'How often are you having migraines?' asked the accident and emergency nurse as I looked directly at him but with my eyes screwed up tight so as not to let any light through and speaking softly due to the terrible nausea rearing dangerously high in my throat at sounds, touch and smells. 'Every day' I told him. 'Ummmmm. Let's do a scan' he offered. I wanted to plead with him to find the cause and thank him profusely for being interested enough to investigate more but I just nodded numbly and waited. Five years after the first migraine that had taken me into the accident and emergency of my local hospital (and, about 1000 migraines after I realised that migraines were now 'my thing') I had a botoxed forehead courtesy of a suggestion by a top Liverpool neurologist who, unbeknownst to him, was being manouvered and guided into that position by me. This was after I had thought long and hard for a whole year about whether or not an injection of botulism toxin in my face could possibly be the answer to my prayers. It seemed unlikely but in 2010 the FDA had authorised it as a treatment protocol for chronic migraine as long as everything else had been tried. The idea of trying botox had come about during my google-search of 'migraine cure' which had suggested, for the appropriately desperate, migraine surgery. Yes, you read that right. It involved severing the nerves that were possibly keeping someone in migraine pain. They said they could check if it was right for me by doing botox first. The idea of migraine surgery scared me and seemed incredulous but I was not ruling it out. Back to the swayed neurologist. He did have other things in mind for me in the beginning. He wanted me to give up drinking tea. I told him that I had given up tea for 7 years previously but still got migraines. it seemed unlikely that this was the cause but he still suggested that I give it up for longer. He did ask me, a menopausal 50 year old diagnosed with premature ovarian failure, if I was pregnant at one point and I thought 'Does he think I am someone else?' I eventually left with the promise of letters arriving on my doorstep for botox and another MRI date albeit at the back of a long queue. He barely looked up during the whole disappointing appointment.
I still have a million photos of me in pain. Some were taken by others in a well meaning way, not seeing the pain on my face. I took lots of them myself because I was in disbelief about what was happening to me physically. Some people looked at the me above and saw a smiling woman. I look at it now and can't believe that people couldn't see the incredible amount of pain etched into my face. When I look at this photo now I see someone trying with all their might to look normal. The only perk to this is that, most times, I can see this kind of pain in others too now and I try to offer something/anything to say 'stay hopeful, there is hope still'. During these migraine years I am also getting regular sciatic pain, disturbed sleep, gastric/diaphragm pain (diagnosed as gastritis) that lends to nights sleeping and moving around on three different sized balls (tennis ball, pilates ball and massage ball), pushing them into my ribs and back to dislodge the stabbing pains whilst trying to stay asleep. When the pain in my head, jaw, eyes and nose gets really bad I wind rubber bands tightly around my fingers to cause incredible pain and focus on that because somehow it easier than having pain in my head that I can't ignore. I am suffering from a lot of dizziness, constant sneezing and sinus pain, blocked up nose and difficulty breathing in, I am having regular panic attacks and weeks at a time of depression. I have hip pain and shoulder pain that is chronic. I have memory problems and find anything that requires problem solving skills painful. Screen time is difficult as are everyday noises (dog barking, neighbour using washing machine). I eventually start having so much anxiety that I have thoughts that I'm likely to be attacked if anyone walks by me when I'm out and this becomes my final reason to stay indoors as much as I can. The wind seems to cause the onset of migraines but so does getting overheated, eating anything, all foods!, doing yoga, going for a walk, smelling anything unusual, having an argument with someone, feeling emotionally charged, getting a bad sleep, weather changes, travelling, feeling stressed, being in my flat for too long and being cold. I am aware that at this point I sound like a fucking maniac so I tell no one and I can only admit all this freely after writing this from a place of healing.
I am not answering the phone because the screen and notifications are overwhelming, the light is too bright even on dim, the tinny sounds of a mobile speaker hurt my ears and because I don't want to talk to anyone while I'm feeling so much body pain. This is very bad for business, networking, keeping friends and being connected to others.
If it rains whilst I'm out driving I keep my finger on the windscreen wipers turning them on for one or two times and then off for as long as I can before turning them on a couple of times again because the screech of rubber on glass is more than I can take. In my day to day I have stopped having days that are not hijacked by anxiety and pain. I force a smile to others and make excuses to leave as soon as I can because conversations are so taxing. I find it physically painful to try to think of things.
Work has become an uphill struggle. I teach yoga and practice massage but the number of cancellations and long breaks are taking a toll on my students and clients as well as me. I take a hot water bottle wherever I go in the car because I am freezing no matter what the weather. If there is a heater on at my destination I practically sit on top of it when I arrive. I also turn the lights down low, sometimes I even close all the curtains at the venue. When I am well enough to teach a Yoga class I am unable to get my 'yoga clothes' on so I teach in my jeans and jumper often with my coat and winter hat still on and turn the music off or on low. As soon as I get home I climb into bed until my next work appointment. When I have a massage client I have to get help getting my massage table up. I get out of bed for the client and get back in bed after. I shouldn't be working but there is absolutely no way I can afford to stop working.
Even on a 'good day' there is retching every morning upon awakening. I have to fight to get the toothbrush into my mouth. I curl up in a ball in a dark room whispering 'I feel soooo sick' over and over again like a mantra designed to summon an angel of mercy. If I start throwing up I won't be able to stop even to breathe so I ballast myself against it with iron willpower until it is inevitable. I become terrified that I am going to suffocate during bouts of retching nothing but bile and air. I'd pulled my back out three times and regularly burst the blood vessels around my cheeks whilst vomiting. Some mornings I would wake up with blisters where I'd tried to rub the pain behind my ears away and red marks on my cheeks from the two hot water bottles, one pressed against each side of my face. Later I upgrade to a hat made of ice. Yes, you read that right. This is so common that there are special hats that you can buy with four pockets. Two large pockets back and front and two at the sides that long lasting frozen packets slot into. I still talk about ice-hats like everyone knows what they are.
I would often call my mum over and she would sit in the dark for hours and hours and hours sometimes leaving and coming back at night or the next day. While she sat with me she would not eat so that there was no smell of food in the house or a plate clattering in another room. She would sit there massaging my feet looking worried and offering tiny pieces of cut up peeled grapes to stop me from dehydrating. One day it worked, the hour upon hour of vomiting stopped when I ate them and it became a ritual that we would try every time even though it had never worked again. I could see that she was upset and would do anything to take the pain away. The whole process from beginning to end usually lasted 27 hours but sometimes it would go on for days. Typically, I would get about 2-4 days between the severe migraines where I felt like I could get chores and work done. At this point I would work with a bit of a frenzy on trying to catch up with work, shopping, cleaning but I would also feel tired, depressed, anxious, aching and overwhelmed. Following these bursts of life I would usually get an incredibly severe and long migraine. The longer in between the migraines the worse the following migraine. That was my life for 12 years.
Ten years into the migraine journey I was on to my specialist appointment. I'd moved up in the World! I was off to see a migraine and women's health clinician. A professor with 30 years expertise who was once the Director of Clinical Research at the City of London Migraine Clinic but who was now working privately from Harley Street, a street in the centre of London renowned since the 19th century for its large number of upper end private specialists in medicine and surgery. By this time I had seen countless doctors, neurologists, specialists and I could feel my family and friends willing her to help me.
I cried when I saw her and explained that my life was pointless and I was useless to everyone and myself unless I could get better. By this point I felt positively fractured thinking everything from 'I don't want to live anymore' to 'I want to get well so badly I will do anything' to 'I've done everything there is to do. I don't care anymore'.
The specialist put me on bio-identical hormones and said that food choices really aren't going to make much difference to my pain levels. I was taught about 'thresh-hold' which is the idea that a person with migraine should do anything they can to not tip over their own particular limit of triggers into migraine.
Triggers for migraines can include:
lack of sleep
too much sleep
poor sleep
worrying about sleep
lack of food
too much food
certain foods
certain foods in combination
stressing out about certain foods and foods in combination
stress
dehydration
over hydration causing electrolyte imbalance
not enough exercise
any exercise
too little exercise
too much neck movement whilst exercising
cold weather
hot weather
weather changes
getting too cold
getting too hot
high pressure moving in
low pressure pressure moving in
crying about migraines
crying
any pain in the body
crying about any pain in the body
too much pain medicine
any pain medicine (for some)
overwork
stress about everyone at work hating you for not working hard enough
stress about not earning money since you were fired or fired yourself
a sudden lift in hormones in the body
a sudden drop in hormones in the body
not enough of one hormone
too much of one hormone
not the right balance between two hormones
taking hormones
taking HRT
loud noises
bright lights
strong smells
anxiety about being out and being exposed to loud noises, bright lights, strong smells
depression and loneliness from staying in
Yes, exactly. What the actual hell! People would ask me what MY triggers were and I would say 'LIVING!!' A bit dramatic you might say...AND a bit of a conversation stopper as it turns out.
There were many diagnoses over the years including premature ovarian failure, chronic and stress migraines, hormonal migraines and non-hormonal migraines - that one was because one doctor explained to me that menopausal women 'don't have hormones'?? deterioration/twisting and fusion in the cervical spine causing nausea, vomiting and head pain, possible cyclical vomiting syndrome and mid-way through these twelve years the absolutely fabulous addition of sexual dysfunction and vaginismus was added to the long list of 'Wow, I actually didn't think of that going wrong too....fucking fantastic!!!' Or exactly the opposite I suppose. During this time a long term relationship ended with the words 'I just can't take this anymore'. This is not a sentence to apportion shame but rather a sentence to highlight that chronic pain ripples out and severely affects blameless partners, family members, close friends and anyone caught within the wreckage of the day to day.
In an attempt to end the cycles of migraine upon migraine ad nauseam, pun intended, and the distress it was causing in my life I tried: Botox, HRT, over-the-counter painkillers, triptans, anti-depressants (all of the previous are GP prescribed) chiropractor, Reiki, colonic hydrotherapy, homeopathy, yoga, breath-work, 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.
A year after the appointment with the specialist at Harley Street I was prompted to try Emgality which was a monthly self injected medication but it was very expensive and, for me, only available privately. This new CGRP and the first preventative medicine that was designed specifically for migraines would be combined with the botox, bio-identical hormones and any necessary abortives. We would all wait and see if this would be the answer. Except I didn't want it and, if I did, it would cost me £1500 every three months plus the rising costs of my private prescriptions and I would inject it myself. I just couldn't put myself through it yet. In truth, after everything I had been through I was terrified that it would make me worse. I wanted another option.
At this point three friends in two weeks said that I should consider applying for disability asap as I did not seem to be getting an upper hand on my health problems and I actually seemed worse. I actually felt too sick to even apply. It entailed form filling, GP and specialist agreement, interviews, computer work, hell - just trying to make coherent sentences or trying to find someone to help me apply was enough to start off another migraine.
Instead of diving into the world of disability applications I had been lucky enough to bump right into an alternative online one day. The next thing I knew I was building a new future after joining a 4 month 'Migraine Freedom' programmed designed for 'busy women with chronic migraine'. Well, I am one of those things I thought and I was soon busy too being put through my paces including two hourly hydration with salt-water, keto diet, exercise ideas for those with exercise as a trigger and stress reduction. It was nothing that I hadn't already tried apart from one thing. Let someone else help me with every single low moment and join a group of women who understood everything I have written above without judgement, without a tilted head 'what?' and almost without being told. I had landed among friends and that was going to be a key piece to healing going forwards even though I didn't know it yet.
My journey was far from over. But for the first time in as many years I felt hope.
Read Part Two - A Dysregulated Nervous System
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.