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Top 30 things I wish I knew…

Our new year’s resolution is to empower people with migraine to take control of their migraine journey. Talk to anyone who has lived with migraine for a long time and they’ll have a list of things they wish they were told when they were first diagnosed. We’ve compiled our top 30 here, as voted by the Migraine Australia Chat Group!

1. Migraine is a disability

This is a concept that many people living with migraine find confronting, but yes, migraine is a disability. There are lots of definitions of disability, but as an incurable genetic condition that causes impairment, and even the most basic management of migraine requires alterations to the environment or lifestyle (whether it be by changing your diet, work habits, or just wearing sunglasses all the time), migraine does meet every definition.

Migraine is recognised in Australian law as disability and is noted in some Government guidelines as a common disability which may require reasonable adjustments in the workplace. However, having a disability such as migraine does not mean you get any kind of automatic access to support. Almost all Australian disability supports such as Disability Support Pension (DSP) or the NDIS are granted based on your level of impairment rather than your diagnosis (that is, what you are and are not able to do for yourself). There are currently over 14,000 Australians on DSP because of migraine.

Read more about migraine and disability  

2. There are different types of migraine

There are currently lots of different types of migraine formally recognised in the International Classification of Headache Disorders, currently in its third edition (the ICHD3). All migraine is first divided into migraine without aura and migraine with aura. Then there are the following subtypes of migraine with aura:

  • Typical aura with headache
  • Typical aura without headache
  • Migraine with Brainstem Aura - a rare form of migraine with very complex neurological symptoms including loss of consciousness
  • Hemiplegic migraine - stroke-like migraine attacks
  • Retinal migraine - a form of migraine that causes significant but intermittent loss of vision in one eye
  • Abdominal Migraine - a form of migraine that is mostly gastrointestinal upset
  • Menstrual Migraine – migraine attacks occurring exclusively in the days around a woman’s period.
  • Vestibular Migraine – a form of migraine where the predominant symptoms are dizziness and loss of balance.

There is also a number of complications of migraine:

  • Chronic migraine - at least 15 headache days per month for at least 3 months.
  • Status Migrainosus – constant debilitating migraine symptoms lasting longer than 4 days.
  • Persistent aura – aura symptoms lasting for a week or more.
  • Migrainous infarction – a type of stroke caused by migraine attack, typically affecting younger women.
  • Migraine aura triggered seizure – also called migralepsy, where a seizure is caused by a migraine attack

You can have multiple types of migraine, and your management and treatment plan may differ depending on what types of migraine you have.

Read the ICHD3 Classifications

Read more about the types of migraine

3. Beware MOH

Medication Overuse Headache or MOH is one of the trickiest things to understand and manage. This is a secondary diagnosis is when a person who lives with migraine takes common pain and migraine medications as prescribed, but too often, and as a result gets more headaches. MOH is often a non-pulsating headache that is there every morning, every day; or when it gets really bad it will be there all day every day. It is also the main culprit in causing previously manageable migraine to become difficult to manage or chronic.

Despite the unfortunate name it is important to note that people who get MOH have not done anything wrong, it is just that the migraine brain is more sensitive that other brains, so you need to trick it by rotating your medications. The golden rule is not to take any type of medication, such as triptans or opioids, more than 10 days per month. Over the counter medications like paracetamol, ibuprofen and aspirin you should consider to all be one type of medication and only take a maximum 15 days per month.

Read more about MOH

4. Sometimes the things you think are triggers are actually early symptoms

You will probably be told early on in your migraine journey to keep a diary to figure out your triggers. Diaries are actually a very poor way to figure out triggers, because until you know what your earliest symptoms are, you don’t know when exactly the attack was triggered, so can’t tell what the trigger was! It’s also possible to have a delay of many hours between the triggering event and the onset of symptoms. Chocolate is a common victim of this, being believed for a long time and by many people to be a migraine trigger. But research has found that actually the chocolate craving for many was an early symptom: craving sugar or sweets is very common in the prodrome as the overheating brain start to burn through more sugar.

The best way to figure out food triggers is with an elimination diet. Then, once you have completed that, you can use the ‘challenge’ process to test other environmental factors to identify any as possible migraine triggers. Diaries are useful for documenting your symptoms and potentially identifying patterns, such as any association with your menstrual cycle, changes in the weather, or days of the week (Saturday migraine is absolutely a thing!). It will take many years of listening to your body to really get to know the pattern of your migraine attacks and what those early symptoms are, so be patient, and just keep working on it.

Watch our interview with Anne Swain, creator of the RPAH Elimination Diet, from Migraine Awareness Month 2020

5. Pain in the body, particularly the neck, is a common symptom of migraine

Migraine doesn’t just cause head pain – it can cause pain anywhere. Medically called migraineous corpalgia, it is quite normal to experience pain elsewhere in the body as part of migraine attacks. The most common is in the neck, which may or may not be followed by a headache. Because neck pain is so common, a bit like chocolate mentioned above, many believe it to be a trigger for their migraine attacks, however, research has proven that neck pain is more commonly a symptom of migraine attack.

6. Migraine often affects the gastrointestinal system

The earliest descriptions of migraine, all the way back to Hippocrates in 600BC, included reference of gastrointestinal upset and vomiting as symptoms of migraine attack. Somewhere along the way, the focus shifted to being all about the headache, and the GI issues associated with migraine are now frequently misdiagnosed as other conditions, such as irritable bowel syndrome. Most people living with migraine do have some GI issues, and if you think about it or track it in your diary, you may be able to identify a pattern that links those GI issues with your migraine phases. When talking to your doctors about your migraine we sure to raise with them your GI symptoms too, and if you have a gastroenterologist or other specialist for your GI issues, be sure they know about your migraine. When the GI issues are your primary migraine complaint you may be diagnosed with abdominal migraine.

7. Anxiety and depression are very common in people with migraine

It is believed around 60% of people living with migraine have clinical anxiety, and possibly all people with migraine have some level of anxiety. Migraine fuels anxiety, both by fundamentally being a hypersensitive brain that works fast, and therefore is inclined to overthink things, and the constant worry about triggering an attack is really good fuel for an anxiety fire. Depression is also really common, particularly in those who are debilitated by migraine, as it is for anyone prevented from living their life due to ill health. It is really important that we properly manage our mental health as part of managing our migraine.

Read more about mental health and migraine

8. The migraine brain works differently all the time

This is a fairly new idea so most people that live with migraine will be unaware of this one, but recent research has proven the migraine brain works differently all the time, not just during attacks. We don’t know yet whether it is entirely a result of the different genes, or because of regular attacks changing the way the brain works, but function MRI studies have found the ions travel through a migraine brain faster, and that migraine brains have more short cuts in the neural pathways. Lots of people with migraine talk faster than those without migraine, and some of us can learn faster, adapt faster, and are generally more resilient. Some with migraine with aura will notice they always have a heightened sense or ability, such as a stronger sense of smell or hearing, or maybe they have great attention to detail, or some other thing they can do better and faster than most. We look forward to more research in this area so we can learn more about what is different (and good!) about having a migraine brain.

9. If your doctor doesn’t take you seriously, find a new doctor

Migraine isn’t taken seriously by far too many doctors. This doesn’t mean your migraine isn’t serious, you just need a better doctor. Many people feel like they don’t have that power, but you do! Your doctors work for you, they aren’t your boss. It is perfectly ok to ask for a second opinion or seek out a more understanding GP. Post in the Migraine Australia Chat Group or in a local group that you’re looking for a new GP and ask for recommendations!

Alternatively, if you otherwise really like your doctor (or live somewhere rural where you don’t have a choice), try having a frank conversation with them. You can perhaps tell them how you feel, encourage them to look at the Migraine Australia website, or undertake one of the continuing professional development courses in migraine. Remember that it may not be their fault - what we know about migraine has changed quite dramatically since most GPs went to medical school. The vast majority of doctors, nurses and other clinical professionals were taught that ‘migraines’ are vascular headaches that last 4 to 72 hours. Retraining the entire medical profession is going to take many years, and lots of advocacy from people living with migraine.

10. There are different phases of migraine attacks

There are five phases of migraine. Four phases during the attack, and the fifth phase is the interictal or between attack phase. The four attack phases are:

Prodrome. This is also referred to as the warning signs but is more correctly the start of a migraine attack. You may be irritable, depressed, crave food, and many other symptoms that can leave you feeling ‘not quite right’. Can last hours to days.
Aura. All the odd neurological symptoms like seeing funny lines, numbness, or loss of balance. Only about a third of people with migraine get aura, and it usually only lasts about an hour. 
Acute, also called the headache phase. Not all people with migraine get headache, but it is a common symptom. This phase typically lasts 4-72 hours.
Postdrome, also called the migraine hangover. For some, this is worse than the headache stage, with depression and headache common, as well as significant fatigue, dizziness and confusion. Usually lasts a day or more.

Read more about phases

11. Everyone with migraine has a different experience

Migraine is a very common disorder, but because we all have a slightly different combination of genes, and all have a unique set of triggers, our personal experience of migraine is unique to each person. There is no treatment or tip that works for everyone. There is no symptom experienced by everyone. There are some commonalities among families, but generally, your migraine journey is entirely your own. That can make it seem really lonely, which is why we need to come together as a migraine community to acknowledge that uniqueness, but at the same time find comfort in connecting others who are also on their personal rollercoaster.

12. Yes, you do need to see a neurologist

One of the most problematic parts of migraine management is that you usually have to be debilitated and in crisis before you get to see a neurologist. Whether that’s because you have a GP who won’t refer you, or your nearest public neurology clinic will refuse to see you unless you’re really bad, or some other way the medical system discourages us from getting proper care for our condition. We believe that everyone with migraine should see a neurologist at least once to confirm the diagnosis.

If you have manageable migraine and it is not causing you much grief, absolutely your migraine can be managed by your GP and you do not need to see a neurologist all the time. However, migraine changes throughout our life, and can become debilitating very quickly. In this situation, it is immensely helpful to already have a neurologist, even if they have only done an initial exam and ideally an MRI. This provides your doctors with a baseline point of reference so they can know what you were like before. Additionally, the wait time for a follow up appointment is much shorter than the initial appointment, which means you should get the help you need faster if you took the time to see a neuro when you were well enough to wait. The wait time in the public system can be as long as two years, so if you have never seen a neurologist before, ask your GP for a referral as soon as you can.

Watch this video from Migraine Awareness Month 2020 on the basics of what a neurologist does for people with migraine with Dr Ron Granot

13. You will need to advocate for yourself

Because of the stigma of migraine being so deeply entrenched throughout our society and particularly among doctors, you’re going to need to fight. It shouldn’t be this way, but right at the point where your energy is being sucked away by migraine is exactly the point where you need to dig deep to find the energy to advocate for yourself. Don’t like the way you are being treated? Say so. Don’t want to keep taking a medication that is making you sicker? Say so. Want to be referred to a specialist or supportive care like a psychologist or physio? Say so. Don’t let anyone treat you like a waste of time or a drug seeker: firmly, respectfully, tell people what you need.

14. Having migraine puts you at a higher risk of stroke

This is not new information, but very rarely are people told when they are diagnosed with migraine that they are at a higher risk of stroke. The risk is highest for younger women with migraine with aura, and is increased by taking the combined contraceptive pill and/or smoking. Recent research has confirmed people living with migraine are most at risk of ischaemic stroke, and there is a diagnosis of ‘migraneous infarction’ which is an ischaemic stroke caused by a migraine attack. Higher frequency of migraine attacks is linked to a higher risk of stroke, but there is no relationship yet found in severity of migraine symptoms and the risk of stroke.

Relative risks of stroke for younger women with migraine

15. Migraine is not just a headache

The most common myth about migraine is that it is just a headache. By definition it isn’t! Migraine attacks, even in the mildest form, will be accompanied by other symptoms, such as nausea, vomiting, sensitivity to light, sound or smell, or perhaps fatigue, gastrointestinal upset, or mood changes. There are many people who live with migraine for whom headache is not a significant symptom, or they do not get headaches at all.

16. Migraine is incurable

This is another one that many people with migraine may have difficulty accepting, but migraine is incurable. You can manage migraine, and even manage it so well that you are migraine attack free: but you will need to keep managing it forever. There is as yet no treatment, no surgery, no anything that will make it go away: it is part of your genetic makeup and will always be a part of your life. If you see an ad or something on social media about some product, thing or service that can ‘cure’ your migraine, ignore it – it’s a scam.

17. Migraine changes over time

Migraine is a very complex condition that interacts with many other systems in our body. As our bodies change, so does migraine. The main culprit is hormones, with puberty, pregnancy, menopause and other developmental points being common life stages where migraine changes its spots. Moving town, changing jobs, and even things like trauma or a major event in your life can be enough to prompt a change in your migraine. Your attacks may get better or worse at each point, you may develop new triggers or symptoms, or your treatments may stop working and need revision. Be reassured by knowing this is normal or even expected. You can also plan for it by working with your doctors and keeping a migraine diary through the change to accurately assess how things are going.

18. It’s ok to go to emergency when you need to

Don’t feel guilty: if you are not coping with your migraine attack, whether it be excessive pain that you cannot manage with what you have at home or you are experiencing scary symptoms, it is absolutely the right thing to go to emergency. It is also ok to call an ambulance if you need to, say if you’re having trouble walking or are so ill you don’t think you can navigate a taxi. Pro tip: by the guidelines, the first thing they will offer you at hospital is 900mg of aspirin, so be sure to take that before calling an ambulance or asking someone to take you to hospital.

19. There are lots of treatment options

Far too often we hear that a doctor has told someone living with migraine that there is nothing left to try. There is always more to try! Most of the medications used for migraine are off-label, that is they have not been registered with the TGA for the treatment of migraine. Most of them are not great but you just have to try and see if you can find something that works for you. And, because we’re all unique and react differently to different things, you should try different medications in the same class before striking it off the list.

There are also a whole list of medications and devices that are not on the PBS, or are not available in Australia, which you can consider if you can afford it, including the new CGRP medications. Very often, there are supplements (magnesium, feverfew, CoQ10 and so on) that have never been considered and other lifestyle changes that might work for you. If your doctor is telling you there is nothing more they can do for you, don’t accept defeat, get a new doctor.

20. You will always need to deal with migraine stigma

Migraine stigma is as common as migraine itself: you will always need to deal with people who think migraine is just a headache, that you’re making it up, or that it can be cured. Every second person will have a story about their family/friend/neighbour/random person that ‘just’ did some minor thing like drink more water and they were cured! You will most likely be accused of being a drug seeker many times. You will be judged as lazy. You will be blamed by relatives for problems in the family or ruining family events. Breaking down the wall of stigma we face every day is one of our biggest challenges as a community. Laughing about it helps!

Read the results of our survey on migraine stigma

21. You are not alone: Migraine is common

1 in 5 Australians (1 in 3 women and 1 in 10 men) live with migraine. There’s lots of us! Unfortunately because of the stigma lots of people will never disclose it to people around them. The best way to combat this is to talk about your own migraine often which may encourage them to feel safe talking about their migraine with you. You can also encourage them to join the Migraine Australia Chat Group or your local Migraine Warrior group.

Want more stats on migraine? Read the Deloitte Access Economics White Paper

22. Migraine is genetic

Following the discovery of the TRESK gene in 2010 the science has largely settled that all migraine has a genetic basis. Before that, it was believed that between 40% and 60% of migraine was genetic and the rest was sporadic. As this shift has only taken place relatively recently, you will still come across both doctors and people who live with migraine who do not believe migraine is genetic.

Read more about the genetics of migraine and the TRESK Gene at the Migraine Trust

23. Hormones are a significant part of migraine

Hormones are in themselves a trigger, as well as playing a significant part in how migraine changes throughout our lives. Migraine is experienced differently by men and women as a result, with women faring worst through the middle of our lives when estrogen levels are high and vary considerably with each cycle, and men faring worst later in life when their testosterone levels drop. Teenagers do badly regardless of gender thanks to the variability of puberty. Trans people also have a significant challenge and they need appropriate specialist migraine care.

Watch this video from Migraine Awareness Month 2020 on hormones and migraine with Dr Camille Cowne

24. Lifestyle changes are as important as drugs

Doctors, and particularly neurologists, can be a bit medication focused sometimes, so it is important to make sure you try all the things we try in changing our lifestyle. There isn’t a definitive list, but the goal is to get your life calm and stable, and minimise change as much as possible. This includes setting a routine, having a simplified diet, making sure you get a good night’s sleep, and daily mild to moderate exercise.

A new section on this website on lifestyle changes is coming soon - in the meantime, watch this video from Dr Amaal Starling from the American Foundation on SEEDS - sleep, exercise, eat, diary, and stress - program to optimise your lifestyle. 

25. Almost anything can be a migraine trigger

Changes in the weather can be a trigger. A fight with your mother-in-law can be a trigger. Someone’s perfume can be a trigger. Crying during a movie can be a trigger. A trigger is just a particular thing that your brain is particularly sensitive to and so it is more likely than other things to overload your hypersensitive brain. So literally anything at all that you are exposed to or have going on inside could be a trigger, but only you can figure out what your triggers are.

Read more about triggers

26. Migraine is a journey - It can take a long time to find what works for you

Patience is the most important tool in managing migraine. It can be a very long and windy journey to get the right doctors, the right diagnosis, the right treatment plan, and gaining the personal confidence and migraine literacy to manage this beast of a disorder for the rest of your life. There will be plenty of points of frustration and despair, but it is much better to understand from the outset that migraine is a journey, rather than be hunting down cures and fixes and being constantly disappointed. Managing your mental health is also crucial!

27. Don’t take the combined contraceptive pill

Ladies, especially those with migraine with aura, we are almost never told that we shouldn’t take the combined contraceptive pill because the risk of stroke increases significantly. The mini pill, implants, shots, or Mirena are generally ok, but be sure to discuss the risks of stroke and making your migraine worse with your doctor before starting any hormonal contraceptive. Long term hormonal contraceptives or skipping the sugar pills to prevent periods can also be an important management tool for those with menstrual migraine.

28. You need support – get used to asking for it

Migraine is complex and tough to deal with. You are going to need help: whether it is just having someone who will take you to the hospital if you need it, or perhaps a friend to watch out for symptoms, or an understanding boss who allows you some flexibility to manage your attacks. The worst thing you can do is try and hide it and insist you can do everything by yourself. You probably can most of the time, but at some point you will need help, so get used to asking for it, and accepting it when offered.

29. Migraine is not a symptom of something else

Migraine is what is called a primary diagnosis. This means that it is not a symptom of something else. If you are unsure of your diagnosis and think it may be something else, ask for a referral to a neurologist to confirm the diagnosis, or if you have already seen one you can seek out a second opinion. There is a great deal of work happening to get other conditions that have significant headache as a symptom to not refer to those symptoms as migraine, but instead refer to them as ‘migraine-like headache’, or just headache, so there is less confusion.

30. There are lots of non-drug treatments you can try

As a community, we talk a lot about drugs, as do our doctors. But there are a lot of non-drug things you can try too. Icepacks, diet, lifestyle changes, and supportive therapies like physiotherapy and acupuncture can all be of benefit. As with all things migraine, you just have to try things and see what works best for you.

Read more about treatments

Join the conversation about the things you wish you knew in the Migraine Australia Chat Group

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