Fiona, Wellington

How long have you had migraine for and what type of migraine do you have?

I’ve had episodic migraine for most of my life but it changed from a once-every-few-months-or-so to an average of 3 (sometimes more) times a week in my mid-20s. This has continued pretty much unabated – I’m now in my 40s, post-menopausal and the migraine attack march on.

I’ve also recently developed what seems to be an unrelated type of headache called hypnic headache. This wakes me up in the early hours of the morning and seriously interrupts my necessary eight-and-a-half hours of slumber. Bizarrely, the treatment is a shot of coffee (or a caffeine tablet) just before bed, flying in the face of all other advice about night time coffee drinking. It works for me, though – I think of it as my new superpower, having the ability to sleep like a baby after consuming an espresso. Sometimes caffeine will help suppress a migraine too.

What are your biggest migraine triggers?

Lack of sleep, emotional stress, alcohol, over-exertion. But not always and not inevitably. I think of triggers as pushing me over a threshold into migraine – but some days, the threshold is high and the trigger won’t reach it. If I’m well rested, I might be able to have a beer with no ill effect. If I’m in an airplane, that would be courting an ill effect. I've spent a lot of time trying to identify food triggers with inconsistent and unconvincing results. However, I avoid alcohol, orange juice and processed food and focus on a varied and balanced vegetarian diet that doesn’t upset my irritable bowel too much.

What medications, treatments or lifestyle changes have you tried to help manage your migraine disease?

I’ve tried every preventive medication on the books; herbs and supplements; Botox; acupuncture; occipital nerve injections; ayurvedic medicine; diet restrictions; chiropractors, osteopaths and massage therapists. None of it made a significant or long-lasting difference and some of the drugs had unpleasant side effects I couldn’t tolerate.

Things I’ve found helpful include biofeedback (basically, teaching me how to breathe in a way that calms my body down, which you could also get from meditation), yoga, a strict bed time so I get enough sleep (especially important when you get menopausal related hot flushes and insomnia), and the TENS (transcutaneous electrical nerve stimulation) machine called CEFALY. This can be applied to the forehead and buzzes the scalp with an eye-watering intensity, until you get used to it. It can be used preventatively but I find it most helpful to cope with protracted migraine attacks that last for days and don’t respond to any other pain relief. I’ve worn it at work and even at the movies, with surprisingly few quizzical looks. Quirky fashion can be fairly unremarkable in Wellington.

One thing I’ve wondered for many years is how much my work environment impacts migraine. The frequency and intensity of my migraine attacks increased around the time I started working in an office. Interestingly, before this I’d been working in hospitals as a junior doctor, by a million miles the most stressful job I’ve ever done. And yet under all that stress and sleep deprivation, I only had an occasional migraine. Was it the change in job type that brought on the migraine attacks – exposure to computer screens, poor posture from sitting at a desk all day, a sedentary lifestyle, lack of exposure to sunlight?

At the end of 2020, I took time out to investigate these questions, taking a break from work and spending five and a half months walking the length of Aotearoa/New Zealand, on the 3,000k Te Araroa trail (our national through-hike; literally the long pathway). Apart from the time I spent documenting the journey online through my Tramping with Migraine blog, which I did via my smartphone, there were no computer screens; no deadlines, zoom calls or team meetings; plentiful sunshine, fresh air, and physical activity; and the biggest stresses of the day were planning where to stop for the night and what flavour of ice cream to eat, if we happened to pass by a shop.

It was an incredible experience but the migraine attacks did not miraculously disappear. I had good days and bad days, just like when I was at home. There was comfort in the routine and simplicity of walking the trail, where the superfluous is revealed and life reduces to the necessities of food, water, shelter and rest. But I still had migraine attacks, just as frequently but perhaps not as severe, although at least 2 lingered on for days, adding pain in the head to the other pains accrued from so much walking.

I learnt many things from Te Araroa, but in relation to migraine, it confirmed to me what I already suspected – there is no easy fix to this condition. If anyone tells me that this is the magic potion/device/diet/programme that will cure me, I take it with a hefty dose of caution. The cause(s) of my migraine attacks remain elusive but there are almost certainly more than one.

However, I also learnt from Te Araroa that I am more capable and resilient than I previously believed. It was the hardest physical challenge I’ve ever undertaken, and equally a mental and emotional challenge. It gave me confidence in myself and faith in the future, that I can and will manage, even if the migraine attacks never retreat.

How does migraine disease impact your life?

Having migraine disease has restricted my career ambitions – I’ve had to choose jobs that allow some degree of working flexibility and I limit the amount of time I work to 0.9 or (preferably) 0.8FTE. On the plus side, migraine has effectively curbed my inherent tendency to be a workaholic and have finally deracinated my deep-rooted habit of burning the candle at both ends, as the consequences are so unpleasant.

The down sides are substantial, however – I earn less than if I were migraine-free and I sacrifice other things to give work my best. So many days I’ve gritted through a migraine at the office, not letting on to anyone how I feel, but depleting all my reserves so that when I get home I am a useless wreck, barely able to crawl into bed, let alone have a coherent conversation with my partner. I’ve let hobbies and creative pursuits slip away, because I only have enough energy to attend to the basics – exercise, healthy eating, sleeping, loving my partner, family and friends.

Of course, the silver lining of this is that I’m forced to prioritise the maintenance of my physical and mental health. If I don’t exercise or get enough sleep, or if I am overwrought by some drama, the ramifications are usually prompt. Other people may neglect themselves for years and only later discover that the damage done to their bodies, and minds, is deep and irreversible. I sometimes think of migraine as my health watchdog, that bites me when I stray too far from the path of well-being and zen. But often the dog goes rabid, and bites me when there is no need. If I could euthanise the dog I would, but as I can’t, I try my best to appease it.

How do you manage during a migraine attack?

My go-to pain relievers are non-steroidal anti-inflammatories and/or a triptan (I find rizatriptan to be very effective and less prone to lead to a rebound headache than sumatriptan). Depending on the circumstances, I might take a coffee, some ginger or an anti-nausea tablet. Most of the time, this works. I pull out the CEFALY when it doesn’t, and put myself to bed as soon as I can. Sometimes, the only solution is as much sleep as I can cram into the day and manage to get when it feels like a couple of knives are stuck in my skull.

How do you stay positive living with migraine disease?

My best coping strategies have traditionally been maladaptive, manifesting as some form of avoidance. I pretend I don’t have migraine disease, I don’t talk about it, I suppress my emotions because they’re uncomfortable and might trigger a migraine (but they must be felt, so they explode out through my head later).

I’ve grown a little wiser over the years, and a little more forgiving of myself. I’ve lowered my expectations of what I can achieve, but with an attitude of permission and equanimity, not judgment and disappointment. I’ve cultivated gratitude for all the amazing things I can still do, experience and share – I am always thankful that my migraine attacks are not worse than they could be. I’ve come out of the migraine closet and sometimes spontaneously admit to having a migraine even when it is not evident. I’m also fortunate to have an incredibly supportive and sensitive partner, who is a rock when the waves hit.

How can migraine care improve in New Zealand?

Fast-tracking the approval and funding of new migraine treatments would be a tremendous boon. I have found little meaningful assistance or support from the medical establishment and I’m sure many other people with chronic conditions have experienced the distress and stigma of being labelled untreatable, because the drugs don’t work for you, and made to feel like this is somehow your fault, and is now definitely entirely your problem.

Having more general practitioners who take a special interest in the management of migraine and related pain issues could be helpful. It’s an unfortunate truth that pain loves company, and chronic migraine is not infrequently coupled with other diagnoses, such as fibromyalgia, irritable bowel syndrome, endometriosis, low back pain, bladder and pelvic pain. More research and understanding of the nature of pain and why migraine attacks occur is desperately needed.

As people affected by migraine, we can also help support each other. We are all unique and what works for others might not work for you, but hearing from people who experience migraine not only makes you feel less alienated and alone but may bring to light some medicine or intervention that will knock back that pain in the head.

What advice do you have for other people in New Zealand living with migraine?

Keep trying and don’t lose hope. The most devastating thing a neurologist told me (I’ve consulted at least 3, and none of them were stellar) is that there was nothing he could do for me. This was not only untrue but it destroyed my hope that life could improve, or even become bearable (only a temporary destruction, before I pulled myself together and dismissed him as a loser).

There is always hope and always positive actions that can be taken. Even when migraine becomes chronic, the pain can wax and wane and you can still be proud of achieving the task of getting through the day. Goals may shrink, but your value as a person does not. Don’t be afraid of changing doctors until you find one who is trustworthy and empathetic, and able to engage with you on what may be a lifelong journey in trying to manage migraine, including alternative therapies.  

Thank you Fiona for sharing your story and helping to create awareness of the impact of migraine disease and making our collective voice louder for all New Zealanders. You literally walked the length of New Zealand to see if it could improve your migraine attacks. If it did, I think we’d all be hitting the trail ASAP!

If you’d like to share your story and be part of the change needed in New Zealand, email sarah@sayline.co.nz