Statistics can reveal patterns and trends, but they often miss the depth and complexity of individual experiences. Research shows that for migraine, prevention is the gold standard. However, there are many barriers, both social and financial, to accessing preventive medication in New Zealand. Funding decisions for medications are often based on cost-effectiveness analysis – but what if ‘data’ doesn’t tell the full story?
This research explores the lived experiences of migraine disease (migraines) in Aotearoa New Zealand. We are using creative methods to spark conversation, uncover personal narratives, and understand the challenges faced by people with migraines. We are inviting you to take part in two ways: a. submitting a response to our online museum below, or b. by taking part in an in-person co-design workshop (coming soon) . Read on to learn more.
Online Submission
The museum of migraine moments is part of a larger research project exploring the role of creative methods in bringing visibility to otherwise invisible experiences. Please take time to read through the M.M.M Participant Information Sheet linked below. We’re inviting the migraine community in New Zealand to share small insights into their experience with the condition through pictures.
Pick a prompt. Upload your image and caption... and Submit!
"This captures my experience of the way migraine creates different sensory experiences for me, including visual hallucinations in the aura and loudening sounds. It is a moving image because the aura moves with me. This is my body's signals to take care of myself, rest, drink water, and use medications if I have to. Its my wee alarm system to retreat and restore." Credit to Ryan Quinlivan for creating this for me based on my description
Read the full story"This captures my experience of the way migraine creates different sensory experiences for me, including visual hallucinations in the aura and loudening sounds. It is a moving image because the aura moves with me. This is my body's signals to take care of myself, rest, drink water, and use medications if I have to. Its my wee alarm system to retreat and restore." Credit to Ryan Quinlivan for creating this for me based on my description
Read the full story"This captures my experience of the way migraine creates different sensory experiences for me, including visual hallucinations in the aura and loudening sounds. It is a moving image because the aura moves with me. This is my body's signals to take care of myself, rest, drink water, and use medications if I have to. Its my wee alarm system to retreat and restore." Credit to Ryan Quinlivan for creating this for me based on my description
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"A migraine attack can come at any time, without warning. You have to be prepared, with the full arsenal of weapons to defeat it. All the drugs. If you don't take the drugs at the first sign of an attack, they might not work and you're stuck with days of pain, nausea, incoherence and bumbling fatigue. Noise-cancelling headphones for when sounds rattle in your head and teeth and you have to block them out. Sunglasses and a large-brimmed sunhat for when light pierces your retinas into all the crevices of your sensitized brain. Distractions - the skin burn of peppermint oil can mask the deeper cerebral migraine ache. The scent of lavendar can mask smells that might shift nausea to vomiting. One day you forget your supplies, in a burst of optimism or carelessness. Migraine reminds you that you are not free to leave the house without your survival kit."
Read the full story"A migraine attack can come at any time, without warning. You have to be prepared, with the full arsenal of weapons to defeat it. All the drugs. If you don't take the drugs at the first sign of an attack, they might not work and you're stuck with days of pain, nausea, incoherence and bumbling fatigue. Noise-cancelling headphones for when sounds rattle in your head and teeth and you have to block them out. Sunglasses and a large-brimmed sunhat for when light pierces your retinas into all the crevices of your sensitized brain. Distractions - the skin burn of peppermint oil can mask the deeper cerebral migraine ache. The scent of lavendar can mask smells that might shift nausea to vomiting. One day you forget your supplies, in a burst of optimism or carelessness. Migraine reminds you that you are not free to leave the house without your survival kit."
Read the full story"A migraine attack can come at any time, without warning. You have to be prepared, with the full arsenal of weapons to defeat it. All the drugs. If you don't take the drugs at the first sign of an attack, they might not work and you're stuck with days of pain, nausea, incoherence and bumbling fatigue. Noise-cancelling headphones for when sounds rattle in your head and teeth and you have to block them out. Sunglasses and a large-brimmed sunhat for when light pierces your retinas into all the crevices of your sensitized brain. Distractions - the skin burn of peppermint oil can mask the deeper cerebral migraine ache. The scent of lavendar can mask smells that might shift nausea to vomiting. One day you forget your supplies, in a burst of optimism or carelessness. Migraine reminds you that you are not free to leave the house without your survival kit."
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So many things I do revolve around taking care of my brain - and it doesn't always work. Hopes have been crumpled. Dreams cut to bits. Plans ripped apart. But the hopes can be uncrumpled, flattened out with a caring hand and a new way of looking at them. They might take a different shape, but that's okay. Dreams can be stitched back together. They'll show up differently, with some scars, but those scars tell my story. Plans can be stuck back together, done another day, or in a different way.
Read the full storySo many things I do revolve around taking care of my brain - and it doesn't always work. Hopes have been crumpled. Dreams cut to bits. Plans ripped apart. But the hopes can be uncrumpled, flattened out with a caring hand and a new way of looking at them. They might take a different shape, but that's okay. Dreams can be stitched back together. They'll show up differently, with some scars, but those scars tell my story. Plans can be stuck back together, done another day, or in a different way.
Read the full storySo many things I do revolve around taking care of my brain - and it doesn't always work. Hopes have been crumpled. Dreams cut to bits. Plans ripped apart. But the hopes can be uncrumpled, flattened out with a caring hand and a new way of looking at them. They might take a different shape, but that's okay. Dreams can be stitched back together. They'll show up differently, with some scars, but those scars tell my story. Plans can be stuck back together, done another day, or in a different way.
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8 years of daily migraines and people still ask me things like "well, are you drinking enough water?" Believe me I have tried everything I can.
Read the full story8 years of daily migraines and people still ask me things like "well, are you drinking enough water?" Believe me I have tried everything I can.
Read the full story8 years of daily migraines and people still ask me things like "well, are you drinking enough water?" Believe me I have tried everything I can.
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"I first experienced migraines when I was 18. At the time, I didn't know what was happening to me. I kept seeing flashing lights and felt so disoriented that I thought I was seeing apparitions. The migraines were exhausting, sometimes leaving me bedridden for a week at a time, unable to do anything. They significantly affected my studies; I couldn't read because words would disappear or levitate from the page. Even simple activities, like spending time in supermarkets, became overwhelming. Eventually, I discovered that my migraines were linked to hormones and the birth control pill. After I stopped taking it, the migraines improved, though they didn't disappear entirely. Over time, I noticed a connection to my diet, particularly carbohydrates. Eliminating carbs from my diet has almost completely prevented the migraines. Now, the only trigger that still affects me is thunderstorms."
Read the full story"I first experienced migraines when I was 18. At the time, I didn't know what was happening to me. I kept seeing flashing lights and felt so disoriented that I thought I was seeing apparitions. The migraines were exhausting, sometimes leaving me bedridden for a week at a time, unable to do anything. They significantly affected my studies; I couldn't read because words would disappear or levitate from the page. Even simple activities, like spending time in supermarkets, became overwhelming. Eventually, I discovered that my migraines were linked to hormones and the birth control pill. After I stopped taking it, the migraines improved, though they didn't disappear entirely. Over time, I noticed a connection to my diet, particularly carbohydrates. Eliminating carbs from my diet has almost completely prevented the migraines. Now, the only trigger that still affects me is thunderstorms."
Read the full story"I first experienced migraines when I was 18. At the time, I didn't know what was happening to me. I kept seeing flashing lights and felt so disoriented that I thought I was seeing apparitions. The migraines were exhausting, sometimes leaving me bedridden for a week at a time, unable to do anything. They significantly affected my studies; I couldn't read because words would disappear or levitate from the page. Even simple activities, like spending time in supermarkets, became overwhelming. Eventually, I discovered that my migraines were linked to hormones and the birth control pill. After I stopped taking it, the migraines improved, though they didn't disappear entirely. Over time, I noticed a connection to my diet, particularly carbohydrates. Eliminating carbs from my diet has almost completely prevented the migraines. Now, the only trigger that still affects me is thunderstorms."
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"Traumatic brain injury after a sporting injury have caused my migraines and fuzzy brain."
Read the full story"Traumatic brain injury after a sporting injury have caused my migraines and fuzzy brain."
Read the full story"Traumatic brain injury after a sporting injury have caused my migraines and fuzzy brain."
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"This is some of my collection of fun plasters. I use these when I self-inject Emgality every 4 weeks. It makes it a little more bearable."
Read the full story"This is some of my collection of fun plasters. I use these when I self-inject Emgality every 4 weeks. It makes it a little more bearable."
Read the full story"This is some of my collection of fun plasters. I use these when I self-inject Emgality every 4 weeks. It makes it a little more bearable."
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"When a migraine is gone for a week, you start feeling invincible. But yet she waits behind a random corner, ready to squeeze you in her faithful hug."
Read the full story"When a migraine is gone for a week, you start feeling invincible. But yet she waits behind a random corner, ready to squeeze you in her faithful hug."
Read the full story"When a migraine is gone for a week, you start feeling invincible. But yet she waits behind a random corner, ready to squeeze you in her faithful hug."
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"On a bad day, it feels like the sun is purposely trying to get me. Even a sliver of sunlight peeking through my blinds is enough to send my brain into chaos mode."
Read the full story"On a bad day, it feels like the sun is purposely trying to get me. Even a sliver of sunlight peeking through my blinds is enough to send my brain into chaos mode."
Read the full story"On a bad day, it feels like the sun is purposely trying to get me. Even a sliver of sunlight peeking through my blinds is enough to send my brain into chaos mode."
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