge and resources we have to find answers? Sadly my experience highlights massive short falls in this, but where there are shortfalls, there’s always room for improvement.
Just as my brain re-negotiates the pathways to function properly again, I'm learning to rebuild life one step at a time.
I never could have imagined that a prescription drug would cause life to crumble to the curb so rapidly. As disorientating and scary as that can be, there's something refreshing in the process of renewal. Reading about those who have fully recovered from Benzodiazepine withdrawal saying that you come back feeling stronger and healthier than before is the best and only medicine I currently have. Life 2.0.
There's an opportunity to build something back up that's better than before. I hope that through stories like mine, lessons can be learnt in the medical communities too, to prioritise every patient's health above all else. That those most vulnerable in our societies, which is potentially anyone of us at anytime, are taken care of. That we review drugs that can do more harm than good. That we support those in need, regardless of if we fully understand the causes at the time. And that we continue to develop and improve our medical services across the board, services that at some point in our lives we all want to turn to with full confidence and reassurance.