Bernadette Hard

I am a GP living in rural Wales with my husband, who is also a GP, and our two sons who are 18 and 19, four horses, 3 dogs and a barn cat. My medical career has taken me to some of the darkest corners of society, where I have worked for decades specialising in the treatment of addictions. I am part way through a masters in applied neuroscience, driven by a desire to understand the human mind.

I ran every day, worked 6 days per week and ran a private company, while completing my studies. I enjoyed horse riding most evenings and paddle boarded, or sea swam on weekends and practiced yoga and meditation daily.

I encountered a stressful event that threatened key aspects of my life, I felt like my head would explode but I never in a million years believed that it literally would do exactly that.

One evening as I sat on the sofa I felt a jolt in my neck, and a strange heaviness which seemed to come from inside my skull. I got up and walked to the kitchen, and the odd feeling slowly built to something more like pain. By 6 am the pain in my head woke me. I had no intention of having my Sunday ruined by illness, so I downed co-codamol in irritation and went back to sleep. When I woke at 8 am the head felt fine. I went horse riding, forgot the headache and the next day drove to Heathrow and flew to Malta for a conference by myself.

The crisis in my life peaked and my mind whirred incessantly as it tried to find a solution before it literally popped. Again, the first indication was a jolt in my neck, followed by a sensation that my brain had been replaced by wet cement. This time the co-codamol had no effect, and I could not stand, eat, or think clearly. I stumbled into a chemist in the vague hope of a stronger painkiller and was soon on my knees retching into the staff toilet. This was when I discovered the relief of getting my head down low.

As I was being put in an ambulance, I was pretty sure I was dying but found myself still alive, being shoved through a CT scanner and subjected to a series of blood tests and examinations. By this point, I was convinced I had either a sub arachnoid haemorrhage or meningitis, so a normal CT and lab work was an unexpected relief.

Hum. So not dead. Tests OK, what is wrong with me? A trip to the toilet re-asserted the link with gravity, and a few clicks later Dr Google lead me to Low CSF pressure, later confirmed by a LP with a very low opening pressure. My unexpected Maltese adventure stretched to a month, three MRI’s bilateral sub-Dural haematomas and a thrilling trip home in a private jet ‘air ambulance’.

Agony had subsided into a constant ache accompanied by an array of fun symptoms: orchestral tinnitus from pulsing to clunking, a sensation of being in a metal box under water, pins and needles across my face, occasional double vision, a strange metallic tingling in my tongue and a whole range of neck back and limb aches which came and went. The most debilitating symptom was the cognitive fog that descended over my mind which felt unplugged from the machinery required to articulate thoughts.

Years of work at the sharp end of what happens when the brain is bathed in opioids alerted me to the pitfalls of seeking a pill to kill the pain, and I focused on non-dual meditation techniques to distance myself from the symptoms.

My brain soon worked out what makes things better and what makes them worse. I had become a human barometer, low atmospheric pressure seemed to add weight to the cement in the skull. Hormonal fluctuations also impacted, with progesterone seeming to aggravate the situation, and my un cushioned brain objected to the accelerating forces of moving vehicles like eggs in a shopping basket on a bumpy lane. Lying flat, good hydration and moderate amounts of caffeine served in buckets of matcha green tea provide brief reprieve. I found, lying down in a liberal tolerant inclusive society, is a bridge too far and those who dare to try it are likely to be viewed with variable degrees of distain, suspicion, or alarm.

After being delivered to my front door by private ambulance, I was slammed into the reality of the National Health Service. Having a ‘foot in each camp’ as a healthcare professional, who finds herself on the ‘other side’ insight is a double-edged sword. Whilst it has certainly provided me with inside information that has allowed me to navigate the system like a black ops insurgent, sometimes a bit of blissful ignorance would have been a comfort. As autumn turned to a wet cold dark Welsh winter around me, hope took a real battering. I felt trapped. My head throbbed and my thoughts were encased in the wet cement. I had no income, and my critical illness policy deemed my subdural haematoma not the right type. My feelings swirled from despair to guilt at letting my family down and being a burden. At worst I wished I had not survived. These dark thoughts served as a wake-up call. I needed to rescue myself from this pit. What gave me a toe hold to start the assent was the CSF leak UK website. I sold my car and determined to prioritise a diagnosis and management plan at a CSF leak expert centre.

As I watched winter give way to spring, and warm into summer, with thanks to a CSF leak specialist team in London, I have achieved a clear diagnosis of a ventral dural defect at T11 and been approved for an operation to repair it.

I am not fixed yet, and I understand the likelihood of my treatment returning me to the exact state of health I had enjoyed pre leak. But I have made a start on a journey of discovery and acceptance. My leak occurred at a peak of stress I never wish to return to. I don’t know the final chapter, but I am taking part in the story.