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Perceptions of Migraine survey - the answers!

Thank you to everyone who took part in our Perceptions of Migraine Survey! Some of the questions were a bit tricky... Want to know how you did? Here's the answers... 


If there is no headache, it is not migraine.
While migraine is classified as a headache disorder, it is actually a very complex neurological disorder and the diagnostic criteria for a number of migraine subtypes is the absence of headache. The most common is called Migraine Aura without Headache, commonly referred to as silent migraine. Abdominal Migraine and Vestibular Migraine also typically present without headache. For about a quarter of people who live with migraine headache is not their most bothersome symptom. Additionally, people of colour are more likely to have migraine without significant headache which results in high levels of misdiagnosis and underdiagnosis in those minority groups.

Migraine is a complex genetic condition
A complex genetic condition is one where you need to have the underlying genetic variations to get the condition, but there is something else in our bodies or the environment that brings on the symptoms. Migraine is caused by a number of different genetic variations, in most cases a number of different gene variations combining, that affect the ion channels in the brain. Most commonly, the ions travel through a migraine brain faster than a neurotypical brain, making the migraine brain hyper-reactive. When exposed to our triggers - which are unique to each person but range from food chemicals, to smells, to hormones – those ions go too fast, the valve that normally regulates the ion channels gets stuck open, and the brain overloads resulting in the migraine attack.
Read more about the genetics of migraine

Taking pain killers and other common medications frequently can make migraine worse.
Yeah, this is one of the hardest parts of managing migraine. The drugs that can help the symptoms can make us sicker. This is called medication overuse headache or MOH. It’s important to note that it’s not caused by overdose, or really doing anything wrong, it’s just that people with migraine are more sensitive than other people, so we need to limit our intake of, well, almost everything. The recommended limits for triptans, painkillers, and caffeine are here.
Read more about MOH

There is no cure for migraine
A lot of people wish there was, some researchers are looking, but ultimately you can’t cure a genetic condition. What we can do is manage it, and we remain hopeful that everyone can find the right combination of therapies, supports, and lifestyle changes to get their migraine effectively managed.

The source of pain in migraine attacks is psychological, not physical
If we had a dollar for every time someone has told us it’s just anxiety or emotional… The pain in migraine attacks is caused by the overload of chemicals that happens during the migraine storm creating inflammation and widening blood vessels, cause the blood to pulsate and creating that signature thumping headache. It can also create pain anywhere else in the body – the neck is pretty common. It’s 100% physical. And for many, extremely painful.

Migraine attacks have the same symptoms as other headaches
Little bit of a trick question this one… while it is possible for other people to have ‘migraine like’ headaches, that is the throbbing or pulsating headache on one side of the head, by definition migraine attacks must have other symptoms such as nausea, or sensitivity to light, sound or smell, in order to be diagnosed migraine. And it is possible to have migraine without any headache at all.

You can die from migraine
Most of you weren't sure on this one, and it's not a fun topic to contemplate, but yeah, migraine can kill you. It is fortunately pretty rare, but a complication of migraine is a type of stroke called migrainous infarction – that is a stroke caused by a migraine attack. Also brainstem migraine can cause loss of consciousness and coma, which you can also die from if you aren't near a hospital. Unfortunately, the stigma against migraine is so intense, particularly among doctors, that the deaths are usually attributed to the stroke or the coma or something else, and not what caused those fatal events. Diabetes by itself doesn’t kill anyone either, yet according to the Australian Institute of Health and Welfare is recorded as the underlying cause of death in 4,700 cases in 2018, and an associated cause of death in a further 12,000 cases. (If you’re looking for the Australian Institute of Health and Welfare’s report on migraine, it doesn’t exist.) This is really important because if we don’t acknowledge and record migraine related-deaths then it will continue to be disregarded as unimportant socially and medically.

Migraine is an invisible disability
Some people get angry when we bring this up because they think it’s just an illness, or they object to chronic illness being defined as a disability. Here’s the thing: migraine is a genetic condition that makes your brain work differently. If you live with migraine, your brain has worked differently and been hyper-reactive your entire life. For most of us, that resulted in lots of good things – we learn faster, we adapt faster, some of us talk really fast and others have superhuman hearing or smell! When the attacks started, the downside of migraine began. For some, that started as colic as a baby. For others, it might not start until later in life. But if we come to accept migraine as a brain that works differently all the time, not just during attacks, then migraine is always a disability and the discussions about chronic illness are irrelevant. That’s a really big shift for both our community and the medical profession. But remember, the first genetic migraine studies were only done in the mid-90s, the idea of migraine being a vascular headache only fully busted in the late 2000s, and the functional MRI studies that are finding all the ways the migraine brain works differently are really only from the last decade. What we know about migraine is changing so fast… so try and be open to the new research (and forgiving with those doctors who haven’t read the latest journal articles). Migraine is a neurological spectrum disorder like autism; most people move up and down the spectrum throughout our lives, and it is possible to live with migraine and not be significantly disabled by it... but it is still a disability. 

The headache commonly associated with migraine attacks is usually on one side of the head and pulsating or throbbing.
Absolutely, the classic or typical headache associated with migraine is on one side of the head and pulsating or throbbing. However, it can be both sides, and the Brainstem subtype typically has a buzzing headache at the back of the head. Some people describe their pain as more thumping or stabbing.

Migraine is caused by some other underlying condition
Migraine is a primary diagnosis, which means by definition it wasn’t caused by something else. Genetic conditions are typically all primary diagnosis conditions. However, other conditions can aggravate or trigger migraine attacks. For example, a hole in the heart (called a PVO) can significantly contribute to migraine, and closing the hole through surgery can help those patients. Some very common problems such as high blood pressure or food allergies can make migraine pretty awful and you need to manage that other issue to effectively manage your migraine. Many people attribute their migraine as being 'caused' by an accident or other trauma, when it's more accurate to say that's what triggered the first attacks. Using the newer language of migraine disorder and migraine attack can help a lot in these conversations: nothing else caused your migraine disorder; other conditions can contribute to your migraine attacks.


How many Australians do you think live with migraine?
A: More than 3 million
Deloitte Access Economics put the number at 4.9 million Australians; using the WHO global rate it would be about 3.7 million Australians. There has never actually been a proper epidemiological study on migraine in Australia so the numbers are a bit fuzzy, but it’s a lot of people. (Yes, the Government has been asked to fund a prevalence study multiple times.)

Is migraine more common among men or women? Select an option below for what you think the rough gender split is people living with migraine.
A: 30% male, 70% female
Estrogen is not our friend at the best of times, but can play havoc with migraine. Typically migraine is pretty even in children, but in our 20’s there’s a very definite split: women get worse and men get better. Over 70, that reverses, men get worse and women get better. Why the current prevalence rates indicate migraine affects women more than men, this is based on experiencing migraine attacks. As we shift to understanding migraine as a genetic condition that makes our brain work differently regardless of migraine attacks, and diagnostic testing is developed, these numbers may shift dramatically. Trans people (we didn’t forget you, apologies for simplifying the question but there aren’t good numbers on Trans/non-binary people living with migraine) also have significant challenges with migraine – make sure you discuss your migraine with your doctors if you’re discussing hormones or surgery options.

Migraine attacks are more frequent for women…
A: between the age of 20 and 50
Again, estrogen is not our friend. In our peak breeding years is when migraine is at its worst for women. The proportion of women experiencing migraine attack in this age group is as high as 45%, and the number of women experiencing chronic or debilitating attacks is higher than the number of women giving birth in any one year. While we can never forget our kids, older women or men when we are providing support for people with migraine, it is absolutely true to say migraine is predominantly a disease of working age women. Migraine contributes the gender pay gap, the proportion of women in senior executive roles, and many other social issues related to the place of women in society.

Migraine attacks are more frequent for men…
A: before the age of 20
Migraine in teenage boys can be vicious. And while the statistics say it will calm down in their 20s, it’s often pretty hard to convince a young man that there is light at the end of the tunnel. We so often hear devastating stories of boys pulling out of school or not even considering university or a career because they think they will be debilitated forever. Most of the good migraine treatments are also not available to them (clinical trials are currently underway on paediatric use of the new CGRP medications). If you’re a parent of a child with migraine, please pay attention to their mental health as well as physical and ask for help!
Parents can find peer support in our Migraine Family and Friends group on Facebook

The youngest presentation of migraine is believed to be colic in babies.
A: True
This is fairly new research so don’t feel bad if you got this wrong. Colic has been long thought to be a gastrointestinal upset of some kind, but therapies targeting the GI system have never worked. Additionally, the idea that it is gastrointestinal causes stress for mum who thinks it’s her milk, or something she ate or did, causing baby’s excessive crying, when it’s actually the hyper-reactive migraine brain being over stimulated by things like lights and noise. Mums with migraine are much more likely to have a baby with colic, and those babies are much more likely to develop migraine attacks in later life. Dr Amy Gelfand, a child neurologist in the US, has been leading the work on this and as a result of her efforts, infantile colic is expected to be added to the next edition of International Classification of Headache Disorders as being a form of migraine.

Abdominal migraine is a subtype that is most commonly diagnosed in...
A: Children aged 5-10 years old
Abdominal migraine is the most frequently diagnosed form of migraine in children. It is sometimes believed to be exclusively a childhood condition, but adults can have abdominal migraine too. Gastrointestinal symptoms are experienced by all kinds of people living with migraine and are often misdiagnosed as IBS.
Read more about Abdominal Migraine

About Migraine Attacks

How long does a typical migraine attack last for?
A: hours to several days.
Once upon a time ‘a migraine’ was defined as a pulsating or throbbing headache on one side that last for 4 to 72 hours. We now know that is not quite right. A migraine attack has four phases, the attack phase lasts 4 to 72 hours (unless you have status migrainosus, which is what it is called when the attack phase lasts longer than 4 days). When you add in the prodrome, the aura, and the postdrome, the shortest a migraine attack can be is several hours… and it’s more commonly many days. A single migraine can last weeks or even months, but it’s rare.

Can exercising make a migraine attack worse for some people?
A: Yes
Exercise-induced or exacerbated migraine is very common, particularly for men. Getting the heart rate up seems to aggravate or increase the pulsating in the brain. You favourite footy player isn’t being a wuss when they don’t play because of a migraine attack, they are doing the right thing. Beta blockers can also be helpful for people who are exercise affected.
Read more about Excercise Induced Migraine

What usually starts a migraine attack?
A: Any ‘trigger’ which over-stimulates the brain
Migraine triggers are unique to every single person with migraine. While things like glary lights, loud noises, certain foods, not drinking enough water, not getting enough sleep or stress are common triggers, literally anything can cause the migraine brain to over-react. What causes your brain to over-react is as unique as you are.
Read more about triggers

Can someone with migraine do anything to stop a migraine attack once it has started?
A: There is medication some people can take that will ‘abort’ the migraine attack.
Abortives is an unfortunate name, but accurately describe what triptans (and some newer medications not yet available in Australia called ditans and gepants) do – abort the migraine attack. There are some tricks though, you need to take them as early as you can before the migraine attack really starts to build, and they don’t work every time, nor for every patient.
Read more about Triptans

How can someone living with migraine prevent migraine attacks from happening? 

A: Preventative medications, lifestyle changes, changing your diet, getting therapy, supplements and vitamins and not drinking alcohol are all things people can try to prevent migraine attacks. Drinking and cooking with only spring water and keeping your hair cut short are the only two in the list that were nonsense… despite the fact they persist in the vast array of things people with migraine are told to do. Getting a pet is debatable, sure, but there is lots of good science about how getting a pet is good for reducing stress, keeping your blood pressure under control and combatting depression and loneliness, so we’re gonna go ahead and say pets can help. Disclaimer: every single member of the Migraine Australia board has a pet and we are completely biased.

Thanks to everyone who took part! We'll release the results of the on 1 June. 

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