2020 was already a crazy year, but for myself and my partner, the pandemic became background anxiety as we focused on my migraine health crisis.
In January last year I came off birth control. I’d been on it for all of my adult life, and at 30, I figured my body could do with a break. I had read books by well-known health practitioners about the underrated power of the natural menstrual cycle, and the negative long-term effects of the pill.
I decided to make the switch, but this choice had a momentous and unprecedented impact on my life and health. I’d never had a migraine before, and suddenly I was getting regular attacks. As my episodes involved dizziness and other murky symptoms, it wasn’t explicitly clear what was going on.
From the holistic health books I’d read, I had expected some negative changes initially, and I wasn’t overly concerned. I underestimated the complex neurological condition that it was, and that these were signs my sensitive brain was struggling to cope with the fluctuations of a natural cycle.
My GP diagnosed vestibular migraine (migraine with vertigo). I’m so grateful this was spotted early, but he gave little advice or information. I didn’t realise the weight of the diagnosis. I thought that anyone could get a migraine occasionally, and that it would just improve over time. Like many people, I needed some educating on my assumptions about migraine.
But the opposite happened. What started as episodic attacks and sporadic days off work descended into a severe illness and disability, with daily migraines that rolled into each other, and little respite. Coming off the pill had set everything in motion, irritating my brain chemistry. Now everything was a trigger including heat, sound, light and movement.
Looking at screens was impossible and I had constant nausea, vertigo, fatigue, head-pain and overall sensitivity. I was signed off work for over three months in my role as a PR Account Manager. My partner became my carer and it was the most emotionally and mentally challenging period of our lives.
Most days I was too sick to get out of bed or open the curtains. I struggled to do anything.
Some weeks I couldn’t read books, or listen to music or podcasts. In summer I was barely able to leave the flat as sun and warmth exasperated my condition. I couldn’t look at my phone for weeks, so I felt socially isolated. The worst attacks happened at night. I’d have waves of pain up my back, neck and head. My limbs would shake, I’d feel intensely sick, and the room would spin.
Placing my foot on the floor and using my breath as an anchor helped me through these frightening attacks. I’ve heard that many migraineurs turn up to A&E during an episode, convinced they’re having a stroke or hemorrhage. I had several well-meaning friends ask how my ‘headaches’ were going – but it’s far beyond this, as any sufferer knows too well.
In hindsight, I’m wary of alternative health practitioners that imply natural cycles are somehow healthier and more powerful in a positive sense. These professionals are published authors and have a digital presence and a platform, and as such, a duty to be vocal about neurological diversity and different needs. This information should be obvious and easily accessible rather than something you have to hunt around for or read between the lines.
For some migraineurs, birth control is a lifeline, and there should be zero guilt and shame about this. It’s an issue that can be left out of the health conversation at large. I’m sure I’m not the first to go through it and I won’t be the last, and so much suffering could be prevented.
The NHS is undoubtedly wonderful and should be celebrated. I was able to access drugs and have a conversation with a GP – but the rule that a migraineur needs to trial three different medications before being referred to a specialist was a struggle. It’s an understandable approach but it takes months, and the process was isolating and frightening. I had many unanswered questions and concerns. My care was limited to a quick phone call about medication.
The National Migraine Centre’s Head’s Up podcast was a life raft for my partner and I during this time, and taught us so much we needed to know. For example, I wasn’t told that popping triptans and paracetamol left, right and centre could prolong and intensify my condition. When I discovered the centre and eventually had a consultation, it was such a relief. I felt listened to and understood, and could get on the right track to recovery.
The meticulous report outlining my care plan was more than I could have hoped for. Now, I’ve emerged from the worst of it and I’m living my life again thanks to months of birth control, the migraine prevention drug amitriptyline, and a full painkiller detox. I even completed the Couch to 5K and can practice yoga again; both positive steps for me.
My brain is still reeling from last year and is still sensitive, but I’m living with my invisible disability. I had a phased return to work and slowly increased my screen time. I have a daily video call limit, and I suffer if I become complacent, but with boundaries in place it’s possible to manage it. I still have migraine attacks, but they’re less severe, and I can bounce back quicker.
I’d like to say to any migraineur reading this, that you are stronger and more resilient than you know. You’ll get through this attack, and the next, and the next. Many people may not understand, your friends or your family may not quite get it, but there is a whole community out there who do.
I’m an illustrator and I have partnered with The Feminist Bookshop in Brighton to create a print of the bookshop. They start from £7.00, and all are signed and numbered by me (link below). All proceeds will go to the National Migraine Centre and are affordable, so if you can, please purchase one to support this wonderful organisation in very testing times.