How long have you had migraine and what type of migraine do you have?
I started getting episodic migraine when I was 9 years old but managed them quite well throughout school and university. I would have a handful a month and be able to manage them with sleep and triptans. They turned to chronic in 2021 with no explanation, at the same time as starting my first professional job, I’m 24 years old. I went from 2/3 a month to daily headaches and 10-15 migraines per month.
My migraines start as a headache and unless I treat them, they will turn into a full-blown migraine, which consists of pain behind my eyes and nausea, this can last from 5-40 hours. They’re quite hard to define as every migraine is a bit different.
How does migraine disease impact your life?
Living with migraine has been a rollercoaster and the last two years have been incredibly hard. And I apologise for the rant ahead of time but I think the daily strength required by migraine sufferers needs to be acknowledged!
Dealing with the pain (pain that would send anyone else to ED) is only a fraction of the impact. Because migraine isn’t a visible illness and the misconception that migraines are headaches not a neurological disease makes them really isolating to live with: going home from work constantly with a “headache” in the attempt to get home and to bed before it takes over your next forty hours is hard to explain to colleagues. Missing parties constantly and not being able to drink in your twenties. Constantly cancelling plans. Trying to explain why you don’t know what caused it, why your treatment stopped working or that can’t simply be “fixed”. The mental toll is huge and I think this is massively overlooked.
Migraine medication itself also wears you down. I learned the hard way that not all migraine medication will help, you have to go through a gruelling three months to find out if it will – if it doesn’t, you’re back to square one. Then on top of this there is no guarantee that if it works it will work forever. Pain management is a game in itself as if you overdo your pain killers you can cause more headaches so having to choose your “good” days ahead of time is a really weird way to live. I applaud all other migraine sufferers working their way through medication because it requires so much strength.
What are your biggest migraine triggers?
I’m not confident about any of my triggers as sometimes they are completely harmless. BUT I have noticed a pattern in; menstrual cycle (pre period), wine & gin, cinemas, shopping malls, LED lights, oversleeping, bad sleep, stress, stuffy environments, Covid-19, laughing too hard or crying too hard! LOL
What medications, treatments or lifestyle changes have you tried to help manage your migraine disease?
Preventive medication: I finally saw an improvement in frequency of migraines when I started Aimovig injections back in February. I have since switched to Emgality, which I have been on for 3.5 months and it’s been great! The injections are pretty painful but only once a month and I would definitely say worth it. I saw an improvement after two months and have gone from having eight long migraines per month to about 3-4 but they are less painful and usually go away after sleep. I have had less headaches, particularly at work, and am enjoying being able to work full weeks and normal hours! I hope they will continue to improve the longer I am on it.
Acute medication: I use rizatriptan or two panadol + naproxen to manage attacks. I had to journal this all year to learn how to manage medication overuse headaches.
Lifestyle: Stress reduction and self-acceptance. Gaining the confidence to educate those around me and who I work with about my migraines has taken a lot of stress away. The more understanding there is around my migraines the less pressure I feel and the less stressed I am, we can only do what we can do. I have learned to listen to my body too and not push myself in situations that might bring on a migraine, while also realising that I can do the same things as my peers – I just occasionally have to go home early or avoid alcohol!
Exercise: I think there is a direct link between moving my body and a reduction in headaches. I swim four times a week and this has been a game changer as it is a sport I can do with a headache; I don’t feel any pain underwater and I think the cold plunge is good for stress! I also love walking, running and yoga.
Other handy things: I have a Mynd Device which is great for helping with pain and reducing the number of painkillers I take. Tiger Balm, pure ginger tea, soft pillows, massages, the occasional good cry.
How do you manage during a migraine attack?
Depends on the migraine. If I’m at work or out I will try my best to take a triptan or hit it with a high dose of painkillers, usually with food, water and something caffeinated. If that fails, I’ll go home and rest. I unfortunately won’t fall asleep unless it’s bed time so if it’s not too painful I’ll kill time by having a bath, going for walk with sunglasses on or just mooching about the house with my Mynd device on high. If they are really painful, I just cry a lot but try my best to call my parents or my partner so I don’t spiral. My partner is amazing support and brings me all the cups of tea, meals and hugs that I need.
How do you stay positive living with migraine disease?
I am naturally a VERY positive person and I think that has helped me immensely. Positivity is a bit of a rollercoaster that coincides with how my migraines are. Last year as I adjusted to this new life with chronic migraine I really struggled, but Emgality has given me the clarity to learn that there is a lot of hope and support out there. Support groups such as the Migraine Foundation Aotearoa New Zealand one have allowed me to connect with others who are living like me and has led me to feel less alone. It’s nice to moan or laugh with those who actually get you.
I’m also very positive about progress in the migraine space in medicine. Last year when things took a turn, we didn’t have access to any CGRP medications in NZ and in that short space of time, I have now tried two CGRPs, the Migraine Foundation Aotearoa NZ charity has been established and there seems to be a global spotlight on migraine. This momentum keeps me hopeful.
How can migraine care improve in New Zealand?
I think there needs to be more education for GPs and ED nurses around what migraine disease is, the severity of it and the treatment options available. I think so many people can’t get access to neurologists and struggle to find the right support from GPs. Funding also needs to improve. The cost of living with migraine is incredibly high and so many people can’t get access to specialists or new treatments.
Workplace education. Migraine needs to be taken as seriously as any other disability, especially in terms of accessibility. We have to work when we have the flu or covid or a broken leg as we physically can’t work with a migraine – yet we get the same 10 days sick leave as everybody else.
I would like to see a reduction in the stigma of people who need to take medication (I have experienced this). We would never ask someone with a viable physical disability to not use their supporting devices, migraine is no different and being on preventive medication usually means we have already explored every other possible means of pain treatment. I would love to not use an injection every month and take the “natural route” but that isn’t an option.
What advice do you have for other people in New Zealand living with migraine?
Find a support network, ask questions and overshare as information is power.
If you are seeing a neurologist, specialist or doctor try arm yourself with as much information as possible and push back until you are getting the support you need and they are setting up a plan for you. If your GP is no good, change GP. I did this four times and have found an incredibly supportive GP who goes out of their way to keep up with new treatments and science.
If you are starting down the journey of preventive medications or big lifestyle changes perseverance is everything. Try everything for three months if you can and don’t give up if it fails. (This will involve a lot of crying but even if something doesn’t work, that is new information you didn’t know until you tried it).
Anything else you’d like to share?
I am in absolute awe of people living with migraine, I think we are superhuman. Thank you to the Migraine Foundation Aotearoa NZ for all the work you do to help us!
