Finding Light in the Shadow of Chronic Pain

“How often are you having migraines?” the nurse inquired, his voice a beacon of concern in the dimly lit emergency room. With my eyes clenched shut to shield them from the piercing light, I whispered back, “Every day,” my voice barely rising above the nausea that threatened to overwhelm me. He suggested a scan, and though I wanted to express my gratitude for his willingness to delve deeper, I could only nod, my heart heavy with hope for some help.

Five years had passed since my first relentless migraine that led me to the doors of A&E. A thousand migraines later, I found myself with a botoxed forehead, a recommendation from a renowned Liverpool neurologist who didn’t realize he was playing a part in my determined but ever failing quest for relief. It was a year of contemplation that led me to this unlikely solution, approved by the FDA in 2010, botox for migraines was offered for those who had exhausted all other options. I had since dismissed the option of migraine surgery, a drastic step involving severing nerves, when I found out that in order to have it they would first give botox and if that worked then migraine surgery was an option. For me, if botox worked that was good enough.

Photographs of me in pain dot my past, some captured by well-meaning friends, others by my own hand, a testament to my disbelief at the physical toll of my condition. To some, these images showed a smiling woman; to me, they revealed a person striving to maintain normalcy. Now, I can recognize that same silent struggle in others, and I reach out with a simple message: “Stay hopeful; there is still hope.”

My journey through the labyrinth of chronic pain was marked by more than migraines. Sciatic pain, sleepless painful nights, and gastric pain were constant companions, leading to nights spent seeking solace on tennis, pilates, and massage balls to ease the bone and body discomfort. I developed vagnisimus (pain during penetration including painful sex, painful/impossible vaginal examination/pap smears, even impossible administration of prescribed vaginal oestrogen). I had regular bouts of low back pain, tooth pain, elbow pains and neck pain that stopped me from walking as the slightest movement would set off spasms in my neck. I sought distraction from the agony by any means, even if it meant inducing pain elsewhere to overshadow the unrelenting squeezing, thumping and fire burning in my head.

Life became a cacophony of dizziness, sneezing, sinus pain, and panic. Anxiety and depression wove their way through my days. Simple tasks became herculean efforts, and the world outside my door grew daunting, filled with potential triggers for my migraines.

I retreated from the world, the glare of my phone screen and the noise of someone else talking too much to bear. I rarely went out except to work because something (a windy day, getting too cold, a food or drink that I consumed, music in the supermarket, a siren, bright sunshine or just simply fatigue) would set off another migraine.

My work as a yoga teacher and massage therapist suffered, there were cancellations and necessary days off. My memory now is mainly of working whilst in pain and rushing home to get in bed whilst checking how many hours or days before I HAD to go out again. I clung to warmth wherever I could find it, whether from a hot water bottle or a sitting with my back against a heater, my yoga teaching attire often replaced by the warmth of jeans and a jumper, sometimes a hat, a coat and gloves, with my hot water bottle behind swapped over to my belly once students were happy within a pose. I am to this day gobsmacked that students still showed up.

Even on my best days, mornings were battles against nausea, the simple act of brushing my teeth a war against being sick. I sought refuge in the dark, whispering for relief, fearing the start of the increased pain of many hours spent retching. Ice hats became my armour against the heat of the head pain, a bizarre yet necessary tool in my arsenal of ‘remedies’.

Through it all, my mum’s presence was a silent anchor in the long storm, she would came around to do chores, fill the cupboards, feed the cats, rub my feet - being as quiet as she could, tip-toeing around in the dark, her company a wordless comfort in the darkest hours.

A New Chapter: Embracing Hope and Community

The years brought a myriad of diagnoses, each one a piece of the complex puzzle that was my health. I must say here that the main thing that I heard was that what I had was ‘a bad menopause’ and that it would probably get better…or maybe not. Unfortunately, it just got worse as time went on. I was diagnosed with everything from premature ovarian failure to a spectrum of labeled migraines, each new diagnosis was a step on a path filled with uncertainty. The information given by a GP that menopausal women ‘don’t have hormones’ so this was not a case of hormonal migraines was just one of the many bewildering moments in this journey as I tried to unravel the reason for getting worse and worse. Another diagnosis was deterioration and abnormality within my cervical spine that was causing a cascade of symptoms including relentless nausea. I was told that surgery would have been necessary but it was in an area that was too vulnerable so visiting a pain-clinic for pain management was my only option.

The end of a long-term relationship under the strain of my condition was a stark reminder of how chronic pain doesn’t just touch the one who bears it—it ripples out, affecting those we hold dear, leaving a wake of heartache and helplessness.

In my pursuit of relief, I became a connoisseur of remedies, both conventional and alternative. From botox to HRT, from yoga to ayurveda, I explored every avenue. I even tried doing nothing, only to find the pain did not respond in kind. The list of treatments attempted is long and varied, a testament to my determination not to let pain define my existence.

It included but was not limited to: Botox, HRT (bio-identical and otherwise), over-the-counter painkillers, triptans, anti-depressants (all of the previous are GP prescribed) chiropractor, Reiki, colonic hydrotherapy, homeopathy, yoga, breathwork, stress reduction techniques, ayurveda (massage, diet, lifestyle, supplements and yoga therapy), sports massage, indian head massage, nutritionists, reflexology, thai massage, tuina, acupuncture, ball-rolling, foam-rolling, herbal medicine, Traditional Chinese Medicine, Liver cleanses, flower essences, Gerson Diet, Candida Diet, Keto Diet, Anti-inflammatory Diet, Gluten-free, Dairy-free, Caffeine-free, Sugar-free, Magnesium, Vitamin B Complex, Vitamin D. Multi-vits, Butterbur, Feverfew, Milk Thistle, Black Cohosh, Agnus Castus, Triphala, Specially formulated Migraine Supplement Nutritional Packages, Therapeutic exercises, CBD oil, aromatherapy, mouth-taping, Flare audio earplugs, Migraine glasses, Oil pulling, Castor oil packs, Neti wash, Ginger, Relaxation and Self-compassion work, Sleep Hygiene Courses, Sleeping Apps, Meditation Apps, Breathing Apps, Curable App, Calm App and much more that I have forgotten about. I also tried doing absolutely nothing - just eat whatever, do whatever and whenever - I got substantially worse. I am not saying these things that I tried are not helpful (although some of them absolutely without a doubt made me worse) but I am saying they were not enough alone and they were not getting to the root cause.

When Emgality, a new preventative medication only available to me privately, was suggested, I balked at the cost and the unknowns. The fear of worsening my condition held me back from taking that leap. The prospect of navigating the labyrinth of disability applications was equally daunting, the mere thought enough to trigger the familiar onset of a migraine.

But then, serendipity intervened. An online encounter led me to a programme called ‘Migraine Freedom,’ tailored for women like me, battling the relentless tide of chronic migraines. It was a regimen I had partly known, but with one crucial difference—community. Surrounded by women who understood the unspoken language of chronic pain, I found solace and strength. Their empathy and support became the cornerstone of my healing, a balm for the isolation that had so often accompanied my pain.

It took 12 long years but in the end it was pain reprocessing therapy and neuroplastic pain education and all the recommendations that it includes that lead me back to a chronic-pain-free life.

To those reading this, know that you are not alone. There is a world of understanding and support waiting to embrace you. Our paths may be fraught with challenges, but together, we can traverse them with courage and hope. The road ahead is uncertain, but it is paved with the possibility of brighter days.

We are more than our pain. We are warriors, and we are hopeful.

MORE ABOUT MIGRAINES

One in four women has had a migraine and, it turns out, the debilitating headaches affect three times more women than men.

Chronic migraine is defined as having headache on at least 15 days per month, with eight of these having migraine symptoms, for at least three months.

It is the second most disabling disease globally. The disability increases with the number of monthly migraine days (MMDs) — 70% of patients with episodic migraine (4–6 MMDs) and 90% of those with chronic migraine (at least 15 MMDs) experience moderate to very severe disability.

Migraine attacks affect virtually the entire body- not just our heads. Migraine affects the way our brains interpret stimuli from all 5 of our senses. It also affects many of our bodily systems, such as the nervous, gastrointestinal, autonomic, and musculoskeletal systems. So when someone tells you they have migraine disease, please do not dismiss it as simply a bad headache which can be treated quickly and easily.

Gastrointestinal issues: gastroparesis, constipation, diarrhea, nausea, vomiting, abdominal pain.

Musculoskeletal issues: jaw pain, neck pain, shoulder pain, full body pain and tension, weakness, temporary paralysis.

Sensory issues: sensory hallucinations, hyperacusis, photophobia, phonophobia, osmophobia, allodynia.

Autonomic symptoms: hot flashes, chills, thermoregulation issues, changes in heart rate and blood pressure.

Sinus issues: congestion, sinus pain and pressure.

Cognitive issues: difficulty with memory, speaking, reading, concentrating.

Mental issues: anxiety, depression, depersonalization, panic attacks, irritability, elation.

Vestibular issues: vertigo, dizziness.

Urinary issues: frequent urination.

Additional issues: tinnitus, colic, depersonalization, fatigue, tingling sensations, yawning, numbness, difficulty balancing.

These are just a few of the symptoms people may experience during a migraine attack.