Migraine is a very complex genetic neurological disorder and most people who live with it don’t really understand it. A lot of what we ‘know’ about migraine has also changed dramatically in recent years, meaning that what your doctors think and know about migraine is possibly out of date. If you have recently been diagnosed for the first time or were diagnosed a very long time ago but never really understood it, this is a great place to start your migraine education.
What is migraine?
At the most basic level, migraine is having a hypersensitive brain. You were born with slightly different genes that makes your brain work faster, react faster, and sometimes over-react when it is exposed to too much stimulation. This over-reaction is called a migraine attack.
Research has found that the ions in the channels of a migraine brain move faster than other people, and that there are more shortcuts in a migraine brain than other people. You may not have noticed, but most people with migraine do something a bit faster than others: do you talk fast? Can you solve puzzles fast? Perhaps you learn new skills easily, or are very adaptable and resilient? That’s all thanks to your migraine brain.
If you think of your brain like an engine, the migraine brain has been modified to work faster. Push it too hard and it overheats, just like any engine - but because our brains are already wired to run hot, they overheat often. We can manage it through lifestyle modifications, which reduces our exposure to triggers and generally controls the stimulation our brains are exposed to, and by using medications that work to calm the overheating brain or stop it from overheating in the first place.
Everyone with migraine has their own experience of the disorder. There are many different types of migraine, a number of which do not have significant headache as a symptom. We each have our own unique combination of symptoms. We each respond to treatments differently. And we each have our own list of things that are more likely to set off a migraine attack, which are called triggers.
To make things a bit more complex, what will trigger attacks and the symptoms you get during attacks will change over time. Migraine is a spectrum disorder, with some people completely disabled, some are significantly affected, and others only experiencing mild symptoms. And as is the case with most spectrum disorders, you should expect to move up and down the spectrum throughout your life.
Migraine is a primary disorder: it is not a symptom of something else. If you are unsure of your diagnosis you should ask for a referral to a neurologist to confirm that you have migraine and shouldn’t be looking for anything else.
Watch this video from our friends at the Association of Migraine Disorders to learn more about what physically is happening in migraine.
What are migraine attacks?
Migraine attack or episode is the name of the symptoms of migraine that occur in bursts. Previously these were called 'a migraine' or 'migraines', but we now know there is a lot more to migraine, and that it is a constant life long condition rather than just periodic headaches with a few other symptoms.
When the ions in your brain channels go too fast, the valves that regulate those channels get stuck open, and your brain overheats: this is what we call a migraine attack. Three things happen:
- Pain nerves in the head and neck are irritated
- Blood vessels in the head spasm
- Inflammation happens in the affected part of the brain
It is the combination of these three things that cause most of the symptoms of migraine attack, like for example the pulsating headache, nausea and vomiting, or your senses becoming heightened to the extent that light, noise or other things become intolerable.
Research is continuing to uncover more and more about what is actually going on in a migraine attack. We know that the naturally occurring chemicals CGRP, PACAP and substance P surge in our blood when an attack is triggered. This has led to the latest breakthrough in medications.
What causes migraine?
Migraine is a complex genetic disorder. This means that you were born with genes that gave you the condition, but, in order for you to experience the symptoms, there has to be something else that triggers an attack.
Triggers are usually something like certain types of food, changes in the weather, hormone changes, or stress. Other examples of complex genetic disorders are asthma and diabetes. When and how you get migraine attacks will depend on your trigger. A trigger can be anything from a food that you ate, to stress, to the hormonal shifts that occur throughout life.
Some forms of migraine, especially Hemiplegic Migraine, are caused by a single gene defect (monogenetic). If you have one of these monogenetic forms of migraine you are almost certainly going to get migraine attacks at some point in your life.
Most forms of migraine are the result of multiple gene defects combining (polygenetic). This explains the wide variety of symptoms, as well as explaining why someone with no family history of migraine can get it: they may have got a bit from mum, and a bit from dad, and it combined in them to present as migraine. Not everyone with polygenetic forms will get migraine attacks, but most do at some point.
Migraine is a dominant genetic trait: if you have migraine, there is a 50% chance your children will have migraine.
Men and women are affected by migraine differently, thanks to the important role that hormone plays in migraine. While it affects children and early teens roughly equally, from the teenage years on the prevalence in women greatly increases, while attacks in men decrease. By the mid 30s, most men are living relatively unencumbered lives, while for women it can be significantly disabling and attacks are often noticeably increasing in severity and frequency. That trend reverses in later life, with women often getting some respite post-menopause, and men over 70 facing increasing severity and frequency of their attacks.
How is migraine managed?
Effective management of migraine requires a number of changes in your life. The exact combination of things that will work for you is different for each person, but here are our top five lifestyle changes.
- Establish a routine and stick to it. At a minimum, get up at the same time, eat at the same time, go to bed at the same time, every day of the week. Getting a really good night’s sleep is particularly important.
- Consider changing the way you eat to 5 or 6 small meals a day rather than 3 big ones. This will help keep your blood sugar consistent throughout the day and may help reduce your attacks. No-carb and fasting diets are not recommended for people with migraine.
- Do an elimination diet to find any food triggers so you can avoid them. This is best done with a dietician. There are lots of migraine or headache diets around that you may find beneficial, but until you do a diagnostic elimination diet you won’t know which foods are your triggers.
- Keep a diagnostic migraine diary for 3 months to help identify other triggers, such as stress or changes in the weather. For women, pay particular attention to your menstrual cycle: a migraine attack around ovulation and a day or two before your period is common. Note: don’t keep a detailed diary long term as this can be bad for your mental health.
- Exercise often, but moderately. 30 minutes of light exercise, such as a walk or yoga, daily can be very beneficial; however, high impact exercise can make migraine worse.
There are a number of allied health and other supportive things you can try, including:
- Working with a psychologist to manage the anxiety that is fuelled by migraine and emotional triggers
- Working with a physiotherapist to manage any mechanical triggers and provide relief for balance, dizziness and muscular issues (especially for those with vestibular and hemiplegic migraine)
- Try taking supplements, such as vitamin B, E, magnesium, feverfew, butterbur and anything you may be deficient in.
- Using ice packs or heat packs, weighted blankets, and essential oils may help relieve symptoms.
Most people will be unable to manage their attacks without medications. There are four types of medication we refer to:
- Preventative medications that work to prevent migraine attacks from happening in the first place (Botox, CGRPs, older therapies designed for other conditions such as beta-blockers, anti-depressants and anti-seizure medication).
- Acute medications that work to stop the attack once it has started (triptans).
- Relief medications, including pain relief (over the counter like aspirin or prescription like codeine) and medication for nausea that help manage the symptoms of migraine attacks.
There are also devices that are marketed for migraine and headache relief you may want to consider, but these are often expensive.
There are many tips and tricks others with migraine have figured out to relieve migraine attacks. For example, some people find relief from putting an ice pack on the back of your neck while putting your feet in warm water, drinking a coke or strong coffee, or eating salty foods like hot chips. For these, you just need to try them and see what works for you.
Dealing with the stigma of migraine
Sadly, most people think of migraine as being just a headache. This means you are unlikely to get a lot of support and understanding as you seek out help. The language most commonly used to talk about migraine reinforces the 'just a headache' myth, which is why there is a global push to change the language from talking about 'migraines' to 'migraine', and 'a migraine' to 'a migraine attack'.
The science has only settled on all migraine having a genetic cause since the discovery of the TRESK gene in 2010, so there will be plenty of people you encounter – including other people who live with migraine – who do not believe it is genetic. Some doctors still think migraine is still a vascular headache, rather than a neurological disorder! But your life with migraine will be significantly improved by accepting that migraine is a genetic neurological disorder as early as possible: far too many people who live with migraine spend years of their life (and a lot of money) looking for a cure. There is no cure for migraine.
The most important thing to remember is that migraine is not your fault. It isn’t because you drank too much, or got too fat, or anything else you did. Unfortunately, there are a lot of ‘wellness’ people around who will tell you it’s because you didn’t drink enough water, there is something wrong with your diet, or even that your hair is too long and you should cut it! That’s all nonsense. You didn’t do anything to cause migraine, you were born with it.
Reach out to your local Migraine Warrior Support Group to connect with people who get it and can give advice on how to deal with any particular stigma you may be facing.