November 25, 2020

My Story

‘How do you feel?’ Ben said, shining a bright torch into my eyes.

‘Where am I?’ ‘You’re in emergency.

An ambulance brought you here as you were lying on the side of Pallarenda Road unconscious. Your bike was a few metres away from you in the scrub.’

Ben told me the ambulance drivers had received reports of people being pushed off their bikes at the quieter end of the beach overlooking Magnetic Island. They assumed that is what had happened to me.

After the X-ray, I was wheeled up to Ward 2C. When we arrived at an empty bed, I tried to transfer from the trolley, but it triggered the worst pain I had ever experienced.

A look of concern flashed across the gentle face of the young nurse accompanying me.

"My neck feels like a rigid block of cement. When I moved, a searing pain shot up the back of it. It even hurt to breathe"

"Try to relax now," she said as she tucked in the sheet. "I'll speak with your doctor and organise some more pain relief for you."

In the early 1990s, I was regularly travelling around Australia as an occupational health manager. About half an hour into each flight a pain like an electric shock would shoot up the back of my neck and head. The pain eventually spread upwards, fanning out until it covered the entire back of my head and temples. Within a few years, the pain I had experienced in the plane became more regular and was severe after I played my piano and cello or went sailing. My physio put the pain down to early onset arthritis caused by flying off my bike.

In 1996 I started a job in Canberra as a ministerial adviser and each morning, I would feel shooting pains running up the back of my head, accompanied by waves of intense nausea. My eyes felt gritty as if they were full of sand, and I yearned for them to explode to release the mounting pressure inside them. Before the pain started, I usually noticed squiggly lines, blotches and blurry patches in front of my eyes. Often when the pain was at its worst, I couldn’t think of the words I wanted to say. My mouth refused to form the words I wanted to say, as if the messages weren’t getting through from my brain to the muscles in my face. 

After returning to Sydney in 1999, I despaired of ever being free of pain and nausea. I had forgotten what it felt like to not have pain and was elated on the rare days when I had a break from it. I consulted an endless round of specialists and health professionals, but none of them helped much. For two years, I regularly saw a rheumatologist, who cauterised two nerves in my neck, hoping to relieve the pain he thought was coming from the joints at the top of my spine. It was a hideously painful technique, as he injected local anaesthetic deep into my neck joints. 

While on the endless merry-go-round of seeking solutions, I stumbled across a neurologist who diagnosed migraine. He suggested I try Zomig, a drug commonly used to treat migraine. He also prescribed Zofran for nausea and vomiting. They both worked! And I was ecstatic! But like physiotherapy, they gave short-term pain relief, and the migraines would return, often later the same day. 

By 2004, I was feeling overwhelmed by the pain and a general sense of ever-increasing pressure inside my head and eyes. I fantasised about boring a hole through the base of my skull with an electric drill to release the tension. Once it hit, it felt as if a little engine inside me was speeding up, faster and faster, and spinning out of control.

In hindsight, these were symptoms of depression and anxiety. On the worst days, I felt as if I would go crazy and friends and family offered ‘helpful’ advice about acupuncture, herbs, massage, osteopathy, chiropractic and a myriad of other treatments that had worked for them, and I tried everything they recommended, but nothing seemed to help.

Between 2000 and 2005, I stopped doing all the things I loved because they triggered migraines. I was heartbroken to have to stop playing my piano and cello and missed the social connection of cycling, playing tennis and sailing with my partner and friends. My goal became getting through a day of work, returning home and lying in a dark room with a series of ice packs under my neck, but even this scaled-back lifestyle didn’t stop the relentless pain

I avoided social activities and cancelled commitments, causing me to lose some treasured friends. Anxiety about being stigmatised and the intolerance of some of my colleagues prevented me from admitting I was in pain or speaking about my condition. Pretending I was okay most of the time, I pushed myself so I seemed ‘normal’ and a high performer.  I now realise this wasn’t a healthy way of managing my condition. 

In 2005, my life changed. I met Jane Cousins, daughter of Professor Michael Cousins, the trailblazing pain medicine clinician, researcher and advocate for people with chronic pain. Jane could see I was struggling with migraines, so she suggested I make an appointment to see her father.

I sat on the waiting list of Royal North Shore Hospital's pain clinic for several months but then day of my first appointment finally arrived. Professor Michael Cousins and a team of health professionals, including a physiotherapist, psychologist, social worker and nurse, assessed me and for the first time I felt heard and understood. Professor Cousins diagnosed occipital neuralgia, a form of headache. He said a whiplash injury was a known cause and occipital neuralgia sometimes activated migraines. He suggested an experimental new treatment he had successfully trialled on two other patients.

It involved implanting tiny electrodes into the back of my head and neck to block the pain signals from travelling along the nerves in my head. I was willing to try anything. I went ahead with the surgery a few weeks later to permanently implant electrodes. After the surgery, I had fewer migraines and even had a few completely pain-free days. I felt as if Michael had given me my life back.

One year later, while washing my hair, I felt something sharp sticking out from the base of my skull. It terrified me and I immediately phoned the pain clinic. When Professor Cousins examined me, he said the end of an electrode had pierced the skin, and it was protruding through the back of my neck. Tests revealed a golden staphylococcus infection had invaded the wires. He had no option other than to remove the electrodes. The migraines returned in full force until I had new electrodes implanted three months later. Unfortunately, they didn’t work as well.

In 2008, I noticed a painful scab on the back of my neck. Professor Cousins swabbed it, finding that the superbug MRSA had infected the electrodes and wiring. He was forced to remove them again. An infection control specialist started me on aggressive antibiotic therapy, and I felt as if my life was over. I had the intravenous antibiotic vancomycin delivered via a portable device, and community nurses visited me at home every day to maintain the infusion, making me feel like an invalid. During the following year, I lost a tremendous amount of weight, and once Professor Cousins re-implanted the electrodes, they were only partially successful in preventing the migraines.

A significant turning point occurred in 2009 when I followed Professor Cousins' advice to take part in ADAPT, the pain clinic's management program. It ran for three weeks, and each day psychologists gave lectures about chronic pain and tips on managing it. The physiotherapists started us on a carefully graded exercise program, and a psychologist taught us cognitive and behavioural therapy techniques to help us change the way we thought about and dealt with pain.

The program taught me to stop catastrophising and to believe I had the power to change how I reacted to pain. It was immensely beneficial and for years I practised the stretches and exercises every night after work. I also applied the psychological techniques for managing pain such as desensitisation, and they became central to my daily routine.

I finally had more control over migraines and have never looked back—apart from a few rough patches when I trigger a flare-up by writing for too long, slouching, swimming too far or carrying heavy shopping. One of the major improvements now is when I spark a flare-up, I use the skills I learned in the program such as mindfulness meditation and carefully pacing activities and exercise.

Now I feel driven to share my knowledge and experience with other people who feel as if they too are stuck in a black hole and can’t climb out because of their constant, debilitating pain.

Written by: Gabriella Kelly Davies
Gabriella Kelly-Davies is a Sydney-based biographer. In 2018 she founded the life story writing business, Share your life story. She is currently writing the biography of the trailblazing pain medicine researcher, clinician and advocate for people living with pain, Professor Michael J. Cousins AO. She is also a consumer representative for the pain management executive of the NSW Department of Health.

One comment on “My Story”

  1. Marie, Thank you so much sharing your story. It is a wonderful thing to know that your not alone when living a life with chronic pain. As you know, I too have lived with Chronic pain for over 30yrs now, tried all of the treatments, my help after 20 years was the Persistent Pain Management Program through Nambour Hospital on the Sunshine Coast. They supported and assisted me with learning the skills I use each day. Work is my main thing, I still support people with a Disability, and remember to support and to do self-care can be tricky some days.

    Again thank you so much for sharing your story to help others living with chronic pain, chronic illness.
    Regards,
    Wendy.

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