Amanda K, Auckland

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

I don’t think I ever had a migraine in my life before I turned 30. So I suspect it was a hormonal issue. That first major migraine came on quickly, and was massive – vomiting, nausea, one swollen exceptionally painful eye socket (it felt like my eyeball was swelling and turning inside out and melting at the same time) and unable to see clearly.

I had ringing in my ears that felt like my eardrums were going to burst, and it felt like my eyebrow had tripled in size and intensity, if that makes sense. My skull felt compromised. At that point I didn’t know much about migraines and hadn’t had many headaches so thought it was just a really a bad headache (!!!) so drove to my doctor with one eye closed and crying in pain and horror (I would NOT recommend this and would never do it again). They saw me straight away and put me on a saline drip in a dark room with a spew bucket and gave me a triptan medication.

I’m not sure what type of migraine I have – I just know that when I have it, it’s centred around my right eye socket and affects my whole brain and body. I can feel it in my teeth, my skull, my cheekbone, my ear, my shoulder joint.

How does migraine disease impact your life?

People thinking “a migraine” is a thing people use to get out of work is extremely frustrating – as is people actively using it as an excuse when they don’t have migraines. We don’t know people’s personal situations of course, but I have heard people say “I just say I have a migraine and can’t come in” when joking about a sick day, when actually having a migraine and not being able to come in is painful, upsetting, stressful (especially when you have a deadline-based job and can’t open one eye or focus your eyes, get out of bed, or drive to work). I feel like people lying about it as an excuse really undermines me. When I have a migraine, it affects me for days.

People not understanding that the migraine is not a bad headache makes me feel gaslit – there can be days post-migraine where you’re struggling to process things audibly, and your vision hasn’t come right, and it feels like you’re watching your life like it’s a movie because your brain hasn’t gone back to normal. It impacts how people perceive me at work. I work in a professional, deadline-based, high-pressure environment. Not delivering isn’t an option, so the stress of having a migraine is immense – not just for me but for the other people at my business. I hate that it has the potential to affect my outputs and the ongoing employment of my colleagues. But if I can’t even see a screen, or hear people, what am I supposed to do?

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

Rizatriptan has been a lifesaver for me. I don’t think I have “auras” like some do, but when I feel my right eyebrow start to throb and my eye socket skin start to shrink or contract, it’s time to take a Rizatriptan to fend the f*cker off.

I also think massage can help. I try to go for neck and shoulders at least once a month.

What are your biggest migraine triggers?

Lighting – a fully bright computer screen without dimming can make it more likely (this is a suspicion though, not confirmed).

Dehydration – this is confirmed.

Stress manifesting physically – I have tracked my migraines and found that if my shoulders and neck are tight from work-related stress I’m more likely to experience a migraine.

How do you manage during a migraine attack?

I take a Rizatriptan, and if I still feel like it’s coming on within half an hour, I take another one and go home as fast as I can. I go to bed and keep a bucket by the bed for vomiting. I try to let people I work with know asap before it kicks in properly. It’s actually really upsetting when you’re a professional person and don’t like to think you can be taken down by what people think of as a headache. I’m really good at my job, and never want to abandon it to a physical issue. It is in this sense that I think of it as a disability – it disables me from being able to deliver my outputs.

I also have blackout blinds in my bedroom. This helps.

How do you stay positive living with migraine disease?

I haven’t had one for years since I had a Mirena IUD inserted. I went from having migraine every few weeks or months, at times, to having one maybe every few years? This makes me think it’s more hormonal than I realised, since the Mirena has a topical hormonal component.

I am able to stay positive because my migraines have reduced in frequency. If I was still getting them regularly I feel like I would be at the edge of despair all the time. I don’t have kids, so I can do self-care as required. I really feel for people who have children AND migraines.

How can migraine care improve in New Zealand?

Triptan medication isn’t addictive* so in my opinion it should be available from pharmacies if you have had a migraine before. Furthermore, someone should be able to go and get it for you, because it’s not safe to drive with a migraine.

*MFANZ edit: Triptan medication has the potential to cause medication overuse headache if you take too many acute medications to treat your migraine and headaches over at least three months.

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

Do not HESITATE to see your doctor about migraine. It’s not normal, and it can be mitigated.

Anything else you’d like to share?

Please don’t lie about having migraines to get out of work. It actually impacts on people’s perceptions of migraine, and puts them at a disadvantage. Don’t pretend to get them – if you do, you should have to experience them! Just so you understand what you’re saying, and how it actually affects people. Migraine isn’t a joke or a get-out-of-work-free card. It’s painful and awful, and affects your home life and your work life and those around you too. I would wish migraine on my worst enemy – they’re my worst enemy, after all!

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