Updated: Sep 26
I don't know what you see when you look at these two photos. Beauty? Ugliness? Acceptance? Rejection? Depression? Connection? Those are really in the eye of the beholder anyhow.
So, I can only tell you what I see - although it is coloured and filtered and filled in by memory, emotion and lack thereof.
This first photo was taken after a year of a botox-ed forehead courtesy of a suggestion by a top Liverpool neurologist who, unbeknownst to him, was being maneuvered 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 beggars can't be choosers and after a deirth of ideas and many ridiculous ones alongside it by a long line of practitioners, GPs, specialists and health gurus (before anyone takes offence! I was the pied piper of 'let's just try this - it can't hurt any more than years of migraines'). 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 - but, I was not ruling it out.......But let me just try the botox (elsewhere) first.
Back to the swayed neurologist. He did have other things in mind for me. He wanted me to give up drinking tea. What was this sorcery he was suggesting as a treatment for chronic debilitating migraines and cyclical vomiting? I told him that I had given up tea for 7 years and currently drank no more than 4 cups a week. He suggested that I give it up for longer. Wait for it......for.... forever to be precise, before I would be allowed access to the closely guarded gates of the botox clinic. This brought on a different sort of head pain as I imagined giving up tea forever before getting well or waiting forever before being offered other treatments due to not giving tea-free a fair trial. But then I would be dead? Yes, migraine free....but.... ow, my head is starting to really hurt. Is this guy for real? I became obnoxious, I think, or was it him being obnoxious? He did ask me (a menopausal 52 year old migraineur) if I was pregnant at one point and I thought 'am I in the right appointment?' But then he diagnosed me as having migraines, which is what I had been referred to him with, so I thought it was definitely me he was asking, 'Get me out of here'. I left with the promise of letters arriving on my doorstep for a botox and MRI date albeit at the back of a long queue. He barely looked up during the whole disappointing appointment.
The first photo shows a right eye rigid from years of right sided eye, ear, tooth, jaw, neck and nose pain. The light has gone out of my eyes. The green-ness is diluted and I have the anxious feeling that something is going very very wrong (I think you can see this in my eyes but maybe I am the only one that can see it). This anxious feeling turns into panic especially during the times that I am out of the house. I'm not sleeping. There is a sallowness under my eyes that cannot be covered up with concealer even if I could be bothered to try, which I can't. Things such as brushing my hair and finding an outfit becomes an ordeal and is left out unless necessary or a good day pops out of the blue. I'm not answering the phone because the tinny sounds of a mobile speaker hurt my ears. I'm rushing home because the cheery sound of someone whistling or a child bouncing a ball on the pavement can be jarring beyond my capacity. 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. Just to be clear, this is not during a migraine, this is my day to day. I have stopped having days that are not hijacked by anxiety and pain. My lips are so dry that they crack when I smile. Cracking a smile is so apt. I force a smile to others and split as soon as I can because conversations are painfully loud (even my own voice hurts my ears) and it's all so draining. My collarbones are jutting out due to weight loss from the constant nausea and vomiting. Every time I eat the pain intensifies. If the pain goes above a certain point the vomiting starts again. Even on a 'good day' there is retching every morning upon awakening. I have to fight to get the toothbrush into my mouth. If I can't, I know that I won't need it that day anyway - it is a sign of things going horribly wrong in a matter of 5 hours from then. By 2pm I will be curled up in a ball in a dark room with ice on my head and hot water bottles on my back and belly saying '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 due to the intensity of these bathroom antics and regularly burst the blood vessels around my cheeks. Some mornings I would wake up with the skin behind my ears rubbed into a blister and burns on my cheeks. This occurred due to rubbing my skull incessantly for hour upon hour and putting one hot water bottle on one side of my face and the second one on the other. I would call my mum over and she sits 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. But as my specialist would say. 'Once the migraine train leaves the station, nothing will stop it until it reaches its destination.' My destination was Pukesville. I might as well just get on and get on with it. The whole process from beginning to end is usually 27 hours but sometimes it would go on for days. I had another good friend on speed dial and between them they would take shifts.
Just after that first photo was taken I was on to my next hope in hell appointment. I'd moved up in the World! I was off to see a migraine and women's health specialist. 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, 10 years in, I felt like I was in a convergence of 'I don't want to live anymore' 'I want to get well so badly I could scream with frustration' and 'I don't care what happens anymore'. The specialist put me on bio-identical hormones, educated me on the use of coca-cola for nausea (this just made me throw up a mixture of acid and fizz) and said that food choices really aren't going to make much difference to my pain levels. I was taught about 'threshhold' 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 are:
lack of sleep
too much sleep
worrying about sleep
lack of food
too much food
certain foods in combination
stressing out about certain foods and foods in combination
over hydration causing electrolyte imbalance
not enough exercise
too little exercise
too much neck movement whilst exercising
getting too cold
getting too hot
high pressure moving in
low pressure pressure moving in
crying about migraines
any pain in the body
crying about any pain in the body
too much pain medicine
any pain medicine (for some)
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
anxiety about being out and being exposed to loud noises, bright lights, strong smells
depression and loneliness from staying in
this list goes on and on and on and yes, I wrote the above to make you think 'what the actual fuck?'
People would ask me what my triggers were and I would say 'living!!'
A bit dramatic and morbose...... and a bit of a conversation stopper as it turns out.
As you can imagine, it's hard to get up in the morning and not find a few layers of triggers already in place for a migraneur.
So, we were going to manage just a small part of the overall triggers and a smaller part of what would tip me over my thresh-hold. These bio-identical hormones should (should) eliminate some (some), but not all, of the migraines that were triggered by a huge drop in hormones.
There were many diagnoses over the years including premature ovarian failure, chronic and stress migraines, hormonal migraines and non-hormonal migraines - um, one doctor told 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....fantastic!!!' This really should be a given with anyone experiencing daily debilitating pain but I really wouldn't know because most doctors and nurses did anything they could to not talk about it with me. To be honest, the migraine pain made it hard to focus on any other area of worry in my life.
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 I couldn't afford it.
Twelve years after the initial pains began and three years after the Harley Street visit I was at Debbie Waidl's (Freedom From Migraine Method) virtual zoom-door.
This second photo was taken twelve weeks after I met Debbie.
Look at me! I look defiant! I don't quite know why.
Maybe I don't. Maybe that's just what my eyes see looking into my eyes.
I could have dried my hair after the shower before this photo. Or even combed it at least? I could have smiled. I could have chosen a nice outfit and put some make-up on. I actually physically could have for once! I chose not to in respect to the first photo and choosing a proper comparable pose even though the two photos would be incomparable in my mind.
I can move my forehead again in this photo as I am botox free. So, I could have pulled a surprised 'I feel fine?? How has this happened?' kind of look. But I opted for the death stare instead. I am also off of all the hormone replacements. My eyes have a light behind them again. This is my brain whirring again! There is more evenness to the colour of my skin, my cheeks are flusher and more meaty. My chin and my other chin have reunited. When people say 'have you gained weight?' I say 'yes!' with glee. I plan to just put it on and on. I'm so delighted that energy is attaching to me rather than doing an about turn. My collarbones and therefore my heart are well protected and safe.
I wanted to capture this both for myself and for my story.
My story is that four months ago 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 even after years and years of trying and I actually seemed worse. I wanted to explain that it would require me to google how to apply and then request disability and then fill out a17 page questionnaire, spend time on hold with my local doctor's clinic, request my health history from the authorities, speak to the specialists requesting letters detailing my distress (one would write 'she'd be fine if she would give up tea' and the other specialist had already said to me 'but your job is so easy') so I would need to see other specialists, make copies of all the documents, get help from Citizens Advice Bureau regarding putting together the information correctly (it's a sharp no if anything is amiss), get to the post office and then go to interrogations, I mean interviews, and argue, I mean explain to the interviewer (who has no training in migraines and their effects) how I am debilitated enough to require support but I also, sometimes, am well enough to work and then go back for more interviews and usually, in a case like mine, go through an appeal process once the initial 'no' has been awarded ....so if I did have enough energy for all this, which would take months from beginning to end, then I could just put some more paid work into my schedule instead and avoid all of that malarkey. But the migraine brain doesn't allow for such articulation even when you know what you want to say so I would just say 'can't' and change the subject. At this point every bill and purchase was being subsidised by my parents and two close friends. I was, in my eyes, officially a burden to everyone.
Instead of diving into the world of disability applications I, completely out of the blue, found the Freedom From Migraine Method run by Debbie Waidl and her team and joined. That sentence is not adequate to detail the emotion that comes with it. But no sentence will be.
Eleven weeks after I began their programme I had 31 days of no retching, no vomiting, no holding onto things in moments of vertigo, no 24/7 earplugs in, no panic about being out of the house and only 5 days of what I will only describe as a headache and head pressure.
I haven't thought about the future for years not even about what I might do tomorrow without thinking 'Oh God, spare me'. Today I thought about going to my parents for Christmas. Even the thought of making a plan is miraculous! Last Christmas I left all the plans on the table and put some frozen fish and chips in the oven for me and my very accepting friend then told them to go home and got in the bath with my ice hat on preparing for the worst. The Christmas before that I wasn't out of bed until 4pm and present opening had to be delayed until Boxing Day which, if you ever try it, manages to take the shine off of even the most magnificent present. Birthdays of friends and myself and special dates and get togethers have the same track record. Holidays were a long forgotten luxury years before the pandemic.
With the help of Debbie I am building a new future. One that had been torn to pieces and thrown to the wind angrily but is now being put back together piece by piece. The puzzle of my way forward is slowly taking shape and Debbie Waidl and Erinne Selim from the Freedom From Migraine Method (FFMM) are helping me find the missing pieces of the puzzle and where those pieces fit back into.
Erinne has been an incredible teacher. She has been my Yoga teacher although she doesn't know it. Not the sort of teacher that says 'now hinge forward on an exhale and melt into the ground with a sigh' but the sort of teacher that says 'you are not alone' and 'you've got this, I believe in you'. Just these words day after day have kept me metaphorically putting one foot in front of the other until I felt able to walk out of my past and into my future.
If any of this resonates with you I can't tell you how much you need Debbie Waidl and her team in your life. Debbie is so humble that she offers to find you the right people if it is not her and her team.
I urge you to get in touch and, if it is not migraines particularly that you are suffering from but that you understand the above and your life has been affected by pain, anxiety, depression, loss, trauma, ill-health or any combination of the above please reach out to someone who can help you. As Erinne keeps reminding me 'you are wonderful and you are worth it'.
My journey is not over. There is a lot of collateral damage to be undone from the past 12 years. But for the first time in as many years I feel 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.