For as long as I can remember being an adult, I have been living with migraines.
In the early days, they would feel like a pressure pot was building, usually behind my right eye, I would stream with tears (just from that side) and be unable to think about anything else. The intense pain would force me to lay as still as I could in a dark quiet room, sometimes being lucky enough to sleep until nausea woke me and became all-consuming, having me pacing until I was physically sick. And for some reason at that point I would often be energised and ready to tackle anything, only to crash a short time after with overwhelming fatigue.
I tried various remedies, from the cooling strips on the forehead to the rubbing stick on the temple, and no end of over the counter pain killers of various strengths and combinations. Each came with varying levels of success in dealing with the attack, but the debilitating migraines still continued. I was finding myself in a perpetual cycle of migraine, fatigue, having energy, overdoing it, migraine, fatigue, and so on, where it felt like I had more bad days than good.
pushing through the pain
I’m a tenacious (some may call it stubborn) individual, determined to not let it stop me from working, and perhaps sometimes (read that often) in my younger years I worked too many hours when I should have just appreciated my body needed to rest. I still do that now from time to time, but I’ve become more aware of the need to take care of myself.
I recall an occasion when I was at work (as manager in a bowling centre) when I was struck with a particularly debilitating migraine. I locked myself in the office with the lights out and crawled under the desk to block out as much noise as possible, putting the (very capable) supervisor in charge until the next manager could get in to take over. I just wanted to get home to my own bed, so I battled the 30-mile drive home, stopping every few minutes to pull over, call my mum, and sob through the pain. It’s strange how crying somehow releases some of that pain, and after what seemed forever I made it home safe, was able to be sick, and then slept for what felt like days.
I also recall other late shifts where I was feeling the start of a migraine before the evening was ending. A few times I drove home with an eye patch and sunglasses, as the migraine aura caused visual disturbances that made street lights and headlights unbearable. I needed to reduce the blinding glare, knowing that once I was home I would be able to take some medication and crawl into the darkness of my bed to hopefully sleep it away.
THE PERSONAL IMPACT
As I got older, and I took on roles with more ‘regular’ hours, I found I pushed through with my energy on weekdays and reached a point of burnout on the weekends. Too frequently for my liking, I would lose a large chunk of my weekends in bed or just about mustering the energy to watch mindless telly. But now and again I couldn’t ignore them and had to resign myself to taking time off to simply sleep and recharge. This had an impact on my relationships, my social life, and my ability to make commitments when I could never be sure if I would be well enough.
I say all this because, I know many who live with chronic health conditions who are prone to do the same, pushing through pain to keep going, only to miss out on important events. Whether that’s through fear of losing their job or simply trying to make the best of the good days. But I also know that what inevitably happens is we only use up the already depleted battery too quickly and be in the cycle all over again.
I am now open and honest about what support I need from a workplace perspective, I consider the amount of work I take on, and I make sure I maintain a good routine, take my medication when needed and listen to what my body is telling me. My friends and family are understanding, especially those who also experience migraines or other chronic conditions, as they know it’s not just a headache, and if I really could do more I absolutely would.
the importance of knowing your triggers
Oh if only it was as simple as saying “do this thing” or “avoid that food” then there wouldn’t be over 10 million adult migraine sufferers in the UK still looking for a cure for this debilitating condition. Of course, there are things we can do to reduce the likelihood of an episode, but so many triggers are unavoidable.
My own triggers have changed over time but include:
- Weather – changes in pressure
- Stress
- Hormones
- Caffeine
- Alcohol
- Lack of or disrupted sleep
- Missing meals
- Strong smells – cigarette smoke, perfume, spicy foods
- Too much screen use – eye strain
If only I could control the weather, figure out how to exist without the hormones the human body produces, or be able to magic away the stress of everyday life, then I’d be a very rich person!! But sadly not, so those I have to simply be aware of and consider how I can in some way manage their impact. Being mindful of those triggers I do have some control over is what keep my migraines at a level where I can function effectively most of the time, with maybe a couple of particularly bad days each month. I’m thankful for that as I know there are many others who suffer far worse than I do.
sociable… to be or not to be
In my twenties, I worked unsocial hours in the hospitality industry, so regular sleeping and eating patterns were pretty impossible, and socialising with a few drinks too many was par for the course. I didn’t recognise alcohol as a trigger as I only drank on social occasions, and when I did I assumed it was always in quantities enough to cause a hangover, which bears many similarities to a migraine – nausea, tiredness, and inability to concentrate the next day. But as I’ve got older and more considered with my drinking, I noticed just a single gin & tonic was enough to make me pretty much useless the next day, so nowadays I very rarely drink, knowing the pain that follows.
Whilst I’m almost tee-total, I’m practically fuelled by tea (of the Yorkshire type). I’ve tried a few times to cut out caffeine and opting for decaffeinated, but I saw little difference. So when I know I’m still going to get the migraines from other stresses, I opt to allow myself the simple pleasure of a brew!
REASONABLE ADJUSTMENTS
Recognising the many benefits of having more of a consistent routine, I moved out of hospitality operations into 9-5 office type roles. But with that brings more time in front of a screen which I’ve noticed an impact on my migraines. And in the days when we would be in the office, the bright artificial lights and the noise of an open-plan office, as well as the long day to account for the commute, I found symptoms difficult to manage.
Working from home is probably the best ‘reasonable adjustment‘ I have had, as it brings with it so many small but important differences to how I am able to manage my day. It allows me to rest when I need to, control my light and sound exposure in my own environment, and manage my symptoms without feeling the stress of having to explain to others or have to worry about driving safely home, as I’m already there. With support, I’ve also found ways to manage the impact of screen use, including tinted lenses to reduce the strain, keeping my camera off on some video calls and using dictation tools.
hormones & treatments
When I look back to when the migraines started though, it was around the time I started taking the contraceptive pill, and whilst over the years my doctors have tried different options to see what helped, I know hormones still play a part in some of my migraine episodes. 3 in 4 migraine sufferers are women, and there is evidence to say that changes happen with migraines at menopause – some find it lessens, while others get them worse. I have that journey still to come. I’m quietly hoping for the best, but expecting the worst.
I’ve also tried complementary treatments – such as massage and chiropractic. They certainly help to reduce the build-up of tension on my neck that plays a big part in my overall stress and wellbeing.
But medication is my lifesaver – after trying various options (with the support of my GP), I have found that triptans help to clear the intense head pain and main symptoms, but they come with side effects of lethargy and brain fog in the hours, and sometimes days, that follow.
MY TOP TIPS FOR SELF MANAGEMENT
- Keep a migraine diary
- Avoid loud noise and artificial bright light
- Pay attention to food choices
- Get exercise and movement
- Listen to your body
Using my migraine diary I have been able to notice patterns and identify triggers, but I have also been able to see if treatments are making a difference. Finding the triggers that cause your headaches and learning to avoid them helps you live a more balanced, pain-free life.
I make sure to eat at the same times every day. I still find myself getting migraines if I don’t eat breakfast, or if I don’t eat a balanced meal with enough protein. I know alcohol is a trigger for me, and It’s so important to take care of your body. Sleep is really important for me. I’ve learnt that I need 8 hours of sleep as night late nights or early mornings that disrupt a regular routine means I’m setting myself up for a migraine.
With the build-up of neck tension and pain I get, I have found regular chiropractic appointments to help, and the more I exercise the less the tension builds up.
the wider cost
It is estimated that 3 million workdays are lost every year due to migraine-related absenteeism costing almost £4.4 billion and headache is amongst the most common neurological reasons for A&E attendance. Migraine is the second leading cause of years lived with disability.
A new report published by The Migraine Trust sets out the challenges facing migraine care. The report shows that it’s still very much a postcode lottery in terms of access to specialist care and treatment. A&E attendance for headache and migraine attacks has increased by 14% over the last five years.
According to NHS England, nearly 16,500 emergency admissions for headaches and migraine attacks could be avoided with the right care pathways, and £11.5 million could be saved on non-elective admissions
GetTing support
If you are struggling with migraines or headaches, and have followed my top tips already, go back to your GP and see what else they can try. It took me several years, and lots of different medications, to find something that worked for me and reduced the frequency I have migraines. I have come to accept I will always have them, and I have learnt to manage this and be open about what I need.
And in the workplace, ask about adjustments. There are many simple changes that can be made that can help alleviate symptoms, that can make such a huge difference.
