Living with daily migraine
By: Katie Greig, who lives with chronic migraine
My migraine symptoms began when I was 12 years old with abdominal migraine, later becoming migraine headaches when I was around 18. All in all, I have had chronic migraine symptoms for over half of my life, but it took almost 10 years to secure a diagnosis and specialist support.
Now, I live with migraine symptoms daily, and a good month for me is one with low to moderate pain every day, and occasionally a few days pain-free. Unlike some other types of migraine, there isn’t a distinct beginning, middle or end, so I take each day as it comes.
The symptoms I experience have differed over the years, but a core characteristic is the burning pain I feel across most of my face, which I have almost every day. I occasionally get visual aura, but I constantly have visual snow which looks a bit like TV static across my field of vision.
One of the trickier set of symptoms are cognitive and spatial issues. These are where I struggle to pick things up, get disorientated or confused, and occasionally have awkward encounters if I walk into people.
Alongside these, I have nausea, light sensitivity and sound sensitivity which all flares up and down depending on the day.
By far my worst and most disruptive symptom is allodynia. This is where you feel pain without painful stimuli; so things like taking a shower, brushing my hair, wearing glasses, or even lying down on a pillow are extremely painful when it flares up. When my pain is at its worst, all I want to do is wear my tinted glasses, noise-cancelling headphones and lie down on a pillow, but due to my allodynia those actually end up being the most painful things I can do.
My healthcare experience
My experience with accessing migraine-specific healthcare has been a long and winding path. For a long time my symptoms weren’t taken seriously, and it took almost a decade to get a diagnosis.
My abdominal migraine was explored as a gastrointestinal issue initially in my early teens, and after a slew of tests my consultant said I had a functional illness and I was experiencing the physical effects of a psychological issue. It was really difficult being told that my very real, very disruptive physical symptoms were down to my emotions. I was referred to Children and Adolescent Mental Health Services (CAMHS), who quickly decided they couldn’t help because I didn’t have psychological symptoms, and I was left to manage my symptoms alone.
Years later, when I began getting head pain, I spoke to a GP to tell her I thought I had migraine. She asked me if I had aura, and I wasn’t sure. Because she had migraine herself, she said it couldn’t be migraine if my vision wasn’t impaired significantly. At this point I had no idea my visual snow wasn’t normal, or that migraine without aura is a valid experience.
It was only when I self-referred to the National Migraine Centre years later that my symptoms were taken seriously by a medical professional. My appointment with a consultant at the charity empowered me with the vocabulary and the knowledge to advocate for myself with my GP, leading me to be referred for an MRI and later to a headache clinic who were able to diagnose my migraine.
Over the years I’ve cycled through four different preventive treatments and five or six different triptans. I found I get too many side effects from triptans, so I stick to caffeine and paracetamol as an abortive treatment. I have also now been receiving Botox for over a year, which has reduced my migraine in severity by around 60 percent, although I do get some unwanted side effects. Botox has really improved my quality of life, even though my migraine is still almost daily. The thought of stopping treatment, or the effects wearing off over time is really worrying to me; I can’t imagine going back to the level of consistent pain I was in 18 months ago.
Working with chronic migraine
My migraine has definitely affected my career. I feel lucky that in my job I can take time off and flexi-work, which helps me manage my pain. I do feel like it’s limited my job prospects as I can’t always work rigid hours and I like to work from home when I’m more symptomatic. I’ve had very understanding managers so far who have recognised my value as an employee and trusted me to manage my workload around my pain.
What needs to change for people with migraine
There’s a lot that needs to change in the workplace, healthcare system and in education for people with migraine.
In my experience, it starts with the education system. There needs to be much more awareness and understanding of migraine in schools. I regularly vomited when I was at school due to abdominal migraine and I don’t remember ever getting support from teachers. It felt as though they thought it was normal.
I also think there needs to be better understanding of migraine in healthcare. I often wonder whether my migraine symptoms would have escalated to the point they’re currently at had I been diagnosed and treated years before. I feel really let down by the medical professionals who brushed off my symptoms because the standard tests ruled out anything ‘serious’, but I also know there’s so little research on migraine, especially given how common it is.
In the workplace, despite how common migraine is, I feel this is where I have experienced the greatest stigma. In the workplace I have had colleagues tell me to ‘be careful’ who I tell about my migraine, as well as endlessly supportive managers. Whether or not you receive the right support shouldn’t be about luck, it should be the norm.