Results from the Migraine in Aotearoa New Zealand Survey 2022
It can take time for people with migraine to receive an accurate diagnosis. This can be for several reasons. Many people have migraine attacks but never see a doctor about them. One of the largest surveys of migraine in the world from the US estimated that only 61% of people with migraine disease have a medical diagnosis.¹ Another problem is that even if you do seek medical help, migraine is frequently misdiagnosed by doctors as other conditions, including tension-type headache, sinusitis and cervical/neck pain.² This can lead to delays in not only diagnosis but also in getting appropriate treatment.
From the Migraine in Aotearoa New Zealand Survey 2022, the average age when people had their first migraine attack was 18 years (excluding 2% of respondents who didn’t know or were unsure). The average age when people were diagnosed by a health professional was 24 years (excluding 2% who didn’t know or were unsure and 8% who were not diagnosed by a health professional).
That’s an average of six years between having symptoms and getting recognition by someone in the health system. Some of this delay may be due to some people being able to manage attacks with over-the-counter medication, but comments from survey respondents also suggest deeper problems within the health system with both diagnosis and treatment:
“Diagnosis needs to be better. Migraine not picked up by pain specialist, in spite of GP referral for chronic headaches. Similarly a GP at an urgent care clinic didn’t diagnose migraine in spite of me presenting with acute shoulder & neck pain, severe nausea, (with vomiting imminent) and the sunglasses I was wearing, due to light sensitivity. Shoulder and neck pain is a common start for my migraines, before the acute head pain and vomiting, and I’ve come to recognise it as a migraine symptom, but it’s never been noticed or mentioned by doctors.”
45–54 year old NZ European female
“I’m only just learning about migraine now, 35 years after starting them…I wish there was better education at diagnosis and options given. I’ve never heard of some of the things this questionnaire listed – should I have? Does my GP know about them?”
35–44 year old NZ European female
“All my GP gives me is Ibuprofen. It’s the same thing every time and it doesn’t even help.”
18–24 year old Pacific female
We know not every health professional is familiar with either the correct diagnosis or the range of treatments for migraine. It’s a long and ongoing process to improve the training and education of health professionals, so they all have an excellent understanding of this disease.
In the meantime, if you’re struggling with headaches and can’t get a diagnosis or treatment that works, do take heart. If you can, try a different doctor – maybe ask for a recommendation from other people with migraine (our Facebook support group members may be able to offer suggestions).
You could read up about migraine disease and treatment options – there’s lots of information on our website. You might want to take someone with you to appointments who knows what you’re going through and can help you advocate for what you need. We also have a page for health professionals that you can direct your GP to if they want to learn more about migraine.
With time, we want to see this gap from first migraine experience to diagnosis narrow. It’s something for everyone working in health care to aspire to.
References
- Lipton, R. B. et al. Diagnosis, consultation, treatment, and impact of migraine in the US: Results of the OVERCOME (US) study. Headache 62, 122–140 (2022).
- Viana, M. et al. Poor patient awareness and frequent misdiagnosis of migraine: findings from a large transcontinental cohort. Eur J Neurol 27, 536–541 (2020).
