Suzanne, Auckland

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

I’ve had migraine since 2009 but was diagnosed in 2011. My GP took me seriously in the interim, but just couldn’t work out what was wrong until a pattern in my unwellness emerged. When she suspected migraine, she referred me to a neurologist who diagnosed me with atypical episodic migraine.

How does migraine disease impact your life?

I’m less reliable because of it, and I gave up being an employee largely because of it.

I can be well for months at a time, but when I have migraine attacks they usually come close together. Each attack is 3–7 days long, which means during a bad period, I feel like I’ve just recovered, and then I’m knocked down again.

Sometimes I can push through an attack for a while, and sometimes I can’t. But if I push through I don’t properly recover until I actively rest my brain by deliberately sleeping, avoiding brain stimulus or activity and trying not to use my brain. Because pushing through ultimately prolongs my symptoms, it’s not worth it. Early intervention and rest mean fewer days lost to migraine for me.

On the plus side, migraine’s impact also includes taking better care of myself than I probably would if I didn’t have migraine. If I get run down or don’t look after myself – whether it’s diet, exercise, sleep, worrying or not taking time to rest or be meditative – then my migraine will almost always flare up.

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

In terms of treatment, I started with preventatives that were all antidepressants in small doses. I also tried Inderal (propranolol), which was the worst in terms of side effects. None of them seemed to make much difference.

My neurologist referred me to a headache clinic in Melbourne (where I’m originally from). They suggested that seeing as there were often long gaps between my migraine attacks, it would be better to forget about preventatives and focus on staving off a migraine attack as it’s coming on.

Since then, I’ve focused on listening to my body to identify prodrome symptoms, putting together a cocktail of drugs and other things to hit a migraine attack with as early as possible and making some health and lifestyle changes.

Most importantly I try to get a good night’s sleep every night, eat healthy fresh foods, avoid processed foods and sugar, exercise regularly and resist stressing about things generally, sometimes using meditation to bring myself down a notch.

When I think I’m getting an attack, I use Migraine Buddy to record what medications I take and how I feel. It reminds me what to do when I’m feeling foggy and creates a record of what I took and did and how I felt that I can learn from. I also initially used it to get my sleep on track.

At the onset of an attack, I take a triptan (Rizatriptan – I used to have Relpax but it didn’t work for long), a large dose of anti-inflammatory (Naproxen) and an anti-nausea tablet (Metoclopramide). Since adding Metoclopramide into the mix about 2 years ago, I haven’t had an attack that’s lasted more than 36 hours. It’s been a game-changer for me.

At onset, I also take 3 grams of finely chopped fresh ginger (a natural anti-inflammatory) mixed with honey or peanut butter to make it palatable, and I’ll often drink a Coca-Cola or eat something sweet. It seems to help.

I also see an osteopath every 3 months to keep my neck and back in good shape, and a naturopath from time to time to explore other options. She got me onto the ginger. I tried acupuncture but it didn’t work.

What are your biggest migraine triggers?

Emotional stress. It took me a while to work out because I cope well with stress at work and busy times, but as soon as negative emotion enters the equation, down I go with a migraine attack.

I think being run-down generally makes me vulnerable to migraine attacks too. If I’m not sleeping well, not exercising and my diet’s shabby, I usually find that I lose a couple of days to migraine.

How do you manage during a migraine attack?

During the prodrome, when I realise an attack is coming on, I take my tablets and try to get organised by cancelling appointments, sending some business emails if need be and making sure I’ve got food easily accessible in the house.

When the migraine attack phase hits I usually sleep for hours then plan ahead for each venture out of bed. My favourite foods during migraine are pizza (I freeze the one from our pizza shop) and dumplings. Both of these I can get up, do something quick (like turn the oven on and put frozen pizza in oven) then lie down again for 10 minutes till it’s done.

When I start to feel better I test my capability. If I’m alone, I watch non-challenging movies (usually Rom-Coms I’ve seen before) then work my way up to movies I haven’t seen before and then to reading. Sometimes I’ll ask my sister over so I can chat quietly with her. She talks a lot in an easy way and I find the distraction sometimes takes me out of my own head but still feels restful. I’ll also try going for a walk or take my niece to the playground. I do easy things until the fog lifts completely.

How do you stay positive living with migraine disease?

I’m much better than I was a few years ago, which keeps me positive. I try to focus on what I can do and be more responsive to my attacks, which makes me feel more in control than I used to.

I talk about it to friends and take heart that migraine is more understood than ever before (even though there’s a long long way to go). Things are looking up for migraine, albeit slowly. Migraine groups are emerging and new migraine-specific treatments are finally being developed.

And I volunteer. When I’m unwell, I’m completely debilitated, so when I’m well, I like to do what I can to increase migraine awareness and support for people with migraine.

How can migraine care improve in New Zealand?

I’ve been in New Zealand for just over a year, so I haven’t had much firsthand experience of the healthcare system dealing with migraine, but I do know that there are fewer drugs approved for migraine here, so at least coming on par with Australia to approve a broader range of preventatives, triptans and Botox for migraine treatment should be a priority. And of course, it would be great to see newer migraine-specific treatments, such as gepants and CGRPs, available in both New Zealand and Australia in the near future.

General migraine knowledge and awareness is important. Health practitioners are not given much training on migraine, and assumptions are made. It would be great to have a cohort of medical and allied health practitioners accredited to treat migraine with a team-based approach to treatment. It’s a widespread but complex condition that deserves a lot more investment and attention than it gets. A lot more.

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

Three things. Learn as much as you can about it, keep trying things, even when it seems there’s nothing left to try and guard your mental health carefully.

I think support groups help so much with the first two bits of advice. We learn from each other’s experience and knowledge in support groups, and fellow migraineurs point us to information sources or new treatments that we might not have known about before. The more we find out, the more new things avail themselves that help us.

On guarding your mental health, I get malaise with migraine and find it hard to perk up again after an attack, or a spate of attacks. Depression and anxiety are common comorbidities with migraine, so when I realised I was struggling to recover mentally, I saw my GP to talk about getting some psychological or counselling help. It’s hard enough coping with migraine alone. Talking to a psychologist about strategies for recovering from each attack and reintegrating into daily life was one of the best things I’ve done.

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