Migraine Awareness Month happens in June each year, with over 35 countries conducting awareness activities and events. Although migraine is a very common condition, affecting almost five million Australians, there’s still a lot of misinformation and mystery about what it is, exactly.
The theme of this year’s Migraine Awareness Month is ‘Your Migraine, Your Way’, focusing on the uniqueness of the migraine journey for each patient.
Highlights include live ‘ask anything’ Q&A sessions on Facebook, interviews with inspiring people and leading doctors, and Shades for Migraine on June 21 – a global awareness day where everyone is encouraged to take a selfie with their sunglasses on to raise awareness of migraine.
More than just a type of headache, migraine is a genetic, incurable, neurological disorder causing significant invisible disability. One in ten men and one in three women are affected. Working age women are the most significantly affected, with up to 45% of women between 25 and 45 experiencing migraine attacks.
People living with migraine tend to move up and down the migraine spectrum during their lives. Women typically peak in severity in their 40s, with men peaking in their teens or older age.
The latest research suggests migraines are not just vascular in origin, but the result of a hyper-reactive brain. When exposed to too much of something, or ‘triggered’, the brain overreacts and creates a ‘storm’ of peptides and other chemicals which naturally occur in the body.
This overload of activity causes the ‘migraine attack’ or the physical symptoms such as light, noise and sound sensitivity, nausea, and a severe pulsating headache. There are many other symptoms, and some migraine sufferers don’t experience headache at all.
Because migraine is a complex condition with a range of presentations, it’s common for people not to be properly diagnosed until their migraine attacks become frequent and debilitating. Many living with migraine don’t know they have it at all, and approximately one in five who know they have migraine have never sought treatment.
Migraine is frequently misdiagnosed as other headache diseases, MS, IBS, mental illness (especially anxiety) or a host of other conditions.
There’s no single ‘cause’ nor ‘cure’ for migraine attacks: you need to have the genetic component to have migraine, and the attacks are ‘triggered’ by any combination of factors – hormones, diet, environment, stress, etc. It’s not possible to fix the genes, or remove all triggers, the best we can do is manage the condition.
Medicine overuse headache (MOH) is a related or secondary condition believed to only affect people with migraine. MOH is caused by using migraine and pain-relieving medications too often, causing more headaches. (It used to be called rebound headache.)
The combination of migraine and MOH is responsible for many people with migraine becoming chronic (more than fifteen days per month affected by headache) and unable to work.
To avoid developing MOH, people who live with migraine are advised to limit their use of any class of pain relief or triptans to 10 days per month. Common over-the-counter pain medications such as Panadol and Nurofen should not be used more than fifteen days per month.
There are acute medications – called ‘abortive’ or ‘rescue’ medications – such as Triptans which stop a migraine attack if taken just as it starts. Awareness of these is low, and some mistakenly treat them as pain relief medication and over-use them, leading to MOH.
Triptans were made available over the counter (downscheduled from schedule 4 to 3) in February 2021. They are in small packs and unreasonably expensive for most people.
Historically there have been few preventative treatment options. Beta blockers, anti-depressants, and epilepsy medications were re-purposed to try and reduce frequency and severity of attacks, with uninspiring results and significant side effects. For those with severe and frequent attacks, 35 or more injections of Botox around the head and neck every three months has been available on the PBS since 2014.
Recently new migraine-specific preventative medications have become available. There are three currently approved by the TGA: Aimovig, Emgality and Ajovy.
Emgality received a positive recommendation to be listed on the PBS from PBAC in July 2019, and was announced in the Budget to be made available on the PBS for Chronic Migraine patients from June 1 2021. Other patients on an access program are currently paying $263 a month for their medication.
Ajovy received a positive recommendation to be listed on the PBS from PBAC in March 2020, but as at May 2021 had not been listed on the PBS. Patients on an access program are currently paying $287 a month for their medication.
Aimovig, which works differently to Emgality and Ajovy, was the first of these new medications. It was rejected from the PBAC twice and withdrew its third application. The PBAC found Aimovig to be cost effective and clinically effective, but rejected the application because there are too many migraine patients. Aimovig costs $695 a month when ordered direct or up to $900 a month from a pharmacy.
Vyepti, a three monthly infusion that works in a similar way to Emgality and Ajovy, is expected to be approved by the TGA for use in Australia soon, possibly even during June.
In the pipeline are many more new abortive and preventative medications, including two new classes of drugs (Gepants and Ditans). The Gepants are abortives taken at the start of an attack like triptans and are very successful. There are two brands currently available in the US:
Nurtec (made by Biohaven, has Whoopi Goldberg and Khloe Kardashian as brand ambassadors) and Ubrelvy (made by AbbVie, has Serena Williams as a brand ambassador).
However, due to the way Aimovig, Emgality, and Ajovy have been treated by our system, there are no scheduled release dates for these other drugs and they may never come to Australia at all.
Types of migraine
Common or typical migraine is the bad headache, nausea, sensitivity to light, smell and sound, that many are familiar with.
Migraine with aura, also called classic migraine has all the symptoms of common migraine, with an additional ‘aura’ phase before the headache where many strange symptoms are experienced. Aura symptoms are usually one of the senses not working quite right (for example numbness or pins and needles, seeing colours or flashing lights, strange tastes).
Migraine Aura Without Headache (MAWH) involves all of the elements of a migraine attack without headache.
Hemiplegic migraine typically involves significant weakness and numbness is experienced on one side of the body. Paralysis to either part (such as a facial droop) or all of the side (which looks a lot like a stroke) can also happen. Migraine with Unilateral Motor Symptoms (MUMS) is a similar sub type where motor weakness and paralysis is experienced on both sides of the body.
Migraine with brainstem aura (also brainstem migraine, previously called basilar type migraine) can involve visual disturbances, speech disturbances, hearing problems, weakness, vertigo, decreased consciousness, and in the most severe attacks, coma.
Retinal migraine causes temporary blindness or visual disturbances in one eye. This is different from a normal visual aura. Another vision condition related to migraine is Visual Snow, where it looks like you have lots of tiny dots in your vision, and bit like snow on an old analogue TV.
Vestibular migraine affects vision and balance. It is common for Vestibular migraine patients to not have a headache during their migraine attacks.
Abdominal migraine, common in children, involves abdominal pain, vomiting, diarrhoea and other gastrointestinal upsets, and not necessarily headache. A related condition called Cyclical Vomiting Syndrome
A migraine attack can last for days, weeks and even months. A migraine attack that will not end is sometimes called ‘status migrainosus’ or ‘intractable migraine’.
Migraine can also be described by trigger, especially menstrual migraine which is often more severe attacks closely linked to a woman’s cycle, exercise induced migraine which involves attacks triggered by sport or other exercise, and weekend migraine which involves attacks triggered by a change in routine, most commonly not going to work on the weekend.
Migraine costs the Australian economy an estimated $35b a year, mostly in health and welfare system costs and lost productivity. Over 14,000 people on Disability Support Pension have migraine listed as one of their top conditions.
Migraine contributes significantly to the gender pay gap: working age women with migraine often have to give up or step back from their careers to deal with the condition, right in the key years they should be advancing into management and other senior roles.
In the 2020/2021 budget $600,000 was allocated to migraine awareness. This was the first time ever that money had been allocated from the federal budget specifically for migraine.
No funds were allocated to migraine awareness in the 2021/2022 budget.
About Migraine Australia
Migraine Australia was formed in July 2019 as a support and advocacy body, led entirely by people living with migraine, to improve the wellbeing of all Australians living with migraine.
The organisation was registered as a charity in June 2020. Migraine Australia is run by a volunteer board.