‘The most important thing to understand about chronic migraine is that it’s not “just a headache,”‘ says Abi Stevens, a 34-year-old who lives with the condition.
We all get bad headaches, or even migraines, from time to time, but that’s nothing like living with chronic migraine, which means you get more than 15 migraines a month – at least one every other day.
For Abi, who lives in Suffolk, this has been her reality since she was a teenager, with things advancing from ‘episodic’ to ‘chronic’ over a number of years.
She tells Metro.co.uk: ‘In my case it’s genetic. Every member of my immediate family has migraine, to some degree, though only my dad and I have to take daily preventatives.’
There is a variation in the symptoms from attack to attack and person to person, but for Abi it usually starts with sensitivity to lights and loud noises – something she encounters ‘all of the time’.
‘As an attack comes on, these symptoms worsen and even the faintest light can be physically painful to look at,’ the 34-year-old says, ‘bright lights cause stabbing pain, and normal talking volume makes me flinch.
‘There will be a stabbing pain in the back of my head, throbbing pain all over my head, and tension and pain behind my eyes.
‘These symptoms can also be accompanied by fuzzy vision, brain fog, slowed or slurred speech, dizziness, fatigue, nausea and more.’
In her worst attacks she becomes severely motion sensitive too, to the point where turning her head an inch when lying in bed causes severe pounding and sharp stabbing pains.
She explains: ‘These are the most cruel of attacks because, on top of being the most painful, if I lie perfectly still for a while the pain eventually reduces and I might think the attack has mostly passed – but as soon as I move, I’m knocked flat by agonising pain again.
‘This state can last more than 24 hours.’
On particularly bad days, she cancels plans and has no choice but to rest.
She says: ‘If taking my rescue meds (Triptans) hasn’t helped, then I’ll retreat to bed with water and snacks that I can reach from bed, to make sure I don’t make things worse by dehydrating or skipping meals.
‘I’ll also often use ice packs and heat packs to soothe tense muscles and head pain.’
In 2018, she had migraines every single day of the year.
‘I was crying from the pain and had people call paramedics on me, but I have been lucky enough to avoid hospitalisation,’ she says.
After four years of trying many different medications and supplements, leaving her full-time job, and other lifestyle changes, Abi still gets migraines most days – but they tend to happen at night so are ‘less intrusive’.
She continues: ‘My average pain levels have reduced significantly but, since I still don’t get headache-free days, I’m still chronic.
‘On top of this I get the other symptoms with varying disruptiveness. For me the most disruptive are light sensitivity, brain fog, fatigue, and muscle pain, as they impact my ability to work.’
Abi used to work as a teaching assistant at a school for disabled children, but the bright lights, hot and noisy classrooms and stress were major triggers.
‘Eventually, I realised I was going to have to leave for my own health,’ Abi remembers.
‘Instead I now work from home as an illustrator.
‘I control my own work hours so I work mostly part-time to reduce my symptoms and have a very flexible schedule and random working hours to work around my symptoms, which I couldn’t do before.
‘I also get to control my working environment, such as the brightness of lights and screens and, break times, which helps a lot.’
Abi also works with disability charity, Scope, to raise awareness of chronic migraine – which is a disability.
She continues: ‘I’m now building an illustration practice which focuses mainly on working with charities and other organisations on projects designed to raise awareness and uplift my disabled community – including working with Scope, where I created my Diversity Is Power artwork, exclusively for their online shop.’
As well as changing her professional life, chronic migraine has changed her personal life.
She says: ‘When I do go out (for fun or to an event like a market or convention for work) I take a lot of precautions to prevent severe attacks: I get as much rest as I can in the days leading up to it, make back-up plans for how to handle it if I have a flare-up while out, wear sunglasses and also sometimes ear plugs, make sure to eat regularly, and try to avoid triggers as much as possible.
‘I’ve also found that if I take my “rescue” meds (limited to eight days a month) at set times on event days, it can help avoid severe flare-ups – although really I’m meant to wait until I notice an increase in symptoms.
‘My condition makes leaving the house a lot more stressful and anxiety-inducing than for the average person, because there are a lot more risks involved: risking losing time for work or fun, risking losing money on tickets if you can’t go, have to leave early, or need to take alternative transport home, but most of all measuring the risk of pain and discomfort against living your life.
‘Finding the balance between that risk and being able to enjoy activities I like and see friends and family is a constant struggle.’
She adds: ‘I think in some ways “migraine” being a well-known term makes it harder because people think they know what it is and often dismiss what I have as “just a headache”.
‘It’s a chronic neurological condition with a wide array of symptoms that effects people on a day-to-day basis. Migraine is a disease, not an isolated attack incident.
‘We need more education on disability and chronic illness as a whole because culturally we are afraid of disability and lack understanding of it, which leads to fear and mistreatment of disabled people.’
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